Lupus UK

• Home
•  » Latest News
•  » Annual Conferences
•  » 19th Annual Conference and AGM, May 2010

19th Annual Conference and AGM

The LUPUS UK Annual Conference and AGM 2010 took place at the Old Swan Hotel, Harrogate, North Yorkshire on Sunday 9th May.

The speakers for this year’s event included:

Prof Andy Smith, Professor of Exercise and Sport Sciences,York St John University

Dr Mohammed Akil, Consultant Rheumatologist and Jane McDermott,Lupus Specialist Nurse, both of Royal Hallamshire Hospital, Sheffield.

The Conference was hosted by the Yorkshire Lupus Group.

LUPUS UK National conference and AGM

Chris Maker attended to the house keeping issues at the start of the day and Jack Hirst, Chair of the Yorkshire Group, welcomed us to Harrogate.  He spoke about the link that the hotel has with Agatha Christie.  Jack was pleased to see so many people (over 200).  He also played tribute to everyone who had hosted a Conference previously and to the staff at our National Office.

Our first speaker was Dr Shouvik Dass, Consultant Rheumatologist from Chapel Allerton Hospital, Leeds Teaching Hospital NHS Trust (the first EULAR Centre of Excellence for Rheumatology), who spoke about the new treatments in lupus.  There have been studies in Leeds looking at rituximab in people with severe lupus.  He concluded that the more choices of drugs that there were for the lupus patient the better. This was a difficult and technical subject but Dr Dass explained it very well.

Jack introduced our next speaker and reminded us all of the power of LUPUS UK to be able to support Lupus Nurses when all our small amounts of money are added together.

Dr Mohammed Akil and Jayne McDermott spoke about the role of the Lupus Specialist Nurse at Sheffield’s Royal Hallamshire Hospital.  Dr Akil talked to us about the start of the monthly lupus clinic in 1997.  It soon became once a fortnight involving specialists from other areas.  Jayne started in 2008 and lupus clinics are now run twice a week with a monthly combined pregnancy clinic.  A description as to what a patient can expect at Royal Hallamshire was given.

Jayne described the job as a Lupus Specialist Nurse as her “dream job”.  She has been fortunate to visit other Lupus Specialist Nurses as well as be supported through the LUPUS UK Nurse Network.  Jayne holds a nurse led clinic twice a week seeing nine patients for 30 minute appointments but warned that she is always running late because she wants to give each patient the time that they need.  She also runs a helpline for her patients and gets calls from GPs as well as patients around the country.  Jayne has evaluated her service and had been touched by the comments that she had received.

We then had a break for coffee before we reconvened for the AGM.

Before the AGM Yvonne Norton, Vice Chair of LUPUS UK, reminded us that the following Monday would be World Lupus Day (WLD) and would like to repeat the mass text exercise.  Each person was asked to text 10 people and for them to be asked to pass it on to 10 more people and so on.  New WLD posters and bookmarks were available.  Yvonne then went on to tell us about the LUPUS Europe on line survey “Living with Lupus – career and work situation”.  The link is available through the LUPUS UK website.

Jane Dunnage then opened the AGM with her opening address.  This year she spoke about the work that the charity has been doing to improve its governance and the role of the Trustees.  She told conference attendees about the new Contacts’ course that is being established that all Contacts will have to do even if they have already been on a course.  A distance learning package is being set up to help those who are unable to travel.

Jane also spoke about the awareness raising work that has been ongoing, liaising with other medical charities, MPs and the medical profession.  The patient questionnaire that was completed last year was going to support our awareness raising work; there was an over 50% response rate.  The survey is still to be analysed but the initial results are that there is an average of 7.6 years to diagnosis for lupus.  Nearly 45% of patients were misdiagnosed.  There are over 30 different symptoms but fatigue is the most common (90%).  85% have pain and between 50 and 60% with circulation problems, joint pain, flu like symptoms and back pain.

All our members, committee members and group chairs especially were thanked along with our National Office staff and Jane’s fellow Trustees.

Tina Stemp then went on to present the accounts.  This year we got to see some graphical presentation of the Charity’s income and expenses, which was a great help.  Dividends and interest payments are down this year because of the world wide financial situation.  46% of our money was spent on research and welfare grants.  Of which 69% was spent on specialist nurses and 31% on research.  30% is spent on support costs.  We had a surplus of £10,000 for 2009.  Finally our auditors for 2010 were appointed.

Chris Maker then gave the Director’s report.  2009 was a busy year!  Sarah Brown organised the Downing Street Reception, which was started through Twitter.  The new Lupus: Guide to Diagnosis and Treatment was launched and he thanked the contributors and Yvonne Norton for pulling it all together.  LUPUS UK collaborated with the Juvenile SLE (JSLE) group on the new leaflet for young people.  The LUPUS: Need to Talk leaflet was also launched.  The website has been in the process of being updated and we can now order LUPUS UK saleables on line.  Janet Dean had been Chair of the All Party Parliamentary Group (APPG) for Lupus for 10 years and we owe her a debt of gratitude.  A new APPG will be formed with the new Parliament.  Chris also thanked our wonderful fundraisers and the companies and grant awarding trusts who have continued to support us.  His colleagues at National Office were also thanked along with all our Members, Group Committees, Chairs and the Trustees.

LUPUS UK are seeking registration with Association of Medical Research Charities (AMRC) as we fund research and therefore we needed to change our constitution to help comply with their guidelines to set up a peer review panel for grant applications.

We then had a wonderful lunch in the main dining room of the hotel. After lunch we were entertained by Norman Britten, a friend and long-term supporter of the Yorkshire Group.  He has a daughter who has lupus.  Norman is a retired Headteacher and told us stories of his experiences and some of his favourite assemblies.

Andy Smith, Director of Development, York St Johns University spoke to us about the benefits to health of exercise as a Professor of Sport and Exercise Science.  Andy has had two brain tumours and has had to make himself do the right thing even when he really didn’t feel like it.  He also expressed really well that we don’t want to be defined by illness.  This created some automatic empathy and not just a person who loved physical exercise.  He based his talk on scientific evidence as well as his own experience.

Finally Vocal Expressions sang for us.  One of their members lost a daughter to lupus and they raised a lot of money for the Lupus Specialist Nurse at Sheffield’s Hallamshire Hospital.  They were very good and were joined for one song by Charlie, the son of the daughter who had died from lupus.  There weren’t many dry eyes in the room!

And then to Hampshire … next year’s conference venue!  See you there!

Jane Robinson - Member Trustee