WHEN The Herald launched its award-winning Dementia Campaign in October 2019, we made the point that dementia was Scotland’s biggest health issue with no effective treatment, and no cure.

Quoting the chief executive of Alzheimer Scotland, we noted that patients in the final years of their lives were facing “an injustice and an inequality” because they are forced to foot the bill for specialist nursing care, unlike those suffering from other terminal illnesses, such as cancer.

Families faced difficult choices to fund specialist nursing that should be a basic right, the article continued, before issuing a rallying call to the Scottish Government to end “this unfair disparity in care costs”.

Nearly three years later, nothing has changed. All the major political parties signed up to to The Herald’s campaign, but the so-called ‘dementia tax’ remains in place. People with advanced dementia still pay to be looked after in care homes, while others who have cancer or heart disease continue to receive medical treatments free at the point of delivery on the NHS.

Will it eventually come down to one of the opposition parties at Holyrood seizing the moment and introducing a Bill for discussion?

Self-funders pay so much more that in essence they are subsidising the non-payers. And though they do receive personal and nursing care contributions, these have little bearing on the actual costs of care.

Many ordinary families are, in addition to the anguish stemming from an elderly parent being diagnosed with dementia, extremely uncomfortable when the parent’s house has to be sold, and their savings depleted, in order to fund necessary, expensive round-the-clock attention in a care home.

The Labour MSP Alex Rowley referred in these pages yesterday to people who had made lifelong contributions to our economy and society now seeing their savings “stolen” in “astronomical charges” levied by private care providers.

He made his intervention after finding that self-funding care-home residents are paying almost £69,000 for accommodation alone in some areas of Scotland. The average figure is £51,000. Even without the inclusion of the cost of care which councils contribute towards, the costs seem high.

The Alzheimer’s Society has put it more succinctly: it estimates that a typical person’s bill for dementia care would take 125 years to save for.

Private care-home providers argue that they must factor in higher energy and food bills and pandemic-related costs, and that the National Care Home contract determines the fees that they receive from local authorities.

Nevertheless, Mr Rowley was on safe ground when he pointed out that in private care homes, where many staff are fortunate to earn £10 an hour, self-funding residents are being charged, on average, £1,000 per week. He demanded urgent action from the Scottish Government to end what he described as “a scandalous rip-off and exploitation of our older citizens”.

All of this comes on top of researchers finding that the distress caused to care-home residents by months of severe restrictions during the pandemic may have led, in some cases, to deaths.

Academics also questioned the legal basis for confining residents to their rooms and banning visitors; there was, they added, “little evidence” that the human rights of residents or of their families had been taken into account.

The Scottish Government’s National Care Service has much to commend it, even if concerns have been raised about the £1.3bn in public funds that risk being diverted from frontline services in order to establish it. The centralised nature of the planned scheme has also drawn the fire of unions and opposition parties.

Emphasis has properly been placed on adults being supported in their homes by their own families, on a social-care charter of rights and responsibilities, on visiting-rights for residents who live in adult care homes. There is, too, a focus on prevention and early intervention.

Ministers are keen to abolish all home-care charges, which would benefit those patients who continue to live in their own properties and would thus be spared the high cost of moving into a care home. It is a laudable aim, but such an option is not suitable for everyone. There will always be a need for care homes.

What of the future? Could we see a more individualised approach to care, and to care costs?

The UK government has done more than its Scottish counterpart, having capped personal care costs at £85,000 and weekly living costs at £200. It’s not straightforward, and it does mean that rich people are in a better position as £85,000 is, relatively speaking, a drop in the ocean for them – but at least they have put a cap on the cost.

Would Scots be willing to pay slightly more in taxes in return for reassurance that, when the time comes, they will be cared for properly? Other ideas are worth exploring, such as intelligent solutions to aged care, such as communal living, and better retirement villages.

Whatever happens, the unignorable wider reality is that dementia will continue to pose a potent threat to the health and social care systems of the future. A study earlier this year said that the number of adults worldwide living with dementia is set to triple to 153m by 2050 – due not simply to ageing and to population growth but also to obesity and smoking.

Concerted global action, in terms of prevention and early intervention, has never been more important.

 

 

The rail strike and the Tories’ Lynch mob

AT a time when the Conservatives and the right-wing press demonise the RMT union boss Mick Lynch amidst the disruption of the rail strikes this week, it is disconcerting to see a Conservative-leaning journal actually supporting him.

The Spectator notes accurately that Lynch has “made mincemeat” out of politicians and broadcasters by Lynch and his “mature, considered and, yes, gruffly charming manner”. He easily bested Sky’s Kay Burley when she unwisely sought to evoke memories of miners’ pickets from the 1980s.

Cabinet ministers have tried to make political capital of the RMT’s strike action, but have floundered. Lynch’s astute approach has seen a surprising number of commuters sympathising with or at least understanding his union’s stance in defence of conditions, including a refusal to countenance compulsory redundancies.

And despite the disruption caused by the strikes his statement that “every worker ... deserves to negotiate a pay rise and bargain on their conditions” seems to have struck a chord after several years of stagnant wages.