COMMONS

Care for people with learning disabilities report published

27 March 2015

Despite the agreed aim that people with learning disabilities should live and receive care in the community, there has been no closure programme for large mental health hospitals according to the Public Accounts Committee's report published Friday 27 March 2015.

Chair's comments

"The Winterbourne View scandal in 2011 exposed the horrific abuse of people with learning difficulties and challenging behaviour in a private mental health hospital. Concerns were also raised about a number of other institutions. As a result, the Government committed to discharging those individuals for whom it was appropriate back into their homes and communities.

However, since then, too many children and adults have continued to go into mental health hospitals, and to stay there unnecessarily, because of the lack of community alternatives. The number of people with learning disabilities remaining in hospital has not fallen, and has remained broadly the same at around 3,200.

In evidence to us, Sir Stephen Bubb, who carried out a review into the commissioning of services for people with disabilities, expressed frustration at the lack of decisive action to close hospitals and prevent people being put into institutions.

NHS England has acknowledged that it was indefensible to make so little progress against the commitment to discharge, as a result of which people had been badly let down. The continued operation of large mental health hospitals is incompatible with the Department’s model of care for people with learning disabilities and challenging behaviour.

It was refreshing that NHS England took responsibility for this lack of progress and has now committed to develop a closure programme for large NHS mental health hospitals, along with a transition plan for the people with learning disabilities within these hospitals, from 2016-17.

It is vital that the closure programme is matched by the necessary growth in high-quality community services. However, local commissioners have so far failed to deliver the high quality community-based care envisioned by the Department.

Even though the Department and NHS England now consider the institutional model of care to be completely inappropriate, local commissioners continue to place people with learning disabilities in mental health hospitals. Over a third of patients are in hospitals more than 50 kilometres from their homes, away from their family and friends, and too many people stay in hospital for too long. A fifth of people in hospitals and other institutions had been there for more than five years.

The Winterbourne View Concordat set out a strong presumption in favour of the use of pooled budgets to minimise overlaps between health and social services and save money. However only 27% of local areas have voluntarily pooled budgets. The Department should mandate the use of pooled budgets from April 2016.

Discharges from hospital are being delayed because funding does not follow the individual when they are discharged into the community. This acts as a financial disincentive for local commissioners who have to bear the costs and responsibility for planning and commissioning community services. Delaying discharge has the effect of institutionalising people, making their reintegration into the community more difficult.

Some local authorities’ reluctance to accept and fund individuals in the community will be exacerbated by current financial constraints. The Department should set out its proposals for 'dowry-type' payments from NHS England to meet the costs of supporting people discharged from hospital.

It is essential that the redesign of the system puts people with learning disabilities at the heart. Proper consideration must, therefore, be given not just to building capacity in the community, but also to enshrining in law patients’, and their families’, right to challenge the decisions taken, whether they are about treatment, admission to mental health hospital, or community care services provided – and ensuring they receive the advocacy support to enable them to do so."

Margaret Hodge was speaking as the Committee published its 51st Report of this Session which, on the basis of evidence from Sir Stephen Bubb, Chief Executive, ACEVO, David Congdon, Advisor to Challenging Behaviour Foundation and former Head of Campaigns and Policy, Mencap, Vivien Cooper, Chief Executive, Challenging Behaviour Foundation, Una O’Brien, Permanent Secretary, Department of Health, Jon Rouse, Director General, Social Care, Local Government and Care Partnerships, Department of Health, Simon Stevens, Chief Executive, NHS England, and Jane Cummings, Chief Nursing Officer, NHS England, examined care services for people with learning disabilities and challenging behaviour.

People badly let down

Following the Winterbourne View scandal in 2011, the Government committed to discharging inpatients with learning difficulties and challenging behaviour back to their homes and communities, where appropriate. However, during the four years since then, children and adults have continued to go into mental health hospitals, and to stay there unnecessarily, because of the lack of community alternatives. The number of people with learning disabilities remaining in hospital has not fallen, and has been broadly stable at around 3,200. We welcome the acknowledgement from NHS England that it was indefensible to make so little progress against the commitment, as a result of which people had been badly let down.

We recognise the complexity of the task in designing and commissioning a model of community based care and we are encouraged by the commitment to set out, within the next six months, a closure programme for large mental health hospitals, and to provide us with a transition plan for people within these hospitals, from 2016–17. It is essential that the patient is at the centre of the redesign. Proper consideration must, therefore, be given not just to building capacity in the community, but also to enshrining in law patients’, and their families’, right to challenge the decisions taken, whether they are about treatment, admission to mental health hospital, or community care services provided. Mindful of the way previous commitments have not been delivered, we urge our successors to examine progress again, in 18 months’ time.

£577 million on inpatients with learning disabilities

The Department of Health has lead responsibility for delivering the commitments made by Government, following the Winterbourne View scandal in 2011. In December 2012, the Government made a commitment that, if a person with a learning disability and challenging behaviour would be better off supported in the community, then they should be moved out of hospital by 1 June 2014. The Department sets the strategy to meet the Government’s commitment, improve quality and safety, enable change and measure and monitor progress.

In line with the Health and Social Care Act 2012, NHS England, mental health hospitals, and local health and social care commissioners determined how to meet the commitment. However, the Government failed to meet its pledge and the number of patients in hospital has been broadly stable over the last year (3,250 in September 2013 and 3,230 in September 2014). The NAO estimated that the NHS spent £557 million in 2012–13 on services for inpatients in mental health hospitals with learning disabilities and challenging behaviour. In addition, local authorities with adult social services responsibilities spent £5.3 billion (2013–14) on services for adults with learning disabilities.

Conclusions and Recommendations

The continued operation of large mental health hospitals is incompatible with the Department’s model of care for people with learning disabilities and challenging behaviour. Despite the agreed aim that people with learning disabilities should live and receive care in the community, there has been no closure programme for large mental health hospitals. The availability of places in mental health hospitals has reduced the pressure on local commissioners to revise their commissioning strategies to expand the capacity and capability of local community services. We were pleased to hear NHS England’s commitment to a closure programme for large NHS mental health hospitals, along with a transition plan for the people with learning disabilities within these hospitals, from 2016–17.

All the witnesses recognised that a closure programme required careful planning, management and consultation with all relevant stakeholders, and the expansion of community services before people with learning disabilities and challenging behaviour were discharged and hospitals closed. It is, therefore, vital that the proposed closure programme for mental health hospitals is matched by the necessary growth in high-quality community services. We look forward to receiving details of the closure programme, and a transition plan, within six months. Our recommendations below are designed to support this transition.

No data to support delivery

It is a fundamental failing that the Department currently lacks the data it needs to deliver its policy objectives for people with learning disabilities. Without an overall dataset on the population with learning disabilities and challenging behaviour, the Department is unable to oversee effectively a co-ordinated programme of care for people with learning disabilities and challenging behaviour. There are currently two separate measures for counting the number of people with learning disabilities in mental health hospitals which give different figures and which the Department cannot reconcile.

The Department accepts that its data on the number of people with learning disabilities in mental health hospitals is not good enough. It believes the quality of the data has improved since 2011–12, when its data was "absolutely non-existent". It still lacks up-to-date information and it does not collect data on those who are receiving treatment services in community placements, those who are in prison, those who have other contacts with the criminal justice system, or those readmitted to hospital.

Recommendation: The Department should mandate the timely collection of a consistent dataset on people with learning disabilities and challenging behaviour, to inform effective planning and management of their care, and to monitor their movements through health services, social services, and the criminal justice system.

Current commissioning practice for people with learning disabilities is not delivering the high-quality community-based care envisioned by the Department in its model of care. The old model was one of institutional care. However this is no longer what NHS England, working with the Care Quality Commission, will accept. Although there will still be the need for some inpatient provision, the Department and NHS England now consider the institutional model of care to be completely inappropriate. The new model will have a much greater focus on community services provision and building the capacity in the community to support people, as well as preventing the need for admission in the first place.

NHS England needs a fundamental redesign of the way that services are commissioned to move away from institutional care. Local commissioners continue to place people with learning disabilities in mental health hospitals. Over a third of patients are in hospitals more than 50 kilometres from their homes and too many people stay in hospital for too long. A fifth of people in in-patient settings had been there for more than five years. NHS England knows that many patients and families want to be closer to home, cared for in the community and supported to live as normal a life as possible. Delaying discharge also has the effect of institutionalising people, making their reintegration to the community more difficult.

Recommendation: NHS England should use its commissioning framework to require local commissioners to comply fully with the Department’s stated aim to promote community based services rather than hospital admissions for people with learning disabilities.

Recommendation: The Department should set out the responsibilities on local health and social care commissioners to put in place commissioning strategies which ensure an adequate provision of the range of community services and housing required by people with learning disabilities and challenging behaviour.

The lack of pooled health and social care budgets exacerbates the inadequate levels of community services, resulting in unnecessary admissions of people with learning disabilities to mental health hospitals, and delays in their discharge back to their community. Local commissioners have not yet developed health, social and housing services of good enough quality to meet the needs of people with learning disabilities and challenging behaviour, if they are to be properly supported in the community. Without this capacity in the community there may often be no alternative to admission to a mental health hospital. In Salford, often cited as a beacon of good practice, a pooled budget supports integrated health and social care management, with a team committed to keeping people out of mental health hospitals by supporting them in the community.

The Winterbourne View Concordat set out a strong presumption in favour of the use of pooled budgets to minimise health and social service overlaps and save money. However only 27% of local areas have voluntarily pooled budgets. This is why it is right that the NAO and Sir Stephen Bubb recommended that pooled budgets should be mandated. The Department could do so through the annual NHS Mandate, which would not be revised for implementation until April 2016. This would require greater joint planning and provision from local commissioners.

Recommendation: The Department should mandate the use of pooled budgets for people with learning disabilities and challenging behaviour from April 2016, to build improved community services through joint working by local health and social care commissioners.

Discharges are being delayed because funding does not follow the patient. The NHS meets the cost of most people with learning disabilities in mental health hospitals. However the funding to meet a patient’s cost of care does not follow them when they are discharged from hospital. Local commissioners face the cost of planning and commissioning bespoke community services each person will require when discharged. This financial disincentive results in delays to people’s discharge from hospital, while complex negotiations take place between NHS England, clinical commissioning groups and local authorities, to develop a joint-funding arrangement for a person’s community placement.

Some local authorities’ reluctance to accept and fund individuals in the community will be exacerbated by current financial constraints. Unlike previous moves to support care in the community, there is no 'dowry-type' payment that goes with the individual to support transfer to the community.

Recommendation: The Department should identify how funding can follow the patient to meet the costs of new community services to keep people out of hospital. It should also set out the arrangements for its proposed 'dowry-type' payments to local commissioners from NHS England to meet the costs of supporting people discharged from hospital.

People with learning disabilities, and their families, have too little influence on decisions affecting their admission to mental health hospital, their treatment and care and their discharge. We heard about the importance of strengthening the rights of people with learning disabilities and their families to challenge decisions made about their treatment and care. Unfortunately, it is still too difficult to challenge the decision by medical and mental health professionals to Section a patient under the Mental Health Act, to challenge a decision to admit the patient to a mental health hospital which is a long way from their family, or to propose alternative treatment and care arrangements.

The Department and NHS England both accepted the need for a more rights-based system. The Department said that, because of the inequity in power between institutions and families of people with a learning disability, the next step would be to enshrine rights in law, and that this would be covered in a Green Paper.

Recommendation: The Department should strengthen the legal rights of people with learning disabilities and their families, to enable them to challenge decisions on the location and nature of their treatment and to ensure that they receive advocacy support in doing so.

Further information

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