Mental Health Services Insight Review Accessing mental health services in Leeds

November 2020 V1 This paper will pull together existing insight and data from various sources in order to:

• Describe the population who live in Leeds

• Outline the needs and preferences which have already been collected from people

• Outline any common themes from previous research or engagement work

• Identify any gaps in this insight or data

Contents:

1. Background – What is the Clinical Commissioning Group and why are we

carrying out this insight review?

2. The Area and Current Health Provision – Introduction to the local area.

3. Population – Who lives in Leeds?

4. Insight review – What do we already know about the needs and preferences of people living in this area?

1. Background – What is the Clinical Commissioning Group and why are we carrying out this review?

NHS Leeds Clinical Commissioning Group (CCG) is responsible for making sure that all people living in Leeds have access to the healthcare services they need, when they need them. We know that if we are to provide high quality, safe and compassionate services, we need to understand the needs and preferences of local people and use their feedback to improve our services. We have a statutory duty to:

• Involve patients and carers in planning, managing and making decisions about their own personal care and treatment (care planning).

• Involve the public in the commissioning process itself, so that the services provided reflect the needs of local people.

To inform the future commissioning of mental health services in Leeds, a summary of previous research and engagements with local people would be helpful to inform future developments of commissioning. This insight review seeks to pull together what people living in Leeds have already told us about their needs and preferences in relation to accessing mental health services, including access to crisis and early intervention services. It aims to highlight common themes and any gaps, in order to support future improvements to people’s experiences of receiving health and care services.

2. The Area and Current Health Provision – Introduction to the local area Leeds is an area of great contrasts, including a densely populated inner city area with associated challenges of poverty and deprivation, as well as a more affluent city centre, and suburban and rural areas with villages and market towns. Leeds has a relatively young and dynamic population and is an increasingly diverse city with over 140 ethnic groups including black, Asian and other ethnic-minority populations representing almost 19% of the total population compared to 11% in 2001. There are 94 GP practices which cover a population of around 870,000 people in Leeds. Primary Care Mental Health Services (PCMHS) are usually provided through GP practices to people who are feeling low, vulnerable or anxious. There are three different PCMHS in Leeds:

• Improving Access to Psychological Therapies (IAPT)

• Primary Care Mental Health Liaison Service

• Perinatal Mental Health

Community Links delivers PCMHS for the city: https://www.commlinks.co.uk/services/leeds/iapt/?search_location=&search_category=

Statutory mental health services are provided by Leeds and York Partnership Foundation NHS Trust (LYPFT) who are the main provider of specialist mental health and learning disability services in Leeds. They provide 24 different clinical services including community mental health, inpatient, crisis and autism services They offer support and treatment for a wide range of mental health conditions. https://www.leedsandyorkpft.nhs.uk/ Leeds City Council (LCC) and NHS Leeds CCG both commission a number of community-based adult mental health services from local third sector providers. “Third sector” is a collective term used to describe voluntary, community, charitable, and social enterprise groups and organisations, which usually operate on a not-for-profit basis. Where appropriate, third sector services will link in with ‘statutory’ NHS services, and with Council services, to provide a wider and more diverse service offer to support mental health service users. Third sector services cover a wide range of support services that can be categorised into some of the areas below:

➢ Crisis and urgent care support

➢ Supported accommodation

➢ Specialist community support and treatment

➢ Service user involvement

➢ Refugee and asylum seeker support

➢ Advice and information on mental health and wellbeing in Leeds

3. Population There an estimated 793,139 people living in Leeds, as of 2019. Of that number 49.1% (389,345) are estimated as being male and 50.9% (403,794) are estimated as being female. Leeds is above the national and regional average for people aged between 20-24 and 25-29, likely owing to the large student population.

18.9% (141,771) of the population come from minority ethnic communities. 12.5% (99,000) of Leeds’ population were born outside of the UK and 4.5% of households in Leeds do not have English as a main language.

Nearly 200,000 people live in the most deprived 10% of neighbourhoods (when ranked nationally). These people have 2-3 times the risk of a common mental health disorder compared to the general population. Specific associations/causes include – poor housing/homelessness/debts/unemployment. As of June 2020, around 3.5% of the population are classed as unemployed.

Leeds Observatory: https://observatory.leeds.gov.uk/

Mental Health Population

There are an estimated 106,000 people who, every year in Leeds, experience a

common mental health disorder. Over 50,000 of those are considered to be

‘moderate-severe’.

• Around 40% of GP consultations are mental health related, with 94,000

prescriptions for anti-depressants being dispensed during 2015/16.

• Anxiety appears to be the largest single mental health condition recorded

(75,000 a year), followed by depression (46,000) and people with both making

up around 27,000.

• There are nearly 8,000 people in Leeds recorded with a serious mental illness

(SMI). Leeds has a higher rate than the national average of people

experiencing first episode psychosis.

• People with a diagnosis of psychosis who live in the South and East of the city

are more likely to be admitted to hospital in an emergency/through A&E than

England averages.

Leeds has higher rates of people subject to the mental health act when compared to

the England average – rates are particularly high in the South and East of the city. It

is not clear whether this is due to higher need in Leeds or if it reflects that there

limitations on community services to be able to support people before crisis occurs.

Local stakeholders identify that there are a group of people whose needs are not

well met by current service provision (structured around common mental health

disorders or serious mental illness). This group is heterogeneous but includes people

who may have psychological needs related to unresolved trauma, complex social

problems and/or enduring depression.

Leeds has a greater number of people accessing drug/alcohol services who have a

comorbid mental health problem than modelled estimates predict. It also has higher

rates of service use contacts (for alcohol/drug services) from people with mental

health problems. This suggests high levels of need in the Leeds population.

Image showing prevalence of various mental health conditions in the NHS Leeds CCG are, taken

from https://fingertips.phe.org.uk/

Crisis services in the community offer well-evidenced alternative to inpatient stays.

Such services provided in Leeds are meeting significant mental health needs of

diverse groups– including people from LGBT+ communities and people from a range

of minority ethnic groups.

• 19% of women have a recorded common mental health disorder (CMHD) in

Primary Care, compared to 11% of men.

• People with sensory impairments are at increased risk of CMHD and experience

barriers in accessing mental health support. Nationally, 30% of people with a long

term condition (LTC) are estimated to have a CMHD.

• The trans population is at increased risk of experiencing poor mental health.

• Women in the perinatal period experience similar risk (20%) of CMHD as women

in general - however, they may experience barriers to accessing mental health

support associated with having young children and self-stigma. Young Parents in

particular are more than twice as likely to experience mental health problems in

the perinatal period as the population of childbearing women overall.

• There is significant evidence that people from BAME groups experience both

poorer mental health and increased barriers to accessing care. Within Leeds,

BAME groups are under-represented in primary care records as having a CMHD,

and are less likely than White British groups to finish a course of IAPT treatment.

Black women are at particular increased risk of CMHD, as are Asylum Seekers

and Refugees and Gypsy and Traveller groups.

• There is evidence that some people within Muslim communities experience

higher levels of depression which are more chronic in nature than in the general

population.

• National and local work highlights that LGB groups are at increased risk of

experiencing CMHD.

Leeds in Mind 2017, Mental Health Needs Assessment:

https://leedsobs.wpengine.com/wp-content/uploads/2018/03/LeedsinMind2017Exec-

summary.pdf

• People with learning disabilities have markedly worse health than the general

population as a whole and are therefore more likely to use health services

(Equality and Human Rights Commission, 2013)

• In Leeds there are estimated to be around 12,900 adults with a learning disability

(Joint Strategic Needs Assessment) and there are around 3,090 people recorded

by Leeds GPs having a learning disability (Leeds, the compassionate city:

tackling inequalities, 2017).

• People with autism are particularly vulnerable to developing mental health

problems. Mind (2015) found that existing services tend to treat people either for

their autism or for their mental health problems, while failing to recognise the

complex dynamic between the two.

COVID-19

The impact of the COVID-19 outbreak and local and national lockdown restrictions

and guidance have had far-reaching impact on people’s lives, especially their mental

wellbeing. More than two-thirds of adults in the UK (69%) report feeling somewhat or

very worried about the effect COVID-19 is having on their life

(https://www.health.org.uk/news-and-comment/blogs/emerging-evidence-on-covid-

19s-impact-on-mental-health-and-health).

There is evidence that people are experiencing both an increased awareness of their

mental wellbeing as well as experience of negative impacts brought on by the

current situation including:

• Local and regional lockdowns

• Vulnerable groups shielding

• The need for a change in behaviour and the need for face masks and social

distancing (and issues when these aren’t adhered to)

• Fluctuating changes in policy and what is permitted

• Changes to the way we work and the implications of these changes:

o Working from home – new way of balancing home life/work life:

▪ Changes to caring responsibilities

▪ Home-schooling

▪ Changes to the ‘working day’

▪ Lack of appropriate spaces to work for some

▪ Increase in domestic abuse cases

▪ Feelings of isolation if separated from work colleagues/social

isolation if at home alone

o Furloughed workers

o Concerns about job security

o Having to return to work whilst COVID-19 cases are still prevalent

• Being socially isolated, not being able to meet family/friends if not close or in a

‘bubble.’

A survey of over 14,000 adults by the mental health charity Mind has revealed that

existing inequalities in housing, employment, finances and other issues have had a

greater impact on the mental health of people from different Black, Asian and Ethnic

Minority (BAME) groups than white people during the coronavirus pandemic. The

online survey of over 25s in England and Wales found:

• Almost one in three (30%) BAME people said problems with housing made

their mental health worse during the pandemic, compared to almost one in

four (23%) white people.

• Employment worries have negatively affected the mental health of 61% of

BAME people, compared to 51% of white people

• Concerns about finances worsened the mental health of 52% of people who

identified as BAME, compared to 45% of those who identified as white.

• Other issues saw a similar pattern, including getting support for a physical

health problem (39% vs 29%) and being a carer (30% vs 23%).

4. Insight Review – What do we already know about the needs and preferences of people living in Leeds about mental health services?

In an insight review we look at feedback from various sources over the last couple of years. Where we find gaps, such as a lack of feedback from specific communities, we will arrange focussed engagement. This approach to engagement ensures that we start with the information we already have and avoid engagement fatigue. In this review we have explored feedback from. Each practice will follow the order below:

a. Feedback from Care Opinion (www.careopinion.org.uk) which provides an online platform for people to share their stories about accessing health and care services.

b. Feedback from recent NHS Leeds CCG engagements where we heard from the people of Leeds on different areas of mental health services.

c. Feedback from wider research and engagements which heard from the people of Leeds.

Feedback from Care Opinion -

https://www.careopinion.org.uk/services/rgd#/?page=1

As of Nov 2020, there are 374 ‘stories’ posted by users of LYPFT, the statutory

mental health service in Leeds, about half of them have been added in the last three

years. 20 of which have led to changes to the service

The majority of the stories listed are, in the majority, negative experiences with a

combination of crisis team, community mental health team, inpatient services, the

Single Point of Access (SPA) service as well as other services (including day units,

Gender Identity Services and CAHMS services being spoke of.

Notably, there has been a lot of feedback about members of staff more generally,

though there were some reports of good experiences and the difference it has made

to someone’s care, there have been more than double those stories in negative

experiences and the impact it has made. About staff, people told us that:

• Communication, or lack thereof, is notable, with people reporting not being

communicated with, or being communicated with poorly (use of acronyms,

expectations that people know what they mean) or not sending or receiving

information.

• Many staff seem to lack empathy, compassion and appear to be ‘going

through the motions’ without a true drive or care to look after the person who

needs help.

• Some reports of staff communication with service users has been very

negative and inappropriate, sometimes making the situation for the person in

crisis worse.

• A repeated mention about the tone and way admin staff handle the call of

someone ringing in crisis is noted too.

• The impact of staff’s attitudes and approach has meant that people are

choosing to not engage with the service, even if they were in a crisis situation.

“When in the middle of a crisis situation with my mental health, I was told by one of the staff

members working with me to grow up and act like an adult. I was already very distressed

and this didn’t help the situation at all.”

Service user, Care Opinion

“On a number of occasions I have had contact with police when I have felt suicidal and they

have called Leeds crisis team who on one occasion called me a fake, a liar, attention seeker

and that I was an elusive character. On another occasion I had called crisis team myself and

they never replied, a member of public called the police who arrived convinced me to get of

the bridge and talk to them crisis team were called and again I was made out to be a fake

who was only trying to get myself section 136 this has really upset me and makes me think I

don’t matter and what’s the point I now feel so alone with no one to talk to or turn to. I

phoned today at my wit's end desperate for help. The person that phoned me back after 2

hours waiting was cold, condescend, arrogant and made me feel like I wasn't worth helping.

If it wasn't for my caring husband I honestly think your services would have pushed me over

the edge. Not ineffective - downright dangerous. People like me have no support whatsoever

in Leeds. It's a tragedy. Shame on the person I spoke to today.”

Service user, Care Opinion

“This person said that if he wanted to do that he would have done it, and surely this is a cry

for help. There’s no actual help out here for mental health you just go round in circles to get

fobbed off onto someone else it’s like going around in one big vicious circle.”

Service User, Care Opinion

There hasn’t been any noted feedback on early intervention from Care Opinion over

the last three years.

Crisis:

People have told us that:

• Staff are often dismissive of their concerns and don’t offer any real help.

• This leads to people not wanting to access help in a crisis for fears of being

dismissed.

• There isn’t enough staff to support the needs of the crisis team.

• Wait times to be seen or be contacted are too long – some people have been

left without a response at all, despite being in a crisis situation.

• The interventions that crisis teams offer aren’t interventions and often aren’t

helpful, relying on the service user to do something that is helpful or that has

worked before – putting a lot of onus on the service user, in a crisis situation

to come up with something that helps. Others report being handed leaflets

and to contact a service when they open.

• There was repeated mention that people are ringing the crisis number to be

told that they don’t deal with crisis or that a service user has called the wrong

number. Often leads to service users calling lots of numbers with no clarity as

who’s job it is to help them.

My issue, my main issue - is that the NHS has known be now for 20 years. However, the

questions ask you are always 1. are you taking your medication 2. are you getting any side

effects 3. are you hearing voices

“The last call I told them I was seriously suicidal. I was going to seriously harm

myself Someone rang me back and didn't seem interested, just said -Well what do u want

me to do.”

Service user, Care Opinion

“I don't see any point in calling Leeds crisis team at all I just feel like a nuisance to them and

they can do nothing at all to help. They often say they only have one person working to

speak to (disgusting for all of Leeds) and sometimes I don't even receive a call back or its 8

hours + later.”

Service User, Care Opinion

“Just got off the phone with an admin person who told me "the crisis team is not an

emergency service" Erm, so who is the most appropriate person to call when trying not to

take an overdose? I asked when I would receive a call back. "In a while" is not a good

answer it could mean anything, I am Autistic, I need precise answers. I don’t call the Crisis

team because I am used to them being useless.”

Service User, Care Opinion

Community Mental Health

People have told us:

• They have not been able to change their care co-ordinator, even if they don’t

‘get on’ or develop a positive therapeutic relationship.

• Waiting times to access services are too long.

• Care isn’t person centred or doesn’t take into account people’s individual

needs – too rigidly sticking to criteria.

• An expectation from services that you know what they are talking about with

little explanation of what is happening or what services you can access, or

what things mean.

“Why don’t you have leaflets for patients who are referred? A leaflet should explain all the

abbreviations. I was new to the mental health system and everyone spoke in abbreviations.”

Service User, Care Opinion

Feedback from NHS Leeds CCG engagement work

Over the last five year the NHS in Leeds has carried out a range of engagements

which provide information about people’s mental health needs and preferences:

• Mental health services in Harrogate and Wetherby:

https://www.leedsccg.nhs.uk/get-involved/your-views/tewvmh2019/

• Support needs of parents/carers of children and young people with mental health

issues: https://www.leedsccg.nhs.uk/get-involved/your-views/mental-health-support-

parents-carers/

• Primary care mental health services:

https://www.leedsccg.nhs.uk/get-involved/your-views/primarycaremhservices/

• Long term plan for mental health in the NHS

https://www.leedsccg.nhs.uk/get-involved/your-views/mental-health-long-term-plan/

• Young people’s crisis service:

https://www.leedsccg.nhs.uk/get-involved/your-views/youngpeople-crisisservice/

• Self-harm in children and young people:

https://www.leedsccg.nhs.uk/get-involved/your-views/self-harm/

• Social prescribing:

https://www.leedsccg.nhs.uk/get-involved/your-views/social-prescribing/

We have worked alongside the people of Leeds on a number of pieces of

engagement work around mental health services, with over 3,000 giving us their

feedback. There have been a number of recurrent themes in carrying out this work

on mental health services in general:

• Local services – people have told us previously that they would like more

services to be available more locally to encourage people to attend and make

them less of a stressful activity to be involved with.

• Transportation – a common theme linked with ‘local services’ is that of the

impact of having to travel to reach services that are perhaps far away or have a

bigger impact, depending on where someone lives. Costs of transport, availability

and time to get to a location were common barriers to accessing services.

• Communication – people have told us that communication is vital to ensure

people know what is happening, what they need to do and what services are

available. People have told us that a lack of clarity about what services they can

access has been hindrance to them getting help.

• Waiting times – people have told us that the waiting times to access both an

assessment for support and support from services themselves can be frustrating

and detrimental to their own or their loved ones mental health. Equally, being

kept in contact about progress was identified as being important.

• Getting a referral/support – people told us that the referral criteria to access

services can be a barrier to getting support/help. People told us that the criteria

for accessing the service was confusing, inconsistent and often lead to people

‘falling between the cracks’.

▪ Focus on the whole person – a common theme is the importance of

acknowledgement and consideration in providing support to people with

additional conditions, such as autism or a learning disability. People emphasised

the importance of ‘whole person centred approach’, taking into account all

aspects of a person. People told us that there needs to be greater integration of

treatment of physical and mental health conditions.

• Mental health awareness – people told us that consideration and awareness of

people’s mental health is low, especially across older people and men.

• Better integration – people told us that services (statutory and third sector) don’t

talk to each other and this leads to inconsistencies and information being missed.

• Person centred care - people told us that the number of sessions that are

offered should be negotiated with the service user. People also told us that

mental ill health should be seen as a long term condition and that they should be

able to access support after their intervention has ended. Additionally, people

should be able to access the support they need as long as needed, providing it is

meaningful and working towards their recovery outcome goal.

▪ Staff - people told us that the knowledge, experience and attitude of staff were

vital to making mental health services work.

▪ Prevention - people told us that early intervention and prevention are vital in

educating and reducing demand on existing services. Work with young people

and education systems to raise awareness were suggested by many people.

Feedback from wider research and engagements which heard from

the people of Leeds

Crisis Cafes: people tell us that the cafes feel safe and that the staff have a positive

relationship with service users. People like the combination of one-to-one support. It

has been noted that at present there could be improvement in the way the cafes

interact and share information with statutory services (such as GPs, if people want

the option to do so). Considerations for the cafes include:

• Geographical spread of cafes could be wider and more accessible.

• Capacity – numbers of people requesting support (increase since COVID).

• Access for BAME communities

• Accessibility in terms of geographical location.

• Opening hours/increasing availability and equality of access depending on

where people live.

Dial House/Connect Helpline: people tell us that the specific BAME and deaf

provision that is provided is well received. People have been positive about the de-

escalation process including access to spaces to rest and being in a safe place.

Supported Accommodation Services: people tell us that they feel well supported

and that the services have good, wider links and that step down models work well.

Services are well utilised and highly thought of by both stakeholders and service

users. It has been identified that there are often regular vacancies for service users.

Services tell us that there needs to be strong links with housing and private sector

letting schemes.

Employment Support Services: the service seems to be working well and is

meeting its targets for people who enter and return to work or access the training

options. Referrals to the service seem lower than expected. Reported that

configuration alongside Community Mental Health Team (CMHT) has not achieved

collaboration/integration hoped for.

Services for Refugees and Asylum Seekers: people using the service have told us

they feel well supported. The services are well utilised and are well-thought of by

stakeholders and service users. Currently, demand is much higher than the available

resources. There is also a lack of clarity about what services can and should provide.

Mental Health Involvement Development Worker: The Together We Can (TWC)

group is useful and has succeeded in engaging a number of people. The focus on

developing a cohort of service users who are willing, and have the necessary

capabilities, to participate in system meetings and articulate the service user

perspective needs to be a key objective of this work.

Equally, it is imperative that TWC is representative of the diversity of Leeds

residents. It is often the same small group of people who attend, and it is not clear

that different perspectives and priorities are being represented. It is also important

that families and carers of service users are being reached through this work.

It is felt that this work needs to be refocussed and given priorities for activity that

better reflect what is needed from the role – a pool of service user “talent” reflecting

the diversity of the city, and with training/support to participate and represent the

service user perspective effectively.

We have learnt that although there is an expectation in Leeds for services to collect

and respond to service user experience as an ongoing process, it is often the case

that regular and substantial patient experience feedback isn’t being collected. Going

forward, there needs to be a significant effort across all mental health services to

collect and respond to this user feedback regularly; demonstrating an ongoing “You

Said, We Are Doing, How Can You Help” approach. The Together We Can group

has been involved in developing the Mental Health Framework 2014-2017 and a set

of six ‘I’ statements for Leeds.

Complex/high risk cases specialist community support and treatment: the

Community Support Team (CST) works with people with complex needs who find it

difficult to engage with statutory services. Adopting an assertive outreach approach,

CST workers will actively support service users with a range of potential problems,

working on a strengths based model to encourage and support individuals towards

agreed goals. Feedback from service users is generally positive, as are outcomes.

During the pandemic, CST has been working very closely with the Community

Mental Health Teams to provide additional support to as many people as possible.

However, demand for the service regularly outstrips demand, and has done so for

some time.

Advice and information on mental health support services: MindWell is the main

route for the people of Leeds to find out about the range of mental health and

wellbeing services for adults and older people, but people regularly tell us that they

are confused about what is available and how to access it, despite thousands of hits

on the site every month. Those without IT access, or who are unwilling/unable to use

digital resources, could be considered to be left behind by too much of a focus on

digital.

Mental Health Crisis Feedback – Healthwatch Leeds

Healthwatch Leeds carried out an engagement piece on mental health crisis in

Leeds in early 2019. They wanted to find out if people knew where to go for help and

support and how that support was once they had accessed it.

https://healthwatchleeds.co.uk/wp-content/uploads/2019/07/Crisis-Report-for-

website.pdf

▪ Almost half of people experiencing or supporting someone in crisis for the first

time told us they would not know where to go for support.

▪ Whilst they received feedback about people’s negative experiences they also

heard about people’s positive interactions with services particularly those in the

third sector and some primary care.

▪ Many of the comments about services both positive and negative were in relation

to staff. The interactions that people had with staff when seeking support and the

response they received had a big impact on their experiences.

▪ Quicker access to support when in mental health crisis was a strong and

recurrent theme.

▪ A lack of understanding of mental health by some mainstream services was

highlighted as an issue.

▪ The most common reasons why people did not seek help were:

• They did not know where to go

• They were not sure it was a crisis

• They had used a service before and not found it to be helpful or had a

poor experience

▪ Having someone to talk to was highlighted as being the most important and

helpful thing during a crisis.

▪ Out of those who responded to the question about further support only 46% said

that they were told about any further support that they could get after crisis.

▪ People talked about the need for better and earlier interventions to help avert a

crisis and highlighted long waiting times for mental health support services.

Particular groups highlighted that their additional needs or circumstances were not

taken into account when accessing mental health crisis services e.g. autism and

carers

CQC Survey of LYPFT – Community Mental Health Patient Experience:

The 2019 survey of people who use community mental health services involved 56

providers of NHS mental health services in England (including combined mental

health and social care trusts, foundation trusts and community healthcare social

enterprises that provide mental health services). They received responses from

12,551 people, a response rate of 27%. There are some stats on crisis feedback.

Full report: https://nhssurveys.org/wp-content/surveys/05-community-mental-health/05-

benchmarks-

reports/2019/Leeds%20and%20York%20Partnership%20NHS%20Foundation%20Trust.pdf

Summary report: https://www.leedsandyorkpft.nhs.uk/about-us/wp-

content/uploads/sites/8/2019/11/Community-services-survey-2019-summary-v2.pdf