Public Accounts Committee inquiry on care for people with learning disabilities

Written evidence from the Independent Mental Health Services Alliance (IMHSA)

 

Executive summary

The Independent Mental Health Services Alliance (IMHSA) is supportive of NHS England’s Transforming Care Programme and efforts to ensure people with learning disabilities are cared for in the most appropriate setting for their needs.

The independent sector has a unique national perspective on service provision and demand, and therefore has a valuable role to play in supporting the programme. More use should be made of this in terms of sharing best practice and defining good care.

While IMHSA supports the programme, it is important system reforms do not become fixated on moving service users into the community and closing hospital beds at the expense of service user choice and ensuring access to the most appropriate care.

While community-based care is the most appropriate type of care for many people, for some people with learning disabilities, particularly those with especially complex needs such as mental health difficulties, more specialist, inpatient care is required.

This includes people with learning disabilities who have committed offences and require supervision to prevent re-offending. These individuals are in a secure setting as an alternative to prison, not as an alternative to community care. This should be acknowledged as part of the Transforming Care Programme.

In addition, bed closures and the moving of service users into the community cannot be achieved if appropriate, quality community settings and funding are not available. This must be addressed before Transforming Care can be a success.

Service users and their families/carers must be given the information they need and be involved in detailed discussions about plans to move a service user to another setting. Ultimately any decision should be based on a service user and their family’s wishes. For some service users, this has been a source of significant distress. It is essential that service user choice and stability is not compromised by the system reforms.

It is essential that progress with the Transforming Care Programme is made without compromising on quality. There must be a strategic approach to developing and providing individual support packages based on a person’s needs not solely on a preferred setting type.  

The independent sector is a willing partner to supporting a more joined up approach to services, ensuring people with learning disabilities can access the right care and support when they need it.

 

Supporting information

IMHSA’s members work hard to provide local, high-quality and cost-effective services to people with learning disabilities, including those with mental health difficulties. Our focus is ensuring that service users can access a timely, tailored pathway of care and support that enables positive outcomes.

IMHSA is committed to working in partnership with all stakeholders to improve patient outcomes and access to care. A joined-up approach to care for people with learning disabilities is vital, to ensure they can access the best possible support in a setting that is most appropriate for their needs.

Transforming Care Programme

IMHSA is very supportive of NHS England’s Transforming Care Programme and the focus on ensuring people with learning disabilities who are cared for in hospitals and secure settings, who could be better supported elsewhere, are moved into more community-based settings.

IMHSA is represented on NHS England’s provider forum and we are committed to working with the Transforming Care Team to help improve the type of care available to people with learning disabilities. We believe the independent sector, which has a unique national perspective on service provision and demand, which localised NHS regions may not necessarily have, has a valuable role to play in this work. More use should be made of this in terms of sharing best practice and working to define what good care looks like. All the Transforming Care Partnerships must work with local independent sector providers to ensure the sector’s expertise is properly considered in local delivery of the programme.

While IMHSA supports the aims of the Transforming Care Programme it is important that the programme does not become fixated on the goal of moving people with learning disabilities out of inpatient, secure settings and into the community. While community-based care is the most appropriate type of care for many people with learning disabilities, it is not the right care for everyone. For some people with learning disabilities, particularly those with especially complex needs such as additional mental health difficulties, more specialist care and support is required to meet their needs and ensure they can live positive lives. Often this can only be provided in an inpatient setting.

A blanket approach to service provision in the community is as equally inappropriate as placing all people with learning disabilities that require additional care and support in inpatient settings. It is essential that individual needs are properly assessed and a placement decision made based on those, not an arbitrary goal to move a target percentage of people with learning disabilities into the community and to close inpatient beds. If an inpatient setting can best meet someone’s needs that is where they should be placed.

In addition, it is also important that due consideration is given to the legal reasons for some people with learning disabilities being resident in a hospital setting. Some people with learning disabilities are in this type of setting as an alternative to being in prison, not as an alternative to living in the community. While community care is appropriate for some people with learning disabilities, others pose a serious risk to their communities and have committed significant offences. These individuals require constant supervision to prevent re-offending and the appropriate legal frameworks do not exist to support them outside of a hospital setting. This needs to be acknowledged and taken into account as part of the Transforming Care Programme.

It is also important to note the reasons behind, as the National Audit Office (NAO) report highlighted, the limited confidence in the programme’s ability to achieve the number of bed closures planned and the removal of people with learning disabilities from hospital settings.

The NAO noted that a lack of community infrastructure and an inability to discharge patients is a cause of concern. IMHSA agrees with this position; while the aim of moving people with learning disabilities into the community as appropriate is positive, this can only be achieved if there are high quality community settings available. The independent sector is a willing partner for the NHS and local authorities in the development of new, appropriate, services where they are needed, but this can only be undertaken if sufficient funding is provided.

As with the wider mental health sector, community support is limited and this is creating delayed discharges of patients from inpatient settings. IMHSA members have experienced a number of occasions where patients cannot be stepped down from inpatient care because either the required community setting or CCG funding is not available. This prevents patients moving down the care pathway as well as blocking access to inpatient care for those who need it.

In addition, it is also essential that service users and their families/carers are given the information they need about the Transforming Care Programme and are involved in detailed discussions about any plans to move a service user to another setting. Ultimately any decision should be based on a service user and their family’s wishes. They may not want to end a placement in a hospital setting and someone should not be forced to move into a different setting just because that is what NHS England policy mandates.

A number of IMHSA members’ service users and their families/carers have been very concerned about the impact of the reforms and members have had to allay concerns that their settings are closing down. This has been a source of significant distress for some service users because they feared being forced to leave somewhere they view as their home and do not want to move into a new setting. It is essential that service user choice and stability is not compromised by the system reforms.

Lastly, it is important that progress is made without compromising on quality. There must be a strategic approach to developing and providing individual support packages that must focus on a person’s needs not solely on a preferred setting type. The independent sector is a willing partner to supporting a more joined up approach to services, ensuring there is a robust understanding of what good care and support for people with learning disabilities looks like and ensuring they can access this in a timely manner.

 

About the Independent Mental Health Services Alliance (IMHSA)

The Independent Mental Health Services Alliance (IMHSA) is a group of leading independent providers of mental health services as well as care for people with learning disabilities.

IMHSA’s members deliver a wide range of high quality services to adults and children and young people. The independent sector works hard to ensure that patients can access a timely, tailored pathway of care and support.

IMHSA is committed to working in partnership with all stakeholders to improve patient care and ensure that all people with mental health difficulties and learning disabilities can access appropriate, high quality services when they need them.