EAST MIDLANDS REPORT FOR NEWS AND VIEWS
I have been asked to write this report for News and Views on behalf of the East Midlands Lupus Group.
Like many regional groups we have found it increasingly difficult to attract lots of members to support our events, but we have a few trusty steeds! I have often felt that the internet can give people the information they are seeking and that is why they perhaps don’t feel the need to meet up with other sufferers, which is a shame. Websites can sometimes contain misleading and potentially alarmist information, whereas the local trained Contacts have personal up to date knowledge of Lupus, and although cannot give medical advice, know whom to point sufferers towards, locally, to get the right advice if required.
History of the East Midlands Lupus Group
We would like to give you a little of our group’s background, and how it was formed by Gill.
I remember so well being told that I had Lupus, even though that was way back in 1979! I had never heard of Lupus, but quite by chance a relative sent me a national newspaper cutting from a lady enquiring ‘Is there anyone else out there with Lupus?’ That lady was Cheryl Marcus who of course started the Lupus Group, which was at that time part of Arthritis Care. I joined up immediately. With the help of Eric Howard, then national director of the Lupus Group, and an excellent organisation Self Help Nottingham, we got together and formed the East Midlands Group in the eighties. The knowledge that there are others out there who understand the frustrations of lupus, is so reassuring and I would not underestimate the beneficial effects of making contact with other sufferers. The internet and social media sites like Health Unlocked are useful but they can never totally replace talking in a one to one situation, or meeting up with other sufferers over a friendly cuppa. I do urge you to attend meetings if you can, and support those of us who give our time, so that new members don’t feel alone and isolated. We are a friendly bunch, really! Our local website is
Like many groups, the East Midlands Lupus Group was a thriving one in the eighties and nineties, attracting hundreds to its fundraising concerts and other events, we did local radio broadcasts and community service announcements on TV, but the group folded for a short time, due in part to insufficient people to carry on. We got going again in 2009 however, with Chris Maker’s help and, apart from our treasurer Linda Skinner and myself, with mostly new faces.
We continue to support our members and fundraise when we can as we have never lost sight of our aim, to reach newly diagnosed sufferers, raise awareness and make a difference. We have five contacts, all trained by Lupus UK covering the Leicestershire and Nottinghamshire counties. They are all listed in News and Views. At this moment we do not have any contacts covering the Derbyshire or Lincolnshire areas, so if anyone is interested in knowing more about this important work, do please get in touch. It would be good to have all of the counties which we now serve, covered by a contact.
Information Day and AGM
We now have a low key AGM and Information Day. Members tell us that a chat over a cup of tea is the most beneficial thing. This year’s event was on 19th April 2014 at Kegworth Village Hall, and we welcomed friends old and new to it, and played a DVD of the recent information day in Cambridge.
Our main fundraising event of the year is the annual Salsa Night which is held in August each year. This year’s event is on the 2nd August. Thanks as always to Cleon Nelson for organising this. He chose Lupus UK and Marie Curie Cancer Care to share the proceeds of the event as he lost a friend to each disease. As soon as one year’s event is over, he starts planning the next and is a real tower of strength. Please check our website for details of this and other events. Please support us if you can.
We received a cheque for £1,500 for the 2013 Salsa night.
We have information stands at the main hospitals in the area periodically, always during Lupus Awareness month. This is our display at the Queens Medical Centre Nottingham, but we try to cover other hospitals too.
We are fortunate to have very supportive Lupus specialists and specialist nurses at the Queens Medical Centre Nottingham. Nothing is too much trouble, and help is only a phone call away if you have any concerns. They currently have an epidemiology study running, led by Dr Frances Rees, which is funded by Lupus UK.