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A need for ‘dementia awareness’ for some English commissioners?

It’d be wrong for me to suggest to commissioners how to do their job. I have met very few commissioners, or indeed managers in health or social care. When I was a junior doctor at major teaching hospitals in Cambridgeshire and London, I had met none in fact. I think living with a condition, and knowing how to prepare for a good death when the time comes, are positive things – overmedicalising someone emphasising illness overly, at the expense of appreciating personhood, is not helpful?

I perceive increasing ‘dementia awareness’ as very important, in fact. I included a section on the “Dementia Friends” programme, delivered by the Alzheimer’s Society and Public Health England, in my second book on dementia (“Living better with dementia: good practice and innovation for the future“); my first book, based on the NICE QS30 standard for promoting wellbeing in dementia, won best book of the year award for health and social care for the BMJ Book Awards in 2015 (click here to download the pamphlet on this).

The background is as follows. We are now fast approaching 1 million people in the UK living with dementia, and dementia is the most feared condition amongst adults. This fear can inhibit people from seeking a diagnosis, often leading to social isolation and loneliness at a time when support and care are crucial. “Dementia Friends” was intended to bring about a social movement so that people with some knowledge of dementia could help to combat stigma, prejudice and discrimination against people living with dementia.

It clearly is not enough to view success as the “number of friends”, as this gives you absolutely no indication as to the quality of understanding of the efficacy of an awareness campaign, in much the same way a political leader might be criticised for reading too much into the size of his rally. For some time people have been asking for some more sophisticated qualitative feedback on the efficacy of Dementia Friends, given the millions of pounds of taxpayers’ money invested in it; and no such information has yet been forthcoming.

That ‘awareness’ campaign, I see, as very much on the basic tier of education. On a much higher tier, there’s a need to have a framework for identifying a basic set of skills, knowledge and behaviours for dementia, and a good contribution to this is the “Dementia Core Skills Education Framework“.

One could legitimately ask what the point of the National Clinical Director for dementia is. Why legitimately? Prof Sube Banerjee, who co-wrote the 2009 English dementia strategy, has justified why such a strategy exists (in part his answer included raising the stakes of the importance of dementia given the size impact of dementia on society.)

But part of Prof Banerjee’s answer has always been a need to identify some sort of strategic vision as well as tactics – and this I feel is something to do with the issue of ‘why national?’ The five year English dementia strategy was never renewed after it expired in 2014, only to be succeeded by a number of unwhelming piecemeal contributions from the Department of Health.

There could have been an attempt to flesh out the elements formally of an integrated care pathway (such as preventing well – diagnosing well – living well – caring well – supporting well – dying well – grief), but apart from a blogpost from Alistair Burns there is not much written about this from the Department of Health. Whenever this, anyway, is presented in public, the abject failure to include ‘caring well’ speaks volumes.

It’s as if the contribution of specialist professionals to dementia care is on occasion wilfully airbrushed out. Whatever your opinions about residential homes, it is a fact that there are hundreds of thousands of people living with dementia and other co-morbidities in care homes, and therefore their right to health, enshrined under international law, is of fundamental importance to their wellbeing (codified in s.1 Care Act 2014). But the health of people with dementia is of course of fundamental importance to the rest of the system, take for example admissions, readmissions or delayed discharges.

It’s simply inadequate to let all commissioning decisions be driven by the bottom line and the notion of ‘avoidable admissions’. The theme of avoidable admissions is potentially dangerous in framing a hospital admission as failure. Young people (below the age of 65) live with dementia too, but the older you get the more likely is your chance of developing one of the hundreds of dementia, and with this an increased likelihood of a need for health and social care services. An unintended consequence of ‘avoidance admissions’ is furthering a culture of institutional ageism; what a previous consultant of mine in a prestigious flagship tertiary centre for general medicine used to warn me as ‘don’t stuff my wards full of old people on frusemide’.

I have contemplated before whether you need experience of something to manage it. For example, there are professors of haematology who’ve never had a blood disorder. This is sometimes put in the phrase: “you don’t need to have been dead to be entitled to go to a funeral”. It’s something I mused over when studying 360feedback as part of my specialist performance management training in my MBA.

But the impact of the importance of physical and mental health is undeniable. If you feel that some residential homes can inadvertently appear to have a closed culture, being at worst perceived as ‘fortresses’ or ‘prison states’, it is surely unacceptable for people languishing in care homes without their health needs being met. I might be talking about a person with capacity problems  having trouble communicating, but a difficulty exacerbated by the fact his hearing aid batteries ran flat months ago. Or a person with dementia with the occasional hallucination having real trouble in perceiving reality, a handicap made worse by the fact the NHS has delayed her cataract operations many times.

Vic Rayner is the executive director of the National Care Forum. Vic is excellent.

Her blogpost of 26 February 2016 (yesterday) caught my eye.

Take this section.

Where the heart is

The majority of growth in care home beds across England is in dementia specialism, with a national figure of 90%, and a not for profit comparator of 85%. This is not surprising in the context of commissioning priorities, and the raising of social care thresholds. However, what is interesting is the proportional growth in residential provision in the not for profit sector, in comparison to the wider UK sector. Two thirds of growth in the not for profit sector was in residential provision, and one third in nursing – in contrast to the growth patterns across the sector as a whole which have favoured the development of nursing provision over residential. This was mirrored in the closure patterns in the not for profit sector, where more care home beds were lost from nursing homes than residential settings.

We know that recruitment of nurses to the sector is a key issue for NCF members, and earlier this year NCF produced, in partnership with Skills for Care, a powerful document outlining the contribution of nurses to social care. In addition, the long awaited increase in NHS funded nursing care rates may encourage more not for profit care providers to think more positively about growth in nursing.”

I am all aware that as ever ‘money is too tight to mention’, but I really can’t emphasise enough that the health and social care systems really do operate as one. The distinction between health and social care for dementia is unacceptable.

The amount we’re prepared to spend nationally on health and wellbeing should not be an issue which we only contemplate conveniently at the time of Government spending rounds. And just because we ‘ringfence’ NHS spending does not mean we should be prepared to see social care implode and be driven to its knees. Nearly a fortnight ago, the King’s Fund and Nuffield Trust published a graphic and damning report “Social care for older people“, identifying some of the problems in the reality of provision of dementia care – including domiciliary care.

CCGs, clinical commissioning groups, are by law statutory insurance schemes, so they take a decision of spending based on their assessment of risk in a defined population – except no-one knows the ideal size of this population. This lends itself to liberalising the market, or atomising policy decisions. If then you reduce policy to the local level, coincidentally maximally convenient for rationing of scarce resources, and you approach national care through personalised health and social care budgets or postcode prescribing, then you might well ask what the point of a National Director for dementia actually is, together with a national strategy for dementia which expired two years ago?

I am mindful that as things get more frustrating the tendency is to look for people to blame, but, in the best spirit of an organisational learning culture, I would like to suggest that some input from experienced professionals and practitioners is necessary now in running of the NHS and social care in dementia. It might be heard to measure the impact of a clinical specialist nurse on care continuity across different care settings, on palliative and end of life care, on advice about caring for the carers, but not everything one values can be easily measured in monetary terms. As it happens, it is easy to make a financial case for clinical specialist nurses for their impact on avoidable admissions, which I mention earlier.

But I do think the health and social care for dementia would be massively improved for awareness for those commissioners who would like to ‘brush up on their skills’. This means less attention to shiny new product gimmicks, less time on Adobe Illustrator making sexy infograms, less time counting the ‘number of friends’ – but actually doing something to promote high quality patient care at the grassroots.

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