GUCH Patient Representative Group

Our role is to represent the views of GUCH patients and help shape the future of our Association. Our representatives are all patients and are elected annually by GUCH patients.

Who is the Patient Representative Group?

Beth Greenaway (Chairman)

I'm Beth Greenaway and I am 35 years old. I live in a small cottage in the beautiful Cornish countryside, just 6 miles away from my childhood home where my Mum still lives. I returned to Cornwall five years ago, after an eight year stint living and working in Florida. After summers like the one we have just had I definitely question the reasoning behind that relocation! I am extremely fortunate to be one of the more active GUCH's (in spite of a valve replacement two years ago), and enjoy all forms of exercise, especially swimming, cycling and running. I am also proud to be the vice-chairman of the GUCH walking club, which is increasing in popularity with its gradual and understanding approach to GUCH's and exercise capacity. Like so many, I first heard of GUCH when my health was at an all time low about four years ago years ago, but it was not until 2005 that I attended my first GUCH event (the National Conference in Southampton). I have been involved in quite a number of GUCH related activities since, and feel truly at home in this friendly and understanding community. Being a member of the PRG is giving me the opportunity to give back to the organisation and people who supported me (often without knowing it) through some frustrating and difficult times.

Shelagh Eaton (Vice Chairman)

I'm Shelagh Eaton I am 47 years old and live near Leatherhead in Surrey with my husband, Dave, and two cats. I have a 19 year-old stepson, Tom, who visits us at weekends when he has nothing better to do!

I have worked for the NHS for just over 25 years, currently as Associate Director of Performance for Richmond and Twickenham Primary Care Trust. I am a patient representative on the Arrhythmia Task Group of the South West London Cardiac Network and have been elected as a prospective governor for the Royal Brompton and Harefield Foundation Trust as patient representative for the south east.

I have been a member of GUCH since its inception, having been a patient of Dr Jane Somerville for 25 years, but did not become an active member until about 3 years ago. Since then I have attended 3 GUCH weekends and was lucky enough to represent GUCH at the European Open Hearts Conference in Norway in 2006.

As a member of the PRG, I have been working on a patient survey that will hopefully be ready early in the New Year and will attempt to measure the level of patient satisfaction with the services provided by the GUCH specialist centres.

I don't have the time (or energy!) for many vices, but will admit to being a fan of Corrie and The Archers!

Rose Ellis

My name is Rose Ellis and I am 31 years old. I heard of GUCH originally about 9 years ago but its not until recently I have been able to get more involved. My last major op was back in 1999 when I had my aortic valve replace at the Heart hospital and i can honestly say its the best thing i ever did. I am lucky to be able to do most things that "normal" or non guch people do. Although having said that i have to admit I am one of lifes more lazy people! HAHA! I live at home with Mum and Dad and I have an older brother who lives near us with his wife and 2 children (and another on the way!) I work 3 days a week as a hotel receptionist at Holiday Inn. I have been there about 6 months now and love the job but am looking into alternative departments as being on my feet all day is not really conducive to my health!

The reason I decided to go for election is that I feel its important that we have a voice that is heard and things are achieved to make the lives of GUCHs' easier! I had a prime example of this recently when my local anticoagulation clinic closed and I took my arguments to both the local press and local MP who, although couldn't do an awful lot was absolutely superb and completely understood my case. I really am looking forward to working closely with you all and getting to know everyone and hope that this is not only productive but fun too (I am sure it will be)!!

Mike Hocking

I'm Mike Hocking. I'm 39 and from Wigan, Lancashire. I joined GUCH about 4 years ago. Before that I had never heard of the charity. I started to deteriorate and was searching the web for answers when I came across the GUCH website.

I am a mechanical design engineer and have just started a new job. I support Wigan Rugby League, and along with my 12 year old daughter (Sophie) I'm a season ticket holder.

I tried to get on the then mancom last year. I am a member of the walking club, and have volunteered to help at various past GUCH events. I am looking forward to the challenge of taking the charity forward.

Antony Horner (Secretary)

I'm Antony, I live in Yorkshire, with My Parents and two dogs (a Cocker Spaniel, and West Highland Terrier). I have Tetralogy of Fallot plus some other stuff. I've been involved with GUCH since 1998, when I met Judy Shedden at an open day at my local GUCH unit. Shortly after that I took over the running of the Associations website.

When I'm not GUCHin' I work as an IT tutor/manager for a local charity. In my spare time I enjoy reading, listening to music and photography.

Judith Parker (GUCH News Editor)

I originally became involved in the very early days of GUCH when my then consultant Prof Jane Somerville explained her plans for GUCH and asked her to join her first few volunteers. How could I refuse? I had known Jane since 1966, yes I am getting old, and she has saved my life on more than one occasion, it was the least that I could do to repay her.

I started as one of the first contacts groups for Buckinghamshire and I was also elected onto the first committee of Mancom, all those years ago. Since then I have always been relatively involved in GUCH, some years putting more into it than others, depending on my health. Although I had met Linda Wood in 2000 at the Oxford European Conference, it was not until 2003 when we shared a room at The Heart Hospital that I became involved in GUCH News. Firstly I would write the occasional piece for her. Soon after she asked me if I would be her assistant and then in early 2006 I became Editor. I love my position as Editor; I just hope that other people feel that I am doing a good enough job with GUCH News.

Now that I am at the age of 46, yes I am old compared to most of you, I no longer have a career. My last position was with the Police Force and I learned a lot from them, so behave yourselves, I will be watching you! I live in Buckinghamshire with my husband Steven and our two cats, who I am sure, are more badly behaved than children at times - that's all three of them! Still live is good and I will do my very best while working for GUCH PRG.

Kieran Sandwell

I'm Kieran Sandwell. I've been receiving Guch News since the start, but only got more involved in the last few years. I wish I had done so sooner because the support and friendship has really helped me. I wanted to be involved with the PRG to give something back to the charity and to help others. I'm married to Karen, who actively helps the charity too. Using her marketing experience we produced the posters that have been sent to all UK hospitals and we both work on the sales of GUCH merchendise. She also has gained a lot by being involved. I'm 36, live in Billericay in Essex. I'm about to embark on studying for the first time in 20 years. (Should be fun!) I am currently working for a waste recycling company but only until the end of the month as I've been made redundant. Hence the college move. Looking forward to the PRG meeting in October.

Paul Willgoss (Co-opted)

I'm basically the hired help, after serving on mancom for 10 years as a member, vice-chair and secretariat I decided it was time to let others debate and actively choose the direction of the organisation. The closest thing to a job description I currently I have is GOON - GUCH's Other Organisation Networker - which is sort of my unofficial job title, or GOON is just what Beth calls me... I've never quite worked out which;-)

In terms of who I network with, I represent GUCH with the Children's Heart Federation, the Heart Care Partnership (the patient wing of the British Cardiovascular Society) and the European Congenital Heart Group. I take my lead in each of these from the PRG, or occasionally use my initiatative and base it the general overview I get from coming to some, but not normally all, of your meetings.

I'm also responsible, with others, for the GUCH Walking Club. Which I can wax lyrical about....

Outside of GUCH I'm a career civil servant working for HSE as a scientist and/or administrator (depending on what lands on my desk on any given day). As well as the day job, work support me to take on some roles on disability and diversity, as I chair the HSE Disabled Staff network and sit on the National Centre for Diversity's Standards board. If you Google me (the delights of an unusual surname) you see some of the stuff I get up to, though my name isn't quite unusual enough - I've never met my alter ego who works for M&S!

Can I join the GUCH Patient Representative Group?

If you are a GUCH patient, then yes, we hold elections once a year usually in July or August, look out for a nomination form in the spring edition of GUCH News.