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Eurohearts: Emotional Impacts and Effects of Living with a CHD

January 23, 2013

I took part in a workshop exploring the emotional impacts and effects of living with a congenital heart condition. I heard the thoughts, feelings and experiences from everyone in the room – a cross section of an international GUCH community.  It was interesting to hear the similarities and differences in the experiences, and most notably the common theme seemed to be that the highest emotional impact was experienced alongside big, life changing events, such as surgery, pregnancy and transitioning from pediatric to adult care.

 

During discussions around our individual experiences of transition, most delegates said that theirs had been fairly negative, unsettling and stressful. Some people said this was largely in part because they weren’t being seen by a specialist GUCH cardiologist. If in the right hospital under the right specialist team, this problem should not occur in the UK for we are set up with specialist GUCH cardiologists, precisely to give expert care, information, advice and guidance, for best ongoing care and treatment physically and also emotionally. Some of the experiences reported by some of the delegates during the workshop made it very clear how important such a specialism – and access to it – really is.

 

It was also felt that the lack of privacy experienced by some people during consultations and physical examinations left them feeling over exposed during that awkward, often embarrassing journey of adolescence. Many wanted their parents present during consultations because they always had been and negotiating a lone relationship with their doctor suddenly felt very intimidating, and staying alone in hospital overnight following surgery or a procedure, rather than being accompanied by family, only added to the stress and anxiety experienced.   This of course is completely understandable – and if this is something that you are worried about, it’s worth chatting to your cardiac liaison nurse or cardiologist. Some hospitals do have the capacity to accommodate a parent if it’s the first time a young adult has been treated as an in-patient, or they may be able to be a bit more flexible with the visiting access.

 

We all agreed that it would be great if within hospitals, there could be areas of “normalcy” – places with bright walls, fun furniture, games and televisions. This does exist to a certain extent in some hospitals, but not in all – I appreciate that cost and space may be prohibitive, but we did all feel that somewhere like this for each hospital would really give people transitioning a place to go to relax and meet other people going through similar things – to create a more social environment rather than feeling alone.  Give your hospital feedback – let them know if this is something you think would benefit you or the next generation of GUCH patients. They may not be able to accommodate it, but without feedback, enthusiasm and ideas it won’t happen!

 

Pregnancy and family planning were two other common issues that arose during the workshop – many people admitted these subjects caused particular anxiety and stress.  Some women with a congenital heart condition may need to take different types of contraception, It’s really important that you discuss your contraceptive needs with your cardiologist or cardiac liaison nurse – it may be embarrassing but they’ve had these conversations many times before. It’s the same with thinking about starting a family – some people in the workshop grew up assuming they’d not be able to have children at all, only to be surprised later in life when they realized this was not the case, and that there were possibilities for motherhood, and that they could get the support to have safe, healthy pregnancies. Conversely, and sadly, others said that they’d always assumed they would be able to have children, and they never discussed the issue with their cardiologist, and then were crushed to be advised later in life that pregnancy would be considered a significant risk. The bottom line that came out of this area of discussion was the importance of having an open, honest relationship with your cardiologist – let them know when you start having sex, let them know if you are thinking of having a baby or if you have worries around it. These things are natural and experienced by many GUCH patients growing up, and your cardiologist will be able to give you the most personalized advice and support.

 

Nowadays, due to advanced surgery and treatment, many patients are able to live long and happy and relatively healthy lives.  Because of this, we are becoming increasingly susceptible to developing other complications and conditions, such as aquired heart disease. The advice in the workshop was very much to enjoy an active, healthy lifestyle with moderate exercise and a sensible diet. GUCH patients are just as vulnerable to  developing ailments of the typically older generations too – so chat with your cardiologist and find out what kind of exercise and eating plan would be best for you and your own individual situation. Whatever your ability or mobility, there’s ways and means to help prepare your body against future conditions that may be completely separate from your heart.

 

I hope that the common themes on which I’ve reported back from the ECHG conference has been of some interest and help – but of course, everyone has their own journey with their heart condition, and people can experience a whole range of emotions at different times. The Somerville Foundation has a lot of different sources of support, so if you feel like chatting, or getting some further information – please don’t be a stranger. After all, a problem shared is a problem halved!

For more information, advice and support:

The Somerville Foundation Helpline: 0800 854 759 / helpline@thesf.org.uk

Anne Crump, Mental Health Support Worker: 0208 240 1165

A range of downloadable leaflets are available at our website www.thesf.org.uk

Eurohearts: A Volunteer’s Perspective

November 23, 2012

Having never been to a Eurohearts conference before I didn’t know what to expect.

I’m on the international committee for The Somerville Foundation and as part of my voluntary role; I spend a lot of time communicating with various organisations across Europe. It’s been great developing these relationships but there is only so much you can learn about an organisation and those who represent it through e-mail. It was good meeting and talking to the people I had been in touch with and talking to them about what they’ve worked on, what they do and how they promote the services their respected organisations offer.

The week offered a variety of lectures and workshops spanning a broad range of subjects, which included different forms of CHD, transition and pregnancy. . I enjoyed the lectures and found them interesting. I found learning about how the shape and formation of a CHD heart can differ from a “normal” one very interesting. I was glad to hear about how my form of heart disease can affect other organs. I’d heard this before but never really understood why. It was good to find out more information, and over and above all, I was happy to hear how relatively common my form of CHD can be – it made me realise I wasn’t the only one living with this form of CHD.

I attended workshops on transitions and communication. The communication one was given by Nurse Charlotte E. Anderson. I got know about the way the Danish Heart Federation works and took part in a few exercises. One the services is similar to one at The Somerville Foundation that is simply to listen to people. All too often people feel they have no one to talk to so it was good to know that The Somerville Foundation is not the only organisation to do this.

I had a very lengthy discussion with cardiologist Dr. Kirsten Boisen from Denmark, who gave the best transition workshop I’ve ever attended. Dr.Boisen’s workshop was very clear and the exercises were a great way for attendees to interact with each other. She spoke with humour and knowledge. I learned about the clinics that she runs and how treatment is administered. The main thing that impressed me however was her attitude. She seemed very dedicated and in tune with the services that the Danish healthcare provide. It was also nice that she stayed to talk to the delegates and to spend time looking at the posters that each organisation had designed and displayed.

This was also a chance to represent The Somerville Foundation and talk to other GUCH’s about the how the charity has helped me and the services I have benefited from. It was great to talk other people who have benefited from their respected organisations, and to learn from what they do and how they do it.

Our Danish hosts were fantastic – friendly, understanding and very attentive to everyone’s needs. The day schedules were organised really well and in the evenings there was always a fun social event to get involved with and time to get to know other delegates.

The Eurohearts conference was not just about the lectures, workshops and activities. There was also a strong social aspect to the week. GUCH’s from across Europe had the chance to meet, share stories and experiences, and learn from one another. It was a great week and I’m really glad I got to go.
Peter Atwal.

New Website Coming October 20th!

October 8, 2012

I have some exciting news! This month we will be launching our brand new, super-duper website. Go to www.thesf.org.uk on 20th October 2012 and you will be able to use it.

There are some obvious changes – it looks and feels completely different from the old one. It is fresh and inviting and makes you want to discover what there is hidden beneath the surface.

Don’t worry if you can’t find the Message Board it has just been renamed as the Community Forum, and you will now find Publications under Help & Advice/Resources and GUCH News back issues and articles can be found under News.

Have a look around and let us know what you think. You can email your thoughts to feedback@thesf.org.uk.

Happy surfing!

Gil Shares her thoughts As a Volunteer (Updated)

October 3, 2012

I have been involved with The Somerville Foundation (formerly GUCH PA) since the Newcastle Annual Conference several years ago. I had used the forum before that and wanted to get more involved so started going to events. I helped out at events but was never formally a volunteer, but that all changed after the Birmingham CHD awareness walk when volunteers helping out there suggested that I should formally become a volunteer and get the forms filled in. The timing of the conversation was ideal as I had been considering it anyhow but wasn’t sure if I was what GUCH PA were looking for. The rest they say is history! I soon got the ball rolling after chatting to the Volunteer Manager. Since then I have helped out at events, sometimes helped to organize the events itself. I am a moderator on the Facebook page and more recently the Community Forum. That doesn’t mean I’m IT literate – that is certainly not the case! I also sit on the GIG – GUCH International Group.

Moderating to some seems easy, but it’s a case of striking the balance as you want to be supportive, whilst realistic, and work within the organisation’s policies. It can be difficult moderating people’s posts but we always send you a message as to why and, if it helps to know, I have also been moderated in the past!

I particularly like assisting at and organising events as I am quite an organised person, due to my working environment, and it’s great to see your hard work come to a good conclusion and everyone benefiting from that.

As part of my role on the GIG I attend various meetings through the year, focusing on the direction we are going in, the achievements of the group thus far and how to build on that. We also attend events such as European Congenital Heart Disease Organisation(ECHDO) meetings, psychology meetings about congenital heart disease (CHD) and many more. It is helpful for members to attend these seminars and provide feedback to The Somerville Foundation so that they can use the information to have a bigger voice in the world of CHD.

I thoroughly enjoy my role as a volunteer and I am glad I got involved. Personally I have met some fabulous people along the way. I hope in some way I have helped both The Somerville Foundation and its members. I encourage others who are reading this who think ‘I don’t know if that’s for me’ to give it a go, get in touch with the Volunteer Manager and see what roles are available. Not all are hugely time consuming. I am certainly happy to speak to anyone considering volunteering about my experiences and to answer any questions.

Gill M.

Join Us!!

August 29, 2012
My last post for this blog considered being a “good patient” after learning pretty early on to tolerate whatever managing my heart condition involved.  Besides developing a keen stoicism living with a health condition from birth has had a wider impact.  The combined impact of discrimination, however subtle, being dependent on others to survive and feeling a bit different to the “norm” has lead to a sense of disempowerment about my health.  When we are disempowered we lose our voice. And until recently I pretty much didn’t talk about my heart condition unless absolutely necessary.  I did not feel comfortable questioning my care.  Because I know I am lucky to be here at all.  I don’t think this is apathy.  It is a fear of seeming ungrateful combined with a sense of not having any influence anyway.
 
However, over the last couple of years I have encountered various serious difficulties with my care. Including problems at my local A&E, with GPs and with gaining a referral to the specialist service.  This has caused unnecessary stress and heartache for my family when my heart problems were already providing quite enough to cope with.  I felt pretty angry about this.  And I realized that I am allowed to feel this anger.  So, I felt I had to speak out about the difficulties that adult congenital heart patients face regarding our care.  Not in an unhelpful, finger pointing for the sake of it kind of way but in a this needs sorted out so lets work together and make things better kind of way. 
 
It soon became apparent that one of the main issues in Scotland is the fact that we do not have National Standards for our Care.  We have been given various explanations for this.  But the simple fact is that England and Wales have had standards since 2006, which are undergoing a further review, and we still don’t. I believe that this further disempowers an already disempowered population.  We have no point of reference to back up our voice when we do not receive the care we need.  No guidance to inform our GPs, A&E doctors or other allied health professionals.  It feels risky and uncertain.  
 
So, we have submitted a petition to the Scottish Parliament about this.  Because I now realize that being grateful about the care we receive does not mean that we need to stay silent about the difficulties we encounter.  
 
Please sign our petition.  Anyone from any country can sign it.  And the more that sign it the louder our collective voice 

A Face For Radio

August 5, 2012

Effective communication is absolutely vital, especially when it comes to charity work. Whether we are directly involved in the charity or simply supporters of it, we should recognise the importance of how we communicate our message.

I have been following GUCH PA for a number of years, as I have a congenital heart defect that can play havoc with my heart rhythm. And I have, like many GUCHs, attended hospital more than most people my age and this is how I came to be involved in hospital radio. I also had numerous people telling me I had a perfect face for radio!

It is up to us as GUCH patients to tell the rest of the world about our hopes and fears and to raise awareness of our charity. Hospital radio is a great way to communicate and it’s a natural fit to promote a healthcare-related topic..

Most hospital radio stations, which are run by volunteers on a charitable basis, are held in high regard in the community in which they serve. The potential audience of a hospital radio station varies depending on the location, the time of day, type of license held by the station and size of the hospital.

My station is Radio Grapevine in Livingston, Scotland. It serves a medium-sized hospital with a Coronary Care Unit so it’s a great communication tool. It also broadcasts via the internet, allowing our message to reach an even wider audience.

With the agreement of GUCH PA, I produced a Public Service Announcement (PSA) explaining the purpose and scope of GUCH PA, which now plays regularly on Radio Grapevine 24/7. Consequently, a huge range of people in my community can hear about the good work GUCH PA does for adults with congenital heart conditions. Many listeners may have heart conditions themselves so we not only promote ourselves within a healthcare environment but we may also gain some new supporters.

My goal is to develop the PSA to be played in hospital radio stations across the UK. This will likely take a combination of hard work, determination and a little bit of luck, but I’m used to it – I’m a GUCH.

Check out our Youtube channel to hear David’s Public Service Announcement:

The Good Patient

June 25, 2012

Like many people who have faced hospitalisation and health difficulties from birth I am often told how brave and courageous I am. Although I appreciate this I am never quite sure if it’s an observation, expectation or demand. The truth is that often I don’t feel very brave. In fact, I suspect I am a bit of a fraud. I certainly didn’t feel very brave when, as a child, I was wheeled to theatre and my mum only got to come as far as the big, plastic swinging doors. On such occasions, I’d just kind of freeze in my scratchy theatre gown as I lay on the cold hard trolley. Nurses in blue scrubs tried to distract me with gentle humour as they rolled me away from my mum. So, sometimes I suspect that I have just developed a fine ability to keep very still and quiet rather than being at all brave.

Of course, it is entirely sensible to stay still when a nurse needs to give you an injection, insert a line or when you are having an X-ray done, stitches removed or a catheter inserted. An ECG like an ECHO, is quicker and easier when you stay calm and quiet. As a kid such ‘good behaviour’ is often rewarded with a smiley sticker. Protesting on the other hand is deemed the mark of a ‘spoilt brat’ playing up because they think they deserve “special treatment” (I tried this approach out a couple of times early on and it just prolonged the whole ordeal). So I think I learnt to be a ‘good patient’ pretty early because I actually didn’t have any other choice. It just made a difficult situation easier for everyone. But that doesn’t mean that going through these procedures is somehow easier or that I’m used to it.

In fact, over the years I have collected an interesting catalogue of unfortunate mishaps to heighten my anxieties. This is why it matters that those responsible for my care appreciate that behind my stoicism hides a lifetime of fears and that treating me with compassionate understanding just makes the whole business a lot more bearable. I don’t want special treatment, honestly. I just want to be understood.