14th Annual Conference and AGM, May 2005
Sunday 8 May 2005, Gosforth Park, Newcastle
Andy Taylor, Chair of the North East Group, our hosts, welcomed us all to Newcastle.
Ronnie Gourley, our Chairman, opened the conference and told us that Yvonne Norton was unable to attend as she was unwell and asked those who knew her to sign a card.
Our first speaker was Dr Spickett, a Consultant Immunologist from the Royal Victoria Hospital in Newcastle. His talk was focused on diagnosis, monitoring of the disease and side effects and some of the complications that we may get. He told us how the diagnosis of lupus was about clinical findings which included blood and urine tests. It was interesting to hear about the different types of tests that had probably been performed on my blood and urine over the years and certainly put in to context why it sometimes seemed as though my arm was being drained of blood! He concluded that blood tests were necessary and that they can help to control lupus. We should ask our doctors what and why tests are being undertaken and to realise that some of the tests may take some time to get the results. He also asked us to think about the team of people that work behind the scenes of our hospitals when we go to a clinic.
Dr Griffiths, a Consultant Rheumatologist at the Freeman Hospital, then spoke. Lupus appears in 1: 2,000 Europeans, 1 in 900 Asians and 1 in 400 Afro-Caribbeans. She spoke about what our doctors look for when we attend a clinic and how they assess our quality of life, disease activity and any damage that has been done. They will use questions to help find out which areas they should focus on and will check our blood and urine tests as well as our blood pressure measurements. There are other tests and examinations that can be undertaken should they feel necessary such as x-rays, scans, biopsies, etc. The aim of our treatment should be to improve the quality of our life and to suppress the disease. We have a part to play in our treatment as well including pacing ourselves, avoiding sunlight, using sunscreen and having a good, healthy lifestyle. Dr Griffiths conclusion was that the prognosis for people with lupus has improved greatly, that there is greater awareness and this means that diagnosis and treatment usually happens earlier than in the past.
Our final medical speaker for the morning session was Dr Meggitt a Consultant Dermatologist also from the Royal Victoria Hospital in Newcastle. He gave an excellent talk about the skin problems associated with lupus and certainly helped me understand the odd rash, patch of eczema I've had over the years as probably another lupus symptom! Skin problems are common in people with lupus. Skin disease is often seen as secondary and many patients never see a dermatologist. We need to recognise the impact that skin disease can have on people and the stigma associated with it. He urged us all to use sunscreen and to pay attention to the UVA star rating as well as the UVB sun protection factor (SPF) and we should be looking at 4 star protection. Sunscreen should be used from March to October, frequently applied and that you need to use more than you think!
The AGM took place before lunch. Ronnie Gourley told us how Brian Hanner had now retired and passed on the baton to Chris Maker. The focus should be on supporting our members and educating people, including doctors, about lupus. Tony Rance presented the accounts and these were published in time for the meeting and in our Conference Packs. Chris Maker then delivered his first Director's Report. He told us about the new Centre of Excellence in Birmingham and hoped that there would be many more to follow. The Right Honourable Dr Gilbert has become a new Patron of LUPUS UK. Janet Dean MP had secured an adjournment debate and an early day motion in the House of Commons. A cross party group in the Scottish Parliament has also been formed. The first Go That Extra Mile raised £50,000 and raised awareness and had media interest with the very obvious t-shirts! Chris paid tribute to Brian Hanner and the work that he had done for LUPUS UK. He also thanked the staff of the National Office and finally thanked the members, the regional group committees and the contacts for all that they have done for LUPUS UK too. Finally the Auditors were appointed.
A question and answer session to those assembled on stage (Ronnie, Chris, Tony and Jack Hirst (Secretary) then took place. There were questions regarding additional members of staff at National Office, why some funds in the accounts were restricted, a potential source of help for fundraising, the website, whether people with lupus should be referred to as sufferers or not and what plans Chris had for LUPUS UK.
Lunch followed and the hotel provided us with an excellent choice of hot and cold food as well as delicious desserts! There was a lot of discussion around the lunch tables, swapping stories and discussing treatments. Delegates were very impressed with our speakers and many had learnt things about their lupus they had previously not known.
After lunch, the charismatic Stewart McFarlane, Patron of the North East Group made sure we were all awake after our big lunch by welcoming us to the North East and explaining why he was involved with the work of LUPUS UK and asked us all to ask him if there was anything we thought he could do to help.
Dr Graham Hughes then spoke. Sadly, for us, Dr Hughes is retiring from the NHS this year and talked about his 35 years in lupus. On his journey to Newcastle he worked out that he had seen approximately 77,000 people with lupus! He talked passionately about his career and the opportunity he had been given to learn about lupus and his work on the antiphospholipid syndrome. Cheryl Marcus, the founder of organised support for people with lupus, presented Dr Hughes with a gift from LUPUS UK for all the work that he had undertaken, and for his support to the charity. She spoke with great fondness and told us how Dr Hughes had the interesting acclaim to be the only living physician with a medical condition named after him - Hughes Syndrome (antiphospholipid syndrome).
The panel of Drs Griffiths, Hughes, Meggitt and Spickett formed our medical panel and there were lots of questions from the floor ranging from why some doctors suggested coming off plaquenil in the winter to zero negative diagnosis via when is the right time to test for lupus and extreme reactions to insect bites. The final question was "If LUPUS UK won the Lottery what should we do with it?" The answers included setting up a lupus clinic in every district general hospital, undertaking clinical trials for biological agents for disease processes, a national network for skin disease to fully understand what is useful and multi-disciplinary clinics in dedicated areas to manage the disease properly.
The conference entertainment was performed by the High Level Ranters, a group from the North East, who played tunes originating from the area including the coal industry. There was plenty of toe tapping and some people joined in to the more well known tunes such as "When the boat comes in".
The raffle and a closing speech by Ronnie encouraging people to attend the next conference in Ashford, Kent, which will be his last, closed the conference. Slowly people started to make their way home via car, train and aeroplane. The end to another conference came all too quickly but from which I left knowing so much more about lupus and feeling more prepared for what it might throw at me next!
Jane Robinson - Chair, Cambridgeshire Lupus Group
Our thanks to Jane for this informative report on this year's Conference and AGM