In This Issue... OUR FUTURE IS PATIENT POWERED Red Socks Rule A fabulous fundraising event PAGE 17 Why me? A question I have asked myself most of my life. PAGE 6 issue 91 Winter 18 The Story of My Second Open Heart Surgery Andrew’s heart story PAGE 10 Introducing Patient Representive Lowri Smith PAGE 19 Supporting young people and adults born with a heart condition GUCH NEWS FORMERLY KNOWN AS THE GROWN UP CONGENITAL HEART PATIENTS’ ASSOCIATION Roger Black Running in for Radio 4 PAGE 21
Transcript
In This Issue... OUR FUTURE IS PATIENT POWERED
Red Socks RuleA fabulous fundraising event
PAGE
17
Why me?A question I have asked myself most of my life.
PAGE
6
issu
e91
Win
ter 1
8
The Story of My Second Open Heart SurgeryAndrew’s heart story
PAGE
10
Introducing Patient Representive Lowri Smith
PAGE
19
Supporting young people and adults born with a heart condition
GUCH NEWSFORMERLY KNOWN AS THE GROWN UP CONGENITAL HEART PATIENTS’ ASSOCIATION
Roger Black Running in for Radio 4
PAGE
21
thesf.org.uk instagram.com/somervillefoundation
f facebook.com/thesomervillefoundation twitter.com/_thesf
Please visit us online
A few weeks ago, we arguably had one of our most successful annual conferences; so good in fact that I believe we caught the Royal Brompton Hospital PR team off-guard. However, despite needing a bigger room and a better sound system, the event went extremely well and we saw record numbers of patients turn out. Streaming on multiple platforms, with viewer numbers getting into the thousands (for some talks) and attendance from as far afield as Greece and Canada, we can be pretty pleased with ourselves. A big thank you to all our staff and volunteers.
Next year the conference will be held in Liverpool and plans are already afoot. We look forward to working with partners and other key stakeholders to make this our most successful conference yet. More details will follow very soon. We will ensure that there is ample time for people to book their place and will endeavour to get the best venue we can afford. We expect to be busy.
Some ‘very clear’ feedback that we received at the conference was that we need to do more to support our older patients. This is not the first time that this has been raised with me and I can
only apologise for the charity not being more proactive. In recent times the standards review and subsequent fallout has dominated much of the agenda, however, this GUCH News issue is dedicated to a ‘Patient Powered Future’ and that includes everyone. I believe it marks a watershed moment for us and a more collaborative and inclusive future.
Since the conference we have had a wave of patient-based interest in supporting what we do. This is perfect timing as we plan to launch our Patient Representative roles in the new year. If you would like to join a small group of individuals at your local specialist centre to represent us (your charity), assist friends and other patients that attend the same clinic and make a difference, then we have just the role for you. This is not an onerous task but an important part of our development plan. For more information please email us at [email protected] and mark your email Patient Rep, providing your contact details. We will then be in touch.
Additionally, if you would like to join our Conference Steering Group then please let us know. This new team is charged with making
sure our conferences are relevant, inclusive, supportive, inspiring and well attended. This year we received sponsorship for the first time in many years and we want to continue that trend and make Liverpool the best conference yet.
At the Royal Brompton we were delighted to announce that the BBC have chosen us to be one of their Radio 4 charities next year. Plans are well underway to make this a great success. It is not just about raising money but also our profile. Professor Jane Somerville, her friends and family certainly did that with a significant fundraising gallery event in September, as did Ellen Maulder with the amazing Red Sock Gala and all our runners at the Royal Parks Half Marathon. It was a hectic few weeks. A big thank you and please do keep up the good work!If you get a chance, please check out our new website, which has just been launched and has a stack of ideas to help you support our work. All feedback is welcome.
In the meantime, do not forget that flu jab. As ever, thank you for your continued support.
Rob Nicoll - Chairman
f bit.ly/ThesfFBgroupJoin our private Facebook group
Thank you to everyone who attended this year’s annual conference at the Royal Brompton Hospital. It was fantastic to meet with so many old friends and a pleasure to be introduced to new people. The
future of congenital heart medicine looks stronger than ever, with exciting new innovations and services on the way.
I was able to glimpse some of the new opportunities at the British Congenital Cardiac Association event at the ECHO Arena in Liverpool a couple of weeks ago. Liverpool will be the venue for our conference in 2019. From my conversations with Dr Petra Jenkins, Dr Jaspal Dua and the cardiac specialist nurses, I know how keen the team in the North West are to support us. We will be building on the success from this year and incorporating your feedback to ensure that next year’s event is bigger and better than ever before. Pencil in the first weekend of October 2019.
This edition of GUCH News contains a mix of patient stories, information and advice. I’d particularly like to draw your attention to the services provided by Mike from Cora Law, who is a very effective advocate for patients who are having challenges at work. Mike has recently had considerable success winning compensation for congenital heart patients who have been discriminated against because of their heart condition. As with all of our services don’t suffer in silence, you are not alone. The Somerville Foundation is here to help.
Of course our help is just part of a much wider partnership, with patients, specialist centres, professionals and families all working together. Our team here is small, with only one full-time member of staff. We face challenges in geography serving the needs of patients throughout the UK and the need to find funds amongst competition for everyone’s time and resources. If you can help us by becoming a Patient Representative, please do volunteer (thanks to everyone who has done so far). Please also help us by donating.
For readers who are celebrating festivities, have a fantastic time; don’t, however, aspire to the marketing and commercially led ideas of the perfect Christmas. Focus on positive mental health, relaxation and accept that time spent with family and friends is a gift that’s truly worth celebrating.
Thank you all for your support.
JohnJohn RichardsonNational Director
NightriderWe are delighted to announce that we are a Nightrider Team Partner for 2019.We are looking for people to take part in Nightrider in:
You can register via the link below for your chosen city or contact us at [email protected] for more information.
Once you have selected your chosen city, scroll down to the Somerville Foundation and register your details. https://www.nightrider.org.uk/
Editor’s letterContentsInside the Winter 2018 edition of GUCH News
Your Heart Stories
4 Perspectives from a child of the 1960s
6 Why Me ?
10 The Story of My Second Open Heart Surgery
News and Events
14 Annual Conference Patient Perspective
15 Annual Conference 2018 Review
17 Red Socks Rule
19 Patient Power; Introducing Patient Representative Lowri Smith
My name is David Makinson. I am married to Chris and live near Wigan in Lancashire. I have one son, Giles (now aged 25) from my first marriage.
My pastimes and hobbies are art and painting, playing keyboards and listening to music (recorded and live), walking and enjoying the countryside and socialising over the dinner table with good food, good wine and good
positive company. I enjoy cooking for friends and always use fresh ingredients; I’m sure it makes a big difference to the quality of life.
I was born at The Middlesex Hospital London in May 1964 to a single mother aged 19, who then delegated her responsibility for me to her sister and returned to Cornwall. The intention was to have me put up for adoption, a common decision at the time
before the welfare system we have today and at a time when social attitudes towards single parenthood were very different from those we see today.
I have never heard from my birth mother, though I have had some contact with her sister, my aunt.
Soon after birth, I was diagnosed with a congenital heart defect, a Tetralogy of Fallot.
David Makinson
Perspectives from a child of the 1960s
4
Apart from the obvious medical attention I would need, the diagnosis meant I could not be put up for adoption. After a protracted period in hospital to assess my medical stability, a decision was made and I was moved to Dr Barnardo’s Children’s Residential home in Barkingside, Essex.
After a year in care, I was fortunate to be fostered by a young clergyman and his wife who had a one-year-old daughter. I moved to live with them in Cambridge in June 1965, with a highly uncertain medical future and probable short life expectancy. They remain my only family to this day.
In 1967, aged three, I went for my first major surgery at The Middlesex Hospital the intention being to perform a bypass shunt to take pressure and workload away from my heart until I had grown sufficiently to consider a repair. This hospital stay and operation is my first memory. I believe I was under the care of Dr Belcher.
The next six years were spent looking very cyanosed and breathless, with six-monthly hospital appointments in London to assess my condition. I went to school nonetheless and lived a normal a life as possible with the exception of ‘Games’, which I was unable, nor permitted (understandably) to take part in. My foster parents wisely directed me towards music, so I had piano lessons and then moved to playing the cello, which I played until my mid to late teens. I now play keyboards for my own pleasure.
The one problem I struggled with at school was being bullied as someone ‘not normal’ my given and cruel nickname rhyming with the first part of my surname ‘Mak’. I’m sure I’m not the only one to have experienced this, but looking back it was very tough at times, particularly as I didn’t have the physicality to fight back. I hate bullying in all its forms today.
In December 1973, at the age of nine, I was admitted to Papworth Hospital in Cambridgeshire for corrective surgery to the Tetralogy of Fallot. I was very fortunate to have Terence English as my surgeon. Sir Terence (as he became) went on to perform many heart transplants at the pioneering stage, and eventually became President of The Royal College of Surgeons. I owe this man, his team and the nursing staff at Papworth my life and I remain eternally grateful to them.
My surgery at Papworth was transformative. The following autumn I played my first game of school rugby and the summer after that my first cricket match the joy I felt at that still brings tears to my eyes. The bullying also stopped at that point!
My health remained good until I was 36, some 27 years after my life-changing surgery. During the intervening years I managed to pass enough ‘O’ and ‘A’ level exams to scrape a degree in History, passed several grades on the cello, played lots of sport, rode motorbikes, went to as many rock concerts as I could and generally tried to have a thoroughly good time. I succeeded.
After my degree I worked in the Financial Services sector from 1987 to 2009, when I sold my share of a business to live a quieter and less pressured life.
At the age of 36, in 2000, with a then seven year old son, I had a serious Ventricular Tachycardiac episode whilst participating in a charity cycle ride from Manchester
to Blackpool. My life had changed again instantly. All my childhood anxieties returned with a vengeance; suddenly the competitive sport stopped, and I had no choice but to re-evaluate my life. Since then I have had three ICD implants and have taken a big dose of Beta-Blockers daily for over 18 years but I’m still here fighting and trying to enjoy life as best as I can. It’s different, that’s all. I have two mottos. The first is ‘Life is too short not to...’ and the second, ‘Life is definitely too short to drink bad wine’.
These days I work and play within my limitations. I am of course very fortunate to have a very tolerant and supportive wife.
I now have annual check-ups for the CHD and quarterly check-ups for the ICD. I also have Rheumatoid Arthritis (diagnosed in 2016), which is a really painful pest and requires ridiculous amounts of medication, but I
refuse to give up. Like most ACHD patients, we have to be as courageous as we can.
We all dread the check-ups in case we are given bad news. We all fear surgery and we all have entirely understandable anxieties and huge frustrations at differing levels and at different times. We also have to deal with those around us, as well as strangers and employers who have absolutely no idea of what a life-long condition is like to deal with on a daily basis. I firmly believe, however, that CHD is the hand of cards we have been dealt with, so we must play the hand we have been given to the best of our ability as leaving the game is not an option. For me, that means using distraction activities like painting and music when I am anxious and for pleasure, appreciating through walking and travelling the world the nature around me, and spending as much time as I can with those who mean the most to me. I try to discard those who are unkind or uncaring they are not worth it.
David Makinson is a talented artist. His painting ‘Lion Heart’ is featured on the front cover of this issue.
I have two mottos: ‘Life is too short
not to...’ and ‘Life is definitely too short to drink bad wine’
5
A question I have asked myself most of my life.
Why was I born with a leaky valve? Why was I the one who had to be careful every time I went out to play as a kid? Why did I have to be admitted to hospital if I needed a tooth out? There was nothing wrong with me, I felt fine!
I wish I had the answers back then, but no, I didn’t. I had to live through the experiences of my life to give me those.
I was born in May 1973 with Bicuspid Aortic Stenosis, my Aortic valve had only two cusps instead of three which meant a regurgitation of blood back into to the aorta on every heartbeat.
Over time this would cause the aorta to enlarge. Therefore, the cardiology team would measure the aorta once a year to look for the first sign of this enlargement happening. It took until I was 39 years old before the aorta
started enlarging and off to surgery I went. Every year prior, I would attend my cardiology appointment (I called it my ‘MOT’). Initially, from the age of 5 to 15, this was at Yorkhill Sick Children’s Hospital, under Doctor Houston’s watch. This hospital sits at the top of a very steep hill in Glasgow. You can see it from miles away. My mum somehow knew of a shortcut; if we accessed an open gate at the bottom of the hill there were stairs up to the main hospital, thus saving us a quarter mile of a gradually rising trek. Use the stairs and get the climb over and done with. Sounds good? Yes?
Nope, not for me!
By taking this shortcut we would have to pass the hospital mortuary and as a kid I would run past the entrance to it. I was terrified – my heart was well and truly pumping by the time we got to the main hospital entrance. But I felt fine!
Each year was more or less Groundhog Day;
my mum and I would have a chat with the cardiologist, I’d go for an ECG, an echo, have a further chat with the cardiologist and then be told to ‘be careful and we’ll see you next year’. Off we went to the hospital cafe for a cup of tea for my mum and a juice and chocolate biscuit for me. We would take the long way along the road on the way out, as I insisted I wasn’t going by the mortuary for at least another year!
I attended Yorkhill until I was 16, then my care was transferred over to the SACCS (Scottish Adult Congenital Cardiac Service) Team at the Western Infirmary in Glasgow. I hit the jackpot with my cardiologist, Professor Stuart Hillis (‘The Prof’). I loved going there for my care as ‘The Prof’ was the Scotland national football team’s doctor at that time and we would discuss football more than my heart issue. This was great for me up to a point, as it helped keep my heart issue at the back of my mind. I’d have the usual chat with The Prof, I’d go for an ECG, an echo, have a further chat with the Prof. “Yes, Stephen, Scotland are not as good as they used to be. Make sure you
Stephen WrightWhy me?
6
keep playing football, and by the way, your heart is fine for another year”. I read The Prof had passed away a couple of years ago, which made me sad. He had a great manner and I was always reassured under his care.
When I was in my early 20s I was told I had high blood pressure. This was so annoying to me! I was in my prime, I was playing semi-professional football! How could this be the case? Again, I was feeling fine!
I was to go on Lisinipril to control my blood pressure and I was not happy one bit! An overnight stay in hospital to monitor what effects the medication would have on me and then I was back home next day. My grandparents came to see me and my grandad noticed I was in a huff (sulking). He seemed almost angry with me and my attitude. He told me to get out of the huff as what I had ‘they’ could fix! What he had they couldn’t. My poor grandad was suffering with lung cancer at the time and his words really hit home with me. He was absolutely right. I live in a time where heart defects can be diagnosed, monitored and fixed! I am so lucky. My poor grandad wasn’t so lucky, he passed away a couple of years later.
After many years of going through the same MOT routine at the Western Infirmary, the SACCS clinic moved to the Golden Jubilee hospital in Clydebank. This hospital is adjoined to a 5-star hotel. It sits on the banks of the River Clyde and has lovely views.
I attended this hospital under the care of Dr Hamish Walker and then Dr Niki Walker. My MOT would continue each year, although I missed the informality of seeing The Prof. Don’t get me wrong, both Dr Walkers were very nice and no doubt great cardiologists, but I did miss Dr Hillis and his chat as I was still playing football each week.
My yearly visits continued until June 2012, when during my MOT the echo picked up an increased measurement on my aorta. The expected sign of something being wrong had finally shown itself.
Being told it’s now time to replace the valve was a surreal experience. I had been waiting on it all my life and it was finally here. I suppose this made everything real. I had got into a routine of being told to come back next year and was able mentally to block out my heart issue – I still felt fine! I was still playing football and trained twice a week. But now the moment I had dreaded all my life was here.
The ‘Why me?’ thoughts were at the forefront of my mind – ‘it’s not fair’, ‘I’m a fit guy’
were constantly on my mind too. But my late grandad’s words stayed with me and thankfully were able to nullify the negative thoughts to a point: ‘What I have can be fixed!’.
Within a few weeks I was given a stress/fitness test, which was running on the treadmill. For some strange reason I found myself trying to impress the doctors whilst running, almost trying to show them that I WAS FINE!
A few weeks later I received a letter advising that the date of my surgery was to be Tuesday 14th August 2012.
Prior to being admitted to hospital I had a meeting with my surgeon. We discussed the operation procedure and risks of doing it (which, to be honest, were better than the risk of not doing it!). I would be receiving a metal aortic valve and have the enlarged aorta replaced with a graft. The good news was I would only need this operation done once. The bad news was that due to it being a metal valve I would have to go on warfarin for the rest of my life. A small trade-off I suppose.
It was explained to me that I would have to have regular blood tests to make sure my blood was within the INR range; thin enough that it wouldn’t clot around my new valve, risking the chance of a stroke.
I was admitted the day before the surgery and I can honestly say the hardest part of the whole experience was saying goodbye and wish me luck to my 11-year-old daughter and my son, who had just turned 8, as I was leaving home to go to hospital. “Good luck Daddy, see you soon”. I still get emotional
thinking about that part.
Once in hospital I was given the usual blood tests, had a consultation with the anaesthetist and then had lunch with my wife in the hospital canteen. I ordered soup and crusty bread but couldn’t eat it due to nerves.
Thankfully my surgeon, Mr MacArthur, came to see me early that evening to discuss the next day’s operation. I had been extremely anxious all day, and nervous about what was about to happen. He advised me he was looking forward to a normal day’s work ahead of him and that he was heading home to watch the soap operas! I really appreciated his relaxed manner as it definitely put me at ease.
At 8pm that evening I said goodbye to my parents and had a massive hug with my wife as they were leaving the hospital. My surgery was booked in for 9am the following morning. Is this really happening to me? I feel fine!
I had been given a sleeping tablet to take and I remember delaying taking it as to me when I took it that would be the start of my operation. I knew I was to be given a sedative on the morning of my operation. A nurse had previously looked at my notes and joked she’d be here all week but will see me at the weekend! And she was right! It was powerful stuff.
I vaguely remember waking up on the morning of my surgery, having a shower, putting on paper pants and going back to bed. The sedative must have been very powerful as I can honestly say that I don’t even remember going from my room on the ward to theatre – I was on another planet, thankfully!
My surgery lasted for 9 hours.
I remember flicking in and out of consciousness after my operation and have very vague memories of the removal of chest drains, like getting punched in my stomach! I also remember being helped to my feet and put on a chair the day after surgery. I was in the high-dependency unit for a couple of days and was then moved back to my room on the ward. I was a bit dizzy from the anaesthetic for a while but started to feel better after a few days.
The nurses have you up on your feet and walking for a bit every day, and only when the physios have seen you walking up a staircase will you be considered to be allowed to go home. 7
The ‘Why me?’ thoughts were at
the forefront of my mind –
‘it’s not fair’, ‘I’m a fit guy’
I stayed in hospital for a total of 8 days before being allowed back home.
One thing that sticks out in my memory is when I walked out of the main doors at the Golden Jubilee holding onto my wife’s arm for support and felt the fresh air hit my face. All of a sudden the reality what I had just been through hit me and I felt so small, so vulnerable and so weak, I burst out crying, grabbing onto my wife. We were both in tears slowly walking the 100 yards to our car.
Getting to see my kids after they returned from school that day was just the best.
Unfortunately, after being home the first night, I must’ve slept awkwardly and managed to roll onto my stomach. I woke up with my scar opened up in 2 places. One phonecall later it’s back to hospital I went! I didn’t feel fine! I was terrified!
The doctors were great though and put in place some mesh-type substance that encouraged tissue growth and allowed me to return home.
The scar eventually healed to the point that it over healed in the areas that had opened up. This left me with keloid scarring which can still be a bit itchy occasionally, but it is manageable.
I returned to work on 6th November that year. I had been off work for just under three months.
Being on warfarin does take a bit of getting used to, but it’s not too bad. There are some foods to avoid, for example green leafy veg
- you can have some but not lots. You can’t have any cranberry, which only affects me at Christmas dinner and I may have to look at all the options on the menu if I’m having a cocktail (no Woo-Woos for me!). You do bruise a bit easier, so I was advised to give up contact sports. My knees were going with playing football so it wasn’t too big an issue. I’ve noticed I feel the effects of alcohol that wee bit quicker since going on the warfarin (not necessarily a bad thing!) although I was always a bit of a lightweight when it came to drinking alcohol. My surgeon had previously mentioned that the warfarin should fit into my lifestyle and be adjusted accordingly, not the other way about.
Since my surgery I have been trying to keep fit and make sure I get the most out of my new valve. I go out on my bike every week in the spring through summer and autumn. Each year I participate in the Pedal for Scotland challenge, cycling from Glasgow to Edinburgh (I’ve raised money for The
Somerville Foundation and Asthma UK – I forgot to mention I’m asthmatic too). I go running on my treadmill at home throughout the winter and do lots of walking all year round. I’ve even had the occasional game of 5-a-side football, albeit not going in all guns blazing.
I now attend my post-surgery cardiology check-up once every 2 years. My consultant is Dr McCulloch. Would you believe his clinic is at Yorkhill hospital? Back where it all started for me! I tell you something though, I take the long way to it - there’s no chance of me walking by that blooming mortuary!
I’ll finish this off by saying that I know I have been very lucky and that my experience has had a very positive outcome. I’ve had great support from my wonderful family and friends. I am absolutely fine!
8
I know I have been very lucky
and that my experience
has had a very positive outcome.
Christmas Cards 2018The greeting inside the cards reads:
“With Best Wishes for Christmas and the New Year”The cards come complete with envelopes in packs of 10
#
Design Size Price No. of Packs Total Cost of packs inc. p+p
Make a Santa 114 x 160mm £3.50 plus £1.50 p+p per pack £
Partridge in a Pear Tree 127 x 127mm £3.50 plus £1.50 p+p per pack £
Midnight 127 x 127mm £3.50 plus £1.50 p+p per pack £
Moonlight Tree 127 x 127mm £3.50 plus £1.50 p+p per pack £
Donation to The Somerville Foundation £
I enclose cheque/PO payable to The Somerville Foundation for a TOTAL of £
PLEASE USE BLOCK CAPITALS
Name
Address
Postcode
Email Tel.
GIFT AID: I am a UK tax payer and would like The Somerville Foundation to reclaim the tax on the enclosed and any qualifying donations until further notice. I confirm that I have paid an amount of UK income or capital gains tax equal to any tax reclaimed. Council Tax and VAT do not qualify.
Please send order form with cheque/postal order (payable to The Somerville Foundation) to: The Somerville Foundation Cards, Saracens House, 25 St Margarets Green, Ipswich IP4 2BN
* If you pay income tax at the higher rate, you must include all your Gift Aid donations on your Self Assessment tax return if you want to receive the additional tax relief due to you.
9
“You’re going to need open heart surgery” is probably one the scariest things a doctor can say to you - it’s definitely up there in the feared words that can be uttered from their mouths. But for many Congenital Heart Defect survivors, it’s not an uncommon thing to have to do.
I’m quite lucky I guess - I’ve only had two in my life, the most recent being in May this year. I’m 29, and I live a normal-ish life. I’m a journalist and a photographer. I live in a normal flat, doing normal things, in south Manchester. You wouldn’t be able to tell me apart from anyone else, really. And the fact I have a big scar down my chest and a defibrillator implanted with wires connected directly to my heart is completely hidden most of the time.
But that’s the truth. CHD can affect anyone and brings with it a multitude of different complications and things to think about.
I was born in 1988 with Tetralogy of Fallot. In 1989, at 11 months’ old, I underwent my first open heart surgery. Roxane McKay at
Liverpool’s Myrtle Street Hospital performed a correction, which included right ventricular outflow tract reconstruction.
Fast forward a quarter of a century or so, and every outpatient appointment I had with Dr Peart up until that point was fairly uneventful. They had monitored the valve all these years, and a narrowing of the pulmonary artery. That was what I thought might need some intervention first, to be honest. But in 2016 the pulmonary valve was deemed to be in need of replacement. The challenge then - as a late-night worker, ex-student and generally not-very-healthy person, was to get fit for surgery.
The ECG at that time also threw up rhythm issues, and I was thought a suitable candidate for an ICD (or Implantable Cardioverter Defibrillator). I was given a CRT-D device - Cardiac Resynchronization Therapy and Defib in one. As shocking (pun intended) as that sounds, it’s actually quite reassuring. There’s a chance my heart could go into an unwanted rhythm, so it’s a backup. It also paces my heart. One of the issues identified on CT and
MRI scans - due to the poor pulmonary valve function - was an enlarged right ventricle wall, meaning the heart had to work extra hard to pump blood to the lungs. The pacing element of the ICD supports the ventricles and allows it to recover over time - at my last check after surgery it looked like I had relatively good heart function, and because of the CRT-D it doesn’t have to work as hard to achieve that.
On to the surgery itself. This was daunting, no word of a lie. It was scheduled for May 18th, 2017, in the Royal Brompton Hospital in London. The day before the Royal Wedding and the FA Cup final. Only one of those I was really concerned about missing!
The thought of what open heart surgery involves frightens most people. Realising they need to cut your sternum in half to access the heart, divert the blood flow, stop the heart, cut into it, take away a valve, put a new one in, then restart it and close, is scary. It’s one of those things that, at certain points, needs to go exactly right. Having watched the BBC series Surgeons: At The Edge Of Life (not
Andrew Stuart
The Story of My Second Open Heart Surgery
10
long before my surgery, too), where they put someone on cardiopulmonary bypass, I can appreciate the utter skill, concentration and dedication needed for this.
I’m thankful that it all went OK. I think I amazed pretty much everyone who knows me by being released from hospital after just 6 days (released is the right word, especially with an amazing cafe right over the road from the Royal Brompton that you can see but can’t get to).
The way I was treated in the Brompton was
brilliant. The nursing staff and healthcare assistants were fantastic, chatty, jovial and full of interesting things to while away the day. One of the main things they tell you to do is get up and moving as soon as possible. The nurses and the medical staff all want you out of bed at least - sitting up, breathing properly, walking and getting the energy and stamina back. I think I only had a chat with my surgeon, Andreas Hoschtitzky, actually by my bed once - the other times he came to see me I had to be found as I was wandering around the ward.
There were scary times, don’t get me wrong. And painful times. I never want chest drains removed while I’m awake again. And sneezing is definitely the worst pain imaginable straight after having your chest bone cut in half.
Waiting around for it to happen - on a trolley, with a fashionable NHS-issue gown to make you look fabulous - was long. I was woken at 6am to have the Hibiscrub shower - and taken down close to 2pm. I woke up in intensive care at around 10pm that night. I was moved back to the Paul Wood Ward on Monday morning - and was out of there by the Thursday.
As far as recovering at home goes, moving back to Wales to live with my parents by the sea helped a lot. A flat promenade to walk up and down every day (and I did that, every day), hills to climb to push my heart even harder, and glorious, glorious sunshine all helped a
lot - as well as plenty of water, painkillers as and when needed and challenging oneself to go even further.
That’s what I did - I set small targets, and smashed them. Rather than setting a huge goal, and struggling to get anywhere near it, setting smaller targets regularly and beating them helps to see the progress. It’s almost akin to refreshing your Twitter feed constantly to see how many likes you have on a Tweet, but it’s much more worthwhile!
And three months later I was back in work, with a new red zip, a new valve and better heart function - but on the outside, it still looks like nothing has happened.
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Every Wednesday I take part in a Cardio Tennis session at my local David Lloyd club. I’m gradually getting fitter but it’s hard work, especially as over the last two years I’ve had to re-learn how to run – I’m still not very good at it. I have recently started Pilates, play squash and badminton with my husband and sometimes go to the gym and swim. I feel so fortunate to be able to be doing them and, although I am pretty competitive, I enjoy myself. (Okay, maybe not Pilates as that’s completely out of my comfort zone but that’s another story…)
I was born in London in 1966. When I was two my GP detected a heart murmur. By now we were living in Nottingham and when I was five we moved to Bromley. My parents were recommended that I be seen by Dr Joseph at the Brompton Hospital in London. That was the beginning of my - so far - 47 years’ association with the place.
My heart condition was diagnosed as ‘subvalvular aortic stenosis with a bicuspid aortic valve (BAV)’. I’ve always said I have aortic stenosis but I honestly didn’t know about the bicuspid valve until six or seven years ago when consultants started to send patients copies of their follow-up letters to GPs! About 20 years ago I asked my then GP for old notes so that I could understand my condition more, but there was no mention of the BAV. In the days before the internet there was more acceptance simply of what the doctors said; most people had nowhere to read up on diagnoses and definitions beyond simple medical books.
I had no physical restrictions but regularly went to the Brompton to have exercise tests and so forth, and I had my first open heart operation in January 1974 – resection of aortic stenosis – performed by Mr Christopher Lincoln. I left hospital two weeks later, the day before my 8th birthday, having a party in the hospital before I left and another one in the July after I had recovered – the only birthday party I ever had outside!
The surgery was successful and I could take part in everything. I loved sport, playing netball, tennis and rounders and I was in school teams. I started clarinet lessons to add to my piano and recorder playing and singing. I was also a keen Brownie and then Guide.
During the next four years Rose Gallery (the children’s wards at the Brompton, in the old South Block) became a second home to me as I regularly returned for small procedures, usually to do with my scar becoming infected. At one time I had a complete experimental scar repair (it failed). The staff on Rose Gallery were wonderful. I especially remember Sister Sweenie, one of the “spotty” sisters (the senior sisters’ uniforms were navy with white spots), a lovely but strict Irish auxiliary nurse who used to get me a fan as I was always hot, and Jane, the lady who ran the playroom and always wore long skirts. Despite many very ill children, it was a happy place, ahead of its time in the way parents and siblings were allowed there with 24-hour visiting. Mum used to say that if I ever ran away she’d know where to look! Despite all this, I was generally a healthy child.
However, when I was 12 my world fell apart. During the summer holidays I took part in an athletics course. I decided, as I struggled round the 400 metre track, that I wasn’t a long-distance runner. The next week at my annual check-up we were told the stenosis had returned. My second OHS was in October 1978, a ‘re-do for sub-aortic membrane resection’.
After the surgery, I remember Mr Lincoln sitting on the end of my bed telling me that the surgery hadn’t been successful this time. There were few alternatives in those days. He told me that I would not be able to do any sports, in fact nothing particularly strenuous. My first question was whether I could still play my clarinet (yes). My Mum’s was, would I be able to have children (probably).
My life up to then had been 50-50 music and sport. Guiding became more important and I achieved my dream of becoming a Queen’s Guide. I played and sang in many musical ensembles including local youth orchestras and the National Scout & Guide Concert Band. We moved once more, this time to Swansea, and I played in the National Youth Orchestra of Wales for three years. I hated not being able to do sport but I’ve always wondered if I would have got as far with music if I’d still been participating in sport. Sometimes there’s a silver lining.
Meanwhile I continued to have annual check-ups at the Brompton. I remember when the echo department opened when I was about 15 and on a school day I travelled all the way from Wolverhampton where we were
Ruth Taylor-DurantMy Heart Story
12
living at the time for Dr Gibson to perform a 15-minute echo! I had stopped growing when I was 13 – I’m just under 5’10” tall. By then I had been transferred to the adult cardiology unit because of my height! Can you imagine that now? For two or three years in my late teens there was a ‘Young Persons’ Clinic’, but whenever I went I never saw anyone else under 100 (or so it seemed)!
It can be disheartening when you can’t join in with things, be it an impromptu football match, a disco (dance to one song, sit out for two, maybe three as you recover, dance to one…), a school residential at an outward bound centre (no disability acts in those days – it was just tough luck), or simply not being able to get to a class on the fifth floor because the lift is out of order. However, I got on with my life, studying music at university and doing a post-graduate secretarial diploma.
I started working in London in arts administration and then as a secretary. I met and married my soul mate Chris and we moved to a small town in Suffolk. I qualified as a teacher. With the backing of my consultant I had two sons, now 23 and 20. Both pregnancies went well. In labour for my first I was told just to say “antibiotics” to literally everyone and make sure you’re put on them. Thankfully we all survived but I am glad more is known about childbirth for mothers with CHD now. I chose to be a stay-at-home mum (I have also had various music students over the years) but I’m sure I would never have had the energy to be a mum working full time.
Meanwhile I continued to see general cardiologists at the Brompton. For many years I was under Dr Oldershaw, a senior consultant. I had absolutely no idea that a GUCH unit was being set up at the hospital by Professor Jane Somerville – no one told me about her or it. I don’t know why I didn’t come under her radar or why my consultant didn’t suggest I move to her (maybe it was a case of not wanting to let patients go as
suggested by Kate Bull in her book Open Hearts).
One weekend in 1997 I was reading the Telegraph Magazine when I came across an article about the GUCH Patients’ Association (the original name of The Somerville Foundation) which was still fairly new. I couldn’t believe what I was seeing – a charity for people just like me! A few months later my husband and I, with our toddler son, travelled to Norwich for a meeting. That day genuinely changed my life. I had got to my early 30s with having never knowingly met another GUCH outside of hospital. Finally Chris and I both found support we’d never really had and I became involved with the management committee until I had my second son.
In 2001 I was told that my condition had deteriorated. I had an angiogram that went horribly wrong and ended up in Addenbrooke’s Hospital with a massive haematoma and needing a blood transfusion. As it was inconclusive I had an MRI. We moved to the East Midlands at the beginning of 2002 and in June Chris and I travelled to London for OHS number three. I was 36. Not long after we arrived on Paul Wood Ward we received the devastating news that my brother Ian had died suddenly aged 38 from complications of his type 1 diabetes. I went ahead with my surgery (‘St Jude aortic valve replacement, resection of residual recurrent sub-aortic shelf and bovine pericardial enlargement of aortic root’ - to be precise!) but it was obviously a very hard time for all of us. I was only in hospital for ten days, but then we had to deal with Ian’s funeral and emptying his house in Hertfordshire. It wasn’t a good year as we were also to lose my father-in-law to lung cancer and my grandmother to old age.
After 24 years of being symptomatic, once I had recovered from the operation I had a new lease of life. 16 years on it still amazes me that I can walk upstairs without getting breathless. I still have to remind myself that it is OK to get out of breath and that I can manage to climb a hill. I continued to bring up my two sons and helped with music in their primary schools and was a school governor. Today my mechanical valve continues to work well.
I couldn’t fault Dr Oldershaw and his choice of ACHD surgeon Mr B Sethia and he had no problems when I asked to be on “the GUCH ward”. Eventually I decided I really did need to move to the ACHD consultants, as the generalists under Dr Oldershaw were just not knowledgeable about ACHD. Of course I wish I had done this earlier – everyone I’ve seen has been amazing. I have actually yet to meet my consultant Prof Gatzoulis in clinic
although that’s probably a good thing as it means I’m doing okay. However, I did meet him at the recent The Somerville Foundation Conference at the Brompton.
In 2010 I was diagnosed with skin cancer and had a malignant melanoma removed from my nose. This wasn’t part of my life’s script! Then in April 2017, after a routine mammogram, I was diagnosed with breast cancer. Thankfully it was discovered early but I still needed surgery (extra complications being on warfarin) and radiotherapy. My reaction to my diagnosis was more anger than anything. I wouldn’t wish it on anyone else but hadn’t I had enough surgeries? I also had to pull out of concerts and we cancelled our family holiday.
At the end of June, for the first time ever, I went into atrial fibrillation. After a couple of trips to A&E and two overnight local hospital stays, I contacted the ACHD team at the Brompton. Dr Rafa Alonso – who didn’t know me - was fantastic in arranging for me to have a cardioversion early on a Sunday morning so that I could go to my elder son’s graduation and start radiotherapy last year.
I’m now 52 and so grateful to be here. It took me a while to pick up sport again but I’m so glad I did. I still play my clarinets in local orchestras and bands. I’m generally healthy: I hardly ever get a cold but tend to do major things – heart and cancer – although I’d rather not.
I am thankful that my parents were a great support when I was growing up and that my wonderful husband has been there for me for nearly thirty years. I don’t know whether or not I’ll need further surgery but I do know that medicine is improving all the time and I’ll never be discharged from that very special place, the Royal Brompton Hospital. 13
It took me a while to pick up sport again but
I’m so glad I did...
It is Saturday 6th October. 9am. I arrive at the entrance of the
Royal Brompton Hospital. A smiling lady asks me if I am here for
the conference and I very willingly reply, “Yes, I am!” Mixed feelings
of happiness and anticipation as I walk into the hospital and head
towards the registration desk to get my name badge. Are there going
to be a lot of people? Will I get the chance to talk to them? Are the
talks going to be interesting? Why did I finally decide to travel all the
way from Greece to the UK for the annual The Somerville Foundation
conference? Well, too many questions which were all given answers
during and after the conference.
I think it’s time I briefly introduced myself. My name is George
Lampropoulos, I am 37 and from Athens, Greece. I was born with
TGA, VSD and PS and have been operated on three times so far in
different hospitals in London. As soon as I found out about the
annual conference and its location in London, I was so excited and
started looking for flight and accommodation options. It would be
the first time I would attend such an event, but I was really looking
forward to it. People who had attended previous similar events said
it was really worth it, so I thought I’d give it a try despite the distance
– and I am so glad I did.
It was a great chance for me not only to meet other GUCH patients
and hear their amazing stories and exchange ideas and thoughts
with them, but also a unique opportunity to meet medical staff.
We heard very interesting talks, from the importance of technology
and the progress in the medical field, which will enable us, GUCH
patients, to lead a healthy and a longer life, to the inspiring story of
a patient who went through a lot of difficulties but managed to keep
a positive attitude.
This last bit is one of the most important parts of this conference for me. Living a life with a CHD is definitely not an easy thing: physical difficulties, psychological ups-and-downs and continuous check-ups are some of the features of the life of a CHD person. However, as was mentioned during the conference, education and a positive attitude can be key factors to a healthy and happy life. For example, I have always known the name of my CHD but never really knew until recently what it really meant. I only knew it was a ‘serious thing’, but I felt much calmer when I finally decided to ask doctors and nurses for more information, and to look up for myself information related to my heart issue. In this way, medical terms seemed less frightening and easier to understand. Talking about your heart issue and expressing your thoughts and fears can be a great help – and this is what The Somerville Foundation really does through the conference and online social media, including the Facebook group. It gives you the chance to talk to people, including other patients, who share your anxieties and problems as well as get professional information and help.
Finally, as I always say to my doctors and friends, ‘balance’ is a key factor to CHD life, as in all parts of life. That is, a positive attitude is very important, but this does not mean that we should not be allowed to worry and/or cry when we feel like it; and what better place to do that than at The Somerville Foundation Annual Conference!
From the bottom of my (TGA) heart, thank you all at The Somerville Foundation for organising the conference, and for offering us the chance to get so much useful information.
A big thank you to Royal Brompton Hospital, all the attendees, speakers, exhibitors and sponsors who were at our Annual Conference this year.
Our 2018 Annual Conference saw our first Facebook Live streaming and both Twitter and Instagram patient takeovers. We are delighted
to be able to share the videos with you. Just click on the link below the speakers to view each video.
We’ve taken on board your feedback and are planning our 2019 Annual Conference in Liverpool to be bigger and better, more accessible and patient centred.
Current and future models of careDr Natali Chung, Consultant cardiologist, Guy’s and St Thomas’ Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/2153074468266635/
End-stage CHD: the next big thingProfessor Michael Gatzoulis, Consultant cardiologist, Royal Brompton Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/1424371477693227/
Pulmonary hypertension and CHD: where next?Dr Kostas Dimopoulos, Consultant cardiologist, Royal Brompton Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/310711563052378/ 15
Catheter interventions: challenges and opportunitiesProfessor Alain Fraisse, Consultant and director of paediatric cardiology, Royal Brompton Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/157213808550995/
Upbeat - A journey from surviving to thriving Beth Greenaway (Author and ACHD patient)https://www.facebook.com/thesomervillefoundation/videos/271182276937185/
Meet the team and panel discussion https://www.facebook.com/thesomervillefoundation/videos/1220248944782646/
Partnerships and collaborations RB&HFT and KHPRichard Grocott-Mason, Medical director and consultant cardiologist, Royal Brompton Hospital https://www.facebook.com/thesomervillefoundation/videos/1093035280862951/
Transition and networksLynda Shaughnessy, Clinical nurse specialist in ACHD, Royal Brompton Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/477425492761572/
Advanced imaging for ACHDDr Wei Li, Consultant in ACHD echocardiography, Royal Brompton Hospitalhttps://www.facebook.com/thesomervillefoundation/videos/198149527632750/
Before every big yachting campaign, Sir Peter Blake’s wife Pippa gave him a new pair of socks, for good luck. On Christmas Eve in 1994 she gave him a red pair, and he wore them for the first race of the 1995 America’s Cup campaign in San Diego - and they won! And every time the
New Zealand yacht Black Magic went on the water for the rest of the series Blake would wear them. On one occasion he was injured and couldn’t race, so there were no red socks on board, and for the only time in the 1995 campaign the black boat lost. So it was decided that the socks were lucky and the team started to wear red socks throughout the campaign. They continued to win, ending in a huge victory for New
Zealand. In support of the challenge, many New Zealanders wore red socks, from the prime minister to bus drivers. Now, over 20 years later, those red socks have become a tribute to Sir Peter Blake and, as Ellen tells us, have become “a symbol of what we love most about being Kiwis. No matter what the odds or the competition we face, if we set our sights on a goal, we can achieve it.”
Red Socks are not only for luck, they represent strength and willpower. When Ellen was first ill in hospital, her Dad rushed out to buy her a pair of little red socks. He spent hours scouring Southampton’s high street before he finally found a pair. The doctors let Ellen keep them on while she was wheeled into theatre and she had them on when she came out too. Her family have always said it was the socks that pulled Ellen through her operation and before long, all the babies in her ward were wearing them! She then wore them to every hospital appointment and for each of her surgeries. When Ellen had her most recent op, they became a real talking point on the ward. One wonderful nurse, Linda, even started wearing a pair, which she wore to Ellen’s follow up appointment too! Ellen says “They gave my parents strength when they needed it most and now they represent courage and luck, overcoming
Red Socks Rule
Nicola Graves
17
challenges we think we can’t face. To me,
red socks represent hope and overcoming
challenges”.
Ellen has never looked back and, following her
surgery, threw herself into organising a large-
scale gala dinner to thank The Somerville
Foundation and two other charities who have
supported her on her journey. Very aptly, Ellen
chose to call her event The Red Sock Gala and
it was a true night to remember. The gala
took place on Saturday 8th September at the
Cambridge Hilton and saw Ellen, her friends
and family raise an incredible £8,505.97.
Development Director for The Somerville
Foundation, Nicola Graves, was proud to
attend and speak at the gala, telling guests “It has been an honour to get to know Ellen and to watch her fly. We are all incredibly proud of how far she has come”.
Thank you Ellen from the bottom of our hearts.
18
Since the very early days of the GUCH Patients’ Association, The Somerville Foundation, as it is now known, has tried to meet the challenge of serving a relatively small community spread over a wide geographical area. This task is particularly difficult as within the patient groups there are several sub-sets, each with differing needs. In contrast to coronary heart disease patients, who are more likely to be those over 65, congenital heart patients include teenagers, women of childbearing age, middle-aged and older patients. Within our patient groups there are, of course, those who are currently very healthy and patients at different ages who are nearing the end of their lives. There are also specific issues affecting patients at particular units which will have an impact on many patients being treated there.
However, the issues facing individuals may differ considerably within each unit. A patient who is on the transplant list at the Brompton may share more in common with a transplant patient at Southampton than with a fellow Brompton patient who is trying to start a family.
An effective strategy to raise awareness and help raise funds needs to recognise the factors that motivate patients most, alongside supporting individual centres.
StrategyOver the next few months we will establish two regional representatives at each of the Level One centres. In addition, we will aim to have a Patient Representative who raises awareness of the needs of:
§ Women who wish to start a family
§ Transplant patients
§ Mental health and wellbeing issues
§ The needs of the black and minority ethnic (BME) community
§ Young people
§ Older patients
There will therefore be a network of
seventeen people, eleven based around
regional specialist centres and six people
representing the identified needs listed
above.
Representatives will:
§ Update fellow patients about changes or issues at their centre or about their specialist area through regular blogs on the new website
§ Work closely with specialist nurses, helping to ensure accurate information reaches patients and effective patient feedback is shared
§ Represent patients on local planning groups or national groups when appropriate
§ Raise awareness using local and national media
§ Support fundraising locally
§ Provide evidence, stories and quotes for fundraising bids.
Join our mailing list today and receive GUCH News FREE straight to your inbox. Send your email address to [email protected] requesting GUCH News.
From Lowri...Hi, my name is Lowri Smith and I live in North Wales. I receive the majority of my cardiac care in Liverpool but see an electrophysiologist at the Royal Brompton in London. I met some of you at the meal I organised at Carluccio’s after the conference this year. Thank you to everyone who was able to attend. I lost my voice that evening! I am already planning our next gathering which will be in Birmingham in February. Remember, anyone can organise meet-ups big or small. I thoroughly enjoyed the conference and left feeling deeply inspired. Mum and I learnt a lot. It was Professor Gatzoulis’ talk that made the greatest impact. He is extremely passionate about improving care and education around CHD.
I am delighted to have been accepted for the role of Patient Representative at The Somerville Foundation. I am genuinely excited about this opportunity. I will be one of the Patient Reps covering the North West (North Wales, Cheshire, Isle of Man, Manchester and Merseyside). I am passionate about patient engagement and advocacy. This role gives me the opportunity to use my experiences as a patient for the benefit of our community and future care. I will be representing you, so I want to know what issues you are facing, how you think The Somerville Foundation can help, examples of good care and examples of bad care. We need to know about the bad care so that we can help change policies,
practices and culture. Examples of good care can act as a guide and provide positive feedback to underappreciated medical staff. Sometimes it’s just nice to know your efforts are appreciated. I also want to know about what you think of the services The Somerville Foundation currently offer and what you think they should be offering. Do you have any ideas? The Somerville Foundation is a nationwide charity, but for too long many of us in the North West feel we have been ignored. As is often the case, focus seems to be on London and the South of England. I want to change that.
The NHS consultation in 2016/2017 caused chaos in the North West with the eventual collapse of the Manchester-based service and the exit of the only ACHD surgeon in the North West. He is now employed at Royal Brompton. Despite this the specialist nurses continued to provide care to our large community. Fast forward to September 2018 and the new Liverpool-based service was launched. It is based in the Willow Suite at Liverpool Heart and Chest Hospital. Two new ACHD consultants and two new specialist nurses have already been employed. More staff are expected to join the team in the new year. NHS England have confirmed that Manchester Royal Infirmary will continue to provide maternity care to women with ACHD and pre-conception counselling. There are currently many new and exciting developments happening in Liverpool due to investment
in healthcare and biomedical technology. I would love to see the development of a dedicated ACHD service in North Wales. But I’m realistic. This is highly unlikely (my consultant spent many, many years trying to make this happen) due to the chronic shortage of ACHD specialists and a lack of funding. But wouldn’t it be amazing if we saw the development of a dedicated ACHD inpatient unit in the North West within the next 5-10 years? We must help build a fantastic service in Liverpool which has the skill and expertise required for this complex branch of medicine. I think this will require lots of partnership-working and innovation. I believe that the foundations are already there thanks to the specialist nurses. They are deeply committed to their patients. But we need to engage with them. We know precisely what issues affect us and why. We need to feed back to them and their management. NHS England is slowly realising that patient engagement is an important factor in service development. I am looking forward to working with The Somerville Foundation and YOU. My role is to represent YOU.
for Heart PatientsWe are delighted to have been chosen by Havercroft Construction as their new charity partner. The company, based in Brigg in
North Lincolnshire, specialises in new-build industrial units and alteration and refurbishment projects within the industrial, commercial, public, private healthcare, food and retail sectors. The team are currently refurbishing Ransomes Euro Park in Ipswich and celebrated their arrival by making a generous donation to The Somerville Foundation.
They are working hard to raise awareness of congenital heart defects and are planning an auction later in the year, the proceeds of which will all go towards helping us do more for our patients.
Thank you Havercroft Construction
Roger Black Running in for Radio 4We are thrilled to announce that in January we will be heading into the studio with Olympic silver medallist and world champion Roger Black MBE to record a BBC Radio 4 appeal.
The appeal will air sometime between February and May 2019. We will be sure to keep you posted as soon as we know the exact date, so that you can tune in and encourage everyone you know to listen and support us.
Roger was born with a leaky aortic valve and wasn’t allowed to do athletics until he was 18. He has chosen to support The Somerville Foundation because he believes passionately in the importance of building a brighter future for heart patients.
The appeal has the potential to be a real game changer for us, raising both awareness of CHD and vital funding to help us to do more to help patients.
Thank you Roger – we are beyond excited to be working with you!
We could not be more proud of the 10 #teamthesf runners who completed the Royal Parks Half in October. We are very grateful to them for both getting out there and putting one foot in front of the other and for raising over £3,500 in the process. Well done to you all.
Thank you for your determination over 13.2 miles and your dedication to fundraising for The Somerville Foundation.
If you would like to run, ride, bake, sew or take up a challenge for us in 2019 please get
in touch for fundraising ideas and support. Gillian Warson Race Report
2018 was the third time that I ran the Royal Parks Half Marathon for The Somerville Foundation. Unfortunately the balmy weather of Saturday 13th October was not reproduced on Sunday 14th, and it was an extremely wet line-up at the start. Mercifully it did not rain hard again until the end, so I was spared a total soaking! Weather aside, I absolutely loved the run and was delighted to finish with a personal best - over five minutes faster than my previous RPH. This is really special race. Not only is it wonderful to run past wonderful landmarks such as Nelson’s Column and the Albert Memorial, there was also great support from a cheering crowd, drummers and musicians. The rain closed in as I approached the finish line, but my spirits were not dampened. I had run my best and it is such a delight to run in my Somerville top as I know that all the money that I have raised will go straight to a good cause. Here’s looking forward to 2019…
Well done Gillian Warson and Clare Nicholl, still smiling at the end.
Great team effort from ZetaSafe (www.zetasafe.com/) Andrew Lewis, Clare Nicoll, Matt Burton, Chris Ayris, Martyn Sherratt, Ian Selby and Megan Hope
Thanks Dr Elizabeth Orchard, Consultant Cardiologist, for running for us again.
Thank you Ian, we loved your WhyIrun campaign. Watch the video https://vimeo.com/286068704
Finland 30th July – 4th August 2018I would like to thank The Somerville Foundation for giving me the opportunity to represent them at the ECHG conference in Turku, Finland. The European Congenital Heart Groups is a collection of organisations from all over Europe, working together for the benefit of patients. It was an extremely well-organised conference. Apart from the Finnish team of 13, another 31 delegates attended from 15 countries (Australia, Belgium, Cyprus, Denmark, France, Germany, Greece, Italy, Liechtenstein, Norway, Sweden, Switzerland, The Netherlands, UK, and United States). We all stayed at Linnasmaki Hostel which was in a very peaceful location surrounded by trees! We had some
excellent lectures during the week which included: ‘Long-term results of paediatric cardiac surgery in Finland’, ‘Cell-free human heart valves’, ‘Clinical psychology and peer to peer support in adults with congenital heart disease’, ‘Global Alliance for Rheumatic and Congenital Hearts’, ‘Latest developments of pacemakers’, ‘Taking care of Yourself – Nutrition, diet and sports with CHD’, not forgetting an update from the ECHG working group of their achievement over the last 2 years.
In addition to this there was the usual ‘Poster walk’, where every country displays a poster about their organisation, and the legendary football match (luckily I was a cheerleader). This is a very moving experience and it is to remember the GUCHs who have died, particularly since the last conference (I found this especially difficult as four people I had known very
well had died). It is always rounded off with a minutes’ clapping in celebration of their lives.
We also had a visit to Turku city centre, Turku Castle and a wonderful boat trip to Kuusisto which gave us the opportunity to see a little of the landscape. We also had the opportunity to either go canoeing or try mindfulness. The Finnish organisation also celebrated their 20th anniversary so a special dinner was arranged, and on the last night we all dressed up for the Gala Dinner, which was splendid and we were able to sample some Finnish delicacies.
Once again I was very touched by seeing what a unique experience this is, how everyone comes together despite any difficulties and gains so much from it.
Update on ECHG Conference
Julie Scanes
23
Compassion is the concern for pain and suffering, whether our own or someone else’s and, most importantly, the desire to relieve it. Compassion can be given to yourself or others.
Generally we are very good at showing compassion towards other people but somehow find this more difficult in relation to ourselves.
Research shows that being compassionate towards ourselves, having a kindly and encouraging attitude to our own pain and suffering, is not only beneficial to our own wellbeing but also the wellbeing of others. Self-compassion helps us be more resilient and able to cope. Giving compassion to self or others lowers stress and calms the body.
With self-compassion, we give ourselves the same kindness and care we’d give to a good friend.
Kristen Neff
When a friend or loved one comes to us feeling panicky, upset or in pain, we do our best to reassure them, express our understanding, be kindly and offer support. We don’t always extend the same courtesy to ourselves. Instead when we have the same feelings of distress, upset or shame, very often our response can be to criticise ourselves, or tell ourselves we shouldn’t be feeling this way and judge ourselves harshly. Being hard on ourselves in this way increases our distress and suffering, including symptoms like pain, anxiety, and physical agitation.
Sometimes we mistake compassion for weakness, self-pity or self-indulgence. Perhaps we feel we are ‘underserving’ in some way, selfish, or dismiss it as ‘new age, hippy stuff’. Learning to be more compassionate towards ourselves can certainly be quite a challenge.
Self-kindness and compassion is learning to be a friend, to extend kindness and well-wishing, to ourselves. Fostering our inner helper rather than just listening to the inner critic or bully. If you notice you are being hard on yourself, it can be helpful to ask yourself:
Would I treat a good friend the way I am treating myself right now?
Here are a few thoughts on how we can encourage compassion for ourselves in our daily lives. A first step is to acknowledge the painful and difficult, recognise when we are under stress, and whether this is connected to our health or other challenges in our lives. It’s helpful to notice our responses, whether that’s in the body, mentally, or emotionally. We all have our automatic and habitual reactions that don’t always work in our favour, or we perhaps notice and blame ourselves for these and so increase our distress further. Perhaps learning new ways to observe our experience and respond with kindness could be a worthwhile new approach. Consider how you might care for yourself:
§ Physically this might mean softening, finding ways to release tension and soothe the body.
§ Mentally noticing the tone of voice in your thoughts. How are you speaking to yourself? Would you talk to someone else like that? Work on developing a friendly manner in your tone. Imagine someone you respect talking to you.
§ Emotionally being alongside and befriending your feelings. Reminding yourself of the ways you can comfort and soothe yourself. Is there anything you could add to the list or do more of?
§ Connecting with others. Loss, pain and suffering is part of the human experience and something we all have in common. Reaching out to others and sharing ourselves and our stories can be a real antidote to feeling isolated and alone (this goes both ways).
§ Spiritually through prayer, connecting with nature or nurturing the values which are important in your life.
There has been much interesting research and development in this area in regard to supporting both our mental and physical health. If you would like to explore further, Kristin Neff and Chris Germer are pioneers in this area. Their websites have plenty of information: http://self-compassion.org/ and https://chrisgermer.com/
In his book The Compassionate Mind, Professor Paul Gilbert outlines the latest findings about the value of compassion and how it works, and takes readers through basic mind-training exercises to enhance the capacity for, and use of compassion.
Not only does compassion help to soothe distressing emotions, it actually increases feelings of contentment and wellbeing. Paul Gilbert
Please do be in touch, I’m always up for a chat about how any of us could bring more self-compassion to our lives or for any other matter which may be concerning you.
People born with a heart defect are at greater risk of mental health problems
One in every 125 babies is born with a heart condition – but thanks to modern medicine more infants are surviving than ever before. In the developed world, 90% will now live into adulthood, compared with just 20% in the 1940s. However, there is no cure for these conditions and the person needs lifelong medical monitoring.
Congenital heart disease (CHD) doesn’t just affect the body – it affects the mind, too. A growing body of evidence shows that people with CHD are more likely to suffer from mental health problems, such as anxiety, depression and post-traumatic stress disorder.
To date, this psychological impact has been understood as a consequence of the additional stressors that living with a serious lifelong medical condition can bring, such as missed schooling, spending lots of time in hospital (from childhood), and having to undergo frequent surgery. I know from personal experience how challenging this journey can be.
But a relatively new understanding about how our bodies regulate feelings of safety,
risk and social connection may help to make sense – from a biological perspective – of this increased risk of mental health problems.
Flight, fight or freeze
Polyvagal theory, which draws on the latest developments in neuroscience, psychology and biology, proposes that one of the body’s most important jobs is to avoid threats in order to keep us safe. To this end, the body flits between three different “systems”, depending on how safe we feel. When all is well, we stay in our social engagement system. This is our most evolved and healthy way of being. In this mode, we feel safe and sociable, and we are best placed to grow, develop, learn, recover and heal.
When we feel under threat, the fight or flight system is activated. The nervous system is called to action and we feel compelled to either fight or run to safety. This is felt as anxiety. However, if we feel like our life is at risk, we switch to our most primitive system by “playing dead”. Physiologically, this system is deactivating – we become immobilised, feel numb or dissociate. Afterwards, we may struggle to recall what happened to us because the parts of our brain that make sense of events and store memories are shut down.
To feel healthy we need to be able to assess and adapt to our environment when we are both safe and unsafe. How well we can do this is partially shaped during our early
Dr Liza Morton
CHD and Mental Health
25
People living with CHD might
also benefit from mindfulness,
meditation and breathing techniques to
help them feel safe
years. If we experience a lot of trauma when we are growing up, we may be more likely to interpret situations as threatening. This affects how we manage stress. As social animals, it can also influence our relationships, as we need to be in the social engagement system, most of the time, for social connection.
Since the heart is central to our nervous system, any heart problems may affect how efficiently our bodies respond to threats. This could, in part, explain why people with congenital heart disease are at greater risk of anxiety, depression and post-traumatic stress disorder. This risk is further increased by exposure to potentially traumatic early life events, such as surgery and being separated from parents due to periods of hospitalisation.
Feeling safeThis has important implications, from cradle to grave, for people living with a heart condition. This understanding could better inform medical care by focusing on establishing feelings of safety, for example,
by promoting the importance of the parent’s presence, touch and soothing voice to the child while supporting the psychological health of the child’s family.
Teaching medical staff how to manage distress, how to communicate compassionately and the importance of encouraging the presence of loved ones would also be beneficial. This understanding also suggests possible interventions, specifically touch, play and music therapies for children.
For adults, a focus on safety and emotional regulation may be more beneficial than talk therapy. This seems particularly important for a population who may have grown up during a time when parents were discouraged from visiting their children in hospital and who may have endured illness and difficult medical experiences without the soothing presence of their parent. People living with this condition might also benefit from mindfulness, meditation and breathing techniques to help them feel safe.
We should also look to improve awareness and understanding about this hidden
population – doing so would support social inclusion and feelings of connectedness and safety within wider society.
Article published with permission from ‘The Conversation’ https://theconversation.com/people-born-with-a-heart-defect-are-at-greater-risk-of-mental-health-problems-97881.
This article has been adapted from my book chapter in Clinical Applications of the Polyvagal Theory: The Emergence of Polyvagal-informed Therapies, edited by Prof Stephen Porges & Deb Dana which came out this year and is available here: http://books.wwnorton.com/books/Clinical-Applications-of-the-Polyvagal-Theory or from amazon and other online retailers.
If you feel that you need some tips for feeling safe after reading this article please follow this link: https://www.drlizamorton.com/research-blog/feeling-safe-an-embodied-understanding-of-living-with-a-heart-condition-from-birth 26
1 Exercise really is good for you! If you are a ‘couch potato’ your skeletal muscles and breathing muscles become much less efficient. This puts additional strain on your heart and lungs -
keep yourself as fit as you can and you really will feel better!
2 Taking part in regular exercise reduces the risk of developing diabetes, brittle bones (osteoporosis), some cancers such as bowel cancer and breast cancer and helps treat high blood
pressure.
3 Exercise is a great social activity. Find a form of exercise you enjoy. There is lots of evidence to show that regular exercise improves mood and reduces anxiety.
4 In general aerobic exercise is best for the heart (walking, running, cycling, swimming). Isometric exercise (such as lifting heavy weights) puts more strain on the heart and is
better avoided or should be taken with caution.
5 If you are not sure how much exercise to do, or what is the best sort of exercise, ask for an exercise prescription! This is a specific prescription you can be given that will advise you
exactly how much exercise to do, what is good for your heart and what is more of a problem.
6 You can still exercise if you have joint or muscle problems. However, get some advice from your GP or ask for referral to a local physiotherapist who can assess and advise.
7 The American College of Cardiology have suggested that exercise activity should be discussed with you every time you see a clinician. This recognises the importance of encouraging
you to exercise regularly. It is also important to make sure that you are not doing anything that might put you at risk. If no one discusses exercise with you, then you should ask for advice from your nurse, your surgeon and your cardiologist!
8 There is a lot of information available for patients with congenital heart disease at the online exercise resource https://chd.heartresearch.org.uk/. This is designed for both
children and adults with congenital heart disease.
9 There are some exercise techniques which can help strengthen your lung muscles and might improve your breathing. The physiotherapists at your local ACHD unit should be able to
advise you if this might be useful for you.
1 0 If you are exercising and you feel faint or get palpitations you should ease up and discuss with your cardiologist. If you faint during exercise, it is very important to let
your cardiologist know. However, in general exercise is a very safe and effective way of improving your healthcare.
Graham Stuart Consultant Cardiologist, Bristol Congenital Heart Unit
Caroline EvansSenior Cardiac Physiotherapist, Bristol Heart Institute
Craig Williams Professor and Director of Children’s Health and Exercise
Research Centre, University of Exeter
Dr Graham Stuart
The experts’ view:10 exercise tips for the ACHD patient
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Working during winter: What’s right, what’s wrong and what the law says…
Winter can be wonderful; full of family, festivities, fine food and fun. It can also be a bit of a nightmare. Cold offices and factories, transport troubles, colds, flu, bugs and SAD (Seasonal Affective Disorder).
Some of these challenges can be particularly difficult for congenital heart patients. Cold weather makes your heart work harder to stay warm and strong winds can literally take your breath away. Flu can be serious for those with existing heart conditions, which is why the NHS recommend vaccination from your GP in October or November, or later if you’ve missed it.
The good news is, however, that employers are required to look after your health and safety and make reasonable adjustments to ensure that employees with disabilities, physical or mental health conditions aren’t substantially disadvantaged at work.
Health and safety laws do not provide a legal minimum workplace temperature. The temperature in all workplaces inside buildings must be ‘reasonable’.
However, guidance suggests the minimum temperature in a workplace should normally be at least 16 degrees Celsius. If your employer closes because of poor
weather you will normally be entitled to full pay. If you experience emergency childcare issues due to school closures then anyone with employee status has the right to take reasonable unpaid time off in order to arrange care.
If your heart condition causes you to require extra time off work for medical appointments, these should be permitted by employers. If you do need to take more time off sick because of your condition, you may worry that this will trigger your employer’s absence management policies. If this does occur, then the time off because of your condition should ordinarily be discounted from any periods which are reviewed for the purpose of attendance scoring. An employer will be expected to take your condition into account in this way.
It’s always worth finding out what your rights are. Call The Somerville Foundation on 0800 854 759 or email [email protected] and we can connect you with our specialist employment lawyer, Mike from Cora Employment Law who can offer free initial advice.
If you can, have an enjoyable time this winter. Remember though, if things do go wrong, you’re not alone. The Somerville Foundation is here to help.
Winter WorkingJohn Richardson
...employers are required to look
after your health and safety and
make reasonable adjustments
to ensure that no employee is
substantially disadvantaged
at work
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For your free fundraising pack, please email [email protected]. It doesn’t matter if you don’t know how you’d like to fundraise, a member of the team will be happy to contact you to help you decide.
It’s not just physical activities that can help raise funds either; you can help from the comfort of home by doing things like a sponsored silence, a read-a-thon or giving something up, sharing our Facebook posts or contributing to our blog: https://thesf.org.uk/get-involved
A few thank yous for those we haven’t mentioned already in this issue:
§ Our founder Jane Somerville and her team of helpers for the event at Annely Juda Fine Art in London in September that raised over £30,000 for The Somerville Foundation. Jane’s work has made such a lasting impact in the world of cardiology and we are so grateful that she is able
to contribute so much to The Somerville Foundation
§ Ipswich Mavericks for selecting us to be their chosen charity this year
§ Liza Davies and Jo Chapple who rode Coast to Coast raising £1,011
§ All of our regular and one-off donors who support the work that we do
§ Andrew Stuart and Ian Hawkins for their social media takeover at the annual conference
§ Forrester Golf Club Ladies and Mens Teams who combined have donated £3,818.63
§ Beth Greenaway for hosting a workshop and speaking at the conference
§ Tineka Dixon for sailing around Cape Horn and raising £2,739
§ Colmworth Ladies who raised £266.40
§ Michelle Embleton who ran 18 races this year for us and raised £920
§ All of our Facebook Birthday Fundraisers
§ Vicky Hendry and Mike Hocking for volunteering at our annual conference
§ Nicky Roberts for creating resources for schools and delivering assemblies at a number of schools which resulted in sales of hundreds of bracelets
§ Lauren Franklin for volunteering for us as a marketing officer for 6 months, in particular for her help with Heart Week (CHD Awareness Week) in Feb
§ Our Trustees for their commitment and dedication to The Somerville Foundation
§ Thank you to everyone who has helped us this year. We couldn’t do this without you
Thank You From The Bottom Of Our Hearts
You’ve sailed, you’ve baked, you’ve run, you’ve climbed, you’ve given up alcohol and taken up swimming! We would like to say a huge thank you to everyone who has fundraised and volunteered for us over the last 12 months. Your hard work and determination helps us to keep on providing vital services for heart patients. Please don’t stop, we need you to keep going so that we can keep going.
If you’d like to share a story with us in a future issue of GUCH News then don’t be shy – get in touch! You can write yourself or we can team you up with one of our friendly, supportive writers who can help you shine.
The smallest amounts can make a big difference. If you can, please donate to us today to help us continue the work we do for adults born with heart conditions. Visit our website or give us a ring for more info on easy ways to support us.
