Some Scots councils charging terminally ill for care

Some Scottish councils are charging terminally ill people for personal care when they should get it for free, according to the charity Motor Neurone Disease Scotland.

Personal care, provided by local authorities for people who need it at home, can include help with washing, feeding, dressing, toileting and getting in and out of bed.

Since 2002, people over 65 years in Scotland have received free personal care. People under 65 years, who require personal care, are financially assessed by their local authorities to ascertain whether or not they should make a contribution.

COSLA guidance for local authorities on charging states that people who are terminally ill “cannot be charged for personal care”.

However, MND Scotland has discovered that many people under 65 with Motor Neurone Disease, a rapidly progressing and debilitating terminal illness, are being charged for personal care, when they should be exempt.

MND Scotland has produced a comprehensive report which demonstrates that terminally ill people who are under 65 years old in Scotland face a postcode lottery when it comes to personal care charging. Whether or not local authorities choose to follow COSLA guidance and, if so, how they follow it, varies enormously across the country.

Some local authorities waive charges if a person has a letter or DS1500 form from their doctor. A DS1500 is a form used by the DWP to fast track benefits for people who are terminally ill.

Other local authorities may not accept a doctor’s letter or DS1500 and choose to keep it a “grey area”, allowing for “discretion”.

East Ayrshire Council has adopted a particularly hard line approach and only waives charges if at the point of referral for care at home services “the life expectancy of the service user is less than 4 weeks.”

MND Scotland wants to see all local authorities in Scotland follow COSLA guidance and exempt people who are terminally ill from personal care charging.

Specifically, they are calling for:

• COSLA to add to its guidance that a doctor’s letter or DS1500 should be accepted as evidence that a person is terminally ill.
• The Scottish Government to publicly endorse COSLA’s guidance and consider updating legislation to include those who are terminally ill
• Local authorities to be fully transparent in their charging policies and have their full policy online.
• All local authorities should follow COSLA guidance now and exempt people who are terminally ill. A doctor’s letter or DS1500 should be accepted as evidence of this.

Andy’s story

Andy was diagnosed with MND in January 2013. He was 57 years old and had to retire on medical grounds shortly afterwards.

Just a few months after diagnosis, Andy’s MND had progressed to the extent that his wife Marjorie, was unable to care for him at home without support. Andy and Marjorie applied to their local authority for personal care at home.

Andy has been provided with a DS1500 by his doctor but unfortunately his local authority does not accept this as evidence that he is terminally ill. Their policy states that only those expected to live no longer than 4 weeks at the point of referral for personal care can have care charges waived.  If Andy lived just 5 miles away, he would be in a different local authority and would not have to pay for his personal care.

Andy and Marjorie have appealed with the support of MND Scotland and local MSPs but to date the local authority has refused to waive the charges for his personal care.