For the last month or so I have been researching the background to the deficiencies in the history of the development of services for people with learning disabilities. This was brought about when my attention was drawn to the increasing number of people who have set themselves as experts and are publishing information that it totally inaccurate and misleading. Although this came as no surprise, it deeply concerned me.  Reputable bodies such as universities were accepting and passing on this information as factual. Although I have continued to draw the attention of many, particularly academics and charity executives, to the discrepancies between fact and fiction, this has been ignored.

The problem is that there is no reliable reference source to which serious researchers can get to know the truth concerning when and how things went so badly wrong. The timeline of learning disability history published on the Open University website and supported by many other reputable universities, misses out information on vital developments between 1970 and 2001 that for many thousands of vulnerable people were to be life changing events. This was a critical period when appalling mistakes were made that transformed successful policies into the disastrous state that exists with care in the community today.

I am currently finalising an intended monograph that will spell out the timeline of developmental history of learning disabilities day services as seen through the eyes of a practitioner. Inevitably this leads back to those publications I have previously held responsible, namely the King’s Fund Centre’s ‘Project Paper No. 50 ‘An Ordinary Working Life’ (1984), the Independent Development Council’s ‘Living like other people’,(1985) and East Sussex Social Service Department’s documents ‘Working it out’ and ‘Responses to working it out’ publications 1986/87.

Events and evidence supports the view that these publications were largely responsible for the decimation of services that followed. Information already in the public domain provides an interesting insight into the parts played by David Towell,  a Fellow in Health Policy and Development, King’s Fund Centre, and Ken Young, Director of Social Services, East Sussex County Council, who took it upon themselves to circulate theories based on speculation and wishful thinking without apparently carrying out reliable and validated research. More to follow.

FINOLAMOSS Posting

A heartfelt posting is going around at the moment that deserves much wider circulation. Based on a series of WordPress postings by FINOLAMOSS it is a tragic commentary on the perils of presuming that ‘inclusion’ provides the only acceptable solution to all who seek lifestyle security and fulfilment.

Thomas Rawnsley dead three years. Still no answers

 

“Never forget.

it wasn’t the spewing yell of Hitler’s speeches.

it wasn’t the constant clatter of jackpot lines.

it wasn’t the thundering hail of bombs smashed

across Europe.

All that was required to enable the Holocaust

was silence.

Never forget.”

A narrative by David T Gore provides s reminder of the price that can be paid when evil prevails if the rest of us sit back and do nothing.

 

Sunday was the third adversary of Thomas’s death.

He was a fit 20 year old, born with Downs Syndrome , later labelled autistic..

Thomas’s abuse and death is a testament  of our society, morality and humanity.

His mother was not allowed to stay with him during his last night on earth. Her access had been prescribed since he was 17.

She was not even allowed to be alone with him when they switched off his life support machine. No private rooms were available.

The only ‘kindness’ shown was an attempt to obtain his body parts.

https://finolamoss.wordpress.com/2016/06/02/thomas-rawnsleys-death-the-final-inhumanity/

Working full time, Paula was to bitterly regret her cry for help with a teenage Thomas.

Unknown to her, a yellow star was already next to Thomas’s name – Downs and autistic.

His fate was sealed.

Social workers came in, assessed, and were over critical of his behaviour – he had pulled down a curtain .

CAMHS got involved and he was medicated with halopidol and respiridol, an overdose made him fit.

Fluoxetine was added making him fly into hypnotic rages from which he recovered with terrible remorse., unaware of his actions.

As with all autistic and learning disabled, Thomas’s only support was his ‘ independence’ from his family.

So at 17, he was removed from his Mum, Dad and sisters to his own 24/7, 24 hour carer attended bungalow owned by Homeleigh Ltd, now bought by Cambian, complex .

But his ‘independence’ did not even afford him freedom from abuse.

For 6 months, a 4ft 10 inch Thomas was kicked by a large 54 year old experienced worker, into his bedroom , his fingers bent back with the words ‘lets see how many I can break this time ‘.

This was two years after Winterbourne View aired.

The Recorder said, ‘We have to respect those who care for our young disadvantaged’ .

https://finolamoss.wordpress.com/2016/01/18/thomas-rawnsley-2012-13-bullied-and-assaulted-in-independent-living/

Thomas was then removed from Homeleigh to an Adult Treatment Unit for more medication, as workers said he distrusted them.

Paula gave her job up to care for Thomas but couldn’t get him back.

As Thomas was worth too much – over £6,000 a week to ‘independent’/’community living’ as under 25, paid by LA. NHS and D of E.

And £9,000 a week to a mental hospital.

Thomas was the first inhabitant in his new ‘home’ Kingdom House in Sheffield, opened a month earlier, it had not yet been inspected by CQC, and was still half empty when he died .

My own daughter was to be taken there, the very day Thomas died, after stabilisation in a holding bay.

A care worker remarked to me, ‘They are rounding them up and making pin cushions out of them.’ 

But Thomas would not be beaten into submission, his spirit was indomitable, and he died.

The Coroner postponed his inquest in July 2016, to allow an investigation by NHS England .

This investigation would determine the remit and evidence of any subsequent inquest.

Already Paula had had to crowd fund to pay for a lawyer and toxicology reports.

NHS England commissioned Thomas’s Cambian ‘Care’ via Sheffield Clinical Care Commissioning Group from Sheffield Health and Social Care Foundation Trust, a private company since 2015.

So NHS England would be liable if it found Cambian caused , or contributed to Thomas death.

Although the tax payer Paula would pay the bill.

Below is a reminder of Thomas’s fate in pictures taken by Paula.

Think of the many not photographed , as deaths under MCA DOLs and MHA soar.

With just 1% even internally investigated and even less  inquests will be held when Medical Examiners are appointed in April.

https://finolamoss.wordpress.com/2018/01/21/the-natural-causes-cover-up/

With no juries or legal aid available at inquests for those, like Thomas ,dying under a Mental Capacity Act Deprivation of Liberty Safeguards .

Paula’s words posted before Christmas,

This time of year isn’t just hard because my son isn’t here to spend it with(although that’s hard enough on its own). Its the memories of a child’s suffering(my child)of him crying for me and begging for help, its memories of him telling me people are hurting him, of people dismissing us when we were screaming out!!

Follow up to Caroline Dinenage Minister for Adult Social Care

 

Follow up message to Caroline Dinenage, Minister for Adult Social Care and Disabilities.

Further to my email of the 19th February and my proposal that the terms of the Oxfam judicial review should be extended, I feel obliged to submit further justification.
There can be little doubt that the indiscriminate dismantling of vital support services for people with learning disabilities has left current and future care in the community policies in total disarray. Much trauma and distress for the families affected could have been avoided if significant lessons that should have been learnt from history had been taken on board.
Regrettably, therein lies another major problem that deserves closer scrutiny, the historical evidence relating to the most critical era in the history of support services for people with learning disabilities has by default or intent been omitted or blatantly covered up.
One has only to look at the ‘Timeline of learning disability history’ published by the Open University, with the approval of numerous other UK Universities, to recognise that there are glaring gaps in the period when sound evolutionary policies were being transmuted into ‘politically correct’ dogmas that have since proved to be disastrous.
This has been the work of a relatively small group of ‘would be pioneers’ who inherited a legacy from the real pioneers who had successfully set in progress the foundation for rational and achievable care in the community policy. A legacy that has since been decimated and thrown away.
Incredibly, the small group allowed themselves to be brainwashed by a few individuals who fulfilled their own limited agendas. But where were the mass of other intellectuals and academics who permitted this to happen at immense cost to the victims?
An extended judicial enquiry is surely warranted to explore thirty years of wasted financial and human resources, and more seriously, the human suffering that has arisen because of irresponsible responses to misinformation?

Follow up to Oxfam Judicial Review

 

For the attention of Caroline Dinenage, Minister of State for adult social care.

Re Oxfam judicial review

It is very sad that a judicial review has become necessary under such circumstances, but a judicial review concerning the conduct of major charitable organisations dealing with vast amounts of taxpayers and voluntary public donations is long overdue.

As Minister of State overseeing adult social care, the Department of Health and Social Care, Caroline Dinenage has been given an impossible task. She has a responsibility, on behalf of carers, and in the interests of her new role, to press for an extension to the current judicial review on Oxfam. This should include the criteria upon which ALL charities appoint paid CEOs, and to the extent to which major charities have been allowed to misuse their resources and influential power recklessly. As a consequence, adverse influence on policy direction has directly threatened all levels of people with learning disability, particularly the most profoundly disadvantaged.

Extended correspondence with successive Mencap CEOs led me to point out to Janine Tregelles, current CEO, on the 31st January 2017, “…..that Mencap’s executive team comes over as a team devoted to accumulating money and controlling large numbers of staff as the corporate side of the business continues to grow”. It would seem that, as Mencap HQ has grown richer, service support options for its membership and fellow sufferers within the community have got increasingly poorer. Janine did not agree, hence my continued pressure for open debate in the public domain. Something is seriously amiss if the taxpayer, and the public who are constantly pressurised for voluntary contributions, are footing the bill for expensive corporations who now seem so out of touch with their original purpose for existing. What better option to restore sanity to future rational and achievable policies, than a judicial review before care in the community is irretrievably lost?

I have recently had personal correspondence with Gareth James, formerly the Lead for Dementia and Disabilities, who, although very polite and amicable, regrettably clearly did not grasp the complexity of the task with which he was burdened. Can there be the hope that Caroline will have a wider perspective?

 

 

 

 

The appointment of Caroline Dinenage as  Minister of State overseeing adult social care, the Department of Health and Social Care

The appointment of Caroline Dinenage as  Minister of State overseeing adult social care, the Department of Health and Social Care could be the political ‘kiss of death’ for Caroline, or the first glimmer of hope for the 1.4 million families with members who have learning disabilities. It could well be that she will be the first Minister since Enoch Powell in the 1960s who has shown genuine concern for this vulnerable and disadvantaged section of our society.

But first, there must be recognition that care in the community is in terminal decline. The hemorrhaging of vital services  over the years, and the cover up of the betrayal of these people by academics and major charitable organizations responsible for their welfare, needs to be scrutinized and debated.  Will this happen?

Extremely doubtful, for to hand back responsibility for social care for people with learning disabilities to the Department of Health in the light of its past dreadful performance (Institutions and the ‘chemical cosh’), suggests that absolutely nothing has been learnt from social history.

For further insights and information, please refer to my website http://learningdisabilitiesproblems.co.uk

Mental Handicaps or Learning Disabilities – Does the Media really Care?

Emails to national Press  January 2018

NHS/Social Care Policy Dilemma/ Summary

Rarely has there been a greater need for transparency, rarely has there been such an extended cover up. There are estimated to be about 1.4 million people with learning disabilities of all levels of severity and complexity in the UK. Along with their carers, untold thousands of these people have suffered grievously from the policy vacuum brought about and extended over many years by individuals and organisations who were charged with protecting and supporting them.Where openness should have been encouraged it has been suppressed, where the truth could have given hope it has been distorted. What could have been developed into a rational, comprehensive, financially sound, and equitable national care in the community policy has disintegrated into a debacle. Handing responsibility for Social Care back to the NHS is not a solution – unless Jeremy Hunt recognises how incongruous this is and sets up a separate division entirely from the medical/surgical model. Otherwise, if a society is to be judged by the way it treats its most vulnerable citizens the UK will have failed abysmally.

Attached is a summary embracing the broad events of the past half a century. This is supported by a wealth of information and documentation accumulated over many years. It is not for sale, but is available free to any well-motivated investigative journalist who believes that justice for these people will not prevail until the controversial issues that brought about such scandals as Winterbourne View are debated openly in the public domain.                                     …………………….

In the 1950s/60s the ‘medical model’ was the order of the day – a combination of institutional care and medication – the ‘chemical cosh’, I believe it was termed. 50,000 adults and children were incarcerated in large 1000 plus institutions. The Health Service dominated responses to the needs of the learning disabilities section of our society Only about 4000 day care support places were available for those fortunate enough to remain in the community.

Now, in 2018, the NHS is again taking control of responding to the needs of people with learning disabilities, the principle of building large institutions has been approved by the government, and there is no clearly defined strategy for restoring meaningful day care.

The clock has turned back half a century yet there is hardly a bleat of protest. So, what has gone wrong?

In the 1960s it was accepted that the ‘medical model’ was a total failure and care in the community was the humane alternative. Through the efforts of Enoch Powell and humanitarian professional psychologists the process of enabling 50,000 people with all manners of challenging behaviour to escape from incarceration in institutions began in earnest. With only 4000 places being available at the time this was a mammoth task, the success of which is in no way appreciated today. Leading the way, dedicated Professor Alan Clarke, supported by his wife, Professor Ann Clarke, had by the mid-1970s encouraged and supported an extensive range of alternative options available for those in need of all levels of support and their carers.  By the mid-1980s there was still much to do but a policy strategy had been set up that could form the basis for the development of an equitable national policy. But it did not happen!

Why did this not happen? Simply because the direction and determination of policy was taken out of the hands of dedicated experts by a group of individuals who had their own agendas but were too inexperienced to recognise their own limitations. And so, began the descent into the morass that care in the community has become. For 30 years the government has been taking advice from the wrong people, and for 30 years service users and their carers, by default or intent, have been victims of the biggest corruption of service policy in social history.

Until the extent of the betrayal of trust by the organisations and individuals (major charities and academics) who should have been fighting for their rights has been exposed, nothing will change. The government will continue to take the wrong advice and those individuals and organisations who have their own agendas will continue to give it.

The NHS is a medical and surgical resource and needs to retain and consolidate its identity as such – that is what the massive surge to protect the NHS is rightly about. The overall needs of people with learning disabilities will not be taken into account – the NHS are not and never will be a social care resource.

Carers will not get a fair deal until their needs are responded to by a service structure that fully understands their problems. Giving responsibility for learning needs to local authorities in the first place was a disaster – to leave it with the NHS could be catastrophic. Until there is an appropriate Department with its own Minister nothing will change for the better.

…………………………………………………………..

Charles Henley    http://learningdisabilitiesproblems.co.uk

The Delusion of Inclusion continues into 2018

So, once again carers enter yet another year questioning whether their needs will be recognised and their disadvantaged family members will eventually receive the appropriate level and quality of service which they deserve. A short reflection on just a few notable events of 2017 does not inspire great confidence.

Reverberations of the Winterbourne View scandal struck home when a Channel 4 Despatches documentary of the 1st March 2017: ‘Under Lock and Key’, addressed problems arising at St. Andrews,  a hospital which has more than 50 wards and 659 beds.

Two other shocking reports in June drew attention other disturbing aspects of service provision and the vital need for caring and valued staff.

Also reminiscent of Winterbourne View, Bristol Crown Court on June 6t,h saw the sentencing of people with responsibility for the care of people with learning disabilities imprisoned for “organised and systematic abuse” of disabled residents. The owners and staff of the Atlas Project Team were accused of running a culture where “systematic neglect” was the norm. They were paid up to £4000 per person per week to provide care for these vulnerable people.

The end of June saw the publication of ‘A Trade in People’. This an interesting and detailed review of the distribution and availability of specialist residential resources for people with challenging learning disabilities published by The Centre for Disability Research, Lancaster University. It considers the financial implications and the stress that economising imposes on families attempting to maintain close relationships.

Not least, the taking over of 200 NHS and local government commitments, including statutory obligations such as Adult Social Care, by Virgin Care from Somerset authorities spelt the end of any equitable national policy in the foreseeable future.

Perhaps, most sadly, was the news that Scope, one of the few big charitable organisations upon whom carers could look for support for a return to rational policies, have abandoned the policy of providing a continuum of reliable residential and day care services. Far from embarking on an innovative pioneering exercise, ample evidence suggests Scope has been misled into following in the footsteps of the numerous failed dogmas that have decimated support services over the past 30 years. An appalling catalogue of setbacks and suffering can be linked to the charlatans who influenced  policy direction despite lacking adequate  validated research.

Although I have had direct contact with the government official lead for the disabled over the past few months absolutely nothing has been learnt as the government continues to take advice from the wrong people. My thoughts and thanks go out to those determined carers who support any efforts to do something about it.