Haringey Community Paediatrics: Pathway for Down Syndrome

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 has a diagnosis of Down Syndrome.

This information is also likely to be of interest and helpful for professionals as well.

Who do we see?

We see children and young people up to 18 years of age who:

have a diagnosis of Down�s Syndrome

AND
have a Haringey GP OR are at school in Haringey

Most of our children are referred by the paediatricians in the hospital in which your child was born. If this hasn�t happened, then if you ask your GP or Health Visitor, they will be happy to complete the referral form.
Just to note that we do not accept referrals directly from families.

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

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

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. Additional information may be requested if there are any gaps identified in the information provided. From the information available, additional referrals to therapy services may be generated, e.g. physiotherapy, speech and langue therapy etc. All children in this care pathway are referred onto our specialist HV who will make contact with you. In keeping with national standards children are offered their 1st appointment at 6 months of age, then followed up 6 monthly to 5 years of age, and there after 2 yearly while in school by their school nurse.
First Appointment	You will be seen by a paediatrician who will go through the following: Check growth and plot onto a gender appropriate Down Syndrome growth chart Check general development Refer to Audiology Refer to Speech and Language Therapy Refer to Dietician if there are any concerns about feeding or child is over/underweight Consider screening for coeliac disease if there are any concerns
Follow-up to 5 years of age	At the follow up appointments your paediatrician will: Review your child�s development Arrange for standard annual blood tests by way of screening for any medical problems found more commonly in people with Down�s Syndrome At 2 years of age your child will be referred to an Ophthalmologist for screening for visual problems and to our local Education Service so that preparation for education can begin early.
Follow-up after 5 years of age	When your child stars at school his or her health monitoring will pass to their school nurse who will do this on a 2 yearly basis. At these reviews the school nurse will: Check for any health concerns using a standard pro forma which is sent to the paediatrician when complete Arrange for a standard set of blood tests � the results go to the paediatrician who will feed this back to you Check that vision and hearing monitoring are ongoing If there are any specific concerns the school nurse will liaise with the paediatrician.
Transition to adult services	Preparation for and transition into adult services is a multidisciplinary process involving education, social care and health. The school nurse will participate in this and liaise with the paediatrician who will make any referrals needed to adult medical services.

Associated Documents

Community Paediatrics New Referral Form (Haringey)

Down Syndrome Information Leaflet

Down Syndrome New Patient Questionnaire

Medical Issues in Children with Down Syndrome

Parental Questionnaire for Downs Syndrome Clinic

School Nurse Guidance for Children with Down Syndrome

Down Syndrome Clinic Proforma Age 6 months to 5 years

Resources

Useful links
Down Syndrome Association	This is a registered charity with Downs syndrome, their parents, carers, and professionals.
Downs Syndrome Medical Interest Group	This site provides essential information for healthcare professionals on 'best practice' medical care for people with Down syndrome in the UK and Ireland.
Down Syndrome Heart Group	This is a charity offering support and information relating to heart conditions associated with Down Syndrome.
Down Syndrome Education International (DSE)	DSE works to improve early intervention and education for children with Down syndrome everywhere. We support scientific research and provide evidence-based resources and services to help over 100,000 parents and professionals in over 170 countries each year.
Mosaic Down Syndrome UK	A group for parents of children and adults with Mosaic Down Syndrome.
NHS Choices - Down Syndrome	NHS website giving Down Syndrome information.
Markfield Community Centre	Markfield Community Centre in Haringey promotes the dignity, choice, independence and community of disabled people and their families.
Haringey Disabled Children's Team	Haringey Disabled Children's Team provides advice and assistance to families with children who have severe and complex disabilities.
Haringey Council - Children and Young People with Special Educational Needs and Disabilities	This information is for parents/carers of children with special educational needs and/or disabilities. It explains the support we offer in Haringey for those children and young people. This is called our �local offer�.
Haringey Council - Learning Disabilities	Haringey Learning Disabilities Partnership provides health and social care services for adults and children with learning disabilities, and their carers. The Partnership aims to support people with learning disabilities to achieve independence and life-time well being.
Disability Living Allowance (DLA) for children	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.

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