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

3. Background

Previous Reports

In recent years there have been several reports highlighting people with learning disabilities living in hospitals. The Mental Welfare Commission's report No Through Road(2016) and the Scottish Government commissioned Coming Home report (2018) have highlighted the significant number of people with learning disabilities who are delayed in hospitals in Scotland, sometimes for many years, despite being clinically assessed as ready for discharge into community settings.

Out-of-area:

Coming Home reported delayed discharge and out-of-area placements from all but one (large) HSCP. As of 2017 data, there were 705 people out-of-area in Scotland from 30 Health and Social Care Partnerships (HSCPs)^[5]. Of these individuals, there were 109 people who had not chosen their current placement and were identified as being priority to return. There were also 79 people placed outside of Scotland, in either England or Wales. Many of these placements would have been agreed with families but more than half of these people were placed in the rest of the UK because of a lack of local alternatives.

Delayed Discharges:

The report evidenced unacceptably long delays to discharge. That same dataset showed 67 people experienced a delayed discharge and therefore resident in a hospital. At the time, more than 22% had been in hospital for more than ten years, and another 9% for five to ten years. Only 12% had been admitted less than a year, albeit this data does have limitations as explained in the full report. The majority of those placed out-of-area or delayed in hospital had behaviour that staff found challenging and this was often a reason for service breakdown.

• 705 people out-of-area in Scotland
• 79 people placed outside of Scotland
• 67 people experiencing delayed discharge

The Mental Welfare Commission's No Through Roadreport 2016, referred to 58 delayed discharges. This followed visits to all 18 hospital units in Scotland for people with learning disabilities. It reported the main reasons for delayed discharges to be a lack of funding; accommodation; or an appropriate care provider. In many cases, a combination of all three existed.

The latest Mental Health and Learning Disabilities Inpatient Bed Census 2019 showed 54 delayed discharges in learning disability specialties, with an average length of delay totalling just under four years. The overall length of stay for these people in hospital was 1,451 days, suggesting a period of about four weeks where assessment and treatment occurred followed by a further 4 years of delay before they could be discharged. Both the Coming Home and No Through Road reports refer to little discharge planning actually happening during this prolonged period.

From the Public Health Scotland data, in 2018/19 (the latest complete year of costed data), there were 23,255 hospital bed days linked to people with learning disabilities who did not need to be in hospital (10,336 code 9^[6] and 12,899 code 100^[7]). The bed days were used by a total of 108 people but average out at 63 hospital beds in use per day. There were a total of 69,500 overall bed days in learning disability specialties, therefore around a third were taken by people who shouldn't be in hospital.

• 69,500 total bed days
  • 23,255 bed days linked to people with learning disabilities who did not need to be in hospital.

Most of the inpatient beds are provided for assessment and rehabilitation, yet the data demonstrates we have people spending their lives in these hospital beds as a result of delayed discharge. In looking at the overall provision, if we could reduce the overall lengths of stay and remove the delayed discharge element, overall capacity should reduce by about half.

Data on delayed discharge for people with learning disabilities is not routinely collected. There is no mechanism to track re-admission data and there is a lack of evidence to know what types of care and accommodation are required regionally and nationally. This makes medium and long term planning almost impossible. These reports are the best evidence of the situation in Scotland and it is clear that the recommendations of past reports have not yet been fully implemented.

These reports highlight that people living in hospital, or in inappropriate out-of-area placements, have restricted life opportunities, including their use of the community, access to work or meaningful day activities, personal relationships, and autonomy. This is a clear failure to uphold their human rights. It is not suitable for people with learning disabilities awaiting discharge to be living alongside people requiring therapeutic clinical care. This provides unnecessary challenges for staff in the delivery of safe and effective care.

There is evidence from a number of facilities in England of the risk of human rights abuses when people are unnecessarily homed out-of-area or in multi-bed institutions. A BBC Panorama investigation broadcast in 2011 exposed physical and psychological abuse suffered by people with learning disabilities at Winterbourne View. Eight years later undercover BBC filming showed staff intimidating, mocking and restraining autistic people and/or people with learning disabilities at Whorlton Hall. The Muckamore Abbey scandal evidenced a 1 in 4 chance of being abused and is currently the subject of a public inquiry. The tragic deaths of three people (Joanna, Nicholas and Ben) with learning disabilities at Cawston Park show the worst possible consequences of poor care. An independent safeguarding review into their deaths uncovered "excessive use of restraint and seclusion by unqualified staff, "overmedication," or the Hospital's high tolerance of inactivity – all of which presented risks of further harm. The review made a number of recommendations including a review of the current legal position concerning private companies, their corporate governance and conduct by the Law Commission.

Cost

Out-of-area placements and delayed discharges come at a high cost, not just in terms of the human cost to the individual and their families but also financial cost to the commissioning authority. There are also issues around effective scrutiny and monitoring of individuals who have been placed outside of Scotland.

NHS data showed that the cost of all learning disability inpatient stays was estimated at £48m in 2018/19, with the cost of beds for people with learning disabilities and/or enduring mental health conditions who are subject to an unnecessary delayed discharge estimated at £16m (or averaging £252,000 per person).^[8]

Delayed Discharge

• £48 million total cost on learning disability inpatient stay
  • £32 million clinical learning disability inpatient stays
  • £16 million unnecessary delayed discharge

In terms of out-of-area placements, a survey of all Health and Social Care Partnerships carried out by the SLWG in 2020 received 22 responses. These showed 47 people placed outside of Scotland at a cost of £7.748m, which would scale up to approximately 70 people across Scotland at a cost of £11m.^[9] A further 469 people were placed within Scotland but outside of their own local authority at a cost of £48m.

Out-of-area

• £59 million total cost of out-of-area placements
  • £48 million ‘placed within Scotland but outside own local authority’
  • £11 million ‘placed outside of Scotland by Local Authority’

When adding in NHS out of Scotland placements, we can assume on average 90 individuals are placed out-of-area in community placements in the rest of the UK at an annual cost of £15m (or an average of £167,000 per person).

Scotland Excel has estimated the average annual cost of a complex package of care in the community for people with a learning disability at £172,000 (taking in to account only packages that were valued at over £100,000 – there are likely to be far smaller packages of care where family members provide most support). These packages ranged from £108,000 to £201,000.

Housing

Due to the invisibility of many people with learning disabilities it is not possible to quantify how many people should be living in their own home rather than a care facility. However, Scotland's ambition is that as many people as possible are cared for in a domestic setting. It is very unlikely that a suitable house already exists or will become available within a reasonable or predictable time period. As a consequence, for those for whom housing is the appropriate outcome, it is likely that a bespoke solution in the form of an individual dwelling or some arrangement of shared accommodation or core and cluster provision is likely to be most appropriate. For a small number it may be possible to secure the appropriate house in the private sector. In most situations where housing is required the only deliverable solution will be in the social rented sector provided by either a local authority or a housing association.

“Scotland’s ambition is that as many people as possible are cared for in a domestic setting”

New homes for social rent and to meet particular needs are delivered though the local strategic housing planning system. Local Authorities prepare a local housing strategy (LHS) every five years and a Strategic Housing Investment Plan (SHIP) every year. The LHS provides an analysis of housing needs and identifies medium term priorities for service development and investment. The SHIP sets out the specific investment projects to be delivered in the current year and the following four years based on local needs, the resources available through the Scottish Government's Affordable Housing Supply Programme, and individual landlords' own investment plans. Grant rates are set nationally but allow for a degree of flexibility in the case of homes designed to meet particular needs.

The delivery of specific projects is driven through joint working arrangements between the council as Strategic Housing Authority and social landlords (including the council as landlord) and other partners.

Local Housing Authorities also prepare a Housing Contribution Statement (HCS) as part of the Integration Joint Board's (IJB) commissioning plan. The HCS sets out how housing related services including new supply will contribute to meeting the IJB's heath and care priorities including the provision adaptations and the supply of housing designed to meet particular needs.

For this system to be effective all three planning documents (LHS, SHIP and HCS) need be consistent in identifying the full range of needs, establishing relative priorities and identifying the necessary resources to support delivery. In the case of specialist and supported housing the IJB's commissioning plan also needs to identify people with learning disabilities; the nature and scale of provision and the revenue resources available to provide the care and support required.

The LHS/SHIP process can also help identify alternative or innovative funding options including private sector investment, home ownership options and the use of alternative funding including, for example loan finance where these are appropriate.

Accurate data on the needs and requirements of people with learning disabilities is the first necessary step to ensure that those involved in assessing local housing needs are aware of the specific needs of people with learning disabilities.

There are mechanisms in place for this that have been successfully used in local areas to develop specialist housing for complex need such as core and cluster models. This would require the appropriate data at a local level to support planning and the alignment of strategic commissioning and housing plans with appropriate links to Housing Contribution Statements.

“ This would require the appropriate data at a local level to support planning and the alignment of strategic commissioning and housing plans with appropriate links to Housing Contribution Statements.”

For Adults who lack capacity, the Joint statement by the Scottish Government and The Mental Welfare Commission on supporting discharges from hospital for adults with incapacity was published in October 2021 and references the additional guidance published to navigate discharge planning in the Adults who lack capacity - discharge process: key actions (November 2020). However the statement is clear:

When people are clinically well enough to leave hospital, they should receive all necessary information and support to return to their home, whether that is their own house or an alternative community setting which is their home. It is not in anyone's interests to stay in hospital when there is no clinical reason to do so.

For those people who do not have the capacity to fully participate in discharge planning processes, legal frameworks must be considered to ensure appropriate lawful authority and respect for the person's rights.

It is important to acknowledge that there are examples of good planning, commissioning and experience across Scotland in achieving sustainable discharge and in avoiding inappropriate hospital admission in the first place; however it is also clear that more can be done to ensure better outcomes for this group of people.

Although hospital discharge and commissioning are the remit of local HSCPs, the risk of human rights abuses is an urgent issue which needs to be addressed at a national, strategic, and system-wide level in order to find innovative, resourced, and sustainable solutions.

“ The risk of human rights abuses is an urgent issue which needs to be addressed”

Case Study – Enable

In partnership with one HSCP, ENABLE Scotland has worked on a successful plan to support a young man, aged 27 who had been delayed in hospital for 3 years, out of an acute setting and into a home of his own.

This required development beyond the 'traditional' provider approach and required an 'all in' approach across the whole organisation to do whatever it takes. As a provider, ENABLE took a lead role in advocating for the rights of the young man to fully direct his own support; delivered a salary rate in excess of the Scottish Living Wage rate to attract and retain a committed, skilled and sustainable staff team; allocated a dedicated service manager to oversee the development of the service from design to recruitment to delivery of support, including the design of the property; and invested in an organisation wide practice development team, led by a registered Learning Disability Nurse to lead the training and development of the team.

Following a significant process of integrated planning, clinical governance, targeted recruitment of a larger 5:1 support team, (matched with the young man's preferences, for example to have a greater ratio of male Personal Assistants), the provision of specialist input and training for that team, and work with local housing services to procure and design an appropriate and safe home setting, the HSCP and ENABLE have now successfully enabled this young man to move out of hospital into his own home. He is supported by his bespoke team, and currently enjoys time outdoors in his garden, which has emerged as one of his favourite things to do. On his first night at home, he sat on his own sofa for the first time in 3 years.

Barriers to Change

The SLWG heard from a range of professionals from different sectors around the current challenges and barriers faced. While not an exhaustive list nor derived from a consultation, the themes discussed can be helpful in understanding the context in which different sectors are working.

Providers:

• Social care packages inadequate as limited non-contact time to allow for planning, staff support, debriefing, on-the-job coaching, team meetings, supervision and training.
• Suitable accommodation, or accommodation that can be adapted, or is flexible, is not available and will need longer lead time for development and planning phases as well as access to capital funding.
• Recruitment and retention of staff with the necessary specialist skills.
• Support from specialist services and integrated team experts does not often include direct support and is not quickly and easily accessible.
• High risk of financial loss to providers if they have vacancies in their accommodation, so the need to fill voids often rushes placements without proper funding and time for adequate pre-admission planning and visits.
• No true assessments at the start of the process leading to lack of knowledge when identifying triggers, behaviours, and analysis of this.
• Delays can be caused due to practical issues around buildings and property, handovers from hospital to providers and due to neighbour relations.

HSCPs:

• Hospital admissions can be the fall-back position as a result of a breakdown in care packages, usually related to behaviours that challenge. Admission is seen as a response to risk rather than a clinical decision.
• Difficulty in finding providers who are able to provide the right level of specialist support that may be required.
• Small numbers of individuals in each HSCP.
• Lack of agreement about who can live in the community and what level of risk is acceptable in the community, which can vary across partnerships.
• Some individuals have a history of failed placements, are increasingly traumatised and therefore find it more difficult to settle in any new environment.
• Historic funding arrangements for those effectively living in hospital may de-incentivise HSCPs to work towards discharge. Integration was established to resolve this. The process is there it is just not being followed.
• The current use of and interpretation of exclusion codes within the Delayed Discharge recording system does not motivate or place any urgency on finding a community placement.

Commissioners and commissioning Process:

• Competitive tendering is unhelpful in terms of engaging social care providers in a frank and person-centred discussion of the good support requirements, challenges for people with complex care needs and compatibility between the provider and the individual.
• Often an individual package of care will be in excess of £250,000 per annum requiring a very long term commitment from social care budgets.
• Commissioning is rarely co-produced and families often have very little say in how services are developed for their family member. People with learning disabilities and their families should be involved in commissioning, however it often doesn't happen. There can also be a disconnect between Integration Authorities as the commissioners of care and local authority housing departments.
• Quality of assessments are variable and in some cases poor and too generic with little detailed understanding of the complexity of people's needs.
• Commissioners feel limited in what they can provide due to lack of specialist providers within their areas, and they feel constrained by available funding, and/or ability to cultivate the experience locally.
• Ordinary Residence regulations act as a disincentive to HSCPs to commit to building or acquiring group accommodation that could be deemed to be housing. It is also a barrier more generally, for example there is a lack of incentive to find a care package in their locality if they are in a hospital in another authority or to take over the care package for individuals who have moved to their area.
• Unrealistic expectations leading to the process being rushed and the placement breaking down.
• Commissioning of accommodation including the challenges of finding a site in a suitable location for everyone; the design and specification challenges in the case of very high support needs accommodation; issues of capacity when it comes to signing a tenancy; the perceived risks on the part of housing providers around the subsequent occupation of a highly adapted dwelling and the likely concerns about void and re-let processes including rent loss and the likely ability to identify subsequent occupant.
• Changing needs of the person requiring accommodation due to a change in their health. Events such as a stroke may render their current accommodation no longer suitable.