There can be many expenses involved when you are looking after a child with a single ventricle heart condition, for example with feeding, warm clothes for winter and frequent hospital trips and appointments.
We hope that this information will help to point you in the right direction of some of the sources of funding which may be available to help families. We can’t guarantee that you’ll be eligible for everything listed here, so please contact the relevant organisation directly to explain your circumstances and make sure it is worth your while to apply, and to make sure the information we have given is still correct as many of these things change frequently.
The majority of the information here refers to England, Wales, Scotland and Northern Ireland. In the instances where we are aware of a different situation, we have tried to make this clear.
When your child reaches the age of 16, they are entitled to claim certain benefits in their own name. However, it is very important that you seek proper advice about whether they should get benefits in their own right, or whether you will be better off as a family if you continue to claim on their behalf if they are still in full-time education.
If you would like to discuss benefits and entitlements in general, you can contact Little Hearts Matter, your congenital cardiac specialist nurse or hospital social worker. Other general sources of information are your local Citizens Advice, social services, your child’s community nurse, a specialist health visitor or the nurses and health care assistants on hospital wards. It can be worth chatting to these people to find out whether they have any ideas or experience.
This information is correct to the best of our knowledge at the time of going to press, but is not a guarantee of an individual family’s eligibility for funding. To check your eligibility, please contact the organisations directly.