THE HISTORY OF THE LLSG
The Leicestershire Lymphoedema Support Group was set up in 1995 by Charlotte Joy Thorne who developed Lymphoedema following breast cancer treatment. To her horror Charlotte found that it was not only difficult to get any treatment but even for anyone to acknowledge or recognise the condition in Leicestershire.
Charlotte being the sort of person she was decided to do something about the situation; she lobbied the health authority, wrote letters and spoke to the chairman of the Leicestershire Health Authority and generally made a nuisance of herself!. She put an advert in the Leicester Mercury inviting people to a meeting at the Post House and approx. 120 people turned up. From that meeting the LLSG was formed and became a proper charity. ( Reg. Charity no. 1058606 )
The aims of the group when it was set up were to help sufferers, to advise and inform them; to lobby for better treatment within Leicestershire and create a better awareness of the condition amongst the health professionals in Leicestershire.
In 1995 there were isolated pockets of people who knew about Lymphoedema – LOROS did some work; a nurse at The General provided some hosiery and various surgical appliance people and vascular surgeons tried to help but there wasn’t a co-ordinated service.
Charlotte got the group involved in various groups concerned with cancer and palliative care within the county so that Lymphoedema had a voice within the health authority especially when it came to planning for future services. As well as lobbying the health authority at every opportunity the group set to work trying to raise money. Various functions have been held over the years; bar-b-ques, lunches, garden parties, cheese and wine do’s etc. Much of the money raised has gone into training nurses and therapists at LOROS and Hinckley as well as providing equipment for LOROS – a large size wheelchair for patients use; a leg lifter; weighing scales and specialist beds.
The group continues to raise money whenever it can and are always looking for people to help organise and help at events.
The group has also participated in the Care of the Person with Lymphoedema module at the De Montfort University which aims to train nurses as part of a University degree course and also taken sessions talking to patients on the LOROS Living with Lymphoedema program.
As far as support goes the group tries to provide information to patients and help whenever it can or at least point people in the right direction. The group produces a newsletter once or twice a year and sends out booklets and information leaflets purchased from the Lymphoedema Support Network(LSN) who are the national support group.
Over the years we have had regular coffee mornings, and bi-monthly evening meetings were also held for some years as it can be very useful to talk to people who have the same condition as you. It can be reassuring and helpful, people can air their concerns and tend to feel a bit better when someone says, “oh yes that happens to me as well” – it means they are not alone. A great success has been the twice-yearly afternoon teas, and these will certainly be continued.
Although the treatment situation, because of the LOROS Lymphoedema unit, is much better now than in 1995 we can’t rest on our laurels, there is always more that can be done so the initial aims of the group of advising and informing sufferers; to create a greater awareness of the condition and the needs of sufferers still hold true today.
Anyone who would like to join the group either as a member or committee member are always welcome. ( to join use the contact page )