It is always okay to ask for help.

However much you might want to look after someone you love, caring responsibilities can be tiring, stressful and often take an emotional toll.  So, when you care for someone else, it is essential to look after yourself as well.

Today, an estimated one in eight UK adults are carers. With many not formally recognised or supported. So you are not alone.

Whether you care for someone born with a heart condition, or are someone born with a heart condition that cares for someone else, getting the help you need is crucial.

If you would like to talk about how you are managing as a carer, or have any questions about support please contact us today.

Carer Support

Carers UK is an organisation that has a wealth of information on all aspects of caring including for people.

  • Information on the different aspects of caring
  • Practical advice for in the home such as aids and adaptations
  • Help with care and respite
  • Help with money and information on benefits such as Carers Allowance, Disability Living Allowance and Attendance Allowance
  • Contact details for local carer groups that meet and offer practical advice and support in your area
  • Online support forum and advice line

Join our carer community!

As well as doing everything we can to make lives better for adults living with a congenital heart condition, we’re also here to talk about day-to-day stuff.

Other ways to get help.

Here are some other organisations and groups that offer advice and support to carers.

  • Mind the Gap Northern Ireland. Assists 1,500 carers (aged 60+) in Northern Ireland (through existing service provision channels, and by identifying gaps in services) to have an improved quality of life through better access to advice on benefits and services
  • Carers Trust. Carers Trust believes in a world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives
  • Disabled Living Foundation (DLF). DLF is a national charity providing impartial advice, information and training on independent living
  • Contact a Family. Information and advice on any aspect of caring for a disabled child.

Carer stories

How can you help us?


With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.


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