interor of winterbourne view

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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