Frank’s law comes to fruition

New law providing free personal care to the under 65s is “wholeheartedly welcomed” by Alzheimer Scotland

Thursday 28th March 2019

As April draws nearer, so too does the introduction of free personal care for those aged 65 and under.

Frank’s Law came about after campaigning by Amanda Kopel, whose husband, Frank, a former Dundee United footballer, was diagnosed with early onset dementia when he was 59 and died as a result six years later. During his illness, Mrs Kopel said she experienced the “injustice” of her and her husband having to meet the costs of Frank’s care.

In 2013 Amanda Kopel started campaigning for the costs of care for anyone aged under 65 diagnosed with a degenerative disease, including motor neurone disease, Parkinson’s, cancer and Progressive Supranuclear Palsy, to be met by the state.

Currently anyone diagnosed with such a condition aged 65 and over receives free personal care, introduced by legislation in 2002. From the 1st April, anyone aged under 65 will receive the same as the Scottish Government provides £30m of new investment for 2019-20 to fund the extension of care.

Local social work services undertake needs assessments to decide what personal care an individual requires. This can range from help with maintaining personal hygiene to help preparing food, assistance with medication and continence management.

First Minister Nicola Sturgeon made the announcement on free personal care provision that comes into effect next week as part of the SNP’s programme for government in September 2017.

Discussing the changes in parliament today, the First Minister said: “I commend all those who have campaigned for the policy. In particular, I commend Amanda Kopel, who is due a great amount of credit and gratitude from all of us for all her efforts.

“…I want to sound a note of consensus. Let us pause to reflect on the fact that the introduction of free personal care for the over-65s was one of the proudest achievements of this Parliament in its early years.

As we celebrate the 20th anniversary of the Parliament, it is really appropriate, and something that all of us should be proud of, that we are extending the policy to under-65s as well.”

A leading dementia charity in Scotland, Alzheimer Scotland has long been a stalwart supported of the extension of care, with the organisation’s director of policy and research, Jim Pearson, describing it as a “positive step forward for equality for younger people living with dementia and other long term or progressive illnesses”.

The national dementia charity welcomes the introduction of free personal care for everyone who requires it, regardless of age or income. Mr Pearson said:

Alzheimer Scotland wholeheartedly welcomes the extension of entitlement to free personal care to all who need it, regardless of age, from the 1st April 2019.

We congratulate Amanda Kopel for leading the Frank's Law campaign. This successful campaign compliments Alzheimer Scotland's Fair Dementia Care campaign”, Mr Pearson added.

In January, healthandcare.scot reported on the publication of Alzheimer Scotland’s fair dementia care for people with advanced dementia report, which highlighted that the costs associated with increasing levels of health and nursing care required by many dementia sufferers were not being met.  

Alzheimer UK’s campaign seeks to end a “glaring inequality by ensuring that people living and dying with advanced dementia have equality of access to the health care they need on an equal basis to those who have other progressive terminal illnesses, and which is free at the point of delivery”.

However, although welcoming of the introduction of Frank’s Law, Jim Pearson calls on Government to take further action on dementia:

“The extension of free personal and nursing care to people is welcome but does not address this inequality of access to health care in advanced dementia. We ask that the Scottish Government lead the way by committing to delivering fair dementia care.”

Find out more about Alzheimer Scotland’s campaign in healthandcare.scot’s interview with Henry McLeish at the launch of the fairer dementia care report.

Pictured - Jim Pearson (far left)