Coming Home Implementation: report from the Working Group on Complex Care and Delayed Discharge

7. Summary & Recommendations

This report sets out a new framework for people with learning disabilities and complex support needs who are placed in unsuitable out-of-area placements, or who are inappropriately admitted to hospital, due to breakdown in their community-based support.

This is the group who were the subject of the Scottish Government's Coming Home report of 2018, and recognising that implementation of the recommendations of this report have not been fully realised at the scale or pace required to meet the national ambition, many of the recommendations within this paper echo the findings and recommendations of Coming Home.

It is therefore recommended that the new framework be referred to as the Coming Home Implementation Framework.

7.1 Summary

It has long been Scottish Government and Local Government policy that people with learning disabilities are supported to live well in their local communities, and that people are not unnecessarily delayed in hospital. The £20m Community Living Change Fund has been issued to Integration Authorities and can be held in reserve to be used over a three year period from 2020/21. This framework will support local and national government to meet their policy commitments in relation to people with learning disabilities, as outlined in the Keys to Life. It will also support meeting the obligations contained within the UNCRPD^[11].

It is recognised that there are inherent risks in living within institutional settings, and that there has been documented abuse linked with these types of services. People with learning disabilities in Scotland should feel assured that this report and framework give an indication of the serious commitment in Scotland to respect the human rights of people with learning disabilities and complex support needs. The positive use of the framework has the potential to support the development of greater public trust in services provided to people with learning disabilities.

For people with learning disabilities, particularly those with complex support needs, there are many benefits of the framework set out here.

The framework will set a foundation that will help people to live well in their local communities, to have fulfilling lives, and to have their needs met. This includes ensuring that people are only admitted to hospital for appropriate reasons. Behavioural challenge and the service breakdown which often accompanies it, are no longer a reasonable reason for admission to hospital. The framework also aims to ensure that those who are admitted to hospital do not become stuck there, and have to wait for long periods of time until they can be discharged to a suitable community setting.

If we can establish local placements/homes and source, recruit and retain adequate staffing then people would no longer be placed in out-of-area placements due to lack of suitable local resources or not through individual choice, which often results in fractured relationships with friends and family and loss of connection with their local community. Locally, resource transfer should be considered to ensure that community placements are sustainable. The framework also seeks to ensure that people are no longer placed in unsuitable or poor quality out-of-area placements, which do not meet their needs, i.e. which are large, institutional, provide an inadequate level of care, and/or are disconnected from the local community.

The framework is also designed to ensure that the needs of people with learning disabilities and their families drive the local commissioning strategy, which is there to support them, and enable better planning.

Essentially, the framework aims to provide greater local visibility for people with learning disabilities and complex support needs, and to ensure people do not get forgotten about, or lost in the system.

In addition to directly impacting people with learning disabilities, the framework will also impact on services and how these are planned and commissioned. It will support better local long-term planning to meet the housing and support needs of individuals with complex needs. This should include proactive development of specialist multidisciplinary teams that are focused on providing the necessary services and support in the community to prevent admission to hospital. It should also include proactive development of appropriate housing.

“The framework will provide national oversight and a set of principles and standards”

“The National Support Panel will bring together expert advice available to help HSCPs to deliver”

The framework will provide national oversight and a set of principles and standards to support HSCPs to improve their performance for this group of people and to receive support and expert help to do so. This will include promoting accountability for delivery through a named local lead, helping to identify people at risk of placement breakdown and allowing risks to be proactively managed to prevent admission. There is also a clear emphasis on providing a collaborative and solutions focussed approach, developing local positive community alternatives to hospital and helping HSCPs to develop their skills and share their approaches. The National Support Panel will bring together expert advice available to help HSCPs to deliver.

The use of the framework will provide accurate national information in relation to the support required for people with learning disabilities and complex needs. This will provide useful data-driven planning information about the current and future needs of this group and lead to opportunities to adopt a more evidence-informed and strategic approach to addressing barriers on a national basis.

“Scotland will provide the best possible services that are consistent with a Human Rights Based approach”

Louis' Story, which opened this report, is an example of how Scotland has failed people with complex care needs. It is an aspiration that Scotland will provide the best possible services that are consistent with a Human Rights Based approach, as set out in the Scottish Government's National Outcomes Framework and as proposed in legislation through the Human Rights Bill.

The successful implementation of this framework should promote the development of good quality local support services, monitored through appropriate quality assurance systems and reverse the trend of developing large, institutional services. This is the route to upholding the Human Rights of people with learning disabilities and complex needs.

7.2 Recommendations

1) Scottish Government and COSLA should make a policy commitment to take forward the proposed framework. There may be a financial implication for Scottish Government, e.g. to set up the Register and to support the Panel, in addition to administrative and civil service support. The framework may also require legislative support and will sit alongside other relevant ongoing work such as the National Care Service and Mental Health Reviews.

2) The current sample Dynamic Support Register should be developed into a tool for national use. This will require digital and information management expertise and resource to produce a secure and useful electronic database that gives visibility to this hidden population on both a local and national scale.

Detailed operational guidance should be developed for the use of the Dynamic Support Register, co-produced with HSCPs. (Initial draft guidance is attached at One).

3) A National Support Panel should be established in order to provide support and oversight of the Dynamic Support Register. The National Support Panel will bring sector expertise together to provide an open collaborative forum that can troubleshoot individual cases in partnership with local areas. Scottish Government should consult on the precise role and remit in order that the panel provides value and achieves the objectives of reducing inappropriate hospital admissions and out-of-area placements. (Scoping work is included in Appendix Two).

4) A National Peer Support Network should be established to facilitate people coming together to learn and share best practice, and to get support when planning services for individuals with particularly complex care needs. This network should offer support and advice informally to allow cases to be discussed openly and frankly, with input from clinicians, commissioners, social care providers, social workers and family members from around Scotland who have expertise and experience in developing and delivering services to people with learning disabilities and very complex support needs.

5) Recognising the lack of available evidence for people with enduring mental health conditions and the expertise of the contributors to the SLWG, further work should be undertaken to explore the issues in relation to people with enduring mental health conditions who are subject to delayed discharge from hospital. This should include sector experts in mental health and social work, as well as people with lived experience.

What does good look like?

Building on the content of this report, success will be measured against the mission statement: By March 2024 we expect to have seen out-of-area residential placements and inappropriate hospital stays greatly reduced, to the point that out-of-area residential placements are only made through individual or family choice and people are only in hospital for as long as they require assessment and treatment.

Work is already underway against this objective both nationally and locally as a result of the long term ambition to reduce delayed discharges.

The Mental Welfare Commission's No Through Road report (2016) suggested that the Scottish Government in partnership with integrated joint boards, should develop a plan to end delayed discharges, in the context of health and social care integration, and ensure that the monitoring and reporting of delayed discharge was robust.

The Scottish Government's Coming Home report (2018) recommended that a more proactive approach was taken to planning and commissioning services and to identify suitable housing options. The need to provide Positive Behaviour Support (PBS) training was also highlighted.

The Scottish Government's Keys to life implementation Framework (2019) also recommended investment in the development of positive behavioural support through the creation of a university post and provide direct support to Health and Social Care Partnerships to consider the findings, including the need for different models of care to bring home people identified as priority to return.

The route to achieving this will require multi-sector multi-disciplinary collaboration at a number of levels, and the decisions taken will be variable across the country to account for local need.

Case Study The Richmond Fellowship Scotland: Colin's Story

Colin grew up in a rural area with a close extended family nearby, receiving local community support. He has complex brittle diabetes type 1 and organic personality disorder. His diabetes required blood tests up to six times daily, including during the night.

In 2009 Colin's diabetes became unstable and resulted in an Acquired Brain Injury (ABI). Following initial treatment, he was admitted to a specialist unit in Glasgow. The result of the ABI included a range of behavioural concerns including:

• Impulsiveness
• Physical aggression
• Absconding behaviour
• Difficulty understanding when things will happen,
• Difficulty with problem solving and reasoning skills.

A behaviour management plan included daily use of physical interventions to manage his behaviour. Colin had limited community access due to absconding behaviour and the ratio of staff required and he had limited opportunity for independence and developing active support skills and developing skills of daily living. His family were keen for him to return to his home area to be near family and live within his local community.

Colin's family spent the next 10 years campaigning to access the right support in the community to allow him to return home however it was suggested there were insurmountable barriers to achieving this goal. These included:

• The behavioural challenges that he displayed
• The risk of physical aggression to a District Nurse who would require twice daily visits to manage Colin's diabetes.

In 2017 after over 10 years out-of-area an individual tenancy was identified in his home area with 24 hour support provided by The Richmond Fellowship. It was recognized that a transition would need to be fully coordinated and a true collaborative approach taken. The transition team included the views of family, Occupational Therapist, specialist diabetes nurse and the District Nurse who would be attending twice a day. Overseen by a Team Manager competent in PBS (he had previously completed a six-month placement in the PBS team, completed his Professional Development Award, has many years' experience of working in complex services and designing new packages of support).

All frontline staff received PBS and Active Support training and a suite of bespoke training was developed including; comprehensive support planning and developing proactive plans. A programme of alternative communication systems was implemented including teaching Colin to use a social story outline why the district nurse takes blood and what to do as well as a visual keyring to help plan and structure the day.

How are Colin's Human Right now being upheld?

• Regular quality contact with him family
• Part of his local community and uses a bus pass with staff to access the community every day
• Has choice, control and independence in his life
• Has a job – supported 2 days per week at the local foodbank
• Developed a social network – attends a drama club and has a girlfriend
• Wants to develop his skills and is supported once a week to attend a skill building course at the collage.

"My life has changed so much for the better." - Colin

Next Steps

In this final section we have given an indication of the kind of actions required nationally and locally to implement the key recommendations in this report.

True partnership working, in a meaningfully collaborative way is necessary to meet the vision aspiration – this includes but is by no means limited to: those with lived experience of complex care needs including individuals and their families and welfare guardians; clinicians working with people with learning disabilities and complex support needs; those with experience of both commissioning and providing services.

In addition, the collaboration of stakeholders such as the Mental Welfare Commission, Care Inspectorate, People First, Social Work Scotland, SOLACE, IJB chief officers, NHS chief executives, housing sector professionals, SCLD, Scottish Learning Disability Nurse Leads Group advocacy and carers' organisations is essential to achieving this aspiration.

One of the main barriers is a lack of visibility of the population of people with learning disabilities. Success can be evidenced with an increased visibility of both data and actions to address the needs of this neglected population. Whether through data publication, Commissioning Plans, Strategic Housing Investment Plans, or the National Care Service, collaborative working to ensure this population is no longer ignored is critical.

What should happen nationally?

National Government has a role in providing the leadership and direction to support nationwide systemic and cultural change. National Government should:

• Progress development of a national system that will host the Dynamic Support Register to identify those currently and at risk of admission, so that local areas can provide a dynamic and flexible response for these individuals.
• Establish an expert National Support Panel to assist HSCPs with delayed discharges and to provide leadership and sharing of good practice in order to problem-solve any barrier to repatriation or discharge.
• Comprehensively invest in social care to support skilling up of the sector and to fund services at the level needed for the particular needs of people with learning disabilities. This potentially includes increased pay or direct provision on a national level for those working with those with the most complex needs. The Independent Review of Adult Social Care has a specific recommendation (recommendation 10) that "packages of care and support plans must be made more portable and supported people should not have to fight to retain support because they have moved home" and the Scottish Governments National Care Service was their response to the Review.
• Encourage Programme Budgeting. Programme budgeting is an approach that collects resource allocation by "programme" groupings, enabling the analysis of historic total expenditure on each programme; programmes may be defined in terms of client or care groups; or diseases; or service categories. It looks at resource utilisation within a certain programme rather than resource allocation between programmes. Programme Budgeting Marginal Analysis (PBMA) is an approach to commissioning and redesign of services that can accommodate care professional, service user and management perspectives within a single, transparent decision making framework. It is a practical health economics tool for prioritising investment and disinvestment decisions within the programme budget that allows for the complexities of health and social care provision to be examined alongside the economic concepts of opportunity cost and the margin. Adoption of a programme budgeting approach should include the totality of the resources available, which must include the hospital budget, and agree via collaborative commissioning how it could be used more effectively to provide better outcomes.
• Develop alternative methods of commissioning that address the specific challenges facing people with learning disabilities who require the most complex care needs, considering legislative changes where necessary. This includes supporting local areas with an evidenced piece of work on accurate revenue cost of care packages.
• Foster greater engagement and collaboration with the Scottish housing sector nationally and local strategic housing planning with a view to supporting publication of guidance in relation to housing specifications for complex care. The Scottish Federation of Housing Associations "Future Models of Housing, Care and Support"report summarises a number of "asks" the cross over with the issues identified in the delayed discharge of people with learning disabilities and/or complex care needs. There is significant good practice in local areas that demonstrate how housing and care and support services can be developed by reconfiguring hospital and community budgets and staff.
• Consider the problems associated with Ordinary Residence and support local authorities, health boards and Integration Authorities on how to manage these challenges, with consideration for legislative changes where necessary.
• Publish analysis based on the Census 2022 returns, when available, that allows local areas to benchmark performance and need for people with complex care needs, e.g. number of inpatient beds.
• Recognise and understand the legal status of Welfare Guardianship as a court-conferred power with formal procedures for accountability and ensure Welfare Guardians are incorporated into national and local policy frameworks and practice.

What should happen locally?

Local Government, NHS Boards, Integration Authorities and the Third Sector are key to providing the services and supports for people with learning disabilities alongside their family and welfare guardians. Their decisions and actions are pivotal to achieving the vision and ultimately reducing the number of delayed discharges and out-of-area placements:

• Integration Authorities should actively plan the use of the community change fund in accordance with this report.
• There should be collaborative work between health, social care and housing and NHS Boards to consider whether opportunities for resource transfer exist to better utilise the current spend on complex care. Local areas may wish to consider adopting a programme budgeting approach. This will enable areas to explore whether there is potential to re-profile out-of-area spend to be reinvested in a better way to meet an individual's needs more locally. It is acknowledged that in some areas, closure of one or two inpatient beds may not result in any substantial resource. However, in other areas, ward closure could have the potential to provide significant resource to re-profile.
• All bodies should support better planning at transition age to identify those at future risk of admission and consider early interventions in order to mitigate crisis placements:
  • Provide support for challenging behaviour at an earlier age, particularly PBS or similar rights based approaches and support for alternative communication.
  • Improved joint working between children's services and adult services for people with learning disabilities.
  • Greater support for family carers, including access to specialist training and respite.
• Develop multi-agency contingency planning for crisis: clarify roles and responsibilities if a placement begins to fail, including what additional support can be offered, governance issues, changes to working conditions etc.
• Consider intensive support for existing placements as they start to fail, thereby preventing closure and eviction that can trigger this process.
• Ensure mechanisms for quality assurance and evaluation are incorporated into the commissioning of care packages for complex cases.
• Ensure potential for mediation is incorporated into commissioning care packages for complex cases.
• Ensure there is appropriate available housing - the key to ensuring a person can remain in the community. Areas may wish to refresh their policies around the housing needs assessment and strategic planning process. When a person is admitted to hospital in a crisis, they may be at risk of losing their tenancy and then become delayed if they have nowhere to return to. Bespoke homes are expensive, need to be carefully designed and subsequent uses need to be thought through with effective joint working and planning. This must also include close working with individuals, families, carers and other service providers.

What should people with learning disabilities, their families and Welfare Guardians do?

People with learning disabilities, their families and welfare guardians are experts and an incredibly valuable resource. They may be the allies and advocates for people who are unable to advocate for themselves and have been pivotal in seeking change. People with lived experience and their families can:

• Continue to advocate for themselves and their loved ones. This could be through contributing to local processes where this is afforded, e.g. via Care & Treatment Reviews. Families are vital in ensuring that the voice and choices of their loved one with a learning disability are at the centre of the process and their choices are properly taken into account.
• Seek support from advocacy experts such as People First, who have expertise in advocating for people with learning disabilities who are delayed discharge in hospital.
• Obtain Welfare Guardianship through the courts to ensure voice has legal force.
• Use legal mechanisms open under civil law, invoke Human Rights frameworks and Scottish legislation to make a case for change where it is needed.
• Collaborate with MSPs and local councillors, social workers, commissioners, and health managers in work to improve care.
• Hold the life story of the person.
• Work with care staff on the history and language of the person being cared for.
• Contribute to and seek support from charities such as ENABLE Scotland and PAMIS who can provide advice and support to people with learning disabilities and their families.

What should clinicians do?

• Refocus local policies and procedures to ensure criteria for admission to hospital does not include challenging behaviour and is clinically justified.