East Sussex Children’s Integrated · Neuromuscular conditions which involve a progressive loss of...

Version 3: February 2017 1

Review Date: August 2018

East Sussex Children’s Integrated

Therapy Service

Referral Guidance



CONTRACT In Scope

REFERRALS ACCEPTED

CONTRACT Out of Scope

REFERRALS NOT ACCEPTED

Age Criteria:

Children and Young people 0-16 years

16-19 if in full time education in East Sussex

16-19 years if not in full time education

Moderate to severe global development delay

Neurological conditions affecting development and posture e.g.

cerebral palsy, muscular dystrophy etc. Rehabilitation following multi-level surgery who are known to

CITS

Acquired brain injury, for example post encephalitis/near

drowning NB this does not include intensive rehabilitation and

children and young people should be ready for discharge to community therapy services.

Oncology

Palliative care

Syndromes affecting neurological development

Developmental co-ordination disorder (DCD) – subject to DCD

pathway criteria Eating and drinking difficulties relating to neurological

developmental disorders.

Respiratory conditions that require teaching of clearing of

secretions e.g. cystic fibrosis

Orthotic provision for children on active CITS caseload ASD diagnostic pathway for all children referred whilst still in

primary education

Paediatric musculoskeletal conditions:

All Children presenting with primary orthopaedic problems, for

example

o Adolescent joint pain

o Post fracture rehabilitation o Sprained ankle

o Osgood Schlatters; anterior knee pain, Perthes disease o Idiopathic scoliosis/back pain

o Idiopathic toe walker with no underlying neurological pathology, or post serial casting if not already known to CITS

service and non-neurological in origin

These children should be referred to MSK services

Podiatry services for children:

o Minor foot/gait anomalies for example flat feet, in-toeing with no

associated neurological delay o Shoe raises for children who are not on active CITS caseload – these

children should be referred to surgical appliances

Scoping document



CONTRACT IN SCOPE CONTINUED

Language – subject to completion of specified programmes in

settings and schools Phonological disorder

Developmental verbal dyspraxia

Voice disorders

Hearing impairment

Cleft palate and non-cleft velo-pharyngeal insufficiency

Severe language delay, if not in line with cognitive levels

Dysfluency

Selective Mutism

Augmentative and alternative communication

Juvenile idiopathic arthritis

Talipes/Ponseti

Hip dysplasia/Pavlik harness

Severe hypermobility if condition is significantly impacting on

gross motor functional ability

Torticollis

Erb’s palsy

Post orthopaedic surgery for children on CITS caseload with

pre-existing developmental or neurological condition Chronic fatigue syndrome/Chronic regional pain syndrome –

where children are under the primary care of CAMHS/primary

mental Health Services

Severe sensory processing difficulties in children over 3 years,

affecting function in at least 3 defined areas of self-care or activities of daily living. Please note this does not include attention

in the classroom. Serial casting post Bo-tox

CONTRACT OUT OF SCOPE CONTINUED

General

o A single diagnosis of hypermobility where there are no associated

functional difficulties o Weight management referrals

o Protective helmets for children with epilepsy who are not on CITS active caseload – these helmets are ordered by the epilepsy specialist

nurse

o Handwriting difficulties without additional functional difficulties o CITS does not provide the following therapeutic approaches – ABA,

Conductive education

Orthotic provision

o For non CITS caseload – see podiatry services and helmets

ASD Diagnostic pathway for Children over 11 (NB these children should be

referred to CAMHS)

Paediatric In-patients Therapy provision to in-patients is not provided.

Pathways will be in place to facilitate early hospital discharge.

In-reach advice will be offered to support in-patient management of

children on active CITS caseload with complex physical disabilities Therapy provision to individual babies on SCBU is not provided; but

pathways to facilitate transfer of care to Community therapy services on

discharge will be put in place.

There will be case by case discussions with Commissioners to agree bespoke funding packages for children requiring:

Intensive rehab post innovative out of area treatment (charity funding)

Intensive rehab following early discharge from head injury unit



Global development delay

Syndromes affecting neurodevelopment

Cerebral palsy

Acquired brain injury

Physiotherapy

Hip dysplasia/ Pavlik harness

Erb’s palsy

Torticollis

Respiratory

Talipes/ Ponseti


Orthotics

Speech and language therapy

Voice

Speech sound delay/disorder

Language delay/ disorder

Fluency/ stammering

Hearing impairment

Selective mutism

Cleft palate

Occupational therapy/ speech and language therapy

Eating and drinking disorders

Autism spectrum disorder

Augmentative/ alternative communication

Occupational therapy

Visual perceptual difficulties

Activities of daily living: self care

Minor and major adaptations

Functional skills affected by sensory difficulties

Physiotherapy/ occupational therapy

Developmental co-ordination disorder

Hypermobility

Equipment

East Sussex Children’s

Integrated Therapy Service

This graphic describes the

children we work with, both

in terms of their diagnosis

and needs.

It shows when the

disciplines might work

together. However two or

more disciplines may not

always be needed.

Sometimes they may be

involved with a child and

family at different times

depending on the child’s

changing needs.

Referral forms are available

from [email protected]

Our standard for referral

acceptance to initial

assessment is 10 weeks.

If a referral is declined we

send a letter to explain why

to the referrer and parent

within 10 working days.



The emphasis of Occupational Therapy is enabling. This means helping children to overcome functional difficulties that affect daily life and may present at home or in the school environment.

Referrals are specified for children who present with significantly delayed motor development which impacts on their daily functioning. This includes children with an underlying neurological condition, motor-planning difficulties, global developmental delay, ASD (where skills are not in line with diagnosis), upper-limb dysfunction, palliative care and life-limiting conditions. There is an expectation that all school-age children access the Jump Ahead programme, designed to address fine/gross motor skill acquisition and Sensory Circuits (sensory-motor programme) at school before a referral is considered.

Postural management Occupational Therapists work closely with Physiotherapists to identify appropriate seating systems or equipment to support 24 hour postural management of children with complex physical disabilities. Seating can range from low level postural support to complex, dynamic modular seating systems. Similarly, Occupational Therapists will work closely with their Physiotherapy colleagues in relation to prescription of sleep systems to ensure correct positioning at night-time.

Activities of daily living Occupational Therapists are able to identify and work with children to identify the underlying difficulties preventing a child from being as independent as possible in areas of self-care. Interventions may be in the form of a programme, advice, direct intervention from an occupational therapist or Integrated Therapy Assistant under the guidance of the treating therapist or by adapting an activity to meet the needs of the child. Interventions may include the following: Dressing, use of techniques such as backward chaining to support skill progression Eating and drinking, e.g. use of cutlery, dycem (non-slip mat), plate-guards and activities Access to suitable bathing/ toileting facilities

Occupational Therapy Guidance Details



Equipment/ minor adaptations to support daily living

Occupational Therapists may provide equipment to facilitate independence either in the home or to access education. Interventions may include the following: Access to bathing/ showering: bath-lifts, bath-boards, grab rails and shower-chairs Toileting - commode, toilet-frames, specialist modular toileting systems Manual-handling equipment e.g. mobile hoists, transfer-boards, slide sheets

Adaptations (0-18) over 18’s should be referred to Adult Social Care For children with complex physical disabilities or challenging behaviours compromising their safety in the home, there may be a need to adapt the home/ and or school environment. Major adaptations are subject to criteria set out in the Disable Facilities Grant legislation and the budget is held by local councils. Occupational Therapists are responsible for assessing need under this legislation and making clinical recommendations regarding reasonable adaptations to meet a child’s needs. It is not always possible to provide a solution within the grant funding, in such cases the Occupational Therapist will work with the wider multi-agency team to support a family with exploring re-housing options. Motor co-ordination difficulties which severely affect functional daily living a referral will be considered where children have accessed the Jump Ahead programme or Sensory Circuit programme but there are still ongoing difficulties e.g.:

Sequencing movements Spatial awareness Body awareness Motor planning

Evidence is required where a child has been unable to progress and Jump Ahead should be completed a minimum of 3 times a week for 4 academic terms.



Visual perception Visual motor integration impacts on handwriting and letter formation. Please note we do not deliver handwriting programmes but will assess and advise schools regarding implementation of appropriate programmes where applicable. Sensory processing There should be evidence of severe sensory processing difficulties in at least three defined areas of self-care or activities of daily living e.g. using cutlery, managing buttons, dressing, toileting difficulties, pencil grip or personal hygiene. Attention does not count as an activity for daily living. We are not commissioned to provide interventions for children with sensory processing difficulties under age of 3 unless they are under a specialist Tertiary Centre such as Evelina Children’s Hospital or Great Ormond Street Hospital for sensory processing difficulties. Upper-limb Where applicable OT will provide upper-limb programmes to promote function and development of self-care. Complex cases such as children with neurological impairment may be provided with a thumb or wrist splint where appropriate.



Neurological concerns or conditions affecting development please refer in for any of the following:

All children with a new diagnosis of Cerebral Palsy (CP) or showing signs of an evolving motor disorder.

Children moving in to the area with an existing diagnosis of CP who have functional difficulties.

Babies and children presenting with any of the following:

- Abnormal tone

- Asymmetrical movement or unusual movement patterns. W sitting, bottom shuffling and in-toeing are not indications of an

abnormal movement pattern unless abnormal tone is present

- Functional difficulty i.e. difficulty standing or walking and out of line with normal developmental parameters

- Delayed milestones or poor quality of movement


CITS do not deliver intensive rehabilitation. The child should be ready for discharge to community therapy services

Neuromuscular conditions which involve a progressive loss of functional motor skills E.g. Charcot Marie Tooth, Spinal Muscular Atrophy,

metabolic disease, muscular dystrophy)

Treatment and frequency will vary depending on the age and the stage of the child.

All children with a new diagnosis of neuromuscular disease

Early Years children with a plateau of gross motor development for more than 6 months

Children demonstrating a regression or loss of motor skills

Post orthopaedic surgery related to their condition

Developmental concerns including moderate to severe global developmental delay and syndromes

Please see developmental table below. Developmental norms are taken from Mary Sheridan, Birth to Five Years. 4th Edition.

Physiotherapy Guidance Details



Please note: Bottom shuffling is not an abnormal movement pattern. Many children who bottom shuffle instead of crawling to move around the floor start walking at a later age.

Activity Usual milestone Refer to Physiotherapy

Independent floor sitting 5 – 9 months 10 – 12 months

Independent rolling -

From front to back

From back to front

5 – 6 months

6 – 7 months

8 – 10 months (may need referral to

physiotherapy earlier if there is a

concern about head control)

Pulling to stand 7 – 12 months 13 – 16 months

Cruising around furniture 9 – 16 months 17 – 20 months

Independent walking 9 ½ – 17 ½ months (children

who bottom shuffle are usually

delayed in walking 17 – 28

months)

18 ½ months

Jumping 2 ½ - 3 years 4 years (a child who is not jumping

at three is likely to have been

known to the service previously for

delayed walking)

Climbing stairs 3 years (up and down holding a

hand or a rail, usually 2 feet per

step)

4 years (a child who is struggling

with stair climbing at three is likely

to have been known to the service

previously for delayed walking)



Developmental coordination disorder

Children with motor coordination difficulties would be seen either by an Occupational Therapist or Physiotherapist. Please see OT guidance on

motor coordination difficulties for more information (page 6).

Toe walkers

The service would not normally accept referrals for toe walkers with no obvious neurological signs. Children should be referred if:

There is asymmetry

Not possible to achieve 90 degrees at the ankle and there are associated developmental concerns or altered muscle tone. Where there

are no associated concerns, or if the toe walking is intermittent then referral to musculo-skeletal physiotherapy service provided by East

Sussex Healthcare Trust is more appropriate

Toe walking with unusual body posturing or movement

In-toeing

It is very common for young children’s feet to turn in when they walk. This is a common normal variant.

Referral to physiotherapy is only indicated if there is:

Significant asymmetry

Pain

Metatarsus adductus (Figure 1) where it is not possible to passively correct the

position of the forefoot to midline

Orthotics

Figure 1



This provision is only for children already on the CITS caseload. No physiotherapy intervention is indicated in children with flat feet or feet that

turn out. If pain is present then a referral to podiatry services provided by East Sussex Healthcare Trust is advised.

Musculoskeletal problems

Children presenting with musculoskeletal problems should be referred to the appropriate Musculoskeletal (MSK) Physiotherapy Service.

We do accept referrals for babies with musculoskeletal problems this could include the following:

Congenital foot abnormalities e.g. Talipes (club foot)

Preferential head turning (Torticollis)

Hip dysplasia (DDH)

Shoulder dystocia with apparent neuromuscular signs (Erb’s Palsy)

Chronic fatigue syndrome and chronic regional pain syndrome

Children with chronic fatigue syndrome and chronic regional pain syndrome can only be referred to CITS physiotherapy where they are under

the primary care of CAMHS. Physiotherapy can advise on graded exercise and pacing of activities.

Hypermobility

Only refer to CITS physiotherapy when the condition is significantly impacting on gross motor functional ability e.g. causing sleep disturbance on

a regular basis or impacting on attendance at school.


Referrals are accepted for children with functional difficulties at home or at school who require advice on long term management of their

condition.

Respiratory conditions

Referrals to CITS physiotherapy will be accepted for children who require teaching techniques to help clear secretions e.g. cystic fibrosis.



Please note that the flowcharts and development norms charts for comprehension, expression and speech sounds should no longer be used

to accompany referrals for speech and language. Completion of the referral form should be sufficient, though further evidence e.g. Ages and

Stages Questionnaire, Schedule of Growing Skills, Language Checkers and East Sussex Speech Language and Communication Monitoring Tool

can all be submitted as further evidence for referral.

Dysfluency also called stammering or stuttering

Referrals considered from 27 months after the integrated health review

Many children experience non-fluency when they start to talk in phrases and sentences between 2-3 years. Usually this non-fluency subsides

within 3-6 months. If there is no sign that the fluency is improving after this time we would advise a referral. In particular where the child is

aware of their fluency difficulty we would advise immediate referral.

Selective Mutism


Selective mutism is more than shyness alone; children who have selective mutism will talk freely in some situations, e.g. at home, but will have

strict rules about where they talk and who they talk with. For example, they may stop talking at home if someone outside the immediate family

unit joins them. The inability to speak interferes with children’s ability to function in that setting, and is not better explained by another

behavioural, mental or communication disorder. We would always advise referral where selective mutism is a concern; outcomes are much

better with early intervention.

Speech and Language Therapy Guidance Details



Eating and Drinking

Referrals considered from birth

Consider referral when you see the following:

Baby has difficulty establishing or maintaining a sucking action. Any coughing, choking, colour change or nasal regurgitation

Baby is distressed when feeding or straight afterwards, they may also vomit a lot, draw legs up in pain, unable to suck on a teat, weight

loss, speak to G.P, then refer

Child unable to chew a range of textures or manage family meals, may become distressed, cough, choke at mealtimes or vomit, weight

loss

Eating and drinking difficulties as a result of degenerative condition

It is important to consider that children may present with behavioural feeding difficulties such as gagging on specific textures, rigidity

around times of eating, aversive behaviours around temperature of foods, colour of foods, texture of food and smell of food. Referrals

for children who only have behavioural difficulties in relation to eating and drinking would not usually be accepted.

If you are unsure about whether to refer, please contact the service for further telephone advice.

Speech sound delay/ disorder

Referrals considered from 3 years

Early Years: Referrers should use the general ESCITS referral form (Nov 16 version). Children with significant speech sound delay/ disorder aged between 2 and 3 years will usually present with a significant language delay and any referral would be accepted on this basis (see below). By the time a child reaches their third birthday they should be mostly intelligible to most adults although they will still have several speech immaturities. If a child is still very difficult to understand after the age of 3, a referral should be considered.

School Years: Referrers should use the school years primary or secondary SLT referral packs when pupils have speech, language and communication needs but no obvious occupational therapy or physiotherapy needs. These packs are available from [email protected]. Please note that at primary age, referrers are expected to evidence 12 weeks (2 terms) of 1-1 or small group work on speech targets from the Speechlink© programme or equivalent prior to a referral being accepted. These programmes are carried out at the child’s local school.

mailto:[email protected]



Language delay/ disorder


Early Years: Referrers should use the general ESCITS referral form (Nov 16 version). Referrals are not accepted under the age of 27 months unless the language delay is part of a severe global developmental delay or neuro-developmental disability.

For children over 27 months where a child’s language or communication is out of line with their other development, a referral should be considered. Nursery settings may also submit the East Sussex Speech, Language and Communication Monitoring Tool to identify a significant communication difficulty.

School Years: Referrers should use the school years primary or secondary SLT referral packs when pupils have speech, language and communication needs but no obvious occupational therapy or physiotherapy needs. These packs are available from [email protected]. Please note that at primary age, referrers are expected to evidence 12 weeks (2 terms) of 1-1 or small group work on language targets from the Speechlink© programme or equivalent prior to a referral being accepted. These programmes are carried out at the child’s local school.

Voice


Referrals for children with voice problems should always come through ENT or other specialist tertiary centre. If there are concerns about a child’s voice quality (e.g. hoarseness, voice loss etc.) this should be investigated via ENT services first.

Cleft palate


Children with cleft palate sometimes experience feeding or speech sound problems. They are usually referred to us by tertiary services but can be referred directly (please see under Speech sound delay/disorder and Eating and Drinking difficulties).

mailto:[email protected]



Hearing Impairment


Referral for children with hearing impairment is always through Audiology or ENT or other specialist tertiary centres.

Severe global developmental delay


Early Years: A referral should be considered for early years children with severe developmental delay. Please carefully consider whether the referral would be best initially directed to CITS or iSEND Early Years and avoid simultaneously referring to iSEND Early Years. You are welcome to contact CITS or iSEND Early Years by phone to discuss if you are unsure. If the child is already known to iSEND Early Years please discuss with your Early Years practitioner before referring.

School Years: Pupils with global developmental delay will be considered if the language difficulties are impacting significantly on developing functional communication e.g. via Children with Alternative and Augmentative Communication (AAC). For pupils in special schools, the teacher or parent should discuss with any CITS colleague who regularly goes into the school. They will be able to arrange for a CITS SLT to discuss or review the pupil’s speech and language needs. For pupils in mainstream schools, please see under Language delay/ Disorder above for how to refer.

Syndromes affecting neuro development


A referral should be considered for early years children with syndromes affecting neuro development, however if the child is known to iSEND Early Years’ Service please discuss with your Early Years practitioner before referring. Referral for school years children with a syndrome affecting neuro development will be considered if the language difficulties are impacting significantly on developing functional communication e.g. via AAC. For all children please see above for eating and drinking guidance.



ASD


SLTs work with Paediatricians as part of the multi-disciplinary assessment pathway (via Paediatrician referral). School years children should be referred if the the language difficulties are impacting significantly on developing functional communication, if there is limited educational progress or to support transition. Please see under Language delay/ Disorder above for how to refer. Schools should be able to provide support for social communication difficulties as part of their local offer.

Cerebral Palsy


Referral for children with cerebral palsy is always through specialist tertiary centres or within the CITS service.



Referral for children with an acquired brain injury is always through specialist tertiary centres or within the CITS service.

Alternative and Augmentative Communication (AAC)

Children with AAC needs will always have been previously referred because of speech, language or communication needs and the therapist will be able to advise on AAC as part of case management.

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