Healthcare services and support for people with Down’s syndrome in the UK

Dr Liz Marder (Chairman) and Dr Jennifer Dennis (Director of Information), DSMIG (UK)

In an ideal world all healthcare professionals would have a detailed knowledge and understanding of all medical conditions. Of course this is impossible and the NHS tries to meet the needs of people with a wide range of disorders, such as asthma and diabetes by encouraging the development of special clinics and by issuing good practice guidelines. We are working towards the same level of provision and understanding for those with Down’s syndrome.

DSMIG is a network of healthcare professionals – mainly paediatricians - whose aim is to ensure equitable provision of medical care for all those with Down’s syndrome in the UK and Ireland. We do this by disseminating to healthcare professionals information about best practice medical care through the publication of guidelines, through our medical meetings, through our information and advisory service and through our website at www.dsmig.org.uk. We collaborate with Down’s syndrome support organisations in the UK and Ireland and work closely with the DSA.

NHS clinics for children with Down’s syndrome

DSMIG members are involved with at least 15 dedicated specialist clinics for children with Down’s syndrome within NHS community child development services. These are in:

England & Wales

Derby
Hertfordshire
Kent
- Canterbury
- Gillingham
Leeds
London
- Islington
- Southwark

Manchester (ENT clinic)
Northampton
Nottingham
Oxford
Somerset (Taunton)
West Midlands (Walsall)

Scotland

Glasgow (ENT clinic)
Perth & Kinross

We are currently compiling a directory of these and other clinics in the UK to help parents access their services. We know that there are other similar clinics in the UK. If you are involved in a clinic which is not listed here please get in touch.

As well as dedicated clinics, many general child development clinics follow a Down’s syndrome specific care pathway. All these services are multidisciplinary and have input from a wide range of professionals such as physiotherapists and geneticists as well as integrating with local education and social services.

The "Red Book" (Personal Child Health Record (PCHR)) and UK Growth Charts

However we know that, as for all medical conditions, the overall situation is far from perfect and we are committed to helping empower parents to fight for appropriate care if they feel this is not being delivered locally. This is why we have produced the 20 page special Down’s syndrome insert for the Red Book (The parent held Personal Child Health Record (PCHR)) which is given to all babies at birth.

The PCHR special insert contains additional information for parents and professionals to help them maintain the health and well being of babies born with Down’s syndrome. In addition to general information there is information about expected developmental progress, possible health problems, advice about feeding and growth, UK Down’s specific growth charts and a suggested schedule of health checks. The insert is widely available and should reach all families free of charge very soon after their child is born through their midwife, health visitor or paediatrician.

How you can help us:

If you have a child under age 5 and have never received a copy of the insert please let us know on info@dsmig.org.uk as we are trying to find out where the distribution gaps lie.
Please also check that you have received the 2nd edition which was launched in 2000 and contains UK rather than US growth charts.
You can obtain a copy of the 2nd edition from the DSA (free of charge to members) or from sales@harlowprinting.co.uk.

Schedule of Health Checks

The Schedule of Health Checks recommended in the PCHR insert is based on evidence based surveillance guidelines developed by DSMIG (UK) and should be implemented by healthcare professionals in this country. If you believe this schedule is not being followed you should show this schedule to your doctor and ask for the recommended health checks to be done.

In the UK it is best if parents ask doctors and nurses to follow this UK schedule rather than any other as UK recommendations differ slightly from other countries (such as the US) and so trying to get another schedule implemented may cause confusion.

DfES Early Years Support

Continuing on the theme of parental empowerment we would also like to draw attention to the recent substantial DfES publication on Down’s syndrome as part of the Early Years Support Project which is to be distributed free of charge to all new parents. Downs Ed, the DSA, DSMIG (UK) and parents have all contributed to this. It is a very detailed publication which we feel gives a good reflection of services in the UK and is the sort of information parents need to help them in the often difficult task of accessing these services to the full.

You can a download a copy at www.earlysupport.org.uk.
If you are a family or professional in England you can also order a free print copy from DfES Publications, PO Box 5050, Sherwood Park, Annesley, Nottingham NG15 0DJ, quoting reference ESPP13.

Services for adults

What about services for adults? We know that in many areas this is a deep dark hole despite our best efforts. Currently we are trying to set up a DSMIG network group of healthcare professionals who are specifically interested in the provision of adult services. Meanwhile the DSA information service deals with medical queries throughout the age range and has links with a number of professionals from adult services including the DSMIG advice service for professionals. The DSMIG essential surveillance guidelines cover the entire age range and our website also includes information about some of the problems which may affect adults.

Dr Liz Marder (Chairman)
Dr Jennifer Dennis (Director of Information)

Published March 2006. Last updated March 2007.
A version of this article originally appeared in the Journal of the Down's Syndrome Association, Issue 110, Winter 2005/06.