Ready to fight on once again

The site in Blackdown, which offers residential respite care for people with the condition and is also the permanent home of ten residents, appeared to have been saved from the axe this spring when MS Respite and Care Services stepped up to take it over from the national charity, the MS Society.

Campaigners, including many patients, had been under the impression that the new owner would be taking over in November - until they were hit by a very unexpected and unwelcome piece of news last week.

Seventy-three-year-old Angela Twomey, whose daughter Maureen lives in one of the permanent flats at the site and is totally dependent on 24-hour care, said: “Last Tuesday we were told that the sale was still on and it should be completed by the end of November. Two days later I was told that they had pulled out. We have not been given any reason why.

“We don’t know what we are going to do. It’s just like being knocked down and, while you are down, being kicked in the teeth. It’s devastating and frightening.”

Mrs Twomey, who lives in Leamington, was herself admitted to hospital yesterday (Thursday) for a hip operation and so is unable to care for Maureen. She said: “There is not another place in England that totally caters for MS.

“I can tell you now, if that home closed, my daughter, along with others in the same situation as her, would not last.”

Maureen Hillman used to live at the centre but has since moved to a sheltered housing complex in Dudley. She said: “I feel lucky. I was under so much stress when we were told Helen Ley might close.

“It’s clear that I made the right move but I am still in touch with everyone there and would still fight to keep it open for essential respite care.”

The MS Society last year made the decision to end its respite care services, following a consultation which the charity said showed the majority of people with MS prefer alternative types of care.

A spokewoman for the charity said negotiations with MS Respite and Care Services ended after neither organisation could agree a “mutually acceptable outcome” that met Charity Commission regulations, but that new discussions had begun with another potential provider.

Martyn Tilson, who has been at the forefront of a campaign to save Helen Ley, said: “The MS Society is blaming the failre to conclude the sale on unspecified Charity Commission regulations.

“Here the society has form, having made a number of claims in the past either regarding selective and misleading interpretations of commission regulations.

“In the meantime, guests, residents and staff remain in limbo, with the future of their lifeline and their jobs left in unreasonable certainty.”

The society’s chief executive Simon Gillespie said: “The MS Society will continue to seek to transfer the centre to an alternative provider. We will keep guests, residents and staff updated as things progress.”