Tag Archives: social care

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The breaking point of dementia care. Time for fewer bandwagons and more real action.

How many times do we all need to say that the NHS and social care are at ‘breaking point’?

The King’s Fund confirmed today the broad sentiment of this year’s Care Quality Commission State of Care (CQC) report. There have been a few more social media bandwagons compared to last year, with a few more social movements aka marketing audiences. But the fundamentals are essentially unchanged, as we knew they would be.

Nigel Farage is not the only one with a ‘breaking point’. As it happens, his breaking point, now turned into Brexit, not only has an effect on the availability of Marmite, Surf and Ben and Jerry’s online from Tesco, but also has a bearing on whether the number of available workers in social care will implode on itself.

The sobering part of this morning’s CQC report was that all of this was going wrong ahead of the Brexit decision. There was nothing to stop years or decades of relative underinvestment in the NHS and social care apart from politics. The reason the NHS is suddenly ‘underfunded, underdoctored and overstretched‘ is not due to decades of Asian immigrant staff helping to prop up the system.

Prof Sube Banerjee makes a striking observation about what we might expect in the near future from certain innovations in dementia in his foreword to my book ‘Enhancing health and care in dementia: a person-centred integrated care approach’.

“In the provision of services for people with dementia we are at the stage of ‘a hundred flowers’ blooming with as many models of care as there are Clinical Commissioning Groups. While some of the flowers may be wonderful, some are likely to be frankly poisonous and we do not know which is which at the moment.”

It is comforting to put your faith in the future of dementia care from mythical figures on the side of a bus, or the myriad of hashtags on Twitter, but, unless Chris Hopson’s fundamental concern is addressed, we cannot move much further forward.

Chris Hopson is the fairly bubbly CEO of @NHSProviders who is not afraid to speak his mind politely.

Hopson was this week appearing in front of the Health Select Committee, sat to the right of the Rt Hon Stephen Dorrell MP one of the most accomplished and experienced Health Secretaries.

This is what Ed Miliband MP used to warn about as ‘overpromising and underdelivering’. Hopson mooted whether some of the sustainability and transformation plans would live up to quality expectations given their financial projections.

And Hopson mooted exactly what many of us feel.

At worst, there is a strange form of intense denial at the top echelons of Government. However, some decision will have to be taken at the time of the Autumn Statement by the current Chancellor of the Exchequer.

Sir David Nicholson famously remarked that making long term plans for the NHS tended to be scuppered by short-termism, echoed by Hopson more graphically earlier this week.

I don’t need to rehearse the ways in which the NHS and social care outcomes are consistently breached by pressure points in the NHS, including delayed transfers of care, crisis in mental health provision, funding inadequacy, A&E delays, and so on. These are well known.

But while the intense denial continues, this means a lack of adequate funding grand plans for an integrated care pathway for people with dementia and carers. Every where you look, despite some excellent care, there are massive problems, like the inequity in provision of adequate health services in care home, delays in organising care packages for older patients in hospital, chaotic care planning, inadequate sharing of health and care records.

The point is – these are not new problems. We don’t need to spend a year producing more infograms and hashtags, and more campaigns and more conferences, for the same ‘in crowd’ to do nothing about the burning problems.

For all the talk of collective or distributed leadership, and there is a lot of it, it is clear leadership is not up to scratch either in the NHS or social care. Paul Burstow MP famously likens social care to ‘Baywatch’, where a lot more effort could be put into teaching people how to swim, rather than having a coastguard hub with an unsafe number and mix of lifeguards.

For the care of dementia, there could be, for example, some financial assistance in allowing people to live at home with the correct assistive technology support, or even robots or pets, or even ‘hospital at home’. But because the system is so fracked we’re not anywhere near that level of debate.

It’s the repeated failure stupid.

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A renewed settlement for dementia is needed nationally, with integration in pole position

The fact that dementia care and support are so fragmented in the devolved administrations of the UK means that a cost saving in timely diagnosis in the health budget will not easily be apparent in national accounting of improved quality of life in the social care budget. In many ways, the dementias constitute a ‘final frontier’ as an issue in society. Anything can happen to anyone at any time, and is it inevitable that we must all die of something. That there are more of us living longer is a testament to various things, possibly not least particular lifestyle or ‘risk reduction’ decisions. More of us living longer will mean more of us developing dementia in all likelihood, as we know the risk of developing dementia increases with age. I heard a joke recently that the only part of a hospital you would find soon not populated with people with dementia would be the special care baby unit, but this is clearly to exaggerate the point.

 

The dementias, over a hundred of them, and of which Alzheimer’s disease (more correctly a syndrome) is the most common, are commonplace. You’re pretty likely, at the very least, to know someone who knows someone with dementia. The disclosure of a diagnosis of dementia can appear as if the ‘professional’ least wants to talk about it, but the ‘patient’ wants to find out as much as he or she can. Dementia is not just a condition of ‘old age’, however, and as a society we need to have a mature attitude for people say in their 40s who see their trajectory of friend and family life, and/or employment, disrupted. At one level, they are all conditions of the brain, and we mean them currently to mean chronic, progressive conditions which get worse. There are ‘symptomatic’ treatments, often very limited in time and scope (but not meaning they’re not “worth a try”). But a disclosure of diagnosis is never solely to one person – or at least should never be solely to one person. Nearest in close relationships are inevitably involved, and have hopes, worries and expectations about the future. To turn around the iceberg (erroneous) belief that all people with dementia are in ‘advanced stages’ has not been easy – and for people who have done this credit must be placed where credit is due.

 

As the classic Ian Dury song goes, there are indeed ‘reasons to be cheerful’. We know a lot more about the science of dementia. There’s a lot more of us living beyond “young” or “mid age”. It has recently had the political spotlight shone on it, but with this scrutiny must inevitably come responsibility. But, for some, the diagnosis can come as a ‘devestating shock’, in that society has conditioned us to fear dementia as more than other entities such as cancer, where there has been marked medical progress. But – piecemeal improvements with time will come for particular medicines, maybe for some with particular genetic or structural footprints, where we can chip away at an iceberg. It might well be the case that particular genomic specs will have a rôle to play here. To have framed it as a ‘cure by 2025’ might have been political expedient in providing a robust vision, but was always inherently flawed. There is a huge amount of research being done into research, and inevitably we all have to be mindful of not reinventing wheels. Much of this research, like government reports, has been done before. Replication is useful, but not when resources are scarce and there are significant opportunity costs.

 

Dementia, more so than many other medical conditions, is profoundly human. It has been necessary and proportionate to see the person beyond a mere diagnosis. Dementia never travels alone, and it’s not uncommonplace for a person with dementia to be living also with five or six other conditions such as lung disease or heart failure. This means that dementia, unlike many of the societal challenges facing us previously, is not simple. It made sense for governments to ‘solve’ other problems such as outbreaks of communicable disease or ‘easier problems’. But there are strong reasons why a national ‘strategy’ for dementia must be nevertheless rigorously pursued, with the previous strategy having expired after five years from 2009 (in 2014). This is even more so in the case of strong drivers for care and support after diagnosis potentially falling apart at a local level due to a plethora of factors, such as postcode lottery of service provision, or even personalised health and social care budgets. We need to renew our contract with the growing number of people with dementia in the UK, approaching now one million, and the solid huge army of carers paid and unpaid. Without unpaid family carers, the system following diagnosis would truly implode – and preserving their health and ability to cope is essential.

 

It is essential that with our improved knowledge of the specifics on dementia we are able to diagnose the type of dementia accurately, and have the skills to do this wherever. The distinctions between primary and secondary care are getting increasingly blurred, as we progress, albeit at snail’s pace, down the pathway of integration. Medical professions know not to give certain drugs in certain types of dementia, to avoid making things worse. But much more importantly – the attitude of ‘nothing can be done’ must be turned around; if a person has complex visuospatial problems following a dementia such as posterior cortical atrophy, the needs of that person must be attended to by occupational therapists, or if a person has complex linguistic problems following a dementia such as primary progressive aphasia that person must be attended to, for example, by a speech and language therapist. If a person is prone to eat sweet foods and drinks in progression of dementia, he or she should have a dietician’s input. If a person develops problems in movement or gait following a dementia, it makes sense for him or her to see a physiotherapist. This enablement narrative which is emerging puts to full use the skills base of the allied health professionals, and this expertise is much needed in the anticipation of care needs, or care planning, say for living life to the full and in ‘avoiding admissions’ to hospital care. Continuity is king.

 

But a national strategy in the UK, where people with dementia and carers get help in the right way, right place, right time, is a testament that we as a society wish to promote wellbeing as well as quality of care, from diagnosis to beyond death, wheresoever that is, at home, in hospital, in a care home, or in a hospice, for instance.  Dementia is not an area which respects traditional boundaries – e.g. young vs old, or health vs social care, requiring a true multidisciplinary boundary-less approach. The complexity of living with dementia means that it is no longer feasible for people to ‘blame’ people with dementia, calling people who are distressed due to a combination of pain and difficulties in communicating as ‘challenging’ – or people with dementia who talk round a subject as ‘confabulating’ – or people who are not engaged in environments promoting contentment as ‘agitated’ – or people who want to go for a walk but haven’t made up their mind as ‘wandering’. “Dementia friendly” care, in as much as the term is genuinely useful rather than a marketing gimmick, is much more than the décor and colour scheme of buildings, also puts personhood first, in other words not having a rapid turnover of staff, or having staff who are too burnt out to care. One cannot underestimate the huge power given to us from the life and teachings of Kitwood.

 

A national strategy for dementia is an endorsement of a long term planning commitment from society to valuing people who have contributed much to society. It is a signal to playing to their strengths. It is said that Ronald Reagan, even with advanced dementia, used to enjoy reminiscing about skills he used in employment in his 20s. But the fact that ‘dementia never travels alone’, and that comorbidity is a norm rather than an exception, means that the national infrastructure has to be fit for purpose, with both generalists and specialists in the workforce, building on the great work in ‘awareness’ from groundbreaking initatives such as ‘Dementia Friends’, electronic patient records, but also a shift in ethos, such as not dosing people up inappropriately in care homes with antipsychotic drugs, greater readiness for advance care planning, access to key components such as legal advice or appropriate housing, a willingness to engage with palliative approaches or end of life when the time comes. The infrastructure must accept also some unpalatable truths – such as we may not be able to provide for the complex needs of residents in care homes when other solutions might be more appropriate, such as community nursing or hospital at home. A more timely diagnosis will mean more people living knowing the diagnosis of dementia than before, and this means a greater responsibility for the signposting of knowledge and information beyond ‘silos’ to encourage wherever possible independent living. And this ethos – in keeping with the regulatory codes for the NHS and social care for example – must fulfil the essential safeguarding and safety obligations from professionals, making sure care is not delayed (say in getting out of hospital or getting into a residential home), health needs (both physical and mental) are not simply ignored irrespective of care setting. There inevitably needs to be a political, social, economic, legal, technological and financial/economic commitment for this renewed dementia strategy with integration centrepoint to reveal itself.

 

The narrative has though undoubtedly changed in other ways. The link between dementia and disability is much clearer in people’s minds, as are the fundamental human rights of people living with dementia (and reciprocal ones from carers) impacting on all aspects, diagnosis, care and support, formal and informal. With this greater definition it is hoped there will be accompanying a greater respect and dignity – and a stronger sense of solidarity, reciprocity and citizenship. No longer can research and service provision be ‘done to’ people with dementia and their closest, but rather the attitude should be ‘done with’.

 

One can only believe in choice and control if the system is not impoverished. We are lucky in the UK in not being a low income country, where different considerations of equity are inevitably involved. But nonetheless we should all be on our guard against inequality, the social determinants of health. Knowledge is power, but likewise ignorance is not bliss after all? We know the numbers of people living with dementia and caring are increasing. We know this could need more resources. We know there’s a benefit from timely diagnosis. We know there is an obligation for high quality of life and quality of care for all involved. We know the wider world has to have a sharp focus on inclusivity and accessibility, which goes beyond ‘friendliness’, but we’ve come a long way in attacking vile stigma and prejudice.

 

But above all – a renewed settlement for dementia is needed nationally, with integration in pole position.

 

 

 

 

Dr Shibley Rahman

London, August 2016

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Did the Prime Minister's Dementia Challenge park a 'National Care Service' for good?

I’m still unclear where and when the Prime Minister’s Dementia Challenge came about.

Airbrushed for challenge

The lack of a clear audit trail for the Prime Minister’s Dementia Challenge

I know that it was launched in March 2012.

“Dementia” is not mentioned in the Conservative Party Manifesto for the general election of 2010. It is however mentioned in the Coalition Agreement, with broadly the same wording as the Liberal Democrat manifesto 2010, but that still doesn’t explain how this became the “Prime Minister’s Challenge”.

In summary, the one line in the Coalition Agreement is drafted as follows:

“We will prioritise dementia research within the health research and development budget”

But still no specific mention of that “Challenge”.

The distortion effect of the Prime Minister’s Dementia Challenge

The Dementia Challenge prioritises the Alzheimer’s Society, and it is clear that other charities, such as Dementia UK (which is experiencing threats of its own to its superb ‘Admiral nurses’ scheme) trying to plough on regardless.

The £2.4 million “Dementia Friends” programme emerged from the Social Fund and the Department of Health. The scheme has been launched in England at first, and it is said that the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

Indeed, many supported the fundraising for Dementia UK only this morning in the London Marathon too.

Dementia UK London marathon

There is no official cross-party consensus on the “Prime Minister’s Dementia Challenge”, though individual Labour MPs support the activities of “Dementia Friends”.

The market dominance of the Alzheimer’s Society for ‘Dementia Friends’ compared to other charities does not seem to have been arrived at particularly democratically either. There is no conceivable reason why other big players, such as “Dementia UK” or the Joseph Rowntree Foundation, were excluded from this friendship initiative.

Ironically, Japan upon which befriending is modelled is not ashamed of its care service.

It is palpably unacceptable if people are ‘more aware of dementia’ without a concominant investment in specialist memory clinics, or care and support services.

Genuine concerns from stakeholders involved with dementia care

It is clear amongst my followers on Twitter that the nature of this “Challenge” is causing considerable unease.

Concidentally I was reminded of this this morning:

But there are now some very serious questions about this policy, particularly from the ‘zero sum gain’ effect it has had knock-on in other areas of dementia policy.

When @Ermintrude2 looked into this at the time, the response was a bit confused.

And indeed Ermintrude has penned some thoughts at the time on this high impact blog.

What has happened to social care in the name of ‘improvement’, I agree, is very alarming.

But we do know full-well about the ‘democratic deficit’.

False pledges and threats, and unfulfilled promises

The general public were unaware that a 493 Act of parliament called the ‘Health and Social Care Act’ would be sprung on them, with a £3 bn top-down reorganisation.

But this was Lansley’s “emergency conference” on Labour’s “secret death tax” in February 2010.

A number of views were expressed at the time, including the need for better care from the Alzheimer’s Society at the time under a different CEO.

The full thrust of ‘Dementia Friends’ is a total change of mood music from February 2010’s concerns of the Alzheimer’s Society reported here:

“Care and treatment for sufferers of dementia should be at the heart of the general election campaign, the Alzheimer’s Society charity has said.”

Where has the Society been in campaigning on swingeing cuts in social care?

Also, in February 2010, Gordon Brown’s speech at the King’s Fund was reported, where Brown made a significant pledge.

“Mr Brown also announced that the government’s planned reforms to community and primary care health services also included a commitment to provide dedicated “one-to-one”nursing for all cancer patients in their own homes, over the next five years.”

We do know that the NHS has been persevering with this programme with ‘efficiency savings’.

In October 2012, it was reported that nearly £3bn was indeed returned to the Treasury, and it is unclear how, if it at all, it was returned to front line care.

So it’s possible that Brown’s plan, the subject of a hate campaign at the time from the Tory press, might have worked in fact.

Dilnot

In 2010 Andrew Dilnot had been tasked by the then government to propose a solution to the crisis in social care.

The response was from February 2013, after the top-down reorganisation.

“Mr Dilnot suggested a cap on how much anyone would be required to pay for their care costs over the course of a lifetime, suggesting a ceiling of between £25,000 and £50,000 (in 2010/11 prices). Beyond this point, the state would take on responsibility for the majority of the bill.

The Government today announced that from 2017 it intends to establish a cap of £75,000 in 2017 prices which, according to Mr Dilnot’s calculations, equates to approximately £61,000 in the 2010/11 prices (the basis of his report). If we’re to make a claim about the extent to which the Government has ‘watered down’ Mr Dilnot’s proposal, it’s crucial that we account for this inflationary effect.”

Resurrection of the ‘National Care Service’ by Andy Burnham MP yesterday, Shadow Secretary of State for Health

This issue may have to be revisited at some stage. Andy Burnham MP yesterday in the Bermondsey Village Hall, without much press present, mooted the idea of how a social care service could be established on the founding principles of the NHS, and would be a significant departure from the piecemeal 15-minute slot carers.

Burnham stated that care provided by inexperienced staff on zero-hour contracts was a problem.

An experienced member of the audience highlighted the phenomenal work done by unpaid family caregivers particularly for dementia.

The topic of a compulsory state insurance is interesting.

Social health insurance systems share a number of similar features:

  • Insured persons pay a regular contribution to a health insurance fund based usually on income rather than reflecting their risk of illness.
  • Clinical need and not ability to pay determine access to treatments and health care.
  • Contributions to the social insurance fund are kept separate from other government mandated taxes and charges.

In his classic article, Kenneth Arrow (1963) argues that, where markets fail, other institutions may arise to mitigate the resulting problems: ‘the failure of the market to insure against uncertainties has created many social institutions in which the usual assumptions of the market are to some extent contradicted’ (p. 967).

Rationale for this method of funding

A great advantage of ‘social insurance’ is, because membership is generally compulsory, it is possible (though not essential) to break the link between premium and individual risk.

There might be other important aspects. For example, both employers and employees pay contributions. Also, there might be Government support for those who are unable to pay goes through the insurance fund.

I have written before on the increasingly sophisticated methods of genetic diagnosis of dementias, and how this might impact on our health systems.

The philosopher John Rawls (1972) argues that in a just society the rules are made by people who do not know where they will end up in that society, that is, behind what he called the “Veil of Ignorance”.

Insurance can be interpreted as an example of solidarity behind the Veil of Ignorance: a person who joins a risk pool does not know in advance whether or not he will suffer a loss and hence have to make a claim. Insurance thus has moral appeal.

Ultimately there is a problem as to what type of care might be covered.

Does the policy cover only residential care, or also domiciliary care; is a person entitled to residential care on the basis of general infirmity or only if he or she has clearly-defined, specific ailments?

In the Dilnot recommendations, the cap on care payments did not include the “hotel costs” that a care home will charge. In other words, people in residential care will still need to pay (at the Dilnot report’s estimate) between £7,000 and £10,000 per year to fund their accommodation and living expenses. 

Furthermore, how will the answers to these questions change with advances over the years with changes in the actual prevalence of dementia, or in the implementation of ever increasingly sophisticated medical technology?

It has been proposed (Lloyd 2008) that long-term care could be financed via social insurance, with the premium paid as a lump sum either at age 65 or out of a person’s estate. The idea behind this proposal is twofol.

Firstly, as a person gets older, the range of uncertainty about the probability of needing long-term care  becomes smaller.

Secondly, if a person can buy insurance for a single premium payable out of his or her estate, the cost of long-term care does not impinge on his or her living standard during working life or in retirement, but can frequently be taken from housing wealth.

Development of social health insurance systems have normally been in response to concerns that inadequate resources were mobilised to support access to health services.

The continuing swingeing cuts in social care

And these cuts have continued: this report is from March 12 2014,

An analysis by Mind found that the number of adults with mental health needs who received social care support has fallen by at least 30,000 since 2005, a drop of 21%. Cuts to local authority social care budgets – the majority of which have hit since 2009 – have left a funding shortfall for care of up to £260 million, the charity said.”

Since there is no simple answer to the question of how much is the appropriate level of support, the issue of adequacy is best thought of as being a level that is considered appropriate in the country given its total resources, preferences and other development priorities.

And where are people from charities campaigning on this issue?

This issue of course was not considered at all in the G8 Dementia Summit, which focused on more monies for personalised medicine, genetic and molecular biology research, in response to concerns from an “ailing industry”.

Conclusion

I am actually truly disgusted at this unholy mess.

 

 

 

References

Arrow, Kenneth F. (1963), ‘Uncertainty and the Welfare Economics of Medical Care’, American Economic Review, 53: 941–73; repr. in Cooper and Culyer (1973: 13–48), Diamond and Rothschild (1978: 348–75), and Barr (2001b: Vol. I, 275-307).

Lloyd, James (2008), Funding Long-term Care – The Building Blocks of Reform, London:

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I have not set out to build a social movement, but I want to do this for persons with early dementia

I received this message last night.

private message

The thing is, I don’t buy into the profoundly negative imagery of the media, including memes such as “crippling”, “horrific”, “timebomb” and “explosion”.

Whilst some people, and caregivers, are undeniably “suffering”, you can’t expect all people to agree with this particular narrative at all times, I feel.

One of the things I’ll never forget was when my Ph.D. supervisor, Prof John Hodges, received a complaint about me doing neurocognitive assessments in a person with frontal dementia back in 1997.

This type of dementia, commoner in an age group below 60, is characterised by a personality and behavioural change early on, often in the absence of deficits in thinking such as memory or perception. You need an account from someone very close to that person with dementia, as the person himself or herself can have no insight into the changes.

I remember saying to the wife of a young man with this type of dementia, “I would never have guessed that he had a dementia”. This comment had upset her very much, and by that stage I was years into my medical training.

This one event is something I’ve never forgotten in the 16 years subsequently.

I remember I literally didn’t sleep for a week, and I was profoundly upset by this. But it does lie to the heart of some of my reservations about the term ‘dementia friendly communities’. There are some people for whom you would not be able to tell they were living with dementia.

I understand the focus on memory problems in the general media, as this can be a dominant presentation in typical Alzheimer’s disease, the commonest form of dementia. But memory is only one of the cognitive functions we have.

What unites all people with dementia is that the law makes a verdict on whether they are able to make decisions. This is called legal capacity.

Decisions impact on many aspects of life, such as working out how to spend your money, or which treatment to go for in hospital.

And capacity is very topical. Not only is the House of Lords seeking to update the Mental Capacity Act (2005), but also neuroscientists currently want to know what members of the public think about their research on decisions.

This is therefore not about denying compassion or dignity for all persons with dementia. It’s about redressing a power balance, where I feel people who’ve just received a diagnosis of dementia might learn something constructive about dementia, decisions and science of how to influence decisions.

This is profoundly about having a discussion with persons with dementia.

I’ve been on the receiving end of ‘look at my website’ and I find it intensely nauseating. But I wish my website, which I intend to build with funds from a crowdfunding campaign and scientific grant bodies, to allow persons with dementia to think about their own decisions.

It’s well known in the science of decisions for example that some ‘bad’ decisions can be avoided by not following ‘hot impulses’ or following the ‘herd effect’.

So here is my explanatory video:

Whilst I have been urged to make this campaign so that ‘it touches every person with dementia’, I do also want a grown up conversation without dumbing down any of the concepts.

A lot of feedback has concentrated on the ‘social movement’ aspect of it, but I should like to say whilst I say I would like to build one, I really mean it’s important for me personally that this gathers some momentum.

And I think it will from initial feedback from persons with dementia, and even people involved in the NHS and social care.

All too easily dementia policy can have more regard to marketing and tokenism, which lends itself to commissioning ‘tick box’ culture. My campaign is not for them.

And I’ve got a bit of a shock for some people – I am determined to make a big success of it.

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