A short history of disappointment

I put this post together a while ago but I'm worrying now that it's too despairing and nihilistic, as it maybe implies that meaningful change is impossible. I don't think I think this, but that would be a blogpost in itself, which I will spare you. Anyway, here it is...

This post is simply a selection of quotes from official government inquiries, policy statements and reviews over the past 40 years or so. See if you can spot any themes…

(quote from Fernando Pessoa, The Book of Disquietude)

“As happened so often in the field of lunacy reform the early efforts of enlightened philanthropists in providing ‘schools’ gave way to the building of remote prison-like establishments to which the outcasts of the Victorian moral code could be consigned.” (HM Government, 1979)

“Gradually throughout the 1920s and 30s the emphasis shifted from containment to active care and by the outbreak of the second world war such features as open wards, community care, mental health social workers, special schools and occupation and training centres were all regarded as appropriate components of the mental handicap picture. Sadly the staff and accommodation shortages imposed by the war meant ‘the return of the locked door, of inactivity, of isolation.’” (HM Government, 1979)

“It seemed that the momentum created by the report of the 1957 Royal Commission was not to be dissipated in the way of so many previous efforts at reform, but the emphasis was on ‘hardware’ rather than ‘care’… Sadly these plans proved to be over optimistic and escalating costs combined with recruitment difficulties meant that improvements were slow to materialise.” (HM Government, 1979).

“In 1971 the expected policy statement was issued in the form of a White Paper – ‘Better Services for the Mentally Handicapped’. The policies outlined in the paper were a direct development from the proposals of the Royal Commission of 1957 but with specific targets (involving a shift in emphasis from hospital to community care to be achieved in the next 15-10 years) set for local and hospital authorities… But the task proved more difficult than had been expected and the onset of the local authority and NHS re-organisations meant that this exercise in co-operation had to be replaced by a new form of joint planning which is still in the process of development.” (HM Government, 1979).

“Achievements since 1971 were reviewed by the Secretary of State for Social Services in a speech to the National Society for Mentally Handicapped Children in February 1975. Inevitably there had been some disappointments to place alongside the undoubted progress which had been made; the two main areas of concern were the slow progress in providing local authority homes and the continued survival of old fashioned attitudes towards mentally handicapped people. The first of these problems was a question of funds and there was some hope of improvement; the second problem was more complex”. (HM Government, 1979).

“The main conclusions of the Report are summarised in Chapter 10. I strongly endorse the final conclusion – that we need to build a pattern of local services and that for this the basic principles of the 1971 White Paper hold good. These principles have recently been re-stated in the Model of Care set out in the Report of the Committee chaired by Mrs Peggy Jay. In the present economic situation we shall not be able to make progress as fast as we would all like. But we must use the resources available to build, as quickly and ingeniously as we can, the services needed.” (Foreword by Secretary of State for Social Services; Department of Health and Social Security, 1980).

“In fact, almost every conceivable approach has been tried in the case of people with behaviour disorder, ranging from national units (special hospitals), through interim regional secure units and locked wards in hospitals to complete integration. As might be expected from what has been said above, none of these approaches has been wholly satisfactory, but in addition to the difficulties mentioned in previous paragraphs, some further disadvantages of special units have become apparent. Firstly, the existence of special units tends to make staff in ordinary units less willing to care for people with even mild disorders of behaviour. With a wide range of provision the opportunities for saying that somebody ought to be somewhere else are increased still further. Secondly, it has proved difficult to get people out of special provision once they have been admitted even if they no longer need to be there. For example, special hospital staff have great difficulty in finding hospitals which are willing to accept special hospital residents who no longer require the degree of security provided there. Clearly, further work is needed on all these matters.” (Department of Health and Social Security, 1980)

“Present uncertainty about the availability of resources inevitably dominates thinking about future policy on services for the mentally handicapped. We believe that further thought should be given to how limited resources can best be deployed, including consideration of the relative contribution of health and social services and the voluntary effort and the voluntary and private sectors can be expected to play” (Department of Health and Social Security, 1980)

“Many of the aims of the 1971 White Paper have been achieved. Very few large institutions remain and there are no children in long-stay hospitals. Services in the community have expanded and developed, and more people with learning disabilities are in work. There are active self-advocacy and citizen advocacy movements and the voices of people with learning disabilities are heard more clearly. But more needs to be done. Too many people with learning disabilities and their families still lead lives apart, with limited opportunities and poor life changes. To maintain the momentum of change we now need to open up mainstream services, not create further separate services.” (Department of Health, 2001).

“Delivering the Government’s ambitious plans for people with learning disabilities will take time, as real change always does. Improving the lives of people with learning disabilities is a complex process which requires a fundamental shift in attitude on the part of a range of public services and the wider local community. This will not be easy. It needs real leadership at both national and local levels, supported by a long-term implementation programme with dedicated resources and on-going action to monitor delivery.” (Department of Health, 2001).

“Valuing People established a number of bodies and mechanisms to help implement its proposals but the biggest criticism of Valuing People has been the failure to deliver it in many areas. The top priority is to deliver the objectives in this strategy so that the Valuing People vision becomes a reality” (HM Government, 2009).

“The scandal that unfolded at Winterbourne View is devastating. Like many, I have felt shock, anger and deep regret that vulnerable people were able to be treated in such an unacceptable way, and that the serious concerns raised by their families were ignored by the authorities for so long. This in-depth review…is about the lessons we must learn and the actions we must take to prevent abuse from happening again… Yet Winterbourne View also exposed some wider issues in the care system. There are far too many people with learning disabilities or autism staying too long in hospital or residential homes, and even though many are receiving good care in these settings, many should not be there and could lead happier lives elsewhere. This practice must end.” (Ministerial foreword, Department of Health, 2012).

“The review has highlighted a widespread failure to design, commission and provide services which give people with support they need close to home, and which are in line with well established best practice. Equally, there was a failure to assess the quality of care or outcomes being delivered for the very high cost of places at Winterbourne View and other hospitals.” (Department of Health, 2012).

“It is also clear that we have not made as much progress as we intended, which is not good enough. The commitment to transfer people by 1 June 2014 from inappropriate inpatient care to community-based settings was missed. This commitment is still right but the process is clearly more complex than we anticipated and the system has not delivered what we expected to achieve when Transforming Care was published.” (Department of Health, 2014).

“But, despite all of this, the scale or pace of change for individuals that we all wanted to see has not yet happened. In fact, in terms of admissions into inpatient units and length of stay, it appears to be business as usual. I have met many families whose stories powerfully illustrate the need for change, who have shown me how damaging it can be for people when hospitals are misused and become people’s homes. While recognising the complexities, I have been disappointed that some commissioners have failed to grasp and act on the urgency of putting in place suitable community provision. We have to go further. We want to consider how we can make sure that the rights, incentives, responsibilities and duties in the system ensure that change is delivered everywhere and no-one can fall through the gaps any longer.” (Ministerial foreword, Department of Health, 2015a).

“All too often the rights of people with learning disabilities or autism or mental health conditions have not been respected fully. I recognise that since the previous Government’s response to what happened at Winterbourne View, there have been some improvements, but they’ve not gone far enough or been made fast enough… Our aim is that people lead as fulfilling and independent lives as they can, and that they have the support to live independently when possible. This requires a step change. Services, and wider society, should first and foremost see the person and their potential.” (Ministerial foreword, Department of Health, 2015b).

(quote from Fernando Pessoa, The Book of Disquietude)

[Update: some dates corrected thanks to Daniel Marsden]

References

HM Government (1979). Report of the Committee of Enquiry into Mental Handicap Nursing and Care (Chairman Peggy Jay): Volume I. London: Her Majesty’s Stationery Office.

Department of Health and Social Security (1980). Mental handicap: Progress, problems and priorities. A Review of Mental Handicap Services in England since the White Paper “Better Services for the Mentally Handicapped”. London: Department of Health and Social Security.

Department of Health (2001). Valuing People: A new strategy for learning disability for the 21^st century. London: Department of Health.

HM Government (2009). Valuing People Now: A new three-year strategy for people with learning disabilities. London: Department of Health.

Department of Health (2012). Transforming care: A national response to Winterbourne View Hospital. London: Department of Health.

Department of Health (2014). Winterbourne View: Transforming Care two years on. London: Department of Health.

Department of Health (2015a). No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions. London: Department of Health.

Department of Health (2015b). Government response to No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions. London: Department of Health.