Haringey Community Paediatrics: Pathway for children referred with physical disability

Email for referrals: whh-tr.compaed-har@nhs.net

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, the most common 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 a Haringey GP or attend a school in Haringey.

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
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Who can refer and how?

We accept referrals from any professional. If you are concerned about your child, please discuss your worries with your GP, health visitor or other professional who is working with you and your child, as they can make a referral.
 
While we do not accept referrals directly from families, the referral must include acknowledgement that you have consented to the referral.
 
A referral form is included in the Associated Documents section of this web page for use by your professional.
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Care Pathway

Detailed Actions to be Completed

Referral Received

When your child is being referred to this service this should be discussed with you so that you are aware of the reasons for the referral and your consent given

Please note:

  • 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 paediatrician who will:

  • Review the referral of your child and take a decision based on the information provided
  • Request additional information if there are any gaps identified in the information provided
  • Make any additional referrals to therapy services, e.g. physiotherapy, speech and language therapy etc, so that any waiting time for these services can be minimised
  • Take the more complex cases to our multidisciplinary meeting with the Child Development Centre therapists to ensure that we coordinated care between paediatricians and therapists
  • We will do our best to attend a hospital discharge planning meeting where possible/ appropriate

     

The national standard is for all children to be seen within 18 weeks of referral – although we aim to see children well before then.

 
 
Assessment Phase
 

It may take several appointments to complete the holistic paediatric assessment

Your child will be seen by a paediatrician who will undertake a holistic assessments that will take in areas of your child's development including motor skills, communication, cognitive abilities, nutrition, vision and hearing, and their medical, family and social history

The appointments offered may be:

  • Uni-disciplinary – the child is seen by a paediatrician, OR
  • Multi-disciplinary – this brings together a paediatrician and therapists at the same appointment

As part of the assessment the paediatrician will agree a plan for the following with you:

  • Any investigations and how the results will be fed back to you
  • Referrals to local services, e.g. therapy services, early intervention programmes, the voluntary sector, child and adolescent mental health services, social care and tertiary centres
  • Prescribing of medications

 

At the end of the assessment if a diagnosis can be confirmed this will be discussed in detail with you as will the management plan and follow up.
 
 
 
Follow-up to 2 years of age

In these appointments with the paediatrician you will have the opportunity to discuss further your child’s diagnosis and outlook, and support you in coming to terms with your child’s difficulties and develop positive outlook.

The paediatrician will also:
  • Review your child’s development as set out in the initial appointment above 
  • Discussion where appropriate any increased risk of epilepsy, the possibility of interventions such as a gastrostomy and other interventions as indicated
  • Sign post and refer you to early intervention programmes and support, including the voluntary sector e.g. Markfield
  • Make an anticipatory notification of special educational needs to colleagues in Education
  • Support parents
  • Discussion with you our ways of describing children with physical disability, e.g. Gross Motor Function Classification System (GMFCS) levels
  • Plan with you the need to monitor your child’s hips and spine
  • Consider referrals for Child and Adolscent mental Health Service (CAMHS), counselling and Disabled Children's Team in social Care
  • Monitor your child’s growth and plot on appropriate chart
  • Agree the timing of a follow up appointment

 
Follow-up in
Pre-School years

In this time your paediatrician will continue to work with you to ensure that your child’s medical and developmental needs are addressed.

They will use a standard structured review pro forma to ensure that all of the following issues are covered:

  1. Your child’s movement problems:
    • Reassess GMFCS level at each appointment
    • Review your child’s hip and spine monitoring
    • Consider with you the management of spasticity and dystonia; this wold include consideration for a referral to our Botox service or to a tertiary centre for orthopaedic and spinal follow up
    • Referrals to orthopaedics and spinal surgeon as indicated
  2. Issues that may impact on your child’s general development and learning
    • Make referrals to other local medical services as required, e.g. Audiology, ophthalmology, dental
    • Review current medical treatments, interventions therapy inputs
  3. Your child’s general health:
    • Undertake a general review to identify potential medical problems that are more common in children with movement disorders, e.g. screening for breathing difficulties, sleep disorder, pain, constipation, gastro-oesophageal reflux, excess drooling etc, and make referrals for problems identified if needed
    • Review your child’s immunisation status
    • Measure height and weight and plot on appropriate chart, and consider nutritional status
    • Consider additional supports to your child and family through referrals for CAMHS, counselling, Disabled Children's Team in Social Care
    • Arrange for any blood tests as required, e.g. vitamin D, iron

     

Follow-up in
School years

You will continue to see your paediatrician as before. During this time the reviews will cover the same ground 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 where we have a full complement of therapist.

Children attending mainstream school will be followed up in clinics in the Child Development Centre – there is the option for review in a multidisciplinary clinic, depending on the complexity of the medical issues.


Discharge or
Transition to
Adult Services

When our work is complete then we will discharge your child from follow up. However, there remains the possibility of us seeing you and your child again if problems emerge. For some, your child will remain under therapy services and your therapist can flag up any concerns that you have with the paediatrician at one of our multidisciplinary meetings. Alternately, someone such as your GP can refer you back to be seen again.

If your child is under follow up with the Community Paediatric Service coming into their adult years, typically this will be a young person who is in one of the borough’s special schools, then we will participate in the transition process to adult services and make any relevant referrals to adult medical services and/or the Adult disability service.
 
 
 
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Associated Documents

Resources

Useful links  
 
This is an NHS website that gives information on Caring for a disabled child that can help in making your daily parenting duties, such as feeding, toilet training.
 
 
Markfield
Markfield is a community centre in Haringey which promotes the dignity, choice, independence and community inclusion of Disabled people and their families.
 
 
 
The London Borough of Haringey 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 Haringey.
 
 
This information is for parents/carers of children with special educational needs and/or disabilities. It explains the support offered in Haringey for those children and young people called the ‘local offer’.
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.
 
This is the Haringey Council site for adult learning disability services which also includes information on health services.
 
 
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Quality Standards

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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Working on it!