Hertfordshire Learning Disabilities JSNA · learning difficulties such as dyslexia and dyspraxia.2...

Learning Disabilities

First created: September 2019 Last reviewed: Next due to be reviewed: September 2021 Contact: [email protected]

How to use this document Hertfordshire’s JSNA reports* use a standard format for easy navigation: A one-page ‘infographic style’ summary gives the key messages from the report in a concise format. A PDF of the one-page summary can also be downloaded separately. What’s the issue? defines the topic, explains why it is important in understanding the overall needs of our population, and sets out the relevant subthemes which will be covered in the report. Causes & risk factors summarises key points from the academic and professional literature about what lies behind the issue and what makes people more likely to be affected by it, broken down by the subthemes set out in the previous section. Scale of the issue provides a summary of the relevant statistical data under each of the subthemes. You can find all of the corresponding graphs in an appendix at the back of the document. This information will be the latest available at the time the report is published; however, if you need up-to-date figures for any of the statistical indicators included here, or require further information about them, please visit the data hub at www.hertshealthevidence.org in the first instance. Solutions summarises key points from the academic and professional literature about what works to address the issues covered in the report and describes current service provision in the county. Analysis presents discussion and conclusions about what the evidence presented in the previous sections tells us about the needs of the local population and where there are opportunities to do more to meet those needs. As it’s equally as important to know what a needs assessment can’t tell us as well as what it can, this section also includes an acknowledgement of the key limitations of the report. Recommendations are then made, based on the analysis, to inform commissioners and decision-makers. It is important to note that JSNA recommendations themselves do not constitute Hertfordshire County Council or Hertfordshire Health & Wellbeing Board policy – rather, they are intended to inform commissioning and policy and strategy setting, as part of wider decision-making processes. (Please note that commissioners are advised to read the full document, as this is likely to contain further information pertinent to their decision-making in addition to the headline points covered in the recommendations section and the one-page summary.) * New format applies from July 2016. Note that ‘JSNA Snapshot’ reports have a different set format.

References are included as appropriate and listed at the back of the document, before the appendices, in the Vancouver citation format. Appendices include:

• information on the topic specifically for people undertaking equality impact assessments (with a section for each protected characteristic and one for military personnel and armed forces veterans highlighting any relevant key points)

Additional appendices containing further supplementary information may also be included in some reports, such as:

http://www.hertshealthevidence.org/


• colour coded data tables, commonly known as ‘tartan rugs’, which provide an easy comparison of key data across different geographies

• case studies describing the experiences of local service users or illustrating the work of local services or interventions

Please visit www.hertshealthevidence.org or contact [email protected] if you require the most up-to-date statistics.



mailto:[email protected]

mailto:[email protected]

Hertfordshire JSNA: Learning Disabilities

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Contents

Summary 2

How to use this document 3

1.0 What’s the issue? 6

2.0 Causes & risk factors 14

2.1 Causes of learning disabilities 14 2.2 Associated factors 16

3.0 Scale of the issue 20

3.1 Children and young people 20 3.2 Adults 29 3.3 All ages 39

4.0 Solutions 81

4.1 What works? 81 4.2 Local services and approaches 92

5.0 Analysis 107

5.1 What the evidence tells us 107 5.2 Limitations of this needs assessment 110

6.0 Recommendations 112

References 115

Appendices 124

Appendix A: Information for Equality Impact Assessments 124 Appendix B: Tartan rug

129


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1.0 What’s the issue?

• The Department of Health defines learning disability as the presence of

o ‘a significantly reduced ability to understand new or complex information, to learn

new skills (impaired intelligence), with;

o a reduced ability to cope independently (impaired social functioning);

o which started before adulthood, with a lasting effect on development.’1

• The term encompasses a broad range of conditions and notably is distinct from specific

learning difficulties such as dyslexia and dyspraxia.2 The term ‘intellectual disability’ is also

used internationally, but in the UK learning disability is the most commonly used term.

Learning disability can be grouped by severity (Box 1).

Box 1. Learning disability grouped by severity3,4

• Mild Learning Disability: likely to experience difficulties with complex language and

academic skills. Most people can achieve basic self-care, relatively independent living

and employment as adults but may require appropriate support. Approximate IQ level

50-69.

• Moderate Learning Disability: likely to have basic language skills and limited ability to

acquire academic skills. Some adults may achieve basic self-care, most require

considerable and consistent support to achieve independent living and employment as

adults. Approximate IQ level 35-49.

• Severe Learning Disability: very limited language skills and ability to acquire academic

skills. People with severe learning disabilities may have problems with movement and

usually require daily support in a supervised environment but may acquire basic self-

care skills with intensive training. Approximate IQ level 20-34.

• Profound Learning Disability: very limited communication and self-care. People with

profound learning disabilities may also have movement problems and impaired

hearing or vision. They typically need a high level of daily support in a supervised

environment. Approximate IQ level 1-20.

• Public Health England estimated that in 2015 there were 1,087,100 people with learning

disabilities (LD) in England, including 930,400 adults. This is roughly equivalent to 2% of the

population. However, the number reported by health and social care systems is much lower

with only 252,446 children and adults recorded as having learning disabilities on general

practice registers.5 Even lower numbers are known to learning disability services.6


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• A report from the UCL Institute of Health Equity found that 40% of people with LD aren’t

diagnosed during childhood. Improvements in life expectancy have slowed or even reversed

and more than 1,200 children and adults with LD die prematurely every year.7

1.1 Children and young people

1.1.1 Physical health

• Children with LD experience poorer physical health than the general population. They

experience higher rates of a number of chronic health conditions such as epilepsy and

cerebral palsy.8 People with LD are more likely to experience hearing and visual

impairment.2

• Children with LD are also at higher risk of obesity throughout childhood and adolescence

than the general population. This is associated with a number of adverse health impacts.9,10

• Children with LD are less likely to access timely, effective and appropriate healthcare.11 In

very young children, only severe learning disabilities are likely to be apparent and so many

are undiagnosed.

• Compared to other children, children with LD are more likely to be exposed to tobacco

smoke and are less likely to have been breastfed during infancy.2,11

• Young people with LD are less likely than other young people to participate in frequent

sport or exercise. They are also less likely to engage in drinking alcohol, drugs and sexual

activity. However, if engaging in alcohol, other drugs and sexual activity then they are more

likely to do so in ways that are risky and that may have long-term consequences.12

1.1.2 Mental health

• Children with LD have significantly higher rates of mental health problems that the general

population. Levels of Autism Spectrum Disorder, ADHD and conduct disorders are

particularly higher than the general population. Anxiety and Depressive disorders are also

experienced more frequently by children with LD.8

• This is related in part to increased psychosocial disadvantage.8 Half of the increased risk of

mental health problems may be attributable to poverty, poor housing, discrimination and

bullying.7


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1.1.3 Education

• In 2017, there were 35 children known to schools with LD per 1,000 pupils in England.2,13

The Department of Education publishes annual reports on the number of children with

special educational needs (SEN) and the support they receive at school. SEN is not

equivalent to a diagnosis of LD; however, three categories of SEN are associated with LD:

moderate learning difficulty, severe learning difficulty and profound and multiple learning

difficulties. Taken together these terms are approximately equivalent to the adult term

‘learning disability’.5

• However, this may not capture all children with a learning disability, as those with another

primary need such as Autism Spectrum Disorder will not be included in these categories

where only primary need is assessed. Overall, 89% of children with moderate learning

difficulty, 24% of children with a severe learning difficulty and 18% of children with

profound multiple learning difficulties are educated in mainstream schools.2

• In January 2018, 14.6% of pupils had special educational needs.14 The most common type of

need was moderate learning difficulty (21.6% of pupils with SEN). A total of 2.9% of children

had a Statement of SEN or Education, Health and Care Plan (EHCP) indicating that a formal

assessment has been undertaken and a document is in place setting out the child’s needs.14

• Children with a SEN associated with a learning disability have lower rates of educational

attainment than other children, and the gap at key stage 1 and 2 has increased from

2015/16 to 2016/17.15 Children with LD also have higher rates of school absences than

other children. The majority of absences were authorised and in relation to illness or

medical/dental appointments.14

1.1.4 Social issues

• In 2014, the risk of being a ‘looked after’ child was substantially higher in children with LD.

For all children the risk was 5 per 1,000, rising to 23 per 1,000 for children with moderate

learning disabilities, 31 per 1,000 for children with severe learning disabilities and 40 per

1,000 for children with profound and multiple learning disabilities.5

• Children with LD are significantly more likely to experience poverty and to live in

households of lower socioeconomic status. These children are also more likely to

experience a number of specific psychosocial hazards including living in overcrowded or

poor housing, an increased risk of exposure to violence, abuse or neglect and to adverse life

events.11

• Children with LD are more likely to have fewer friends and to receive less social support.11

This may increase vulnerability to the impacts of adverse life events or social situations.

Furthermore, four in five children with a learning disability are bullied.2


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• Children with LD are less likely to have a close relationship with their mother and to have

consistent parenting and stable family relationships2,11

• Experience of poverty and lower socioeconomic position in children with LD is associated

with worse mental health and poor health behaviours in childhood.11

• Despite the relatively small proportion of the population with a learning disability, around a

quarter of young people in custody have LD.7

1.2 Adults 1.2.1 Physical health

• People with LD experience worse physical health than those without LD.16,17 These

differences in health are avoidable to a certain extent, and therefore represent health

inequalities.8,18 People with LD have higher rates of a number of chronic health conditions,

including congenital heart disease, respiratory disease, epilepsy, gastro-intestinal illnesses,

diabetes and oral health problems, depending on the nature of their learning disability.19–21

• People with LD are more likely to have difficulties with eating, drinking and swallowing, risk

factors for recurrent chest infections.2 The Confidential Inquiry into Premature Deaths of

People with Learning Disabilities (CIPOLD) report identified resultant aspiration pneumonia

as a significant cause of death.22 In addition, there are certain other physical health

conditions that are associated with LD including chronic constipation and gastro-

oesophageal reflux disease with as many as 37% and 33% of people previously reported to

be affected.22

• People with LD have poorer oral health for a variety of reasons, they are more likely to be

reliant on others for cleaning their teeth, have poorer access to dental services and receive

less preventative dentistry than the general population.23 People with LD may also be more

exposed to a number of other risk factors including dietary factors, gastro-oesophageal

reflux disease and lower socioeconomic status amongst others. People with LD may need

greater support to achieve good oral health and access to dental care because of cognitive,

physical and behavioural factors.23–25

• Poor oral health is associated with adverse physical, psychological and social effects. It can

cause pain or discomfort, exacerbate communication difficulties for some, is associated

with chronic disease such as cardiovascular disease and can affect chewing leading to

restricted food choices, which can increase the risk of nutritional deficiencies and

obesity.23,24,26


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• Adults with LD have higher levels of obesity and lower levels of physical activity.21,27 Adults

with LD are also more likely to have a poor diet, with less than 10% of those living in

supported accommodation eating a balanced diet, with an insufficient intake of fruit and

vegetables.2

• There is little evidence regarding the prevalence of smoking amongst people with LD,

previous studies have varied and there is also potentially variation by severity of the

learning disability as well as by other social factors.28

• Evidence regarding the prevalence of substance misuse in people with LD is limited and

likely to be impacted by under-reporting and the fact that those with milder LD are more

likely to misuse substances but are also more likely to be unknown to services for LD or not

diagnosed with LD.29 In general, the evidence suggests that people with LD are less likely to

misuse substances than the general population, although it may be more common in

certain people with LD than others, including young people, and is associated with negative

physical, mental and social impacts. 29

• People with LD are consistently found to have a lower life expectancy than the general

population.5,22,30 Women with LD have a reduced life expectancy of 20-26 years and men of

13-20 years.5 The three most common causes of death are circulatory disease (22.9% of

deaths), respiratory disease (17.1%) and cancers (13.2%). Potentially preventable causes

include epilepsy (3.9%) and lung infection/injury caused by aspiration (inhalation of solids or

liquids) (3.6%).5

• Life expectancy is reduced to a greater degree in people with a more severe learning

disability.22 CIPOLD found that almost half of deaths were avoidable, twice that of the

general population.22 The report identified delays in diagnosis and treatment, and lack of

appropriate care, as contributory factors.

• The Learning Disabilities Mortality Review (LeDeR) Programme was developed to review the

deaths of people with learning disabilities and to identify learning to inform service

improvement initiatives. In 2016-17, the median age at death for people with a learning

disability was 58 years old. More than a quarter of deaths (28%) were in people aged under

50 and people with LD were more likely to die in hospital than the general population.31 The

major causes of death were diseases of the respiratory system and diseases of the

circulatory system with a significant proportion of deaths from pneumonia, aspiration

pneumonia and sepsis.

1.2.2 Mental health

• Adults with LD are at greater risk of mental health problems than the general population,

with this risk attributed to social determinants of health such as poor living conditions


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rather than to their learning disability.12 People with LD experience higher rates of severe

mental health problems, dementia, anxiety and depression.5

• The amount of inpatient NHS mental health care for people with LD has been steadily falling

between 2000 and 2015 in favour of increased outpatient mental health care and

community support.5

• Dementia is more common at earlier ages for people with LD. At age 60-65 13% of people

with LD have dementia, compared to 1% of the general population. Those with Down’s

syndrome are at particularly high risk of Alzheimer’s disease.32

• Rates of mental health problems are likely to be underestimated in people with LD, due to

difficulties in communicating symptoms, symptoms being attributed to their learning

disability (diagnostic overshadowing) and underdiagnosis. A proportion of people with LD

are also prescribed antipsychotics, antidepressants and other related medications in the

absence of a recorded clinical indication.33

1.2.3 Access to services

• The number of people with LD known to services drops precipitously from childhood into

adulthood, with only a minority of adults with LD on GP registers. This may represent the

impact of barriers to accessing effective health care which could contribute to the health

inequalities experienced by this group.5 In 2016/17 only 0.5% of patients were recorded as

having a learning disability on practice registers in England, much lower than the estimated

proportion of the population.2,13

• People with LD often receive lower levels of healthcare and healthcare received is more

likely to be of a worse quality. People with LD are more likely to report difficulty using

health care services (40%) than the general population (18%), and are more likely to report

a number of barriers to accessing healthcare including communication difficulties, anxiety

and discrimination.34

• However, analysis of inpatient hospital episodes revealed that people with LD received

highly significantly more hospital inpatient care than the general population in all medical

specialties except for obstetrics and gynaecology, in which people with LD received less

care.5 People with LD are also more likely to have longer hospital stays, and to have a higher

than average proportion starting as emergency admissions and for ambulatory-care

sensitive conditions (i.e. avoidable with good community and primary care) including

diabetes, epilepsy, constipation and influenza pneumonia.35

• In view of the poorer health experiences of people with LD, and as an attempt to reduce

barriers to healthcare in this group, people with LD aged 14 and over should be offered an


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annual health check with their GP. The proportion receiving an annual health check is

increasing but remained less than half of those on the GP register in 2016/17 (49.7%).21

• The CIPOLD report identified the following healthcare factors as contributory in the

premature deaths of people with LD:

o Lack of awareness of health needs amongst staff o Difficulties identifying needs and responding to changing needs o Lack of coordination of care o Overmedication o Diagnostic overshadowing (the attribution of symptom to their LD) o Lack of priority and of reasonable adjustments.22

• The LEDER report 2016/17 identified the following healthcare issues: o Delays in care or treatment o Gaps in service provision o Organisational dysfunction o Neglect or abuse.31

1.2.4 Social and economic issues

• People with LD experience increased exposure to social determinants of poor health such as

inadequate housing, unemployment, living in areas of socioeconomic deprivation, financial

hardship, violence, discrimination and social isolation.8,28 Rates of paid employment are

substantially lower than the general population at 6% of those with LD known to local

authorities.36 Exposure to these factors leads to adverse impacts on health and wellbeing,

whereas paid employment is associated with better physical and mental health in people

with LD.37

• There are 3.3 adults with LD getting long term support from the local authority per 1,000

people in England.2,13 In 2014/15, for adults with LD aged 18-64, social services expenditure

constituted a total of £4.4 billion on long-term support with the greatest expenditure on

residential care (£1.7 billion). A further £50 million was spent on short-term support. For

adults aged over 65, £534 million was spent on long-term support and £6 million on short-

term support.5

• Over half of family carers who care for an adult with a learning disability spend more than

100 hours a week caring for that person. Of family carers, 74.3% had been carers for over

20 years and 30.2% are not in paid employment due to their caring commitments.5 Seven

out of ten families caring for someone with profound and multiple learning disabilities

report having reached or come close to breaking point because of a lack of short break

services.2


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1.2.5 Older people with learning disabilities

• As the life expectancy of people with LD increases, it is more and more important to

consider the specific needs of older people with LD. Older people with LD experience health

inequalities related to greater exposure to poverty, social isolation, poor housing, lifestyle

factors and barriers to accessing healthcare.38

• Older people with LD face many of the same health and social needs as older people in

general but they also face specific challenges related to their learning disability. For

instance, people with Down’s syndrome are at higher risk of developing dementia at

younger ages. This is exacerbated by difficulties in communicating symptoms and in

healthcare practitioners distinguishing symptoms from those related to the person’s

learning disability.39

• Older people with LD have particular housing and social support needs. Two thirds of adults

with LD live with their families, usually their parents.39 Older people with LD may be living

with family carers who themselves are becoming older and in need of support or no longer

able to cope with caring duties. Alternatively, older people with LD may be caring for family

members and becoming less able to cope. This indicates there may be a growing need for

social support for these families, and planning is important to avoid inappropriate moves

when sudden illness of death changes the living situation.

• Older people with LD are more likely to be placed in older people's residential homes at

younger ages than the general population, even though this may not meet their

preferences or communication and support needs.39

• Many older people with LD are not known to health and social care services and others may

find it difficult to express their needs.39,40 Management of the needs of this group is likely to

be complex and may place a substantial pressure on services.

1.2.6 LGBT people with learning disabilities.

• There is an increasing but still limited evidence base regarding sexuality and sexual health in people with LD. A systematic review focussed on issues affecting people with LD who identify as lesbian, gay, bisexual and transgender (LGBT).41 Key issues identified for this group included access to services, access to support and counselling and access to education and social support networks.

• People with LD who identify as LGBT are at increased risk of stigma for both their LGBT status and their learning disability and of discrimination, marginalisation, social exclusion and limited opportunities to develop relationships.41–43


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2.0 Causes & risk factors

2.1 Causes of learning disabilities

• The causes of a learning disability can be grouped into three broad categories by the time at

which they impacted development:

o Prenatal causes (referring to the period before birth, during or relating to pregnancy).

o Perinatal causes (referring to the period around the time of birth, usually from the time surrounding the birth to a week after birth).

o Postnatal causes (relating to any time after birth, after the perinatal period).

• Examples of conditions included in each category are listed in Box 2.

Box 2. Causes of Learning Disability2,13

• Prenatal: o Chromosome and genetic abnormalities, such as Down’s syndrome, Edward’s

syndrome, Williams syndrome and Rhett syndrome o Maternal infections such as Rubella, Cytomegalovirus, Toxoplasmosis o Environmental/social factors such as foetal alcohol syndrome, drugs,

environmental pollutants, radiation o Cerebral palsy

• Perinatal: o Precipitated or prolonged labour o Birth trauma o Prematurity o Cerebral palsy o Global developmental delay: prematurity, environmental (abuse, neglect)

• Postnatal: o Infection e.g. meningitis, measles, encephalitis o Injury: abuse, accidents o Malnutrition o Chromosome and genetic anomalies such as Batten disease, Tay-Sachs disease o Metabolic disorders, congenital hypothyroidism

2.1.1 Prenatal factors

• Chromosomal and genetic abnormalities are associated with older maternal age during pregnancy, a family history of genetic disorders and having had a previous pregnancy with a chromosomal abnormality or genetic disorder.44,45 The risk of Down’s syndrome, for instance, increases with maternal age, from 1 in 1500 at age 20 to 1 in 50 or greater at age 45.46


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• Maternal exposure to a number of infections during pregnancy has the potential to cause LD, which may or may not be related to cerebral palsy. Cerebral palsy can be defined as “a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.”47 People with cerebral palsy may also have LD or they may not.

• Infections that may cause cerebral palsy include Cytomegalovirus, Chickenpox, Rubella, Toxoplasmosis, Herpes and infection of the placenta or foetal membranes.46 Other important prenatal risk factors for cerebral palsy include multiple births (twins, triplets etc.), assisted reproductive technology pregnancies such as in-vitro fertilisation (IVF) and maternal health conditions (including thyroid problems, learning disability and seizures).46

• Foetal alcohol syndrome (FAS) has been linked to a number of maternal risk factors, including characteristics of the mother’s drinking patterns and in particular binge-drinking. Other factors which increase the risk of FAS from alcohol exposure include greater maternal age, smaller maternal body size, poor nutrition, greater number of previous pregnancies and births, lower socioeconomic status, other drug use and other social factors.48

• Maternal drug use is more common amongst women of lower socioeconomic status and other vulnerable groups. It is also associated with reduced use of antenatal services which has adverse impacts on infant mortality and outcomes.48

• There is some evidence for an increased risk of LD associated with prenatal exposure to environmental toxins. Industrial chemicals present in the environment have been suggested to a play a role in LD and other disorders of developmental delay.49 Air pollution, particularly traffic-related air pollution, has also been identified as containing toxic chemicals which may contribute to the development of LD. Increased exposure is associated with adverse impacts on cognition throughout life.50–53

2.1.2 Perinatal factors

• Preterm birth, prolonged labour and birth trauma have all been identified as potential causes of LD. There are numerous risk factors which have been identified for preterm birth including previous preterm birth; multiple pregnancy; infections including pelvic infection, sexually-transmitted infections and urinary tract infections; high blood pressure; Diabetes and Gestational Diabetes; and pregnancies resulting from IVF.54–56

• There are a number of other factors which have been identified as being associated with preterm birth, including maternal age less than 18 or over 35, smoking, alcohol, drug use, domestic violence, lack of social support, lower socioeconomic status, stress and exposure to certain environmental pollutants.54–56 There is also some variation by ethnicity, with women of Black ethnicities at greater risk than women of White ethnicities.56

• Cerebral palsy may also result from factors related to birth, including low birthweight, premature birth, infection or fever during delivery, multiple births (mostly via preterm birth and low birthweight), assisted reproductive technology (via preterm birth and low


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birthweight), jaundice in the baby and birth complications (detachment of the placenta, uterine rupture or problems with the umbilical cord can disrupt oxygen supply).46

2.1.3 Postnatal factors

• A small minority of cerebral palsy occurs greater than 28 days after birth; this is known as acquired cerebral palsy. The majority of these cases are caused by a neurological infection, such as meningitis or encephalitis, or head injury. Other causes include a stroke or intracranial bleeding, and acquired cerebral palsy remains a higher risk in infants who were born preterm or at low birthweight.46 As discussed cerebral palsy may be associated with LD.

• Head injury is also a cause of LD. Head injury may occur as a result of accidental or non-accidental injury. A number of factors have been identified as increasing the risk of accidental injury in childhood, including sociodemographic factors such as lower parental income and education level, mental health issues, heavy drinking and substance misuse.57–

59 Head injury is strongly associated with social deprivation, with major causes including falls, sports-related injuries and motor vehicle accidents.60

• Non-accidental injury is commoner in younger children and there is a higher risk amongst children with another medical condition or who were born prematurely. There are a number of care-giver related factors associated including mental health conditions, lower socioeconomic status and lack of community support.61

• Infections that may cause LD include measles, meningitis and encephalitis. Measles and certain forms of meningitis are vaccine-preventable diseases and incidence of these diseases has fallen substantially since the introduction of vaccinations.60 Despite this, there continue to be measles outbreaks in the UK and vaccination uptake varies by ethnicity, deprivation and geography so that the impact of this condition is not evenly spread.62

• Autism can co-occur with a learning disability, but autism is not a learning disability, they are distinct conditions. Around half of people with autism also have a learning disability.63

2.2 Associated factors 2.2.1 Children and young people 2.2.1(i) Sex

• Boys are more likely to have special educational needs (SEN) than girls. In January 2018, 14.7% of boys were receiving SEN support compared with 8.2% of girls. A statement or Education, Health and Care Plan (EHCP) was in place for 4.0% of boys and 1.6% of girls. These figures have remained fairly stable.14

• There were more boys receiving SEN support or with a statement/EHCP for moderate, severe and profound and multiple learning difficulties (343,126) than girls (115,954) in


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state-funded primary, secondary and special schools in January 2018. So, 75% of children with SEN support or a statement/EHCP for these needs were boys14. However, moderate learning difficulty was more common in girls (27.5%) than boys (22.2%).14

2.2.1(ii) Age

• The percentage of pupils requiring SEN support increased up to a peak at age 10 (14.6%) and then declines as age increases. The percentage of pupils with a statement or EHCP continues to increase up to age 15 (3.8%).14 The greatest number of children receiving SEN support for a moderate learning difficulty was at age 10 and it was also the commonest SEN overall at this age (30.1%). The greatest number of children with a statement/ EHCP for moderate learning difficulty was at age 15.14

• Out of all children receiving SEN support for a severe learning difficulty, the greatest number were aged 7, but comparatively it was commonest as a proportion of all SEN support at age 2 and under. Out of all children with a statement/ EHCP plan for severe learning difficulty, the greatest number were aged 9 and 12. It was commonest as a proportion of all children with a statement/EHCP at age 18.14

• Out of all children receiving SEN support for profound and multiple learning difficulties, the greatest number were aged 3, but comparatively it was commonest as a proportion of all SEN support at age 2 and under. Out of all children with a statement/ EHCP plan for profound and multiple learning difficulties, the greatest number were aged 6 and 7. It was commonest as a proportion of all children with a statement/EHCP at age 2 and under.14

2.2.1(iii) Ethnicity

• In January 2018, special educational needs were most frequent in travellers of Irish heritage (30.9%) and Roma children (26.8%). Statements or EHCPs were most common in travellers of Irish heritage (4.5%) and in Black Caribbean children (4.2%), higher than the national average of 2.9%.14

• In January 2018, moderate learning difficulty was the most common primary type of need for pupils on SEN support for White ethnicities (23.8%) whereas the most common primary type of need for Mixed (23.3%), Asian (34.0%), Black (31.8%) and Chinese (45.1%) ethnicities was speech, language and communication needs. If moderate, severe and profound and multiple learning difficulties are grouped together then this represents the most common need group for White ethnicities, but speech, language and communication needs remains the most common for other ethnicities.14

• If moderate, severe and profound and multiple learning difficulties are grouped together then this represents the most common need group for children with a statement/EHCP for White ethnicities and Asian ethnicities, but Autism Spectrum Disorder is the most common for Mixed, Black and Chinese ethnicities.14

• Previous work has also found an increased rate of less severe LD amongst travellers of Irish and Roma heritage and an increased rate of severe LD amongst children of Pakistani and


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Bangladeshi heritage. Minority ethnicity status was, however, associated with lower rates of LD overall.64

2.2.1(iv) English as a first language

• In 2018, pupils whose first language is English remained more likely to have SEN (14.9%) than those whose first language is not English (12.4%).14 This data was not further broken down by primary need category.

2.2.1(v) Social situation

• In 2017, 56.3 % of children looked after by local authorities had SEN. Looked after children are almost four times more likely to have SEN and almost ten times more likely to have a statement or EHCP than all children.65 The primary need for those with a statement or EHCP is social, emotional and mental health, but this is followed by moderate and severe learning difficulties.

• Children from poorer households are more likely to have a SEN associated with a learning disability. Children from areas with higher deprivation levels are also more likely to have less severe forms of LD, but conversely have been found to have lower levels of profound and multiple LD, the most severe type.64

• In January 2015, 31.4% of children with SEN support in association with a learning disability and 35.6% of children with a statement or EHCP in association with a learning disability were in receipt of free school meals. This is over twice the proportion of all pupils receiving free school meals.5

• Children with LD are significantly more likely to be living in households characterised by low socioeconomic position and poverty. They are also more likely to experience recurrent poverty and are less likely to escape from poverty.11

2.2.2 Adults 2.2.2(i) Sex

• A 2011 study reported that there were a greater total number of adult men with LD in the UK than adult women.6

• In 2017/18, data from NHS Digital found that there was a greater number of men on GP learning disability registers, with 61.5% of the total being male.66

2.2.2(ii) Age

• Life expectancy has improved over recent years but remains substantially lower than the general population.30,67 Over the last few decades, life expectancy has increased on a par with that of the general population, with notable exceptions including people with Down’s syndrome, epilepsy or multiple disabilities.67–69


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• People with LD therefore account for a smaller proportion of the population in older age groups. Primary care data shows a highest prevalence in young adults aged 18-24, and prevalence declines over the age of 60.21 This situation may change; older adults are proportionally the fastest growing group of people with LD and there is a forecasted increase of 164% in the number of people with LD aged over 80 and requiring social care by 2030.70,71

2.2.2(iii) Ethnicity

• Variation in the level of special educational needs by ethnicity has been highlighted for children and young people. Evidence about LD by ethnicity in adults has been inconsistent and there is very little evidence available for some ethnicities.72

• Some studies have shown a higher prevalence of LD in people of South Asian ethnicity, particularly of severe LD.73,74 Whereas another study found the prevalence to be similar to people of White ethnicity.75

2.2.2(iv) Social situation

• People with LD are under-represented in certain social groups including people in paid employment and people in education or training. People with LD are more likely to be living in areas of deprivation and to experience financial hardship.28


20

3.0 Scale of the issue

3.1 Children and Young People 3.1.1 Children with learning disabilities known to schools

• In 2018, the proportion of children with learning disabilities known to schools in Hertfordshire was 23.03 per 1000. Hertfordshire was statistically significantly lower than England (33.9 per 1000). There were 2 comparator areas statistically significantly lower and 8 comparator areas statistically significantly higher than Hertfordshire. It is important to note that this does not capture all children with a learning disability, as some may have a different primary need recorded, such as Autism Spectrum Disorder.

Fig. 1.1 Children with learning disabilities known to schools (per 1000 pupils)

• In 2018, the proportion of all children at primary school with SEN (EHCPs and/or SEN support) that had a primary need of moderate (MLD), severe (SLD) or profound and multiple learning difficulties (PMLD) was 15.5%. This was lower than the proportion in England and is lower than previous years.


21

Table 1. Children with MLD, SLD and PMLD known to primary schools in Herts (% of all pupils)

Source: Hertfordshire County Council Children’s Services Data

• In 2018, the proportion of all children at secondary school with SEN (EHCPs and/or SEN support) that had a primary need of moderate, severe or profound and multiple learning difficulties was 18.8%. This was lower than the proportion in England and has been fairly stable since 2015.

Table 2. Children with MLD, SLD and PMLD known to secondary schools in Herts (% of all pupils)


• In 2018, the proportion of all children at special schools with SEN (EHCPs and/or SEN support) that had a primary need of moderate, severe or profound and multiple learning difficulties was 38.1%. This was lower than the proportion in England and has been falling over the past few years.

Table 3. Children with MLD, SLD and PMLD known to special schools in Herts (% of all pupils)


Primary need Primary Schools 2014 2015 2016 2017 2018

MLD Herts 11.6 18.7 17.5 16.7 14.9

England 19.1 24.6 25.0 23.3 22.2

SLD Herts 0.5 0.5 0.4 0.3 0.3

England 1.3 0.9 0.7 0.7 0.6

PMLD Herts 0.5 0.3 0.3 0.3 0.3

England 0.4 0.3 0.3 0.3 0.3

Total Herts 12.6 19.5 18.2 17.3 15.5

England 20.8 25.8 26.0 24.3 23.1

Primary need Secondary Schools 2014 2015 2016 2017 2018

MLD Herts 11.9 18.1 17.8 19.4 18.7

England 20.3 24.9 25.2 24.0 22.9

SLD Herts 0.4 0.2 0.1 0.2 0.1

England 0.9 0.6 0.5 0.5 0.5

PMLD Herts 0.1 - 0.0 0.0 0.0

England 0.1 0.1 0.1 0.1 0.1

Total Herts 12.4 18.3 17.9 19.6 18.8

England 21.3 25.6 25.8 24.6 23.5

Primary need Special Schools 2014 2015 2016 2017 2018

MLD Herts 26.7 20.5 16.7 14.5 11.8

England 17.2 16.2 15.6 14.5 13.5

SLD Herts 21.3 21.9 22.8 23.0 22.4

England 24.8 24.4 23.8 23.2 22.4

PMLD Herts 4.6 4.7 4.7 4.5 3.9

England 8.8 8.6 8.2 7.8 7.4

Total Herts 52.6 47.1 44.2 42.0 38.1

England 50.8 49.2 47.6 45.5 43.3


22

3.1.2 Children with a learning disability: school census data

• Data from the 2018 school census (spring term) in Hertfordshire showed that there was a total of 6,099 pupils recorded in the school census as having a moderate, severe or profound and multiple learning difficulty, with 2,451 girls (40.2%) and 3,648 boys (59.8%). Of these pupils, 3,061 (50.2%) were in primary school and 3,038 (49.8%) were in secondary school.

• Since 2014, the number of pupils with MLD, SLD or PMLD has increased for both boys and girls and at both primary and secondary school level, although this appears to have plateaued in the last couple of years.

• In 2018 there were also 63 children with a moderate, severe or profound and multiple learning difficulty in Nursery school in Hertfordshire. This has been relatively stable over the past five years. The numbers of children in Nursery school are too low to present by the first and second year of nursery (N1 and N2) separately so have been aggregated.

Table 4. Number of pupils in primary and secondary schools in Hertfordshire recorded on the

school census as having MLD, SLD or PMLD, by school stage and sex

Source: School census (spring term 2014-18), provided by Children’s Services, Hertfordshire County Council

Table 5. Number of pupils in Herts recorded on the school census as having MLD, SLD or PMLD, by school year, including Nursery

Nursery (N1 and N2)

Reception 1 2 3 4 5 6 7 8 9 10 11 12 13 14

2014 52 115 143 197 249 301 302 334 284 301 272 328 300 42 67 32

2015 70 152 321 440 542 585 555 541 570 474 474 483 559 88 75 47

2016 60 153 315 465 531 581 592 600 592 604 497 489 499 106 82 30

2017 63 160 281 450 552 549 602 635 683 582 592 488 515 104 94 38

2018 63 158 271 388 525 562 553 604 602 612 547 563 487 104 88 35


Female Male

2014 2015 2016 2017 2018 2014 2015 2016 2017 2018

Primary MLD 436 1004 1039 1024 1010 906 1789 1815 1788 1593

SLD 79 84 93 98 117 144 186 205 230 254

PMLD 34 30 43 47 42 42 43 42 42 45

Total 549 1118 1175 1169 1169 1092 2018 2062 2060 1892

Secondary MLD 452 975 1040 1167 1150 821 1447 1531 1580 1562

SLD 105 98 94 94 98 178 178 171 186 165

PMLD 36 37 36 39 34 34 35 27 30 29

Total 593 1110 1170 1300 1282 1033 1660 1729 1796 1756

Total pupils 1142 2228 2345 2469 2451 2125 3678 3791 3856 3648


23

Fig. 1.2 Number of girls in Herts recorded on the school census as having MLD, SLD or PMLD in primary schools


Fig. 1.3 Number of boys in Herts recorded on the school census as having MLD, SLD or PMLD in

primary schools



24

Fig. 1.4 Number of girls in Herts recorded on the school census as having MLD, SLD or PMLD in secondary schools


Fig. 1.5 Number of boys in Herts recorded on the school census as having MLD, SLD or PMLD in

secondary schools



25

Fig. 1.6 Number of girls in Herts recorded on the school census as having MLD, SLD or PMLD in both primary and secondary schools


Fig. 1.7 Number of boys in Herts recorded on the school census as having MLD, SLD or PMLD in both primary and secondary schools



26

3.1.3 Children with an Education, Health and Care Plan (EHCP)

• In March 2019, there were 2,516 children with an EHCP with a primary or secondary need of moderate, severe or profound and multiple learning difficulties known to Children’s services in Hertfordshire. The majority of these children had a primary or secondary need of MLD (79.5%). This number has increased over the past three years.

Table 6. Number of children in Hertfordshire with an EHCP known to Children’s Services with a

primary or secondary need of MLD, SLD or PMLD

Source: Central Special Educational Needs and Disabilities (SEND) team, Children’s Services, Hertfordshire County Council

Fig. 1.8 Number of children in Herts with an EHCP known to Children’s services with a primary or

secondary need of MLD, SLD or PMLD, divided into primary and secondary need categories

Source: Central SEND team, Children’s Services, Hertfordshire County Council

• In March 2019, 62.6% of the children with an EHCP with a primary or secondary need of moderate, severe or profound and multiple learning difficulties known to Children’s services in Hertfordshire were male. This proportion has remained stable over the past three years.

March 2017 March 2018 March 2019

MLD SLD PMLD Total MLD SLD PMLD Total MLD SLD PMLD Total

Primary need 1286 385 54 1725 1449 378 56 1883 1638 372 59 2069

Secondary need 317 74 11 402 336 74 10 420 363 74 10 447

Total 1603 459 65 2127 1785 452 66 2303 2001 446 69 2516


27

Fig. 1.9 Number of children in Herts with an EHCP known to Children’s services with a primary or secondary need of MLD, SLD or PMLD, by sex

Source: Central SEND team, Children’s Services, Hertfordshire County Council

• In March 2019, the ages of children with an EHCP with a primary or secondary need of MLD, SLD or PMLD known to Children’s services in Hertfordshire ranged from age 2 to age 26. The age group with the greatest total number of children was ages 11 to 15 years old, followed by ages 16 to 20. These have been the two largest age groups since 2017, although previously the 16 to 20 years old age group has been slightly larger.

Fig. 1.10 Number of children in Herts with an EHCP known to Children’s services with a primary

or secondary need of MLD, SLD or PMLD, by age group

Source: Central SEND team, Children’s services, Hertfordshire County Council


28

• In March 2019, the district with the greatest number of children with an EHCP with a primary or secondary need of MLD, SLD or PMLD was Dacorum followed by East Herts. This has been the case for the past three years.

Fig. 1.11 Number of children in Herts with an EHCP known to Children’s services with a primary

or secondary need of MLD, SLD or PMLD, by home district and year

Source: Central SEND team, Children’s services, Hertfordshire County Council

3.1.4 Children with learning disabilities in out-of-county placements

• There are a number of children with either a primary or secondary need of moderate, severe or profound and multiple learning difficulties known to Children’s services in Hertfordshire who are in out-of-county educational placements. Of note, where a child has both a primary and a secondary need listed corresponding to these categories they have only been counted once under their primary need category.

• In March 2019, there were 42 children with an EHCP with a primary or secondary need of MLD, SLD or PMLD known to Children’s services in Hertfordshire who were in out-of-county placements. The previous year there were 46. Of these 42 children, the largest need category was MLD, with 59.5% having this primary or secondary need.

• In March 2019, 71.4% of these children were male which was similar to 2018 (67.4%). The ages ranged from 7 to 20 years old in 2019 and 7 to 24 years old in 2018. The numbers of children per year of age are too small to be presented here although the greatest number of children were aged 16 in both years.


29

Table 7. Number of children in Herts with an EHCP known to Children’s services with a primary or secondary need of MLD, SLD or PMLD who are in out of county educational placements, by

age group

Age group May 2018 March 2019

7-11 6 10

12-16 22 21

17+ 18 11

Total 46 42

• In March 2019, children in out-of-county placements came from a range of home districts in Hertfordshire, again numbers are too small to be presented here and numbers do not vary considerably by district. The ratio of day to residential out-of-county placements has been roughly 1:1. In March 2019, 57.1% of out-of-county placements were day placements whereas in May 2018, 54.3% were residential placements. Out of all the children in out-of-county placements, 19.0% were looked-after children in 2019 and 17.4% in 2018.

3.1.5 School absences and exclusions

• In 2017/18 the level of overall school absence for children with MLD, SLD or PMLD was 192,122 school sessions, of which the majority (109,742 sessions, 57%) were classified as persistent absences. There were 117 fixed period exclusions from school in children with MLD, SLD or PMLD. Fixed period exclusions refer to where a child is temporarily removed from school for up to 45 school days.76 The number of permanent exclusions (expulsions) was less than 10.

3.1.6 Young offenders

• Limited data is available on people with learning disabilities within the Youth Justice system in Hertfordshire. In the two-year period from 2017-2018 there were 82 young offenders in Hertfordshire with SEN. For this group as a whole, the majority (86.6%) were male which is similar to the young offender population as a whole and 30.5% were of Black and Minority Ethnicity, which is higher than for young offenders in general (25%), people of Black and Minority Ethnicity are in general overrepresented in young offenders.77 The majority (90.2%) had an EHCP.

• However, only a small proportion of those young offenders with SEN are likely to have a learning disability. In fact, the majority had ‘social, emotional and mental health needs’. Only 8.5% of all young offenders with a SEN were identified as having a moderate learning difficulty on its own or in conjunction with another need.

3.2 Adults 3.2.1 Population projections

• The Projecting Adult Needs and Service Information (PANSI) system provides population projections for adults with learning disabilities.66 The total population aged 18-64 predicted


30

to have a learning disability in Hertfordshire is estimated to be 17,880 in 2025 and 18,352 in 2035. Breakdown of these figures by district, by severity of learning disability and by Down’s syndrome are available from the PANSI system. Of these adults aged 18-64 with a moderate and severe LD, 1,460 are predicted to be living with a parent by 2025 rising to 1,517 in 2035. A total of 331 are predicted to display challenging behaviour in 2025, rising to 338 by 2035.

Table 8. Population projections for the numbers of adults aged 18-64 in Herts with a learning

disability, by age group Population group

2019 2020 2025 2030 2035 Change from 2019 to 2035

(%)

People aged 18-24 predicted to have a learning disability

2,242 2,190 2,168 2,464 2,532 12.9


3,850 3,857 3,690 3,466 3,593 -6.7


4,185 4,222 4,433 4,457 4,282 2.3


4,022 3,996 3,983 4,161 4,361 8.4


3,250 3,344 3,606 3,590 3,583 10.2

Total population aged 18-64 predicted to have a learning disability

17,550 17,609 17,880 18,138 18,352 4.6

Source: Projecting Adult Needs and Service Information (PANSI), www.pansi.org.uk

• The Projecting Older People Population Information (POPPI) System provides population projections for older people with learning disabilities.66 The total population aged 65 and over predicted to have a learning disability in Hertfordshire is estimated to be 4,819 in 2025 and 6,060 in 2035. Breakdown of these figures by district, by severity of learning disability and by Down’s syndrome are available from the POPPI system.

• Dacorum is predicted to have the highest total number of people with learning disabilities of all ages, followed by East Hertfordshire over the next 15 years.

Table 9. Population projections for the numbers of older people in Herts with a learning

disability, by age group Population group 2019 2020 2025 2030 2035 Change from

2019 to 2035 (%)


2,324 2,349 2,426 2,801 3,055 31.5


1,364 1,396 1,681 1,815 1,943 42.4

People aged 85 and over predicted to have a learning disability

607 624 712 834 1,063 75.1

Total population aged 65 and over predicted to have a learning disability

4,295 4,369 4,819 5,449 6,060 41.1

Source: Projecting Older People Population Information (POPPI), www.poppi.org.uk


31

3.2.2 Accommodation and social care

• In 2015/16, the number of adults (18 and older) with a learning disability who were getting long term support from the local authority in Hertfordshire was 3.58 per 1000. Hertfordshire was statistically significantly higher than England (3.33 per 1000). There were 7 comparator areas statistically significantly lower and 1 comparator area statistically significantly higher than Hertfordshire. Fig. 2.1 Adults with a learning disability receiving long term support from local authorities

per 1000 people

• In 2015/16, the proportion of adults (18 and older) with a learning disability on the GP learning disability register who were receiving long term support from the local authority in Hertfordshire was 60.7%. Hertfordshire was statistically significantly higher than England (54.5%). There were 3 comparator areas statistically significantly lower and 1 comparator area statistically significantly higher than Hertfordshire.


32

Fig. 2.2 Adults with a learning disability receiving long term support from local authorities as a proportion of those on the GP register

• In 2015/16, the proportion of supported working age adults with a learning disability who were living in unsettled accommodation in Hertfordshire was 26.7%. Hertfordshire was statistically significantly higher than England (19.8%). There were 7 comparator areas statistically significantly lower and 3 comparator areas statistically significantly higher than Hertfordshire.

Fig. 2.3 Proportion of supported working age adults with a learning disability who were living in

unsettled accommodation


33

• In 2015/16, the proportion of supported working age adults with a learning disability whose accommodation status was severely unsatisfactory in Hertfordshire was 0.3%. Hertfordshire was statistically significantly higher than England (0.1%). There were 8 comparator areas statistically significantly lower and no comparator areas statistically significantly higher than Hertfordshire.

Fig. 2.4 Proportion of supported working age adults with a learning disability whose

accommodation status was severely unsatisfactory

• In 2015/16, the proportion of supported working age adults with a learning disability whose accommodation status was not known to the local authority in Hertfordshire was 0%. Hertfordshire was statistically significantly lower than England (5.0%). There were no comparator areas statistically significantly lower and 8 comparator areas statistically significantly higher than Hertfordshire.


34

Fig. 2.5 Proportion of supported working age adults with a learning disability living whose accommodation status was not known to the local authority

• More recent data is available for the proportion of supported working age (18-64) adults with a learning disability who were living in stable and appropriate accommodation although it is not directly comparable to the data used in the other accommodation indicators. In 2017/18, the proportion who were living in stable and appropriate accommodation was 76.1% (95% Confidence Interval 74.6-77.6%). This was not statistically significantly different from the national average of 77.2%. There were 2 comparator areas statistically significantly higher and 6 comparator areas statistically significantly lower than Hertfordshire.

Fig. 2.6 Proportion of supported working age adults with a learning disability who were living in

stable and appropriate accommodation


35

• In 2015/16 the proportion of supported adults with a learning disability who were receiving direct payments in Hertfordshire was 19.4%. Hertfordshire was statistically significantly lower than England (28.6%). There were no comparator areas statistically significantly lower and 9 comparator areas statistically significantly higher than Hertfordshire.

Fig. 2.7 Proportion of supported working age adults with a learning disability who were

receiving direct payments

• In 2016/17 the proportion of individuals with learning disabilities in Hertfordshire involved in Section 42 safeguarding enquiries was 91.79 per 1,000 people on the GP Learning Disability register. Hertfordshire was statistically significantly higher than England (54.3 per 1,000). There were 9 comparator areas statistically significantly lower and no comparator areas statistically significantly higher than Hertfordshire.


36

Fig. 2.8 Individuals with learning disabilities involved in Section 42 safeguarding enquiries per 1,000 people on the GP register

• In April 2019, there were 3,256 people with LD receiving a long-term service in Hertfordshire. In 2018/19, the number of people with a learning disability who were using a commissioned or in-house day opportunity service in Hertfordshire was 1544. This number has fallen slightly over the previous three years.

Fig. 2.9 Total number of service users with a learning disability and a Day opportunity service

Source: 100 point plan data provided by Adult Care Services, Hertfordshire County Council

• In 2018/19, there were 146 people with a learning disability receiving a commissioned or in-house Homecare service in Hertfordshire. This has been fairly stable over the previous three years.


37

Fig. 2.10 Total number of service users with a learning disability and a Homecare service


• In 2018/19, there were 352 people with a learning disability receiving a commissioned or in-house short stay service in Hertfordshire. This has fallen slightly over the previous three years.

Fig. 2.11 Total number of service users with a learning disability and a short stay service


• In 2018/19, there were 1147 people with a learning disability receiving a commissioned Supported Living service in Hertfordshire. This has risen slightly over the previous three years.


38

Fig. 2.12 Total number of service users with a learning disability and a Supported Living service


3.2.3 Employment

• The latest Adult Social Care Outcomes Framework data shows that in 2017/18, the proportion of supported working age adults with a learning disability in paid employment in Hertfordshire was 6.6% (95% confidence interval 5.8-7.5%). This was higher than for England (6.0%) but not statistically significantly. Confidence intervals for 2016/17-2017/18 calculated using the Wilson method.78

• Of note, data used in the below graph is sourced from the Adult Social Care Outcomes Framework79 for 2016/17- 2017/18 (unrounded data) and from the Learning Disabilities Profile, Public Health England for 2014/14-2015/1680 (data rounded to nearest 5).

Fig. 2.13 Proportion of supported working age adults with a learning in paid employment


39

• In 2017/18, the gap in the employment rate between people with learning disabilities and the general population was 72.3% (95% confidence interval 70.0-74.6%). This has remained fairly stable over the previous few years and is statistically significantly higher than the gap in England of 69.2%.81

3.3 All ages

• The data presented in this section refers to people on the GP learning disability register which includes people with learning disability of all ages. However, the numbers aged under 18 who are included in the local samples are low and therefore inferences for this group should be made with caution. Some indicators exclude children and young people from the age range or may not be relevant. The breakdown by age is available for every indicator from NHS Digital interactive dashboard.82

• As discussed further in Section 5.1, the data presented has a number of limitations. Foremost, the coverage of practices is variable. In 2017/18, 6% of practices in NHS East and North Hertfordshire CCG were included, giving a total sample size of 249 patients, and 70% in NHS Herts Valleys CCG, giving a total sample size of 1,965 patients. Therefore, data for East and North Hertfordshire CCG in particular may not be representative and where presented percentages are low, numbers of people can be very small.

3.3.1 Prevalence of learning disabilities

• In 2017/18, the number of people with learning disabilities known to GPs (percentage on the GP practice register recorded as Quality Outcomes Framework prevalence) in Hertfordshire was 0.45%. Hertfordshire was statistically significantly lower than England (0.49%). There were 4 comparator areas statistically significantly lower and 2 comparator areas statistically significantly higher than Hertfordshire.

Fig. 3.1 Learning disability Quality Outcomes Framework (QOF) prevalence


40

• In 2017/18, in East and North Hertfordshire Clinical Commissioning Group (ENHCCG) the prevalence of people with learning disabilities known to GPs was 0.7% and in Herts Valleys CCG (HVCCG) was 0.4%. A higher proportion of the learning disability population were in younger adult age groups and a lower proportion in older age groups which relates to the lower life expectancy in people with learning disabilities. There are few young children on GP registers which may relate to a lack of recording. The prevalence in children and young people (aged 0-17) was 0.38% in ENHCCG and was 0.31% in HVCCG. The mortality rate (the proportion of patients with a learning disability who died in the 2017/18 year) was 2.0% in ENHCCG and 1.6% in HVCCG.

Fig. 3.2 Population pyramids for those on the learning disability register for ENHCCG (a) and HVCCG (b)

a) b)

• In 2017/18, the proportion of people on the Learning Disability register with a diagnosis of Down’s syndrome was 6.4% in ENHCCG and 9.4% in HVCCG. This was not statistically significantly different from the proportion in England as a whole. In both CCGs, a higher proportion of the 0-9 year old age group on the learning disability register have a diagnosis of Down’s syndrome (23.8% in HVCCG and 50.0% in ENHCCG).

• In both CCGs and nationally, there was a higher proportion of females on the register with a diagnosis of Down’s syndrome than amongst males, although this was not statistically significant in ENHCCG. The proportion has remained fairly stable over the last four years in HVCCG but is non-significantly lower in ENHCCG than four years ago.


41

Fig. 3.3 Prevalence of Down’s syndrome in people with a learning disability

Fig. 3.4 Prevalence of Down’s syndrome in people with a learning disability, by sex

3.3.2 Physical health

• In 2017/18, the prevalence of asthma in people on the learning disability register was 6.0% in ENHCCG and 8.0% in HVCCG. In HVCCG only this is statistically significantly higher than the prevalence in the general population but is not statistically significantly different from the prevalence in all people on the learning disability register in England. In ENHCCG the prevalence has decreased in people on the learning disability register over the last four years whereas in HVCCG it has increased, although differences are not statistically significant.


42

Fig. 3.5 Prevalence of Asthma by learning disability status

Fig. 3.6 Prevalence of Asthma by learning disability status in ENHCG from 2014/15-2017/18


43

Fig. 3.7 Prevalence of Asthma by learning disability status in HVCCG from 2014/15-2017/18

• In 2017/18, the prevalence of Coronary Heart Disease (CHD) amongst people on the learning disability register was 0.8% in both ENHCCG and HVCCG. This was slightly but statistically significantly lower than the prevalence in the general population, but not statistically significantly different from all people on the learning disability register in England. Nationally, prevalence was higher amongst men with learning disabilities than women, but this was not reflected locally. Interpretation of trends over the last four years is difficult given the small numbers involved but there have been no statistically significant changes. No children or young people were affected.

Fig. 3.8 Prevalence of Coronary Heart Disease by learning disability status

• In 2017/18, the prevalence of stroke/ transient ischaemic attack (TIA) amongst people on the learning disability register was 1.6% in ENHCCG and 2.0% in HVCCG. This was not statistically significantly different from the prevalence in the general population or in all


44

people on the learning disability register in England. The prevalence increased with increasing age.

Fig. 3.9 Prevalence of Stroke or TIA by learning disability status

• In 2017/18, the prevalence of Chronic Kidney Disease (CKD) amongst people on the learning disability register was 1.2% in ENHCCG and 3.2% in HVCCG. This was not statistically significantly different from the general population or from the prevalence in all people on the learning disability register in England. Prevalence was higher in women with learning disabilities. Interpretation of trends over the last four years is difficult given the small numbers involved but there have been no statistically significant changes. This condition generally affected older patients, except in ENHCCG 3.3% of 10-17 year olds had CKD.

Fig. 3.10 Prevalence of Chronic Kidney Disease by learning disability status and sex


45

• In 2017/18, the prevalence of chronic obstructive pulmonary disease (COPD) in people on the learning disability register was 0.8% in ENHCCG and 1.4% in HVCCG. This was not statistically significantly different from the general population in either CCG. Interpretation of trends over the last four years is difficult given the small numbers, there appears to be an increasing trend in HVCCG. The prevalence increased with increasing age.

Fig. 3.11 Prevalence of Chronic Obstructive Pulmonary Disease by learning disability status

• In 2017/18, the prevalence of non-type 1 Diabetes Mellitus (largely Type 2 Diabetes Mellitus) in people on the learning disability register was 3.6% in ENHCCG and 6.8% in HVCCG. This was statistically significantly higher than the general population in HVCCG only but not statistically significantly different from the prevalence in all people on the learning disability register in England. Interpretation of changes over the last four years is difficult given the small numbers, but the prevalence has remained fairly stable. This condition generally affected older patients, except in ENHCCG 3.3% of 10-17 year olds had non-type 1 Diabetes Mellitus.

Fig.3.12 Prevalence of non-Type 1 Diabetes Mellitus by learning disability status


46

Fig. 3.13 Prevalence of non-Type 1 Diabetes Mellitus by learning disability status and sex

• In 2017/18, the prevalence of Type 1 Diabetes Mellitus in people on the learning disability register was 1.6% in ENHCCG and 0.7% in HVCCG. This was statistically significantly higher than the general population in ENHCCG only, but not statistically significantly different from the prevalence in all people on the learning disability register in England. Interpretation of changes over the last four years is difficult given the small numbers, but there has not been a statistically significant increase or decrease.

Fig. 3.14 Prevalence of Type 1 Diabetes Mellitus by learning disability status

• Glycosylated haemoglobin level (HbA1c) reflects blood glucose control over the preceding 8-12 weeks. In 2017/18, the proportion of people with diabetes on the learning disability register with a HbA1c measurement ≤75mmol/mol was 81.8% in ENHCCG and 86.6% in HVCCG. This was not statistically significantly different from the general population or the national figures. This proportion has remained fairly stable over the previous four years. However, NICE treatment targets are either 48 or 53 mmol/mol.83


47

• There was no statistically significant difference in the proportion with a recorded HbA1c in the previous 12 months in patients with learning disabilities in ENHCCG (84.6%) and HVCCG (90.5%) than in the general population.

Fig. 3.15 Percentage of patients with diabetes whose HbA1c was ≤75mmol/mol in the last 12

months, by learning disability status

• In 2017/18, the percentage of people on the learning disability register with a diagnosis of epilepsy who were on drug treatment was 47.4% in ENHCCG and 16.7% in HVCCG. This was substantially and statistically significantly higher than the general population, with a gap of 46.8% and 16.2% respectively. The percentage in ENHCCG was also statistically significantly higher than the percentage in people on the register in England as a whole. In ENHCCG only, the percentage was statistically significantly higher in women than in men. The percentage has been stable in HVCCG over the last four years and increasing in ENHCCG, although the increase from year to year is not statistically significant.

• In ENHCCG, 0% of 0-9 year olds and 56.7% of 10-17 year olds on the learning disability register had a diagnosis of epilepsy and were on drug treatment in 2017/18. In HVCCG 6.7% of 0-9 year olds and 7.9% of 10-17 year olds on the learning disability register had a diagnosis of epilepsy and were on drug treatment in 2017/18.

• In 2017/18, the percentage of people on the learning disability register with a diagnosis of epilepsy who were on drug treatment and had had their seizure frequency recorded in the last 12 months was 39.8% in ENHCCG and 28.6% in HVCCG. In both CCGs and nationally this was statistically significantly higher than in the general population. In ENHCCG only this was significantly higher than the national average (27.0%). In both CCGs this was significantly higher than 2016/17 but not than four years ago.

• However, in 2017/18 the percentage of people on the learning disability register with a diagnosis of epilepsy who were on drug treatment and had had their seizure frequency recorded in the last 12 months and were seizure free was statistically significantly lower


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than in the general population. It was 2.1% in ENHCCG and 51.2% in HVCCG. This proportion has decreased over the past four years in ENHCCG, but not statistically significantly.

Fig. 3.16 Prevalence of patients who have epilepsy and are on drug treatment, by learning

disability status and sex

Fig. 3.17 Percentage of patients with a learning disability and epilepsy who are on drug

treatment in ENHCCG from 2014/15 to 2017/18


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Fig. 3.18 Percentage of patients with a learning disability and epilepsy who are on drug treatment in HVCCG from 2014/15 to 2017/18

Fig. 3.19 Percentage of patients with epilepsy who are on drug treatment who have seizure frequency recorded in the last 12 months, by learning disability status


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Fig. 3.20 Percentage of patients with epilepsy who are on drug treatment who have seizure frequency recorded in the last 12 months, in ENHCCG from 2014/15 to 2017/18, by learning

disability status

Fig. 3.21 Percentage of patients with epilepsy who are on drug treatment who have seizure frequency recorded in the last 12 months, in HVCCG from 2014/15 to 2017/18, by learning

disability status


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Fig. 3.22 Percentage of patients with epilepsy who are on drug treatment who have been recorded as seizure free in the last 12 months, by learning disability status

Fig. 3.23 Percentage of patients with epilepsy who are on drug treatment who have been recorded as seizure free in the last 12 months, by learning disability status, in ENHCCG from

2014/15 to 2017/18


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Fig. 3.24 Percentage of patients with epilepsy who are on drug treatment who have been recorded as seizure free in the last 12 months, by learning disability status, in HVCCG from

2014/15 to 2017/18

• In 2017/18, the prevalence of heart failure in people on the learning disability register was 1.2% in ENHCCG and 1.4% in HVCCG. This was slightly but statistically significantly higher than the general population in both CCGs, but not statistically significantly different from the national prevalence for people with a learning disability. Interpretation of changes over the last four years is difficult given the small numbers, but despite slight increases in both CCGs there has not been a statistically significant change. Prevalence increases with increasing age.

Fig. 3.25 Prevalence of heart failure, by learning disability status

• In 2017/18, the prevalence of hypertension (high blood pressure) in people on the learning disability register was 7.6% in ENHCCG and 11.0% in HVCCG. This was statistically


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significantly lower than the general population in both CCGs, but not statistically significantly different from the national prevalence for people with a learning disability. Interpretation of changes over the last four years is difficult given the small numbers, but there has not been a statistically significant change. Prevalence increases with increasing age.

Fig. 3.26 Prevalence of hypertension, by learning disability status and sex

• In 2017/18, the prevalence of hypothyroidism in people on the learning disability register was 10.8% in ENHCCG and 9.2% in HVCCG. This was statistically significantly higher than the general population in both CCGs, but not statistically significantly different from the national prevalence for people with a learning disability. The prevalence was statistically significantly higher in females with learning disabilities than in males, increases with increasing age and is also higher in the learning disability group as a whole than when subdivided into patients with Down’s syndrome (in whom it is an associated condition). There has been no statistically significant change in the prevalence over the last four years in either CCG. The prevalence was higher in adults with learning disabilities.


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Fig. 3.27 Prevalence of hypothyroidism, by learning disability status and sex

• In 2017/18, the percentage of patients on the learning disability register who were recorded as being in need of palliative care or support was 0.8% in ENHCCG and 0.6% in HVCCG. This was slightly higher than in the general population but only statistically significantly in ENHCCG and was not different from the national proportion of people with a learning disability. Interpretation of trends over the last four years is difficult given the small numbers involved but there was a statistically significant decrease in ENHCCG from 2015/16 to 2016/17. No children or young people were recorded as in need of palliative care.

Fig. 3.28 Percentage of people registered as needing palliative care, by learning disability status


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Fig. 3.29 Percentage of people registered as needing palliative care in ENHCCG from 2014/15 to 2017/18, by learning disability status

Fig. 3.30 Percentage of people registered as needing palliative care in HVCCG from 2014/15 to

2017/18, by learning disability status

3.3.3 Body Mass Index (BMI) and weight status

• In 2017/18, in both CCGs people on the learning disability register were statistically significantly more likely to have had a BMI measurement in the last 15 months than the general population. In ENHCCG 76.7% had had a BMI measurement (vs. 29.4% of the general population) and in HVCCG 64.9% had had a BMI measurement (vs. 23.5%). No children aged 0-9 in ENHCCG had a BMI measurement, so this age group can’t be discussed further.


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• In 2017/18, the prevalence of obesity (BMI of 30 or greater) in people on the learning disabilities register was 32.0% in ENHCCG and 37.4% in HVCCG. This was higher than the general population, although only statistically significantly in HVCCG and not statistically significantly different from the prevalence in people on the register in England as a whole. In both CCGS, the prevalence was higher in adults than in children or young people, although the gap between people with LD and the general population is particularly great at younger ages.

• In both CCGs, and nationally, the prevalence of obesity was higher in women with learning disabilities than in men (although not statistically significantly in ENHCCG) and the gap with the prevalence of the general population was greater in females than in males. Over the last four years, the prevalence of obesity has increased in HVCCG and decreased in ENHCCG, but differences are not statistically significant.

Fig. 3.31 Percentage of people classified as obese, by learning disability status

Fig. 3.32 Percentage of people classified as obese, by learning disability status and sex


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Fig. 3.33 Percentage of people with a learning disability classified as obese, by sex

Fig. 3.34 Percentage of people with a learning disability classified as obese in ENHCCG from 2014/15 to 2017/18


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Fig. 3.35 Percentage of people with a learning disability classified as obese in HVCCG from 2014/15 to 2017/18

• In contrast, there is a lower prevalence of overweight (BMI between 25 and 29.9) amongst people on the learning disability register than the general population in both CCGs. This difference is statistically significant nationally, but not at the CCG level. This was also not the case in 10-19 year olds in ENHCCG and in all children in HVCCG. The prevalence of overweight has remained fairly stable over the past four years in both CCGs.

Fig. 3.36 Percentage of people with a learning disability classified as overweight, by learning

disability status

• In 2017/18, the prevalence of underweight (BMI of less than 18.5) amongst people on the learning disability register was 7.9% in ENHCCG and 6.0% in HVCCG. This is higher than in the general population but only statistically significantly so for HVCCG. The prevalence of underweight has remained fairly stable over the past four years in both CCGs. The


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prevalence in children and young people was much higher than in adults in HVCCG (72.7% in 0-9 year olds and 20.0% in 10-19 year olds) and in 10-19 year olds in ENHCCG (25.0%) but is even higher for children in the general population.

Fig. 3.37 Percentage of people with a learning disability classified as underweight, by learning

disability status

• In 2017/18, the prevalence of healthy weight (BMI 18.5-24.9) amongst people on the learning disability register was 34.6% in ENHCCG and 26.7% in HVCCG. This was statistically significantly lower than the general population in HVCCG only, there was no statistically significant difference in ENHCCG. This was not statistically significantly different from the prevalence in people on the register in England as a whole.

• Males with learning disabilities were statistically significantly more likely to be a healthy weight than females in HVCCG, but not ENHCCG. Males on the learning disability register in both CCGs are more likely to be a healthy weight than the general population, whereas the situation is the reverse for females. Over the last four years, the numbers in ENHCCG classified as healthy weight have increased whereas the numbers in HVCCG have slightly decreased, but differences are not statistically significant. Children aged 0-9 in HVCCG had an even lower prevalence of healthy weight.


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Fig. 3.38 Percentage of people with a learning disability classified as healthy weight, by learning disability status and sex

Fig. 3.39 Percentage of people with a learning disability classified as healthy weight, by learning

disability status


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Fig. 3.40 Percentage of people with a learning disability classified as healthy weight in ENHCCG from 2014/15 to 2017/18, by learning disability status

Fig. 3.41 Percentage of people with a learning disability classified as healthy weight in HVCCG from 2014/15 to 2017/18, by learning disability status

3.3.4 Conditions associated with learning disabilities

• In 2017/18, the prevalence of chronic constipation in people on the learning disability register was 28.1% in ENHCCG and 11.4% in HVCCG. In ENHCCG this was statistically significantly higher than the prevalence in people on the register in England as a whole (12.4%). Females had a higher prevalence in both CCGS, but this was only statistically significant in ENHCCG. In both CCGs, there was a statistically significant increase in the


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prevalence from 2015/16 to 2016/17. The prevalence was highest in the 75+ age group, particularly strikingly in ENHCCG.

Fig. 3.42 Prevalence of chronic constipation in patients with a learning disability, by sex

Fig. 3.43 Prevalence of chronic constipation in patients with a learning disability in ENHCCG from 2014/15 to 2017/18


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Fig. 3.44 Prevalence of chronic constipation in patients with a learning disability in HVCCG from 2014/15 to 2017/18

• In 2017/18, the prevalence of dysphagia (difficulty/ pain swallowing) in people on the learning disability register was 10.0% in ENHCCG and 8.7% in HVCCG. This was statistically significantly higher than the prevalence in people on the register in England as a whole (5.0%) in both CCGs. In both CCGS, there was a statistically significant increase in the prevalence from 2016/17 to 2017/18. The prevalence was higher in adults.

Fig. 3.45 Prevalence of dysphagia in patients with a learning disability


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Fig. 3.46 Prevalence of dysphagia in patients with a learning disability in ENHCCG from 2014/15 to 2017/18

Fig. 3.47 Prevalence of dysphagia in patients with a learning disability in HVCCG from 2014/15

to 2017/18

• In 2017/18, the prevalence of gastro-oesophageal reflux disease (GORD) in people on the learning disability register was 5.2% in ENHCCG and 9.8% in HVCCG. This was statistically significantly lower than the national prevalence (12.4%) in ENHCCG only. There was a higher prevalence in females than in males, but this was not statistically significant at CCG level. The prevalence has remained fairly stable in ENHCCG and has been increasing in HVCCG over the last four years, but differences from year to year are not statistically significant. In HVCCG, the prevalence is highest in the 0-9 year old age group.


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Fig. 3.48 Prevalence of GORD in patients with a learning disability, by sex

Fig. 3.49 Prevalence of GORD in patients with a learning disability, in ENHCCG from 2014/15 to 2017/18


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Fig. 3.50 Prevalence of GORD in patients with a learning disability, in ENHCCG from 2014/15 to 2017/18

3.3.5 Mental health

• In 2017/18, the prevalence of dementia amongst people on the learning disability register was 2.4% in ENHCCG and 1.5% in HVCCG. This was statistically significantly higher than the general population in both CCGs but was not statistically significantly different from the prevalence of people on the register nationally. Interpretation of trends over the last four years is difficult given the small numbers involved. No children or young people were affected, the prevalence increases with increasing age but at an earlier stage than in the general population.

Figure 3.51 Prevalence of dementia, by learning disability status


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Fig. 3.52 Prevalence of dementia by learning disability status, in ENHCCG from 2014/15 to 2017/18

Fig. 3.53 Prevalence of dementia by learning disability status, in HVCCG from 2014/15 to 2017/18

• In 2017/18, the prevalence of depression amongst people on the learning disability register was 8.4% in ENHCCG and 14.8% in HVCCG. This was statistically significantly higher than the general population in HVCCG only, in ENHCCG it was lower than the general population but not statistically significantly. The prevalence was higher in women with learning disabilities than in men in both CCGs and nationally (although this was not statistically significant in ENHCCG). In ENHCCG only, the prevalence was statistically significantly lower than the prevalence of people on the register nationally. The prevalence has remained fairly stable over the last four years. No children or young people with learning disabilities were affected in either CCG.


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Fig. 3.54 Prevalence of depression, by learning disability status and sex

Fig. 3.55 Prevalence of depression by learning disability status, in ENHCCG from 2014/15 to 2017/18


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Fig. 3.56 Prevalence of depression by learning disability status, in HVCCG from 2014/15 to 2017/18

• In 2017/18, the prevalence of severe mental illness amongst people on the learning disability register was 5.2% in ENHCCG and 9.2% in HVCCG. This was statistically significantly higher than the general population in both CCGs but was not statistically significantly different from the prevalence of people on the register nationally. Interpretation of trends over the last four years is difficult given the small numbers involved. The prevalence was higher in adults.

Fig. 3.57 Prevalence of severe mental illness, by learning disability status and sex


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Fig. 3.58 Prevalence of severe mental illness, by learning disability status in ENHCCG from 2014/15 to 2017/18

Fig. 3.59 Prevalence of severe mental illness, by learning disability status in HVCCG from 2014/15 to 2017/18

3.3.6 Health checks and tests

• In 2017/18, 86.8% of people on the GP Learning disability register in ENHCCG had had a blood pressure measurement in the last five years and 82.0% in HVCCG. This was statistically significantly higher than the general population but not statistically significantly different from the national figures. The proportion of people on the learning disabilities register with a blood pressure measurement in the last five years has remained stable over the previous four years.


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Fig. 3.60 Percentage of patients with a blood pressure measurement in the last 5 years, by learning disability status

Fig. 3.61 Percentage of patients with a blood pressure measurement in the last 5 years, by learning disability status and sex

• An annual health check should be offered to all patients with learning disabilities aged 14 and over. In 2017/18, 70.7% of people on the GP Learning disability register in ENHCCG had received an annual health check in the previous 12 months and 64.5% in HVCCG. It is worth noting that a small number of the denominator used for this proportion will be aged under 14 and therefore not eligible, giving a slight underestimate of coverage. This was statistically significantly higher than the percentage of people with learning disabilities who had received an annual health check in England as a whole.

• This was also higher than the previous year. In 2016/17 the proportion of eligible adults with a learning disability having a GP health check in Hertfordshire as a whole was 57.0%. Hertfordshire was statistically significantly higher than England (48.85%). There were 7


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comparator areas statistically significantly lower and 1 comparator area statistically significantly higher than Hertfordshire.

• The percentage receiving a health check has increased in both CCGs over the past four years, with a statistically significant increase in ENHCCG from 2016/17 to 2017/18. Coverage is statistically significantly higher in both CCGs than it was three years ago. The coverage is lower in the 10-19 age group, particularly in HVCCG, however it is difficult to determine how much of this group is aged over 14.

Fig. 3.62 Percentage of patients with learning disabilities who received an annual health check

in the last 12 months

Fig. 3.63 Percentage of patients with learning disabilities who received an annual health check in the last 12 months in ENHCCG, from 2014/15 to 2017/18


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Fig. 3.64 Percentage of patients with learning disabilities who received an annual health check in the last 12 months in HVCCG, from 2014/15 to 2017/18

3.3.7 Cancer screening and prevalence

• In 2017/18, the proportion of eligible women (aged 50-69) on the learning disability register who received breast cancer screening was 50.0% in ENHCCG and 52.4% in HVCCG. This was lower than the general population, but only statistically significantly so in HVCCG. This was not statistically significantly different from the national estimates. The proportion has remained fairly stable over the last four years in both CCGs and nationally.

Fig. 3.65 Percentage of female patients aged 50-69 who received breast cancer screening in

the last 5 years, by learning disability status


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Fig. 3.66 Percentage of female patients aged 50-69 who received breast cancer screening in the last 5 years, by learning disability status, in ENHCCG from 2014/15 to 2017/18

Fig. 3.67 Percentage of female patients aged 50-69 who received breast cancer screening in the last 5 years, by learning disability status, in HVCCG from 2014/15 to 2017/18

• In 2017/18, the proportion of eligible women (aged 25-64) with learning disabilities who received cervical screening was 16.1% in ENHCCG and was 32.6% in HVCCG. This was substantially and statistically significantly lower than the general population in both CCGS, with a gap of 65.6% in ENHCCG and 44.6% in HVCCG. There was no statistically significant difference between the proportion with learning disabilities receiving screening in HVCCG and nationally, but ENHCCG was statistically significantly lower than nationally. The proportion screened has remained fairly stable over the last four years.


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Fig. 3.68 Percentage of eligible female patients aged 25-64 who received cervical cancer screening in the last 5 years, by learning disability status

Fig. 3.69 Percentage of eligible female patients aged 25-64 who received cervical cancer screening in the last 5 years, by learning disability status, in ENHCCG from 2014/15 to 2017/18


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Fig. 3.70 Percentage of eligible female patients aged 25-64 who received cervical cancer screening in the last 5 years, by learning disability status, in HVCCG from 2014/15 to 2017/18

• In 2017/18, the proportion of eligible people (aged 60-69) on the learning disability register who received colorectal cancer screening was 95.2% in ENHCCG and 88.7% in HVCCG. This was not statistically significantly different from the general population but in HVCCG was statistically significantly higher than the proportion of people on the learning disability register screened nationally. The proportion screened has remained fairly stable over the last four years.

Fig. 3.71 Percentage of eligible patients aged 60-69 who received colorectal cancer screening

in the last 5 years, by learning disability status


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Fig. 3.72 Percentage of eligible patients aged 60-69 who received colorectal cancer screening in the last 5 years, by learning disability status and sex

• In 2017/18, the prevalence of cancer amongst people on the learning disability register was 1.2% in both ENHCCG and HVCCG. This was lower than the general population, but only statistically significantly in HVCCG. This was not statistically significantly different from the prevalence on the register nationally. Interpretation of trends over the last four years is difficult given the small numbers involved but there have been no statistically significant changes, in contrast to rising prevalence in the general population. No children or young people with learning disabilities were affected.

Fig. 3.73 Prevalence of cancer, by learning disability status


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Fig. 3.74 Prevalence of cancer, by learning disability status and sex

3.3.8 Vaccinations

• Seasonal flu vaccination is recommended for certain groups at greater risk of serious complications, this includes people with learning disabilities. In 2017/18, the percentage of people with a learning disability who had a flu vaccination in the last 12 months was 56.2% in ENHCCG and 52.2% in HVCCG. This was statistically significantly higher than the coverage for people with learning disabilities nationally (44.7%). Comparison data for the general population was not provided.

• Females with learning disabilities had higher vaccination rates than males, but this was not statistically significant in ENHCCG. In both CCGs, vaccination rates were much higher in older age groups, which may be because some of these patients fall under another vaccination target group (aged 65 and over). In both CCGs, rates of vaccination have slightly improved over the last four years but differences from year to year are not statistically significant. Vaccination rates were 50.0% in 0-9 year olds and 53.3% in 10-19 year olds in ENHCCG and 38.1% and 27.5% respectively in HVCCG.


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Fig. 3.75 Percentage of patients with a learning disability who had a flu vaccination in the last 12 months, by sex

Fig. 3.76 Percentage of patients with a learning disability who had a flu vaccination in the last 12 months, in ENHCCG from 2014/15 to 2017/18


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Fig. 3.77 Percentage of patients with a learning disability who had a flu vaccination in the last 12 months, in HVCCG from 2014/15 to 2017/18


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4.0 Solutions

4.1 What works? 4.1.1 Children and young people 4.1.1(i) Primary care

• See 4.1.2(i) 4.1.1(ii) Challenging behaviour

• See 4.1.2(ii) 4.1.1(ii) Management of mental health problems in people with learning disabilities

• See 4.1.2(iii) 4.1.1(iv) Children and young people with disabilities & severe complex needs

• NICE guidance for integrated health & social care support, including service guidance, for children and young people with disabilities and severe complex needs is under development. It is due to be published in 2021.84

4.1.1(v) Education

• The Special Educational Needs (SEN) Code of Practice (2001) and the Education Act (1996) set out the duties of local education authorities, schools and early education settings with regard to the special educational needs of pre-school children, including children below the age of two, those of compulsory school age and young people aged 16-19 who are registered at a school.

4.1.1(vi) Early years support

• The Institute of Health Equity report highlights the importance of improving early years experiences and providing support, enabling close parental relationships and tackling behavioural challenges and mental health problems.7

4.1.1(vii) All Our Health

• See section 4.1.2(v)

4.1.1(viii) Tackling inequalities

• See section 4.1.2(vi)


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4.1.1(ix) Reasonable adjustments

• See section 4.1.2(ix)

4.1.2 Adults 4.1.2(i) Primary care

• There are two Quality Outcome Framework (QOF) indicators relevant to the care of people with Learning disabilities in General practice. The first is that the General practice establishes and maintains a register for patients with learning disabilities (of all ages).85

• The second QOF indicators is the percentage of patients on the Learning Disability register with Down's Syndrome aged 18 and over who have a record of blood TSH in the previous 15 months (excluding those who are on the thyroid disease register).85

• A Clinical Commissioning Group (CCG) improvement and assessment framework contains two measures specific to learning disabilities:

o reliance on specialist inpatient care for people with learning disabilities o proportion of people with learning disabilities on the GP register receiving an

annual health check.86 4.1.2(ii) Challenging Behaviour

• NICE guidance was published in 2015 on challenging behaviour and learning disabilities for both adults and children (Box 3).87 The definition used for challenging behaviour is:

“Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.”88

• NICE describe challenging behaviour as: “Behaviour [that] is a challenge to services, family members or carers …. This behaviour often results from the interaction between personal and environmental factors and includes aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. It can also include violence, arson or sexual abuse, and may bring the person into contact with the criminal justice system.”87

• It is relatively common for people with learning disabilities to develop a challenging behaviour, particularly those with more severe disabilities. It is also more common in teenagers and people in their early twenties. Prevalence is around 5–15% in educational, health or social care services for people with a learning disability.87 The behaviour may be context-specific and interpreted differently by different people.


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Box 3. NICE guidance on Challenging behaviour in people with learning disabilities87 This guideline includes recommendations on:

o general principles of care o support and interventions for family members or carers o early identification of the emergence of behaviour that challenges o assessment o psychological and environmental interventions o medication o interventions for co-existing health problems and sleep problems.

• There is also NICE guidance available for services working with children, young people and adults with learning disabilities who have challenging behaviours.89 The key emphasis of this guideline is supporting people with learning disabilities and challenging behaviour to live where and how they want, with a shift to community care, preventative services and early intervention and support for families and carers. Recommendations for the design and delivery of services include ways to:

o support people to have good physical and mental health and emotional wellbeing o maximise people's choice and control o promote person-centred care and support o help children, young people and adults take an active part in all aspects of daily life

that they choose, based both on what they can do and what they want to do o identify when children, young people and adults are at risk of developing

behaviour that challenges, so that support can be offered as early as possible.89

• A NICE quality standard for challenging behaviour in people with learning disabilities is also available that includes annual health checks, personalised care, a care coordinator and parent-training for parents and carers of children under 12.88 A service model for people with learning disabilities and behaviour that challenges is due to be published by NICE in 2019.

• Transforming care refers to a national plan, published in 2015, to develop community services and close inpatient facilities for people with learning disabilities and/or autism who display behaviour that challenges, including those with a mental health condition.90 Plans centred on reducing inpatient capacity, reducing length of stay for hospital admissions and enhancing community provision. In order to achieve this, 49 transforming care partnerships (commissioning collaborations of CCGs, NHS England’s specialised commissioners and local authorities) were set up to develop and implement local plans.

4.1.2(iii) Management of mental health problems in people with learning disabilities

• A number of mental health problems are more common in both children and adults with learning disabilities. NICE guidance for the prevention, identification, assessment and management of mental health conditions in children, young people and adults with any degree of learning disabilities was published in September 2016 (Box 4).91 This guideline covers all settings including health, social care, education and criminal justice. The


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guidance aims to improve assessment and support, and to increase the involvement of people with learning disabilities, and their carers and families, in their care.

• A NICE quality standard for the prevention, identification, assessment and management of mental health conditions in people with learning disabilities is also available. This includes a quality statement on annual health checks; tailoring of interventions to the person’s preferences, needs and level of understanding; the need for a keyworker; and review by a specialist in mental health problems and learning disabilities.92

Box 4. NICE guidance on prevention, assessment and management of mental health conditions in people with learning disabilities91 The guideline includes recommendations on:

o organising and delivering care o involving people in their care o prevention- including social, physical environment and occupational interventions o annual GP health checks o assessment o psychological interventions and how to adapt these for people with learning

disabilities o prescribing, monitoring and reviewing pharmacological interventions.

• The guidance can be used in conjunction with NICE guidance on specific mental health problems, but extra considerations include:

o differences in the presentation of mental health problems o differences in communication needs o decision-making capacity o the severity of the learning disability o the treatment setting o the use of interventions specifically for people with learning disabilities. o involving family members and carers including the support and interventions

available for them.91 4.1.2(iv) Care and support of people growing older with learning disabilities

• NICE guidance for the care and support of people growing older with learning disabilities was published in April 2018 (Box 5).39 This guidance covers topics such as identifying changing needs, planning for the future, and delivering services including health, social care and housing. The aim of this guidance is to ensure people with learning disabilities have the support required to access the services they need as they get older.

• A NICE quality standard for the care and support of people growing older with learning disabilities is due to be published in May 2019.


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Box 5. NICE guidance for the care and support of people growing older with learning disabilities39 The guidelines contain recommendations on:

o organising and delivering services o identifying and assessing care and support needs o planning and reviewing care and support o identifying and managing health needs o end of life care o staff skills and expertise.

• This guidance is aimed at helping commissioners and providers to identify, plan and provide for the care and support needs of people growing older with learning disabilities and their families and carers. No age limit is applied, in recognition of the fact that people with learning disabilities experience age-related health and social needs at varying and generally younger ages than the general population. The importance of annual health checks and personalised plans is emphasised in the guidance.39

• The National Development Team for Inclusion have also published a toolkit for health and social care commissioners on supporting older people with learning disabilities.38 This toolkit covers knowing about and planning for the local population of older people with learning disabilities, information and advice for older people and their families, accommodation and support, support to remain active and maintain relationships, support with health and support at the end of life.

4.1.2(v) All Our Health

• Public Health England published guidance on how to apply the All Our Health principles in the context of learning disabilities.2 All Our Health is a framework designed to be used by all healthcare professionals to embed public health principles of health protection, prevention and health promotion into practice. The key principles of the learning disabilities guidance are to ensure all people receive “care based on their unique needs, that is appropriate in its design and effective in its delivery.”2

• The guidance contains core principles for health care professionals (Box 6), tips for communicating with people with learning disabilities, information about interventions available at the population, community and individual/family level and refers healthcare professionals to the key guidance available. The framework promotes clinicians becoming learning disability aware, supporting patients with learning disabilities to access services, health checks and flu vaccinations and involving patients and carers in treatment.


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Box 6. Core principles for Healthcare professionals, Learning disabilities: applying All Our Health2

1. Know the person before you count chromosomes. 2. Network with the professional learning disability community. 3. If the patient brings a health passport don’t just file it. The health passport will

enable you to have a greater understanding of the person and their strengths and needs, to provide the right care and treatment the first time. Ask the family about the passport.

4. Capacity should be considered for every decision and or action that you take with a person with a learning disability. If capacity is doubted, always test capacity and work with the 5 key principles of the Mental Capacity Act at all times.

5. Know the needs of individuals by reviewing and keeping up to date with health action plans and health passports.

6. Ensure that people are registered appropriately as having a learning disability on primary care registers.

7. Check if information is available through the summary care record with additional information.

8. Prompt and support individuals to take up annual health checks. 9. Make sure you and other health staff are aware that making reasonable

adjustments for this group to enable them to access health services is a legal responsibility, and that this is embedded in everyday practice.

4.1.2(vi) Tackling inequalities

• The Health Equality Framework (HEF) is an outcomes framework based on the evidence-based determinants of health inequalities for people with learning disabilities. The HEF is for use in all specialist learning disability services but can also be applied to all services to assess their effectiveness in tackling health inequalities for people with learning disabilities. The resulting information can be aggregated on a team, locality or service basis, and is therefore of use to commissioners, health and wellbeing boards and public health.2

• The Institute for Health equity report also highlights the importance of reducing inequalities by working on the wider determinants of health for this group. In particular, reducing poverty, improving living environments, increasing employment programmes and increasing social integration.7 A number of examples from practice are explored. The report includes eleven key recommendations across the life course (Box 7).


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Box 7. A fair, supportive society, Institute of Health Equity. Summary of recommendations7 1. Multi-departmental evidence based integrated strategy, that supports households

holistically throughout life. 2. Integrated multi-departmental working at national and local level to improve outcomes

through action on specific social determinants of health. 3. Improve early identification rates. Rationalise information-sharing across agencies and

registers. 4. Department of Education and Health and Social Care Commissioners should lead the

change in the ‘choice architecture’ by removing unhealthy options at institutional and care settings, and supporting parents to do the same.

5. Department of Education and NHS England adopt the ‘equal right to sight approach’ to appropriately design eyesight and hearing tests for all pupils in special and mainstream schools within their first year of joining.

6. Department of Education and NHS England formally require that actions are integrated into the EHC plan from the beginning to ensure improved uptake of screening tests and actions to improve health behaviours and social determinants.

7. Multi-departmental working to ensure that best practice supported employment offers are available.

8. Government should undertake a systematic review of how it supports people with a learning disability in terms of access to work, homes, education, benefits and health and care services including review of the reach of the Education, Health and Care Plans (EHCP) and personal budgets.

9. Coordinated campaigns for greater integration of people with learning disabilities into mainstream society, to reduce discrimination including more integration with mainstream schooling and mandates/incentives for employers.

10. A hearts and minds campaign to improve attitudes towards people with learning disabilities alongside a review of general attitudes and perceived safeguarding requirements/procedures within professional community and educational settings.

11. Set up friendship support groups to be made available to all people with learning disabilities. As a part of EHC plans, children and young people should be linked with friendship groups and networks. Wellbeing plans for adults should consider their social interactions. Professionals should be required to link people with friendship support groups.

4.1.2(vii) Social care

• ‘Better health for people with a learning disability: what social care staff need to know about GP learning disability registers, Annual Health Checks and the Summary Care Record’ is a guidance document for social care providers.93 It focusses on the role they can play in making sure people with learning disabilities:

o are on the GP learning disability QOF register o get Annual Health Checks o have additional information on their Summary Care Record that says what

reasonable adjustments they need.


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• There is also guidance from Public Health England for social care staff on how to help people with LD get better access to health services.94 This includes a health charter and guidance for its implementation covering key topics including reasonable adjustments, ensuring people are on the GP register, staff training and advocacy, the Mental Capacity Act, annual health checks, common health problems, overmedication, health action plans and hospital passports, diet and exercise, screening, hospital admissions, pain management, dementia and palliative/end-of-life care. There is also a self-assessment tool to enable organisations signed up to the health charter to measure progress and develop an action plan for improvements.

4.1.2(viii) Learning disability services

• The Learning Disabilities Good Practice Project identified key performance indicators for services working with people with learning disabilities:

o “Co-production – involving [people] in planning their services and in some cases delivering them.

o A capabilities approach to disability – looking at people’s strengths and what they can do, rather than looking at what people cannot do for themselves.

o Community capacity building – where people can gradually rely more on community-based support.

o A move towards more integrated services, bringing in care, health and often housing and leisure.

o A commitment to personalisation, not as a cost-cutting measure.”95

• Common themes included services which work together with individuals from the start and involve individuals, family and carers in planning services, help people to be part of their community and provide support to carers and support staff. Specific examples of good practice were identified including:

o a service designed to improve access to public health services o a quality checking service that included visits from people with learning disabilities o personalised living support for people with complex needs o transition support for young people with complex needs, to support community

living and engagement o sharing life histories of people with learning disabilities and academic partnerships o a holistic approach to supporting people with Down’s syndrome and early onset

dementia: early diagnosis, staff training, awareness.95

• One of the further examples of good practice identified was the Hertfordshire Partnership University NHS Foundation Trust’s ‘Obtaining Feedback through Talking Mats’ project. The project evaluated how inpatients with autism, severe learning disabilities and limited communication could give feedback using a communication framework called Talking Mats to increase engagement and availability of activities. Training was been given to staff in the Trust and advocates nationally.95


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4.1.2(ix) Reasonable adjustments

• Under the Equality Act 2010, all organisations must make reasonable adjustments to support those with a disability to access services.96 A reasonable adjustment is an adjustment which an organisation makes to enable a disabled person to be able to live and receive care without being at a disadvantage in comparison to others.97 Public sector organisations are required to adjust services to ensure they are accessible to disabled people as well as everybody else and that accessible information is provided. For example, people with learning disabilities may require:

o “clear, simple and possibly repeated explanations of what’s happening and of treatments

o help with appointments o help with managing issues of consent in line with the Mental Capacity Act.”98

• Details of a person’s learning disability, communication needs, details of support workers, carers and family, details of anyone with decision-making powers for the individual and details of the annual health check results or health action plan are amongst the information that may be included on a person’s summary care record for information sharing between organisations subject to their consent or a best interests decision.98

• Reasonable adjustments may take many forms including physical adjustments to buildings, help with communication, extra time for appointments and specific interventions. Public Health England produces a range of specific guidance for making reasonable adjustments to various services and to care delivered for people with a learning disability.99 This includes guidance on the following specific topics:

o Annual health checks o Blood tests o Cancer screening o Constipation o Dementia o Dysphagia o Obesity, weight management o Oral care o Pharmacy o Postural care services o Substance misuse.

• There is also guidance available from PHE on reasonable adjustments for flu vaccination and guidance for GP surgeries and health and social care staff on how to increase uptake.100

• The NHS Accessible Information Standard is also in place to make sure people with a learning disability or other disability get information they can access and understand, and any communication support they need from services. Compliance is a legal requirement for all NHS organisations under the Health and Social Care Act 2012.101


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• The Easy Health website published guides and easy to read information that healthcare professionals can use to help them explain health issues and treatments to their patient with learning disabilities.102

4.1.2(x) Guidance for the care of people with learning disabilities within the criminal justice system

• In 2015, NHS England published guidance for all prison healthcare staff managing a patient with known or suspected learning disabilities.97 The guidance was designed to ensure that best practice and community healthcare policies are applied and that barriers to accessing healthcare are reduced for this group. The guidance also aims to increase staff awareness of the health and healthcare needs of this group. The guidance focusses on reducing inequalities in health and access to healthcare.

• The guidance covers: o Making reasonable adjustments to meet the communication and support needs of

people with learning disabilities, such as easy read information and environmental adjustments

o Decision-making, consent and assessing capacity o Health action plans, patient passports and annual health checks o The health needs and lifestyle issues for people with learning disabilities and health

promotion o Use of the Health Equality Framework outcome indicators in five domains: Social

determinants of health, genetic and biological determinants, communication and health literacy, personal health behaviour and lifestyle risks and deficiencies in access to and quality of health provision

o Screening for learning disabilities o Social care support in prison and specific considerations when planning care o The role of learning disability nurses and staff training o Multi-agency care planning and pathways and coordination with other services

including community learning disability teams. o Consideration of planning for leaving prison or the need for transfer to a

community hospital.97

• Further guidance is available from the Department of Health for all professionals working with offenders with learning disabilities within the criminal justice system.103 The handbook aims to help professionals to recognise when someone might have a learning disability, improve their communication skills and support for a person with learning disability, understand the health and care needs of people with learning disabilities, establish and maintain links with local LD services and be aware of the relevant legislation in place to protect and support people with learning disabilities.

4.1.2(xi) Guidance for healthcare professionals

• The Royal College of Nursing (RCN) provides guidelines for clinical practice and workforce strategies. Their recommendations are set out in Box 8.


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• There is also guidance available from RCN on providing high quality nursing care to people with learning disabilities in mental health services.104 The GMC also provides a number of resources for medical professionals to optimise clinical care for people with learning disabilities, including guidance on communication, working with carers, discrimination and consent and capacity issues.105

• Public Health England has also produced specific guidance for the care of people with learning disabilities when in hospital with key guidance for carers/support staff and for hospitals before, during and at the end of admissions.106

Box 8. Connect for Change: an update on learning disability services in England, RCN Recommendations, 2016107 Workforce recommendations:

• A long-term workforce strategy that connects workforce planning to the transformation and delivery of services for children and adults with learning disabilities.

• Every acute hospital should employ at least one Learning Disability Liaison Nurse. By 2020/21 all acute hospitals should have 24-hour Learning Disability Liaison Nurse cover.

• Up-skill all general nursing staff to care for those with learning disabilities and/or autism, or those who display behaviour that challenges.

• An increase in the number of learning disability student nurse training places to grow an appropriately skilled workforce.

Services recommendations:

• Ensure that quality community services are commissioned to support the appropriate transition of people from inpatient care to living more independently in the community.

• Establish long-term commissioning arrangements of community services to protect children and adults who rely on vital services in the community.

• Newly commissioned services in the community must provide support to children and adults, and those who care for them, to help prevent crises, and not just be available at crisis point.

• Positive behaviour support to be embedded across organisations and training to be provided to those who may be caring for someone who presents behaviour that challenges.

4.1.2(xii) The Green Light Toolkit for mental health services

• The Green Light Toolkit provides a tool for auditing and improving mental health services so that they are effective in supporting people with learning disabilities and people with autism.108 This toolkit can be used to assess the current care for people with learning disabilities and to make improvements centring on various aspects including integrated care, personalised care and coproduction, staff training, communication and accessible information, care plans, safeguarding and assessment amongst others.


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4.2 Local services and approaches 4.2.1 Children and young people 4.2.1(i) Local strategies

• There is currently no strategy specific to children and young people with a learning disability in Hertfordshire, although there is a Special Educational Needs and Disability Five Year Strategy 2018-2023.109 The strategy is monitored by the SEND Executive board which includes teachers and parent/carers. The five strategic outcomes of the strategy are presented in Box 9.

Box 9. Strategic outcomes of the Special Educational Needs and Disability Five Year Strategy 2018-2023109 1. All schools, early years settings, colleges and services provide quality

provision that meets the needs of children and young people with SEND locally.

2. Short- and long-term outcomes for children and young people with SEND are improved and there is evidence of their achievements and progress socially, emotionally and academically.

3. Communication between the local authority, parents, children and young people, and schools, early years settings, colleges and services is good, engendering trust, confidence, respect and constructive partnership working.

4. Available resources are managed through a transparent approach that is fair, meets local needs and achieves best value for money.

5. The local authority works proactively and collaboratively with parents, young people, schools, early years settings, colleges and other partners using coproduction to improve service planning, design, delivery and review.

4.2.1(ii) SEND local offer

• Hertfordshire's SEND Local Offer is a dedicated website with information, support, services and activities available for children and young people with special educational needs, and their families in the county. Parent or carer representatives are included in the Hertfordshire Local Offer Stakeholder Group, which ensures co-production remains a focus in local work.

• The local offer website contains advice and guidance on finance and benefits for people with SEND. This includes information on direct payments, personal budgets, personal independence payments for those aged 16 and above, funding for educational settings and other benefits. More information and advice can be sought from the 0-25 Together team. Direct Payments offer flexible support managed by the family to meet the assessed need.


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• There are a number of both SEND and mainstream services, in addition to those discussed below, which may be used by children and young people with a learning disability. This includes the Central Attendance and Employment Support team who support children with school attendance, the Communication and Autism team, the Deafblindness team, Educational psychologists, the Education support for Medical absence team, the Hearing Impairment team, Hertfordshire Steps (positive behaviour management), the Physical and Neurological Impairment specialists, the Speech, Language and Communication Needs team and the Visual Impairment team. Full details of the services offered can be found on the SEND local offer website.

• Hertfordshire’s Professional Promise sets out the approaches taken in SEND services in Hertfordshire and acts as a set of standards for professionals working with children with SEND. It highlights the importance of person-centred working and was developed with young people, families and professionals.110

• The SEND local offer is in the initial stages of a transformation process to improve efficiency and reach of services. This will centre on three key aspects:

o Transforming local delivery networks o Maximisation of the benefits of digital technology o Preparing for adulthood (independent living, employment and training).

4.2.1(iii) 0-25 Together service

• In Hertfordshire, the 0-25 Together service is a social care and health service for young people who have physical and/or learning disabilities. The service delivers social work functions for children and adults up to age 25 as well as a community nursing service for adults with learning disabilities aged 18 to 25.111

• The service is a domiciliary service which works across Hertfordshire. Referrals can be made by professionals or members of the public and the service supports people whose disability has a low, moderate or severe impact on their lives.

• 0-25 Together provides many services including information provision and advice, signposting and linking to other services or community resources, short breaks, direct payments, carer and family assessments, day opportunities, preparation for adulthood, supported accommodation, Learning disability nursing input and intensive family work.

4.2.1(iv) SEND Brokerage Service

• The SEND brokerage service work closely with the 0-25 Together service to source and arrange packages of care for children and young people with SEND and their families. For instance, the service works to arrange direct payments for children, community based short breaks and overnight short breaks and Homecare.


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4.2.1(v) SEND Information Advice and Support Service

• This service provides confidential information, advice and independent support to children and young people with SEND, and to their parents or carers. They provide assistance on a range of topics including SEND policy and practice; local services; personalisation and personal budgets; legislation on SEND; complaints and meditation; Education, Health and Care (EHC) needs assessments; and plans and training and events. They also help clients to prepare for meetings or attend meetings or visits when appropriate.110

• Other sources of support include the Kids Hubs which provide an information and support service for all parents of children and young people with additional needs, aged 0-19 across Hertfordshire. There are two hubs, based in Hertford and in Watford, but support is provided to families from across the county. The service offers support and advice; help to find activities, groups and training; support at meetings and with relevant forms and letters; signposting; information about the Short Breaks Local Offer and support using the online system; weekly 'stay and play' sessions as part of the Toy and Equipment Library; and outreach Toy and Equipment Library sessions at sites across Hertfordshire.

• There are also a range of support groups and networks available for children and families in Hertfordshire, both for all types of SEND and for specific conditions. For details see the Hertfordshire SEND local offer website.

4.2.1(vi) Education, Health and Care Plans

• An education, health and care plan (EHCP) is a legal document which outlines any additional support a child may require to meet their special educational needs, above the usual support available in mainstream educational settings. Children and young people may have an EHCP up until the age of 25 if they remain in further education, or the plan can be stopped following annual review.112

• An assessment is undertaken to determine if the child or young person needs an EHCP. An assessment can be requested by the child’s parent or by the young person themselves if aged 16-25 and is done with the child’s school, a doctor, health visitor or nursery worker. If a request for an assessment is refused, or a decision is made not to create an EHCP, then a process of mediation can be entered into or an appeal can be made to the Special Educational Needs and Disability Tribunal.113

• Previously, some children had statements of SEN and some had EHCPs. The process of transferring all statements to EHCPs was completed by 1 April 2018. EHCPs have the same legal protection as the previous Statements of SEN.

4.2.1(vii) SEN support in education

• SEN support is provided by childminders, nurseries, schools and colleges. SEN support can be suggested by the education/care setting or by the parent/carer. First an assessment is done, then a plan made for SEN support which is implemented and then the outcomes reviewed regularly. Children with more complex needs may need an EHCP.


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• Every school must have a qualified teacher designated as the special educational needs coordinator (SENCO).

4.2.1(viii) Early years and childcare

• There are several sources of support for children aged 0-4 with SEND and their families. Family centres can provide support and advice (see section 4.2.1 (xi)). The SEND specialist advice and support service provides support for children under 5, for parents and also for childcare providers and schools to meet the child’s needs. There are four teams of specialist advisory teachers and workers across the county. They also work to support transition to school settings.

• The team can also refer children aged 0-3 to Early Years Specialist Development Centres. There are five centres in Hertfordshire, each child has an allocated 0 - 5 Specialist Advisory Teacher. The centres offer various services including weekly (term time) play-based family sessions (where assessment and specialist teaching are offered to help increase children’s progress and development), flexible therapy services, help to access local activities and multi-professional meetings.

4.2.1(ix) Schools and colleges

• Children with learning disabilities may attend mainstream or special schools. Every school is expected to have their own plan outlining how they will improve accessibility for SEN pupils and publish a SEN information report on provision for pupils with SEND. ‘About Me’ is a template for schools and colleges to get and keep key information about a child or young person with SEN, so they can effectively meet their needs.

• Special schools provide for pupils who have complex and severe special educational needs and may be specifically designed, staffed and resourced as such. Some children and young people will be entitled to travel assistance to and from school and some (if included in the EHCP or in exceptional cases) may be entitled to free transport.

• Schools and early years settings work in Delivering special provision locally (DSPL) areas which provide a range of support. DSPL is a Hertfordshire wide partnership approach of area groups that include parent, carers, educational settings, local authority and other agencies working together to meet the support needs of children and young people with SEN. The aim is to meet needs close to home, use resources effectively, improve choice and outcomes. A Joint Area SEND Inspection found that the DSPL Area groups were well established and starting to make a positive difference to outcomes.109

• The nine areas are: o Area 1 - Hitchin, Letchworth, Baldock and Royston o Area 2 - Stevenage o Area 3 - Bishop’s Stortford, Sawbridgeworth, Buntingford, Watton-at-Stone,

Hertford and Ware o Area 4 - Hoddesdon, Broxbourne and Cheshunt o Area 5 - Welwyn Garden City and Hatfield (excluding south Hatfield villages)


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o Area 6 - Potters Bar (including south Hatfield villages) and Borehamwood o Area 7 - Harpenden and St Albans o Area 8 - Berkhamsted, Tring, Hemel Hempstead and Kings Langley o Area 9 - Watford, Three Rivers, Bushey and Radlett.

4.2.1(x) Short breaks, shared care and home care

• Short breaks are part of the Hertfordshire SEND local offer and give children the opportunity to spend time out with others socialising and doing activities whilst supported by a trained worker. There are a range of activities offered by various providers.110

• Residential short breaks are available for some children and young people, particularly if they require support throughout the night and have complex medical or behavioural needs. A residential short break may be provided in a community residential setting or the home of an approved carer. This is available only once a social work assessment of need has been completed via a referral through the 0-25 Together Service.

• Shared care provides short breaks to children and young people aged 4-18 within other family settings, all carers have to be approved following training and a Disclosure and Barring Service (DBS) check and have regular supervision and training updates. Carers are carefully selected to meet the needs of the child.

• Home care support is available for children/young people and their families when they need extra help at home with personal care or with challenging behaviour. Home care support is mainly provided by four different lead providers across the county in four different areas: North Herts and Stevenage; East Herts, Broxbourne and Welwyn/Hatfield; St Albans and Dacorum; Watford, Three Rivers and Hertsmere. This is in line with the 0-25 Together Team areas and designed to enhance consistency of care. Home care is provided as either domiciliary (in the home) personal care or ‘community enabling care’ (outside the home) to support the child/young person to go out and take part in activities in the local community.

4.2.1(xi) Family Centre Service

• In Hertfordshire, family centres are available to provide support for all families, not just for families of children with SEN. The centres provide support throughout infancy and childhood and provide services such as antenatal classes, baby feeding support, family learning courses and local parenting courses, parenting support, play sessions, toy libraries. Health visitors and school nurses are part of the service and the service can also help with finding childcare and applying to primary school.

4.2.1(xii) NHS services

• Aside from the services and approaches listed below, the SEND local offer has information and signposting to a range of health services and public health services which may be used by children with learning disabilities, such as the children’s hearing service, the children and young people's epilepsy service East and North Herts, children’s speech and language


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therapy, children’s physiotherapy and occupational therapy and the young people’s health transitional service amongst others.110

• The children’s continuing care team include support workers and nurses who provide specialist nursing care to children with complex health needs in the community. The team offer individualised packages of care often within the home and also provides specialised training in a variety of settings to meet the needs of children who require clinical nursing care within these environments.114 There is an East and North Hertfordshire team and a West Hertfordshire team.

• The Positive Behaviour Autism Learning Disability and Mental Health Service (PALMS) is a cross-county service which provides a specialist multi-disciplinary approach to children and young people aged 0-19 who have a global learning disability and/or Autistic Spectrum Disorder and their families in a variety of community settings. The service works to keep children and young people with their families and to support families with the challenges they experience.115 The service provides intervention and intensive support to families reaching crisis for families of children with additional behavioural challenges and/or emotional or mental health needs which cannot be met by mainstream services.

• The special care dental service provides dental care for patients with special needs who are unable to access dental care elsewhere. They have four clinics at Watford, Letchworth, Hemel Hempstead and Hoddesdon and there is also a general anaesthetic service at the Lister hospital, Stevenage. Patients with a diagnosed moderate/severe learning disability who cannot be managed in general dental practice are eligible for the service and the service also provides screenings at special schools.106

• Healthwatch carried out public engagement about access to dental care in Hertfordshire, including focus groups with carers of people with LD, people with LD and with the Healthwatch Hertfordshire Mental Health and Learning Disability Group.116 Evaluation of the special care dental service was positive regarding staff training and skills and the flexible appointments that aren’t time limited. They felt that this was a much-needed service. However, they felt that it could be better promoted with better information.

• The Purple Star scheme was developed by Hertfordshire County Council which gives accreditation to health services that are accessible to, and make special provisions or reasonable adjustments for, people with learning disabilities, with staff having undertaken specific training. There is a map available of all purple star services in Hertfordshire.114

4.2.1(xiii) Youth Justice system

• Young people with special educational needs are identified in all ‘Assetplus’ assessments which are undertaken for all young offenders, and referrals to the Youth Justice Education or Health practitioners are made where necessary. Disability and mental health needs are assessed as part of the structured assessment framework. Programmes are individually tailored to take account of learning needs. Dedicated Education and health workers in the teams undertake specialist assessment, support and link to relevant provision where needs are identified.


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• Two services have been set up as part of the Transforming Care Plans (see section 4.2.2(iii)). The Targeted Youth Service supports children and young people who have been involved in the criminal justice system and the Forensic Child and Adolescent Mental Health Service (CAMHS) Pathway has Forensic Adolescent Practitioners who work in Children’s Services to support young people with complex needs.

4.2.1(xiv) YC Hertfordshire and preparation for adulthood

• YC Hertfordshire has a learning difficulties and/or disabilities (LDD) team with specialist personal advisers to provide support and advice for young people with LDD from the age of 13-24. The team works closely with schools, colleges and other education providers and also supports young people who attend out-of-county educational settings and those not in education, employment or training. The LDD team help young people with the transition into adult life, including consideration of options such as further education, training, employment and independent living.117

• YC Hertfordshire personal advisers attend the year 9 (age 13-14) EHCP review and work with young people to create a Preparing for Adulthood Transition Plan from year 9 onwards which can then be reviewed regularly. A Preparing for Adulthood Transition Plan can also be requested by young people that have SEND to help them prepare for their life after school.

• Personal advisers also advise on support at college for young people with complex support needs and can support a request for additional funding for young people with complex support needs.

• YC Hertfordshire has a range of youth projects which young people with a learning disability aged 13-17 can attend. There are also some projects specifically for young people with learning disabilities up to their 25th birthday. The projects are run by youth workers and allow young people socialise and try activities.

• YC Hertfordshire also has a team of supported employment advisers (SEAs) who work with young people aged 16-25. They work with local employers to support young people, arranging work experience placements and supporting training before and during employment. YC Hertfordshire works with Hertfordshire’s colleges and employers to provide supported internships for young people with additional needs, equipping them with the skills and experience needed to achieve sustainable, paid employment.

• The Study Plus programme provides free courses to help 16-24 year olds to get into work or further study and is provided by Hertfordshire Adult and Family Learning Service.

• There are a number of housing options available for young people wanting greater independence as they get older including sheltered housing schemes for younger people, supported housing in the community and supported living services.110


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4.2.1(xv) SEND Young Commissioners

• This project centres on co-production and involving young people with SEND in decisions about local services and approaches. Having undergone a training programme, the Young Commissioners now participate in site visits and attend tender panels and interviews.

4.2.2 Adults 4.2.2(i) Local strategies

• Hertfordshire’s Adult Learning Disability Joint Commissioning Strategy 2019-2024 is being finalised to replace the previous strategy (2014-2019). The draft strategy focusses on three main area outcomes (further details in Box 10):118

o Being healthy o Living locally o Involvement in our local communities

• The previous 2014-2019 strategy was developed with an implementation plan which was reviewed annually. The strategy had the overarching principle of personalisation with the following key areas:

o Choice and control – adapting what we do to suit people, by working with people and their families as partners

o Living in the community as a full citizen – with local support, leading to a meaningful and safe life

o Better health – supporting people to be as healthy as possible o A capable workforce – working in partnership with providers to employ and

develop the right people in their workforce.

Box 10. Hertfordshire’s Adult Learning Disability Joint Commissioning Strategy 2019-2024 action plan 118 1. Being healthy

i) People aged 14yrs+ with LD will be offered good quality LD Annual Health Checks ii) All people with a LD will be on the GP LD register iii) People with a LD will be offered health screening and immunisation in the same way as

the general population iv) People with a LD will have access to appropriate mental health services in the same

way as the general population v) People with a LD will receive the right support in hospital vi) Providers and carers who support people with a LD will know what their role is in

helping people to keep healthy 2. Living locally

i) People will have good information about housing and support options in order that they can plan for the future.

ii) Future accommodation and support options will be developed in response to people’s needs and preferences.


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iii) People will have more choice and control when they are looking for accommodation and support.

iv) We will recruit and develop a workforce with the right skills to support people well. 3. Involvement in our local communities

i) People will have better information about what is happening in their community. ii) People will have a choice of support services that enables them to access community

activities. iii) More people will know how to find work and become a volunteer iv) More people will be able to travel independently or access the right support to get to

where they need to go v) More people will know how to get their voice heard and can seek the right support to

speak up

4.2.2(ii) Learning Disability Partnership board

• The Learning Disability Partnership Board (LDPB) is a co-production board with members including people with learning disabilities, carers, representatives of Adult Care Services, colleges, commissioning, private and community organisations and YC Hertfordshire. The board are responsible for local planning including a five-year work plan, for eight local forums that are involved in local decision-making and ensuring co-production of services, and for information sharing for people with learning disabilities and their families/carers.119

• Family/carers and self-advocates are also given a say in the signing of the Hertfordshire Learning Disability Joint Health and Care Self-Assessment Framework (SAF). The SAF is an annual process to check how well services are meeting the needs of people with learning disabilities, their families and carers. There is a Self-Assessment Framework group who are involved in planning assessments and designing and responding to the annual learning disability surveys.

• The LDPB work plan includes the six working areas: o Lifelong learning o Transport o Feeling and keeping safe o Meaningful life in the community o Health o Communication.

• Each working area has a working group except communication which runs through each group. A steering group meets every 6 weeks to steer the work plan and plan future agendas.

4.2.2(iii) Transforming Care Partnership Implementation Group


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• The Hertfordshire Transforming Care Partnership Implementation Group meets every two months. The group was set up to implement the aims which are set by NHS England nationally, in a way that will work locally alongside other local aims. The group consists of an ‘expert by experience’, operational managers and commissioners in Adult Care services and Children’s services. The Transforming Care Partnership includes Hertfordshire County Council, East and North Herts CCG, Herts Valley CCG and the Specialised Commissioning Hub (NHS England).

• Care and treatment reviews are an important part of Transforming Care. These reviews of care are designed to ensure people are not admitted to Learning Disability or Mental Health hospitals when they do not need to be. They also review those admitted to specialist hospitals to ensure those admissions are short-term and that they can return to the community as soon as possible. All those included in Transforming care (all ages) have regular care and treatment reviews.

• The Hertfordshire Transforming Care Partnership plan was published in 2015 to support delivery of outcomes including that more people are supported to live in the community / at home, fewer will develop behaviours that challenge and those who do will be kept safe in their communities, fewer people will be admitted to secure hospitals and any hospital stays will be as short as possible and as close to the individual’s home and support networks as possible.120 In May 2017 NHS England asked all Transforming Care Partnerships to review their plans and progress. Since 2012, the number of learning disability/ rehabilitation inpatient beds has been reduced from 46 to 10. Funds have been redirected to community services including:

o Specialist Learning Disability Community Assessment and Treatment Service (CAT). o Multi-disciplinary Transforming Care Team o Offending Behaviour Intervention Service (a community-based service for high-risk

adults with learning disabilities who are likely to have contact with police/ criminal justice, run by Hertfordshire Partnership University NHS Foundation Trust (HPFT)).

o Positive Partnerships Team (support people who are living in the community to solve problems as they arise and support carers to develop skills in Positive Behaviour Support, run by HPFT).

4.2.2(iv) Connected Lives Assessment

• In Hertfordshire, individuals can be referred to adult care services by members of the public or by professionals. A Connected Lives assessment is then undertaken to establish eligibility, level of need and appropriate services. Individuals may also come into Adult Care Services when they transition from Children’s Services, via the transition team or 0-25 services.

• The Connected Lives Framework is a holistic process for assessing need which was established in Hertfordshire in 2018, it is a three-stage process that is designed to reduce the numbers of people needing long-term formal support with a greater focus on enablement, independence and prevention.121

4.2.2(v) Day Opportunities and Preventative Service


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• This service provides for adults aged 18 and over (and occasionally younger people transitioning to adult services) who are deemed eligible for support following a needs assessment. The service is delivered in a range of settings including day centres, lunch clubs, activities, support groups and preventative services across Hertfordshire.

• The aim of this day service is to provide opportunities for service users to socialise, take part in activities, live more connected lives and feel a part of their community, but also as a preventative service to prevent needs from escalating.

4.2.2(vi) Residential services

• This service provides for adults aged 18 and over (and occasionally younger people transitioning to adult services) who are deemed eligible for support following a needs assessment. The service settings include residential care homes and nursing homes. Some services will specialise, such as in learning disabilities or challenging behaviour.

• Residential placements provide care within a safe setting, often care is provided at all times. Many homes have on-site activities for residents which give the opportunity to socialise. Residential homes frequently provide personal care, and therefore must be Care Quality Commission (CQC) registered.

4.2.2(vii) Supported Living services

• This service provides for adults aged 18 and over (and occasionally younger people transitioning to adult services) who are deemed eligible for support following a needs assessment. The Community support service is provided in a range of settings including the community, individual’s homes and shared property/ shared occupancy schemes.

• The key objective of supported living is to promote independent life skills for adults with learning disabilities and mental health needs. This can include help to manage a tenancy, shopping, developing independent travel skills and to maintain social activities. Support is provided in a combination of 1:1 support hours, shared hours, additional hours, and sleep-in support. The support may be provided within a scheme or within single or multiple occupancy properties within the community.

4.2.2(viii) Shared Lives

• Shared Lives is a scheme which places adults (not just those with learning disabilities) to live with families that will give them the support they need in their lives. The scheme is regulated by the Care Quality Commission. There is an independent panel which approves Shared Lives carers, carers are given training and regular reviews and there is a matching process for matching individuals to carers.

• Placements can include short-term placements to prepare for independent living (2 years), long-term placements (>2 years), short break services (including respite for current carers)


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and emergency crisis placements. As of August 2018, there were 36 long term placements and 9 short stay arrangements in total.122

4.2.2(ix) Drug and Alcohol disorders

• In Hertfordshire, specific guidance is in place for all services working with people with a learning disability and a substance misuse disorder. All mental health and substance misuse services in Hertfordshire are available to people with a learning disability. There is a strong emphasis on integrated care between Hertfordshire Partnership University NHS Foundation Trust (HPFT) services, local authority teams and other agencies.

• This guidance provides recommendations on making referrals between substance misuse and HPFT and HCC services, and identifies the need for a named primary contact for each individual within each service. Joint working between services is important for assessment, care planning and working with individuals, carers and families to ensure a person-centred approach. Joint appointments, communication and consultation are all important aspects.

• Hertfordshire’s Drug and Alcohol services have a carers’ programme to provide support, advice and information. Identified carers are provided with relevant information and invited to attend carers’ groups.

4.2.2(x) Community Learning Disability Services

• The service is provided by Hertfordshire County Council and consists of: o Seven Community Learning Disability teams and a Transforming Care team o Two Transition teams o A Health Liaison Team o An Asperger’s Social Care Team.

• Community Learning Disability Teams work with adults aged 18 and over and the teams include social works, Community Learning Disability Nurses and other social care staff. They offer support and advice on health, benefits, education, social issues etc. They also support and advise family carers. Each individual has a named nurse, a nursing assessment and a care plan, which is regularly reviewed. A purple folder of health information and other information is created for each individual.

• The Transition teams work with Children’s services to support young people aged 16 and over with the transition into adulthood and adult services.

• The Health Liaison team work with primary and secondary care health settings to ensure people with learning disabilities receive the same health services as the general population. This team includes Acute Liaison nurses who can support people with learning disabilities admitted to hospital, including helping with communication and reasonable adjustments. The Health Liaison team also includes Specialist Epilepsy Nurses.


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4.2.2(xi) NHS services

• The Purple Star scheme was developed by Hertfordshire County council which gives accreditation to health services that are accessible to, and make special provisions or reasonable adjustments for, people with learning disabilities, with staff having undertaken specific training. There is a map available of all purple star services in Hertfordshire.114

• Hertfordshire has two specialist Learning Disability Community Assessment and Treatment (CAT) teams (which incorporates an Intensive Support Team). The team provides needs assessment, positive behaviour support and supports people. The team works with adults with a learning disability who may have additional mental health needs, behaviours that are said to challenge services and/or complex needs. The teams work in partnership with Adult Care Services, Community Learning Disability teams, carers, primary care, mental health services and the voluntary sector.

• Dove Ward (Kingfisher Court) is the inpatient ward for people with a learning disability and a mental health condition who need specialist inpatient input. The ward is staffed by a multi-disciplinary team. When admission is necessary, the average length of stay is 12 weeks.123

• The Eric Shepherd Secure Services provides a full secure treatment pathway for people with a Learning Disability, including specialist psychological, psychiatric and behavioural therapies and complex specialist rehabilitation. This service includes Warren Court (a medium secure inpatient unit with 30 beds for men who are considered a risk of doing serious harm to others) and 4 Bowlers’ Green (a low secure unit with 9 beds for men who are considered a significant risk of doing harm to others).124 Other forensic services for people with a learning disability specifically include the Offending Behaviours Intervention Service (a community-based multi-professional forensic team for people with learning disability and/or autism).

4.2.2(xii) Healthwatch Hertfordshire Learning Disability Service Watch Group

• This group is chaired and run by Healthwatch Hertfordshire. The group includes service users and representatives from organisations and gives them an opportunity to feedback their experience of services and to highlight concerns and good practice. They also undertake quality visits and train people with LD to undertake them. Information, talks and discussion on various topics is also provided for the group at their request.116

4.2.2(xiii) Voluntary sector

• Herts People First is a self-advocacy and support service run by and for adults with a learning disability. There are self-advocacy groups in Stevenage and Letchworth (with Support Workers) meeting monthly and an advocacy worker who visits residential homes for people with learning disabilities in Letchworth, Stevenage and Royston. The organisation also holds training courses, attends Adult Care Services and Health Service consultation meetings and organise days out and activities.


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4.2.2(xiv) Hertfordshire Learning Disability Mortality Review (LeDeR) programme

• In Hertfordshire, the LeDeR programme reviews the deaths of people with learning disabilities as per the national programme and publishes reports with recommendations for services. The Hertfordshire LeDeR programme has an action plan, with key priorities including:

o Improving understanding of the Mental Capacity Act o Reducing the number of people who die because of respiratory illness o Helping people to get a purple folder, an annual health check, a flu vaccination and

support when in hospital o Better communication and coordination of care o Further staff training o Sharing of health action plans o Better record-keeping o Named health coordinators for people with LD o Clear identification and recording of reasonable adjustments.125

4.2.3 Stakeholder consultation

• A workshop was held to gather information about local services and approaches as well as what’s working well locally and key areas for improvement. A range of Hertfordshire County Council stakeholders participated from Adult Care Services and Children’s Services, from Commissioning and Heads of Services. The information received is summarised in Box 11. Discussion of recommendations at this workshop has also informed the recommendations presented in this JSNA, alongside analysis of the literature and local data.

Box 11. Stakeholder consultation with Adult Care Services and Children’s Services Children and young people

• Consultation with stakeholders highlighted some services and approaches that are working well locally for children and young people with LD. This includes the focus on preparation for adulthood in services and also in young people’s EHCPs, the short breaks local offer (despite pressures on capacity and the offer being under review) and the greater use of community resources and focus on community integration and independence. It was also felt that special schools are in general performing well and are well liked by parents, although could benefit from greater links to mainstream schools.

• Consultation revealed that there are some key issues and gaps in service provision in Hertfordshire. For children and young people, recruitment and retention of carers for homecare particularly but also for short breaks, direct payment carers and buddy schemes is an important challenge. There is also a need to continue to encourage increased use and availability of community resources, particularly in the face of tight thresholds for referral, long waiting lists and capacity issues of some commissioned specialist services. It was identified that gaps are emerging in some parts of East Herts for community-based activities which are inclusive.


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• Some available resources, such as Kids Hubs are underused and there are issues with geographic access that may preclude some people from using the services. Other services, such as short breaks, are struggling to meet the needs of children and young people with challenging behaviour in the face of increasing numbers. Accommodation and challenging behaviour are both important issues in Hertfordshire for children and young people, particularly around young people having good options when transitioning to adulthood and around the numbers of young people with challenging behaviour going to residential schools. It is important that all children and young people with more complex needs have good options for homes.

• It was felt that Hertfordshire could benefit from a direct payment support service that includes personal assistants/a portal for recruitment of direct payment carers. It was also felt to be important to work towards bringing children from Hertfordshire who are in residential out-of-county placements back into Hertfordshire settings.

Adults

• For adults, there were some areas identified that were working well locally including a better and more clear approach to transport arrangement for people with LD, a growth in the use of shared in the community, a greater use of assistive technology and a focus on partnership working, with the Community Assessment and Treatment Team a good example of this (see section 4.2.2 (xi)). The move towards the Connected Lives approach to assessment and emphasis on enablement and community integration was also highlighted (see section 4.2.2 (iv)).

• However, there were some key issues or gaps identified for adults with LD in Hertfordshire. There is a need for greater provision to meet the needs of those with complex needs, both in Supported Living and Day Services. Accommodation options and capacity are also a significant issue for adults with learning disabilities in Hertfordshire. Hertfordshire County Council’s property company, Herts Living, will help to deliver some of the supported accommodation capacity needed.

• Other gaps in provision identified were in day services, and homecare was felt to be used less in adults than in children and young people potentially highlighting an issue with transition of these services. Provision of these services is something that Adult Care Services are working to increase. Recruitment of carers and appropriately skilled staff was also identified as an important issue, particularly in certain areas of the county including St Albans, Dacorum and rural East Herts in particular. This is in the face of growing demand for carers and for services and increasing pressures for services to be flexible and financially viable. Adults with LD were also felt to be increasingly likely to have higher and more complex health needs, with higher levels of multimorbidity.

• An important gap identified was the availability and accessibility of information about services and resources for people with LD. This has previously been raised in consultation for the Adult Learning Disability Joint Commissioning Strategy 2019-2024, with a need identified for a simplified process of accessing up to date information.


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5.0 Analysis

5.1 What the evidence tells us

• People with a learning disability have a wide range of needs and it is estimated that a large proportion of people in Hertfordshire are unknown to services. It is therefore likely that local data does not capture all people with learning disabilities in Hertfordshire and may therefore not be fully representative. Furthermore, a proportion of those known to adult services are likely not to have been diagnosed during childhood whereas some children may not transition to adult services.

• Learning disabilities can be related to a wide range of underlying causes and risk factors and can therefore present variably and with variable severity. Evidence from the literature suggests that learning disabilities are more common in men and in those of lower socioeconomic status. Evidence regarding ethnicity and learning disability is inconsistent.

• In Hertfordshire, there is a lower proportion of children known to schools with Moderate Learning difficulties (MLD), Severe Learning Difficulties (SLD) or Profound and Multiple Learning Difficulties (PMLD) than the national average. More males are known to schools than females and the majority of children have MLD as their primary or secondary need. Numbers have increased over the last few years. Nationally, evidence shows that children with SEN and a learning disability have lower educational attainment and higher rates of school absences than other children.

• In March 2019, there were 2,516 children with an EHCP with a primary or secondary need of moderate, severe or profound and multiple learning difficulties known to Children’s services in Hertfordshire. The majority of these children had a primary or secondary need of MLD (79.5%). This number has increased over the past three years.

• There are a small number of children with MLD, SLD or PMLD in out of county placements. The greatest number are in the 12-16 year old age group, a greater proportion are male and nearly 1 in 5 are looked after children.

• Previous evidence has shown that nationally children and young people with learning disabilities are more likely to be looked after children and to experience adverse social circumstances including poverty, poor housing, bullying, abuse or neglect. Adults with learning disabilities are also more likely to experience social determinants of poor health such as inadequate housing, unemployment, living in areas of socioeconomic deprivation, financial hardship, violence, discrimination and social isolation.

• The total adult learning disability population in Hertfordshire is projected to increase over the next 15 years, with particularly notable increases in the learning disability population aged 65 and older. Older people with learning disabilities have similar needs to all older people but also may have specific health, care and housing needs related to their learning disability. Management of the needs of this group is likely to be complex and may place a substantial pressure on services.


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• In Hertfordshire, there was a higher proportion of people with a learning disability living in unsettled accommodation or unsatisfactory accommodation than nationally, though the majority are living in stable and appropriate accommodation and this was not significantly different from the national average.

• There is also a low proportion of people with learning disability in paid employment though this has increased slightly over recent years. There is evidence available in support of the effectiveness and cost-effectiveness of supported employment programmes for people with a learning disability.127,128

• In Hertfordshire, there was a higher number of section 42 safeguarding enquiries in people with learning disabilities than nationally. Section 42 of the Care Act 2014 requires that local authorities must make or ensure enquiries are made if there is a belief that an adult may be experiencing or be at risk of abuse or neglect.

• There has been a growth in the numbers accessing supported living in the community. Though numbers accessing other long-term support services including homecare, day opportunities and short stay have either remained stable or slightly fallen.

• The prevalence of people with learning disabilities who are known to GPs and on the practice register is significantly lower than the national average. It is also significantly lower than the estimated total prevalence of people with learning disabilities, suggesting that as many as 3 in 4 people with a learning disability may not be known to their GP. There was an even lower prevalence on the learning disability register for children and young people than for adults.

• In general, people with learning disabilities experience poorer health than the general population. These inequalities in health largely relate to barriers to accessing effective health care and often start early in life. People with learning disabilities often receive lower levels of healthcare and healthcare received is more likely to be of a worse quality. Other factors include increased exposure to determinants of poor health such as inadequate housing, unemployment, social isolation, physical inactivity and poor lifestyle habits.

• There are higher rates of certain long-term physical health conditions in people with learning disabilities; this is particularly striking in regard to epilepsy, diabetes, hypothyroidism and asthma, but is also the case with heart failure. These are all conditions with the potential to have a large impact on quality of life, morbidity and mortality. People with learning disabilities are known to have a lower life expectancy than the general population and to be at greater risk of premature death at a national level.

• People with learning disabilities in Hertfordshire are also affected by certain conditions that are associated with having a learning disability, including chronic constipation, dysphagia and gastro-oesophageal reflux disease. In particular, ENHCCG had a high prevalence of chronic constipation and GORD compared to England as a whole and both CCGs had a higher prevalence of dysphagia, which had increased from the previous year.


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These conditions can all affect quality of life and lead to more serious medical complications including recurrent chest infections. These conditions may be underdiagnosed and under-recorded in people with learning disabilities in primary care, given that others have reported higher prevalence rates.22

• Physical health in this group is also likely to be impacted by weight status; people with learning disabilities are more likely to be obese, particularly women. Males on the learning disability register in both CCGs are more likely to be a healthy weight than the general population, whereas the situation is the reverse for females. In Herts Valley CCG only, people with learning disabilities are also more likely to be underweight. This group may therefore benefit from a concerted effort to promote healthy lifestyle behaviours.

• There are also higher rates of mental health problems experienced by adults with learning disabilities in Hertfordshire, including severe mental health problems, depression and dementia (particularly at earlier ages). The true prevalence may be even greater due to issues with communication and carer recognition and attribution of symptoms to their learning disability leaving mental health conditions undetected.

• There are statistically significantly lower rates of breast and cervical cancer screening, most strikingly cervical cancer screening, in people with learning disabilities in Hertfordshire, without any substantial improvement over the past four years. The uptake of colorectal cancer screening is much higher and not statistically significantly different from the general population. There may be a number of contributory factors including communication difficulties, lack of patient and/or carer understanding of the importance, not using easy-read invitations and lack of staff training for screening providers.

• All people with a learning disability should be offered an annual flu vaccination. Though coverage has improved slightly over the last few years, still only half of patients with a learning disability received a flu vaccination in 2017/18. Flu is associated with morbidity and excess seasonal mortality in vulnerable groups.

• Annual health checks should be offered to all patients with learning disabilities aged 14 and over. These health checks provide an opportunity for health promotion, early intervention, and promotion of screening and detection of previously undiagnosed physical and mental health problems. Coverage has improved in Hertfordshire: the percentage receiving a health check has increased in both CCGs over the past four years but there are still a proportion not receiving their annual health checks.

• There is a wealth of guidance available for services working with people with learning disabilities. Some apply to all ages, and some are specific to adults or children and young people. Approaches to improving the health and wellbeing of people with learning disabilities should seek to consider the varying needs across the life course, but also how to ensure a smooth transition from childhood to adulthood. The period of transition from childhood to adulthood is an area in which there are potential service gaps and in which some people may drop out of services.


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5.2 Limitations of this needs assessment

• This needs assessment provides a broad overview of the issues pertaining to people with learning disabilities in Hertfordshire; however, due to the complexity and breadth of the topic it has not been possible to explore some aspects in detail in this report for practical

reasons, or to include all available related statistics.

• There are also some specific gaps in the local data available for this JSNA which may limit

inferences about the health and care of people with learning disabilities. In particular, local data on acute secondary care, data on young people accessing supported/independent living, training and employment, voluntary sector data and service performance data is not included.

• The NHS Digital data used in this report has several limitations. Firstly, it only provides information about those who are known to GP surgeries and on the register. This may not be representative of the entire population with learning disabilities. Secondly the coverage of practices in the county is very variable. Data were not extracted from all GP practices and coverage varies greatly between CCGs. In 2017/18, 6% of practices in NHS East and North Hertfordshire CCG were included and 70% in NHS Herts Valleys CCG. Therefore, data for East and North Hertfordshire CCG in particular may not be representative of the learning disability population. Numbers of people can be very small for some of the subgroups or topics discussed, reducing the potential to draw firm conclusions.

• The variation in coverage also means that the composition of the cohort included will have changed from one year to the next which can make trend interpretation difficult. Other limitations arise from the fact that the definition of learning disability encompasses a broad range of disabilities, can be difficult to diagnose and may not be well recorded formally on GP practice IT systems.

• Information recorded on GP practice systems may not necessarily reflect the situation due to variations in recording. This data also cannot ascertain whether specified actions have not been taken because of patient refusal, because it is deemed not to be in their best interests, or because it has been done elsewhere e.g. in specialist care. The potential for under or over-diagnosis of certain conditions may cause apparent variations in prevalence. Other apparent differences may arise from more frequent measurement due to health checks in this group. Interpretation of the data listed for children in this group is complex because of the low identification rate in children.126 There is also a limitation in understanding the quality of annual health checks delivered as there may be variability by practice in terms of what is delivered and by whom.

• Employment data presented for this group is prone to limitations related to recording. Employment rates for people with learning disabilities as a whole are likely to be underestimated as those with milder learning disabilities not known to services are more likely to be in employment.

• As discussed previously, recording of learning disability diagnosis in SEND data is not clear. This JSNA has taken the approach of including all children with a primary or, where


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available, secondary need of moderate, severe or profound and multiple learning difficulties. This may miss some children with learning disabilities who have other primary needs or secondary needs recorded.

• The prevalence of people known to services underestimates the true prevalence of people with learning disabilities in Hertfordshire. There is no complete register of all people with learning disabilities in the county. There is also a mismatch between the number of people with learning disabilities known to schools or children’s services, and the numbers known to adult health and care services. The total number with learning disabilities is therefore not known and this may reflect differences in severity to a certain extent, with those with milder learning disabilities less likely to be known to services. Learning disability is in general, not recorded on death certificates which also limits evaluation of mortality in this group.

• The prevalence may vary in specific subgroups, such as homeless people or those living in prison, the literature on these subgroups is lacking. Published literature pertaining to the specific health needs of particular groups with learning disabilities, such as older people, is relatively scarce.

• The literature on this topic is complicated by the fact that people with learning disabilities are not a homogenous group, with variation in severity and causative conditions. There is also some difficulty in ascertaining the true burden of physical and mental health needs in this group, given the underdiagnosis of conditions due to lack of recognition, the attribution of symptoms to their learning disabilities and the low rates of screening and access to health care. The evidence base remains fairly limited for people with learning disabilities in general.

• This JSNA therefore provides a broad overview of the issues for people with learning

disabilities in Hertfordshire. However, it is important to bear in mind that evidence on the needs of people with learning disabilities in Hertfordshire (particularly those with milder learning disabilities and those who are not receiving care services) has limitations.


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6.0 Recommendations

• Consider methods for increasing the detection of people with learning disabilities, including increasing the numbers on the GP learning disability register, with the aim that all are recognised and have the appropriate healthcare and reasonable adjustments.

• Consider methods to increase early diagnosis/recording and facilitate information sharing between agencies, for instance ensuring that a clinical diagnosis in childhood leads to enrolment on the GP register. Work to update the diagnostic codes which are included on the register would also be valuable.

• Develop a feasible and sustainable plan to collect local data on the health, social care and service use of people with learning disabilities to guide commissioning and health promotion activity. Explore ways to encourage dissemination of best practice and of data and evidence across Hertfordshire. Building up local networks that include public health, social care, health services, academia and the voluntary sector may help with this.

• Explore ways to capture and monitor outcomes and quality within services for learning disabilities and disseminate this information. Continue with work to develop an outcome framework for providers with a summary score/measure for benchmarking. Focus on working with providers to make services more efficient and cost-effective. Alongside this, explore options for schemes to recognise services as ‘learning disability friendly’, such as extension of the purple star scheme currently used by health services.

• Options should be explored for a strategy to improve recruitment and retainment of the care workforce. This may include consideration of recruitment campaigns, training and incentives.

• Consider ways to continue to support the use of community resources and community capacity building.

• For both adults and children, a key challenge is providing care that meets the needs of the individual for the growing number of people with complex needs and challenging behaviour. There is a need for more providers willing and able to meet their needs, supported by training and recruitment of staff. Consideration should be given to the best methods to address this challenge.

• Review the accessibility of universal services to people with learning disabilities, such as sexual health and screening. All mainstream services should consider this as a key requirement. Consider ways to ensure people with learning disabilities are considered in the commissioning of all services, not just specialist services.

• Consider ways to continue to promote flu vaccination and cancer screening as well as reasonable adjustments within these services and all other services. Consideration should be given to how to ensure all mainstream services have access to Public Health England guidance and resources, such as easy-read information guides and invitations. Consider how to embed work done in these areas and how to share it with the public and other


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services. Ensure people with learning disabilities are aware of their rights and services of their duties around reasonable adjustments.

• Continue work to promote and increase the uptake of the annual health checks for people with learning disabilities, including promoting awareness of the eligibility and importance to people with learning disabilities, carers and health and social care staff. Consider ways to evaluate and monitor the quality of annual health checks.

• Evaluate ways to ensure education, health and care plans take opportunities to explicitly consider health actions for individual children and young people and improve the focus on health, including plans for medication review, screening, vaccinations and annual health checks.

• Consider the availability and further development of healthy weight interventions for this group, and how to recruit into them. Potentially GP practices could be encouraged to invite patients identified as obese through the annual health checks as well as through opportunistic invitation. Ensure all health and social care staff know where to signpost to. Alongside this, consider ways to promote physical activity and other health promotion initiatives to this group.

• Explore ways to improve the accessibility of health information, information about services and information about work going on locally for people with learning disabilities and their families/carers. Review the accessibility of advice on education, employment, benefit payments and housing. Consider the availability of information on informal sources of support and support for those not eligible for social care.

• Consider methods to ensure a smooth transition from childhood to adulthood including how to promote information sharing and transition between services.

• Consider methods to facilitate joint working between Children’s Services and Adult Care Services to meet the other recommendations of this JSNA and in future work. Consideration could be given to the development of an all-age Hertfordshire learning disability strategy, aligning the work of multiple relevant partners around a common set of objectives.

• Consider ways to improve access to and quality of health and social care services, improve lifestyle factors and improve the wider determinants of health such as housing and employment, education and training opportunities. Integrated multi-departmental working, for instance between health, social care, education and housing, may provide good opportunities to impact the wider determinants of health for this group. For example, collaboration on supported employment initiatives with links between Education, Employment and Health and work with Hertfordshire Local Enterprise Partnership.

• Assess options to ensure that all people with learning disabilities have appropriate, settled and supportive living environments. This could involve further promotion of supported living for adults in the community and in particular a focus on younger adults. For


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instance, consideration of how to maximise the use of the shared lives scheme, more shared ownership of properties and the promotion of more flexible community support for adults who live in their own homes.

• Review whether current providers of supported living accommodation have specific health improvement plans in place and if so how they are monitored. Consider methods to ensure plans are in place and explore opportunities for training on healthy lifestyle and health promotion.

• In light of the expected increasing numbers of older adults with learning disabilities, explore how advanced care planning can be strengthened in health and social care services. An important aspect of this will be prioritisation of advanced planning for people with learning disabilities living at home with an older carer and forecasting of service use.

• Review the training regarding learning disabilities that has been provided locally to key groups and services including primary care, the social care workforce, screening and immunisations services, parents and carers. Where there are opportunities, consider training to raise awareness of the health care problems experienced by people with learning disabilities including complex needs, challenging behaviour, communication issues, capacity, health promotion and accessing healthcare services. This includes the entire health and care workforce, not just specialist commissioned services.

• Review previous awareness-raising campaigns or activities that have been undertaken locally with the public and with professional groups. Consider whether there are opportunities for campaigns to improve awareness and reduce discrimination. Awareness-raising of what work is going on and what is on offer locally for people with learning disabilities is also an important aspect.


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2015 Jun;18(6):36–9. 145. Keywood K. Supported to be Sexual? Developing Sexual Rights for People with Learning Disabilities.

Tizard Learn Disabil Rev. 2003 Jul;8(3):30–6. 146. Ministry of Defence. MOD to review Armed Forces exemption from UN Convention on the Rights of

Persons with Disabilities. 2018.


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Appendix A: Information for Equality Impact Assessments

●●● Hertfordshire JSNA

Information for Equality Impact Assessments


May 2019

Part A: Protected characteristics Age

• Learning disabilities affect all age groups, with particular considerations and health and wellbeing impacts across the life course.

• The percentage of pupils requiring SEN support increased up to a peak at age 10 (14.6%) and then declines as age increases. The percentage of pupils with a statement or EHC plan continues to increase up to age 15 (3.8%).14

• The greatest number of children receiving SEN support for a moderate learning difficulty was at age 10 and it was also the commonest SEN overall at this age (30.1%). The greatest number of children with a statement/ EHCP plan for moderate learning difficulty was at age 15. 14

• The greatest number of children receiving SEN support for a severe learning difficulty was at age 7. It was commonest amongst all SEN support at age 2 and under. The greatest number of children with a statement/ EHCP plan for severe learning difficulty was at ages 9 and 12. It was commonest amongst all children with a statement/EHCP at age 18.14

• The greatest number of children receiving SEN support for a profound and multiple learning difficulty was at age 3. It was commonest amongst all SEN support at age 2 and under. The greatest number of children with a statement/ EHCP plan for severe learning difficulty was at ages 6 and 7. It was commonest amongst all children with a statement/EHCP at age 2 and under.14

• Life expectancy has improved over recent years but remains substantially lower than the general population.30,67 In particular, over the last few decades, life expectancy has increased on a par with that of the general population, with notable exceptions including people with Down’s syndrome, epilepsy or multiple disabilities.67–69

• People with learning disabilities therefore account for an even smaller proportion of the population in older age groups. Primary care data shows a highest prevalence in young adults aged 18-24, and prevalence declines over the age of 60.21 This situation may well change. Older adults are proportionally the fastest growing group of people with learning disabilities and there is a forecasted increase of 164% in the number of people with learning disabilities aged over 80 and requiring social care by 2030.70,71


125

Disability

• In addition to their learning disability, people with a learning disability are also more likely to have a sensory impairment than the general population.2

• People with a learning disability are more likely to have poorer physical health than the general population. Those with certain underlying diagnoses, including cerebral palsy, may also have a physical disability of varying severity.

Gender reassignment

• The literature on gender reassignment and transgender in people with learning disabilities is sparse. One study based on a small number of participants reported that people with learning disabilities experience a wide range of gender identity issues similar to those seen in the non‐learning disabled population and that those experiencing gender identity issues had high levels of mental health problems and reported childhood abuse.129

• See also Sexual orientation

Marriage and civil partnership

• In the past people with a learning disability have been significantly less likely to marry than the general population. One study in Leicestershire found that the proportion of people on the learning disability register who had ever married was 4.6%, which is low compared to the general population, and the rate was non-significantly higher in people of Asian ethnicity than White ethnicity.130

• For people with a learning disability, and other vulnerable adults, there may be issues around capacity to consent to marriage and vulnerability to forced or coerced marriages. However, the evidence on prevalence is limited and it is difficult to obtain accurate data.130

Pregnancy and maternity

• Over recent decades there has been an increase in the numbers of women with learning disabilities becoming pregnant.131 These women are also more likely to experience factors which adversely impact health and wellbeing during pregnancy and poorer pregnancy outcomes. In particular, there is an increased risk of pre-eclampsia and deliveries are at higher risk of being preterm, low birthweight or having low Apgar scores (assessment of newborn health) with an increased likelihood of the baby being admitted to the neonatal intensive care unit 131–133. Factors identified as potentially important in these outcomes include higher levels of social isolation, socioeconomic deprivation and lower use of antenatal services.132,134

• A systematic review found that women with a learning disability had trouble understanding antenatal information communicated during pregnancy, often in a text-based form. They also found that midwives reported that they lacked knowledge in this area and wanted guidance on how to meet the communication needs of this group.130


126

Race

• In January 2018, special educational needs were most frequent in travellers of Irish heritage (30.9%) and Roma children (26.8%). Statements or education, health and care plans (EHCPs) were most common in travellers of Irish heritage (4.5%) and in Black Caribbean children (4.2%), higher than the national average of 2.9%.14

• Moderate learning difficulty was the most common primary type of need in January 2018 for pupils on SEN support for White (23.8%) ethnic groups whereas the most common primary type of need for Mixed (23.3%), Asian (34.0%), Black (31.8%) and Chinese (45.1%) ethnic groups was speech, language and communication needs14. If moderate, severe and profound and multiple learning difficulties are grouped together then this represents the most common need group for White ethnic groups, but speech, language and communication needs remains the most common for other ethnicities.14

• If moderate, severe and profound and multiple learning difficulties are grouped together then this represents the most common need group for children with a statement/EHCP for White ethnic groups and Asian ethnicities, but Autism Spectrum Disorder is the most common for other Mixed, Black and Chinese ethnicities.14

• Previous work has also found an increased rate of less severe learning disabilities amongst travellers or Irish and Roma heritage and an increased rate of severe learning disabilities amongst children of Pakistani and Bangladeshi heritage. Minority ethnicity status was, however, associated with lower rates of learning disabilities overall.64

• Some studies have shown a higher prevalence of learning disabilities in people of South Asian ethnicity in the UK, in particular of severe learning disabilities.73,74 Whereas another study found the prevalence to be similar to people of White ethnicity.75 However, evidence about variation in the prevalence of learning disabilities by ethnicity in adults has been inconsistent and there is very little evidence available for some ethnicities.72

Religion or belief

• No specific issues identified through this needs assessment. Sex

• Boys are more likely to have special educational needs (SEN) than girls. In January 2018, 14.7% of boys were receiving SEN support compared with 8.2% of girls. A statement or EHC plan was in place for 4.0% of boys and 1.6% of girls. These figures have remained fairly stable.14

• There were more boys receiving SEN support or with a statement/EHCP for moderate, severe and profound and multiple learning difficulties (343,126) than girls (115,954) in state-funded primary, secondary and special schools in January 2018. So, 75% of children with SEN support or a statement/EHCP for these needs were boys14. However, moderate learning difficulty was more common in girls (27.5%) than boys (22.2%). 14

• A 2011 study reported that there were a greater total number of adult men with learning disabilities in the UK than adult women.6


127

• In 2017/18, data from NHS Digital found that there was a greater number of men on GP learning disability registers, with 61.5% of the total being male.66

Sexual orientation

• There is an increasing but still limited evidence base regarding sexuality and sexual health in people with learning disabilities. A systematic review focussed on issues affecting people with learning disabilities who identify as lesbian, gay, bisexual and transgender (LGBT).41 Key issues identified for this group included access to services, access to support and counselling and access to education and social support networks.

• People with learning disabilities who identify as LGBT are at increased risk of stigma for their LGBT status and their learning disability, discrimination, marginalisation, social exclusion and limited opportunities to develop relationships.41–43 In particular, they are at risk of dual-marginalisation as a result of their disability and their sexual orientation.135

• There is little up-to-date evidence on how many people with a learning disability are in a relationship. One study from 2005 found that only 3% of people with a learning disability were living with a partner, compared with 70% of the general population.136

• Sex education and support from services is often insufficient or ad-hoc.137–139 There can also be a lack of accessible information and as a result knowledge and understanding about sexual health can be relatively limited in people with a learning disability.140,141 This can lead to unsafe sexual behaviour and a lack of awareness about reporting sexual abuse. This is important given that a relatively high number of people with a learning disability experience some form of sexual abuse, particularly women.142,143

• Improving teaching about sex and relationships for people with a learning disability can help them to have healthy sexual relationships, increase understanding of consent and empower them to five or deny informed consent and help them to understand and report experiences of sexual abuse.144,145

Part B: Other categories

Military personnel and armed forces veterans

• The Ministry of Defence is currently exempt from the UN Convention on the Rights of Persons with Disabilities, meaning that it is not required by law to recruit or retain personnel with a condition that may be disabling under UK law. This is subject to five-yearly review.146

Carers

• There are important considerations for both those providing care to someone with a learning disability and for those with a learning disability caring for someone else.

• Over half of family carers who care for an adult with a learning disability spend more than 100

hours a week caring for that person. 74.3% had been carers for over 20 years and 30.2% are not in


128

paid employment due to their caring commitments.5 Seven out of ten families caring for someone

with profound and multiple learning disabilities report having reached or come close to breaking

point because of a lack of short break services.2

• Two thirds of adults with learning disabilities live with their families, usually their parents. Older people with learning disabilities may be living with family carers who themselves are becoming older and in need of support or no longer able to cope with caring duties.39

• Many services and groups within Hertfordshire include carers and involve them in feedback, planning and decision making. This includes Delivering Special Provision Locally (DSPL) Area Groups that include parents and carers and the Learning Disability Partnership Board.

• The SEND Information Advice and Support Service, short break and family centre services offer support and advice for parents and carers of children with learning disabilities.

• The importance of meeting the needs of those caring for someone with a learning disability and in people with a learning disability who are carers is highlighted in NICE guidance and in this JSNA.


129

Appendix B: Tartan rug

#N/A

Low High

Sex Age Unit Period

Persons School age per 1000 2018 28.9 19.7 35.1 37.3 25.9 35.4 24.1 22.0 25.3 14.8 38.9 17.4





Persons 18+ yrs per 1000 2015/16 3.3 3.6 3.1 3.4 3.1 2.8 3.3 3.9 3.3 3.3 3.0 2.5

Persons All ages % 2017/18 0.49 0.45 0.37 0.43 0.50 0.42 0.48 0.43 0.41 0.46 0.40 -

Persons 18-64 yrs per 1000 2016/17 48.9 56.9 54.8 51.0 42.9 61.2 53.5 38.9 51.2 40.8 50.6 47.0

Persons All ages per 1000 2016/17 48.9 56.9 54.8 51.0 42.9 61.2 53.5 38.9 51.2 40.8 50.6 47.0

Persons 18-64 yrs % 2015/16 75.2 73.1 80.1 76.9 56.7 65.9 66.0 62.1 69.9 71.8 71.2 65.9

Persons 18-64 yrs % 2015/16 19.8 26.7 19.6 23.1 5.3 30.6 17.8 32.8 19.0 20.1 19.5 32.4

Persons 18-64 yrs % 2015/16 5.0 0.00 0.00 0.00 38.2 3.6 16.3 5.1 10.8 8.1 9.3 2.2

Persons 18-64 yrs % 2015/16 0.14 0.34 0.00 0.00 0.00 0.00 0.00 0.15 0.00 0.14 0.00 0.00

Persons 18-64 yrs % 2015/16 5.8 4.7 7.6 9.4 2.1 3.6 3.3 8.2 2.6 3.8 11.9 5.5

Persons 18+ yrs % 2015/16 28.6 19.3 30.0 32.3 22.2 25.6 53.4 26.5 28.8 35.2 26.3 30.5

Persons 18+ yrs per 1000 2016/17 54.3 91.8 64.2 42.1 53.3 79.4 61.5 33.2 69.1 63.6 11.4 28.3

Persons 18+ yrs per 100 2015/16 54.5 60.7 64.5 60.6 52.0 57.3 52.8 68.7 61.5 58.5 62.2 50.2

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Hertfordshire Learning Disabilities JSNA · learning difficulties such as dyslexia and dyspraxia.2...

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