The forgotten few of the Forward View

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By Robin Miller (Deputy Director, HSMC)

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Ask someone who works in health care to remember the ‘nine must-dos’ of the Five Year Forward View  and the chances are they will mention one or more of - sustainability and transformation plans, various new models of care, strengthening of general practice, and possibly improving access to mental health services. They are unlikely to remember that one of the top NHS priorities for this period was to transform care for the small population of people with a learning disability who receive in-patient treatment connected with behaviour that challenges. Similarly the associated acronyms of TCPs (Transforming Care Partnerships), BRS (Building the Right Support) or CTRs (Care and Treatment Reviews) will provide most people with a whole new set of three letter policy abbreviations.

But improving the lives of this small population of people with a learning disability and/or autism and their families is indeed one of the nine top priorities. Their inclusion is both testament to NHS England taking a whole population perspective to the Forward View and a legacy of the terrible events at Winterbourne View. The roots of this tragedy were grown in the 1990s and 2000s when long-stay campuses for people with a learning disability were closed. Most of their residents were given the opportunity to move into smaller residences within local communities and some were able to take up individual tenancies. However some people with complex needs were not rehoused and were instead moved to or left in NHS or private facilities providing ‘assessment and treatment’. These long-term inpatients have been joined by a steady stream of people for whom there is not sufficient community support to maintain them with their family or in local placements. A third access point is through the courts. On average there are about 3,000 people within such units at any one point with the majority experiencing admissions of two years or more.

Assessment and treatment facilities are often far from people’s homes. This leads to physical separation from their families, friends and communities and can lead to people feeling disconnected from those who matter most to them. Before Winterbourne View, commissioners did not always remain sufficiently in touch with such people’s care leading to inadequate monitoring of the quality of placements, insufficient co-ordination between commissioners, and a lack of momentum in arranging people’s return to their local area. Winterbourne View is not the only example of care in these units not being the standard that we would expect. Leading charities like the Challenging Behaviour Foundation and Mencap describe failures including people being over-medicated and facing practices like regular restraint, long periods of isolation and even physical assault.

People with a learning disability are one of the most disadvantaged groups in our society. Poverty, poor health, abuse, and denying of basic human rights continue to be inflicted upon them. Those with autism are also misunderstood, with gaps in services and an overall lack of resources leaving individuals and their families having to manage alone. For people with behaviour that challenges such statistics only get bleaker. Enabling people to remain in their community, to avoid the disruption and anxiety caused by admission whenever possible, and to have a timely and coordinated discharge are essential components to a fairer future. The aspirations of the Building the Right Support Programme may therefore not be widely recognised but are of major importance. We must hope that this time we are able to make a good quality of life a reality for all those concerned.

NB. Dr Robin Miller is Deputy Director of HSMC and academic lead for the national evaluation of the Building the Right Support Programme.