Managing finance and available benefits

Man with calculator counting money and making notes at home

Looking after your finances can feel overwhelming, particularly when you have your child's heart condition and overall health to think about.

Financial issues while in hospital

There are many reasons why you may experience some financial strains while your child is in hospital:

  • the hospital may be a long way from home
  • you may need to stay longer than planned
  • you may have to take time off work
  • extra costs such as travel expenses
  • buying meals while in hospital 

All this can add up, and for some people this can be difficult to cope with.

If at any point you are worried about your finances, speak to the hospital social worker or cardiac liaison nurse.  They can advise you on any benefits and expenses you may be able to claim.

You can also talk to the Citizens Advice Bureau.

The organisation Working Families can give advice about your rights as an employee if you need to take time off work to be with your child. Call them on 0300 012 0312

Low-income benefits

Benefits for people on a low income include:

  • Income Support
  • housing and council tax benefits
  • Tax Credits

If your income goes below a certain amount, you may be entitled to claim benefits. However, you will need to meet certain criteria first.

The criteria vary from one benefit to another, so it’s best to get specialist advice from a hospital social worker, Citizens Advice Bureau or Jobcentre Plus.

Disability benefits

It can be difficult to get Disability Living Allowance for a child. You’ll need to show they need more attention or supervision than other children of the same age.

Most children with congenital heart disease don’t qualify for a Disability Living Allowance.

However, there is a mobility and care component to this benefit. This means if your child needs extra care because of their condition, you may be able to apply. Ask your specialist nurse or social worker for advice.

For more information and to apply, visit Disability Living Allowance or call 0345 712 3456.

You can also get a form from your GP or your local Jobcentre Plus.

Carer’s Allowance

You may be entitled to Carer’s Allowance if your child is awarded the middle or higher component of Disability Living Allowance. However, you will only get Carer’s Allowance if your earnings are below a certain limit.

Fares to hospital

If you receive Income Support, have a Tax Credit exemption card, or are assessed as being on a low income, you are entitled to get reimbursed for your fares to your child’s hospital appointments and inpatient treatments.

If you think you might qualify because of your income, you must complete a form called HC1. To get the HC1 form, call 0845 850 1166.

This form is usually also available from Jobcentre Plus offices and NHS hospitals.

Fares for visiting your child in hospital

If you receive Income Support, income-based Jobseeker’s Allowance, or Pension Credit, you may be able to get help towards the cost of fares for hospital visiting from the Social Fund.

You can apply for a Community Care Grant on form SF300. This is available from your local Jobcentre Plus office or from the Department for Work and Pensions.

Be aware that these payments are not given in all cases.

The benefits system is very complex, so it is important to get specialist advice on what you may be entitled to, from the hospital social worker or the Citizens Advice Bureau.