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Fighting stigma and increasing dementia awareness are unfinished battles in dementia policy

It would be wrong to consider that it was “job done” with fighting stigma and increasing dementia awareness in English dementia policy, or indeed “mission accomplished”.

Despite the millions of pounds thrown at the Alzheimer’s Society and Public Health England, with clear advantages for the reputation and PR of the Alzheimer’s Society and their supporters, and the marketing agencies to which dementia awareness campaigns were outsourced, we stilll have a remarkably bad idea about whether this extensive public-private partnership changed any perceptions of living with dementia.

We know that newspaper headlines are still littered with the words ‘victim’ and ‘sufferer’ on an almost daily basis.

One of the ironies of the ‘Dementia Friends’ programme is that it has almost become a stock phrase in the highly scripted quasi social movement that ‘you are not supposed to go round making friends with people with dementia’. This is presumably a safeguarding issue, but the idea of making friends in other jurisdictions such as Japanese version was to combat social isolation.

And let’s talk about befriending, shall we? We know that befriending makes a ‘distinctive’ contribution to dementia services and has been specifically recommended in order to  improve quality of life of people with dementia and carers. The befriending relationship in a recent study was indeed “felt to be a personal and human experience, which befrienders felt was deeply meaningful and emotionally powerful. Befrienders’ experiences with their befriendees often prompted learning, including seeing past dementia stereotypes, challenging their personal boundaries, and reflecting on existential matters of love and life.”

To give ‘Dementia Friends’ credit, there has been a huge amount of work constructively done for cultural outreach for culturally diverse groups. It has been suggested that the under-representatio of minority ethnic groups in dementia services may be due to cultural stigma attached to dementia, lack of knowledge of dementia and little awareness of services. We know from research with South Asian and East European groups in the United Kingdom suggests that there is greater cultural stigma attached to a diagnosis of dementia and therefore additional consequences of being diagnosed with dementia for those from minority ethnic backgrounds.

Another burning issue with the mass marketing of a ‘dementia awareness’ programme to millions like ‘Dementia Friends’ is that it is extremely important to get the content right. We know that ‘Dementia Friends’ is virtually silent on risk reduction, and yet public understanding of dementia risk reduction is currently very low. It is thought from recent research that there are several reasons for this:

“firstly, the stigma of dementia and mental illness generally does not foster engagement; secondly, the evidence supporting the case that behavioural or environmental modification will reduce dementia risk on an individual basis has been perceived as too weak to support widespread public information dissemination or other behaviour change mechanisms”.

And whatever progress has actually been made with “Dementia Friends”, it is completely inadequate to meet the training needs of NHS and social care staff. One of the biggest myths which has taken hold, and a big problem in commissioning, is that Dementia Friends is adequate “training” in care homes.

Look at an excellent recent paper by Suzanne Timmons (2016) entitled “Acute hospital dementia care: results from a national audit” [Timmons et al. BMC Geriatrics (2016) 16:113].

One recurrent theme has been the inadequacy of pain relief for people with dementia in acute care, viz:

“Assessment for the presence of pain was poor, with almost one-quarter of patients not being asked about the presence of pain, or receiving any formal assessment. This reflects previous findings that pain is under-assessed in people with dementia. Pain is common in older people with dementia, with up to 45 % experiencing pain. While patients with dementia may not always be capable of communicating pain through self-report, pain can be assessed with tools through caregiver report and direct observation. There are a number of validated tools that assess for indicators of pain, including the Pain Assessment in Advanced Dementia Scale; such tools should be used in cases where verbal communication is not possible.”

And the paper further criticises the quality of dementia awareness amongst professionals, about eight years after the only English dementia strategy co-authored by Prof Sube Banerjee had ever been published. It is worth noting that there has never been any ‘lessons learned’ published from the Department of Health over this  strategy ‘Living well with dementia‘, similar to how there has been no objective review of Dementia Friends.

“The provision of dementia awareness training is poor across hospitals; only two hospitals included it in their induction programmes. None of the 35 hospitals had mandatory training for any staff in dementia awareness, indicating that it is not currently considered a priority. Just over half of hospitals had dementia awareness training available to their nurses and doctors over the previous 12 months. However, almost two-thirds of ward managers reported that staff cover could not be provided for training relating to dementia care, indicating that staffing levels and lack of resources may be a barrier to staff attending any available training. This picture of inadequate dementia training provision for healthcare staff in acute settings has been found elsewhere also. Dementia awareness training should be mandatory for all staff that care for people with dementia in Ireland as it is integral to increasing overall quality of care and reducing staff burden.”

And this matches a troubling finding of the poor dementia awareness in professionals. A 2013–2015 study by Lock and colleagues had concluded that there was variation in dementia awareness provision across health, local authority and third sector
organisations. There were differences in general awareness of dementia care issues, such as knowledge of person-centred approaches, understanding of factors that can influence communication and the impact that diversity, and equality and inclusion can have on an individual’s experience of living with dementia.

It is definitely not ‘mission accomplished’ as certain senior ‘leaders’ in dementia are fully aware.

 

 

Lock SH, Moss DHE. Health Education East Midlands: Report of Mapping Core Learning Outcomes for Dementia Awareness across Training Provision across the East Midlands. Nottingham: Health Education East Midlands, 2015.

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Universalising the best is fine, but being complacent about the worst is unacceptable

As we keep on being reminded by Jeremy Hunt MP, the current Secretary of State for Health, Nye Bevan talked about ‘universalising the best’.

The actual quote is from over seventy years ago, in fact, from the 2nd reading of the NHS Bill (30 April 1946):

“Furthermore – and this is an argument of the utmost importance – if it be our contract with the British people, if it be our intention that we should universalise the best, that we shall promise every citizen in this country the same standard of service, …”

I know people whose lives have been utterly destroyed by bad care in the NHS and social care. Such experiences have left an indelible mark on their life stories that time will never heal.

If you only talk about examples of horrific care, it can be demoralising for people who are working tirelessly to produce good care. We live in a time where the general public have little trust in the motives of politicians, so the invariable initial reaction is that such stories are being pump primed into the media for the purpose of putting the NHS and social care into managed decline.

And these are not party political points.

This is from the Telegraph this year in fact.

“At the age of 72 my mother started showing signs of dementia. At first it was simply forgetting days of the week, but before long she was losing her car and forgetting the way to familiar places. She also became erratic, phoning me 24 times on one day and becoming confused over simple tasks. However, none of us were prepared for the speed in which she was going to decline and, how in a matter of months, she would be sectioned on a mental health ward.

For the first two weeks (what I later learnt is known as the ‘honeymoon period’) all seemed well. My mother appeared to be content in her new surroundings. However, within a few weeks, I noticed that my mother had lost a lot of weight and was looking drawn and pale. I arrived one Sunday morning and all the residents were sitting around watching Jeremy Kyle – no member of staff in sight.

Things went from bad to worse. My mother started banging on doors in tears, screaming at staff and throwing herself onto the floor in rage, only to be ignored or told that she was upsetting the other residents. Her ankles were swollen and she shuffled and wheezed when she walked. She was labeled as ‘challenging’ and ‘attention-seeking’. I was made to feel that she was an inconvenience.

Apart from the occasional walk around the car park, the beautiful garden was never used. As a result I visited on an almost daily basis, taking my mother out for hours at a time. When I dropped her off she would cry. It was heartbreaking. She was put on anti-psychotic drugs and  responded by smearing herself and her room with faeces, some of which I found two days later in her bedside drawer. According to the Department of Health, one third of dementia patients are inappropriately prescribed anti-psychotic drugs. As one member of staff told me, “they do it to make their lives easier”. I was horrified.”

National policy since the publication of Prof Sube Banerjee’s report for the Department of Health (2009) has been to call for action on inappropriate prescribing of anti-psychotics. Using the antipsychotics in this way is an abuse of human rights which are by law inalienable and universal. I have discussed the evidence surrounding abuse of antipsychotics in my first book for Jessica Kingsley Publishers published in July 2015, entitled “Living better with dementia: good practice and innovation for the future.” (Prof Banerjee has written the main foreword to my second book, cited below.)

And this is not an isolated incident – examples of abuse and neglect in care homes exist elsewhere, and can be conceptualised using the framework of Prof Tom Kitwood of ‘malignant positioning’.

Orchid View also flags up whether the regulatory system is ‘fit for purpose’.

The headlines were searing.

Orchid View

The article (section) reads:

“It is the latest scandal to hit the NHS watchdog, which is already under fire for failing to spot the scandal at Morecambe Bay hospital where up to 14 babies died from neglect, and then allegedly trying to cover it up.

The CQC was also accused of not doing more to stop the horrific abuse of disabled patients at Winterbourne View hospital in Bristol. Southern Cross was once Britain’s biggest care home operator, but collapsed with £1billion debts in 2011 after cost-cutting by a private equity firm, leaving 31,000 vulnerable residents stranded.

The inquest heard the multi-million-pound home in Copthorne, near Crawley, had a ‘five star’ feel when it opened in September 2009, and its appearance ‘seduced’ families into believing it was well-run.

But witnesses and former staff told how residents were treated with a lack of respect and dignity, and there were problems with medication and staffing levels. Miss Schofield said: ‘There was institutionalised abuse throughout the home and it started, in my view, at a very early stage, and nobody did anything about it.
‘This, to me, was from the top down. It was completely mismanaged and understaffed and failed to provide a safe environment for residents.”

It’s worth noting that these examples of bad care happened before the massive CQC overhaul. But the same themes kept on running and running around in how neglect and abuse come about in care homes – and these include staff mix, staff culture, staff training and performance. I discuss these topics in my new book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach” to be published by Jessica Kingsley Publishers on 19 January 2017.

I don’t deny there are huge market forces which are tugging English dementia policy in a certain direction. Far from being ‘unfettered by the market’, the NHS and social care are crippled by the consequences of disastrous policy notably in the last twenty years. So, while the same power speaks lack of truth to others in power, and the same ‘approved’ people give the ‘approved’ narratives of life experience in ‘engagement’ for the Department of Health it is possibly unlikely anything drastically will change in England, despite the little acorns sown by Roy Lilley in #FabChangeDay.

If you’re looking for exceptional people who will voice the alternative view that ‘enough is enough’ look no further than Helen Rochford Brennan, who has taken up today a very significant position of influence.

Helen Rochford Brennan is from Tubbercurry in County Sligo. Helen spent many years working in the tourism and disability sectors and has also devoted tireless years to community activism, working at board level in several organisations. In July 2012, Helen was diagnosed with early onset Alzheimer’s disease. She is currently the Chair of the Irish Dementia Working Group, which is resourced by The Alzheimer Society of Ireland. Helen is now Chair of the European Dementia Working Group.

Helen’s appointment marks a significant endorsement of the prioritisation of disability rights in European dementia policy.

And Helen is in likewise exceptional company.

On 26 November 2015, it was reported that Kate Swaffer, CEO of Dementia Alliance International, was also recognised (one of many outstanding awards):

“Local disability champion, Kate Swaffer was among the 14 individuals and organisations recognised for their outstanding work at the 2015 National Disability Awards ceremony at Parliament House last night.

“I’d like to congratulate all the winners for their efforts to improve the lives of people with disability and in particular Kate Swaffer who won the Emerging Leader in Disability Awareness Award” said Minister Pyne.

“Ms Swaffer is the Chair and co-founder of Dementia Alliance International. Since her own diagnosis with
younger onset dementia she has advocated for the rights of people with dementia in Australia and around the world”.

Assistant Minister for Social Services, Alan Tudge presented the awards which recognise people and organisations for their commitment to achieving greater inclusion and accessibility for people with disability.”

For Kate Swaffer, “Being a dementia-friendly community is about being treated under the guidelines of the UN Convention on the Rights of Persons with Disabilities, and within the DisAbility Discrimination Acts around the world. Nothing should happen without the interest, inclusion and commitment of people with dementia.”

There is absolutely no doubt in my mind that this masterly and groundbreaking work from Dementia Alliance International, of getting others in the global community to recognise dementia as a disability, and thus worthy of disability rehabilitation, has totally changed the mood music.

Next week, the DEEP guide “Our Dementia, Our Rights” will be launched. This document has been authored by Philly Hare on behalf of the Dementia Policy Think Tank, a group was set up in 2016 by a number of people with a diagnosis of dementia who have aparticular interest in promoting rights and influencing policy issues. The group is a member of the UK wide DEEP network, which is facilitated by Innovations in Dementia.

Under the jurisdiction of the accompanying guidance to the Equality Act (2010), dementia is very clearly a disability, and this interestingly mandates a number of statutory rights. The DEEP document is a useful contribution, I feel, as it is written in an accessible way, to discuss how dementia is a disability, what rights then result, and how the rights affect communicating, decision making, use of public services, planning ahead, and many other aspects.

I’d like people very much to be able to know what these rights are, and why they’re important. That’s why I revised my innovative programme ‘Dementia Rights’ for enthusiastic people to give information sessions about dementia rights. The programme is totally different from Dementia Friends, and unsurprisingly in my view much better at empowering actual people with dementia and carers.

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Some people do truly stand out though a world of more-or-less mediocrity, in addition to Kate and Helen. Prof Peter Mittler CBE, human rights advisor to Dementia Alliance international, attended the session for “Persons with Disabilities and Human Diversity – Social Forum 2016”. The theme of this meeting, strongly endorsed by Mittler was, “Disability is part of everyday experience and part of human diversity.”

The background to this is as follows. The United Nations 2016-2030 Sustainable Development Goals were launched with a commitment to “Leave No One Behind”. The most recent revision of the CBR Training Manuals was co-written with Disabled Persons’ Organisations and draws on United Nations Convention of Rights for People with Disabilities (UNCRPD) Principles and Articles to inform policy and practice. It would clearly be a problem if WHO are not intending to include people with dementia as part of the UN CRPD – and in my view would certainly offend the PANEL principles of human rights based approaches.

PANEL

 

I wholeheartedly agree with Mittler that there needs to be more synergy between UNCRPD and goals of the sustainable development goals. We need to know something about the quality of life of people with dementia and caregivers – this requires  international cooperation, and could be operationalised as a corollary measure to the “cognitive footprint” of Rossor and Knapp.

And all of this does have direct relevance to whether England and Wales are “in” or “out” when it comes to the use of the UNCRPD.

The UN Disability Committee is expected to examine the UK’s compliance with the Convention in 2016. Many organisations and individuals have already started to produce their own analysis of how well the Convention rights are being put into practice.

The Dementia Alliance International had argued that, until recently, neither persons with dementia nor national dementia societies have used their right of access to CRPD to which they are legally entitled in the characterisation of disability in Article 1.

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and active participation in society on an equal basis with others”

It is against this background that DAI Chair and CEO Ms Kate Swaffer had indeed included ‘Access to CRPD’ as one of its demands at the WHO First Ministerial Conference on Dementia in March 2015.

But it is worth noting that dementia is in fact mentioned in the “UK Initial Report On the UN Convention on the Rights of Persons with Disabilities” from the Office for Disability Issues 2011

“268. The UK is committed to changing negative attitudes towards disabled people within the workforce and in the delivery of services in the health sector. For example, the Dementia Strategy addresses the need for the public and health professionals to develop better awareness and understanding of dementia.”(p.80)

The UK clearly needs to step up to the plate. It is well known that the Prime Minister’s Dementia Challenge largely ignored expertise from the social care profession, leading to a highly imbalanced English policy actively promoted from certain people who benefited from it to an extreme.

As the Guardian wrote:

“The findings of a UN inquiry investigating alleged violations of disabled people’s human rights in the UK as a result of welfare reforms will not be published for two years, the Guardian has learned.

The UN launched its confidential investigation at aclosed hearing in London on 14 October, at which UN officials took evidence on the effects of welfare cuts from UK campaigners, lawyers and disability service users.

The inquiry by the UN Committee on the Rights of Persons with Disabilities (CRPD) marks the the first time a country has been investigated by the committee over human rights breaches.”

There is no doubt that disabled people’s rights threatened by government cuts. The welfare benefits system continues to wreak havoc on people striving for independent living (see Wendy Mitchell’s recent blogpost).

And in real life outside conferences, the harsh reality is well known. The King’s Fund in relation to their recent report “Social care for older people: home truths” commenting on their report from King’s Fund and the Nuffield Trust wrote recently:

“Six consecutive years of cuts to local authority budgets, rising demand for services and shortages of staff have left the social care system increasingly unable to meet the needs of the older people who depend on it. The report finds that this is placing an unacceptable burden on unpaid carers and is leaving rising numbers of older people who have difficulty with the basic activities of daily living – such as washing, dressing and getting out of bed – without any support at all.

The report highlights evidence that reductions in fees paid by local authorities and other cost pressures such as the National Living Wage are squeezing the incomes of residential and home care providers. It warns that an increasing number are likely to leave the market or go out of business as a result, potentially leaving older people without the care they depend on.

The squeeze on the budgets of care providers is also prompting some providers in affluent areas to step back from providing care for people funded by local authorities, leaving those who depend on council funding reliant on an increasingly threadbare safety net. At the same time, more people are having to pay for their own care as a result of cuts to local authority services.”

And the NHS is faring no better, with disastrous performance in A&E waiting times, catastrophic delayed discharges from hospital, and massive rota gaps in service provision.

I believe it would be catastrophic to assume a stance of complacency of the trouble ahead in dementia care, but you should indeed celebrate the best (as in the forthcoming #UKDC2016 in Brighton, programme here).

Delegates in Brighton would be foolish to miss on Wednesday 2 November 09:40-11:30 the plenary session in the Main Hall, chaired by Jeremy Hughes, Chief Executive, Alzheimer’s Society, with key speaker David Mowat MP, Parliamentary Under Secretary of State for Care.

A message of ‘you never had it so good’ would be not only entirely appropriate, but also disingenuously untruthful.

 

@dr_shibley

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Could the ‘gig economy’ be the ultimate salvation of a troubled residential care sector?

For Des Kelly OBE, the outlook was bleak.

“Above all, Kelly is dismayed at social care’s continuing funding crisis and he envisages no early solution. He says that he “can’t see” the government making good its promise to implement in 2020 the postponed Dilnot funding reforms, and he fears that care providers will be left with no alternative but to continue to squeeze people who pay for their own care to compensate for the shrinking value fees paid by councils and the NHS.”

And this is not simply ‘moaning’ of the highest magnitude.

The distinguished King’s Fund opined recently as follows.

“The picture that emerges is of social care providers under pressure, struggling to retain staff, maintain quality and stay in business; local authorities making unenviable choices about where to make reductions; a complex set of causes of delays in discharging older people from hospital; and the voluntary sector keeping services going even when funding was curtailed.”

And the headlines aren’t great.

care home crisis

But there are reasons to be cheerful.

Uber is  doing very well.

Uber Technologies Inc. is an American worldwide online transportation network company headquartered in San Francisco, California. It develops, markets and operates the Uber mobile “app”, which allows consumers with smartphones to submit a trip request, which the software program then automatically sends to the Uber driver nearest to the consumer, alerting the driver to the location of the customer. Uber drivers use their own personal cars

Its financial success has been recently confirmed after new accounts revealed the taxi technology’s drivers billed more than £100m in UK fares last year, leading to a doubling of profits at its parent company.

Uber London, the taxi app’s UK holding company, recorded a profit before tax of £1.83m, up 105% on the previous year, on the back of revenue that more than doubled.

Airbnb is also doing well.

Airbnb is a peer-to-peer online marketplace and homestay network that enables people to list or rent short-term lodging in residential properties, with the cost of such accommodation set by the property owner. The company receives percentage service fees from both guests and hosts in conjunction with every booking.

Hard data on the financials of Airbnb are difficult to obtain, but it has been reported in April 2016 that a new estimate by US investment bank Cowen & Company predicts that the bookings site will process $12.3 billion in reservations this year, up from an estimated $7.2 billion in 2015.

The leading businesses that are advancing the concept of the “sharing economy” or “gig economy” are not simply easily dismissed as ‘insurgents’. The size and scale of Uber, Airbnb and several other firms now rival, or even surpass, those of some of the world’s largest businesses in transportation, hospitality and other sectors. The United States Department of Commerce are exploring now this important sector.

They have explored a definition of “digital matching firms” that exhibit the following characteristics:

  1. They use information technology (IT systems), typically available via web-based platforms, such as mobile “apps” on Internet- enabled devices, to facilitate peer-to-peer transactions.
  2. They rely on user-based rating systems for quality control, ensuring a level of trust between consumers and service providers who have not previously met.
  3. They offer the workers who provide services via digital matching platforms flexibility in deciding their typical working hours.
  4. To the extent that tools and assets are necessary to provide a service, digital matching firms rely on the workers using their own.

A “disruptive innovation” is just a strategy to help entrants dislodge long-time incumbents and it has been argued that Uber is not disruptive to taxis is that it does not meet the classic tests of a disruptive innovation because it did not originate in a low-end or new-market foothold. However, it has been noted that, before taking on taxis, Uber started in the black limousine car market. There appears to be more widespread agreement that Uber is disruptive relative to black limousine car services.

It is still uncertain the extent to which regulators can dent the profitability of such services. For example this week in England, the judiciary ruled that Uber drivers are not self-employed and should be paid the “national living wage”, a UK employment court has ruled in a landmark case which could affect tens of thousands of workers in the gig economy.

This means that the ride-hailing app could now be open to claims from all of its 40,000 drivers in the UK, who are currently not entitled to holiday pay, pensions or other workers’ rights. Uber of course immediately said it would appeal against the ruling. The pesky thing about employees in any sector is that they represent an important source of fixed direct costs to the budget sheet, and they can be subject to employment rights according to jurisdiction, e.g. sick pay, maximum number of working hours, minimum wage.

Can there be a ‘disruptive’ approach to the care home sector? Or, rather, is there is a need for a ‘disruptive’ approach to the care sector?

Disruptive care might involve ‘flexible’ staff attending to people in ‘flexible’ residences.

One could argue ‘yes’ in relation to tests proposed in an article in Forbes.

1. Does it target non-consumers or people who are overserved by an incumbent’s existing offering in a market?

Yes, a new disruptor could offer a care service to meet a huge demand in a market which can excruciatingly expensive for care home ‘customers’.

2. Is the offering not as good as an incumbent’s existing offering as judged by historical measures of performance?

The answer to this question is unfortunately tempered since it is known that the standard of care homes is not known to be ubiquitously good.

3. Is the innovation simpler to use, more convenient, or more affordable than the incumbent’s existing offering?

A disruptor to the care home might offer living in a home with ‘flexible’ care staff recruited according to complexity of need, such as whether a person had complex health and social needs or not. It might be considered advantageous to not have residents rooted to a particular physical building such as a ‘care home’. But there are some very major arguments potentially against this. Firstly, it would be anticipated that more inexpensive staff did not necessarily mean less skilled staff (for example without appropriate training and who were not subject themselves to any form of accountability of regulation). Secondly, the social aspects of residents meeting new people is thought to be a society advantage of care homes, mitigating against loneliness or lack of social inclusion which might accompany a diagnosis of dementia, for example. The major threat is of course to quality of care, and this could be particularly significant to patient groups who cognitively can become very disoriented through rapid turnover of the environment including staff.

4. Does the offering have a technology enabler that can carry its value proposition around simplicity, convenience, or affordability upmarket and allow it to improve?

Taking the parallels with other ‘disruptors’, there would be financial savings on eliminating the need for middle managers in healthcare, and to get rid of the fixed costs for upkeep of buildings (which could be substantial in certain metropolitan areas.) A ‘disruptor’ might, furthermore, be able to scale its offering in a much more pragmatic way that a care home with a certain building, certain number of residents, and certain number of permanent staff.

5. Is the technology paired with a business model innovation that allows it to be sustainable with its new value proposition?

It is argued that, “central to the Uber question is whether its low pricing has been used just as a marketing technique to enable it to acquire new customers or whether it is in fact housed in a business model that allows it to sustainably offer its services at lower cost. Without access to Uber’s financials, we don’t know for sure..” In England, if the business model can be profitable in the long run, it might be that private equity is able to kick start it in the form of funding appropriate social enterprises through instruments such as social value impact bonds.

6. Are existing providers motivated to ignore the new innovation and not threatened at the outset?

Disruptive innovation is a theory of competition with game theory at its heart; it posits that if you take a “disruptive” action, then the incumbents will be motivated to ignore or flea from you initially—and when they do fight, it will be largely futile.” It is indeed likely that with mobile staff and mobile residences (as in Airbnb) the old incumbents of the care sector will ignore the risky care disruptors? But it is worth noting social trends on this – according to many surveys, many older people would prefer to live at home rather than in residential care. However, it is worth noting that there are many good reasons for some people residential care is ‘better’ than living (often alone) at home. But on the other hand, the same surveys for England at least prefer a properly funded health and social care system from general taxation, and further marketisation of the NHS and social care systems, which have been problematic for England, are likely to go down like a lead balloon unless done surreptitiously and in stealth.

I am ideologically a ‘statist’, and the risk of liberalising this aspect of social care would be to drive down standards for the bottom line, for a race to the bottom, where nobody is accountable (for example for the obviously criminal behaviour by some Uber taxi drivers). For an issue such as social care for some of our most vulnerable people in society, for some it will not be a price worth paying. For others, it remains in the post-Brexit world an “opportunity”.

But please don’t shoot the messenger.

 

@dr_shibley

 

 

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A serenity prayer for my work in dementia

I was asking a very wise and experienced senior physician how my work in dementia was really getting me down, but in terms of how competitive I’d begun to not being invited to any conferences or being cited.

The most parsimonious reason, actually, is that my peers think my work is truly shit.

And that very wise person reminded me of ‘the serenity prayer’.

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I am fortunate to be living with my mum, having survived a six week coma with acute bacterial meningitis in 2007. Whilst that event rendered my disabled, I have lived with full contentment in recovery, being regulated by both the law and medical professions.

I have been in recovery for nine years. Without it, I’d be not alive. I take each day as it comes.

Thank you very much to that wise person – you know who you are.

 

Dr Shibley Rahman

 

 

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Dementia care and support in a hypernormalised world, creating a virtual unreality

In March 2016, the Secretary of State for Health said, “A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia”.

Of course, where fantasy begins and reality stops for Jeremy Hunt is a matter of conjecture, given the wilful blindness to the catastrophic A&E waiting times and delayed discharge performance.

On this theme,  “HyperNormalisation” by Adam Curtis has just been aired on the BBC iPlayer. It tells an epic narrative spanning 40 years, with an extraordinary cast of characters. They include the Assad dynasty, Donald Trump, Henry Kissinger, President Putin, intelligent machines, Japanese gangsters, suicide bombers and Colonel Gafaffi. All these stories are woven together to show how today’s fake and hollow world was created. Rather than face up to the real complexities of the world, Curtis articulates that they instead constructed a simpler version of the world in order to hang onto power.

Clinicians are very keen to label persons with dementia as ‘abnormal’ in terms of cognitive or behaviour, when often these decisions are perjorative and based on an arbitrary cut-off point of what is normal. With people with dementia being seen in hospitals described as ‘overstretched, underfunded and understaffed‘ by the Royal College of Physicians recently, with savage social care cuts as described clearly by the King’s Fund, it is hard to see where precisely the claim for ‘the best country to have dementia in’ can come from? Cited in the Hypernormalisation film is “Roadside Picnic” (Пикник на обочине) is a short science fiction novel written by Arkady and Boris Strugatsky in 1971. Roadside Picnic is a work of fiction featuring zones exhibit strange and dangerous phenomena not understood by humans, and contain artifacts with inexplicable, seemingly supernatural properties.

For clinically diagnosed persons with dementia, performance at some stage in cognitive domains, with supportive evidence say from neuroimaging, EEG, CSF or blood tests, the paradox exists for people with dementia having difficulty in ‘thinking faster’ are caught up in a hyper-fast hyper-connected world.  The Internet of things (“IoT”) is the trendy internetworking of physical devices, vehicles (also referred to as “connected devices” and “smart devices”), buildings and other items—embedded with electronics, software, sensors, actuators, and network connectivity that enable these objects to collect and exchange data. The IoT allows objects to be sensed and/or controlled remotely across existing network infrastructure, creating opportunities for more direct integration of the physical world into computer-based systems, and resulting in improved efficiency, accuracy and economic benefit. This can of course make the blurring between fantasy and reality even more difficult.

Care or nursing homes, hospitals or hospices, all seem to suffer a dire shortage of trained staff, and local problems might exacerbate this situation in future.  And the search is on for suitable companions, including a pet. But sometimes animals are often not allowed in nursing homes or day care centres, due to the risk of injury to patients, staff or visitors, the possibility of allergic reactions, and the potential nuisance of cleaning up after the animals.

Unsurprisingly, robots might be the next big thing in dementia care and support. The term ‘robot’ was first used in 1920 by the Czech playwright, Capek in a play entitled Rossum’s Universal Robots. Here robots turned against their human masters, a plot which may partially explain the tension between fascination and distrust of robots.

Change and even progress may be happening fast. In 2013, MIT engineering professor John Leonard told the MIT Technology Review that “robots simply replacing humans” would not happen in his lifetime. Today, Google’s autonomous cars have traveled more than 1m miles on public streets, and self-driving taxis seem all but inevitable. Domino’s Australia have even unveiled a pizza delivery robot in Brisbane, and Amazon are talking about making deliveries by drone.

In the last few years, many projects have addressed the use of robots for supporting elderly people aging in place, including people with dementia.  With the increasing incidence of dementia and the societal demand for cost reduction in care in general, a need grows for innovative care concepts to sustain and preferably improve the quality of care.

Socially Assistive Robots (SAR) are an emerging form of assistive technology encompassing all robotic systems capable of providing assistance to the user by means of social interaction.

SAR can deliver help at different levels:

(a) supporting user’s cognitive or functional abilities (e.g., task reminding and monitoring);

(b) offering the user opportunities to enhance social participation and psychological well-being (e.g., communication and social applications, companionship);

(c) providing remote and continuous monitoring of user’s health status (e.g., blood pressure or fall detection sensors); and

(d) coaching the user to facilitate the promotion of healthy behavior and achievement of health-related goals (e.g., improving nutrition. physical activity).

The therapeutic use of SAR in the context of dementia care has received increasing attention over the last decade as illustrated by a growing body of research). Most of these studies have focused on PARO, a therapeutic animal-like robot modeled on a baby harp seal, mainly employed to encourage social behaviour and/or alleviate stress among persons with dementia. It has five types of sensors: tactile, light, audio, temperature, and posture, with which it can perceive people and its environment. It can respond to stimuli, perceived by its sensors, by making noise, moving its eyes, head, and flippers.

Several intervention trials demonstrated promising effects of participating in PARO therapy in increasing motivation, improving mood, reducing stress, and increasing social communication in elderly people.

There’s also a need to consider the context of the usage of an assistive robot which takes into account the presence of other human beings. This may be much more challenging: functionalities of robots should be designed by taking into account various social contexts, which include, for example, the possibility of a robot to assist the caregiver and not directly the person with dementia?

Caring for the carers is a huge aim of person-centred dementia care worldwide. Results over many years have indicated that due to significantly higher levels of care provision in recent years, spouses experience differentially more depressive symptoms, physical and financial burden, and lower levels of psychological well-being.

There is also remarkably little research how the views of persons with cognitive impairment and caregivers converge or diverge regarding the acceptance of SAR. A more comprehensive approach should include both groups’ perspectives to better understand technology acceptance and usage intention of SAR in the general context of dementia care.

Part of the cognitive footprint of people with dementia can be marked attentional problems, for example manifest as impulsivity, disinhibition or distractability. The symptoms of people with behavioural variant of frontotemporal dementia (“bvFTD”) are most often a change in personality and behaviour. With the application of “virtual reality”, it might now be possible to elicit and examine the patient’s actual interpersonal behavior and responses to avatars while manipulating the social-emotional environment. The immersion of bvFTD patients in a virtual environment also allows the exploration of potential rehabilitation strategies for dealing with their social-emotional changes.

In a parallel universe, carers also might give themselves avatars and be involved in peer support groups known to be effectively reduce stress from caring for someone with dementia. While online groups have been shown to be helpful, submissions to a message board (vs. live conversation) can feel impersonal. Having avatars can have its advantages: it allows the carers to join the group even when they have a busy day, and may not have had a chance to put on their best T shirt in the way they would prefer for another video viewer.

A problem is, however, that in virtual  environments, we can be fooled into thinking that we are our avatars. People in virtual environments tend to behave in ways that are expected of their avatars. For example, if you embody a tall avatar, you’ll negotiate more aggressively than if you were given a shorter body.

As the world moves towards a future based on virtual reality, artificial intelligence, and machine learning, we have to think about where to draw lines to mark the distinction between reality and fantasy, what kinds of situations are problematic, and how to refashion the rules for a digital world. There are many legal and ethical issues involved.

The future is here?

Hyperconnectivity is the increasing digital interconnection of people – and things – anytime and anywhere. By 2020 there will be 50 billion networked devices. This level of connectivity will have profound social, political and economic consequences, and increasingly form part of our everyday lives, from the cars we drive to the medicines we take. All of our institutions will have to make increasingly thoughtful trade-offs between the value inherent in a hyperconnected world and the risk of operational disruption, intellectual property loss, public embarrassment, and fraud that cyberattacks create.

Concerns have been raised about a possible relationship between virtual reality and desensitisation. Desensitisation means that the person is no longer affected by extreme acts of behaviour such as violence and fails to show empathy or compassion as a result.

Another issue related to this is ‘cyber-addiction’. There are people who become addicted to virtual reality games and as a consequence, start to blur the boundary between real and virtual life.

But all of this might be Sir Lynton Crosby’s “dead cat strategy”, the man behind David Cameron’s ‘successful’ 2015 general election campaign.

Adam Bienkov describes the strategy thus:

“”Let us suppose you are losing an argument,” Boris Johnson wrote earlier this year.

“The facts are overwhelmingly against you, and the more people focus on the reality the worse it is for you and your case.

“Your best bet in these circumstances is to perform a manoeuvre that a great campaigner describes as ‘throwing a dead cat on the table, mate’.”

Going on to describe the manoeuvre he explains: “The key point, says my Australian friend, is that everyone will shout ‘Jeez, mate, there’s a dead cat on the table!’; in other words they will be talking about the dead cat, the thing you want them to talk about, and they will not be talking about the issue that has been causing you so much grief.””

This new hyper normalised and hyper connected world may be the best thing to happen to person-centred integrated care in dementia ever.

Or it might be a dead cat simply presenting a virtual unreality.

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A human-rights based approach is key to person-centred integrated care in dementia

Whilst integrated person-centred care is becoming established as being good practice in dementia, it has however been criticised for being vague and difficult to research if it were not for tools such as dementia-care mapping.  But does the application of a Human Rights Based Approach to health care lead to material improvements in the care and well-being of people with dementia in a care home setting?

The Department of Health (2009) first English dementia strategy entitled ‘Living well with dementia‘ lays down a clear rationale for raising awareness in dementia key to countering stigma associated with dementia.  But the same policy document witnessed frustration at the need to educate the workforce too.

A consensus has now emerged that awareness-raising campaigns should include education on human rights, distinctly lacking in “Dementia Friends”. Campaigns might also, discuss dilemmas related to ethical issues which arise when providing dementia care, and help to establish a more positive image of living with dementia and carers.

It has been widely recognised that people living with dementia are frequently denied their human rights both in the community and in care homes, reflecting a historical perception that traditionally we as a society have not treated people with dementia fairly.

The most high-profile human rights abuses of people with dementia in recent years have taken place in healthcare settings, and so there is an urgent and compelling need to change the culture of many healthcare services and to equip women and men with dementia with the knowledge and skills to claim their rights as citizens.

There is quite clearly a need to translate the concepts in a “Human Rights Based Approach” into practical strategies to facilitate the everyday decision making of staff. In other words to make choices guided by values guided by pragmatic elements such as proportionality fit in with other frameworks, proactive strategies and balancing rights and risks.

Prof Sube Banerjee who has written the main foreword to my third book “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” was central in advancing clear commitment to reducing the prescription of antipsychotic medication to people with dementia (Department of Health, 2009).

Public attitudes towards human rights in the UK have, for some time, been confused and contradictory,  to some extent resulting from misleading and inaccurate mainstream media coverage, as well as underlying political motives. The Human Rights Act, 1998, in particular, has been under consistent attack from certain newspapers

In all jurisdictions, human rights are universal in that all people in the world are entitled to them, and these rights are inherent to the dignity of every human. Specifically, under the Human Rights Act 1998, public authorities – including NHS organisations – have a legal obligation to respect and protect human rights. This requires them not only to refrain from breaching human rights (‘negative’ obligations) but also, in some circumstances, to take proactive steps to protect people from human rights abuses – even if the harm is caused by private individuals rather than directly by the authority (so called ‘positive’ obligations).

For example, this means that if there is evidence that a patient is being abused by relatives, NHS organisations have a positive obligation to investigate this and, where necessary, take steps to prevent it. Of course, this right can only be enforced by people who are aware of it.

Often human rights have been marginalised or ignored, and advocacy groups have a critical rôle to play in promoting rights. However, advocacy groups have been often criticised for advising people of the ‘moral rights’ they should have, as opposed to the ‘legal rights’ they do have, and this might reflect a lack of ease with the law. And even when groups do successfully advocate for change, there is no actual shift of power and consequently, advocacy groups may be limited in challenging society’s values, labelling and stigmatisation.

But the power of advocacy groups lies in their membership and the ability to act independently from service providers and professionals is a formidable one, but this same positioning may also mean groups might lack enough knowledge of the intricacies of health and social care systems.

The fertile dynamic promotion of rights at a local level also is felt to be crucial to the functioning of local democracy, which is somewhat distinct from a dry, academic discussion of international legal instruments. The importance of citizenship, or the ‘right to belong to some kind of organized community’, as a ‘right to have rights’ (Arendt 1958) was highlighted in Arendt’s (1958) writing on the plight stateless persons in pre-, inter- and post-World War Europe. Arendt highlighted the vulnerable situation of those displaced from one country and accorded no citizenship rights in their new ‘home’.

The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it. Whilst not solely about human rights, this NHS Constitution establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively.

Dementia is legally a disability, and the arguments as to whether people with dementia wish to consider themselves as ‘disabled’ (for fear of adding to stigmatisation) are not trivial. People with disabilities are the world’s largest growing minority, yet until very recently they were invisible in international human rights law. The European Court of Human Rights only made its first ever finding of disability discrimination in 2009 in Glor v Switzerland (2009).

Traditionally, people with dementia have borne the brunt of numerous whammies, including prejudice about cognitive disability and ageism (although dementia is not an inevitable part of ageing). This has led to care practices that undermine the humanity and personhood of an individual with dementia as indeed the late great Prof Tom Kitwood espoused in his seminal work on personhood.

People with dementia need positive rights; this can help with communication and decision making to help them to exercise autonomy.

It is also worth noting that they have rights which need protecting in relation to other people’s rights. For example, in the debate over  physical restraint, how much restraint is acceptable without infringing people’s human rights such as even the evaluation of care home staff performance?

Video surveillance might protect against abuse in care home, and yet residents with dementia often report that they do not want to be watched and value their freedom, privacy and sense of “self”.

From a human rights perspective, might the protection of public health potentially also be a human right, be it individual or collective in nature? Seen in this light, the ‘right to health’ can be a collective claim reflecting ‘public health’ and going against the interests of, for example, the tobacco, food and alcohol industry.

But it is not always easy to see the “competing right“. For example, all organisations that provide NHS or publicly funded adult social care must conform to the Accessible Information Standard (England only, though the expectation is there in Scotland and Wales). This includes NHS Trusts and Foundation Trusts, GP practices and local councils. But what can possibly be the case for the Government’s right not to produce accessible information? Cost?

One wonders, whilst activism from groups of persons with dementia and carers is still relatively young, whether there has been adequate leadership and guidance to providers of health and residential care on the implications of the Human Rights Act?

There is still, I feel, a need for better staff training in human rights principles and their inclusion in health professionals’ qualifications as well as a duty to ensure that junior doctors in training have adequate legal protection for safe whistleblowing.

We also need much stronger “meaningful rights” for protection against eviction for care home residents, and more robust complaints procedures generally.

It is however somewhat unclear why a citizenship lens has not made more of an impact on dementia practice and research. The idea that people with dementia have rights has long been recognised and the need to treat a person with dementia as an equal has been voiced through a personhood movement.

Citizenship has traditionally been associated with the promotion of civil, political and social rights particularly in relation to the welfare state. Although the idea of citizenship arguably originated in Western Europe, the notion that all persons should enjoy certain rights and freedoms is firmly rooted in political theory and philosophy. It is perhaps symptomatic of the degree of cultural oppression of people with dementia and carers that there has been such a slow uptake in people claiming their rights.

I think it would be helpful for human rights to be back in pole position on the agenda of person-centred integrated care in dementia, and it is reassuring that much valuable groundwork has already been done. The Human Rights in Healthcare Programme was established in England in 2005 as part of a government-led initiative to embed human rights into public services and develop a culture of respect for human rights. The purpose of the Programme—a collaboration between the Department of Health, the British
Institute of Human Rights, and, by 2012, eight participating National Health Service (NHS) trusts—was “to assist NHS Trusts to use a human rights based approach (HRBA) to place human rights at the heart of healthcare.”

Arguably, a Human Rights Based Approach offers a more robust framework encompassing many of the person centred principles but take it a step further as it is law. A Human Rights Based Approach helps us to make difficult decisions because it provides a decision making framework, about legality, whether decisions are necessary, and whether they are proportionate.

Consider, for example, how the use of blanket restrictions such as locked doors, lack of access to outdoor space or refreshments can have a negative impact on how people behave, their care and recovery. They are inconsistent with a human rights-based approach. Providers should ensure that they abide by the Human Rights Act, and where possible do not have blanket restrictions in place. Where these are considered necessary, providers should have a clear policy in place and ensure that the reasons are communicated and justi ed to people who use services, family members and carers. But likewise providers may be challenged to justify the use of such restrictions under the Human Rights Act 1998.

Incidents of abusive or neglectful care in care homes and hospitals (Winterbourne View, Orchid View and mid-Staffordshire NHS Trust) have rightly prompted a debate about the use of surveillance cameras to deter and detect poor care, but irrespective of such disasters there is a sensitive debate with implications for the rights of patients and service users, and for the workforce. An over-emphasis on the right to rights might detract attention towards symptoms of poor care provision away from the causes such as underfunding or toxic cultures.

So is the upholding of rights a ‘means to an end’?

In philosophy, the term means to an end refers to any action (the means) carried out for the sole purpose of achieving something else (an end). But I don’t think the answer is as simple as this – the aimias to use human rights as both an end and a means—in other words, as a source of legal standards and obligations as well as one of principles and practical methods that determine how those standards and obligations are to be achieved.

Human rights innately include economic, social, civil, political and cultural rights and that these rights are equally important and inextricably linked. Everyone is entitled to minimum guarantees simply because of their humanity – that there is the ‘right to have rights’.

And do I think this is just confined to health and social care systems? Definitely not. Whatever your views about the term ‘dementia friendly communities’, various central planks of human rights based approaches are fundamental. Related to participation is the right of people living with dementia and carers to have equal access to community services and facilities. This includes access to adequate food, water, clothing, education, health, public buildings, transport, housing schemes, information and communication.

Accessibility also means that people living with dementia and their carers should be provided with accessible information and the support they require to empower them to exercise their right to participate in decisions that affect them. This includes from health and social care professionals and practitioners too.

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Dementia Society best campaigner of the year 2016 awarded to ten people equally

The following were shortlisted for the best campaigner with dementia for 2016 for the Dementia Society.

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After much consideration, the judging panel has decided to make this award to all campaigners equally.  The finalists will therefore all share this award, as there was nothing to differentiate between them.

The judging panel wanted to commend them on how all the finalists have formed an unique close community in raising awareness about the dementias sometimes having a marked impact on national and international policy, and wanted to mention especially their commitment to a strong sense of peer support and encouragement. Finally, the panel wishes to point out that the list of finalists for this year was not meant to be a complete representation of the brilliant work done by all UK campaigners in the dementias.

24 October 2016

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“Care homes are care homes – and we’re determined to make a success of them”

Not all the world is in financial distress.

The good news is – McDonald’s third-quarter revenue has topped analysts’ estimates, helped by international markets like Britain and Canada, as well as the expansion of its all-day breakfast menu in the US.

When it comes to English politics, you can be pretty certain that social care will be shunted to be bottom of the pile. Occasionally, privatisation of the NHS surfaces to the top.

Integrated care is a Pandora’s box. Once you begin to look into it, you get a sense of the parts of the health and social care systems being intimately inter-connected with one another. While it might be a political priority ‘to make a success out of Brexit’, there seems to be less enthusiasm about sorting out intermediate care, GP access or delayed transfers of care/discharges.

I feel that the various models of care can get bewildering, but the idea of a ‘person-centred co-ordinated care’ definition that focuses on the individual as the organising principle for services is useful to me. I find less interesting all the minute details about the operations and processes needed to make integration work.

Care homes should indeed be what ‘it says on the tin’ – i.e. pass the Ronseal test, i.e. homes where high quality care takes place.

Becoming a care home resident is meant to be a positive choice, and not symbolic of failure by anyone. It could be a time to meet new people, and have someone help you with mealtimes, making you take your meds on time, doing your washing, for example, if you could benefit from the help.

Part of the aim of ‘opening up care homes’ was so that care homes were not adopting a prison or fortress mentality – and likewise residents aren’t to be expected to want to feel as if they’re in hospital. It’s not meant to be like living in a hôtel either – it’s your home.

Residents should be entitled to the best possible health care as part of a community of a care home as he or she could expect from being in his or her own home. But this is all part of the complicated web that has been weaved about ‘avoidable admissions’ – there clearly has been a knock on effect not just from swingeing cuts in social care, but reductions in ease of GP home visits or community nursing.

There are a number of things going wrong simultaneously, which are not just to do with the total spend on the NHS and social care (inadequate though they are). For example, we have payment systems that reward organisational activity rather than collective outcomes; regulation that focuses too heavily on organisational performance rather than system performance; and the lack of a single outcomes framework to promote joint accountability for integrated care. Promotion of wellbeing of residents in a care home, who like their genealogy tree, or like their cat v dog competitions, should be a valid outcome in itself, in the same way that staying out of hospital might be?

This evening I signed a petition that all dementia care should be free at the point of use. The rationale behind me signing this (“Frank’s Law”) is that I feel there should be no fundamental difference between your eligibility for funding streams in NHS and social care. And we know what the major issues are. The King’s Fund Barker Commission established that the case now for change, for a single point of commissioning of health and social care, is overwhelming. Given that the end point of dementia care should be examined for whether it is health or social care, which can be a somewhat arbitrary decision, it would be helpful if the collection of monies for health and social care were amalgamated at source. Promotion of private social insurance system might be political dynamite, but the discussion of social insurance systems across different jurisdictions is an important one. The care (and housing) sector are in desperate need of financial long term stability, which cannot all be left to market forces, and needs some national infrastructure State guidance.

The present day situation, however, is that commissioning is more fragmented than ever, at a time when the obligation must to integrate around the needs of an ageing population with a mixture of co-morbidities that truly defy service boundaries in a complex way. It would be easier to organise care around a group of providers who agree to take responsibility for providing all care for a given population for a defined period of time under a contractual arrangement with a commissioner. Providers are held accountable for achieving a set of pre-agreed quality outcomes within a given budget or expenditure target.

There are ways of rewiring the system better. Bundling payment for services that patients receive across a single episode of care is one way to encourage doctors, hospitals and other health care providers to work together to better coordinate care for patients, both when they are in the hospital and after they are discharged. Also, in the 2013 Spending Round, the government had announced a new pooled fund of £3.8 billion to try to encourage health and social care organisations to co-ordinate their services. This came to be called the Better Care Fund, and built on the government’s commitments in 2010 to pool some local funds for developing integrated services. Pooled budgets in some form are likely to continue to be important.

But merely bundling the payment is not enough. More needs to happen, including reductions in unnecessary care, reductions in readmissions, lower risk and complication rates for patients, and improved patient function and outcome, for example through the mapping of bundled care payments to a coherent system of valus-based commissioning.

Integrated care was not originally a major part of the coalition’s plans for NHS reform. Yet, as a result of its troubled passage from White Paper to law, Lansley’s diabolical Health and Social Care Act 2012 turbo boosted competition propping a legal framework where integration could be framed as uncompetitive. The Care Act 2014 also placed a duty on local authorities to promote the integration of care and support services with health services (and health-related services like housing) where this will benefit patients and quality of care.

There’s now a genuine concern about rushing the change. The speed of strategic change describes how fast firms are able to implement a new strategy. The resource management perspective suggests that firms need to orchestrate their resources to create new capabilities that are then used to implement strategies. But with Government borrowing still in turmoil, and limited funds to kickstart the ‘sustainability and transformation process’, the political will to drive enhancing health and wellbeing in care homes may be seriously lacking. The danger is if virtually all the money in the Sustainability and Transformation Fund is going into sustainability and deficit reduction there is not much to support transformation.

To enhance health and wellbeing in care homes, I believe in a new set of 5 Cs. Outcomes in the following could be used to produce a structured framework for promoting quality in an extended network involving hospitals, GPs and care homes in an extended network, and help to resolve the problem where commissioning is done from the perspective of the bottom line not quality of care.

(a) care planning

Care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future care. Frequent users of healthcare services are a vulnerable population, often socioeconomically disadvantaged, who can present multiple chronic conditions as well as mental health problems. Case management is a collaborative approach used in parallel with care planning to assess, plan, facilitate and coordinate care to meet patient and family health needs through communication and available resources with the intent to improve individual and health system outcomes.

(b) caring for health

There’s clearly a policy issue of who and how this will be provided, but the aim would be to deal with problems in physical health e.g. falls, fractures, infections, sensory impairment or mental health e.g. apathy, depression, of residents at the first available opportunity. This might be done through an extended GP service or some form of interface geriatrician, for example.

(c) caring for wellbeing

Wellbeing is a multi-faceted phenomenon, and could be promoted in a number of ways, e.g. gardening, arts, music, sporting memories sessions. But the trick is to focus on the person not the task; framing the narrative as “activity rounds” embues unnecessarily a biomedical twang on something which is supposed to be pleasurable and creative. “Dementia Care Mapping” will undoubtedly be invaluable tool for bridging service and research in this area.

(d) continuity of care

People tend to experience the worst care at the transitions of care. Ideally, people should have the best care wherever they are, e.g. at home, hospital, hospital or care home, and there should be smooth interoperability of key health and care information between different settings. At some point, a person might need to shift from living well with a condition to preparing for a good death with a terminal illness, and ideally everyone needs to be familiar with palliative care and end of life. Also, clearly delayed discharges and delayed transfers of care are factors which worsen social care outcomes and NHS outcomes of patient or user “experience”.

(e) care enablement

Whether through a medical intervention, social care or therapy services (physio, OT), for example, a critical feature of living with long term conditions is community based rehabilitation whereby people are given help to live life to the full. Such a package might be intensified, for example, when a person is discharged from hospital.

It’s clear that a long view is now needed.

There are many outstanding examples of care homes currently, but in universalising the best we should be aware that there are wider problems with the health and social care systems which need attention.

The care home sector itself is about to get squeezed through #Brexit and is already squeezed financially in a number of different ways, but somebody somewhere has to have the political will ‘determined to make a success of it’. A critical part to this is financial stability, staff recruitment and retention, and fostering links between caring and housing.

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Is it appropriate or desirable to campaign on dementia as a disability?

I’m going to consider now whether it is appropriate or desirable to campaign on disability from a background of domestic law as a resident in England. Comparable human rights laws of course exist in jurisdictions.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. The term ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed, and ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection.

There have been various definitions of dementia, but a conventional description of dementia is a condition with an underlying neurodegenerative basis affecting the brain causing a progressive decline in brain function, depending on the parts of the brain affected. The process is usually described as quite focal initially, say affecting aspects of language, short term learning and memory or higher order visual perception, but then affecting more global functions. That is a biological definition, but other definitions might emphasise aspects of personhood or human rights.

Let me lay my cards on the table. I live with chronic disability, long term conditions, in that I live with double vision all the time, following my meningitis in 2007. I also have a chronic ataxic gait following the same neurological insult. However, following my meningitis, I was able to complete both my Bachelor and Master of Law, my MBA and my pre-solicitor (regulated) legal training.

It’s worth considering in particular the terms, used in connection with consequences of a disability.

The words “impairment,” “disability,” and “handicap,” are often used interchangeably, but have very different meanings, however. The differences in meaning are important for understanding the effects of neurological injury on function.

The most commonly cited definitions are those provided by the World Health Organization (1980) in The International Classification of Impairments, Disabilities, and Handicaps:

Impairment is any loss or abnormality of psychological, physiological or anatomical structure or function.

Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap is a disadvantage for a given individual that limits or prevents the fulfillment of a role that is normal

As traditionally used, impairment refers to a problem with a structure or organ of the body; disability is a functional limitation with regard to a particular activity; and handicap refers to a disadvantage in filling a role in life relative to a peer group.

As a disabled person, to get maximal state benefits, you have to present with maximal handicap. In other words, you living a full life with your own scooter or handrail at home might mean you get less financial support every week. However, an assets based or strengths based approach views you in terms of what you can do, rather than what you can’t do.

There can be nothing more demoralising than you seeing your Doctor only to be informed what you cannot do compared to last year, or how your tests, for example neuroimaging or psychometry, have declined. It might be more fruitful for you to know that you still have the cognitive ability to drive a car, which might mean that you are able to lead a more independent life.

A problem with the disability prism is that it skews your thinking towards handicap and impairment, and this is of course no bad thing in that the Equality Act (2010) makes clear that for physical disability reasonable adjustments should be made by a body conducting a public function for you to do your work. It’s worth noting that the statutory drafting of this applies to physical disability, though the corollary would be for you to be given a ‘cognitive ramp’ at work (e.g. memory aid) cf how a wheelchair user would use a wheelchair ramp at work.

People’s attitudes to physical disability vary a lot. I was once in a wheelchair when learning how to walk (and talk) again after my meningitis. I remember vividly the experience of having to hail a cab in Central London with my late father, and how cabs ‘available to hire’ would shamelessly drive on.

Some people find using a wheelchair or hearing aid a sign of empowerment. Some find them stigmatising or embarrassing. Some people even prefer not to think of themselves as ‘disabled’ for similar reasons.

Some people have visible invisibilities; some have ‘invisible’ disabilities. Even I have found myself catching myself thinking ‘he looks perfectly ‘normal’ to me’ for someone leaving a disabled toilet when he might, say, be using intermittent self catheterisation as a person living with multiple sclerosis.

People also have profoundly individual reactions to impairment and handicap, and therefore disability. For example, rheumatoid arthritis affecting fine movements in your fingers at first might personally affect you a lot more if you’re a virtuoso violin player say compared to a plumber.

Framing the conversation in disability therefore tells you what ‘rights’ you might be entitled to on account of your disability at a legal level. Irrespective of whether or not you have legal rights on account of being disabled, we all have universal rights on account of being human which are inalienable i.e. human rights.

But framing the conversation in disability takes you away from a neurodiversity conversation. That is, between us as a population, we all have different levels of cognitive abilities to offer – i.e. we can’t all be good at maths or languages. If you’re having trouble with higher order visual processing, HR might advise you well to seek a job where this is not such a prominent requirement.

It might be useful to campaign on dementia as a disability, in that this might give you a seat at a table in plush international conferences, and might enhance the status of Big Charity. But above all there is a moral imperative to ensure that what you’re campaigning on is of direct relevance to a person down the high street, proverbially. In other words, your nan with dementia in a care home being treated to abuse might be better off being protected under the Care Quality Commission and local legislation, rather than the United Nations Convention for Rights for People with Disabilities, an instrument which whilst adopting a human rights based approach does not actually specify dementia explicitly.

On the other hand, being involved in the disability community might give you further opportunity to attend meetings where you can shape policy for inclusion at a local level. This is of course no bad thing with ‘dementia friendly communities’ – dementia rarely travels alone, so any physical restriction for a person living with dementia might be a further reason why a person does not utilise community services.

Framing dementia as a disability has another ‘bonus’ in that it gets people away from a purely biomedical model of disability, which as we know has had limited success in cures or symptomatic treatments. Hope is much valued as a currency for people living with dementia or disability, howeverso defined, and community based rehabilitation, not just in physiotherapy or OT, but also in social inclusion, is a desirable entitlement in global health policy which I feel should tailored at a local level (so called “glocalisation“).

You are probably inclined to think at this point of the discussion “meh” – and with good reason. Much of the discussion pivots on what the local definitions are of dementia and disability to you, and how it impacts on you and yours. And not everything which is a ‘right’ is enshrined in law; and your right to do something might impact in complement in relation to somebody else’s right. So ‘it’s complicated’, but in my opinion worth thinking about.

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No need for ‘a seat at the table’. Why I don’t consider myself ‘simply an academic’ in dementia

It’s a pity that this has to be said, but I don’t consider myself ‘simply’ an academic in dementia. Ironically, the people who take to Twitter to rail against ‘silos’ think of me as only capable of being an ‘academic’, a term often surreptitiously used as a subtle form of abuse, especially when accompanied by the meme ‘keeping it real’ in referring to others’ “more glorious” work.

But doing academic work is intensely rewarding.

Prof Claire Surr in fact put her finger on it in a single tweet to me recently when she conveyed the heart and soul of “people like us” put into our work.

As it happens, there is a close sense of community we all feel in academic work, not always summed up in the hashtag #whywedoresearch. I am strictly speaking an academic physician, but it is not commonly know I am a family caregiver of someone very close to me for someone living with dementia. Barbara Hodgkinson (@butterflyscheme) got this at once when I explained this to her on the phone the other day. I don’t as such flaunt my “expert by experience” credentials for the sake of being a speaker at a conference. I have better things to do.

People who know me very closely, like Chris Roberts, Jayne Goodrick and of course Kate Swaffer, know that it’s not at all positioning about me being some great “expert” in something. You see, I died once in 2007 due to meningitis, and then spent six weeks in a coma. It’s why I believe passionately that anything can happen to anyone at any time. People’s lives interests me, and I still remember Prof Tim Cox, chair of clinical medicine at the University of Cambridge, saying to a packed lecture theatre of clinical medical freshers in Addenbrooke’s in 1997 – including me – that it is an enormous privilege being allowed into people’s lives. I have a zillion regrets, but not paying close enough attention to this is one of them.

I wonder whether it’s possible to save dementia care one pledge at a time in the way the Liberal Democrats tried to save politics one post office at a time. But I think people and institutions who are too close to underperforming ‘leaders’, so much so that they are in capable of criticising them, for gratitude of previous gongs perhaps, are doing people living with dementia and carers a huge disservice?

“Speaking truth to power” is important – and it has become a popular way to describe taking a stand. Although the origin of the phrase is commonly ascribed to a 1955 book advocating against the Cold War, its appears to have been coined earlier by civil rights leader Bayard Rustin [1].

Secretary of State for Health, Jeremy Hunt, once said:

‘A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia.’  [2]

“Fear and heartache” sounds like a typical shock doctrine, but it is true the diagnosis of dementia can bring some heartache, and dementia is the most feared condition in adulthood – and the aspiration of wanting people to live better with dementia is indeed a reasonable one.

But an essential part of authentic leadership these days must be telling the truth wherever possible. In contrast, for example,  NHS Providers chief executive Chris Hopson has recently said national financial constraints means local leaders are being forced to draw up plans they do not believe can be delivered. Many areas are proposing reconfigurations in the “sustainability and transformation plans” that are likely to prove hugely controversial, and the process so far has largely attracted negative headlines and calls for greater transparency [3].

It’s been argued elsewhere that special advisers (“SpAds”) are not the compliant doormats so often characterised of them by the glittering Twitterati. Irrespective of that, it is probably a good idea for ‘leaders in dementia’, defined here by people who review each others’ grants and occupy the same conference slots, don’t view their colleagues as “yes men”. “Yes men” tend to be too busy focusing on following the leader to step up with their own ideas about trends the sector should capitalise on, and tell you what you want to hear not what they’re really thinking [4].

Furthermore, “groupthink” is so powerful it can make us miss the obvious; when a person feels like there is a group consensus, even if they don’t agree with it, they are less likely to speak up [4]. This is what I suspect happened recently with the English dementia policy. I of course shouldn’t for moment that the leaders in dementia policy are professional “lickspittles”, or “abject flatterers or parasites.”

But look at how “caring well” has been so unceremoniously lobbed off Public Health England’s Dementia Intelligence Network (DIN), designed to work across all organisations involved in the care and support of people who have dementia, and a focus of the Department of Health’s 2020 Implementation Plan [5].

The dementia profile, developed by the DIN and launched on 12 January 2016, collects new and existing data on dementia at both CCG and local authority level;  the data cover six key domains across the entire dementia pathway: prevalence, preventing well, diagnosing well, living well, supporting well, and dying well.

But why no “caring well”? Is that the details of respite care, domiciliary care, care home medicine or clinical nursing specialists do merit a mention?

I believe strongly about this as clear ‘care pathways’ would define roles and responsibilities within the care system, and establish standards to be monitored and met. Care pathways, a structured and organised approach to the coordination, resourcing and delivery of continuing care, are now a common component of chronic disease care for other conditions including diabetes, hypertension, and cancer care. But why not dementia? [6]

It is rumoured that the phrase “crisis? what crisis?” was never said as such of a previous Labour government. Irrespective, figures from healthcare analysts Laing Buisson currently show one local authority is paying only half the minimum needed to provide safe residential care, and that only 21 of the country’s 150 councils are paying at or above the lower end of the reasonable cost benchmark [7].

Sarah Pickup has added that the LGA had calculated that even if every council brings in the new social care precept in full, new pressures on the social care sector would still cost £1.3bn more than the precept would provide.

“We see a gap even if everybody did what was necessary in full,” she said, “and that forward gap is only the forward gap, it doesn’t fund the existing pressures in the system.”

Pickup also said that, while the Better Care Fund had allowed some local health economies to “think differently”, it was hard to do in areas where the council and the CCG were very financially challenged [8].

The good news is that there’s always thousands of £ for awareness campaigns for marketing agencies, and I am also a big ‘believer’ in dementia awareness to combat stigma and discrimination. Alzheimer’s Society launched the emotive film ‘Gone’, created by Fallon London, and directed by ThirtyTwo, developed to raise awareness of Alzheimer’s Society.

Nick Bell, Executive Creative Director, Fallon said, ‘This film positions Alzheimer’s Society as the foremost charity concerned with dementia by accurately portraying some of the devastating effects of the condition.’ [9]

And there was more good news from the return on investment from marketing this week, as the 2016 PRWeek UK Awards celebrated the best campaigns, consultancies and teams over the past 12 months. There were 31 categories overall, ranging from Consultancy of the Year to Best Use of a Small Budget. Alzheimer’s Research UK’s “Orange” campaign picked up an award [10].  I’ve previously discussed my ‘beef’ with the orange elsewhere.

The situation is undoubtedly complicated, however. Cuts to social care should not be viewed in isolation from overstretched general practice and community nursing and the uneven distribution of intermediate care beds. Under-investment in primary and community NHS services threatens to undermine the policy objective of keeping people independent and out of residential care [11]. Signs of provider distress are increasing. Seventy-seven local authorities reported that at least one care home provider has ceased trading in their area in the past six months [12].

Earlier this year, it was reported that more than a quarter of care homes in the UK are in danger of going out of business within three years, figures obtained by BBC Radio Four suggest. About 5,000 homes are at risk of closure because they carry too much debt and do not make enough profit to cover loan repayments [13].

I care about the issue that all people with dementia must receive the best health care, irrespective of location, including home, hospice, care homes or hospital. The recent report “Underfunded, underdoctored, overstretched: The NHS in 2016” from the Royal College of Physicians of London made very depressing reading for me [14].

If you cannot look after your workforce, what hope is there for looking after the NHS ‘patients? NHS staff feel caught between rising demand and squeezed budgets, it was reported. Four-fifths of trainees say their job causes them excessive stress; three quarters go through at least one shift a month without water; and, on average, they work an extra 5 weeks a year on top of their normal hours. 95% of trainees warn that poor staff morale harms patient safety [14].

And yet crazily, Professor Dame Sue Bailey is about to lead an independent review to better understand junior doctors’ experience [15].

The review will be led by Professor Dame Sue Bailey, Chair of the Academy of Medical Royal Colleges. Professor Bailey will work alongside representatives from other organisations including the Royal Colleges, Health Education England, NHS England, NHS Employers and junior doctors

I do agree that way healthcare is delivered to people living with dementia needs to change, with a rebalancing toward non-specialist primary care, and planned and coordinated inputs from all levels of the health and social care sectors along with reports elsewhere [6]. This narrative emphasises that care must be holistic, continuous and integrated, with a focus on quality of life for people living with dementia and their carers, and explicit monitoring of processes and outcomes.

But for me it is not good enough to produce yet more ‘charters’ of dementia friendliness. That is why I intend to carry on my campaigning work in dementia, and I am perfectly happy not to be given a seat at the table.

I tried to explain my upset at not being invited to speak at dementia conferences despite my intense passion in the subject, to my friend Chris Roberts. I explained it’s not that I want the ‘glory’ – it’s just I don’t want to be ignored. One happy thing I can say about the English dementia policy is that it is not so easy any more to ignore the views of people living with dementia – and carers – and quite right too!

 

References

[1] The Origin of the Phrase “Speaking Truth to Power” John Green, Demand Media http://classroom.synonym.com/origin-phrase-speaking-truth-power-11676.html

[2] Health Secretary unveils plans to make the UK the most dementia friendly society in the world by 2020 Alzheimer’s Society website https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2569

[3] Dunhill, L. Revealed: NHS England checklist for making STP details public. 14 October 2016.   https://www.hsj.co.uk/topics/service-design/revealed-nhs-england-checklist-for-making-stp-details-public/7011455.article?blocktitle=Most-popular&contentID=-1

[4]  Why a company full of yes men leads you nowhere. http://www.the1thing.com/blog/small-business-advice/why-a-company-full-of-yes-men-leads-you-nowhere/

[5] Prime Minister Challenge on Dementia 2020 Implementation Plan from the Department of Health https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/507981/PM_Dementia-main_acc.pdf

[6] LSE blog. Report calls for global action to tackle dementia crisis http://www.lse.ac.uk/newsAndMedia/news/archives/2016/09/Global-dementia-crisis.aspx

[7] Dementia care in crisis over lack of funding from councils. Lucy Johnstone. Daily Express (Sun, Jul 17, 2016) http://www.express.co.uk/life-style/health/690170/Dementia-care-crisis-lack-funding-council-UK

[8] Integration alone ‘will not solve challenges of social care’ Public sector executive (11 October 2016) http://www.publicsectorexecutive.com/Public-Sector-News/integration-alone-will-not-solve-challenges-of-social-care

[9] Alzheimer’s Society Launches ‘Gone’ m2m blog http://m2mmedia.com/alzheimers-society-launches-gone/

[10] PRWeek UK Awards 2016: Winners revealed (October 2016) http://www.prweek.com/article/1412065/prweek-uk-awards-2016-winners-revealed

[11] Social care for older people: home truths September 2016. Humphries, R, Thorlby, R, Holder, H, Hall, P, Charles, A.
http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Social_care_older_people_Kings_Fund_Sep_2016.pdf

[12] ADASS. Budget survey 2016 https://www.adass.org.uk/budget-survey-2016

[13] Quarter of UK care homes ‘at risk of closure’ http://www.bbc.co.uk/news/uk-36200855

[14] Underfunded, underdoctored, overstretched: The NHS in 2016 RCP website https://www.rcplondon.ac.uk/guidelines-policy/underfunded-underdoctored-overstretched-nhs-2016

[15] Department of Health (12 February 2016) Independent review of junior doctors’ morale, training and support https://www.gov.uk/government/news/independent-review-of-junior-doctors-morale-training-and-support

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