This site has been written and designed for healthcare professionals.
There is no intention to exclude other professionals, carers or parents,
but their needs may be more appropriately met by other
organisations. Whilst we hope that some of this information will also
be useful to parents and carers, we should stress that it is intended
to complement, and never replace, direct medical consultation.
Overview of the healthcare services and support currently available for people with Down's syndrome in the UK
The Down's Syndrome
Runs a medical advisory service for parents and carers with which we have
Provides excellent information and support about heart problems.
These and other organisations provide information about social, developmental,
educational and support issues, as well as medical information. The Other
Organisations page has a fuller list of relevant groups.
The following is information which we consider particularly 'parent-friendly'.
Some of it has been written specifically for parents and carers. Professionals
may find it useful to have these resources available.
Whilst we hope that this information will be useful to parents and carers,
we should stress that it is intended to complement, and never replace,
direct medical consultation.
Ageing and its consequences for people with Down's syndrome
Article written by Professor Tony Holland for the Down's Syndrome Association newsletter in July 1997
Website for The Alzheimer's Society which has a telephone helpline and produces a range of informative leaflets and other literature
Atlanto-axial instability among people with Down's syndrome: Notes for parents and carers
Text of Down's Syndrome Association Medical Series leaflet No 3. PDF
Patient information sheet provided by the Oxford Eye Hospital
British Gymnastics Atlanto-Axial Information Pack
Information sheet and official screening form for participation by persons with Down's Syndrome in gymnastics and trampolining
Table from the PCHR insert, adapted from Cunningham 1988, outlining the usual development of children with Down's syndrome
Depression in people with learning disability
Leaflet produced by the Royal College of Psychiatrists
Diabetes and Down's syndrome: Notes for parents and carers
Text of Down's Syndrome Association Medical Series leaflet No 5. PDF
Down Syndrome and Autistic Spectrum Disorder: A look at what we know
Paper written for the Down's Syndrome Asociation newsletter by George T Capone from the Kennedy Krieger institute. Baltimore
ENT clinic for children with Down's syndrome
Details of weekly NHS clinics in Machester for children with Down's syndrome
Eye problems in children with Down's syndrome: Notes for parents and carers
Text of Down's Syndrome Association Medical Series leaflet No 6. PDF
Eye tests in your own home
Information on the Outside Clinic's domiciliary eye-care service
Fingerprick thyroid screening test
Information about how to arrange this type of test
Gastrointestinal problems in children with Down's syndrome
Article written for parents by Dr Liz Marder for the Down's Syndrome Association newsletter
Growth charts for children with Down's syndrome
Information about the UK/Republic of Ireland cross sectional growth reference charts 2000
Healthcare services and support for people with Down’s syndrome in the UK
Information compiled by DSMIG about current provision and availability of services in the UK
Hearing problems in people with Down's syndrome: Notes for parents and carers
Text of Down's Syndrome Association Medical Series leaflet No 4. PDF
Quick reference sheet based on DSMIG clinical awareness note
Infective endocarditis prevention
Parent information notes from the John Radcliffe Hospital. Oxford
Lifestyle Healthcare Ltd
Website for Lifestyle Healthcare Ltd who produce a wide range of fresh baked gluten free foods with same-day nationwide home delivery
Nasal congestion. Action sheet
Practical advice written originally for parents but also useful for health care professionals
National Autistic Society
The highly informative website of the National Autistic Society
Nuk nasal decongester
Sales information about the nasal congester featured in the nasal congestion action sheet
DSMIG's special insert for babies born with Down's syndrome for the parent held personal child health record (PCHR) - The Red Book
Schedule of Health Checks
Suggested schedule of basic essential childhood health checks taken from the PCHR insert
Testing for Down's syndrome in pregnancy
"Screening tests for you and your baby" - booklet produced by the UK National Screening Committee (NSC).
The BAHA system: An option for treating hearing loss
Review article by Mr Patrick Sheehan, Consultant Paediatric otolaryngologist, about using bone anchored hearing aids (BAHA) for people with Down’s syndrome as an alternative to conventional hearing aids or grommets.
Thyroid disorder among people with Down's syndrome: Notes for parents and carers
Text of Down's Syndrome Association Medical Series leaflet No 1. PDF
Vision in children with Down’s syndrome
Article written by Dr Maggie Woodhouse based on the work of the Down’s Syndrome Vision Research Unit at the School of Optometry and Vision Sciences. Cardiff University.
Welcome to Holland
A refreshing insight into the experience of finding that your new baby has Down's syndrome.