About Somerville Heart Foundation

Somerville Heart Foundation is the only UK-wide charity supporting adults and young people as they transfer to adult services, with all forms of Adult Congenital Heart Disease (ACHD).

The charity was set up in 1993 by Professor Jane Somerville who recognised the need for a charity for this new and rapidly growing set of survivors.

It is estimated there are over 250,000 people in the UK who have survived into adulthood, with now more adults having the condition than children as around 90% now survive as opposed to 15% during the 1950s and 1960s.

We are here to provide many of their non-medical and psychological needs so they can lead as fulfilled lives as possible, as well as campaigning to make sure the health services are there for their physical needs.

We are reliant on Donations to carry on doing this and need people to help us by Getting Involved.

Our beliefs…

At Somerville Heart Foundation, we believe that every adult born with a congenital or inherited heart condition in the UK should have:

  • Access to all necessary healthcare, delivered by appropriate specialists, quickly and easily.
  • This includes access to mental health and psychological support where needed.
  • An understanding of their condition to confidently make lifestyle choices and be joint decision-makers in their healthcare if they so desire.
  • Have their voice heard in decisions made about healthcare delivery that affects their care. “Nothing about us, without us.”
  • Knowledge about living with their condition, from driving, pregnancy, menopause, exercise etc.
  • The confidence to talk about their condition to family, friends and in the workplace when required.
  • Be recognised as someone with a long-term condition in the same manner as diseases such as diabetes.
  • The ability to live their best life.

We aim to:

  • Provide accurate information and advice to allow those with ACHD to take informed decisions, become expert patients, grasp opportunities, and consider lifestyle choices
  • Combat the isolation felt by so many along with helping allay their anxieties and fears as well as those of their families
  • Help those with ACHD to share experiences and thoughts of others in the same position as them and to enable the provision of mutual support.
  • Fight discrimination and ignorance through campaigning, educating, and promoting the rights and needs of those with ACHD

But we can’t do it alone. In order to achieve this, we need your help. By making a Donations or Getting Involved we can carry on this work and do even more.

Support for our Community

Our community is all those who are affected by or work in the realm of Adult Congenital Disease (ACHD). Those that have ACHD, their family and friends, the clinicians that care for them and those that are involved in the provision of the care services.

We try to work closely with the clinicians and those involved in the provision of the care services, but much of our work is focused on those with ACHD, their families and friends. In that way we are not only providing support to them but also to the clinicians as they have access to support materials through us to enable them to support those they see better.

View our support services page.

Our History

We have been supporting patients since 1993

  • Started with the name the Grown Up Congenital Heart Patients Association
  • Founded by Dr Jane Somerville (now Professor Jane Somerville)
  • Initial funding obtained from the British Heart Foundation in 1993
  • Registered as a charity in 1994 to enable congenital heart patients to help and support each other
  • Renamed The Somerville Foundation in 2012
  • Renamed to Somerville Heart Foundation in 2022.

Our Impact

  • The UK’s Only charity dedicated to supporting congenital heart patients. Congenital heart defects (CHD) affects thousands of adults living in the UK today. Fortunately, thanks to our research and support, CHD patients are not only surviving into adulthood, they are also thriving. We provide the ACHD community with the following services:
    • A national support network & good relationships with Specialists Centres and medical professionals
    • A wealth of help and advice for members
    • Financial support, such as grants through our hardship and covid funds for coaguchek machines, etc
    • Campaigning for better services & support
    • Webinars, meet ups & conferences
    • Closed social network groups for peer to peer support

    Here are just some of the ways we’re helping to change lives for the better

    • Launched a patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress
    • Published a range of leaflets for CHD patients on topics such as lifestyle, travel insurance, and pregnancy which are distributed to the Specialist Centres
    • Produced a pocket-sized ‘personal health passport’ Useful for keeping all the information you need to know about your condition in one place
    • Publish a quarterly newsletter, written for, and by, adult CHD patients. Subscribers include members, supporters and medical, healthcare and social care professionals.
    • Developed and regularly update an online resource centre (this website!) and online forums where congenital heart patients can connect with each other
    • Established a benevolent fund for CHD patients in financial hardship
    • Organise events for young people and adults. Providing CHD patients with the opportunity to meet and gain support from each other
    • Hold annual conferences, regional patient information days and workshops throughout the UK
    • Contribute to adult CHD nurse training days and taken part in various study days and conferences for medical and health professionals, including the bi-annual ACHD Symposiums and annual BCCA conferences
    • Organising various social, publicity and fundraising events. These include marathon (and half) runs, annual sponsored walks including our own February Footsteps, cycle races,  music events, cake sales,  and plant stalls.