Last weekend Mr C and I went to the Somerville Foundation‘s annual conference. This year, it was in Glasgow, a city I hadn’t been to since I went there for a cousin’s wedding in about 2000 (?). The conference was held at the Grand Central Hotel, which is part of the Glasgow Central Station building. There is a lovely champagne bar from which you can look over into the station and see all the people milling about on the concourse below. We didn’t have champagne, by the way, we just walked through the bar! Mr C and I had been very disorganised and not managed to book in time to take advantage of the discount on the hotel, so we stayed in a hotel round the corner, which was fine apart from the noise of men shouting and singing in the middle of the night!
As usual, it was good to see old faces from previous conferences, and catch up on news. We always say we should meet up between conferences, but we never seem to get round to this! There was the usual exchange of heart-related news, and questions about people’s different heart conditions. It’s a funny situation to be in, in a way, where people with heart conditions are the majority instead of the minority. Mr C refers to the Somerville Foundation (SF) Conference as me going to see my own kind! Hmm. But on a more serious note, one of the reasons I like going to the SF Conference is because I don’t feel so alone with my worries. I do have people to talk to in my ‘general’ life, but I sometimes find that talking to people who have gone through similar things to me is more helpful, particularly in that I know I’m not alone in feeling (either physically or mentally) the way I do. I know it sounds obvious, but, bizarrely, it wasn’t really obvious to me for quite lot of my life. It’s only relatively recently, since I had the surgery in 2008, that I’ve realised how valuable talking to, or just being in the company of, fellow people with congenital heart disease* can be.
A lot of this year’s conference was taken up with talking about the restructuring of NHS services for children and adults with congenital heart disease (CHD), both here in England and in Scotland. At the moment the Safe and Sustainable review is in progress, deciding which hospitals should continue to perform children’s heart surgery, and which surgical units will close. This may (or may not) have some effect on service provision for adults with congenital heart disease. As I understand it, the worry for some people is that if hospitals stop doing children’s heart surgeries they may also stop doing adult heart surgeries, and then the corresponding outpatients and other ACHD services will also close and move elsewhere, and ‘elsewhere’ may not be somewhere patients can get to or want to go to.
As well as the ‘Safe and Sustainable’ review, a further process; reviewing and seeking to implement standards of care for adults with congenital heart defects, is currently underway. Representatives from this NHS came to the conference to ask us for our views on how they should go about seeking our views (!), and about who we think they need to involve in the process, informed by our own experiences of using the NHS. Sadly, these experiences are often somewhat negative, mainly because medical professionals who are not specialist ACHD personnel don’t really understand the needs of people with CHDs. This is not massively surprising, but it can (obviously) present problems for people with heart defects if they, e.g. turn up in A & E – which is why lots of us where Medic Alert bracelets and such like. Unfortunately, even some CHD specialists can be less than helpful in not listening to the person who actually has the heart condition, and lots of people seem to experience frustration until the doctor finally realises they were right all along and gives them the correct treatment! Sigh. Having said that, I think it is safe to say that as people with CHDs we are all extremely grateful for the NHS and its personnel. Not least because most of us owe our lives to NHS doctors, surgeons and nurses.
Although all this was interesting, some of us were slightly disappointed that there was no ‘medical’ aspect to the day. In previous years we have had consultants speaking about different medical procedures or an aspect of the history of treatment, or similar, which I always find very interesting. Maybe they’ll bring back this element next year.
As usual, a big feature of the conference was the lovely food, particularly at the Annual Dinner in the evening. The irony of serving lots of probably quite unhealthy food at a conference for people with heart defects never escapes observation! However, we decided that as we generally try to eat healthily it was OK to eat nice puddings, pies, etc. when on holiday, as it were. I ate a scotch pie for the first time. It was quite tasty, but I think I still prefer a good Melton Mowbray pork pie. But then I would say that…
*I don’t know how to write this short-hand. Maybe ACHD-ers? (Adult Congenital Heart Disease-ers /Defect-ers? Maybe not.)