I chanced upon one such example this week on BBC Radio Scotland’s Kaye Adams programme when the case of Barbara Windsor prompted an invitation to phone in with experiences of caring for people with dementia.
It was harrowing stuff. A succession of articulate women shared first-hand experiences of how their lives had been turned upside down, their sanity challenged, their careers waylaid by the requirement to care for a family member who had developed dementia and continued to live at home.
From my days of MP’s surgeries, there is one phrase indelibly stamped on my memory. It usually came from strong women with little money and heavy burdens of care who would sum up their experience in the words: “You’ve got to fight for everything you get.”
I heard the same phrase used in this programme. One might have hoped that things would have moved on by now but there was no indication of any such advance. “Rights” are either illusory or shrouded in bureaucratic mystery. Carers still have to “fight for everything you get”.
At least part of the problem is that so much of the gatekeeper responsibility, to determine availability and cost of support, rests with local authorities. And since local authorities do not have the money for delivery, they tend to ration through complexity.
Caller after caller spoke with little affection about their dealings with social work departments while negotiating the labyrinth of options and entitlements. This is the sharp end of a politically convenient fantasy world in which councils are landed with responsibilities while the wherewithal to meet them is whittled away. Another feature of the discussion was the absence of reference to “free personal care”. When the legislation to underpin this concept was introduced by the Scottish Executive (as it then was) in 2002, it was rightly hailed as a noble and radical commitment, accompanied by warnings that it would only have meaning if properly funded.
Where are we now on that? The Scottish Government’s website continues to state: “Free personal care is available for everyone aged 65 and over in Scotland who has been assessed by the local authority as needing it.” I doubt if the callers to whom I listened would now believe that this acts as any kind of guarantee, capable of being invoked.
A couple of weeks ago, an Alzheimer Scotland commission chaired by former First Minister, Henry McLeish, reported on treatment of advanced dementia. Its central conclusion was that the resulting needs are “misclassified” as “a purely social care issue through which a disproportionate emotional and financial burden is placed on people with advanced dementia, their families, and carers”.
The report recommended that these should be recognised as healthcare needs and brought within the ambit of the NHS, free at the point of use. Meantime, the policies on which support is founded “are not consistently or readily available” and “unnecessarily complex and difficult to understand”.
For ordinary, decent people faced with this huge additional challenge in their lives, all that translates simply into: “You’ve got to fight for everything you get.” And it should not and need not be like that.
No matter who runs Holyrood, this will be a huge challenge with the certainty it is only going to grow, year by year. Putting under-funded local authorities in the frontline of dealing with it is not a sustainable or honest option.
Once again, following the ritual pas-de-deux between Nationalists and Greens, councils’ revenue budgets have been cut. Since 2013, they have been cut at four times the rate of Holyrood’s own budget.
There are many depressing manifestations of that cynical policy to be witnessed in every Scottish community and many households. I am grateful to that phone-in for articulating one of the most personal and acute.
A fundamental review of Scottish Government’s spending priorities is long overdue and it needs to recognise that every populist headline is being paid for by much more deserving needs.