20th Annual Conference & AGM
The 20th Annual Conference and AGM took place on Sunday 8th May 2011 at
De Vere Grand Harbour Hotel,West Quay Road, Southampton SO15 1AG
Dr Chris Edwards - Consultant Rheumatologist,
Southampton General Hospital - Can The Environment Cause Lupus?
Dr Neil Buchanan - Consultant Rheumatologist,
Royal Hampshire County Hospital - Pregnancy and Lupus
Geoff Rowe (Stress and Change Management) – All The World’s A Stage – and most of us are desperately unrehearsed.
Report on the LUPUS UK National Conference and AGM
Tina Stemp, Chair of Hampshire Group welcomed delegates to the 2011 Conference. Southampton is the European home of cruise liners but was also the home of the Spitfire and passenger flying boats. The Pilgrim Fathers left from Southampton before their short stop off in Plymouth (the park next to the hotel is called Mayflower Park!). Nearby is the Hamble River (home of the 1980s TV series Howard’s Way), the New Forest and Beaulieu. The Isle of Wight is close by via ferry and catamaran. Portsmouth, Winchester and the South Downs are also easily accessible from Southampton.
Tina introduced our first speaker, Dr Neil Buchanan Consultant Rheumatologist from Royal Hampshire County Hospital, Winchester who spoke to us about Lupus in Pregnancy. Dr Buchanan did some of his training at St Thomas’ with Professor Graham Hughes where he worked with people with lupus and did some research on lupus and pregnancy. Dr Buchanan then spoke about the things that need to be considered with someone who has lupus before and during their pregnancy, as pregnancy involves changes to the mother’s immune system.
Dr Chris Edwards, Consultant Rheumatologist at Southampton University Hospital then spoke to us on ‘Can the Environment Cause Lupus?’ He started off with a personal thanks to LUPUS UK for supporting a lupus specialist nurse when their lupus clinic was first established. At Southampton University Hospital there is a strong interest in lupus and the environment. Some years ago Dr Edwards was asked ‘Why did I get lupus?’. His talk looked at this in more detail.
Yvonne Norton reminded us that Tuesday 10th May would be World Lupus Day and encouraged people to redo the ‘tell 10 people campaign’.
Jane Dunnage thanked National Office staff, our volunteers and fundraisers and her fellow Trustees for the work that they do to help keep LUPUS UK operating to support people with lupus. She also spoke about the work that has been done drawing up a ‘road map’ for LUPUS UK so that we can plan more effectively. The Medical Review
Panel to review research applications has also been created. There are LUPUS UK representatives working with National Institute of Clinical Excellence (NICE) on the new lupus drug belimumab/benlysta following the Federal Drug Agency (FDA-USA drug approval body) approval earlier this year. NICE are working through the appraisal
process during 2011. LUPUS UK is also working with umbrella organisations to ensure we are represented with regard to the Government’s plans for the NHS. The members’ survey is taking a while to analyse because it is being worked on as a favour, but the message learnt to date is that the average is seven years for a lupus diagnosis. Work is also being done with the Royal College of GPs to help with lupus awareness and education. Finally the working group for Juvenille SLE (lupus in children) continues its good work.
Tina Stemp then presented the accounts – copies available from National Office upon request and may also be viewed on the LUPUS UK website. The charity is in a good financial position despite the economic downturn, largely in part from some monies received from legacies. 54p in every £1 was spent on Grants. There has been nearly £4,000,000 spent on research and lupus nurses since 2000.
Chris Maker then summarised 2010 from the Director’s view point. £600,000 was pledged to research and lupus nurses (not all for 2010!). This is a new record. Work carries on to raise awareness of lupus in the medical profession by attending medical conferences and this continues to be a good method. News and Views is always a hit, and National Office are always looking for contributions and photos. Membership has increased after several years of decline. New members can now join online. A DVD for newly diagnosed patients is currently being worked on. Finally Chris thanked his colleagues, our volunteers and supporters and the trustees.
Delegates enjoyed lunch in the lovely hotel restaurant. Many people took advantage of the sunshine and the hotels proximity to the docks to stretch their legs whilst others mingled sharing stories with other delegates before our afternoon session.
Professor Graham Hughes opened the afternoon session. He brought with him some signed copies of his latest book which is an autobiography describing his life as a doctor involved with lupus and the antiphospholipid syndrome. He explained that lupus is a relatively new condition, compared with a lot of other conditions. Lupus prevalence has increased. The medical journal LUPUS is increasingly receiving article submissions on research from China.
Our next speaker was Geoff Rowe, a counsellor for more than 15 years. He wanted to give us a few messages:
The Conference closed with a light hearted talk on life by Gwen Appleton, a well travelled lady who following her retirement, after a career of many facets, has become a popular and well known public speaker. Her talk had been inspired by the location of the hotel near to the port famous for cruise ships, so it centred on holidays. There was plenty of laughter around the room so she hit the mark!
Jane Robinson - Member Trustee
Our thanks to Jane for kindly providing this report on this year’s successful Conference and AGM.