Conclusions and recommendations
1.There is much to be done to achieve targets to reduce the number of beds in mental health hospitals for people with a learning disability. There are stark differences in the numbers of beds in mental health hospitals in different local areas which means there needs to be a local approach to reducing the numbers of these beds. As a result, the Department and NHS England have created 48 partnerships formed of health and social care organisations across England to reduce beds locally. In 2016–17, these local partnerships reduced the numbers of beds in mental health hospitals by more than 136, which was the target for the year. However, there is a long way to go as partnerships need to reduce bed numbers by between 900–1300 beds across England by 2019. NHS England and local government acknowledge the challenges but believe that they are still on track to reduce the numbers of beds as planned.
Recommendation: Starting in July 2017, NHS England should update the Committee annually on its progress to reduce the number of beds in mental health hospitals.
2.Care and treatment reviews are not working as they should. Care and treatment reviews are important to help people move out of mental health hospitals and to prevent them being admitted in the first instance. NHS England policy is that everyone with a learning disability in a mental health hospital should have a review every six months. However, as of December 2016, only 39% of people in mental health hospitals have had a review in the last six months. We have also heard criticism about a lack of involvement by senior or experienced clinicians. There is some good news in that the number of people who have not had care and treatment reviews has decreased from 47% in January 2016 to 27% in December 2016, with NHS England giving the latest figure of 20.5% as of February 2017. NHS England has refreshed its policy on how care and treatment reviews are conducted. As a result, it is revising the policy for care and treatment reviews which may lead to more frequent reviews for children, and fewer reviews for people who are in secure settings or are under restrictions from the Ministry of Justice.
Recommendation: NHS England should report to the Committee in six months on the effectiveness of its refreshed care and treatment policy. This report should reflect feedback from families and people with a learning disability who have had a review.
3.Money is not yet following the patient to pay for support in the community. Money needs to move with the patient as they leave mental health hospitals to pay for their support in the community. There is a risk of unfunded pressures on local authorities if money does not move with the patient. In January 2017, NHS England agreed how money will move within the NHS for a specific group of patients: those who have been in specialised commissioning mental health hospitals for longer than 5 years as of 1 April 2016. This money will then need to move from the NHS to local authorities, which NHS England told us had started to happen. However, at the time of our evidence session, just £1 million had moved from specialised commissioning to other areas of the NHS out of an estimated £10.8 million that should have been released. In part, this is because there can be a time lag when trying to reduce the number of beds in some mental health hospitals caused by the type of contract where beds are commissioned as a block. There is a real sense of frustration from the Challenging Behaviour Foundation, a charity working on behalf of people with a learning disability, at how slowly money is moving.
Recommendation: NHS England should set out how its new arrangements will work in practice to move money from health to local authorities more quickly.
4.Proposed changes to the local housing allowance pose a real risk to the key aim of the Transforming Care programme to move people into community based care. Proposed changes to the local housing allowance may leave many people with a learning disability without enough benefits to pay the higher rent they are likely to face for specialist accommodation. The proposed change has also caused uncertainty for organisations that provide accommodation with support. One estimate is that, during 2016, these organisations put on hold 80% of planned supported housing while they assessed the impact of the proposed changes. The Department of Health is discussing this problem with the Department for Communities and Local Government and we note its commitment to resolve the issue.
Recommendation: We look to the Department to keep its commitment to act as a champion within Whitehall for people with a learning disability, and secure the right outcome for them on the issue of supported housing. It should work urgently with the Department for Communities and Local Government to resolve the matter by the end of July 2017.
5.People with a learning disability and their families are not adequately supported to be advocates for their care. We heard how the involvement of families is vital to the support for people with a learning disability as they act as essential advocates. Families can be very effective in putting on pressure to bring about changes, and getting a better service for people with a learning disability. There is consensus that better outcomes result from family involvement and that families and advocacy services should be supported. Some local authorities are very good in supporting families to be engaged with their loved one’s support or providing advocacy services for people who do not have families who can look after their interests, but it is variable.
Recommendation: NHS England should set out how it will ensure that patients and families are supported to advocate for themselves or have access to effective advocacy.
6.People with a learning disability who live in the community have patchy access to health care and limited opportunities to participate in the community, for example, by having a job. Access to GPs can act as a gateway to other health care services so we are very concerned that only 23% of people with a learning disability are on GP registers and flagged as having a learning disability. There is also considerable local variation in the numbers of people having annual health checks by their GP, from 6.3% in East Sussex to 59% in Hackney. Levels of employment among people with a learning disability are too low, with an overall rate of 5.8%, ranging from 3% to 20% across different local areas. While the Department has the policy lead for people with a learning disability, responsibility for their support spans across government. There are limited measures to assess the quality and impact of health and social care support: most measures are of activity rather than outcomes. We heard from charities involved in supporting people with a learning disability that most people want the same things as everyone else: a family, friendships, a job. We understand that some of these are difficult things to measure and the Department told us of work it is doing with the University of Kent to develop more meaningful measures of the quality of life for people with a learning disability.
Recommendation: The Department should set out a cross-government strategy for improving access to health care and opportunities to participate in the community, including employment, as well as how it will measure the effectiveness of this strategy.
24 April 2017