Winterbourne View is described in your blog as a home. Of course it was a private hospital and these institutions were never subject to a star rating. The silence about alternative descriptions of quality provision and the public information offer will no doubt feature in the forthcoming support and care bill

Thanks very much for responding Alan: I suspect the way we categorise services wouldn’t have meant anything to the people living at Winterbourne View or their families. How long does one have to live at a hospital, private or otherwise, before it is classed as ‘home,’ - 6 weeks or 17 years? ( http://www.cqc.org.uk/sites/default/files/media/documents/cqc_ld_review_national_overview.pdf ) (PDF on external site, 417Kb)

I’d be interested in your views about the suggestion in the piece of the government empowering CQC to play a more pro-active role in market shaping; it seems to me this has potential to change the status quo more rapidly than the raft of what might be described as well meant recommended cultural changes.

Hi John

Indeed. There can be no justification - human, therapeutic or financial - for these long stay semi-prisons for people with learning disabilities and mental health problems.

Having visited numerous of these places, I can say that most of the time spent there by service users is simply existing - even with a full 'programme of activities' or 'individual care plans'. Access to therapy or treatment is either minimal or takes an inordinate amount of time to start or complete. An intervention, or even an assessment, that should take a matter of weeks at most can take months and often years. People do not need to languish in these places (and it costs the tax payer huge sums of money - definitely not VFM!).

There is also a more subtle abuse going on - several (sometimes as many as 20) people with challenging behaviour and/or complex problems are living together in a confined and often volatile environment, a situation that would test anyone. Verbal and physical conflicts are common - and this 'behaviour' is used to justify the continued need for the placement...and so on...

I think the problem is two-fold - short-sightedness and lack of directive. It is cheaper in the short term to farm people out to other services. Yet there are lots of examples to illustrate that an investment in the 'right' service for the individual saves bucks further down the line. It also seems that LAs/Commissioners need to be told to adopt this approach - preferably with penalties if they don't comply.

Regulation should not compound the problem. If the regulatory approach encourages Winterbourne-style provision, this needs to change...

There are ways to achieve the change, and it seems a will. I don't think it has to be that complicated - a clear policy & implementation plan, a directive and a few initiatives to make sure it happens such as the named worker suggestion and a simple framework for monitoring.

Now we just need to get on with it.

Kind regards

Kay

I think the classification does matter to families and patients. Services that are described as assessment and treatment units which then house people for years is inconsistent with that description. For many of the families I have spoken to they think there are too many assessment and treatment units and that what is needed is strong central direction to ensure that there are only the requisite number of hospital beds needed based on good strategic assessment. Alongside this they want commissioners to commission good quality safe services that are consistent with the ideas that Jim Mansell set out ad infinitum

Hi John,

I enjoyed your post - I think Winterbourne View raises a range of questions about a) commissioning decisions; b) market conditions within which commissioning takes place; and c) regulatory and legal safeguards.

NDTi's conclusions really do suggest that a top-down muscular approach will be needed to shut down these services and provide decent alternatives. Of course, the difficulty is that terrible abuses and restrictive practices can sometimes move out into the community - the abuses in Cornwall exposed in 2005 largely took place in supported living services, although most people only remember Budock hospital.

I live a few miles down the road from Winterbourne View. It's a large office-like building in a business park. It's not on a regular bus route, it's not near any housing or shops or communities. Whilst we can have terrible services provided in the community there is at least hope for improvement through the suggestions you make - advocacy, proper improvement-driven regulation and long-term involvement of social care professionals. But places like Winterbourne View can't improve - they will never resemble homes, never offer opportunities for integration, and can only compound isolation, de-socialisation, institutionalisation.

I feel that proper safeguards on involuntary placement under the Mental Capacity Act are also vital - what pressure for improvement can there be if people can just be steamrollered into services where they are miserable and cannot leave on the basis of an untested, and uncontestable, capacity assessment and best interests determination? The DoLS are a poor system, but in the future I hope we will have better safeguards for involuntary placement - all across Europe and the Commonwealth countries are beginning to wake up to this issue, and it's about time the UK did as well.

As an aside, I frequently hear claims (including from CQC's own staff) that it just has a compliance remit, not an improvement role. But s3(2) of the HSCA 2008 does say that:

'The Commission is to perform its functions for the general purpose of encouraging...the improvement of health and social care services;the provision of health and social care services in a way that focuses on the needs and experiences of people who use those services, and... the efficient and effective use of resources in the provision of health and social care services.'

I can't see how they can continue to support services that use a model of care that is discredited, results in poor outcomes for service users, and that is an inefficient use of resources. Williams' contention that a bit of PCP can turn a locked ward in a business park into a service that results in decent outcomes is hopelessly naive.

Hello John,

My uncle died a few weeks ago and it has made me reflect on systems of care. There are a lot of failings I won't even mention. He was born with Down's Syndrome and as a baby became a ward of court and was locked away in a "mental institution" for over 40 years. It was a horrible existence and he never learned to talk or communicate by other methods.

The Community Care Act released him from his imprisonment and after two moves (one manager suddenly ceased to trade and all residents had to move)he finally settled for nine years in an outstanding community home where he lived with three residents that he had grown up with. The thing that made all the difference was not necessarily the systems and procedures and star rating although we would rank it exceptional on all counts) the biggest factor of care was love. The staff were passionate about their residents and giving them a quality of life that they never acquired as children and young people. My uncle learned to laugh and smile and seek a hug and gain access to a community that had happily locked him away. However, when his medical needs increased he was moved to a private well known nursing facility which felt it was acceptable care to leave him lying in a cot staring at a ceiling for over two years. His personality disappeared.

In his final week when we sat in a NHS hospital 24 hours a day while he was dying (because they didn't know how to care for someone with learning disabilities who was non-verbal on their ward) we remarked that no one knew how to respond to his needs when he was born and when he died 64 years later the medical world still did not know how to respond to his needs.

The social model of care worked for him but the medical model of care failed him twice. Reports come and go but sadly at times there can be little evidence of change. At his funeral the staff from his community home which he had left over two years previously attended and wept buckets at their loss. It was love that drove them into excellence every minute of every day. Perhaps the real issue today is the utter absence of loving kindness.

Hi Lucy

Thanks so much for your feedback and comments. I was interested in your local perceptions of Winterbourne and this type of provision and agree with your views about it being an inappropriate service model. My point is why the government can't; if it’s serious about this, simply introduce new powers for CQC to ensure that no more similar services are registered – it could do this if it wanted to surely?

I’m interested also in your views on involuntary placements under the Mental Capacity Act and DoLS – would you be interested in blogging for us on this? If so please contact me on info@vodg.org.uk

It's good hearing someone else quoting s3(2) of the HSCA 2008 as we point this out at every opportunity. Unfortunately I’m not convinced about the ‘quality’ proposals in yesterday’s white paper. It all seems to be a muddle to my mind we’ve now got CQC/NICE/HQIP/Monitor/SCIE/TLAP etc; etc all involved in social care quality standards. I will be blogging on this in the next few days but in the meantime look-out for my initial blog response to the white paper which will be posted later today.

Keep in touch.

Kind regards

John

Hello M Catterick (I’m sorry that I don’t know your first name).

Thank you; sincerely thank you, for leaving such a powerful and moving testimony about your late uncle. It made me feel incredibly sad that for so many years he probably had a wretched life and now it is too late to offer him love, respect and warmth.

I also lost an elderly and much loved aunt recently; a dignified private woman, who for the last six weeks of her life faced the ignominy of dying on a hospital ward. In fact she probably wouldn’t have died but for the fact that she was allowed to fall out of bed twice – sustaining further injuries – and all the while on an intensive nursing ward. Individually the nurses seemed to be caring and warm but the system overall failed her to the point of death. I’m afraid this happens time and again to elderly and disabled people in the NHS and it’s a national disgrace.

I share your view that the real issue today is the utter absence of loving kindness. The NHS and nursing in particular requires a huge cultural shift – why do they even seek to preserve human life when they don't seem to know its true worth?

Thank you again for sharing your story. The VODG will do what it can to improve matters in honour of your late uncle who the ‘system’ so clearly and badly failed.

Kindest regards

John

Hello John,

I am sorry to hear that you aunt received a poorer quality of care than she deserved to obtain. Isn't it rather sad that despite having a well developed health care system we fail to deliver a great quality of care, for everyone, all of the time. When you add disability, dementia, or other vulnerabilities into the mix then the likelihood of getting the highest quality of service from the health professionals diminishes rather rapidly. Staff can be lovely, but lack of training, lack of finances and lack of staffing would impact even the best levels of care.

I also believe that families aren't fully informed about what is available for their loved one who has a disability. If there are reviews, people assume knowledge in the extended family but there is no clear documented trail of information given or checks for understanding. People with disabilities can often be placed out of the locality so it isn't always easily for families to be able to access their loved one easily to check on their well-being. Families can be uninformed about their legal parameters and rights. For example - the next of kin needing to be aware that there is no will and death with money will mean probate. Many families have not been told this. The multiple systems of care are so complex to an outsider.

In addition, many professionals can be involved in a person's life to deal with a small aspect of their health and with no dedicated nominated person who joins up the threads, the individual can easily slip through the net. They need a nominated person who understands the system and what services are available and who can convey that clearly, on a regular basis, to family members outside of an intimidating review process (if indeed a review happens at all!).

I submitted a two page letter of our experiences of staying at the hospital while my uncle was dying. I was told by the NHS team that they had lessons to learn about coping with people with learning disabilities on the wards. They want to use the data as part of a training workshop they now know they need to put on to equip staff with updated skills. I trust that this is a positive, albeit small, legacy for others in that hospital - if indeed they follow through with it. It would appear that we all have to do our little bit not only via legislation but also grassroots responses such as mine.

A life compromised by prejudice, ignorance, apathy, or a lack of robust systems, resources, or love should never be an acceptable excuse for poor quality of care.

Regards Maria

Hello Maria

Thanks again for your thoughtful and thought-provoking reply. Just to add, do you know about Mencap's death by indifference campaign? http://www.mencap.org.uk/campaigns/take-action/death-indifference.

We're holding a conference on Oct 16 on learning the lessons from the Winterbourne reviews - keep an eye out for booking details on the VODG website. If you'd like to attend this event as our guest you'd be very welcome.

Best wishes

John