Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 5: Complex Care – Coming Home

What we have heard

We know that some people with learning disabilities who have more complex care needs spend a longer time in hospital than is medically necessary often due to a lack of appropriate community support. This is called delayed discharge. We also know that some people are living away from their home, communities and families even though they did not choose to. This is often called living in an inappropriate out-of-area placement.

We know that this is completely unacceptable and we want to change it. We have been working to improve this for people with learning disabilities and complex care needs and this is often called the Coming Home programme.

We have heard from people with learning disabilities and complex care needs that they want to be supported to live in their own homes and communities, and want to be involved in the decision making process around this.

We have heard that there are existing barriers within local areas and public bodies, including local authorities, Integration Authorities and Health Boards, which sometimes make it difficult for action to be taken in order for people with learning disabilities and complex care needs to live at home.

What did LEAP think?

• LEAP members were concerned about the number of people, especially those with learning disabilities, who experience delayed discharge from hospital and felt that these people's rights were not being upheld and that they were being let down by public bodies.
• One LEAP member said that they know from experience about the staffing challenges that the NHS faces and that increasing accountability through the LDAN Bill could help with this.

Where do we want to get to?

• People with learning disabilities who have complex care needs, and the people supporting them, know that their choices and wishes are at the heart of the decision making process.
• People with learning disabilities, who have complex care needs, know that they are supported by the best possible services to enable them to lead high quality lives with their family and their community, where they experience personalised support in their own home, consistent with international human rights standards.
• Local staff (e.g. Learning Disability services) know who is in hospital or in an out-of-area placement (or at risk of being admitted to hospital or placed in an inappropriate out-of-area placement) and what actions are required to best enable them to live in a home and community of their choice.
• There is full accountability for people with learning disabilities and complex care needs to ensure that appropriate, person-centred services are delivered by the public bodies who have a duty to provide them.

What happens now?

We are currently carrying out work to address these issues. Alongside people with lived experience, COSLA and key stakeholders, we are progressing the programme of work called Coming Home which aims to significantly reduce delayed discharge and inappropriate out-of-area placements for adults with learning disabilities and complex care needs. The work is based on the recommendations set out in the Coming Home Implementation Report ('the Report').^[181]

The key recommendations in the Report said that the Scottish Government should:

• Introduce a Dynamic Support Register to improve planning and monitoring of those who are admitted to hospital and those in inappropriate out-of-area placements
• Establish a National Support Panel that provides professional advice to Health Boards, Integration Authorities and local authorities and provides recommendations on how to resolve complex cases
• Establish a Peer Support Network for professionals from Health and Social Care Partnerships, clinicians, commissioners, social care providers, housing organisations, local authorities, family members, third sector organisations and other relevant stakeholders to provide an informal group for people to share best practice

What can we do about it?

We think that the LDAN Bill could potentially strengthen some parts of the Coming Home work to make sure that the vision is achieved.

We prioritised work on the Dynamic Support Register and launched this across Scotland in May 2023. This improves the monitoring of the experiences of people with learning disabilities and complex care needs who are in hospital, who are in out-of-area placements and/or whose current support arrangements are at risk of breaking down. This underpins all of the Coming Home work. It ensures that there is visibility for this population. We think that legislation could help with this recommendation.

We are establishing a Practitioner Peer Support Network through Healthcare Improvement Scotland (HIS). The group is collaboratively supporting practitioners to work together to improve local processes and case management. We do not think that there is a need to legislate for this group.

We have been progressing scoping work on the National Support Panel. We think that legislation could help with this recommendation.

Part 1: Dynamic Support Registers

What happens now?

Currently, Integration Authorities each use and operate a local Dynamic Support Register. These were set up in May 2023 and are backed up by a Memorandum of Understanding, which is an agreement between the Scottish Government and COSLA, signed by the Minister for Social Care, Mental Wellbeing and Sport and the COSLA Health and Social Care Spokesperson. Although this agreement is in place, it is not currently the law that Dynamic Support Registers have to be used.

The local Dynamic Support Registers record information about people with learning disabilities and complex care needs who are in hospital, who are in out-of-area placements or whose current support arrangements are at risk of breaking down. Integration Authorities report data from their Register to Public Health Scotland (PHS) who analyse and publish this information twice a year.

The Dynamic Support Registers are not simply records of people with learning disabilities and complex care needs. They are a way to help professionals know what they need to do so that people are best able to live in their home communities. They contain information about what action needs to be taken to find or build a suitable home and they help professionals collaborate with the right people and organisations to do this. We have provided guidance and support to make sure that the Dynamic Support Registers are used properly. People with lived experience helped to design and develop the Dynamic Support Registers and guidance.

What can the LDAN Bill do?

Proposal 1

We want to strengthen the Dynamic Support Registers and the processes around them through the LDAN Bill so that it becomes law for the relevant local public body (Integration Authority, Local Authority, Health Board) to hold these. This would help to ensure that there is visibility for people with learning disabilities and complex care needs on a national level, and that a consistent approach is taken.

Each area would be required to have a Dynamic Support Register, and to report data from it to PHS for it to be published. It is important to note that personal information about people on Dynamic Support Registers is not published, and none of the data that is published nationally identifies the individuals that it is about.

Further consideration would be given to:

• who would be included on the Registers
• which public bodies would have statutory duties, and
• the guidance and safeguards to be put in place to ensure that the Registers are used properly

If we do not make this a law, then Integration Authorities could decide to monitor people in a different way. It could also be more difficult to ensure that sufficient planning and early intervention is being put in place.

Part 2: National Support Panel

The National Support Panel recommendation in the Coming Home Implementation Report is about improving accountability for people with learning disabilities and complex care needs to ensure that effective work is being carried out to reduce delayed discharges and inappropriate out-of-area placements for this population.

The Report says that the primary purposes of a National Support Panel should be:

• to work with Integration Authorities and partner organisations by providing support and expertise for their decision making and solutions for individuals in a collaborative forum
• to provide checks and balances to ensure that people with learning disabilities are receiving the best care in the most suitable environment
• to understand and hear from families and individuals about their individual circumstances

What happens now?

There is not currently a way for people with learning disabilities and complex care needs who are facing inappropriate hospital stays or out-of-area placements to have their case reviewed by experts.

Health and Social Care partnerships, health boards and local authorities are responsible for commissioning and delivering local health and social care services. When people are unhappy with the health or social care service they receive, they can make formal complaints through the NHS Complaints process or to their local authority respectively. In both cases, the Scottish Public Service Ombudsman can provide an independent say on any complaints. People could also pursue legal proceedings to challenge a decision that has been made by a public body, for example through a judicial review.

People who are subject to delayed discharge may be treated in terms of measures in the Mental Health (Care and Treatment) (Scotland) Act 2003 ("the Mental Health Act") including Compulsory Treatment Orders (CTOs). The primary role of the Mental Health Tribunal for Scotland ("the Tribunal") is to consider and determine applications for compulsory treatment orders (CTOs) under the Mental Health Act and to operate in an appellate role to consider appeals against compulsory measures made under the Mental Health Act. The Tribunal also plays a monitoring role by periodic review of compulsory measures. The Mental Welfare Commission provides an independent oversight of this process.

We are currently considering reforms to the Tribunal process proposed in the Scottish Mental Health Law Review (SMHLR).^[182] Some of these issues were also explored in the Independent Review of Autism and Learning Disabilities in the Mental Health Act (the Rome review).^[183]

What can the LDAN Bill do?

Proposal 2

The National Support Panel ("the Panel") should work with and support the new Dynamic Support Registers and Peer Support Network and we think there are different ways to do this. We want to consider different options, including whether we should make the Panel statutory in the LDAN Bill.

The Coming Home Implementation Report recommended a National Support Panel that could understand and hear from families and individuals about their individual circumstances.

One way to do that is to establish a panel that would look at every individual case. It would need to review each person regularly and provide advice to the relevant Integration Authority, local authority and/or Health Board on each case. There would be issues to consider around powers and duties and the interaction with the role and functions of existing bodies like the Mental Welfare Commission.

Although we have thought about this, we do not think it would work in practice due to the length of time it would take a panel to consider every case. We would need several panels to make this work and we would need to use our small pool of experts in Scotland to do this, therefore taking them away from their other jobs supporting people. We think this would make the situation worse for people who need quick solutions.

We have set out below the options we think could work under proposal 2.

Option A: Legislative Panel Conducting Individual Reviews within Defined Parameters

This type of Panel would be made up of sector experts who have current knowledge of the Scottish approach to complex care, and who are committed to a human rights based approach. We would recruit or appoint people with lived experience, housing and social work expertise to the Panel. The panel will likely also need legal and clinical expertise.

This type of Panel would have a function allowing it to conduct investigations into individual cases on a discretionary basis. The Panel could have a broad scope of the type of cases that it could investigate and there would be some flexibility built into this. For example, this could be a list of potential circumstances that may give rise to a review or investigation. The Panel members might decide that an investigation into a certain case, and the recommendations and findings that come from that investigation, would provide a good example of what can be done to address complex barriers or issues.

This would mean that not everyone with a learning disability and complex care needs who is in hospital or an out-of-area placement would get an individual review. However, Integration Authorities, Local Authorities and Health Boards would be able to use the findings and learnings from the Panel's example individual case reviews to improve their practices.

The Panel would be reviewing fewer cases and therefore the demand on the Panel and its members would be reduced to a manageable level.

It would be important to ensure that the work of this type of Panel, including how individual cases are selected as examples, is consistent and fair. It would also be important to ensure that the learning that is shared from any example individual case review is anonymised and does not contain any identifiable information about the people involved.

This type of Panel would require the powers to:

• review individual data;
• require information and evidence from public bodies; and,
• make recommendations, potentially with consequences for non-compliance.

There would also be other things to consider, including:

• how this Panel would crossover with existing processes such as investigations by the Mental Welfare Commission or inspections by the Care Inspectorate, and how to make sure it isn't duplicating any of this work;
• whether there would be an appeal mechanism;
• what types of decisions or recommendations the Panel could make;
• what the timescales for the Panel reviews would be; and,
• if there would be penalties for not complying with the decision of the Panel.

Benefits

• The Panel would be legislative, so relevant public bodies (Health Boards, Integration Authorities, local authorities) would be required by law to participate in individual case reviews.
• All Health Boards, Integration Authorities and Local Authorities would be able to benefit from the learnings and findings of the example individual case reviews.

Potential drawbacks

• Only a small number of people with learning disability and complex care needs on a Dynamic Support Register would be individually reviewed by the Panel. However, this would show how the Panel would expect all similar cases to be handled.
• It might be difficult to decide which individual people's cases would be investigated by the Panel.
• It might be difficult to recruit or appoint experts to be on the Panel because they would have to take time out of their existing professional roles.
• It would take longer to set up than a non-legislative Panel.

Option B: Legislative Panel Conducting Peer Reviews of Local Processes

Another option for a legislative Panel would be one that conducts Peer Reviews of Local Processes.

This Panel would consist of a group of experts who could provide checks and balances through a model of peer reviews. It would be made up of a 'bank' of expert members, including people with lived experience, who could be brought in to conduct peer reviews of the work and processes of Health Boards, Local Authorities and Integration Authorities in relation to this population.

This process would involve the Panel going to a local area and reviewing the relevant public bodies' systems and processes in relation to complex care needs, to identify key challenges and issues. This review could be through site visits or job shadowing.

The Panel would then provide recommendations or decisions based on the peer review that the Health Board, Local Authority and Integration Authority would have to implement in order to improve their practices around complex care. The Panel would provide follow up support and would monitor progress.

The Panel might review systems and processes related to:

• Commissioning appropriate accommodations and services
• Securing and financing support packages
• Identifying suitable support providers
• The support plan in the person's current placement
• Any issues or concerns, for example the use of restraint, high levels of behaviours perceived as challenging or serious risk factors

This Peer Review Panel would identify issues which affect all individuals with complex care needs, and potentially find ways to improve local processes and structures that could help to improve the system for everyone.

This panel would be legislative, so the relevant public bodies (Health Board, Local Authority, Integration Authority) could be required by law to participate in a peer review of their processes and structures. They could also be required by law to implement the recommendations made by the Panel.

Although this type of Panel would not be able to review individual cases as part of their role, their reviews would have a significant impact on those individual people and their outcomes.

There are also a number of other considerations about this type of Panel that would have to be made, including:

• how this Panel would crossover with existing processes such as investigations by the Mental Welfare Commission or inspections by the Care Inspectorate and how to make sure it isn't duplicating any of this work
• how the relevant data and information could be shared with the Panel
• what the criteria would be in order for an area to be picked for a review

Benefits

• The Panel would be legislative and therefore public bodies would be required by law to participate in peer reviews
• Public bodies could be required by law to implement the Panel's recommendations
• The strategic support by the Panel would help public bodies make better progress
• Improving systems and processes within the relevant public bodies will improve care, treatment and support arrangements for all of the people in that area

Potential drawbacks

• The Panel would not have the powers or resources to look at individual cases
• It might be difficult to recruit or appoint experts to be on the Panel because they would have to take time out of their existing professional roles
• It might be difficult to create a culture of fully open and reflective practice within a legislative context and people may not participate fully
• It would take longer to set up than a non-legislative Panel

Option C: Non-legislative Panel Conducting Peer Reviews of Local Processes

A non-legislative National Support Panel Conducting Peer Reviews of Local Processes would work in the same way as the Panel described in Option 2, however it would not be legislative.

This type of Panel would carry out peer reviews as above, providing checks and balances and offering support to relevant public bodies (Health Boards, Local Authorities, Integration Authorities) to improve their systems and processes.

Because this Panel would be non-legislative, it could be set up more quickly than a legislative one. However, it would not be the law for Health Boards, Local Authorities or Integration Authorities to participate in peer reviews. The peer reviews would be voluntary, with the option of local areas being able to request a review, and would take a 'critical friend' approach which means the Panel would be supportive but would also be able to ask difficult questions, take an objective view and provide honest feedback in order to address complex issues. Health Boards, Local Authorities or Integration Authorities would not be required by law to implement any recommendations made by the Panel.

In addition, the Panel would not have statutory functions so would be limited in its ability to investigate any individual cases, and have access to certain information in relation to individuals.

There are also a number of other considerations about this type of Panel that would have to be made, including:

• how this Panel would crossover with existing processes such as investigations by the Mental Welfare Commission or inspections by the Care Inspectorate, and how to make sure it isn't duplicating any of this work
• how the relevant data and information could be shared with the Panel
• what the criteria would be in order for an area to be picked for a review
• if there would be any escalation processes if relevant public bodies declined to take part in a review

Benefits

• Provide strategic support to public bodies who are face barriers to providing appropriate support for people with learning disabilities and complex care needs
• Improving systems and processes within relevant public bodies would improve care, treatment and support arrangements for all the people in that area
• Learning from each review could be shared nationally
• An non-legislative structure may be the best way to enable fully open and honest conversation and peer learning
• A non-legislative panel could be set up quicker than one that requires legislation.

Potential drawbacks

• The relevant public bodies (Health Boards, Integration Authorities, local authorities) would not be required by law to participate in reviews
• Public bodies would not be required by law to implement any recommendations made by the Panel
• The Panel would not be able to look at individual cases
• It might be difficult to recruit or appoint experts to be on the Panel because they would have to take time out of their existing professional roles
• Because the Panel would be non-legislative, it might have a lesser impact as public bodies and service providers would not be held to account for this population by law.