Last Saturday (12th October) Mr C and I attended The Somerville Foundation Annual Conference, which was held in London this year, alongside the youth conference hosted by the Children’s Heart Federation. It was a convenient location for us and, as usual, was held at a rather nice hotel that provided us with lovely food. The irony of having talks on healthy living followed by masses of not-very-healthy food never escapes us. Although, to be fair, there were healthy options if you wanted them.
The day followed the usual pattern of talks, break, talks, lunch for the morning, but this year we also had talks in the afternoon, whereas in previous years we’ve had workshops. I (and other people I spoke to) actually preferred to have more talks, especially as they were so interesting this year. There was a “Wellbeing Room” and a quiet room, which were open all day so you could drop in as and when/if you wanted a break from the main events.
I won’t go into details about all the talks – there was a lot of information to take in, but here is a brief summary of the what we learned about:
- What is a Grown Up Congenital Heart? This title didn’t really make sense, but the talk itself was really interesting. Dr Shay Cullen from the Heart Hospital talked about how the heart develops and about the history of heart surgery and treatment for various congenital heart defects. It was noteworthy that there are now more adults with congenital heart defects (CHDs) than children with with CHDs – despite this there are about 157 (can’t remember this figure exactly) paediatric heart specialists and 25 adult congenital heart specialists.
- Grown Up Congenital Heart/Adult Congenital Heart Disease Treatments – where are we in 2013? was a talk by Professor Michael Gatzoulis from the Royal Brompton Hospital. He talked about the advances in medical equipment and care, but also emphasised the need to listen to those who actually have CHDs in order to assess how best to care for them. He also spoke briefly about the now-defunct “Safe and Sustainable” review of children’s cardiac care in England and Wales, emphasising that we, as patients, need to keep up with government developments relating to our services, so that we are able to make informed decisions about our own care.
- EPS and Ablation in Complex Congenital Heart Disease. Dr Sabine Ernst, lead for electrophysiology research at the Royal Brompton Hospital, gave a very enthusiastic talk about the latest in treating arrythmia using electrophysiology (EP). EP is used to identify the origin of the arrythmia and then ablating the relevant part of the heart muscle so that it can no longer conduct ‘incorrect’ electrical impulses that cause arrythmia. The new technology uses magnets to guide the catheter into the heart, and because it uses leads that are bendy, this negates the need to puncture through parts of the heart in order to access the part that needs treating. It was surprisingly exciting to see a video of the machine in action!
- Aortopathy for the Grown Up Congenital Heart. This talk was given by Dr Bejal Pandya of the Heart Hospital, and was about problems with the aorta, including aortic aneurysm and coarctation (narrowing) of the aorta, the latter of which is a common form of congenital heart disease, and also something that can be caused by some types of treatment for other forms of congenital heart disease.
- Exercise and How it Affects People with CHDs. Dr Kostas Dimopoulos gave an entertaining but thought-provoking talk about exercise, including information about what types of exercise are suitable for people with particular types of CHD. Contrary to some beliefs about people with CHD, many, if not most, of us are able to, and should, exercise regularly. Unfortunately, medical practitioners used to tell people with CHDs that they shouldn’t exercise, and this belief still prevails in some quarters. I know I need to exercise more! Fortunately, there are ways to exercise that don’t involve going to the gym, including walking, gardening and housework!
- Psychological Care and Assessment of ACHD Patients. Dr Natali Chung and Dr Jane Hutton, and Ms Hajar Habibi from St Thomas’ Hospital and King’s College London talked about their project to improve psychological care and assessment of adults with CHDs. This involves the person completing a short questionnaire at their out-patient’s appointment, then the data collected is passed straight to the consultant so any issues can be discussed and followed up if necessary. They have also produced some self-help leaflets that will be available on the IMPARTS website soon. I found this talk particularly interesting, as psychological care of people with CHDs has long been something I’ve wished more medical professionals would focus on, so I hope that the kind of programme now introduced at St Thomas’ will be rolled out to all other specialist ACHD centres. Dr Liza Morton has also done a lot of work in this area – some of her articles are available on the Somerville Foundation website, as is other information and advice relating to mental and emotional health.
- Interventions and Implantations. Dr Anselm Uebing gave a talk about cardiac catheterisation, which included the slightly disturbing fact that the first doctor to perform a cardiac catheterisation, Werner Forssmann, did it on himself! In the present day, catheters are used to carry out procedures that would previously have required open heart surgery. However, while less invasive, these procedures are not necessarily safer than open heart surgery.
- Healthy Ageing/The Next Phase in CHD Management, by Professor John Deanfield of the Heart Hospital. This was a rather sobering, although at times amusing, talk about the perils of ageing and in particular the affects of an unhealthy diet and lifestyle on our arteries. Like other people with a CHD, I’d (perhaps oddly) thought I might be immune to such things as blocked arteries due to cholesterol, etc., but this was mainly because I thought it would be unfair for me to have that as well as a CHD, which, I admit, it not logical at all. Anyway, the harsh reality is that we are at just as much risk as the general population, of course our existing heart conditions will not make things any better! It turns out that arteries can start furring up from a fairly young age – around 30 – so it is important that we start changing our eating and lifestyle habits as soon as possible. The good news is that deterioration is reversible if we start to make changes now. This talk resulted in Mr C and I agreeing to no more take-away pizza or fish and chips or beer (in Mr C’s case), which is a bit sad but for the best. Also, I must walk up the stairs more at work.
The final two sessions were an update on fundraising, which was encouraging, and a question and answer session where we could ask questions of an expert panel made up of Anne Crump (The Somerville Foundation’s Mental Health Worker), Professor Deanfield, and Dr Uebing.
All the sessions were interesting, but, as usual, my favourite part of the conference was being able to meet with other people who have CHDs – many of whom we’ve met before – it’s always good to catch up. We did this during the day at various times, and also over the annual dinner which was held in the evening. Unfortunately, Some of our friends hadn’t had a good year since we last saw them. If I’m feeling well, sometimes I forget I have a pacemaker, and I don’t think about my heart condition all the time. Meeting friends who haven’t been or aren’t well, and knowing that there are people who are no longer with us due to their heart conditions, makes me realise that I’m lucky to have these times when I’m alright. I know it won’t last. Inevitably, I’ll have to have my valve replaced again, and my pacemaker changed, and I don’t know what else. I don’t know how I’ll be in 3 months or 6 months or how I’m going to cope with carrying the baby when it gets bigger (before and after it’s born!)…but I probably need to write another post about that!
For now, I’m just taking a day at a time and trying not to worry too much about the future, and, as ever, I’m grateful for the help and support I have from my friends with CHDs, as well as for all the technological and medical advances that we’re fortunate enough to be able to access in this country.
Thanks to Mr C for his thorough notes, which have been very helpful in writing this post!
P.S. Forgot to mention, Jane Somerville herself popped in to the conference which was quite exciting. I’d never seen her in real life before. A formidable woman! I must listen to her Desert Island Discs!