It can’t have escaped you that the pound has recently taken an enormous battering. The pound has fallen by almost 20% against the dollar since the Brexit vote, trading below $1.22 and €1.10 on Monday, which is its lowest level against the euro since March 2010. It was reputed to have hit a 31-year low, then a 138-year low. But I don’t want to moan.
There is thankfully enough money to subsidise investment bankers in the City so that they can retain inclusion in the single market. Billions can also be spent on HS2 or on foreign wars. You see, these “free market” luvvies folks are suddenly all pro state intervention and public funding when directed at certain people.
You can of course decide to leave the entire English dementia strategy to the free market. Instead of recapitulating on the original Dementia strategy of 2009-14, “Living well with dementia”, the script suddenly stopped, only to be replaced by near annual piecemeal statements. A laissez faire approach meant that, apart from national diagnosis rates, scrutinised to create new markets, the level of planning at the personal budget was allowed to flourish instead of a national idea of what is going on.
Of course, not all people with dementia are bitesize individual units. The late great Tom Kitwood used to emphasise the interconnectedness of us all as human beings. Most people believe that the essence of care is experienced in the moment when one person connects to another. Defining the meaning of care is stuff dreams of nursing education are made of, but is hard to escape that “caritas” comes from the Latin word meaning to cherish, to “appreciate, to give special, if not loving, attention to”. It represents charity and compassion, and generosity of spirit. It represents something precious that needs to be cultivated and sustained, often lost arguably with competition and CQUIN targets, some might say.
The Prime Minister’s Challenge on Dementia 2020 Implementation Plan prepared by the Dementia Policy Team speaks to the language of commissioning, personal budgets, big-pharma funded research. However, in the real world, we KNOW that being a full-time carer is a very demanding role, and that according to the 10-yearly censuses from the National Office for Statistics the number of unpaid family carers continue to sky-rockets. Respite care breaks are an opportunity for carers to take a holiday or simply spend some time looking after their own needs, safe in the knowledge that their loved one is receiving the very best care. And respite care can be a chance to meet new people, enjoy a change of scenery and try out some new activities and experiences.
Overall as a society, there needs to be a much greater recognition of how to support carers to do what they very much want to do and well, and indeed I am happy that the new NICE guidance on dementia in August 2017 will address this, yet further research, I feel, is needed to understand how family carers of people with dementia can be best supported and how resilience may contribute to the health of adults.
As two thirds of all people with dementia live in their own home, either alone or with family carers, it is vital that domiciliary home care providers are able to demonstrate good practice. I am happy that the Dementia 2020 speaks to “care planning”, but the reality is inescapable.
Look for example at p.6 of“Social care for older people” King’s Fund September 2016:
“Our assessment of national data and in-depth interviews in four unnamed local authority areas found that the past six years have also brought huge pressures on the social care market. Central government grant reductions to local authorities have been passed on to care providers in the form of reduced fees, or below in ation increases. Combined with shortages of nurses and care workers, higher regulatory standards and the introduction of the National Living Wage, this has put many social care providers under unprecedented pressure.
Many social care providers are surviving by relying increasingly on people who can fund their own care, but those dependent on local authority contracts are in difficulty. Home care services face particularly acute workforce shortages and are now in a critical condition everywhere, threatening to undermine policies to support people at home. e possibility of large-scale provider failures is no longer of question of ‘if ’ but ‘when’ and such a failure would jeopardise continuity of the care on which older people depend.”
You can therefore see at once that the language of “creating dementia-friendly health and care settings” in no way cuts it.
The Dementia 2020 vision consolidates the approach of prevalence, preventing well, diagnosing well, living well, supporting well, dying well. But where’s the “caring well”?
It could be that ‘caring well’ is subsumed under ‘supporting well’, but caring is substantially more than supporting. And take for example the aspect of caring which is mentioned in Dementia 2020, there is barely a mention of an infrastructure of electronic patient records neither at national or cluster-bombed transformation local level.
I was aghast to see that “respite care” and “domiciliary care” do not feature in Dementia 2020, along with “caring well”. And nor do clinical specialist nurses, which I indeed wrote about at great length recently with Karen Dening, head of research and evaluation at Dementia UK.
I believe clinical specialist nurses, including Admiral nurses, act as a glue in holding people together, for example providing specialist practical advice, and emotional and psychological support from diagnosis to post bereavement; acting as a single point of contact, helping to join up different parts of the health and social care system and meeting your needs in a coordinated way; and offering advice on referrals to other services and liaise with health and social care professionals.
But not needing to care well helps make savings which are modest even compared to the marketing budget of ‘Dementia Friends’.
Caring well potentially saves money for the NHS too, say for example in enhancing health in care homes, so the acute departments of the NHS don’t see as many incidents of falls, fractures, infections, mobility problems, delirium, sensory impairment, and so on; and of course a worthy goal in itself in improving the wellbeing of people including in residential care.
On October 11th, Chris Hopson, CEO of NHS Providers, told the Commons Health Select Committee that leaders of the forty four English Strategic Transformation Partnerships were working on plans which are “at risk of blowing up”.
The CQC didn’t mince its words either recently in its ‘State of Care’ report.
On the BBC’s Today Programme yesterday, Jeremy Hunt confirmed he was “putting together plans” to find £22bn in efficiency savings by 2020. Hunt’s words appeared to confirm reports that Theresa May had told health chiefs the NHS would receive no extra money as a result of Brexit.
In this brave new world, it’s not only the £ which is plummeting, but also trust in some of the senior leaders of Big Charity, government and the NHS. The tragedy of it all is that it might not be accident, and is in keeping with an approach made popular previously of “the small state”.
Ronald Reagan, as President of the United States in the 1980s, also had a ‘deficit problem’ and little prospect of balancing the budget in the near term, further forcing a shift in the responsibility for social and health services to states and localities. In this environment of fiscal restraint and small government ideology, policy approaches promising a “cure” were likely to prevail over those of “care”.
In this ideological boom of political and cultural conservatism, it is little wonder Jeremy Hunt talks of the clearly inane talk of ‘making every pound count’ when funding for dementia care is on its knees. And expunging ‘caring’ from Dementia 2020 is to put out of sight a resource-intensive activity, falling predominately on women in many jurisdictions, which is neither perceived “budgetable” nor appreciated at the policy level. This cumulatively has helped to legitimise the biomedical framework that deviates public support away from caregivers, as it feeds the hope for effective treatments or a cure for dementia, but we can no more await eagerly a cure for dementia by 2025 than we can expect figures on the side of a bus to come true.
Sadly, the English dementia policy bus has skidded off the road into the ditch, entirely due to political ideology, and nobody appears accountable in this revolving door environment of top jobs.