Congenital Heart Disease (CHD) & Disability Living Allowance (DLA) meeting at Parliament on 29 November 2016

Tuesday 29 November 2016 will bring together national children’s heart and adult congenital heart charities to 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.

The event will be hosted by: Paula Sherriff MP at 3.30pm in Committee Room 12.

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

  • CHF are pleased to be a part of this campaign and think it will be helpful for the DWP to include children’s heart disease in the Disability Living Allowance Assessor pack.
  • CHF also appreciate that there is a need to educate those who provide supporting information for a Disability Living Allowance (DLA) or Personal Independence Payment (PIP) claim so that they are clear on how the condition adversely affects functionality.

We urge you to write to your MP!

For further information, please contact Suzie Hutchinson via

Or you are welcome to call Suzie on Tel: 0121 455 8982

  • Here is an example of the kind of letter that you might send or email to your MP.

Please add information about your own child, their needs; how their CHD affects their functionality and any problems you have had claiming DLA.

This is your chance to help us make a change!

Draft Template Letter


Congenital Heart Disease & Disability Living Allowance

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 and how it affects our child’s functionality.
  • 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

Your name

Gift Aid