This month's article has been written by Yvonne Norton. Yvonne is the Chair of the West Midlands lupus support group as well as being the Vice Chair and a Trustee of LUPUS UK. Here's what she had to say;
"LUPUS UK is, I believe, unique in that, apart from a staff of just 6 people – 4 full time and 2 part time – it is run completely voluntarily, mainly by people who either have lupus or are the partners or parents of lupus patients.
I think the strength of the organisation comes from Regional Groups. Since organised support for lupus patients began in 1978 and Regional Groups were established, they have been the core of, firstly, the Lupus Group (part of Arthritis Care) / British SLE Aid Group which progressed to become LUPUS UK. It could be said that Regional Groups are the grass-roots of the charity.
Over the years, the number of Regional Groups has lessened as areas/counties have been merged, either through boundary changes or to take account of the size of membership. There are currently 24 Regional Groups covering England, Scotland, Wales and Northern Ireland. Each Group has a Committee comprising of a Chair, Treasurer, Secretary, Membership Secretary, Publicity Officer, Events Officer, Newsletter Editor and more – at least, that was how Groups began and, in the ideal world, is how they would be today. However, things change and the majority of people no longer want to be part of a Committee and to attend 3 – 4 business meetings each year. Committees are becoming smaller and, where they are still in operation, Officers are taking more than one role. We heard at the recent National Council Meeting that several Groups have a Committee of just 3 active people with 1 Group having 1 ‘fit’ and 1 ‘poorly’ person keeping their Group alive. In some areas, the Groups no longer have a Committee but a Regional Co-ordinator who organises one or two Support Meetings a year and ‘persuades’ folk to help as needed. The official business of these Groups being carried out by National Office.
A fully-functioning Regional Group would have a Chair and supportive Committee who meet regularly to ensure the smooth running of the Group, at least 2 Support Meetings each year, a well-attended AGM, local coffee & chat meetings, possibly a Drop-In facility within a hospital, a regular newsletter, Contacts (LUPUS UK trained) who are able to take telephone calls from people with lupus or seeking diagnosis, members willing to give talks and presentations to outside organisations or be available for newspaper/radio interviews and to attend functions as representatives of a Regional Group of LUPUS UK. Regular fund raising and social events would also be arranged. Sadly, none of the Regional Groups are now in a position to have all these features, however, each Group is working as well as it can within the constraints of dwindling Committee/organisational support and providing the best service possible to members with the facilities to hand.
If you feel able to help your Regional Group, whether as a Committee member, regular Supporter or in a one-off capacity please get in touch with your local Chair or, if you are unsure who you should contact, e-mail Paul at National Office - paul@lupusuk.org.uk – and he will link you with the appropriate person. Any help that you can give your Regional Group will be really appreciated and it will help you feel good as well."
You can find which would be your nearest regional group here - lupusuk.org.uk/regional-gro...
Thanks for your help x
