Here to help with questions relating to learning disability and its impact on family carers
Charles Henley is a long-standing friend of Rescare, who several years ago, worried about trends in social care (based on his personal experience in the sector), decided to highlight the dangers of an over-reliance on the concept of ‘care in the community, citing specifically the consequent closure and dilution of services such as day-centres. Charles maintains a website ‘Learning Disabilities Problems‘, which he introduces as follows: ‘This site was originally set up to create awareness of the rapidly increasing decimation of Care in the Community and the need for unity of purpose whether carers required respite, residential or day care support.’ The site is well worth a visit.
In January 2018, Charles Henley prompted by the changes at Scope, wrote to the chair and other members of the All Party Parliamentary Group on Learning Disability His submission, analysing events in the recent past and considering future prospects, and suggesting a more active role for the APPGLD, was re-published on various social media outlets, and copied to Scope. We publish the text of in full below. Please now read on…
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 to other disturbing aspects of service provision and the vital need for caring and valued staff:
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 over the past few months with the government official responsible for Policy and Strategy, Dementia and Disabilities, Mr Gareth James, 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.
As a long term independent campaigner for people with learning disabilities I feel I must draw attention of all members of the All-Party Parliamentary Group on Learning Disability to a posting I have circulated across a number of outlets and copied to Scope.
Just reflecting upon a few of the painful events of the 2017 brings sharply into focus the trauma and suffering that has arisen from deficiencies in care in the community policies that show little sign of easing.
The fact that Scope are embarking on a new strategy goes a long way towards providing a rational explanation. Scope are victims of information deprivation denying it the opportunity to learn from past care in the community history. Regrettably, Scope are not pioneering, but repeating the fatal errors that were made 30 years ago. Ample evidence suggests that a spiral of decline set in motion at that time eventually culminated in the Winterbourne View scandal and the debacle that care in the community has become.
The efforts of a few misguided individuals with insular personal agendas, ensured a successful evolutionary policy introduced by humanitarian pioneers with immense hands-on experience in the 1960s/70s/80s has been airbrushed out of social history. Political correctness in the form of extreme ‘normalisation’ and ‘personalisation’ dogmas has ruled supreme.
The complexity of the immense task of meeting the residential and day care needs of people with learning disabilities has been grievously underestimated. It will remain so until a true record of how those in need of services and their carers have been insidiously misled for decades is exposed in the public domain.
There is an urgent need for the restoration of an equitable, achievable, rational, national strategy based upon the evolutionary process introduced and proving successful in the 1980s. There is need for an explanation of how irrational dogmas that defied common-sense remained unchallenged and became accepted as components of ongoing policies. There is need to question the competence and experience in this field of the advisers to whom the Government has turned for guidance since the real experts were phased out in the1980s. There is need to recognise that the complexity of the needs of this vulnerable section of our society is so vast it can only be met when addressed by suitably qualified, experienced, and insightful leaders. There is a need for a Minister dedicated to supporting such leaders.
Charities and influential academics have abysmally failed service users and their carers who are now facing a bleak outlook and are in despair. Members of the All-Party Parliamentary Group on Learning Disability are the only hope these people have that the 2014 Care Act will fulfil its promise to provide “Health and high quality care for all, now and for future generations”.
Charles is currently engaged in further correspondence with MPs within the APPGLD…