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Health and Wellbeing

The following sections inform parents, carers, individuals who have Down’s syndrome and practitioners about health care and staying healthy for people of all ages.

Information & Resources About Health Issues

The following pages give up-to-date information and resources about health conditions that are more common in people who have Down’s syndrome. It is good to know about these and their management, should they occur.

The Heart

Infections & Immunisations

Leukaemia

Epilepsy

Gastrointestinal & Diabetes

Thyroid

Sleep

Eyes

Ears, Nose, Throat & Teeth

Bones & Muscles

Sexual Health

Emotional Wellbeing

Depression & bereavement

Ageing & Dementia

Equal healthcare and reasonable adjustments

People who have Down’s syndrome should expect the same quality of healthcare from the NHS as anyone in the population. If a person who has Down’s syndrome and/or their supporter visits a health professional with their worries or concerns, they should always expect what they have to say taken seriously.

The NHS has a legal duty to make reasonable adjustments to their services to make sure people who have disabilities face as few barriers to getting good healthcare as possible. For people with learning disabilities reasonable adjustments may include longer appointments, information in easy read and support around consenting to treatment. There are some examples of reasonable adjustments in our resource about having a blood test.

Personal Child Health Record (PCHR) insert

Some health conditions are more common in people who have Down’s syndrome. There are certain health checks (e.g. thyroid, hearing and sight) which need to be done regularly. The Down Syndrome Medical Interest Group UK & Ireland has put together a list of recommended health checks for people who have Down’s syndrome (from birth until adulthood). The list is part of the PCHR insert for babies and children who have Down’s syndrome. The insert can be downloaded here.

Immunisation

Children who have Down syndrome may be particularly susceptible to infections and it is very important they have the same immunisations as everyone else (see immunisation section in the PCHR insert). For some children, particularly those with heart problems, additional immunisations may be recommended, for instance to protect against seasonal flu and some respiratory infections. You can discuss this with your GP, Paediatrician, Health Visitor or Practice Nurse. There is further information about infection and immunisation here.

Annual Health Checks

From age 14 years everyone who has Down’s syndrome is entitled to a free Annual Health Check (AHC) with their GP. There is information about AHCs here:

National Health Screening Programmes

In addition to the recommended health checks in the PCHR insert, people who have Down’s syndrome should be offered the chance to take part in all national health screening programmes (including cervical and breast screening).

Care pathways in health

Care Pathways can be helpful to both families and professionals alike. They are a way of setting out a process of best practice to be followed in the treatment of a patient with a particular condition or with particular needs.

DSA would like to see a standardised style of local Down’s syndrome pathway that describes a clear route from birth and throughout the lifespan of how care should be delivered, what is available and how to find/contact the relevant service. We believe it is imperative that any pathway should include a service/ contact to advocate for ethnic minority families.

Early support for new parents and information about early intervention services and therapies (including physiotherapy, occupational therapy, speech and language therapy) should be clearly signposted in a pathway.

Examples of Down’s syndrome specific health pathways, not all combined, comprehensive or lifelong, are listed on the UK and Ireland Down Syndrome Medical Interest Group website

GP Learning Disability Register (LDR)

Everyone who has Down’s Syndrome should be registered on their GP practice (LDR). You can join the register at any age. If the GP practice knows a person has additional needs they can put reasonable adjustments in place to make sure they get the right healthcare when they need it. Registration is not automatic so it is a good idea to ask the receptionist at the GP practice to check if the person is on the LDR. If the person is not on the LDR, the receptionist will ask about their needs. This information will be put on the person’s Summary Care Record (SCR) so all health professionals at the practice know about their needs and how best to support them.

If the person is aged 16 years or older and they have capacity, they must give their consent:

  • for information about their support needs to be added to their SCR
  • to which information can be shared and with whom

There is information about making everyday health, financial and welfare decisions post here (insert link).

The LDR is NOT the same as the Disability Register held by the Local Authority (Social Services)

Further Info & Advice

If you have any questions about health issues, you can call DSA’s Helpline (Tel: 0333 1212 300) or email using info@downs-syndrome.org.uk. If an information officer is unable to answer your question, they can make a referral to the medical adviser at the UK Down Syndrome Medical Interest Group (DSMIG).

Please note DSMIG can provide general advice about health issues but they are not able to comment on individual test results. DSMIG are happy to take enquiries from health professionals but they will not take direct from enquiries from families or supporters.

Staying Healthy & Eating Well

Being active and eating well is an important part of being healthy. We have developed the following resources to help.

The DSA is not in a position to recommend Targeted Nutritional Therapy:

DSEngage

Fun and engaging activities to do online in the comfort of your own home!

There are regular sessions everyday of the week, alongside seasonal specials and downloadable actitvities you can do anytime.

DSActive

Take a look at our DSActive programme – this is a national programme providing opportunities for people who have Down’s syndrome to lead healthy and active lives by taking part in a wide variety of sporting activities.