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A wellbeing economics prism to ‘dementia friendly communities’
There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.
There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.
There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.
Another consensus is to be found in wellbeing, or living well.
I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):
“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”
Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.
This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.
One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.
I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.
As the O’Donnell Report puts it, wellbeing:
‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.
There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.
But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.
The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.
In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.
Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.
These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.
Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.
It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.
I feel that this touches upon another tension of dementia policy, this time at a global level.
We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.
Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.
There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.
But this I genuinely think would be to analyse the issue too much but with one important proviso.
That proviso is that I don’t think you can value people simply in terms of their economic productivity.
I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.
In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.
This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.
But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!”
Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).
There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.
The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.
But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.
The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.
If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.
Other jurisdictions might even follow suit.
Recommended reading:
Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2
Wellbeing in four policy areas: Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf
All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447
Continuity of care and support is vital in dementia policy. We are a long way from that.
In a way, the second ever English dementia policy poses more of an acid test than the first one. The reason for this is because we already have a set of yardsticks by which the first five years can be assessed, with a view to projecting forewards.
I don’t doubt the enthusiasm with which we have tried to close the ‘diagnosis gap’ in England. The heart of this is the high quality diagnosis, as stipulated in the original policy co-authored by Prof Sube Banerjee at Brighton and Sussex Medical School. What we have tended towards, rather, is a culture of high volume mediocre quality. And people readily admit they would rather wait that little bit longer to get the correct diagnosis.
I do not subscribe to the idea that anyone can easily make a diagnosis of dementia. When a diagnosis of dementia is finally given, it’s given not just to the person with dementia, but to his or her friends, or her family. As Kate Swaffer says, she is not a person with dementia primarily; she is a person with friends, family and feelings.
This approach prioritising the person has to be right from the word go. We are all persons, but we become patients when we become ill enough to present to the health and care services or not. We become paying consumers when we part with money. We are consumers if we spend any resources from the pot of money paid into from national insurance.
And so on. This analysis of money is a sideshow only as far as to how to service is delivered is actually matters. If you have services in dementia and support commissioned in a highly piecemeal manner, at worst from clinical commissioning groups who don’t know what wellbeing is, nor what they’re looking for, it can be a mess.
The hunt is definitely on for effective commissioning as well as any commissioning at all. The next Government will have to provide much better clarity on this, and some objective guidelines on how, say, the delivery of wellbeing might be ensured on an ongoing basis, not just at the start and finish of a commissioning contract.
But it is the fragmented approach from different providers which is a threat. Low pay of carers, not meeting the national minimum wage, or zero hour contracts, is a problem, and the reason specifically why private providers can be an issue here is that large corporates with scrupulous employment practices can hide behind a veil of being unperturbed from freedom of information legislation.
It is very easy to argue that entire health policy, and even dementia policy, is not political. I don’t believe this is justifiable for a minute. How we prioritise care at all is a reflection of our collective solidarity as a society, and our success in ‘pooling risk’. If I know for example I have a high genetic risk of developing a dementia from my genetic make up, my insurance premiums is likely to go through the roof unless there is tight anti-genetic discrimination law in place in England (which there isn’t).
Having a piecemeal system promotes lack of continuity of care. I think this is fatal for any new English dementia strategy. I think this piecemeal system, whether an artefact of private markets or not, or political ideology, can adversely affect people living with dementia and carers in a number of different ways.
First of all, the caregiver relationship, whether paid or unpaid as carer, fundamentally depends on that caregiver knowing the person with dementia. The happiest relatives I have ever spoken to are the ones who report that they haven’t had a regular changing of the guard as regard carers. This is important for building meaningful relationships with time, as people with Alzheimer’s disease for much of their time, even if they have weak memories for events have strong enduring memories for emotions. Besides, change here can be very distressing, and mental distress can impact on lack of physical wellbeing (although ill being is not necessarily the same as lack of wellbeing).
Secondly, continuity of care by a physician or an appropriate specialist in clinical psychology acts as a safeguard to check the actual diagnosis is right. Some initial cognitive impairments do not progress – they remain mild. A ‘wrong diagnosis’ of dementia does not necessarily mean someone has goofed up as such – it could mean that something that was predicted to progress didn’t. The drive to diagnosing dementia, particularly with financial incentives, could mean we accidentally mislabel mild cognitive impairment as dementia, and this is clearly a tragedy for all involved.
Therefore, a diagnosis disclosure can never be a single hit and run event. There needs to be follow up from the system, whether it’s by the same GP, a hospital physician or psychiatrist, a different member of the memory clinic possibly somewhere totally different; a second ‘set of eyes’ to see whether the initial diagnosis is correct. Granted I agree that knowing what the diagnosis is can be the key to opening services, being armed with information and hence empowered, and all the usual arguments, but the diagnosis must be correct. There is no alternative on this.
Say, for example, you are in fact depressed, not living with dementia, and a clinician in a hurry informs you you are living with dementia. You have presented in response to the question, “Do you have problems with your memory?”. Such a misdiagnosis is likely to make you even more depressed; and not receiving effective treatment for depression, whether as a psychological therapy or medication, or otherwise.
Thirdly, somebody who knows a person well will be able to spot when a person with dementia changes in any way. This could be a ‘difference’, such as the development of a sweet tooth, a ‘deterioriation’ such as in memory, or even an ‘enhancement’ as in acquisition of a love of music, or artistic and creative talents. You can only ascertain this with time. This is where the idea of the review has to change fundamentally.
I don’t feel this review should take place in the hands of medics who repeat scans and tests, ask a few random questions, and document the decline (as dementia is progressive if it is not ‘reversible’ such as vitamin deficiency). Implementation of a ‘year of care’ for dementia, or a national network of clinical specialist nurses, will be able to manage a caseload of individuals living well in a pro-active fashion, each with an individualised care plan; where the goal is to live well, not to firefight in a crisis.
Fourthly, the fundamental crunch time for a person living with dementia is an inability to retain information for a decision, an inability to make that decision, and an inability to communicate that decision. The starting point is that we can make decisions or have ‘capacity’. This capacity can come or go; and it’s dangerous if we get into the mindset that capacity is all or nothing, but that is the legal shortcut we have in place.
But this capacity needs review on a regular basis, as it fundamentally changes our view as to whether a person can consent or not. People living with diffuse lewy body dementia, for example, can notice themselves one day they’re performing quite well, other days not so well. If we don’t get into the good practice of reviewing capacity and consent on a regular basis, through continuity of care, we will easily arrive at a situation where people are languishing inappropriately on medications. It’s generally felt that, while appropriate for some, antipsychotics prescribing is too high, often inappropriately; some side effects such as drooling of the mouth can be very distressing. It’s currently, rightly, a plank of policy to address the inappropriate prescription of antipsychotics particularly in care homes.
In summary, the ideal would be somebody to accompany a person from the point of diagnosis to the time of end of life; not chopping and changing. I was told by a senior specialist nurse at the National Hospital for Neurology and Neurosurgery, Katy Judd, that one of the most disturbing phenomena for persons with dementia and families is when their ‘contacts’ have ‘moved on’ on such a frequent basis. There clearly needs to be proper signposting with the system, known as care coordinators, but we need to avoid the situation where there is an abundance of signposts and a dearth of frontline care.
But I feel fundamentally continuity of care and support is critical. Having the same mutual followers on a social network on Twitter has the potential to improve wellbeing, and having somebody there by you that you trust is likely to have the same effect. People living with dementia who are stimulated psychologically by positive experiences are likely to find their experience fundamentally of a different nature to those who don’t.
For these reasons I feel that, whatever tactics are used, and whichever government is in office and/or power in England, for the next few years, an overall strategy of prioritising the continuity of care is pivotal.
The spirit of 2015
In the Peasants’ Revolt in 1381, John Ball said, “Nothing will go well in England until all things shall be held in common”.
I went to Trafalgar Square, just downstream from Piccadilly, in London for a huge NHS rally earlier this year. It’s where crowds had also gathered in 1945, for VE day to celebrate winning the Second World War.
As we face a general election on May 7th 2015, something akin to the ‘spirit of ’45” arguably needs to be mobilised. It is sometimes easy to escape seeing the wood from the trees, with discussions firmly footed in the immediate, such as a leaked memo by Labour on immigration, or a brouhaha between Russell Brand and Nigel Farage.
We still need the same type of military discipline to build a Britain fit for purpose for peacetime. Successive mainstream governments have allowed themselves to sing to the neoliberal tune. It’s clear that in some places this hand has been overplayed, such as the ‘benefits’ of competition to the NHS. Because of the ‘market’ in the NHS for the first time under this Government, a hospital merger reasoned on the basis of clinical need could not take place because of competition law.
We’ve been sucked into this false narrative, and we are still not free of it. But if we return to a collective spirit anything is possible.
Whilst both Margaret Thatcher and Winston Churchill clearly wanted the words of FA Hayek (“The Road to Serfdom”) to be widely read, it is a sad admission that the market is not in fact liberalising; it can be best described as positively “enslaving”.
Markets free from public ownership are dogged with waste and inefficiency. Water and gas are homogenous products; they form natural monopolies which need to be organised properly.
In 1947, the UK parliament set up the British Transport Commission. One of the first steps was to abolish in Euston around the time, the ‘clearing house‘ of hundreds of clerk to oversee the administration of transactions between private companies.
Move forward to the time of this Government, some private outsourcing companies have also been dogged further with illegal fraud allegations. They also escape the Freedom of Information Act.
Very few of us want a NHS where your access is treatment is dependent upon your ability to pay. But only today it was reported that acute dermatology services would be taken out of scope in Nottingham and Lincoln for example.
It remains the case that Governments should respond to people’s needs, and have people with a strong public service interest to organise facilities around these needs. The primary driver cannot be profit, especially excessive profit. The section 75 clause of the Health and Social Care Act ram raided the NHS with competitive market tendering. The result has been some mouth watering contracts go to the private sector; this is privatisation, meeting the WHO’s own definition of the transfer of resources.
We want a world where the world is adapted for needs, and democratic.
It’s not a question of buying influence with money. The most effective route to exerting influence is the careful use of the democratic vote. A vote on Farage is likely to be an opportunity missed, when you could vote for the full integration of health and care services or ‘whole person care’.
We should NOT fight with each other.
Nurses should not struggle on and on, many without pay rises, creating value in the NHS, while private equity cream off proceeds from the wealth that they create through a series of abstract transactions.
Nurses and all workers including allied health professionals and doctors OWN the National Health Service – the City shouldn’t.
The Beveridge Report spurred us on as a country to combat five giant evils.
As described in an article in the Guardian earlier this year,
“Beveridge, however, was on to something in basing his report on the need to tackle five “giant evils”: want, disease, ignorance, squalor and idleness. His list has stood the test of time so well that when the IPPR thinktank published recently its Condition of Britain analysis, it revisited the five topics for an update. Verdict: work still in progress.”
“Want” is still a problem with many people needing to ‘top up’ their income with working tax credits. It doesn’t matter if we have a record number of people in employment, if these people are underemployed. They are working, but they are still poor. A spirit of 2015 needs to address abuses of zero hour contracts. Too many paid carers are providing care in fifteen minute slots, not being paid a proper wage, and not being paid adequately as power towards scrupulous employers has again swung too far.
Idleness is not a criticism easily levelled at men and women who are working extremely hard, and finding it hard to make ends meet with a rampant cost of living crisis. We want resources to be distributed properly, so no longer fat cats are sitting on huge salaries while there’s misery.
What has happened over welfare benefits, with an army of disabled citizens burnt out with worry, is a public disgrace. The UK should be proud of its value where we all pool risks and we all feel responsible for everyone else: we are our brothers’ keepers. As a civilised country, we should be ashamed if we don’t care for disabled or elderly members of our society, for example.
If resources could be organised properly in the Second World War, our resources can be organised properly now. Why has inequality got considerably worse under Thatcher’s government and beyond?
Things are so bad that members of the general public have utter ignorance about their legal rights being demolished. 2012 saw the Legal Aid and Sentencing and Punishment of Offenders Act and annihilation of English law centres. Furthermore, Chris Grayling who has never done a law degree so can be reasonably expected to be ignorant about aspects of the law has presided over demolition of judicial review and privatisation of probation.
The Commonwealth Fund found recently that the UK has one of the best health systems in the world. Put simply, the NHS won’t be able to survive another unexpected top down NHS reorganisation from the Conservatives designed to privatise the NHS yet further. We have 800 000 people living with dementia, and yet we have social care on its knees. Despite the high profile ‘Prime Minister’s Dementia Challenge’ and G8 dementia, one can rightly moot whether Pharma has benefited more than people living with dementia or caregivers.
No party wishes to doubt the prestige of the National Health Service, even though the Conservatives and Liberal Democrats produced the legislation in 2012 to turboboost its destruction.
Whereas Nye Bevan joked at the time of the creation of the NHS, ‘doctors’ mouths were stuffed with silver’, almost seventy years later corporate competition lawyers’ mouths were stuffed with silver.
Squalor does exist still. It is tempting to want to believe squalor doesn’t exist. But it does (as shown here).
As Tony Benn warned numerous times, politicians go round and round in circles.
Winston Churchill wanted after 1945 for the Conservatives to lead the UK to prosperity.
Winston Churchill wanted in 1945 to be given “the tools to finish the job”.
The Daily Express on the morning of the general election in 1945 urged voters to return Mr Churchill.
Clem Attlee for Labour, on the other hand, won with a landslide.
In 2014, David Cameron has asked for a mandate to lead the UK to prosperity and to ‘finish the job’.
You know what to do.
Am I in a better place than I was last year? Yes. Definitely.
When I finally got a chance to meet the General Medical Council this year, the Chairman of the Fitness to Practise panel asked one of the witnesses, a Professor, whether I was in a better place compared to a few years ago.
That witness said, “Well, I wouldn’t say necessarily ‘better’. He is successfully living with a disability, but he has been in recovery for seven years now.”
And so it went on.
The GMC asked me what my favourite areas of law are.
I explained curtly, “Whistleblowing”.
“Are there any areas of corporate law which interest you?”
“Yes – compromise agreements”.
I think the GMC smelt a rat at that stage.
“And your MBA? What did you enjoy the most?”
“Leadership”
“Why?”
“Because I don’t think the NHS has any effective leaders.”
And so it went on.
The purpose of this blogpost is to thank the people who’ve made my year.
I should like to thank my witnesses for my GMC hearing for helping me to return to the UK medical register. I consider it a massive honour to be a practising Doctor on that Register.
Being chucked off it ripped me apart. Going back to it was the most unbelievable happy event of my life.
I should like to thank Jos – though I have no photos of us. Jos Bell is simply smashing for keeping me going – for being interested – for not accepting any crap.
I should like to thank Kate Swaffer. I regret that the only time I met her, I didn’t know her at all. I chat with her on Facebook when I can, very frequently. My life would be utterly devoid without her.
Chris and Jayne also made my year. I feel as if I’ve known them ages. And Monica.
And it’s been a delight I’ve met in my world of dementia policy.
You see, I haven’t had a job since 2005. There’s an important reason for that. Dementia policy for me is not a hobby or a job – it is a passion. I don’t get paid for any of it, apart from very basic royalties.
I funded myself to go to Alzheimer’s Europe in Glasgow, and Alzheimer’s Association in Copenhagen – though I had a wonderful time.
Toby Williamson really ‘got it’. I can’t thank him enough for ‘getting’ the importance of the disability lens to dementia policy, as well as with a mutual friend of ours Grainne in Ireland.
It was truly wonderful to chat with Prof Martin Rossor who used to be my boss at Queen Square more than a decade on the dementia and cognitive disorders firm at the National Hospital at Queen Square.
Possibly the kindest man I’ve ever met (apart from my late father.)
I’ll be going to Perth and Adelaide next year – hopefully will catch up with Tru, Kate, Chris, Jayne, Pete and Boris.
I loved meeting Charmaine and the whole Hardy clan – and Tony and the Ostrich in Robertsbridge of course!
Thanks to Martin from the Socialist Health Association for keeping me going during my numerous visits to Manchester.
Thanks to Dr Phil Hammond whose article on alcoholism and the medical profession was the best thing to have happened to me for years.
Dementia is not a brand.
But here are some random memories.
Have met some remarkable people for the very first time – like Tommy Whitelaw and Sam – both feisty Scots!
Good luck Andy Burnham next year! I will be intensely proud when you get a chance to bring together the NHS and social care, and to begin to make whole person care a reality for me and many people living with dementia (and the caregiver community.)
Living better with dementia: a “Year of Care” for dementia?
This is an extract from my book ‘Living better with dementia’ by me (Forewords by Prof Alistair Burns, Kate Swaffer, Chris Mason and Dr Peter Gordon), to be published by Jessica Kinglsey Publishers 2015. It comes from the chapter on whole person care (chapter 10).
Acute medicine is ideally suited to the medical model where you make a diagnosis on the basis of investigations, and then you immediately implement a management plan. There should of course be prompt action on acute situations for people living with dementia, but this is rather different to the usual needs of a person trying to live better with dementia. A person with a long term condition “lives with the condition day by day for their whole life and it is the things they do or don’t do that will make the difference to their quality of life and the long term outcomes they will experience” (Royal College of General Practitioners, 2011).
Shirley Ayres (2014) argues in her article entitled “The long term care revolution: a provocation paper” that “people in later life offer wisdom, experience, perspective and a wide range of skill sets and capacities”, reflecting that that long term institutional care is not the correct setting for them. This argument also holds true, perhaps, for people living well with advanced dementia.
The burning question still remains, as it was in the genesis of the first English dementia strategy, how a framework of post-diagnostic support for people living with dementia could best take place in England. I have already discussed earlier in chapter 10 of my book the policy of ‘whole person care’, and the critical rôle of social care practitioners and clinical nursing specialists in a multidisciplinary approach. It is also worth noting that the “year of care” initiative has seen some crystallisation of the approach for living well. It offers a framework that supports delivery of the Domain 2 of the NHS Outcomes Framework ‘Enhancing quality of life for people with long-term conditions’. Through this, it is hoped that ‘far more people will have developed the knowledge, skills and confidence to manage their own health’, but there are clear implications for the implementation of whole person care, namely, “care which feels more joined-up to the users of services”, and “care [which] centres on the person as a whole, rather than on specific conditions” (Year of Care website, accessed December 2014).
There will always be the criticism that self management, rather than having the prime goal of encouraging health and wellbeing, is meant as a ‘cover’ for essential services being cut. Benefits of “self management” which have previously been proposed are, nonetheless, proposed in Box 1.
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Box 1. Benefits of ‘self management’ [Source: Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions]
When people self care and are supported to do this, they are more likely to:
- experience better health and well-being
- reduce the perceived severity of their symptoms, including pain
- improve medicines compliance
- prevent the need for emergency health and social services
- prevent unnecessary hospital admissions
- have better planned and co-ordinated care
- remain in their own home
- have greater confidence and a sense of control
- have better mental health and less depression
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Indeed, this policy agenda has been slowly ‘cooking’ for about year. For example, nearly a decade ago, Department of Health (2005) issued its document “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives” had proposed a number of key priority areas, namely:
- To embed into local health and social care communities an effective, systematic approach to the care and management of patients with a long term condition.
- To reduce the reliance on secondary care services and increase the provision of care in a primary, community or home environment.
- Patients with long term conditions need high-quality care personalised to meet their individual requirements.
This follows on from an elegant analysis from one of Derek Wanless’ numerous reports, this time “Securing our Future Health: Taking a Long-Term View” from 2002. This one envisages one scenario for the future involving full public engagement.
Wanless (2002) describes this as,
“levels of public engagement in relation to their health are high. Life expectancy increases go beyond current forecasts, health status improves dramatically and people are confident in the health system and demand high quality care. The health service is responsive with high rates of technology uptake, particularly in relation to disease prevention. Use of resources is more efficient.”
(Derek Wanless, Public Enquiry Unit (2002))
It has become increasingly acknowledged that under this approach, the “care plan” is pivotal. The care plan “should set out the patient’s agreed health objectives and care needs, including what the individual can contribute towards their own self care, and what each professional and agency will do to help them meet these. It will include preventive and health promotion actions (such as avoiding accidents, reducing infection or nutrition).” (Department of Health, 2005).
In a pamphlet from the King’s Fund (2013), entitled “Delivering better services for people with long-term conditions”, the authors, Angela Coulter, Sue Roberts and Anna Dixon describe a co-ordinated service delivery model – the ‘house of care’ – that incorporates learning from a number of sites in England that have been working to achieve these goals.
They describe that the “house of care” model differs from others in two important ways:
- it encompasses all people with long-term conditions, not just those with a single disease or in high-risk groups;
- and it assumes an active role for patients, with collaborative personalised care planning at its heart.
This model is a system innovation, as applied to dementia, as it proposes a shift in power from professionals to persons living with dementia play an active part in determining their own care and support needs. Such an approach, it is hoped, would respect autonomy dignity, promote independence and offer maximum choice and control for need help from the health and care systems. The philosophy of “whole person care” moves the NHS towards an integrated health and care system, which is concerned about individuals during health as well as disease, a critical time when the coordination between the NHS and social care could not possibly be worse.
Self care is about individuals, families and communities taking responsibility for their own health and wellbeing. It includes actions people take in order to stay fit and maintain good physical and mental health, meet their social and psychological needs, prevent illness or accidents and care more effectively for minor ailments and long term conditions.
Both dementia and diabetes mellitus can be viewed as disabilities, and each may be a co-morbidity of the other. Sinclair and colleagues (2014) have outlined the key steps in an integrated care pathway for both elements of this clinical relationship, produced guidance on identifying each condition, dealt with the potentially risky issue of hypoglycaemia, and have outlined important competencies required of healthcare workers in both medical/diabetes and mental health settings to enhance clinical care. In the overall construct, people living with a long term condition, disability or a minor illness, as well as carers, can benefit enormously from being supported to self care.
The ‘Common Core Principles to Support Self Care’ aim to help health and social care services give people control over, and responsibility for, their own health and well-being, working in partnership with health and social care professionals (Skills for Care/Skills for Health, 2007) Seven principles have been elaborated. These are shown in Box 2 below.
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Box 2. Seven principles to support ‘self care’ [Source: Skills for Care/Skills for Health (2007)“Common core principles to support self care: a guide to support implementation” http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf]
- Ensure individuals are able to make informed choices to manage their self care needs
- Communicate effectively to enable individuals to assess their needs, and develop and gain confidence to self care
- Support and enable individuals to access appropriate information to manage their self care needs
- Support and enable individuals to develop skills in self care
- Support and enable individuals to use technology to support self care
- Advise individuals how to access support networks and participate in the planning, development and evaluation of services
- Support and enable risk management and risk taking to maximise independence and choice.
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The “NICE quality standard for supporting people to live well with dementia: information for the public” is intended to support people to live well with dementia. It sets out how high-quality social care services should be organised and what high-quality social care should include, so that the best support can be offered to people with dementia using social care services in England (NICE, 2013). This has provided a very useful yardstick against which services which purport to improve the quality of life of people with dementia can be judged.
It is, further, reported that the ‘Year of Care’ (YOC) programme was successful in implementing the key features of care planning in diabetes, for example. The YOC Programme has two components, according to ‘Diabetes UK’ (2011). Firstly, it enhances the routine biomedical surveillance and ‘QOF review’ with a collaborative consultation, based on shared decision making and self management support, via care planning; and then it ensures there is a choice of local services people need to support the actions they want to take to improve their health, wellbeing and health outcomes.
People are involved in the care of their diabetes in quite a new way and enjoying it. People are setting personal goals and action plans relevant to their everyday life; take up of education programmes has improved and in very disadvantaged populations, poor attendance rates, biomedical outcomes and service use are also improving.
(Royal College of General Practitioners, 2011)
It is likely that the health and care sectors will seek to engineer the ‘best’ solutions on offer for post diagnostic support, within a framework of ‘whole person care’.
Such solutions might include ‘dementia advisers’, ‘clinical nursing specialists’, or ‘a year of care’. The solutions most appropriate for “living better with dementia” might be drawn, for example, from best practice in other long term conditions, such as diabetes or cancer. The quality of local commissioning, undoubtedly, is going to be pivotal in this. It will be a sensitive policy balance to make the argument that responsibilities of the State are not shunted across to the third sector in an unaccountable or unorthodox manner. But many will argue that there is valid and crucial role for the third sector to play. Actually, the policy imperative for this could not be clearer – many persons living well with dementia report not expecting to see a professional until the end of life phase, having seen one for the initial diagnosis. This is clearly not on if policy truly wishes to promote living better with dementia in England.
References
Department of Health (2005) “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives”, accessed 6 December 2014,available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4965951
Diabetes (UK) “Year of Care: Report of findings from the pilot programme” (date June 2011), accessed 6 December 2014,available at: http://www.diabetes.org.uk/upload/Professionals/Year%20of%20Care/YOC_Report.pdf
Innovate UK (2014) The long term care revolution: a provocation paper. (author Shirley Ayres), accessed 6 December 2014,available at: https://connect.innovateuk.org/documents/15494238/0/LTCRprovocationPaper.pdf/45cf1947-c477-4f21-913e-4eb3f9061aa0
King’s Fund (2013) (authors: Angela Coulter, Sue Roberts and Anna Dixon, October 13) “Delivering better services for people with long-term conditions”, accessed 6 December 2014,available at: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/delivering-better-services-for-people-with-long-term-conditions.pdf
NICE quality standard 30 April 2013 NICE quality standard for supporting people to live well with dementia: information for the public, accessed 6 December 2014,available at: https://www.nice.org.uk/guidance/qs30
“Policy: A Year of Care”, accessed 6 December 2014,available at: http://www.yearofcare.co.uk/policy-0
Public Enquiry Unit (2002) “Securing our Future Health: Taking a Long-Term View. Final Report” (author Derek Wanless), accessed 6 December 2014, available at: http://si.easp.es/derechosciudadania/wp-content/uploads/2009/10/4.Informe-Wanless.pdf
Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions, accessed 6 December 2014, available at: http://www.impressresp.com/index.php?option=com_docman&task=doc_view&gid=75&Itemid=70
Sinclair AJ, Hillson R, Bayer AJ; National Expert Working Group. Diabetes and dementia in older people: a Best Clinical Practice Statement by a multidisciplinary National Expert Working Group. Diabet Med. 2014 Sep;31(9):1024-31. doi: 10.1111/dme.12467.
Skills for Care/Skills for Health (2007) “Common core principles to support self care: a guide to support implementation”, accessed 6 December 2014,available at: http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf
The presentation may be awful, but sharing of information can be very useful for clinical decision making
Whenever I hear of somebody refer to ‘Big Data’ and the NHS, it’s an immediate ‘facepalm’.
When I saw a blogpost shared by a Twitter pal shared yesterday, a blogpost written by Sir Jeremy Heywood, my first instinct was completely to ignore it.
I am, though, mindful of the Civil Service’s prolonged campaign to measure wellbeing; this first came across my RADAR from Lord O’Donnell.
I have a disclaimer to make: I am not a corporate shill.
Having done certain training, I am aware of the hard sell of ‘Big Data’ as the next big thing by the multi-national corporates. “Big data” seem to have been given a somewhat pedestal status, like 3-D printers.
We are often told how intelligent technology rather than being a costly burden to the NHS could bring great benefits and outcomes for the NHS.
Undoubtedly, a lot of democratic deficit damage was done by the Health and Social Care Act (2012). At close to 500 pages, it was very easy to say it was too incomprehensible to be analysed. I always felt the Act, for anyone trained in commercial and corporate law, was in fact relatively straightforward.
The Health and Social Care Act (2012), often called “the Lansley Act”, has three essential prongs of attack: one to introduce a competitive market through legislation for a heavy penalty for non-one-commissioning not going out to tender, a beefed up regulator for the market (Monitor), and some detail about insolvency regimens (but not all).
In this, it was completely consistent with work by Carol Propper; and other noises from ‘independent think tanks’, such as the King’s Fund.
However, the acceleration of this Act through parliament by two parties which are extremely sympathetic to the free movement of multinational capital has done long-lasting damage.
I think there are problems with having data so transparent. When I did my Masters of Law practice-focused dissertation in cloud computing law, I unearthed a huge literature on data security and data confidentiality/sharing.
When I later did my pre-solicitor training, I discovered the regulatory requirements on the balance between confidentiality and disclosure to be complicated.
When I later came to revise ‘Duties of a Doctor’ (2013), the General Medical Council’s code of conduct, I found there to be equally onerous considerations.
I am aware of the problems in my own field of work; about concerns that NHS patients will be scared from going to see their GP for fear of being diagnosed, incorrectly, with ‘incipient dementia’ because of a GP’s practice wanting to meet a financial target.
Or a junior Doctor not wishing to share his alcoholism with his own Doctor, for fear that this information will end up with the clinical regulator, with a super-un-sympathetic sanction. This is a subject close to my heart, as you will well know.
Indeed, if you’ve been following me on Twitter, you’ll know that a year after erasure by the GMC (in 2006 to be endorsed by the High Court in 2007), I spent a year sitting in a pub with no family or job. I later was then admitted to the Royal Free Hospital having had a cardiac arrest and epileptic seizure, then to spend six weeks in a coma.
I am now knowledgeable about what both the legal and medical regulators expect me to do, as I am regulated by them.
The next Government will be wishing to implement ‘whole person care’. While I think some of Jeremy Heywood’s claims are a tad hyperbolic (for example saying unleashing data will lead to wellbeing improvements), and while I don’t feel he currently ‘owns’ the data (the data are confidential property of the people who provide the data), there are clinically-driven merits to information sharing.
From now on, I will avoid the word ‘data’ and use the word ‘information’. But ‘information’ does not necessarily mean ‘knowledge'; and it certainly doesn’t necessarily mean ‘wisdom’.
One scenario is somebody prescribed Viagra for erectile dysfunction in the morning. He then has sex with his partner in early evening, and has Angina. He has longstanding ischaemic heart disease, and then takes his GTN spray. His blood pressure then goes through the floor, and he collapses. He then is blue lighted into his local emergency room.
Do not take this anecdote as ‘medical advice’ or any such like where I could get into regulatory trouble please.
Viagra is a class of drug which can interact with the GTN spray to send blood pressure through the floor. If this information were known to an admitting Doctor in the emergency room, this would be useful.
I can come up with countless examples.
A lady from a care home turns up in hospital at 4am. An admitting Doctor wishes to prescribe a heavy-duty blood pressure lowering drug, but notes she has had a series of falls. This is found out by looking at her electronic medical record. She indeed has a history of osteoporosis; weak bones could mean that she might fracture a bone if she had another fall.
But I could come up with countless examples. And I won’t.
I am not a corporate shill. I understand completely the concerns about the loopholes in current legislation meaning that ‘big data’ could go walkies to drug companies, though this is vehemently denied.
I am also aware of ‘cloud failures’ – the Playstation one for some reason springs to my mind.
That’s another reason to keep an eye on ‘My NHS’.
But we do need, I feel, to take a deep breath and to discuss this calmly.
Labour needs to keep scrutinising PFI and the NHS
Nigel Farage’s supporters often say that at least UKIP is forcing the main political parties onto the ‘immigration agenda’, despite the main parties not wishing to discuss immigration.
Critics have argued that UKIP have discussed moving the NHS towards a private insurance system, whereas Nigel Farage, leader of UKIP, on Question Time, argued that the matter had indeed been discussed but later rejected by their party.
It is reported that the Labour Party wishes to make the NHS its ‘number 1 electoral priority’, and that Lynton Crosby, the current strategist and tactician for the Conservative Party, is desperate not to make it so.
Labour themselves have criticised heavily how PFI represented poor value for the NHS, while most people generally concede that the NHS has suffered from lack of capital for its various necessary infrastructure projects.
“Take the PFI contracts – the private finance initiatives”, Farage mentioned on Question Time in a lengthy answer on the NHS.
Through PFI, large debts have been stored up for future taxpayers – at some stage need to be repaid. PFI debts do not form part of the deficit balance sheet.
“New hospitals were built, but rather than going to borrow money rather than going to the gilts market in that horrible City place, where they’re all crooks, Labour went to really rich people in private equity – and we borrowed £50 billion sterling to build new hospitals, which we built, but the repayments are £300 billion sterling.”
PFI deals were invented in 1992 by the Conservative government led by Sir John Major, but became widespread under Labour after 1997.
The schemes usually involved large scale buildings such as new schools and hospitals, or infrastructure projects which would previously have been publicly funded by the Treasury.
The projects are put out to tender with bids invited from building firms and developers who put in the investment, build new schools, hospitals or other schemes and then lease them back.
Love them or loathe them, the people in the City understand finance.
I suspect Nigel Farage does too.
Debt finance is a loan – an “IOU” – where you pay back the money, together with debt interest payments.
Equity finance is the bread-and-butter of the City and its lawyers.
For a pot of money, you buy a stake in a project which you can later sell at a profit. The critical thing about equity finance, which is why some people don’t like it, is that this stake buys you a slice in the management and control of projects.
Equity financiers, by buying stakes in PFI, exert from a distance a lot of control on our current NHS. This is a subject that no mainstream politician wishes to talk about; except…. bless him… Nigel Farage.
Nigel Farage may have become public enemy number 1 over their previous commments suggestive of privatising the NHS, but it is still not out of the question that Nigel Farage or Alex Salmond become Deputy Prime Minister in a formal coalition or a supply-and-confidence government led by Labour following May 8th 2015.
According to a Guardian analysis of contracts that were sanctioned by the Treasury dating from 2012, the cost of Britain’s controversial private finance initiative will continue to soar for another five years and end up costing taxpayers more than £300bn.
Andy Burnham MP continues to argue that Labour will return to the NHS to ‘people before profit’.
But Burnham has previously admitted PFI is problematic.
And all the mood music sounds as if Burnham is ‘seeing red over PFI’. Literally.
“We made mistakes. I’m not defending every pen-stroke of the PFI contracts we signed.”
Due to the costs of PFI, many NHS hospitals have found themselves struggling to pay for safe staffing in their budgets. It was recently reported that half of NHS workers would not receive a 1% pay rise.
Despite recent coalition criticism suggesting that the government was going cold on the scheme, published figures from the current Government have indicated that repayments will continue ballooning until they peak at £10.1bn a year by 2017-18.
According to the Guardian newspaper from 2012, the 717 PFI contracts currently under way across the UK are funding new schools, hospitals and other public facilities with a total capital value of £54.7bn, but the overall ultimate cost will reach £301bn by the time they have been paid off over the coming decades.
Equity investors have helped to deliver many public sector infrastructure projects via the Private Finance Initiative and have managed them in ways from which the public sector can learn.
Against a background of limited information, evidence gathered by the National Audit Office raises concern that the public sector is paying more than it should for equity investment. This report was published in February 2012.
The report still makes for interesting reading.
“Banks or bondholders provide around 90 per cent of the project funding for a PFI project on the condition that the remaining money is provided by the investors as risk capital or equity, which will be lost first if the project runs into difficulty.”
“Investors are rewarded for taking risks. The risks the investors bear are mainly the costs of bidding; that their contractors may fail to perform; or that other project costs the investors bear the risk for will be higher than envisaged. However, the investors limit their risk by passing it to their contractors. In addition, the government is a very safe credit risk and many projects such as hospitals and schools are repeat projects.”
“The Treasury and departments to date have relied on competition to secure efficient pricing of the contract but have not gathered systematic information to prove the pricing of equity is optimal. The NAO report identifies three potential inefficiencies in the pricing of equity. These are the time and costs of bidding; minimum rates set by investors, which sometimes do not reflect the actual risks the project will face; and bank requirements.”
The NAO report argued that, generally, public sector authorities have not been equipped with the skills and information required to challenge investors’ proposed returns rigorously. The NAO shows how further analysis during the bidding process would help authorities to assess the reasonableness of the investor returns. As an illustration, the NAO estimates that around 1.5 per cent to 2.2 per cent of the annual service payments in three projects it analysed were difficult to explain in terms of the main risks investors said they were bearing.
“Some investors in successful projects have gone on to sell shares in their equity to release capital and fund new projects. This has also resulted in accelerating the receipt of their returns. Analysis by the NAO has shown that investors selling shares early have typically earned annual returns of between 15 per cent and 30 per cent. The NAO recommends that the Treasury should use its current review of PFI to consider alternative investment models that limit the potential for very high investor returns in relation to risk.”
A future Labour Government will have to confront PFI, as it is an integral component of why the NHS is facing difficulties. A future Government could have the power to cancel or substantially renegotiate PFI projects where it could be proved that taxpayers were not receiving value for money.
It is also critical that the Government has the critical skills and expertise to use its huge buying power to obtain better deals, if it remains keen to pursue this policy route. It is already hardly coping with the deluge of contracts being put out to tender under section 75 Health and Social Care Act (2012), but Labour plans to repeal that Act in its first Queen’s Speech of the next parliament.
Unfortunately, total repeal of the Health and Social Care Act (2012) will have absolutely no effect on the operational or strategic management of PFI in the NHS.
Margaret Hodge has thankfully spoken out very vociferously about the problems with PFI under successive Governments.
“A rotten deal”
I agree with Margaret (full account here).
Andy needs to keep up the pressure on this.
The general public have never needed the NHS campaigners as much before. The situation is critical.
“The past is a different country. They did things differently there.’
One of the favourite weapons in the armoury of supporters of the present Coalition is that the warning claims over the NHS have been in the past ‘exaggerated’ or ‘scaremongering’.
And yet today broke records being broken, for the longest waits in the Accident and Emergency departments in England; and a record number of emergency admissions.
The National Health Service currently has a statutory duty to promote innovation. But nobody would have thought that Mr. Hunt (who is not a professional surgeon, or professional medic, to my knowledge) would have ‘done things differently'; by adding a ‘Spring Crisis’, ‘Summer Crisis’ and ‘Autumn Crisis’ to a ‘Winter Crisis’.
Put simply, sadly the claims by NHS supporters do not constitute merely ‘scaremongering’. It may have been urgent to ‘save the NHS’ in the past; as indeed Labour had to do in 2007 when the service was teetering on the brink last time. But the situation is now critical.
The last few years have seen a litany of errors in public health policy; such as in standard packaging of cigarettes, or minimum pricing of alcohol. It has been impossible for the Conservatives and the Liberal Democrats, who are both devoted to the multinational free movement of capital, to act in the true public interest.
But by far the worst event to have happened were the Conservatives and Liberal Democrats getting onto the state books the ‘Health and Social Care Act’.
The Liberal Democrats’ contribution to this statutory instrument cannot be underestimated by any means. Despite the noblest actions of a minority of ‘good LibDems’, such as Dr Charles West, the cheap words of some LibDems Peers in the debate over the toxic ‘section 75′ made their position perfectly clear.
Section 75 of ‘the Lansley Act’, which senior Conservatives now claim not to have understood, couldn’t have been clearer. It was a clear departure from the previous law. It laid out a clear threat in law for the first time a legal threat to any commissioners departing from putting contracts out to formal competitive tender, if there were not a sole bidder.
The Liberal Democrats, Conservatives and UKIP may now show what can best be described as ‘amnesia’ over this instrument which some of them actually legislated for, as well as the £3bn ‘top down reorganisation’ which David Cameron swore blind would never be introduced, but “the facts speak for themselves”: or, as my learned legal colleagues, put it, ‘res ipsa loquitur’.
Andy Burnham MP this morning in an article in the New Statesman laid bare the sheath of lies by Nick Clegg in the House of Parliaments over the NHS.
Sadly, while Jeremy Hunt and Dan Poulton fiddle while the NHS collapses, there is a record number of admissions in emergency departments in England, and the most vulnerable people are labelled ‘bed blockers’ by a supine and ineffective English media as they cannot leave hospital to a social care system which has now collapsed through starvation.
Labour argues that it last used the private sector in needing to address a ‘backlog’ in demand, but the question is how the NHS get to this state in the first place? It’s because for decades, as NHS campaigners rightly argue, the NHS and social care systems have been given the bare minimum to carry out their functions.
NHS managers, many of whom are generously paid more than their ability might suggest, and certainly much more than frontline nurses implementing a policy savaged by staffing cuts in the name of ‘efficiency savings’, have been trying to balance the books through a number of mechanisms, such as laying off staff, not giving existent staff a pay rise, or paying corporates loan repayments for PFI or lawyers for doing their administration.
Labour possibly can argue then it was a temporary measure to pay off people in the private sector to do the work the NHS had been carrying out, but the mainstream parties should be in the business of delivering a well functioning NHS. As Andy Burnham MP said in launching his party’s campaign on the NHS in the European Election in 2014, we’ve got a sad state when the Conservatives and LibDems are competing for the lowest social care bills irrespective of whether the services are awful.
And it’s sacracant to criticise the NHS managers, but any reasonable guardian of these managers will ask why they have allowed their own senior pay to balloon;
why performance management of Doctors and nurses in the NHS is so poor, with performance management being regularly done by the regulator not by human resources;
why so much money has been siphoned off for ‘transaction costs’ of law and admin the implement the NHS reforms;
why PFI contracts have been so poorly negotiated such that the cost to the State is enormous;
how come so many private providers are being directly paid out of the NHS monies provided by taxpayers;
why there seems to be an enthusiasm to pay short-term locum staff at exorbitant rates instead of investment in the current workforce;
and so on?
The Health and Social Care Act (2012) drove the NHS over the edge. Put simply, the NHS and social care systems would not be able to survive another sudden legislative mechanism designed to privatise the NHS?
On this Camilla Cavendish is simply incorrect. You would have thought with all her experience she should have come up with a better definition of ‘privatisation’ on BBC Question Time last night. it is the standard argument of those who say it is not privatisation to say that privatisation is accompanied by a ‘tell Sid’ type flotation (also called the “initial public offering’).
It is not.
Privatisation is simply wholesale transfer of assets and resources from the public sector to the private sector.
There has been every possible last-ditch effort to deny this was NHS privatisation from the current neoliberal Coalition parties. It is definitely privatisation. The taxpayer is paying private companies for functions which the State should be providing, without private companies footing properly their part of the ‘bill’ including for training of the current workforce of professionals.
The ratcheting up of how ‘it is not privatisation’ or ‘we should look at whether private provision is a bad thing’ is a testament to this.
Quite simply, the NHS would not survive another five years of the Conservatives. We should rally around NHS campaigners of all parties to ensure the Conservatives and Liberal Democrats are not re-elected nationally to run the NHS for their benefit.
The National Health Service is not supposed to be run for the benefit of private sector ‘rent seekers’, or MPs who also have interests in the private health industry. Keep our NHS public. Keep the NHS National run for the public good.
Support your NHS campaigner. He or she needs you.
George Osborne’s “duty of candour”
I’m pretty certain that George Osborne is actually quite a nice guy.
I know of people who know people who’ve had dealings with him on a chat-chat level. And apparently he’s perfectly harmless.
George Osborne’s one job was to run the UK economy. And he’s failed at that.
The LibDems had a job to deliver to deliver ‘a strong economy and fair society’. Add in the murder of English legal aid, we can confidently say the LibDems failed on their side of the bargain.
It doesn’t matter which particular metric you wish to use. The only good soundbites came from the rose garden soundbites from the Office for Budget Responsibility in 2010 informing us of the shiny uplands.
But it turns out that the incline of the uplands was steeper than we first thought. Osborne kept on telling us this was due to the Eurozone crisis. This is the same Eurozone crisis which has suddenly disappeared with one us being one of the ‘best performing economies’ in the G20.
Osborne’s pitch is that he needs just a little more time, as the famous Reet Petite song goes. He needs to ‘finish the job’ to put the UK back ‘on the path to prosperity’. This is the “long term economic plan”.
Except… the long term economic plan is not working. A record number apparently in employment with really bad income from as receipts? How did that happen?
Was it something, perhaps, to do with a record number on low security “zero hour contracts”, topped up with tax credits, who do not end up paying much income to the State?
The Conservative (Ronald Reagan) doctrine of a small state is creepy. The drastic diet of an ‘over bloated’ State has left a State which is anorexic – and which is dangerously fragile.
The Coalition’s anorexic state is consequently far from resilient. Most reasonable people agree that the anorexic State would simply be unable to cope with the Conservatives’ further planned cuts in the next term of office.
This is not the “shock doctrine” of Greece. It is a reality of something happening in the UK not seen since the 1930s.
The current Government has successfully relaunched the ‘duty of candour’. The duty of candour, about being open in the NHS when a mistake is made, already existed in the regulatory codes of the clinical professionals.
And again – it’s not actually the legal instrument as drafted which is the main problem (though there are problems here). It’s whether anyone is observing them properly: see for example ‘wilful neglect’ (section 44 Mental Capacity Act), national minimum wage, or deprivation of liberty safeguards.
Osborne does not want to come even close for apologising for the record debt, the colossal borrowing, the poor living standards, or the fact that his plan to pay off the deficit has been tragically bad.
I don’t know whether this is a pride thing, but in the real world it has a knock on effect for whether you can pay for health and care. We know the social care budget has been on its knees for years.
Many NHS Trusts are in deficit. This can’t be due to the nurses, most of whom have not experienced a pay rise for years. It may be due to the salaries of top CEOs in the NHS who have to ‘deliver’ on metrics which do not necessarily reflect high quality care (e.g. the ‘four hour wait’). Or it could be due to paying off the loan prepayments for PFI under successive governments.
I really like members of the NHS campaigning parties, but discussions about the NHS have to be linked with the discussions of the state of the economy. It’s an elephant in the room.
Likewise, for all of the slagging off of the Efford Bill, I can guarantee that the statutory instrument UKIP would like to introduce would be far more controversial.
UKIP at least do entertain a discussion on leaving Europe and European law, sort of, even if they do not have any plans for the UK economy.
The Efford Bill was seen in some quarters as ‘the trojan horse for privatisation’, and I can see how interpretation of the clauses might result in this conclusion. I think a problem the Efford Bill was ‘reverse engineering’ to comply with EU competition law – i.e. clauses which perhaps sound as if they’re providing exemptions from EU law, but nobody actually knows.
Not even the best legal minds in the country, of which I am not one, know.
But the EU is founded on free movement of people. Tick – I remember working as a junior in NHS hospitals in London, and simply the day to day operations of these Trusts would have been impossible without the hard work of staff nurses predominantly from India and the Philippines.
And it is also founded on free movement of capital.
There is a genuine feeling of ‘I wouldn’t start from here’ for NHS campaigners in NHAP and Keep our NHS Public. They certainly want to go to a NHS inspired by Nye Bevan which had never heard of section 75 or TTIP.
But it is impossible to have this debate in the absence of a discussion of Europe. It’s impossible to have a debate on the NHS in the absence of a wider debate on the economy.
Russell Brand and Nigel Farage may be grandstanding, but on the face of it they seem to be coming from different places, and with huge followings.
This all matters as it is highly unlikely a Labour-UKIP coalition could be made to work on the NHS, given we know such little about what accommodations UKIP might make on EU competition law or the economy.
We don’t know whether UKIP supports ‘efficiency savings’ however.
All of this is not a leading to a conclusion of ‘Vote Labour’. Labour has not overtly apologised for some thorny apsects of NHS policy, in the same way that Osborne has not apologised over the economy. But it does seem to have apologised for a lot – like letting the market in too far – but curiously not PFI?
I am particularly mindful that there are some ‘real’ experts in NHS policy who are far more experienced and wiser than me. I am also in strong admiration of campaigners wherever they hail from; many of whom have experience of seeing patients regularly.
I never see patients unless they’re friends of mine; and that’s purely for social reasons.
But the next Government’s policy on the NHS will be severely affected by the mistakes of the current Government, part of which ironically has a catchphrase ‘strong economy, fair society’.
Clinical nursing specialists for dementia put the precise rôle of the third sector to the test
Ed Miliband, most people agree, is set to be the leader of the largest party at Westminster next year at least. This would give him overall charge of the legislature and the executive on 8 May 2015.
He has also pledged to produce 20,000 extra nurses, though talk is cheap. George Osborne has failed on virtually all ambitions that were set for the economic performance of the current Government. The Conservative-Liberal Democrat coalition therefore bequeath the next Government with a society with a terrible frail economy.
This UK economy is essentially a bargain basement one. It is easy to spot the major fault with ‘the record number of jobs’ meme, as the actual till receipt income is very low. And yet the Conservative want to pay for tax cuts – we’ve gone from an over bloated state to an under nourished one.
I had the enormous pleasure, with two other Dementia Friends Champions Chris Roberts and Jayne Goodrick, of giving a Dementia Friends information session at my law school yesterday. I can’t praise enough the amount of support we were given from the people who run Dementia Friends.
Forgive my photography. I am no David Bailey*. We actually had a good turnout, but I managed to capture the part of the audience which was very lean. Chris Roberts (@mason4233) lives well with a mixed type of dementia, thought to be a mixed Alzheimer’s disease and vascular dementia.
Somebody came up to me at the end of the audience and said, “It was absolutely brilliant as it was just incredible to see for my own eyes somebody living well with dementia.”
The “Dementia Friends” initiative has been a successful one. From the Alzheimer’s Society, and supported at a distance by Public Health England, it is modelled on the Japanese ‘caravan befriending’ movement. Its aim in policy terms was to break down the stigma, prejudice and discrimination which can happen against people living with dementia. These factors can contribute to the social isolation often experienced by people on receipt of a probable diagnosis.
“Dementia Friends” has been brilliant for myth busting, with actual facts about dementia too.
Recently, Kate Swaffer (@KateSwaffer), leading international advocate living well with dementia, and working with Alzheimer’s Australia, leading for the Dementia Alliance International, met Dennis Gillings this week in a small group of people for dinner. Gillings is the newly appointed World Dementia Envoy.
For reasons which are completely inexplicable, there is no established substantial representation on that panel from the communities of people living with dementia or caregivers, although Hillary Doxford was documented in the Communiqué of the last meeting just gone.
When Dennis met Kate recently, Kate quipped, typically characteristically in a beautiful tongue-in-cheek manner, she had not ben dribbling into her soup (Kate’s blogpost here).
But “Dementia Friends” is an interesting example of a private-public initiative with a £2.4 million funding base. Had this been left entirely to ‘market forces’, it is unlikely there would have been national outreach for this unique project. Inevitably the topic in policy terms is whether the substantial cost of Dementia Friends is offset by the value of raising the profile of dementia and caregivers. Where it might fail on its outcomes, and time will tell, is how the pledges of turning communication into action are actually hard evidenced through the number of pledges (irrespective of whether it will hit its target of one million within an extended deadline of the end of 2015).
In my opinion, it has been.
Two days previously, I enjoyed being at the Methodist Central Hall for a day for the Dementia Action Alliance.
And yet it is also true that social care is on its knees.
You don’t have be a great story teller to communicate a tale of the NHS on its knees.
This is somewhat cognitively dissonant with MPs wearing their Dementia Friends badges with pride, one could argue.
I agree with Jeremy (tweet here) in that the third sector should not need to apologise for fundraising. Making a surplus for a charity is a raison d’être for a charity akin to the duty to maximise shareholder dividend for a business.
But larger charities share many operational and cultural characteristics with corporates conceivably, and therefore the principles of a good ‘corporate citizen’ could easily apply to large charities with substantial revenues.
Sube Banerjee, long time supporter of the Alzheimer’s Society, and, perhaps more significantly here, co-author of the previous 2009 English dementia strategy came to the Dementia Action Alliance table with some noteworthy criticisms of how the current strategy had been executed.
Firstly, Sube, now a Chair of dementia at the Brighton and Sussex Medical School, commented on the devaluing of the ‘cost’ of a diagnosis to £45, and commented specifically on the culture of a ‘high quantity low quality’ approach to diagnosis.
Indeed, the 2009 English dementia strategy, called ‘Living well with dementia’, refers to the need for high quality diagnosis.
And the English dementia policy as it was then, before it got taken over by the Prime Minister’s Dementia Challenge, due to expire next March 2015, also warned about the lack of post-diagnostic support.
People living with dementia, and their family members, have consistently remarked to me how they have been told by medical professions that their rôle is at the very start and very end of “the dementia journey”. They won’t be there for them in between.
We are all aware of recent findings that 9 out of 10 care homes failing to meet standards set by the regulator the Care Quality Commission, reported not just in the Daily Mail.
So there is an overwhelming sense that people with a possible diagnosis of dementia are being set up for a fall by an inadequate care system, which is disjointed, increasingly privatised, and undervalued.
One of the undesirable consequences of this bargain basement economy is the sheer undervaluing of paid carers on zero hour contracts, some not even getting any travel expenses or the national minimum wage.
This poses serious questions about us as a society. So does the lack of support we appear to be giving unpaid family caregivers, an army of which nearing a million are the backbone of the entire system.
But Jeremy’s tweet does also pose serious questions about what charities could or should fundraise for. I say this as I remember one of own interview questions to read medicine at Cambridge – which I did between 1993 and 2001 – “to what extent should charities take the place of a properly funded NHS?”
Well, this question has taken on a new twist. I do not see there to be a ‘competition’ as such between ‘dementia advisers’ of one charity and ‘specialist nurses’ from another third sector charity. I think they co-exist. ‘Dementia advisers’ are possibly more useful for the more independent parts of the support of “the dementia journey”. ‘Specialist nurses’ are pivotal at all parts, including the care part of ‘the dementia journey’.
It has struck me how not only cost effective clinical specialist nurses are, in providing proactive case management for people with dementia with personalised care plans, ‘nipping in the bud’ complications from medical conditions. I know internationally one of the campaigning for fundraising themes is the substantial co-morbidity of dementia. People living with dementia often have a plethora of other problems, such as in joints, heart or lung.
Sally Greengross has long made it been known that the post diagnostic support for dementia is not good enough. Sally Greengross is the current Chair of the All Party Parliamentary Group on dementia. Her predecessor, Jeremy Wright MP, currently the Government’s Attorney General, launched the highly successful policy here in England of an ambition to reduce the number of inappropriate prescriptions for antipsychotics predominantly in care homes.
Hospitals can be some of the worst places a person with dementia to end up in. Likewise, it shouldn’t be conceived that secondary hospital care is necessarily synonymous with someone who has ‘failed’ somehow. But, say, end of life nurses will be able to provide expert help, wherever the appropriate care setting is deemed to be for a person living with dementia (and his/her friends or family).
And it is therefore possible charities such as Dementia UK and others might be able to fill these gaps in service provision. For a start, clinical nursing specialists comprise an innovative way of delivering the dementia post-support service. And the NHS has a statutory duty to promote innovation.
However, I should say that that statutory clause (14X) on CCGs is from the much loathed Health and Social Care Act (2012), about to be repealed by the next Labour government.
It is sometimes the case innovation can be incubated in places other than the NHS, and we’ve already seen a lot of goodwill and real-life financial support for Macmillan nurses. It would be impossible now to think of palliative care for nursing in cancer to be without Macmillan nurses – and the prime contractor model could be a way of providing sustainability in critical areas of services. This is ONLY provided that the quality and cost effectiveness components are managed correctly and for the benefit of the taxpayer. The next Labour government wishes to bring out a huge systemic innovation of integrating health and care into whole person care. This is long overdue, as, for example, it is impossible in places to discharge NHS patients to social care in s timely fashion. This is not cost effective; it is insulting particularly to patients including frail old citizens who do not wish to be in hospital anyway, and do not deserve the pejorative insulting label of “bed blocker”.
I am sure Alistair (@ABurns1907), or whoever ends up predominantly penning the new English dementia strategy, will wish to give careful consideration to how this post diagnostic support can be provided. Jeremy has a point, but up to a point.
*Joke by @JayneGoodrick.
