The Somerville Foundation

[Amysmeats]

Hi

Just wondering how many U.K. people on here know of or follow the Somerville foundation?

They are the adult CHD charity in the U.K.

they are having their annual conference in October where they will be looking for patient ambassadors.

They don’t have a huge number of followers so I just wondered if people know about them?

Thanks

Xx

[Midgeymoo17]

As a congenital heart patient myself I am very aware of their presence- however I avoid them like the plague. When I was sixteen I was told about them by my clinical nurse specialist, who also poignantly explained they got a lot of patients who often felt worse after engaging with them. I did not want to just accept judgement someone else's judgement so I decided to look for myself and to be honest I did not agree with the culture fostered by there mission statement (although I believe in the last couple of years the wording of this has changed a little) and through their advice leaflets.

In the current mission statement it states: "enabling them to take control of their lives and manage their own heart condition" yet by enlarge every piece of advice to to listen to your cardiologist/ consult your cardiologist. At no point does their literature ever encourage the patient to reject the advice of their doctor. At no point does it ever encourage the patient to think is your cardiologist the best person to ask advice of. Believe it or not, your GP is as good- and in many cases better. I personally find both these things extremely important part of taking control and respecting the autonomy of the patient in question. Sadly, I have seen also far too often treat the advice of there cardiologist as law because of advice like this. Your cardiologist is a specialist in your heart- not you. And you are more important. - It has improved a lot recently but it still falls short of ever saying you can say no to your cardiologist. Further to this they is no advice on how patients can check the approriacy of the clinical care they are receiving- such as accessing the NICE database of drug prescribing guidelines.

On a more personal note, I avoid CHD support groups in general because the narrow emphasis and poor diversity in patient population it represents. For some people this is a benefit, but I find it cultivates a culture that unwelcoming to people who do not fit the convenient little box of being a CHD patient (I have 11 congenital defects, only one of which is Fallots) . I personally find support groups that represent greater diversity in the conditions represented to be more congenially understanding of the challenges patients who are multidisciplinary face- and these are multiplied by the attitude that a cardiologist is god!!!!. But each to their own on this one.....