Skip to content

Have You Heard…..

June 24, 2012

Have you heard…

…that GUCH PA has changed its name to The Somerville Foundation? I hope so, as it means our communications are working. If not, where have you been? Don’t worry if you feel you’ve missed out on something as I’m going to keep you updated as much as I can.

Rebranding the charity is not just a question of changing the name and logo. A lot of time and research (pro-bono) has gone into making sure we are doing the right thing for the people it will affect most, GUCH patients.

We want to continue to provide the services you use and to introduce new ones as time goes on. It would be good to hear what services you feel we could be providing. Contact admin@thesf.org.uk with any suggestions (please keep them polite!).

As you know, not much in life these days is free and that includes the services we provide. Although the services are free to you, they still cost money to run. With this in mind we need to have a continual stream of money coming into the charity so that we can keep going.

Up to now we have relied on the generosity of donations and fundraising events from individuals and funding from organisations such as BHF, Comic Relief and Clintons. Following the demise of Clintons last month we must look to other avenues for funding and Corporate Fundraising is one of the areas we will be cultivating. If you work for a company that promotes a ‘Charity of the Year’ (or even month), please let us know. Additionally if your organisation offers ‘Match Funding’ we would like to hear about it.

On a final note, we’re not the only ones blogging about The Somerville Foundation. Check out Bookmouse’s blog.

Take care, Helen x

Young People’s Bowling event, London, June 2012

June 18, 2012

A fun time had by all!

This slideshow requires JavaScript.

Reliving The Poole Social

May 31, 2012

Photo Credit Mr B T Payne

This years social at the The Haven Hotel from 25th – 26th May  was attended by approx. 40 people.

 We were blessed by fantastic weather for our stay there.

The Hotel was excellent and boasted a spa, indoor and outdoor pool and my personal favorite a hot tub. This had two speeds, normal and very bubbly. When on very bubbly one rather felt like a little spud bopping around in a saucepan.

There was access to the beach from the hotel and the sand was beautifully soft.

We arrived Friday evening and settled in to our comfortable room, we were delighted to find we had a sea view – no need for my sounds of the sea cd to fall asleep tonight I had the real thing!

We had a wonderful dinner – After dinner another GUCH, Maree, and her fiancé  Andrew, who both live in nearby Bournemouth, joined us for an evening of relaxing in the Hotel Bar and chatting to friends old and new.

One thing that struck me is there were a lot of “new faces” at this Social Meet, which is wonderful. There was also a lot of familiar faces there and I would like to think those of us who have been before took time out to chat to the new people and make some new friends that will last a life time.

On Saturday following a smashing breakfast we met up and left by ferry to Brownsea Island – Please read this link re this interesting Island – http://www.nationaltrust.org.uk/brownsea-island/history/

We had the choice of a buggy tour (for those of us with mobility problems) or a guided walk – We had a wonderful tour guide and learnt some very interesting facts about this Island.

We took lunch at the café on the Island and were joined by a Peacock who came to see what tidbits he could be fed.

Our journey back by ferry to the Hotel was followed by some free time to chill and relax before Dinner – which Mark and I spent exploring the beach and availing of the indoor and outdoor pool and of course the lovely hot tub.

Our meal on Saturday was even better than the night before and again was followed by an evening relaxing with friends old and new in the hotel bar.

We joined together for breakfast on the Sunday morning and many of us swapped contact details with new friends made before departing for home or last-minute exploration of the area. Mark and I took this chance to go to Poole and visit the Poole Pottery shop.

I personally feel these weekends are so important to us as they are an opportunity to relax and unwind catch up with old friends and make new ones. The networking and support that happens during these weekends is vital.

I have been fortunate enough to attend a few GUCH Social weekends and I have to say this weekend was very well organised and the hotel picked had good access for those with mobility issues and where there were obstacles to disabilities the staff did their best to help. The GUCH team that came to the hotel John, Anne and Victoria were all very friendly, welcoming and helpful to all who came.

If you have never attended one of these weekends and feel you would like to but might be worried that you would feel isolated by not knowing anyone there – please do not let that stop you I know several of us who would welcome the opportunity to make new friends with you.

If some of you would like to attend but feel that financially this might be difficult – please speak to the GUCH office.

If those of you feel your health might pose problems in attending – again please speak with the GUCH team and there are also non GUCH’s  in partners and carers of GUCH’s who attend who are more than happy to help  if needed.

My thanks to the Admin team at GUCH for all their back stage hard work in organising the social meet also

Now I am back to reality, and there is a large suitcase to unpack and washing to sort out !

By Samantha Price

The Somerville Foundation

May 25, 2012

GUCHs are growing up and so is the charity.

Exciting new name change takes effect from June 1st 2012

18 years ago Dr Jane Somerville (now Prof of course) was the driving force behind the creation of the GUCH Patients Association.

The GUCH Patients Association has for the last 18 years made great advances in the empowering of GUCHs to be expert patients and live fulfilled lives. Now the charity, at the age of 18, has grown into something quite different alongside the GUCHs themselves.

Now we are able to support all GUCHs from teenage years through into middle and old age, and we need to effectively communicate with them all.  Along with our social and educational GUCH activities a very important function is to represent  GUCHs at the Department of Health, National Health Service and industry bodies. Lobbying is very much part of the function to ensure the correct services are going be there for the rapidly increasing numbers of GUCHs.

All this costs money and therefore we increasingly need to engage and communicate with those who might consider supporting us financially.  It is a simple fact that money is necessary to be able to provide the services we perform.

For some months now the trustees have been considering how to get our message across effectively to the non-GUCH world and it became apparent that the name of the charity was not helping us.  The issue was whether to keep a name that hindered us in raising our profile to those not already familiar with GUCH.  After long debate and the consideration of many possible alternatives it was decided that the only sensible thing to do would be to change the name of the charity but maintain the use of the term GUCH at the same time.

To change the name is the only sensible option open to us and I believe we have chosen a name with meaning to us based on where the charity came from and that the non-GUCH world will receive positively, sounding serious and substantial.

The name: The Somerville Foundation

Somerville Foundation Logo

The Somerville Foundation Logo

It refers to the foundation of the charity and brings with it an air of gravitas, even to those who know nothing about us.  We will remain the Grown Up Congenital Heart patients association but that will become the description of what we do, specially to those that know of us.

With this action I believe we have bridged the desires of those who would not want to lose the name GUCH, which we are not dropping, with the ability to communicate more effectively to the much wider audience we now must reach.

Michael Cumper

Coming out as a GUCH

May 24, 2012

Since my late teens I mostly tried to forget that I was born with a heart condition.  During my childhood,  with a set rate pacemaker restricting my heart rate to 70, it was kind of difficult to forget.  I had never let it define me but at times it was obvious (e.g. when I couldn’t skip or jump on a trampoline in case I dislodged another pacing lead or  turned a panic inducing shade of blue).  The frequent trips to hospital so that my “cardiac family” could ponder over the settings of my pacemaker, trying to adjust them to eliminate unpredicted symptoms such as “dizziness”  also reminded me that I was different to other kids.  As did the many surgeries I needed to replace the unreliable early pacemakers of those pioneering years.

 

However, as a teenager it became kind of criminal to be “different” so I put rather a lot of effort into proving I was just like everyone else.  Fortunately, a new “variable rate” pacemaker and surgery to fix an ASD helped my deception by enabling me to be much more active than before.  As did carefully chosen clothes that hid my scars (thick straps a must).   Sure, some people knew I had a pacemaker and it was obvious when I needed surgery to replace it.  But I never advertised this fact and shrugged it off as really just not a big deal.  And until last year I kind of believed it myself.  This was reinforced by the medical care I’d received since becoming an adult which was no longer specialized leading me to assume or perhaps hope that I must no longer need such care.  So I did lots of “normal” things, and I am incredibly grateful I was able to, such as going to Uni, going on lots of holidays, getting married and having my son.

 

But “pretending” to be “normal” can be quite an exhausting business in itself.  In my early thirties I started to “reach out” to others who could understand what it is like to grow up with a heart condition.  Social networking has been a fantastic way to make these tentative steps.  Gradually, I feel that I have come to accept this part of me.  I still don’t feel the need to advertise my heart condition but I don’t feel the need to hide it anymore either.  I am a “normal” person.  Just one that happened to be born with a heart condition.

 

When the leads to my 8th pacemaker broke last year and nobody really seemed to know what to do with me, because I was pretty much running out of space for new ones, I was glad of the support of people who really understood what this meant.  Following a carefully planned and risky four hour operation by a Cardiothoracic surgeon I also understood that I will always need specialist care.  Thankfully, the cardiology profession seem to be becoming increasingly aware of the need for specialist input for the GUCH population too. I am enjoying being involved in various efforts to promote this awareness and improve the standards of our care.  In fact, I am now quite proud of living with a heart condition. I have even started wearing tops with thin straps.

BW,

Liza

Life as a GUCH PA Administrator

May 22, 2012

Life as a GUCH PA Administrator is a pretty full one from where I’m sitting but do any of you know what we do?  Well to start with there are 3 of us working in the GUCH PA office in Ipswich, Pippa, Fiona and I (Helen).  We look after our members by doing a huge number of activities, mainly but not limited to the following:

• We answer your phone calls, emails and post
• We organise events such as weekends away, patient information days and conferences, as well as make sure we take part in events that help to improve our services and to promote the charity
• We manage the accounts, pay bills, collect sponsorship and donations
• We manage subscriptions to GUCH News each quarter, sending them to you and to the GUCH units at hospitals around the UK
• And much more

Follow this blog by email (sign up over on the right) and you can find out more about what we do at GUCH PA and who does it.

Take care, Helen x

GUCH’s Proof Reader Claire Shares her Thoughts

May 2, 2012

I’ve been a volunteer proof-reader for GUCH for over three years now. I didn’t realise it had been quite that long! I decided to volunteer in 2008, a few months after I had my second lot of heart surgery, at the age of 30 (I had my first surgery when I was three).  My motives for volunteering were somewhat selfish, as I was hoping that, as well as doing something useful, I would also be able to meet other people who may have had similar experiences to me. I’d been slightly reluctant to get involved with GUCH before, because before my heart deteriorated and I had my operation I tended to think that I couldn’t really identify with the people I read about in the GUCH News, because my life wasn’t affected by my condition to such an extent as theirs. I suspect that some denial was involved here, and also that I didn’t want to make my heart condition a bigger part of my life than it already was.

Since having surgery (and subsequently having a pacemaker fitted), I’ve found that I can’t really avoid my heart condition anymore. I’m ready to admit that it does affect me, physically, emotionally and mentally and now I find that I actually want to be able to talk to people who share similar experiences, to have their support and to try and support them in turn – even if only in an indirect way, through proof-reading the magazine.

I enjoy proof-reading the articles for GUCH News – I often find that I learn a lot along the way! Volunteering has also, as I’d hoped, been a good way to meet other people with heart conditions. I attended the volunteers training day when I first started back in 2008, and that gave me the confidence to attend other GUCH events, like the National Conferences in Manchester (2010) and Cardiff (2010). So, in short, I would recommend volunteering!