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Marie Curie calls for investigation into denial of free personal care for terminally ill

20 August 2014

Following reports that a terminally ill man in Scotland was being denied free care "for applying too early", Marie Curie have called for an urgent investigation to find out how many people with a terminal illness are being denied the support they are entitled to.

As reported by BBC Scotland (and other sources) Andy Masterton, who is in the final stages of motor neurone disease, was denied free personal care by East Ayrshire Council.

The Council said they would only provide free care for people under 65 years old if they had less than four weeks to live, despite guidance from the Convention of Scottish Local Authorities (COSLA) which states that people who are terminally ill “cannot be charged for personal care”.

Last year, MND Scotland produced a report which showed that whether or not local authorities choose to follow COSLA guidance (and how they follow it) varies enormously across the country. East Ayrshire Council was identified as having a "particularly hard line approach".

Since the recent press coverage, East Ayrshire Council has reversed its decision and agreed to devise a new personal care charging policy which is fairer for terminally ill people. However, Marie Curie Cancer Care has called for an urgent review of all cases across Scotland.

Richard Meade, Head of Policy and Public Affairs, Scotland at Marie Curie said: "Marie Curie was concerned by Mr Masterton's story. Unfortunately, Mr Masterton's case is not isolated. Marie Curie work with people who are terminally ill and some of the under 65 year olds we care for have experienced similar struggles with their local authorities regarding free personal care, despite being entitled to it.

"The vast majority of people with a terminal illness want to receive their care at home and ultimately die there. In order to achieve this, they often need a significant amount of support and care from health and social care professionals, carers and loved ones. Personal care support is crucial to this and people with a terminal illness should not have to spend the precious time they have fighting with their local authorities to get what they are entitled to.

"We welcome the Scottish Government's interest in Mr Masterton's case. However 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."

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