Help us make a change to Disability Living Allowance for children with heart disease.

Why are so many heart children turned down for DLA despite their disabilities? We think it’s partly because heart disease is not given a place in the guidance used by the people who look at claims.

On Tuesday 29th November national children’s heart and adult congenital heart charities are holding a meeting in Parliament to obtain MPs’ support in getting children’s heart disease recognised in the Disability Living Allowance Assessor pack.

We need your help to get as many MPs to attend the meeting as possible.

Please could you write to your MP and ask him or her to represent you at the meeting. If you need to find your politician’s name and address follow this link

Here is an example of the kind of letter that you might send or email to your MP. All you need to add is information about your own child, their needs and any problems you have had claiming DLA. This is your chance to help us make a change.


Sample letter


Dear (insert name of MP)

Children’s Heart Disability Discrimination.

Introduce yourself and your story- eg My son was born with a heart condition which has needed three lots of open heart surgery.  His life has been saved and we try to treat him like any other seven-year old.  But he isn’t – he struggles to keep up with other boys, and uses a wheelchair for even short distances. He is on anticoagulation – a medicine which means he bruises and bleeds easily which prevents him from joining in with his friends and living as normal a life as possible.  To prevent a build up of fluid in his body, he needs diuretics and these cause frequent urgent visits to the toilet.  Like many heart children he also tends to get severe leg pain at night, interfering with his, and our, sleep.

Our claim for DLA, to cover the many costs that arise as a result of his heart condition, was turned down.

Imagine then our horror in discovering that heart disease is not even covered in the DWP’s Children’s Disability Assessors Guide! Imagine the frustration of having to make repeated applications and appeals for such an important allowance because assessors have no idea or information about the effects of the conditions that our children struggle with every day. Imagine how dismissed we feel, and how discriminated against families like ours are.

Please will you attend and represent us at the forthcoming Awareness Event, hosted by Paula Sherriff MP, on 29 November at 3.30pm in Committee Room 12 to hear why this support is so important for young people like (insert your child’s name here) who will be living with a congenital heart condition for the rest of their lives.

You will have the opportunity to support the call for inclusion; take part in a photo opportunity and Twitter campaign and most importantly, support the many children and adults in your constituency with a largely unseen and unrecognised disability.

If you would like to attend, or would like any further information, please contact Suzie Hutchinson on or ring 0121 455 8982.

Yours sincerely

(insert your name)