Correspondence with the Department of Health


An email from the D of H 3rd November 2017, and my response on the 13th November


Thank you for your e-mail, which we will certainly bear in mind.

Our current policies –  to improve the health and wellbeing of people with learning disability, and to support independent living and employment, represent the goals which people with learning disability, and their families and carers want, and aim to remove the inequality which exists in society between people with a learning disability and those without.  In particular, supporting people with a learning disability to leave hospital, and live in the community, is specifically designed to alleviate suffering, and has the added benefit of saving taxpayers’ money.

I would agree wholeheartedly on the need for gaining a wide range of views and feedback to inform policy. This is certainly the basis on which current policy is developed. The Department engaged with a range of groups and organisations. In addition to ad hoc discussions, and formal mechanisms such as the Transforming Care Delivery Board, or the Children’s Complex Needs Board, we have regular discussions with the Learning Disability Professional Senate, for a view from the professions. We have also this year provided – together with NHS England and Public Health England – funding to partners to comprise a Health and Wellbeing Alliance; and there are several partners in this Alliance  – the Win-Win Consortium and the Valuing People Alliance – which will be supporting our engagement with people with learning disabilities and the organisations which represent them. We will of course be very keen to discuss with NICE the evidence and responses they have received as part of their consultation.

I hope that this provides some reassurance.

Best wishes










Gareth James

Policy and Strategy

Dementia and Disabilities

Social Care, Ageing and Disability Directorate

2E56, Department of Health, Quarry House,

Quarry Hill, Leeds LS2 7UE

0113 2545328  /  07867 832768

To Gareth James

Policy and Strategy

Dementia and Disabilities.

Social Care, Ageing and Disability Directorate

2E56 Department of Health, Quarry House

Quarry Hill, Leeds LS2 7UE



Thank you for your email of 3rd November 2017.

The objectives outlined in your first paragraph are highly commendable and I am sure that these meet the approval of the disadvantaged users, their carers, and taxpayers generally. I must point out, however, that these have been the basic aims of progressive practitioners for the past half a century. Positive progress was being made until the 1980s, since when the prospect of reaching these objectives has receded rather than increased.

Whilst it is right and commendable that a wide range of groups, individuals, and organizations have been consulted, the extent to which the feedback is based upon reliable and valid information is questionable. With the complexity of the wide-ranging demands that need to be met it is inevitable that those feeding back opinions will also have a wide range of diverse agendas.

A wealth of knowledge should have been gained from developments that took place over the past half a century but social historians (led by misguided academics), have instead focused on extreme politically correct ideologies and airbrushed common sense out of existance. Consequently, the Government are still seeking guidance from doubtful sources, and powerful organizations like Scope are pulling out of providing quality residential options. The current West Sussex care homes scandal continues to highlight the inadequacies and folly of relying on the private sector for quality service provision, whilst Scope ventures into a radical policy direction that has ominous and serious parallels with the past.  Having been put to the test similar ‘bold visions’ have manifestly failed disastrously. The current deplorable state of care in the community is a fitting testimony to the failure to learn from past mistakes.

Nothing will change dramatically until the base upon which current policy trends have been built is identified. Nothing less than a formal judicial enquiry will bring to light the nature of the cover up that has stretched out over so many painful years, and why the overview of a designated Minister for People with Learning Disabilities is vital.

Best wishes


Catch up 10 – The Petition

First published Facebook 20th April 2017

To: Social spokespersons for political parties
Restore justice for the disabled
CHContact Campaign Creator
Campaign created by
Charles Henley
Restore justice for the disabled
Reverse current direction of care in the community policies

Why is this important?

Recent Channel 4 ‘Under lock and Key’ documentary confirms that rational care in the community is being turned back half a century
Restore justice for the disabled
The coming election is an opportunity for carers to pressurize their potential MPs for dramatic change to humanitarian policies – but not only carers, but the general population at large who do not realize the intense pressure that their neighbours are under.
In my line of work, learning disabilities, I have seen this worthy section of our society cheated out of the quality of service they need and deserve.
Carers, desperately need the support of the general public, for parental commitment is not just for the relatively short time that we fortunate ones experience with children who eventually fly from the nest to lead their own independent lives, but for a whole lifetime. This can be into their 70s and 80s, when, sadly, too often they live in hope that their children will die before they do.
These people all, to a greater or lesser degree, need the stability and continuity of specialist and structured input regardless of location; there should be no post code lottery.
Many years ago, for a very brief time they had the prospect of a fulfilling service influenced by caring humanitarian professionals and implemented by dedicated practitioners. But this was not to last as influence and implementation of policies was taken over by local authorities and self-proclaimed experts who pressurized a one-size-fits all model of extreme inclusion.
The contention of the extremists was that relationships between people with profound or severe disabilities were of an inferior nature and against their best interests. They were not ‘valued’ people and would never become ‘valued’ people unless they were involved in community activities with ‘normal’ people and could learn from their role models.
However well-intentioned, this ‘normalisation’ concept was out of touch with reality. The overwhelming majority of these people were already within communities where they were ‘highly valued’. Their special needs were being met whilst they were encouraged to broaden out into the wider world if they had the wish and capability to benefit from it.
In pursuing their own agendas, the extreme inclusion lobby broke up happy and contented residential and day care community groups, deprived them of lifelong friendships, and plunged their lives and those of their carers into lives of loneliness and uncertainty. No effective research had been carried out, the extreme inclusion policy was based on unrealistic wishful thinking.
At the top end of the scale, the more able people became deprived of opportunities of sheltered employment in local authority workshops and Remploy which closed because the extremists contended that working with other disabled people “stigmatised and segregated them from the community”! Nobody fought harder to keep these places open than the people with disabilities who worked in them!
But nothing has been learnt, for the original flawed one-size-fits-all dogma has been superseded by yet another one-size-fits-all proposal that does not stand up to close scrutiny – the bespoke personal budget care package.
This would be a reasonable option for many if it was affordable but it is public knowledge that financial support for adult social services is under extreme pressure and cuts are already being made extensively. If, in fairness, this option would be available to the 1.4 million people all in need of support of some description, the cost of meeting demand is unimaginable. The highest amount I have seen on record is a budget of £650,000 per year to meet one person’s individual expectations.
Current policies are not solving current problems; there is already a lack of appropriate community support services available to enable about 1500 people locked into NHS care to be freed into the community within the next two years.
Billions of pounds have been poured into a deep black hole over the recent decades because policies have been influenced and implemented by more than 120 town hall administrators – this has now been extended by a substantial number of Commissioners.
The impending election offers an outstanding opportunity put an end to this utter waste, and demonstrate that a new government will put humanitarian values above party political needs. All levels of disability are under pressure and need consideration. There are no easy answers, but for those with learning disabilities historical experience has shown that there have been better solutions.
50,000 people were liberated from institutions when policies were influenced and implemented by experienced and caring leaders and practitioners. This period of development has been airbrushed out of history – but it needs to come back. There are still people capable of bringing it back and leading a single service agency with its own Minister that could revitalise the outlook for people with learning disabilities at all levels.
The next seven weeks provide an opportunity to assess the calibre of those seeking election or re-election. If we cannot get a cross-party mandate right for the most profoundly disadvantaged and deserving people in our society, what hope is there for the rest?

NICE consultation guidance and recommendations October 2017


With the hope that there will be an opportunity to get the opinion of the Government Lead responsible for people with disabilities I followed yesterday’s post directly today with the following email to Gareth James at the Department of Health                                 …………………………………….

Mr Gareth James

Policy and Strategy / Dementia and Disabilities /Department of Health

Dear Gareth,

Further to my email to you on the 24th September 2017, as I have had neither acknowledgement nor reply I am wondering if my email has gone astray?

As you will be aware, the NICE guidelines and recommendations concerning “Learning disabilities and behaviour that challenges service design and delivery”, are up for discussion and consultation this month.

Although the recommendations are not mandatory, I am sure that those seeking a positive rational strategic outcome to this debate would appreciate feedback directly from you regarding policy direction doubts they are aware I have already raised with you.

For your information, I am attaching copies of my original email to you, and one of a response I have made to an enquiry from a dedicated member of a concerned carers group, the Carers Solidarity Forum.

In my original email, I referred to the fact that 50 years ago the UK was recognized as a world leader in the development of progressive services for people with learning disabilities. It is interesting to note that internationally there still appears to be an ongoing degree of interest shown in what is currently happening in the UK.  Over the last month or two my website ( has received comments from the USA, France, Germany, Switzerland, Norway, Netherlands, Australia, Canada, Brazil, Austria, Iceland, Brussels, Denmark.

Yours sincerely



Liz Jones of Carers Solidarity Forum has thoughtfully asked what my views are on the ‘NICE guideline: short version’ publication up for consultation this month.

‘Learning disabilities and behaviour that challenges: service design and delivery’.


On the whole I thought it was very well written and covers much needed ground. My major concerns remain regarding who determines the critical issues of policy direction and implementation?

Much of this report covers a series of events that were developing in the last quarter of the 20th century. This was built mainly on the work of individual reputations that were never fully challenged nor debated. Consequently, changes have taken place which gave the authority to dictate misguided policy direction  to the wrong people, namely, NHS England. the Association of Directors of Adult Social Services, and the   Local Government Association.

Bear in mind that despite the outstanding efforts of stalwart carers to retain them, the latter two organisations have been responsible for decimating the ‘local support services’ now so desperately needed to reduce demand on NHS inpatient resources and ATUs. The knowledge that these same people helped form elements of the new national ‘transformation policy, ‘Building the right support (2015)’ and are likely to retain considerable power, can give carers little confidence that the future contributions these organisations will make will be any better than that of the past.

The NICE report states that: “Local authorities and clinical commissioning groups should jointly designate a single lead commissioner who is responsible for commissioning health, social care and educational services for children, young people and adults with learning disability, including those whose behaviour is described as challenging”. It continues: “This commissioner should have in-depth knowledge and experience of working with people with a learning disability and behaviour that challenges.”

Regrettably, finding the right people with such commendable qualifications is not an easy task.  Decades ago the structure that existed, and the professional and practitioners involved, ensured that people of the calibre sought were plentiful and identifiable. The ongoing decimation of specialized services has had a serious impact on all areas requiring skills and dedication. Yes, there are still such people around, but they are now a relatively small market. Experience has shown that when plum jobs such as ‘commissioners’ surface those who have shown skill and dedication are passed over as being ‘dinosaurs’, whilst the plum jobs are usually picked up by ‘fringe’ people such as ex-Directors of Social Services. These people are more likely to conform to whatever happens to be the politically correct fashionable policy at the time. And so, until sanity returns and control of policies are unified under an outstanding leadership that reaches for a rational and equitable national policies, there can be little hope for improvement.

The previous popular politically correct one-size-fits-all proposals to get everyone regardless of complexity of disability into paid employment may have been commendable and ambitious but time has exposed how irrational this proved to be. This proposal has been followed by yet another one-size-fits-all doctrine based on direct payments and the extent of personal choices outlined in this publication. Much as this may be right and proper, one must question to what extent hopes will be raised and dashed when the financial and logistical implications of extending these concessions to all who deserve a fully  independent lifestyle are taken into consideration?

It is my view that this NICE document has comprehensively addressed most of the areas of concern that need to be addressed, but has not effectively addressed the critical management structure that could bring this about.

Hard evidence leads me to believe we are instead about to embark on a repetition of a similar disastrous circle of events that took place in the 1980s. It must be a matter of serious concern that nothing, absolutely nothing, has been learnt from past experience.

The Delusion of Inclusion (Continued) Catch Up No.9





Charles Henley First posted on Facebook 4th April

Under Lock and Key’ 4th April 2017

It is now over a month since the Channel 4 presentation of ‘Under Lock and Key’ revealed that carers and their families have been the victims of failed care in the community policy objectives for the past 30 years.

When St. Andrews was given permission to build an extension that would increase its capacity to 110 beds in 2015, it was with the understanding that it was to accommodate the needs ‘of young people across the country’.

I was intensively involved in the 1960s – 80s when ‘medical models’, institutional care and treatment, had been judged to have failed abysmally and care in the community considered to be the right alternative. It was, and enabled 50,000 inmates to be liberated from institutions. Thousands of these people had high degrees of challenging behaviour, and there was no way that they could have survived in the community without the structured and specialist service and dedicated staff provided by day centres and competent residential staff.

When the King’s Fund Centre, aided by Mencap and other charities, campaigned in the 1980s to close Centres and rely on ‘the community’ to take care of all needs, this was clearly utter madness and a clear invitation to the authorities to bring back institutions. I contacted Brian Rix, Secretary-general, Mencap, and David Towell, Fellow in Health Policy and Development at the Kings Fund Centre (extract below), warning of the inherent risks, and have continued to do so ever since.

Channel 4’s documentary left little doubt that institutionalisation had become acceptable again, and the folly of the King’s Fund Centre and Mencap’s‘s misguided intervention might at last become apparent to even the most ardent supporters of ‘extreme inclusion’ fanatics. My personal campaign for 30 years has been aimed at restoring day services to the quality reached in the 1980s – and stopping the return to institutionalisation. I have failed, but they have succeeded in getting rid of all the vital support services that enabled 50,000 to be freed from incarceration and are now so desperately needed by so many other carers. I question whether the King’s Fund Centre supporters are truly proud of their achievement?

The clock has been turned back half a century, and the future looks bleaker now than it was when I came into this area of work in the mid-1960s, amazingly, this has caused scarcely a ripple of interest or protest. Yet, incredibly, the King’s Fund Centre/ Mencap’s’s influence on service provision, built on ‘visions’ has extended across the decades and, with the aid of their supporters, is still influencing a bias against appropriate day services without any logical reason. Nothing will change until the King’s Fund Centre and Mencap recognise and admit ‘they got it wrong’, but as David has evaded all my appeals to him to justify his group’s determination to close all vital supportive services, this hardly seems likely to happen.

The possibility of return to the support levels of the 1980s are now out of the question both about time and cost. As the NHS and LGA have not got a clear strategic policy but are also relying on ‘visions’ for inspiration, the only hope for the future suggests the need for radical action. One viable option is to take advantage of the current indecisiveness about future relationships between NHS/LGA and Social Care.

In my experience, learning disability matters have always been bottom of the heap as far as the NHS and LGA are concerned and always will be – there is need for a divorce. The current aim of carers and professionals and practitioners should be to campaign for an open and objective debate on the merits of a single service agency led by an experienced leader with its own Minister.

Mencap should be leading such a campaign but it has already backed out of promoting this option twice in the past year. Regrettably, its track record conveys the impression it has become a spent force being given the run-around by the NHS and LGA. If carers have the inclination to put pressure on other charitable organisations, MPs, the media, anyone with influence, with an essential degree of unity this could still be achieved.


It gives me no satisfaction, but I append an extract from my first direct warning sent to the Kings Fund Centre, 17th June, 1986, following a lengthy detailed warning already sent to Mencap 22nd March 19” 1986.

This was not in the ‘rocket science’ category, but obvious to an ordinary person who had just a superficial knowledge of people with learning disabilities and a general knowledge of what life is like in the real world.


“I refer particularly to King’s Fund Report No. 50 ‘An Ordinary Working Life’. My original reaction to this publication was that it was so obviously flawed in its premises, research evidence, and assumptions and conclusions, that no practitioner with a basic knowledge of the client group and fundamental knowledge of ordinary working life could possibly take it seriously.

On reflection, I should have appreciated that policymakers however, are invariably not practitioners, and only too few have had relevant experience in contact with the real world that exists outside of their limited professional environments. Consequently, as time has elapsed my complacency has turned first to concern, and from concern to considerable alarm as it becomes very evident that even the most bizarre proposals in this Report are given credibility which is beyond belief.

I believe, that unless a breath of sanity can be restored to the current debate on the issues of community integration and normalisation, the clock will be irrevocably turned about half a century for severely and profoundly handicapped people and their families and for our society as a whole. In this event it will without doubt be a damning indictment of King’s Fund Report No. 50 as one of the most damaging and irresponsible social policy documents to be published this century.”

The Delusion of Inclusion (Continues)

Catchup No.8

First posted  on my Facebppk site 2 March ·

The Delusion of Inclusion (Continued)

My last posting referred to David Towell’s dependence on the box ticking exercise embedded in UN Declarations to provide justification for the King’s Fund Centre’s radical one-size fits -all ‘inclusion’ proposals. My posting concluded with reference to the nature and validity of support that was given to the KFC from the Independent Development Council for People with Mental Handicaps with the publication of: ‘Living like other people’ (1985)

Today, there is need to look at the background to ‘Living like other people’, published in April 1985 by the Independent Development Council (IDC) to understand how IDC came about.

The concepts of the IDC organization were usurped from the valuable work of the highly qualified and experienced team based at the Hester Adrian Research Centre, Manchester University, between 1968 -1982. The HARC had an incredible record of successful research projects including an intensive 5 years study (1972-1977), of day centres in England and Wales. The National Development Group with access to this wealth of expertise and experience were founded and based at the Hester Adrian Research Centre between 1975 – 1980 during which time it published NDG Pamphlet 5, the most successful source of support for positive progress in day care social history.

Following the disbandment of the National Development Group in 1980, the King’s Fund Centre under the leadership of its Fellow in Health Policy and Development, David Towell, seized the opportunity in 1981 to gather a group of reputable individuals and charitable organisations under the chairmanship of Brian Rix to create the Independent Development Council (IDC), which identified within its front cover the aims of the Council:

“To establish effective new means of providing informed and independent policy advice on all aspects of services for people with mental handicap and their families at national level, to build on the previous work of the National Development Group for the Mentally Handicapped, to offer strategic advice on the development and practical implementation of policies to relevant government departments and other concerned bodies. to offer advice on good practice and the local action necessary to introduce and sustain better services.”

So just how qualified within four years of its formation was the IDC able to have acquired the knowledge and skills to provide the range of services and assume the status formerly held by the National Development Group? The short answer that they were definitely not – for the IDC publication ‘Living like other people’ did not challenge but strongly reinforced the views expressed in the King’s Fund Project Paper No. 50. But this did not deter the King’s Fund Centre from recognizing its limitations, for the unquestioning support of all the major charitable organisations regardless of the irrationality of its proposals gave it unjustifiable credibility.

So began the 30 year process of misleading carers and the general public into the sense of false complacency that the wellbeing of their adult children was in good and capable hands – a process that has continued and is still continuing today. If I should seem cynical in believing that the King’s Fund Centre was manipulating the main charities under the chairmanship of Brian Rix, let me point out the following.

The HQ of the IDC was based at the HQ of the KFC, 5 members of the KFC, including its spokesman, David Towell, were on the IDC Council, and a member of the KFC staff was highly commended for her contribution to editing the contents of the IDC publication ‘Living like other people’ (1985).

Even so, the full extent of the damage that the KFC intervention could do has yet to be exposed by the unwelcome involvement of yet other irresponsible and misguided individuals and one particular organization.



The Delusion of Inclusion (Continued)

Catch Up No.7

First posted on Facebook

28 February ·

The Delusion of Inclusion.(Continued)
David Towell. spokesperson, and former advisor to the King’s Fund Centre (KFC) , as a Fellow in Health Policy and Development, states with regard to ‘inclusion’ policies that:
“…the best current starting point is widely agreed amongst disabled people and their families to be the 2006 UNCRPD and the General Comments which seek to advance its implementation. This is clearly a 21st Century agenda for inclusion!”
The declaration of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is, to my mind, just a box ticking exercise full of great hopes and expectations. I wonder how many families have actually heard about it? It is being used to justify the ghastly mistakes that misguided ‘inclusion’ proponents and organisations such as the King’s Fund Centre group have inflicted upon innocent victims.
To rectify the damage already done there is need to go back, as I have already done, to identify the prime proponents for supporting a one-size- fits- all ‘inclusion’ policy. The King’s Fund Centre could not have gained momentum for its drive to phase out vital structured and specialist support under its own steam, for the publication initially passed without interest or obvious comment.
It is necessary to look closer at the organisations and individuals that gave the KFC credibility it did not deserve, and in this respect the first major culprits were all the charitable organisations that did not challenge proposals that were so obviously fundamentally flawed. At that time, even the ‘man in the street’, with limited knowledge, could see how irrational these proposals were.
But what was to follow will raise searching questions about the nature and validity of support that was received from the Independent Development Council for People with Mental Handicaps with the publication of : ‘Living like other people’ (1985).
More details to follow.
Does all this historical stuff really matter? Yes, because it has so far been covered up very effectively by the individuals, academics, and organisations that are responsible for the current policy debacle and would much prefer that it remains covered up regardless of the cost to the families concerned