Henry McLeish on inequities in advanced dementia care

Dementia Commission chair calls on local authorities to act

Tuesday 22nd January 2019

This week saw the launch of the Delivering Fair Dementia Care for People with Advanced Dementia report.

The publication is a culmination of work commissioned by Alzheimer Scotland and undertaken by a group of experts, including Professor Debbie Toulson, director of the dementia policy unit at the University of the West of Scotland, and Prof Jo Armstrong, economist and researcher from the University of Glasgow.

Commission chair and former First Minister, Henry McLeish, spoke to healthandcare.scot’s Sarah Nimmo about the need to move dementia further up the scale of political reckoning in Scotland…

Free personal care for the elderly was introduced in Scotland in 2002 through the Community Care & Health (Scotland) Act. In the light of that experience, Henry McLeish offers his thoughts on whether legislative changes will again be needed to implement some of the recommendations of this group’s report on care for people with advanced dementia:

I think there will be a legislative context for all of this because if you are involved in making changes about finance, relationships and responsibilities between different bodies, then I think you will need legislation.

“But on the other hand, we can make some progress right away because, for example, local authorities have tremendous powers and should feel independent of government. They should be able to take it upon themselves to act. If it’s 32 different councils framing the policies that cover financing and assessment, they could move quickly. So I think there’s a combination of possible legislation but things each body can be doing to move this forward.”

Inescapable though are the financial pressures faced by local authorities and others, and the impact this has on any appetite or ability to invest in services.

It’s a difficult context because there are major problems”, he concedes. “Local authorities are under enormous pressures and austerity is still to the fore in Westminster - that impacts on the Scottish Government and that in turn impacts on local government. This is not a good time to be suggesting major shifts of cash. But, on the other hand, when is there a good time?

Focusing on his point that dementia care “needs to move further up the political reckoning in Scotland”, Mr McLeish says he does feel dementia care is on the radar of the Cabinet Secretary for Health & Sport, Jeane Freeman, and her government colleagues.

I also think it’s on the radar of local authorities because local authorities traditionally have an independent streak to them and should be looking at what they are doing and reassessing, and that’s difficult in the current financial climate.

“We want warm words, yes, but we then want to look at the picture going forward and see how we can slot change in.”

Those attending the launch heard from two individuals with extensive experience caring for a loved one with dementia, providing an insight into what it can be like trying to access the right care at the right time.

Prominent in both stories was the financial burden that can fall on an individual with dementia and their family. They explained the complex care needs that accompany advanced dementia, combined with varied funding arrangements that rarely cover the majority of an individual’s care costs on the basis that they are social care needs and not healthcare needs, can add financial worries to already emotionally and physically demanding roles as carers.

Keen to emphasise to wider audiences that addressing inequalities experienced by those with advanced dementia is fundamentally about fairness in healthcare provision, Mr McLeish decries the “impenetrable” process of assessments that carers and their loved ones have to navigate to access funding.

What I’m trying to impress upon people is that this is about fairness: we have a jungle of assessments that are not helping those that are most vulnerable. We have a situation where healthcare needs should be to the fore and not social care needs, and for advanced dementia this would reclassify a number of peopleIn government this is a priority in terms of fairness - you cannot continue to run a system which is so manifestly broken as is the assessment of care and financial needs. So therefore we need to move and I’m hopeful.

Now I believe there is no good time to make changes like that but on the other hand we need to make a start; to start the dialogue.It may not shift resources quickly but I think as long as we accept and acknowledge there is an injustice at the heart of this that should be addressed.”

And Henry McLeish believes free care is a component of preventative spending: “What has never been factored into this is the savings this makes for the National Health Service and the hospitals on that side of things and what we have is a very narrow assessment of costs and benefits.

The cost to the health service of taking on board what we are suggesting is that we free up valuable resources in both local government and the health service. What it does mean is that people who are in dire need get the services and then we can look at a later stage about the distribution of resources.”

The former First Minister acknowledges such change is complex and difficult to do but is unapologetic.

At the end of the day we must look at all the circumstances and all we are asking for are not miracles; we are saying that we have moved well in tackling dementia but we need to go further now - we need to clean up some of the inequities that exist.”

 “What our report has attempted to do is to lift the lid off a situation that need not carry on if enough people think there is an injustice.”