The Somerville Foundation is a unique name. Tell us more about the background of it!
Jane Somerville: Originally the charity’s name was GUCH (grown up congenital hearts (patient association), but the trustees wanted to honour me as the founder of the charity – hence the name. Personally I think its the patients who matter and need help. And my name is not as important
The Somerville Foundation is the UK’s only charity supporting adults living with CHD. What was the reason to focus on adults?
Jane Somerville: Yes, it is the only charity. The British Heart foundation does offer support but it’s not just about young people. Adults have special problems “until 70”, which change as decades pass, with and without congenital heart diseases, which impact specially with age.
What is the biggest difference in providing support for adults than children?
Jane Somerville: There are more adults with CHD in the country now than children. I guess they are less attractive to help than the blue baby or a child whose life needs to be saved by an operation or other interventions. Now they survive, they should not be considered as totally cured of medical needs and specialist care and reoperations.
Their problems are different from children’s, the operations more complex and demanding. Valves are calcified, artificial or native medical problems from rhythm upsets, infections, heart failure, increasing disability their hearts do not behave as other adult hearts seen by adult cardiology. They need protection from errors in diagnosis and management – all too frequent. The most challenging are those with named operations – named after surgeon. Never poor s offering patient.
Then there are the issues of lifestyle and life needs – pregnancy, employment education insurance hobbies. These are no problems for children but adults need informed advice, and often can’t find it. The Somerville Foundation provides this and is a particular opportunity to know there are other like you. We also assist with emotional and mental problems. Medical care has been organised nationally, but the general practitioners fail to realise the needs and dangers for GUCHs.
You are hosting regular events for people living with CHD. What has been the most memorable moment of your series of events?
Nicola Graves (Development Director): For me, it would have to be last year’s conference for the pure and simple reason that we saw the start of something incredible that day. Patients started standing up in their numbers and telling us ‘This is what you need to do and I will help you do it’. It was very powerful and marked the beginning of a new era for us as a charity. We are now heading in the direction I feel we need to go in – being properly patient driven and that’s pretty amazing.
There are quite a few people who were born with a congenital heart disease in the 1980s, who are now in their early 30s. They are the first patients to reach adulthood despite having experienced severe problems with their heart! What kind of support does The Somerville Foundation offer for this pioneering group?
Nicola Graves: We have an Over 30’s Meet Up Group and will soon be appointing a Thirtysomethings Ambassador to champion the needs, wishes and concerns of this age group. We also hope to work in partnership with other organisations who support this key group to offer a joined-up approach. We would love to hear your thoughts and suggestions please.
Have you noticed any similarities among people reaching out to you, in regards to what most of them need support with?
Nicola Graves: Absolutely. We get a lot of requests for advice on travel insurance and employment law. Recently I’ve noticed a very high number of patients are reaching put for mental health support and I’m so pleased to see this. I think the increase is due to a willingness and ability to speak out about the impact CHD has on your mental health, rather than an increase in patients suffering poor mental health. High numbers have been struggling for a long time and it’s so encouraging that they know they can talk to us about it and we have mental health support services in place to help them. For this reason, we have decided to focus our annual conference this year on supporting the mental health of people with CHD. More details soon.
The Somerville Foundation will be on BBC radio in spring. Is there anything in particular you want to inform listeners about?
Nicola Graves: Yes, we’re just waiting for the date to be confirmed but we do know it will be before the end of May. This is an incredible opportunity for us. We want to listeners to go away with 3 key messages and a call to action:
- CHD is the most common birth defect in the world and there are approximately 250,000 adults living with the condition in the UK.
- People with CHD need support throughout their lives and that is why we exist – to support them every step of the way.
- CHD patients have a very high prevalence to poor mental health so we have created specialist support programmes to help.
Call to action: We can’t provide these vital services without your help so please donate today.
How can people affected by CHD get involved with and support the Somerville Foundation?
- Join our closed Facebook group to ‘meet’ others and form peer support networks
- Attend a meet-up.
- Write a blog or article for our website. Contact firstname.lastname@example.org
- Submit an article for our magazine. Contact email@example.com
- We have roles you can do from home or out and about. Let us know what interest you most. We’re currently looking for volunteers to help at Ipswich Music Day on 7th July, the UK’s largest free music festival, amongst other opportunities.
- Come to our conference on Saturday 5th Oct in Liverpool.
- Current concerns include unfair PiP decisions and prescription charges for ACHD patients.
- Listen to our BBC Radio 4 appeal coming up in the spring, donate and get everyone you know to listen too.
- Buy merchandise, including our ‘Wear Your Heart on your Sleeve’ bracelets in the online shop
- Share our posts on social media
- Take part in an organised activity for us such as Nightrider or Royal Parks Half Marathon
- Create your own fundraiser. It doesn’t have to be something exercise related. Sponsored silences, head shaves and bake sales are great ways to help raise funds.
- Organise an event for us. It doesn’t have to be huge – turn a barbecue or picnic with friends into a fundraiser
- Take part in ‘Armchair fundraising’ by using the following sites and selecting The Somerville Foundation as your charity of choice: Give as You Live; Charitable Bookings; Don’t Send Me A Card.com; Amazon Smile; Ebay
- Share your networks with us – do you work for a company that might be interested in working in partnership with us? Is your employer looking for team building opportunities? Do they offer match funding? All of these things help enormously. Please put them in touch with our Development Director, Nicola Graves at Nicola@thesf.org.uk
- Play our lottery
Spoiler alert, On 8 and 9 June The Somerville Foundation is hosting the London Night Rider event and I am planning to take over their instagram for the event. Come and join me on this fun ride. It’ll be a chance to see the city and meet fellow CHD patients!