12th Annual Conference and AGM, May 2003
Report on the National Conference and AGM, 2003 Jane Robinson - Editor Cambridgeshire Lupus Group
I for one was delighted that the Cambridgeshire Group was hosting the 2003 Annual Conference and AGM, in hope that it would mean a day full of information and the opportunity to meet fellow "lupies" and renew acquaintances from the Contacts Course, my previous Conference and the National Office staff. Living in Peterborough, it was nice to have a national meeting so close. It was a beautiful spring morning (if a little early!) and Cambridge looked glorious with the University Arms Hotel quite splendid from across Parker's Piece.
The Conference was opened by the Cambridgeshire Group's Chair, Barbara Aldrich. She welcomed the delegates to the Conference and to Cambridge, a delightful city but with its rising traffic volumes, rising parking charges and rising bollards! The previous evening 60 delegates had attended a "Meet and Greet" session at the hotel that was enjoyed by all and many acquaintances were renewed.
The first speaker was Professor Sir Peter Lachmann. He gave a very informative and in depth talk about why lupus was called lupus and the early history of the disease. Auto immune diseases were the most common illness after the common infection and cancer. He talked about the genetics of lupus and mentioned the fact that the black population in South Africa have the lowest prevalence (amount of disease occurring in a population) but the same population, when moved to the West Indies, has the highest prevalence in the world. Sunlight and infection can make lupus worse and viral infections trigger lupus although there is no specific virus that has been identified.
Dr David Jayne, Consultant in Nephrology and Vasculititis at Addenbrooke's Hospital in Cambridge, gave a talk titled "What is New in the Treatment of Lupus". The "Old Way" of treatment is a newer immune suppressive called mycophenolate mofetil (MMF) that was described as the azathiaprine for the new millennium. It is hoped that this drug will go to an international trial in the near future. Stem Cell transplants are fashionable and being used to build up a destroyed immune system - the patient's own stem cells are harvested, the immune system is destroyed and then the patient receives an infusion of their own purified stem cells. In a recent study 2/3rds of patients thus treated were in "full remission" so it is relatively effective but 32% relapsed so it is not a cure. Dr Jayne felt this treatment did not have a role in the routine management of lupus, however it may provide a route for gene therapy. The "New Way" is a drug taken from cancer treatment, Rituximab, given as a drip (intravenously). There are two trials being undertaken in the UK and one in the US. Antibody levels do fall over time, and the disease has gone in all patients and they no longer need immune suppressants. It is hoped that a larger trial can be undertaken in the near future. We are bad at predicting the future for lupus patients and we need better tools for predicting which patients will respond to which drugs and there needs to be proper referral pathways and organisation of healthcare.
At this point Ronnie Gourley, who was chairing the conference, mentioned that studies undertaken in Belfast at the University of Ulster looking at the supplements of copper and fish oil in lupus found that copper had no benefit but fish oil can improve the well being of sufferers. The charity is ambivalent about alternative medicine and cautions members to inform their clinicians if they are planning to use them to ensure that there are no contraindications to their treatment.
Dr Max Field was our next speaker and not only gave up his Sunday to talk to the Conference and travelled down from Glasgow, but was "celebrating" his birthday! He was sung to and presented with a birthday cake in the shape of a butterfly! His children had also tampered with his presentation so that half way through his talk we were all reminded it was his birthday! Dr Field talked to us about Raynaud's Phenomenon. The symptoms of Raynaud's are extreme sensitivity to the cold (and moderate cold even in the summer) where the blood vessels contract too much - in the fingers, toes and sometimes the nose. Causal factors are the cold, caffeine and tobacco. Dr Field suggested that patients protect themselves, keeping their whole body warm, wearing hats, scarves, warm socks and fur lined boots. Wearing of socks and shoes indoors, use gloves to go into the freezer and use a baked potato wrapped in foil as a hand warmer! If you smoke ask for help to stop. Dr Field then went on to tell us about work that his department has been doing with SLE patients with the help of their local LUPUS UK group who purchased a lap top computer for them. This was linked up to a Laser Doppler Imaging machine to look at the delayed warming seen in SLE patients and administered treatments and analysed the affects. The conclusion of the work to date is that there is probably some damage to the lining cells on the inside of the blood vessel and they cannot tell if the muscle layer of the blood vessel is affected.
The next session was the LUPUS UK AGM. Summaries of the work LUPUS UK had done in 2002 were made by the Chairman, Ronnie Gourley and our Director, Brian Hanner - including the new Lupus Awareness Month, the All Party Parliamentary Group and the House of Commons Early Day Motion. 2003 is the Silver Jubilee of continued support for lupus patients. The National Office, regional groups, chairs and their committees, members and supporters and Janet Dean MP in setting up the APPG were all thanked for their efforts. Barbara Aldrich was also thanked for postponing her retirement as Chair for Cambridgeshire Group for the Conference. Tony Rance talked us through the accounts of the charity as reported and fully audited. In any other business we were told that the Charities Commission has approved LUPUS UK's amended constitution that has not changed in a significant way. Janet Dean had sent her apologies for the AGM and forwarded her best wishes to the delegates. She has also accepted the invitation to become a new National Patron for the charity.
Cheryl Marcus was then presented with the Award of Merit for her sterling service and was also presented with a silver watch. She in turn wanted to thank her husband Martin for his support, care and his own work as Treasurer. She has seen many changes in 25 years and will have many treasured memories. News and Views is in very good hands with Brian and the team at the National Office. She thanked the membership for their support and also offered her continued support to LUPUS UK. Diana Coupland, actress and National Patron, introduced the afternoon session and reported on the good and continuing progress of the charity.
Dr Graham Hughes then spoke, covering the most frequent questions about lupus (many of these have been well covered in past News and Views so are not included here). This is his last year before retirement from the NHS and he would like to thank those who helped to raise funds and support the work of his team. St Thomas' had the first dedicated lupus unit in Europe and they have now trained 417 doctors from overseas. Dr Hughes then went on to tell us about the Big 3 - lupus, Sjogren's and Antiphospholipid (Hughes or APS) syndrome as he describes them to GPs when teaching them. He highlighted symptoms, diagnosis and treatments. He also talked about the patients who were often misdiagnosed as having ME, atypical (not conforming to type) MS, etc. Dr Hughes said that the best way to educate GPs was through the patients! He closed his talk by once more thanking LUPUS UK for all the help that they give the unit at St Thomas'.
The next session of the afternoon was the medical panel. The panel was chaired by Dr Brian Hazelman of Addenbrooke's Hospital with Dr Graham Hughes, Prof. Sir Peter Lachmann, Dr David Jayne also of Addenbrooke's hospital and Dr Nick Sheehan from Peterborough Hospitals Trust. There were lots of questions from the floor and there could have been many more had time permitted. The full and comprehensive answers were very much appreciated by the delegates.
Cambridge Voices then entertained us for half an hour with their conductor Ian de Massini. It was beautiful music and we were entertained and educated about the way the music had been written to use the full range of the human voice.
The Conference prize draw with over 600 and the auctioning of two plane rides donated by Marshall's airport in Cambridge with over 200 were much-valued fundraisers.
The afternoon concluded with the Chairman reminding us all that Bristol is to be the venue of the 2004 Conference on 23 May, and that he would want to see us all there.
Tea was served, people bought last items from the LUPUS UK shop and bade their farewells. I spoke to someone on my way out who said that it had been their first Conference and that they wished they'd been to them before and certainly would be going again. It was a really interesting day with a wide range of speakers and with the great opportunity to talk and share with other lupus patients. It was also really good to see some local doctors hold their own on the medical panel!
Thanks, Jane, for the time and effort put in to provide LUPUS UK members with a valued report on their Annual Conference.