Out of sight for too long By Helen Killaspy People with complex mental health problems are one of the most marginalised groups in society and among the least able to advocate for themselves. Centre for Mental Health’s briefing report on long stay mental health rehabilitation facilities has identified a number of worrying issues related to the quality of care they offer. Most of these are a direct consequence of years of disinvestment in local rehabilitation services and a historic lack of policy to guide NHS commissioners and trusts in what is required to support successful recovery for this group. There is good evidence that when local mental health rehabilitation services are available, around two-thirds of people with complex needs are supported to achieve sustained, successful community living, without the need for further readmissions to hospital (Killaspy et al., 2016). The most effective mental health rehabilitation services are organised into a whole system care pathway, that includes specialist inpatient care provided by the NHS and supported accommodation provided by the third sector. Around 80% of referrals into this pathway are people in acute mental health wards who have not recovered adequately to be discharged, with the remainder coming from secure (forensic) mental health services. The majority of this group will have been diagnosed with a major mental health problem such as schizophrenia and experience severe symptoms that have not responded to the usual first or second line treatments. As well as hallucinations and delusions, other troublesome aspects which are often present include problems with motivation and poor organisational skills. Many will also experience additional problems, including other mental health symptoms and substance misuse, which further complicate recovery. Many also have serious physical health problems. This level of complexity affects around 10-20% of people newly diagnosed with psychosis, a figure which has remained stable despite the investment in effective early intervention services over recent years. The ongoing need for specialist services for people with more complex needs therefore remains, yet rehabilitation services have received almost no mention in mental health policy over the last two decades. It doesn’t take extensive health economic analyses to conclude that investing in a local rehabilitation care pathway makes good financial sense. Mental health rehabilitation services are expensive because providing appropriate treatment and support to people with such a high level of needs takes time and requires skilled multidisciplinary teams. The expected length of stay in an inpatient mental health rehabilitation unit is at least 12 months and it can often take longer than this to find the right combination of interventions to stabilise symptoms and assist the person to learn or relearn skills and gain the confidence to be able to leave hospital. Usually, the individual will then move to highly supported accommodation, graduating to more independent settings over subsequent years as their recovery progresses. Over a five year period, around two thirds of individuals will move forwards along this pathway, without the need for hospital readmissions (Killaspy and Zis, 2013). Given that most of this group will have been unwell for over ten years and had multiple readmissions to hospital prior to accessing rehabilitation, this is no mean feat; and it doesn’t take extensive health economic analyses to conclude that investing in a local rehabilitation care pathway makes good financial sense. However, in the context of economic recession, a major policy void and commissioning cycles that are based on annual budgets, it is perhaps unsurprising that local mental health rehabilitation services have been vulnerable to disinvestment. In 2009 there were on average two inpatient rehabilitation units in each NHS mental health trust in England (over 130 in total across the country). A survey by the Rehabilitation Faculty of the Royal College of Psychiatrists in 2015 identified just 82, representing a reduction of around one third. Centre for Mental Health’s briefing paper reports that there are currently 47 NHS Trusts and 74 private sector organisations providing inpatient rehabilitation services. The independent sector has simply responded to market forces, expanding its inpatient rehabilitation services as the gap in local services has opened up. The consequences of this are stark. People with complex mental health needs haven’t miraculously disappeared, but in areas that have cut their rehabilitation services, they are now transferred out of their local area for treatment in the independent sector. Many independent sector providers describe themselves as offering ‘locked rehabilitation’ (a term without official specification which seems to contradict the core values and main aim of rehabilitation). What we are seeing is evidence of the ongoing exportation of people with the most severe mental health problems into a system that may well confound rather than support their recovery. This is not a new problem. Concerns about the rise in the use of out of area treatments for people with complex mental health needs were first raised fifteen years ago, with the phenomenon dubbed ‘the virtual asylum’ (Poole et al, 2002). Their tendency to undermine recovery through dislocating the person from their family, community and local care team were noted with alarm, along with the use of unnecessarily restrictive regimes that lack a rehabilitative ethos and the fact that they are often associated with longer stays than admissions to local services, due to the inherent difficulties in facilitating community access and discharge planning from afar (Ryan et al, 2004). A Freedom of Information enquiry by the Royal College of Psychiatrists a few years later showed that out of area treatments for this group cost around two-thirds more than local rehabilitation services (Killaspy and Meier, 2010). Similar concerns have been identified in the Centre’s new report. It also notes that disinvestment in local rehabilitation services creates a negative cycle where the use of out of area treatments is reinforced by the eradication of local expertise in the management and support of people with complex needs. In other words, what we are seeing is evidence of the ongoing exportation of people with the most severe mental health problems into a system that may well confound rather than support their recovery. This process has already resulted in an unacceptable ‘postcode lottery’. Why should a person who has the bad luck to develop a complex mental health problem be unable to access appropriate treatment locally and be sent miles away from their family and friends, to a ‘locked’ rehabilitation unit, without a court directing that their risks require their treatment to be in a secure setting? This is surely a gross abuse of those individuals’ human rights and a clear breach of the ‘least restrictive’ treatment principle. Over the last few years a number of efforts have been made to reverse this process, most notably perhaps the decision by the Department of Health to commission an expert group to develop a toolkit for mental health commissioners to help them minimise the use of out of area treatments (Ryan et al, 2011). Unfortunately, the changes to government and commissioning structures that followed its publication completely impeded its implementation. The Centre for Mental Health briefing makes a number of simple, clear and feasible recommendations as to how this unacceptable situation can be addressed by policy makers and commissioners to ensure that every person with complex mental health needs has access to appropriate specialist rehabilitation services as close to home as possible. People with complex mental health needs deserve to be treated fairly and it is time that we reversed the ‘out of sight, out of mind’ culture that has blighted their access to appropriate treatment and support for so long. References Killaspy, H., Meier, R. A Fair Deal for Mental Health Rehabilitation Services. The Psychiatrist, 2010; 34(7): 265-267. Killaspy, H., Zis, P. Predictors of outcomes of mental health rehabilitation services: a 5-year retrospective cohort study in inner London, UK. Social Psychiatry and Psychiatric Epidemiology, 2013; 48 (6): 1005-1012. Killaspy, H., Marston, L., Green, N., Harrison, I., Lean, M., Holloway, F., Craig, T., Leavey, G., Arbuthnott, M., Koeser, L., McCrone, P., Omar, R., King, M. Clinical outcomes and costs for people with complex psychosis; a naturalistic prospective cohort study of mental health rehabilitation service users in England. BMC Psych, 2016; 16:95 Poole, R., Ryan, T., Pearsall, A. The virtual asylum. British Medical Journal, 2002; 325-349. Ryan T., Pearsall A., Hatﬁeld B., Poole, R. Long term care for serious mental illness outside the NHS: a study of out of area placements. Journal of Mental Health, 2004; 13(4): 425–429 Ryan T, Davies G, Bennett A, Meier R, Killaspy H. In Sight and In Mind: A Toolkit to Reduce the Use of Out of Area Mental Health Services. National Mental Health Development Unit, Pub. Royal College of Psychiatrists, London; 2011.