How we can help
Our Information Officers are happy to talk to you about child and adult health issues. We can suggest resources which might be useful to you such as our Health Series of publications (hard copies of all of our publications are available on request by phone or email). We will refer any questions that we are unable to answer to the UK Down’s Syndrome Medical Interest Group (DSMIG). DSMIG is a network of healthcare professionals – mainly doctors – from the UK and Republic of Ireland whose aim is to share and disseminate information about the medical aspects of Down’s syndrome and to promote interest in the specialist management of the syndrome.
People with Down’s syndrome are individuals first and foremost.
It is important not to fall into the trap of labelling all symptoms of people with Down’s syndrome as “just part of Down’s syndrome”.
However, there are some common, but not universal, characteristics of people with Down’s syndrome. Understanding these characteristics will help you to understand, diagnose, and treat health issues in people with Down’s syndrome. This is where we can help you. We don’t claim to have all the answers but we can make your job easier by talking through the relevant issues.
Dr Elizabeth Herrievan and Dr Linda Dykes have produced an infographic for health professionals to help them remember certain facts when caring for children with Down’s syndrome. You can download this infographic here.
If you are working with women who are undergoing pre-natal testing, you may be interested in our Tell It Right Campaign. Has your service user got a copy of the NHS booklet Testing for Down’s syndrome in pregnancy? If your service user has received a pre-natal diagnosis and she has decided to continue with her pregnancy, please let her know about our booklet Looking Forward To Your Baby. Your service users can call our Helpline if they have any questions about living with Down’s syndrome.
If you are supporting new parents, please let them know that we can provide them with a new parent pack and that we are here to listen and to answer their questions. Did you know that there is a PCHR insert for babies born with Down’s syndrome? The insert contains growth and weight charts, information about child development and health problems. To obtain a copy please call our Helpline. If you would like to order multiple copies of the insert please contact Harlow Printing Ltd, Tel: 0191 455 4286, Email: firstname.lastname@example.org
All adults with Down’s syndrome should have an Annual Health Check with their GP.
We have produced information sheets about Adult Annual Health Checks, an Adult Health Book for people with Down’s syndrome and a section for GPs that contains up to date information about health conditions that are more common in people with Down’s syndrome.
You may also find our information sheet Eliciting a Case History useful. We have an informal email network for health professionals with an interest in the health of adults with Down’s syndrome. We send regular bulletins with updates of our health related work to the network and occasionally we ask the network for their advice. If you would like to join the Network, please email email@example.com