“But in the final months of my mum’s life last year, our family saw both the best of the NHS and things that need to change – like a microcosm of the national strategic challenge. We saw fantastic GP support, great specialist cancer services and unbelievably supportive hospice care. We also saw insufficient community support (not enough district nursing and too few hours of home support via continuing health care). But this was not just an issue of insufficient resources in the wrong places, there were also problems related to a lack of shared decision making. My mum felt too powerless in the face of decisions made by systems that professionals felt they had to go along with and managers enacted.”

“Personal Health Budgets and the left – less heat more light please”

This article is an excellent overview of personal health budgets by Martin Routledge.

Currently in England, according to the Government, more than 15 million people have a long term condition – a health problem that can’t be cured but can be controlled by medication or other therapies. This figure is set to increase over the next 10 years, particularly those people with 3 or more conditions at once. Examples of long term conditions include high blood pressure, depression, and arthritis. Of course, a big one is dementia, an “umbrella term” which covers hundreds of different conditions. There are 800,000 people in the United Kingdom who are thought to have one of the dementias. However, a thrust of national policy has been directed at trying to remedy the diagnosis rate which had been perceived as poor (from around 40%).

The Mental Health Foundation back in 2009 had publicly set out a wish that there would be a high level of satisfaction among people living with dementia and their carers with planning and arranging the ongoing support they receive via the different forms of self-directed support, and that specific examples and stories of real experiences, both positive and negative, in the use of the different forms of self-directed support will have been shared. Indeed, various stories have been fed into the media at various points in the intervening years.

People, however, tend to underestimate the extent to which GPs cannot treat underlying conditions.

For example, a GP faced with a headache, the most common neurological presentation in primary care, might decide to treat it symptomatically, except where otherwise indicated.

A GP faced with an individual which is asthmatic may not have a clear idea about the causes of shortness of breath and wheeziness, but might reach for his or her prescription pad to open up the airways with a ‘bronchodilator’ such as salbutamol.

However, this option not only does not work effectively for memory problems in early Alzheimer’s disease for many (although the cholinesterase inhibitors might have some success in early diffuse Lewy Body’s Disease). It is also very relatively expensive for the NHS compared to other more efficacious interventions, arguably.  In September 2013, it was reported that treatment of mild cognitive impairment with members of a particular class of medications, called “acetylcholinesterase inhibitors” was ‘not associated with any benefit’ and instead carried with them an increased risk of side effects, according to a new analysis. The “meta-analysis” – published in the Canadian Medical Association Journal – looked at eight studies using donepezil, rivastigmine, galantamine and memantine in mild cognitive impairment.

These experts argued that the findings raised questions over the Government’s drive for earlier diagnosis of dementia, but the issue is that medications may not be the only fruit for a person with dementia in the future. One aspect of ‘liberalising the NHS’, a major Coalition drive embodied in the Health and Social Care Act (2012), is that clinical commissioning groups can ‘shop around’ for whatever contracts they wish, with the default option being competitive tendering through the Regulations published for section 75.  When a person receives a timely diagnosis for dementia, it’s possible that a “personal health budget” might be open to that person with dementia in future.

A personal budget describes the amount of money that a council decides to spend in order to meet the needs of an individual eligible for publicly funded social care. It can be taken by the eligible person as a managed option by the council or third party, as a direct (cash) payment or as a combination of these options. At their simplest level, personal budgets involve a discussion with the service user/carer about how much money has been allocated to meet their assessed care needs, how they would like to spend this allocation and recording these views in the care plan. Personal budgets differ from personal health budgets, and from individualised budgets, and you can read an overview of them here.

For some, the debate about ‘personal health budgets’ is not simply an operational matter. They are symbolic of two competing political philosophies and ideologies. A socialist system involves solidarity, cooperation and equality (not as such “equality of provider power” such as the somewhat neoliberal NHS vs ‘any qualified provider’ debate). A neoliberal one, encouraging individualised budgets, views the market in the same way that Hayek and economists from the Austrian school view the economy: as one giant information system where prices are THE metric of how much something is worth. In contrast, the “national tariff” is the health version of interest rates, artificially set by the State. Strikingly, cross-party support is lent in the implementation of this policy plank, largely without a large and frank discussion with members of the general public at election time.

A major barrier to having a coherent conversation about this is that the major protagonists promoting personal budgets tend to have a vested interest in some sort for promoting them. That is of course not to argue that they should be muzzled from contributing to the debate. But it’s quite hard to deny that personal health budgets not offer potentially more choice and control for a person with dementia (possibly with a carer as proxy), unless of course there’s “no money left” as Liam Byrne MP might put it.

With the introduction of ‘whole person care’ as Labour know it, or ‘integrated care’ as the Conservatives put it, it is likely that policy will move towards a voluntary roll-out of a system where health and social care budgets come under one unified budget. No political party wishes to be seen to compromise the founding principle of the NHS as ‘comprehensive, universal and free-at-the-point-of-need’ (it is not as such ‘free’, in that health is currently funded out of taxation), but increasingly more defined groups are being offered personal budgets. Personal health budgets could lead to a change of emphasis from expensive drugs which in the most part have little effect, say to relatively inexpensive purchases which could have massive effect to somebody’s wellbeing or quality of life. Critics argue that, by introducing a component of ‘top up payments’, and with the blurring of boundaries between health and social care with very different existant ways of doing things, that ‘whole person care’ or ‘integrated care’ could be a vehicle for delivering real-time cuts in what should be available anyway.

On Wednesday 9 October 2013, Earl Howe, Lord Hunt and Lord Warner didn’t appear to have any issue about a duty to promote wellbeing in the Care Bill, though they differ somewhat on who should promote that particular duty. This is recorded faithfully in Hansard.

Wellbeing is certainly not a policy plank which looks like disappearing in the near future. Norman Lamb, Minister for State for Care Services, explicitly referred to the promotion of wellbeing in dementia in the ‘adjournment debate’ yesterday evening:

“There is also an amendment to the Care Bill which will require that commissioning takes into account an individual’s well-being. Councils cannot commission on the basis of 15 minutes of care when important care work needs to be undertaken. They will not meet their obligation under the Care Bill if they are doing it in that.”

The broad scope of the G8 summit was emphasised by Lamb:

“The declaration and communiqué announced at the summit set out a clear commitment to working more closely together on a range of measures to improve early diagnosis, living well with dementia, and research.”

And strikingly wellbeing has not been excluded from the dementia strategy strategy at all.

This is in contradiction to what might have appeared from the peri-Summit public discussions which were led by researchers with particularly areas in neuroscience, much of which is funded by industry.

Norman Lamb commented that:

“Since 2009-10, Government-funded dementia research in England has almost doubled, from £28.2 million to £52.2 million in 2012-13. Over the same period, funding by the charitable sector has increased, from £4.2 million to £6.8 million in the case of Alzheimer’s Research UK and from £2 million to £5.3 million in the case of the Alzheimer’s Society. In July 2012, a call for research proposals received a large number of applications, the quality of which exceeded expectations. Six projects, worth a combined £20 million, will look at areas including: living well with dementia; dementia-associated visual impairment; understanding community aspects of dementia; and promoting independence and managing agitation in people with dementia.”

In quite a direct way, the issue of ‘choice and control’ offered by personal health budgets needs to be offered from parallel ‘transparency and disclosure’, in the form of valid consent, from health professionals with persons with dementia in discussing medications. With so many in power and/or influence clearly trumping up the benefits of cholinesterase inhibitors, with complex and costly Pharma-funded projects looking at whether any of these drugs have a significant effect on parts of the brain and so forth, both persons and patients with dementia need to have a clear and accurate account of the risks and benefits of drugs from medical professionals who are regulated to give such an account. This is only fair if psychological (and non-pharmacological) treatments are to be subject to such scrutiny particularly by the popular press.

The personal health budgets have particular needs, and they are obvious to those with medical knowledge of these conditions. Quite often there might be a psychological reaction of denial about the condition and needs, associated the stigma and personal fear about ‘having’ dementia; but this can be coupled with a lack of insight into the manifestations of dementia, such as the insidious behavioural and personality changes which can occur early on in the behavioural variant of frontotemporal dementia. There might also fluctuating levels of need on a day to day basis; like all of us, people with dementia have ‘good days and bad days’, but some subtypes of dementia may have particularly fluctuating time courses (such as diffuse Lewy Body Dementia). Apart from the very small number of cases of reversible or potentially treatable presentations which appear like dementia, dementia is a degenerative condition and so abilities and needs change over time. This can of course be hard to predict for anyone; the person, patient, friend, family member, carer or professional.

So having laid out the general direction of travel of ‘personal budgets’, it’s clearly important to consider the particular challenges which lie ahead. In the Alzheimer’s Society document, “Getting personal? Making personal budgets work for people with dementia” from November 2011, a survey for “Support. Stay. Save.” (2011) is described. This survey was conducted in late 2010, and comprised people with dementia and carers across England, Wales and Northern Ireland. In total there were 1,432 respondents. The survey asked whether the person with dementia is using a direct payment or personal budget to buy social care services. 204 respondents said that they were using a personal budget or direct payment to purchase services and care. In total 878 respondents had been assessed and were receiving social services support, meaning that 23% of eligible respondents were using a personal budget or direct payment arrangement. Younger people with dementia and their carers appeared more likely to have been offered, and be using, direct payments or personal budgets than older people with dementia.

This is intriguing itself because the neurology of early onset dementia. Two particular diagnostic criteria are diffuse Lewy Body dementia which tends to have a ‘fluctuating’ time course in cognition to begin with, and the frontotemporal dementias where memory for events or facts (“episodic memory”) can be relatively unimpaired until the later stages. Clearly, the needs of such individuals with dementia will be different from those who have the early onset of Alzheimer’s disease, where episodic memory is more of an issue. Such differences will clearly have an effect on the types of needs of such individuals, but it can be argued that the patient himself or herself (or a proxy) will be in a better position to know what those needs might be. A person with overt problems in spatial memory, memory for where you are, might wish to have a focus on better signage in his or her own environment for example, which might be a useful non-pharmacological intervention. Such a person might prefer a telephone with pictures of closest friends and family to remind him or her of which pre-programmed functional buttons. Such a small disruptive change could potentially make a huge difference to someone’s quality of life.

As the dementias progress, nonetheless, it could be that persons with dementia benefit from assistive technologies to allow them to live independently at home wherever possible. This is of course a rather liberal approach. It is a stated aim of the current Coalition government that they want to help people to manage their own health condition as much as possible. Telehealth and telecare services are a useful way of doing this, it is argued. According to the Government,  at least 3 million people with long term conditions could benefit from using telehealth and telecare. Along with the telehealth and telecare industry, they are using the 3millionlives campaign to encourage greater use of remote monitoring information and communication technology in health and social care. It is vehemently denied by the Labour Party that ‘whole person care’ would be amalgamated with ‘universal credit’, forging together the benefits and budget narratives. Apart from anything else, the implementation of universal credit under Iain Duncan-Smith has been reported as a total disaster. But there is a precedent from the Australian jurisdiction of the bringing together of the two narratives, as described by Liam Byrne and Jenny Macklin in the Guardian in September 2013. In this jurisdiction, adapting to disability can mean that your benefit award is in fact LOWER. If the two systems merged here – and this is incredibly unlikely at the moment – a person with disability and dementia in a worst case scenario could find that what they gain in the personal budget hand is being robbed to pay for the benefits hand. Interestingly, in the Australian jurisdiction, personal health budgets have an equivalent called “consumer directed care”, which is perhaps a more accurate to view the emerging situation?

There are of course issues about the changing capacity of a person with dementia as the condition progresses, and this has implications for the medical ethics issues of autonomy, consent, ‘best interests’, beneficience and non-maleficence inter alia. Working through carers can be seen a good enough proxy for working directly with the person with dementia, and of course a major policy issue is a clear need to avoid financial abuse, fraud and discrimination which can be unlawful and/or criminal under English law. However this in itself is not so simple. A person with dementia living with dementia, and his or her carer(s) should not necessarily be regarded as a ‘family unit’. Furthermore, caring professional services – both general and specialist, and health and social care – may not be signed up culturally to full integration, involving sharing of information. For example, we are only just beginning to see a situation where some care homes are at first presentation investigating the medical needs of some persons with dementia in viewing their social care (and not all physicians are fluent in asking about social care issues.) It is possible that #NHSChangeDay could bring about a change in culture, where at least NHS professionals bother asking a person with dementia about his perception and self-awareness of quality of life. This is indeed my own personal pledge for staff in the NHS for #NHSChangeDay for 2014.

I, like other stakeholders such as persons with dementia, can appreciate that the ground is shifting. I can also sense a change in direction in weather from a world where people have put all their eggs in the Pharma and biological neuroscientific basket. Of course improved symptomatic therapies, and possibly a cure, one day would be a great asset to the personal armour in the ‘war against dementia’. Of course, if this battle is won, the war to ensure that the NHS is able to provide this universally and free-at-the-point-of-need is THE war to be won, whatever the direction of ‘personal health budgets’. But I feel that the direction of personal health budgets has somewhat a degree of inevitability about it, in this jurisdiction anyway.

Thanks to @KateSwaffer for help this morning too.