Islington Community Paediatrics: Pathway for Down's Syndrome

Email for referrals: whh-tr.islchildrensreferrals@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 who have a diagnosis of Down Syndrome, who have an Islington GP or attend a school in Islington.

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

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

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 will be requested if there are any gaps identified in the information provided. From the information available, referrals to therapy services may be generated, e.g. audiology and ophthalmology for hearing and vision monitoring. All children in this care pathway will come under the Islington Additional Needs Disability Services (IANDS) for provision of therapy input as needed (occupational therapy, physiotherapy, speech and language therapy, and dietician). In keeping with national standards, children are offered their 1st appointment at 6 months of age.
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 Appointments	Again your child will be seen by a paediatrician who will go through the following: Check general development Check growth and plot onto a gender appropriate Down Syndrome growth chart Arrange standard blood tests, e.g. thyroid function tests (this should be done every two years or more frequently if there were concerns), and full blood count, ferritin, coeliac screen as indicated Refer to Ophthalmologist at 18-24 months and check that they are seen 2 yearly there after If your child goes to a special school other than Sam Rhodes they will be seen by the paediatrician in their school. If your child is in a mainstream school or Sm Rhodes they will remain with the paediatrician at the Northern Health Centre for follow up. Your child will continue to be followed until they transfer to adult services.
Transition to Adult Services	Preparation for and transition into adult services is a multidisciplinary process involving Education, Social Care and Health. 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.

Associated Documents

Additional Needs and Disability Service (Islington) Referral Form

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's 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.
Centre 404	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, form filling, and access to social groups and other local networks.
Islington Disabled Children's Team	The summaries the LBI 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.
Islington 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�.
Children with Complex Needs	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).
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 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