MS Society's plan to close care homes angers membership
A bitter row has engulfed a leading charity over plans to close its respite centres for people with multiple sclerosis. The dispute will culminate tomorrow in a vote of no confidence in the trustees of the MS Society after campaigners collected more than 30,000 signatures opposing the closure of the four centres which currently provide respite for nearly 1,400 people a year.
It comes just a year after the author JK Rowling stood down as the society's Scottish patron, saying she could no longer be associated with a charity that had "changed beyond recognition".
The Harry Potter author, a high-profile supporter of the society for almost a decade, blamed a "longstanding and escalating" conflict between the Scottish arm of the charity and management in London for damaging morale and forcing staff to quit.
The latest dispute centres on plans by the charity's London management to close all four of its respite homes arguing that people with MS would prefer "holiday-style breaks".
The charity currently runs Leuchie House in East Lothian, Scotland, Helen Ley Centre in Leamington Spa, Woodlands in York and Brambles in Surrey at a cost of £2.7m a year. It argues that withdrawing from directly running respite care will enable them to fund up to 30,000 breaks elsewhere.
It claims the decision is based on a consultation, which found that people with MS would prefer "holiday-style breaks". The charity hopes to establish a directory of suitable accommodation and a fund which would help pay for carers to support people with MS on holiday. It argues that this would enable people to take holiday breaks with their families and give them more choice over where to stay.
But a petition against the closures has collected more than 30,000 signatures. Campaigners argue that while many people would welcome more hotels with specialist facilities, there is nothing available to rival the specialist care and facilities of the centres. They argue that holiday breaks with family members will not give carers time off, one of the key purposes of respite care.
Janice Cook, a former vice chairman of the Society and Susan Tilley, a former assistant National Treasurer, tabled the no-confidence motion to be debated at the charity's AGM in London tomorrow. Martyn Tilson, who runs the Action Group against the closure of the Helen Ley centre, said: "It will be a tragedy if these closures go ahead. These centres are like really good hotels for people with advanced MS, with all the care they need. People with advanced MS frequently have no movement in their limbs and only move their head or their eyes. They need total care and it is unrealistic to expect that they are going to be going off on a variety of holidays with their family."
The charity argues that the current provision is unfair because the respite centres are mainly used by people who live relatively nearby.
A spokeswoman said: "Geographically, our centres are inequitable and we believe the Society has a much wider role in supporting people with MS to get the care they want – residential or otherwise."
Should the centres be shut?
Yes, says Dr Christine Barton MBE, 64, a former teacher and lecturer from Sheffield
I was diagnosed with MS in 1985 and am now quadriplegic. I cannot move any part of my body apart from my head. But I am still very active and don't let MS stop me doing what I want to do.
I do not like the term respite care because it suggests that people get respite from me and that makes me feel very uncomfortable.
I used the MS respite centres once 15 years ago and it wasn't very pleasant. I found they took away my independence. Now I organise care in my own home when my partner is away and we try to get a break together twice a year.
No, says Anne Félix, 58, from Coventry
I was diagnosed with MS when I was 36, and for the past few years I've been in a wheelchair. I have been going to the Helen Ley centre in Leamington Spa since 2002 and it is fantastic. At first, I was nervous it would mean sitting staring out the window, but it was not like that. It is like a health spa. After my first time, my family said I looked 10 years younger. I have built longterm friendships and when you are in a wheelchair it's good to have these friends. A stay at the centre is like a holiday for me. It's not just to give my carer a break, it gives me a break.
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