Caring well

We need a national dementia strategy for England, and not merely a ‘plan’

I don’t intend this blogpost to become a ‘whinge-arama’ or ‘whingethon’ about all that is wrong in English dementia policy. There’s a lot that it is right, which is a testament to the current people leading this whether in social care, NHS or third sector, and not least to the voices of people living with dementia and their closest who care.

I think the strongest part of the overall ‘dementia offering’ is the ‘plan’ for research. Whilst nobody would want to be where we are in terms of care, whether it be the financial sustainability of care homes or delayed transfers of care/discharges, the aspiration for research into quality of care is very much to be rewarded.

Care England

I am actually hugely positive about the research arm of the 2020 Dementia Implementation Plan. And to be overly critical on the aspirations for neurochemical research would be somewhat unjust, though an overall objective in strategy would be to continue translationary research and clinical drug trials, but conceding that we need to learn from failure and that there is unlikely to be a ‘big bang breakthrough’ but rather some interventions for particular types of dementia. Notwithstanding, I love the ‘hub and spoke’ and drug discovery work. I should also like to have seen a commitment to high quality research into cognitive therapies. The strangehold of drug based research on Alzheimer’s disease as opposed to the hundred other forms of dementia has to be broken somehow, even though there is a massive financial bias here and Alzheimer’s disease is purportedly the most prevalent type of dementia in the UK.

For true validity, it’s important that people with dementia don’t simply get reduced to brand ambassadors for Big Charity, and, to be fair, to suggest this was the case would be a great disservice to the current state of play. However, it is of substantial concern to me that in the current roll-out of the 2020 Dementia Implementation Plan that ‘caring well’ might have become an oversight. And of course the experts-by-experience are not ‘to blame’ for this; the ‘experts’ leading on policy on England need to come up with a more than a soundbite why we’re not strongly promoting actively family carers, undervalued carers of all forms, respite care, clinical specialist nursing care, social care, domiciliary care, and so on. The 2020 Dementia Implementation Plan talks about tangible measurable benefits of policy, but it was only last night that the BBC made reference in their lead news story to dementia as ‘a devastating disease’, and people living with dementia as “dementia sufferers”, in a state of language presumably designed to exacerbate further fear, stigma and fundraising. The lack of qualitative outcomes remains painfully absent from the flagship multi-million pound campaign from the Alzheimer’s Society and Public Health England called “Dementia Friends”.

The background has been extensively rehearsed elsewhere.

According to the Alzheimer’s Society, there are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. It is currently estimated that this number is set to reach 2 million by 2051.

We’re currently (theoretically) in the first part of a biphasic implementation plan for dementia in England. The lack of coherent strategy in England for dementia is not a trivial one. The five year strategy for England, published by the Department of Health, entitled ‘Living well with dementia‘, expired in 2014. Since then, there have been piecemeal documents which can best be described as progress reports in follow up to the 2012 Prime Minister Challenge on Dementia. But I’m very much mindful of a piece for Harvard Business Review entitled ‘Don’t let strategy become planning‘. It might be comforting to have a five-year plan but this Government, which loves liberalising towards the free market, is far from, ideologically, Stalinist Russia.

Correctly stated in the article:

“To make strategy more interesting — and different from a budget — we need to break free of this obsession with planning. Strategy is not planning.”

A similar article in the same vein is “A list of goals is not a strategy“. The current 2020 implementation plan while a very good list of goals, I feel, hits way short of the mark. Even if you were to believe that all stakeholders are rational decision makers (which they are not), this plan makes no attempt to address the underlying landscape of much important in dementia. It’s undeniable for me that it is not a case of ‘mission accomplished’ for dementia awareness (especially amongst commissioners), tackling stigma, and combating discrimination and prejudice.

But one would be most unwise to deny a landscape, which has various political influences (such as the infamous ‘sustainability and transformation plans‘), the economic landscape (national and local spending priorities including living wage and social care ‘precept’), social (for example social inclusion, the drastic cuts in social care from the last few years), technological (including the ‘internet of things’), legal (for example recent legislation yet to be repealed turbo boosting market competition in the NHS and introduction of ‘social value’) and environmental (for example the importance of green spaces and built environments in England, along with the more marketable ‘dementia friendly communities’). (It’s staggering how much #Brexit will affect the provision of care and EU research funding, which will have to be addressed in phase 2 of the Plan now.)

I have to say that I essentially agree with @rochfordbrennan‘s words – so I have no idea why England’s so blasé about having a national strategy.

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It is well known that many stakeholders expected a ‘lessons learnt’ log of the experience of the 2009-14 strategy. I have no doubt that the 2009-2014 “five year strategy” went a long way to closing the ‘diagnosing’ gap (and the concomitant ‘assessment gap’ through memory clinics and the such like), but I am left wondering whether it raised expectations for closing a ‘post diagnostic support’ gap. The declaration made in January 2016 was all pretty predictable stuff,  but one would expect a benefit of more diagnosis not simply to be more certificated deaths from dementia given the current state of play in social care and the NHS. This would have been very useful in guiding the future – in other words, knowing what worked and what didn’t.

Back to the notion that ‘a list of goals is not a strategy‘, the glaring democratic deficit with the NHS and social care workforce is witnessed in the three questions asked by the author; they are,

  • Identify which stakeholders you depend on for success.
  • Recognise what you want from your stakeholders.
  • Recognise what your stakeholders want from you.

Doing a text search for ‘social care’ reveals references to social care only in relation to ‘health and social care’ and integration, framing the rôle of social care as an ‘add on’ to health rather than a pivotal discipline on its own.  There is a single reference to ‘domiciliary care’, in the context of ADASS e.g.  this on p.52, and a related point 5.95 on p.45

Encourage its members to ensure that commissioned services contractually specify the minimum standards of training required for providers who care for people with dementia including residential, nursing and domiciliary care settings.

From conversations with clinicians I’ve met, as well as individuals who’ve received a diagnosis of dementia and those who care, I find that acknowledgement of some key issues would be strongly welcomed. Dementia never travels alone, in other words it’s very rare for a person to have dementia as the only medical issue, and it impacts in an unique way on friends and family. It is marked by exquisite complexity, which means that you need flexible, adaptable and adequately resourced systems to address needs. And people with dementia, not least because dementia can be a very disorientating condition, benefit very much from a person-centred integrated approach where continuity of care is king.

There is a sense of the tactics from the Department of Health documents, whoever actually wrote them, but it is totally unclear what the overall strategy is currently. As Sun Tzu said in ‘The Art of War’, 人皆知我所以勝之形,而莫知我所以制勝之形, in other words “All men can see these tactics whereby I conquer, but what none can see is the strategy out of which victory is evolved.”

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Examples of where the 2012 aspirations have somewhat fallen apart are noteworthy.

Take for example, the “key commitments” given on p.6 of the Prime Minister Challenge on Dementia.

Under the first section entitled “Driving Improvements in health and care“, it was written:

Financial rewards for hospitals offering quality dementia care
From April 2012, £54m will be available through the Dementia Commissioning for Quality and Innovation (CQUIN) to hospitals offering dementia risk assessments to all over-75s admitted to their care. From April 2013, this will be extended to the quality of dementia care delivered. Also for April 2013, access to all CQUIN rewards will be dependent on delivering support for carers in line with the National Institute for Health and Clinical Excellence (NICE)/Social Care Institute for Clinical Excellence (SCIE) guidelines.

But this quickly fell into problems.

In an article “GP dementia payment scheme will end next year, NHS confirms” BMJ 2014; 349 (published 28 November 2014) Adrian O’Dowd wrote,

“A controversial scheme that pays GPs to improve their diagnosis rates of dementia cases will not continue after next spring, the NHS has confirmed .. The national enhanced service known as the Dementia Identification Scheme, launched last month by NHS England, pays GPs £55 for each additional patient on their list with a new diagnosis of dementia.From the outset the scheme was intended to run only from October 2014 to March 2015, but it proved to be unpopular with doctors’ representatives and charities. It was designed to help the government hit its targets on dementia diagnosis rates in 2015, but it was described as unethical by many, including GPs themselves.
”

The quality of dementia diagnosis matters. It was claimed yesterday that “Last year, more than 61,000 people died of dementia – 11.6% of all recorded deaths”, and yet there are supposed to be 850,000 people living with dementia in total in the UK.

Under “Creating dementia friendly communities that understand how to help”,

“Awareness-raising campaign From autumn 2012, we will invest in a nationwide campaign to raise awareness of dementia, to be sustained to 2015. This will build on lessons learned from previous campaigns and will inform future investment.”

It is not sufficient to talk about ‘dementia friendly communities’ in health and care settings. As far as the delivery of person-centred care in acute care is concerned, for example, there are wider issues in addition to training of the workforce, such as ‘boarding’ of patients with dementia on inappropriate outlier wards, changing medical teams during a single admission, rota gaps, and so on. It also refers to staff being supported well, and not ‘burnout’. We know from the subsequent Royal College of Physicians report, entitled ‘Underfunded, under doctored and overstretched‘, there are noteworthy pressures on physicians delivering high quality care. The overall environment is much more than the quality of the décor.

Whilst it is invariably the case the work done by volunteers and others for ‘dementia friendly communities’ is superb and should not be discouraged, the term ‘dementia friendly communities’ is entirely bogus. Firstly, ‘friendly’ more than denotes an air of ‘does he take sugar?’ reinforcing the notion of people with dementia as some underclass who comprise a burdensome homogenous group of people acting as passive recipients of services. Secondly, the co-morbidity in dementia is substantial, so any environments which are ‘friendly’ to people with dementia should really be friendly to all (including those who are old and might have physical impairments such as sensory impairments or mobility difficulties.) And again – perhaps to advance localism – there is nothing ‘national’ about it, for example improving national transport networks or improving the national infrastructure for high-speed broadband, but I concede the strength of dementia friendly communities is undoubtedly in strengthening a sense of local community.

70 per cent of people in care homes have dementia or severe memory problems. But the state of play for care homes is currently dire, and this is bound to have an impact on the quality of a ‘dementia friendly community’ in the residential setting.

ADASS tweet

The English dementia approach for 2015-20 has therefore been a totally underwhelming piecemeal response which runs a series of goals rather than higher level strategic vision. The lack of meaningful stakeholder involvement with the frontline practitioners and other professionals working in clinical care is painfully clear. The 2020 Dementia Implementation Plan, run as a series of goals which read as justification for decisions on a balance sheet, is a boring shopping list designed to improve the brand value of an élite few. Expecting a handful of people with dementia who might have ‘influenced’ the work somehow to market the work in public engagement meetings is the height of crass behaviour from a select cabal protecting their vested interests. This is of course epitomised in the shameless lack of ‘caring well’, justified as being alternatively branded as ‘supporting well to provide meaningful care’.

Caring well

Littered through the 2020 implementation plan are countless omissions. For example, there is no mention of hospices in the entire document. There is indeed some discussion of the Department of Health, to “work with NCPC to establish a pilot scheme to give care home staff and carers the knowledge, skills and behaviours to deliver co-ordinated, compassionate and person-centred end of life care for people with dementia”, but there needs to be a focused aim to deliver palliative and end of care in all care settings, and to focus efforts on research here too.

One wonders whether we will return to having a policy in 2021-2025 nationally, to mitigate against the ‘postcode lottery’ of personal integrated budgets or personal genomics. If there is no national strategy, one has to demand whether we need a national clinical director at all, apart from needing to fulfil a rôle as keynote speaker on the conference circuit.

@dr_shibley

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