Frank’s soulmate hopes for a positive campaign outcome

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This could be a crucial year for Angus health campaigner Amanda Kopel who is hoping to see a successful conclusion to almost four years of lobbying the Scottish Government.

Her husband Frank died in 2014 after a public battle with Alzheimer’s.

The former Manchester United and Dundee United player began the campaign with his wife.

Amanda has continued the battle for free personal care for under 65s who have a debilitating condition such as dementia, motor neurone disease, multiple sclerosis or Parkinson’s disease.

The Scottish government is currently conducting a feasibility study into extending personal care, which health secretary Shona Robison has said is on course to be completed by the summer.

And Amanda, from Kirriemuir, is keeping her fingers crossed for a favourable outcome.

Frank was diagnosed with vascular dementia and Alzheimer’s in 2008 when he was just 59.

His family had to pay around £300 a week on personal care towards the end of his life – Frank was eligible for just 19 days of free care before his death at the age of 65 in April, 2014.

They even had to sell some of his cherished memorabilia from his 18-year career as a top flight footballer to help meet costs.

Ultimately, Amanda wants to see the introduction of Frank’s Law, granting under 65s the same personal care rights as older people from the point of their assessment of need.

Although the campaign has gathered wide support, and cross-party backing in Parliament, it is being resisted by the SNP administration.

It is the latest stage of a struggle which has seen Amanda’s hopes raised before.

She said: “Come June it will be four years since Frankie and I started the campaign.

“Shona Robison, who I have been in a few meetings with, has said the current feasibility study is looking at the possibility of extending free personal care to the under 65s, not just with dementia but with other conditions.

“I’m delighted that she’s now including other people. I’ve said all along it’s not just about dementia but about looking after anyone who has a condition or disease who might need personal care.

“Not everyone under 65 is going to need it and if they reach 65 they’ll be lucky enough to receive it free anyway, as the law stands.

“One second is all it takes to make a difference to someone’s life for getting personal care.

“Up to midnight when they turn 65 anyone with a care package will pay for it – after midnight they won’t.

“Really, what is the difference between someone who is 64 and someone who is 65?

“My battle is nothing compared to the battle Frankie went through but watching his strength, courage and dignity has given me the strength to carry on.”

Several reviews have already been undertaken but the change has been dismissed in the past as being either too expensive or just not feasible, both of which she refuses to accept.

“People are living in hope and are constantly seeing their hopes dashed with excuse after excuse, and they can only make so many excuses,” said Amanda.

“Now they’re doing another feasibility study and I’m hoping they’ll say yes. It has given me a bit of hope.

“It’s important to emphasise that care should start when they’re assessed as needing it, not when they’re diagnosed – there is a big difference in cost.”

Shona Robison last week told Holyrood’s public petitions committee that legislation would have to be deliverable, fair, affordable and consistent and the aim of the study was to establish options for the way forward.

Amanda added: “The campaign is about justice and equality for all and many organisations and companies are supporting it.

“It’s crunch time. If, after this feasibility study it’s a yes, I can properly grieve for my soulmate, which I haven’t been able to do.

“If it’s a no, I’d have to go to the Scottish people and ask if they think it’s the right decision as they’ll have seen their hopes dashed again.

“There were a couple of times when I could have just torn up the campaign – the day Frank died and two years ago when I turned 65.

“But I didn’t because I’d have been letting Frankie down, as well as all the other people under 65 at the most vulnerable time of their lives.”