Islington Community Paediatrics: Pathway for Children Referred with Physical Disability

Who is this care pathway for?

This care pathway has been written primarily for families and carers of a child who had an emerging or identified physical disability, an example of which is cerebral palsy.
 
This information is also likely to be of interest and helpful for professionals as well.

Who do we see?

We see children where there is an emerging or identified physical disability, who have an Islington GP or attend a school in Islington.

How to use this tool

When you scroll down you will see the information provided in this care pathway is set out in the following sections:
  • Who we see?
  • Who can refer and how?
  • Care Pathway: gives a flow-diagram type overview of the pathway
  • Detailed actions: sets out in more detail what is involved in the different parts of pathway
  • Associated documents: more for use by professionals
  • Resources: these are links to relevant web sites
  • Quality standards: this is a list of the quality standards that we report on annually on this web site and these are designated by QS where they appear in the text

Care Pathway

Care Pathway

Detailed Actions to be Completed

Referral Received

Please note that in our service:

  • We use an electronic patient record to hold our clinical notes and documents. This in turn is accessible by other professionals who work for Whittington Health and helps greatly with our information sharing
  • At the end of each appointment we will write a report that is sent to you with an agreed plan and copy list of all relevant professionals. We aim to send this out within 2 weeks of the appointment (QS-1)
We welcome and actively seek, and act on feedback from all who use our services (QS-2).
 
 
 
Referral Triaged

All referrals are triaged by a consultant paediatrician who will request additional information if needed e.g. discharge summaries and clinic letters.

If your child’s referral is accepted they will be seen in a paediatric clinic and depending on the complexity of the case additional referrals will be made to therapy services if not already done.

For complex cases we take these to our multidisciplinary team meeting to ensure that we coordinate care between paediatricians and therapists.

 
Assessment Phase
 
It may take several appointments to complete the diagnostic evaluation. The appointments offered may be:
  • Uni-disciplinary assessments – separate assessments undertaken by a paediatrician or relevant therapists, or
  • Multi-disciplinary, e.g.  in our Physical Developmental Clinic – this typically brings together a neuro disability paediatrician and physiotherapist

The paediatrician will discuss with you:

  • Any investigations as part of diagnosis and ongoing management
  • Tertiary referrals as required
  • Prescribing of medications

 

If a diagnosis is made you will be given written information relevant to your child’s condition or directed to where you can find such information.

 
Follow up to 2 years
of age

In these appointments the paediatrician will:

  • Have further discussion with you about the diagnosis and prognosis
  • Discuss any further assessments re global development, vision, hearing, cognitive and motor development, hip stability, nutrition, dental health, language and psycho-social concerns
  • Discuss with you more complex medical issues as appropriate e.g. early discussions where appropriate regarding the possibility of gastrostomy, increased risk of epilepsy and possible future interventions
  • Make referrals and sign post you to early intervention programmes and support, including the voluntary sector e.g. Centre 404
  • Complete a notification of Special Educational Needs for the Local Education Authority
  • Discussion and arrange standard monitoring for your child’s hip and spine
  • Consider with you referrals onto CAMHS, counselling and Disabled Children's Team in Children’s Social Care
  • Measure height and weight and plot these on the appropriate growth chart
  • Agree follow up appointment

 

 
Follow up to 5 years
of age

In these appointments the paediatrician will revisit the issues as outlined in the previous row and reassess your child’s progress. In addition if not already done, they will consider the following issues:

  • Nutritional blood tests as required e.g. Vitamin D, iron
  • Consider the management of muscle tone and positioning
  • Make referral to audiology, ophthalmology and our community dentist as required
  • Undertake a structured review of related medical issues, e.g. sleep problems, pain, constipation, reflux, excess drooling
  • Review immunisation status
  • Review respiratory function and general health
  • Copy letters to education with consent
  • Tertiary referrals as required, e.g. orthopaedics, neurology
  • Referral to our local Botox clinic if indicated

 

 
Follow after 5 years
of age

Your paediatrician will continue much as for the preschool years – the timing of the follow up appointments will be agreed with you based on the medical issues.

Children who attend a special school will be seen in their school while children attending mainstream school will be followed up in clinics at the Northern Health Centre.

  
 
Transition to Adult Services

Preparation for and transition into adult services is a multidisciplinary process involving Education, Social Care and Health. If your child is still under our care we will participate in the transition process to adult services and make any relevant referrals to adult medical services.

  
 
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Associated Documents

Resources Table

Useful links  
This is an NHS website that gives information on cerebral palsy, its symptoms, causes, diagnosis, treatment and complications.
 
 
NICE - Spasticity in children and young people
Spasticity in children and young people with non-progressive brain disorders: Management of spasticity and co-existing motor disorders and their early musculoskeletal complications - NICE guidelines [CG145] Published date: July 2012
 
 
 
Scope is a charity that exists to make the UK a place where disabled people have the same opportunities as everyone else.
 
 
Centre 404 is a voluntary sector organisation that offers a range of high quality services to assist children and adults with a learning disability and their family carers. These include: direct support, information, respite, activities, advocacy, help with personal budgets and form filling, and access to social groups and other local networks.
 
 

The London Borough of Islington Disabled Children's Team (DCT) provides services for children with disabilities and their families.
Their aim is to provide a quality, child-centred service for disabled children and young people (and their families or carers) who live in Islington.

 
The summaries the Islington Local Offer of all the help there is in the Islington area for children and young people aged 0-25 with special educational needs and disabilities.
 
 
Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

is under 16 AND has difficulties walking or needs more looking after than a child of the same age who doesn’t have a disability
 
 

 
When a child has exceptional need for education, health and social care support that cannot be met from resources/ assessments/ interventions normally available, they will need an Education, Health and Care Plan. 
 
 
When a child has exceptional need for education, health and social care support that cannot be met from resources/ assessments/ interventions normally available, they will need an Education, Health and Care Plan (EHCP).
 
 
 
The Learning Disability Partnership works with adults with learning disabilities and this one of the services we would be in contact with as part of the transition into adult services.
 
 
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Quality Standards Table

QS-1
We will send out our clinic letters within 2 weeks of the appointment
 
QS-2
We welcome, actively seek and act on feedback from all who use our services
 
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Page last updated: 10 Aug 2016
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