I believe that whole person care, to be introduced by the next Labour government, will be brilliant for bringing together health and care professionals with persons with dementia, and carers and support workers. But we should also be extremely vigilant of dodgy presentation of evidence being used ‘in the name of’ campaigning for my pet subject, dementia, I feel.
We keep on being told that the ageing population is one reason why we can no longer afford the NHS.
The clinical syndrome of dementia, for which advanced age is a risk factor, has therefore taken on a special significance in this context. Health policy gurus and politicians are seemingly having to find increasingly elaborate ways to force their agendas on an unsuspecting public. “The Shock Doctrine: The Rise of Disaster Capitalism” (2007), penned by the Canadian author Naomi Klein, argues that libertarian free market policies have risen to prominence in some developed countries because of a strategy by some political leaders. These leaders deliberately exploit crises to push through controversial exploitative policies while citizens are too emotionally and physically distracted by these crises to mount an effective resistance. Crises are, though, useful instruments for bringing about change.
Within the timescale of this parliamentary term, the Prime Minister’s Dementia Challenge (launched in 2012) has seen a torrent of newspaper headlines with sensational memes. They invariably depict some sort of crisis in projected numbers of people with dementia, and have helped Big Pharma with the task of campaigning for increased funds to find ‘a cure for dementia’. The memes have largely had twangs of crises. For example, ‘dementia is the “next time bomb”‘ was an early news story from 7 May 2012. This messaging has continued consistently since, with the latest popular meme being “soaring numbers diagnosed with dementia“. Indeed, only recently with the arrival of the “Dementia UK (second edition) report” presented in a conference in Central London, a press release was published stating “Alzheimer’s Society calls for action as scale and cost of dementia soars”. But this messaging has caused utter confusion and resentment amongst leading academics and practitioners in dementia. The cumulative effect, instead, of such headlines and articles in public health has been to produce a feeling of ‘moral panic‘. As rightly pointed out by Dr Martin Brunet in “Pulse Magazine”, a well respected commentator on dementia policy in English primary care, recent evidence suggests rather that that the prevalence of dementia in over 65s in 2011 is lower than would have been expected. This “CFAS-II study” from Cambridge, which was published last year in the Lancet, is widely quoted, comprehensively peer-reviewed, and is extremely well known amongst people working in this field.
This is all incredibly self-defeating, as the “Prime Minister Dementia Challenge” was intended to bring greater awareness of the dementias amongst the general public not least to tackle the stigma faced by people living with dementia in their everyday lives. But you have to wonder what the intention of this approach is in the long term? The final report from the Commission on the Future of Health and Social Care in England (“Barker Commission”) was published on 4 September 2014. It discusses “the need for a new settlement for health and social care to provide a simpler pathway through the current maze of entitlements”. Labour intends to introduce ‘whole person care’ in the next parliamentary term, and it could be that this “scorched earth” approach for dementia has served a useful function. “Whole person care” is their new “big idea“. The Barker Commission recommends moving to a single, ring-fenced budget for the NHS and social care, with a single commissioner for local services.
On page 9 of their final report, the ‘ultimate star prize’ is described, the personal budget:
“Personal budgets, and care in hospital and out of it, would be provided from a single, ring-fenced budget. There would be one budget and one commissioner for individuals and their families to deal with, in place of health, social care and, in the case of those aged over 65, the Department for Work and Pensions. Commissioners would be freed to acquire care designed around an individual’s need for support and health care, largely dissolving the current definitions of what is a health need and what is a care requirement.”
And this of course is nothing new: it has been in gestation for quite some time. I myself, in fact, wrote about personal budgets for ‘Our NHS’ in my piece ‘Shop til you drop?’ on 4 September 2013. It is said that Andy Burnham MP, Shadow State of Secretary of Health, “welcomes the Barker Commission“, but one wonders whether he wishes openly to support the more unsavoury parts. Labour is desperately keen to introduce its policy changes on integrated care, without them being seen as another “top down reorganisation”. Any public resistance to their flagship policy will be political dynamite. Labour is instead currently campaigning on an anti-marketisation and anti-privatisation slate, and has pledged to repeal the highly toxic Health and Social Care Act (2012) (“the Act”).
One significant part of this repeal will be the abolition of “section 75″ and its associated regulations, which introduced competitive tendering in commissioning as the default option for NHS procurement. Nevertheless significant faultines in policy, described elegantly by Prof Calum Paton in his pamphlet “At what cost? Paying the price for the market in the English NHS” for the Centre for Health and Policy Interest (February 2013), still exist. They also are at danger of persisting, even if Labour triumphantly repeals the Act. There is a danger that unless these other pro-marketisation strands are addressed first, such as the purchaser-provider split, the “whole person care” policy will become engulfed in an intensely neoliberal direction. The counterfoil to this from Labour would presumably be that whole person care does not require a market in the first place. For this, clearly, Labour must not inflict personal budgets. A further big concern of mine is simple: not only will current scientific research into dementia have been completely misrepresented in the popular press, but also the field of dementia will be used to provide the raison d’être for yet another upheaval in service change.
And that upheaval could witness yet another change from the founding principles of the NHS. It could also be one too many.