For several decades the respite care homes provided by the MS Society have had a reputation as excellent temporary refuges, allowing people with multiple sclerosis and their carers a short break from daily pressures of living with the condition.
In two weeks' time, however, the charity faces a critical decision as its trustees rule on whether they want to continue running four residential homes across the country or whether traditional forms of respite care are outdated and need comprehensive reform.
The board could decide to close all four homes, and redirect the funds spent on running them to offer a more personalised service to people with MS and their carers, or they could radically redesign the services on offer. The charity has spent the past year in consultation with its users about what they want from the organisation, and the report summarising the consultations suggests they want change.
Whatever the outcome, the announcement is likely to prove controversial, as there are users who still rely heavily on the support of these institutions, just as there are those who question their value.
The decision is one facing many charities that provide support to disabled people, as the new personalisation agenda offers the prospect of more individually-tailored services. Organisations such as Leonard Cheshire Disability are beginning to offer respite care in individuals' homes, and help with trips to holiday centres such as Center Parcs. Across the country, in a parallel trend, local authorities have begun closing daycare centres, as it becomes clear that, once given the choice, many people would choose to do something else with their time.
The MS Society has digested responses from 1,637 people, 1,030 people with MS and 607 carers of people with MS, as it tried to determine the best way to provide respite care. The process of compiling the report has focused attention within the charity on the very diverse demands of its members, highlighting starkly that the one-size-fits-all model has become outmoded. The difficulty in deciding how respite should best be provided is exacerbated by the fact that the needs of people with MS differ enormously, depending on the severity of the condition.
The review process also triggered a close analysis of what modern respite care should entail, and its conclusions will resonate beyond the 9 June decision on the future of these care homes.
"Some of the homes have been running for 30 years. The overwhelming motivation then was to get people into residential care; that was the model of how to deliver care services for individuals with disabilities then," says Simon Gillespie, chief executive of the MS Society.
"There is a sense that society has moved on since then. Now we realise that most people don't want to be in that sort of residential setting. No matter how well run, how nice the staff are, people say they would rather not be there if there was any other option," he says. "The MS Society has been guilty in the past of saying, 'You get what we provide.' Now we are shifting power to the individual. We should be promoting the rights of individuals to whatever choices they need."
The review also indicated that the centres are used mainly by those who live near them, or who are fit enough to travel long distances to get to them. In 2008-09, 1,365 people used the MS Society's three homes in England and one in Scotland; a fraction of the 100,000 people who have MS in the UK.
The society subsidises the running of the four centres by £2.7m a year, while the other £4.5m running costs are met through fees and local fundraising. Individuals pay between £800 and £1,150 for a week in the care centre; this can be funded through local authority grants, charitable donations, or by individuals themselves. The centres provide 24-hour nursing care and physiotherapy, and some have beauty salons and restaurants on-site. Occupancy rates remain high, but staff are aware that the institutions' popularity is waning.
Gillespie says the decision is not about cost-cutting but about analysing how best to spend the available resources. "Different people at different times have different needs and requirements," he explains. "You could have two people who are affected by MS in very similar ways. One person may feel that two weeks of respite care would meet their needs. Another might think, 'Over my dead body.'
"There is a lot more to respite care than the provision of care in a residential home. The terminology itself feels a bit old; the use of the term 'respite care' is becoming less appropriate, once you find out what people actually want." Gillespie adds the disability movement is "working hard to avoid having something foisted on them that is very inappropriate".
"Even those who use our respite care centres and rate them very highly, even those people say they would prefer to be somewhere else. They say, 'Why am I here in this care centre when my husband is on holiday in Prague?" Gillespie says.
Conscious that the decision on the centres will prove divisive, the charity has been open with staff and users about the decision that faces them, eager to deflate possible dissent. Employees and society members can attend the board meeting with prior notice on June 9, but the decision will be voted on in a confidential session by trustees, most of whom have MS.
As the review suggests, among people with MS, there is a range of views about the imminent decision. Sanjay Chadha, 42, who has been affected by MS for the past 25 years and now uses a wheelchair, has been to the charity's centre in York on several occasions. He says he would be very sorry to see the centres close.
"It's a fantastic option to have. Everyone had a very great knowledge of MS. The centre allowed you to have your own space and to have various therapies, and use the on-site gym. It was a fantastic break for me as well as for my wife. It would be a real tragedy if it were to close," he says.
Stephen Page, 49, who has had MS since aged 40 and is a wheelchair user, argues in favour of an option more tailored to his individual needs. He lives in Worthing, west Sussex, and says he would find it difficult to travel to one of the centres and did not in any case feel that the residential model suited him. "I'd rather get more support so I can enjoy the seaside and go to more cultural events," he says.
"The mistake is to call it simply respite. It's impossible to get respite from this condition."