Cutbacks hit MS families' £140-a-day respite care

FUNDING for specialist respite care for patients with multiple sclerosis in Scotland is being cut back, leaving many having to find the money themselves, The Scotsman has learned.

With the economic downturn putting increasing pressure on local authority budgets, carers say a postcode lottery of respite provision is emerging.

This means that MS patients at Leuchie House – the only specialist MS respite home for people in Scotland and the north of England – face a choice between paying for breaks themselves or going into cheaper care in nursing homes.

But experts said that such homes – often caring for the very elderly and those with dementia – were not always appropriate for people with MS, who come from all age groups.

The Scottish Government says it has agreed with local authorities to increase respite care funding over three years.

Leuchie House, near North Berwick, is funded by £800,000 a year from the MS Society Scotland.

But the high level of nursing required by those using the centre means a 12-day break still costs between £1,100 and £1,700 – up to £140 a day.

This bill is picked up by the patient, their local authority or grants from charity.

Mairi O'Keefe, manager of Leuchie House, said it was a "postcode lottery" whether patients received funding from their local council.

"It depends on what local authority you live in and how much respite they are willing to fund," she said.

Ms O'Keefe said that some councils would provide funding up to the cost of a nursing-home place, which is cheaper than Leuchie House because they offer a less specialist service. She said in some cases people with MS were forced to accept respite in nursing homes or none at all.

"If people with MS cannot come to Leuchie House, they may be placed in local nursing homes, often with people much older than themselves with conditions such as dementia.

"This kind of care is cheaper, but it is so depressing for the younger guests. They are often just stuck inside. It can make them withdrawn if they have no-one to speak to."

Rachel Benson, bookings administrator at Leuchie House, said:

"People with MS feel they have to take the nursing home respite if it is offered, to give their family a break. But it can be a devastating experience, especially for younger people."

Shona Robison, the Scottish public health minister, said action was under way with Cosla – the umbrella body for Scotland's local authorities – to increase access to respite care.

"We have agreed with Cosla that there should be extra respite provision and an extra 10,000 respite weeks will be delivered by 2010-11," she said. "We have put in an additional £4 million to ensure that that commitment is delivered."

A spokesman for Cosla said: "Cosla and the Scottish Government have agreed to deliver additional respite weeks over the course of the next three years."

Case Study: The road to freedom

ELISSA Hay was diagnosed with multiple sclerosis ten years ago. Her condition has gradually deteriorated and she now has to use a wheelchair.

At Leuchie House, the MS Society Scotland's respite care home, the 45-year-old can enjoy days out and activities which are denied to her when she is at home.

"I have problems walking," said Ms Hay. "I have become a couch potato. I could sit and watch the telly all day."

Ms Hay, from Edinburgh, said her condition had gone downhill in the last ten years, leaving her almost housebound.

But Leuchie House has given her some of her freedom back.

"They are wonderful. They do everything for you," she said.

Scotland is thought to have the highest rate of MS in the world, with 10,500 people diagnosed with the condition.

Symptoms vary from person to person and may include fatigue, problems with balance and walking and stiffness and spasms.