Cancer charity calls for investigation into free care refusals

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Media captionAndy Masterton was twice refused free personal care despite being terminally ill with motor neurone disease

A cancer charity has called for an "urgent investigation" to find out how many terminally ill people are being wrongly charged for personal care.

It follows the case of Andy Masterton who was told by East Ayrshire Council that he wasn't close enough to death to qualify for the benefit.

The council only reversed its decision after the case was highlighted by BBC Scotland.

Marie Curie Cancer Care now wants cases across Scotland to be reviewed.

The charity's head of policy for Scotland, Richard Meade, said: "We call for an urgent investigation of the situation across Scotland to ascertain how often people with a terminal illness are being denied the support they are entitled to at a time when they need it most.

"Nobody seems to know how many people under 65 are entitled to free personal care, receiving it, or being rejected.

"To have to go through those battles when you're terminally ill and time is precious is not good."

Help with washing and dressing is currently only free for over-65s in Scotland.

'Deeply unfair'

Guidance produced by the Convention of Scottish Local Authorities (Cosla) recommends that councils also waive charges for those under 65 who have a terminal illness.

However, councils interpret this guidance in a variety of ways.

Mr Masterton was told he had "applied too early" for the benefit, despite being diagnosed with a terminal illness which has an average life expectancy of just 14 months.

He was turned down a second time despite being almost entirely paralysed and bedridden.

East Ayrshire Council said only people who could prove they had less than four weeks to live were entitled to free personal care.

Gordon Aikman, who was diagnosed with motor neurone disease aged just 29, has been campaigning on the issue. He told BBC Scotland the "cruel and deeply unfair" practice of charging terminally ill patients has to end.

He said: "As the case of Andy Masterton shows, the current guidance isn't working.

Stiff penalties

"The simple way to end this practice is to make it illegal for councils to charge terminally ill patients for personal care and introduce stiff penalties for councils that break the law.

"Given half of people with MND die within 14 months of diagnosis, it is clear that time is not on our side. The Scottish government needs to outlaw this now, no delays, no excuses."

Earlier this year, MND Scotland said too many people with the disease were being turned down for free personal care.

Health Secretary Alex Neil promised to bring in powers to tackle the problem if it wasn't sorted out voluntarily.

The Scottish government told the BBC it was working with Cosla to update guidance so that all authorities could apply a consistent and compassionate definition of a terminal illness.

East Ayrshire Council is reviewing its policy.

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