17th Annual Convention and AGM, May 2008
Sunday 11th May 2008, Marriott Hotel, Glasgow
A lovely spring weekend saw a friend and I head off for a long weekend in Glasgow. I'd never been and was looking forward to seeing this former City of Culture (1990) and to attending the LUPUS UK National Convention and AGM.
On Saturday late afternoon the Strathclyde Group hosted a "Meet and Greet" session for people who had travelled and already arrived in Glasgow. We were treated to tea and home made sweets. It was a great opportunity to catch up with old friends and to make new ones.
Sunday morning arrived and registration started at 9am. At 9.30am we were officially welcomed by Jane Atkinson, Chair of the Strathclyde Group. Our first speaker was Dr Asad Zoma, Consultant Physician in Rheumatology at Hairmyres and Stonehouse Hospitals. Dr Zoma spoke of his work with the British SLE Assessment Group and also of an international group that now has over 30 centres from North and South America to South Korea via Sweden and the UK with applications from China, Brazil and Spain. They are all looking at the diagnosis and the management of lupus and measuring disease activity, damage by the disease and quality of life. Collaborating centres are now working on the biggest 'acception cohort' study in lupus. They are looking to accept 1,500 people with lupus into this study. Some figures have been published at the recent European Lupus Conference.
Our second speaker was Dr Elaine Morrison, Consultant Physician/Rheumatologist at the Southern General Hospital in Glasgow. She spoke about the Rheumatology Day Unit and Helpline. This gave the hospital's patients freedom, flexibility, convenience and is family friendly and saves admissions to hospital. The service offered is multidisciplinary (many health professionals) and a full range of treatments. Treatments include: Intravenous infusions, emergency assessment, joint injections and information and education. As well as a telephone helpline the unit gives information via a newsletter, email and text messaging. The education that is offered is to the patients and hospital staff.
We then had a short break for a leg stretch and a drink before the next speaker Professor Naveed Sattar, Professor of Metabolic Medicine from Glasgow Cardiovascular Research Centre and Glasgow Royal Infirmary. He spoke about lupus and Coronary Heart Disease (CHD). There are well known risk factors for CHD. These are smoking, age, gender, if you have diabetes, the ratio between good and bad cholesterol, high blood pressure, obesity, social class, ethnicity, poor kidney fashion and inflammatory conditions. People with lupus have inflammation and sometimes kidney disease and so the risk doubles from the normal risks. In an imaging study, more heart disease was found and this is increased the older someone is when they are diagnosed, and the duration of the disease. People with rheumatoid arthritis should have the risk score multiplied by 1.7 and this is probably the same for people with lupus. To lessen the risks patients should stop smoking, keep active, avoid excess weight gain (avoid fat and refined sugar, eat high fibre and fruit and vegetables and stop snacking). Treatment for lupus should be more aggressive to decrease activity and CHD risk and cholesterol treatment should be considered. People with lupus have more reason to get their CHD risk factor measured and have their cholesterol tested. They may need to start Statin treatment earlier.
The AGM followed. Jane Dunnage, National Chair, addressed the convention and she spoke of supporting groups, committees and contacts. She also thanked our National Office staff, our volunteers and the Trustees. The National Treasurer, Tony Rance, presented his final accounts for the last time. Sadly the Charity's auditor passed away before he was able to sign off the accounts and therefore Tony was unable to present audited accounts. As these have to be presented to the Charity members at a general meeting an Extraordinary General Meeting will be planned for the autumn. Chris Maker, Director, gave the National Office perspective of the year for the Charity and talked about the conferences that had been attended and raising awareness. Yvonne Norton, Vice Chair, then spoke about the ELEF Common Cause. Finally the members were asked to approve the changes to the constitution that were required by the Office of the Scottish Charity Regulator.
Lunch was then taken which was a good opportunity for people to mix with others as well as enjoy some good food. After lunch Frances Curran (Patron, former MSP) addressed the convention. She spoke about establishing the Cross - Party Group for Lupus in the Scottish Parliament. Her sister has lupus and it took a long time for her to get a diagnosis. We must increase awareness, particularly in the medical community.
Dr Max Field, Reader in Rheumatology and Medical Education, University of Glasgow then spoke about lupus nurses and what we would like them to do. The first lupus specialist nurse was appointed in 1987. There are now 15. There is no standard job description for LUPUS UK funded nurses. Dr Field then asked the participants of the convention what they wanted from specialist nurses. We worked at the tables we were sitting at and completed a short questionnaire. It was really different to do this at a convention and have some involvement. Our answers would be compared with what lupus nurses are doing now. We then looked at what our specialist nurses are doing now based on some research that Dr Field and his team have done. All started their role because of LUPUS UK funding and have since been taken on by the NHS. Their role includes drug monitoring, inpatient reviews, managing databases, research, patient/student education, counselling, advice lines (including via the internet).
The entertainment was a singer, Judith McSweeney and her band singing traditional Scottish songs. After the entertainment there was a raffle. Then we were all invited to Stoke on Trent in May 2009. Finally a farewell cup of tea was offered and everyone made their way home. Glasgow is an extremely friendly city and we were made to feel very welcome. It has some excellent tourist attractions, not least all the architecture and Rennie Macintosh fame. I enjoyed it greatly. If you have never been to a National Convention before and think that you would quite like to go, I can really recommend it. It is a great way to learn more about lupus and to meet other people who know what it is like to live with lupus. The 2009 National Convention will be in Stoke on Trent and I look forward to meeting many of you there.
Jane Robinson - Trustee
We are once again most grateful to Jane Robinson, for taking time to put this report on the Convention together for us.