Forthcoming Events
Elizabeth Connolly.
What do you think of when someone mentions 14th February? Valentine's Day? Romance? Flowers? Hearts, perhaps...? Well, 14th February is also International Congenital Heart Awareness Day so perhaps you wouldn't be too far off the mark.
Last year, it was suggested by GUCHs that GUCH PA should organise something for Congenital Heart Awareness Day 2007, so that we could mark the day as the children's charities and the American equivalent of GUCH do. A small team pulled together some of the ideas and created two main strands for the day: an awareness element based around the GUCH clinics and also a social event where GUCHs could meet and share their experiences.
The GUCH Volunteers made clinic visits the length and breadth of the UK, from Plymouth to Glasgow. GUCHs went in with the specially designed leaflets, balloons and told GUCHs about what we, as an organisation, can provide to support them.
Even at some of the big centres, where we thought we were well known, our new posters and the fact that we were actually there in person caught the interest of people who'd never heard of us. A lot were interested in our website, so we can look forward to a lot more people visiting and signing up for the message boards.
The highlight of the social event was a walk arranged in central Birmingham (in the "heart" of England) to mark the day: raising awareness, exploring the city and offering the chance for GUCH patients to meet each other and socialise.
Birmingham Walk
On Saturday 17th February a motley band of GUCH patients, staff, family and friends met up at St Philip's Cathedral for an exploration of the city of Birmingham. The weather was kind to us and though it was a little chilly there was no rain or snow. All in all we had 20 people walking around the streets in a range of bright yellow tabards, holding GUCH balloons -filled with Helium at Clinton's - and generally enjoying the sights of Birmingham. The outfits may not have been flattering but were certainly excellent for raising awareness, with the balloons proving surprisingly popular with some Goth teenagers we encountered.
We split into two groups and headed off for our walks. One group took a shorter walk around the central area, calling at Symphony Hall, Centenary Square, stopping for a coffee and admiring the fine architecture of Birmingham's
industrial heyday. The other group headed out on a longer tour, including an exploration of the canals, locks and the Jewellery quarter, not to mention showing an interest in graveyard catacombs. Those people who didn't know Birmingham were favourably impressed with the place.
At the end of the walks we all returned to the Priory Rooms on Bull Street, where a very welcome buffet lunch was awaiting us. Plenty of talking - and eating - went on and it was particularly good to meet some new people who hadn't been to a GUCH event before.
As usual with any GUCH event, but particularly for this co-ordinated series of events in a short period of time, many people gave up hours of their time to organise and get to the right place at the right time, but particular mention
has to go to Paul Willgoss, without whose inspiration and hard work we wouldn't have had an event at all, and to all those who trekked across the country to join us in Birmingham on a Saturday.
Anyone with ideas for next year's event please contact the office as suggestions are actively being sought.
Elizabeth Connolly
The Heart Hospital
Finally the day arrived, after various GUCHs around the country had spent many an hour arranging several different events, either to take place on the day or at some point over the next seven days, some of which you can read about now. The one in particular that I was able to take part in was an awareness day at the Heart Hospital. But luckily for all concerned, I was accompanied by John Richardson, GUCH National Director, Richard Bird, Chairman of Mancom,
Jonathan Upton, Contact for Sussex, and my husband Steven, who took many photos of the day for us.
I felt that being there to promote GUCH was quite successful, as it was on outpatient day, and several patients and partners/parents came to have a chat with us, as well as various members of hospital staff. Hopefully this will help to spread the word and of GUCH and our aims.
Please read on to find more out about the fun of the day.
Judith Parker
Plymouth
Mondays are always busy at the Outpatients clinic at Derriford Hospital in Plymouth as Dr Marshall has his (GUCH) clinic that day, as do several other Consultants. So Beth Greenaway and I chose that day rather than Wednesday 14th February, which is much quieter, to stand in the Out-Patients foyer to hand out cards advertising Congenital Heart Awareness Day to anyone passing by.
Having personally approached the Sister in charge of Out-Patients Department two weeks before, we had been given use of one of the main notice boards in the Department for the whole week, as well as a temporary one in the foyer.
This of course meant that we had to be up nice and early on the day in order to ensure we were ready as soon as the Out-Patients Department opened at 8.30am. (We decided after struggling to get the drawing pins into what appeared to be a solid board that we need to strengthen our thumbs before next year!) Having two areas within the Department was really good, as if anyone wanted to know about GUCH PA they didn't have to ask us directly if they didn't want to.
On the whole the day was very successful, and we were very glad to be able to sit down. It is amazing how tired you can get handing out cards! The day enabled us not only to make people aware of what congenital heart disease is, but to meet other GUCHs at the same time. We even managed to distribute some of the cards to other Departments within the hospital who placed them on their reception desks. We were also told that the next time we need any promotional space, that it could be made available to us.
Pam Bugler
Visit to the Brompton Hospital - 23 February 2007
I visited the Royal Brompton Hospital to raise awareness of GUCH Patients Association as part of the events organised around Congenital Heart Awareness Day.
I was there for about three and a half hours and spoke to approximately 25 patients and their families. The clinic was less busy than I expected, but the staff told me that they had recently cut the numbers attending from 50 to 32 to avoid such long waiting times.
About 25% of the patients I spoke to had heard of GUCH, and received copies of GUCH News, about which they were very positive. This was probably more than I expected, but historically, the Brompton has always had a strong relationship with GUCH PA. The members of staff that I met were very welcoming and spent some time chatting to me. They were keen to receive copies of GUCH News that they could leave in the waiting area, and also larger versions of the posters I had.
On the whole, I think the visit was worthwhile and helped to raise the profile of GUCH PA. I would certainly support at least annual visits to specialist clinics to continue to raise awareness of GUCH and further develop relationships with the staff.
Shelagh Eaton