Forthcoming Events
When GUCH was offered the opportunity to hold an Information Day at Derriford Hospital in Plymouth, little did we realise what a huge response we would get. By the morning of the 19th May we had 90 people registered to attend, many more than we imagined.
Those numbers were mainly due to the hard work of Dr Andrew Marshall, the Consultant GUCH Cardiologist at Derriford, who had supported both Beth Greenaway and me throughout the organisational process. He had issued application forms to all his patients, as well as inviting the various medics to attend and lead sessions. Without his help the day could not have gone ahead.
Mark Turner from Bristol Royal Infirmary talked about 'What was new in GUCH medicine'. He used the technology available in the lecture theatre to show graphic pictures of how balloons, stents and occluders are inserted, with before and after pictures showing the devices in place. Considering the vast majority of us only ever see the ceiling during such procedures, it was great to get a running commentary and see the procedure on screen. Dr Turner's explanations were easy to follow, and, with the help of the video he showed us, most interesting.
Dr Marshall followed with the How's and Why's of Diagnostic Tests, which included samples of pacemakers, ICDs and valves being passed through the assembled audience. Linda Zacharkiw, one of his Cardiac Team at Derriford, took us through the scanning process and what to expect when having an echo. She pointed out that when a scan is carried out, the technician expects everything to be in the usual place, but with GUCHs you have to expect the unexpected.
Jenny Foren, the Cardiac Nurse Counsellor had asked a teenage patient and a parent to help her lead her session on transition. This made it interesting, as we got to hear views from both sides when it came to letting go, and ensuring that young people take responsibility for their own health. She also emphasised that everyone has the right to patient confidentiality once they get to 16 years of age.
After a very nice relaxed lunch, Dr Ring, a Consultant Radiologist from Plymouth, spoke about MRI scanning. He put a lot of those assembled at ease with his reassurances that it was possible to have someone in the room with you if you were claustrophobic. He showed the amazing results which could be achieved from an MRI scan which, unlike x-rays, did not use radiation. He also listed all those groups of people who for various reasons could not have an MRI scan.
Mervyn Holden from GML Financial Services Ltd spoke to us about the benefits of using Independent Financial Advisors to help with insurance issues. He advised us how he would approach the search for suitable insurance policies for GUCHs and took several questions from the floor during the session. It seems possible that the main reason for many of the insurance problems we encounter, is that the Cardiac Specialists used by the insurance companies to help them risk assess their policies, are inexperienced in GUCH specific medicine. There are companies who will insure GUCHs, but as everyone is an individual, we should use an Independent Financial Advisor and not a known insurance company.
Dr Marshall ended the sessions by talking about lifestyle issues. They included the necessity for having blood tests before antibiotics are given, if you approach your GP with flu-like symptoms and endocarditis is a possibility. The vast majority, whilst aware of the symptoms, did not realise a blood test was necessary to confirm the diagnosis. He went on to discuss the perils of body piercing and tattoos, the importance of contraception, and suitable forms of exercise.
The whole day was a resounding success, and hopefully will be remembered as one of the best attended events GUCH has seen so far. Beth and I received many positive comments, which made us feel that all the hard work that we and Dr Marshall put in to make the day the success was worth it.
Pam Bugler