The majority of wards and community services for people with a learning disability or autism are providing good care, according to CQC’s latest State of care report (October 2019) and ratings as of 1 April 2020 as of 1 April 2020, and there are a number of trusts with learning disability and autism services that have been rated as 'outstanding' that other providers can take learning from.
This section sets out some examples of how such trusts are delivering high-quality care, based on interviews we conducted with leaders of seven trusts providing good or outstanding learning disabilities and autism services. The final part of this section shines a spotlight on some notable steps we are aware of trusts taking most recently to meet the specific challenges the COVID-19 pandemic has posed for the delivery of high-quality learning disability and autism services.
Co-producing person centred and holistic care
Many of the trusts we interviewed have been undertaking work in collaboration with service users, families and carers to deliver high-quality, person-centred and holistic care that best meets people’s needs. Service users at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust have access to their own clinical data dashboard so they can be part of conversations about managing their own care as part of the trust’s Talk First initiative. A number of trusts are also running employment and work experience schemes for service users. Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust deliver the Project choice(August 2018) programme with the support of Health Education England, which has given young people using the trust’s services the opportunity to learn new skills in a real work environment and the confidence to help them gain employment or further training in the future. South West Yorkshire Parrtnership NHS Foundation Trust also runs a work experience scheme and a significant number of the latest cohort gained employment with the trust following their participation in the scheme.
Gloucestershire Health and Care NHS Foundation Trust is working collaboratively with Inclusion Gloucestershire, a user led organisation, alongside Family Partnership Solutions, a family carer led community interest company, and Gloucestershire County Council, to develop the national Oliver McGowan mandatory training on autism and learning disabilities for all health and social care staff. This training will be based on the findings of Right to be heard (Department of Health and Social Care, November 2019) and core capabilities frameworks (Skills for Health, October 2019). The experts by experience employed by Inclusion Gloucestershire will be integral to the development and delivery of this training, sitting on the planning board and acting as co-facilitators on every training event.
We at Inclusion Gloucestershire are very good at providing user led, and user designed and delivered training as everything we do has our service users and people with lives experience at the heart of it. I am very much looking forward to being involved in this project because we are raising awareness and helping people to understand our conditions which is something that I am very passionate about.Expert by Experience, Inclusion Gloucestershire
Putting service users at the heart of service design and innovation
With regards to innovative service design, Mersey Care NHS Foundation Trust involved service users, families and carers and experts by experience in the design and delivery of its life rooms sites and services, which focus on providing a safe and welcoming space to meet others, access opportunities and learn about community resources. The trust also plans to open a high-quality, regional, medium secure unit, as part of its wider ambition to establish a new centre of excellence in forensic care, with the users of the building firmly at the heart of each stage of the design process. It will be a place of innovation, using the latest technology and therapeutic techniques to improve recovery times for people, staffed by a range of specialists in mental ill health and learning disability care from a wide range of disciplines.
Similarly, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust has worked in partnership with staff, service users and families to design its Mitford Unit, which has been a leading centre for providing timely mental health support for adults with autism since 2016. There is a strong focus at the unit on working with families and carers to get people back home as soon as possible and the innovative design of the building has received particular praise for the way it incorporates a range of elements to make it as welcoming as possible and to reduce anxiety for adults living with autism (January 2018) . The trust’s Monkwearmouth clinic has also been recognised as a national centre of excellence, and has been visited by several other trusts across England who are looking to develop similar processes.
More broadly, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust is playing a leading role in the efforts to stopping the over-medication of people with learning disabilities and autism (STOMP), and has changed models of services delivery to makebetter use of clinical pharmacists in particular. NHS England has published a number of blogs and case studies online that highlight how the STOMP programme is making a difference to people’s lives.
Alongside designing innovative, high-quality bed based services for people who require a specialist inpatient setting to meet their needs, trusts are also working hard to reduce the number of hospital beds they have and investing in community-based provision and infrastructure. Most of Kent & Medway NHS and Social Care Partnership Trust’s assessment and treatment unit has been decommissioned by the clinical commissioning group (CCG) to develop a community service, while there are almost 250 people who are being successfully supported in a community setting by Mersey Care NHS Foundation Trust’s specialist forensic learning disability teams, who would otherwise have had to receive care and support in a forensic inpatient setting.
More broadly, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust is playing a leading role in the efforts to stopping the over-medication of people with learning disabilities and autism (STOMP), and has changed models of services delivery to make better use of clinical pharmacists in particular.. NHS England has published a number of blogs and case studies online that highlight how the STOMP programme is making a difference to people’s lives.
South West Yorkshire Partnership NHS Foundation Trust was able to reduce its local bed base from 11 to 6 in 2016 and reinvested the savings made to establish intensive community support teams in each of the four localities the trust provides services in. A community assessment and treatment service, and a regional forensic outreach liaison service was also established by the trust and system partners. These new teams and services were set up in line with national recommendations and have helped ensure – alongside other key elements such as the use of dynamic support registers; rigorous, frequent care and treatment reviews; and the wider efforts of the system to work effectively together more broadly – that more people’s needs are met in the community and inappropriate hospital admissions and lengths of stay are reduced. This model of care has also meant the trust has not needed to send people ‘out of area’ when care in an inpatient setting is required, despite now having a significantly lower local bed base.
Tees, Esk and Wear Valleys NHS Foundation Trust has also achieved significant bed reductions – in one hospital beds were reduced from 16 to 6. In Durham and Darlington, the trust reviewed its community provision and held a kaizen event to re-model how the behaviour team, assertive outreach and intensive home support teams could work as one specialist health team with multi-functional workers able to deliver PBS, mental health, crisis, and provider liaison support. Additional funding has been used to deliver seven day community support, which provides a crisis response to help keep people out of hospital and facilitate discharge in the area: the trust is currently reviewing this model with a view to making further improvements and replicating it across other areas the trust serves.
Working collaboratively with local and system partners
Trust leaders highlighted how they are working with a range of local and system partners - from local authorities and housing associations to GP practices and general hospitals - to ensure high-quality care and support is available for people when and where they need it.
Kent & Medway NHS and Social Care Partnership Trust is part of an alliance led by Kent County Council that brings physical health, social care and community services together to meet people’s needs in a more joined up and strategic way. The alliance has involved pooling budgets and has been particularly effective in supporting people with complex needs and those at risk of their current placement in the community breaking down. The trust has been able to minimise the number of people it has had to place in services out of area significantly and credits the alliance as a key reason for this.
Kent & Medway NHS and Social Care Partnership Trust is part of an alliance led by Kent County Council that brings physical health, social care and community services together to meet people’s needs in a more joined up and strategic way.
South West Yorkshire Partnership NHS Foundation Trust has been able to bring down the number of children waiting for an autism assessment in Wakefield (some of which had been waiting for as long as three years) significantly due to system partners working effectively in collaboration: the trust, local council, general hospital and CCG worked together to agree the delivery of a different model of assessment that was in line with NICE guidelines and possible to deliver within the same funding envelope.
In order to address the lack of high-quality, supported living options available in the local area for people who were ready to leave hospital, Tees, Esk and Wear Valleys NHS Foundation Trust created a subsidiary specialist social care provider, Positive Individual Proactive Support (PIPS). PIPS’s support staff and specialist nurses have been able to provide the skills, support and training to an increasingly growing number of housing associations so they have the confidence to let homes to people with a learning disability or autistic people. PIPS is currently supporting 39 individuals and families have praised the model of support and the work of staff.
The service we have created has significantly reduced the scale and intensity of packages from, in some cases, more than five staff to a patient to more like a 1:1 service now, at the same time as vastly improving quality of life and the environments people are living in. It is a properly sustainable option for people who have historically been subject to huge amounts of institutional care over the years and can now live in their own tenancies, with very personalised support packages and good, strong therapeutic and care relationships.Chief Executive, Tees, Esk and Wear Valleys NHS Foundation Trust
Gloucestershire Health and Care NHS Foundation Trust have emphasised that agencies within Gloucestershire have a long history of partnership working, reflected by One Gloucestershire’s status as an integrated care system, which brings together expertise, experience and commitment from health and social care services with lived experience from service users and their families and carers.
Values based recruitment, growing supply and developing existing staff
Several trusts are increasingly using a values-based approach to recruitment, to help ensure they have a workforce that is not only the right size with the right skills, but also with the right values to support effective team working and the delivery of high-quality, safe and compassionate care to service users. Tees, Esk and Wear Valleys NHS Foundation Trust has an established set of values and a behaviour framework which inform the questions used by recruitment managers when recruiting new staff. The trust always involves experts by experience from its service user reference group, supported by independent advocates, in the recruitment process of new staff. Similarly at Gloucestershire Health and Care NHS Foundation Trust, applicants participate in a values based interview where they are asked to demonstrate skills and behaviours in relation to the trust’s values.
To address the sector’s significant workforce gaps, a number of trusts are working with local universities to sponsor courses to grow the supply of key workforce groups as well as develop staff who already work in their organisations. North Staffordshire Combined Healthcare NHS Trust is working closely with its local university to promote learning disability nursing courses, while Tees, Esk & Wear Valleys NHS Foundation Trust sponsored university courses for its staff during the period that central funding was not available, and has also made use of the apprenticeship levy to recruit and train staff..
Many of the trusts are also focusing on ensuring their staff are trained in PBS, which is an evidence-based approach recognised as best practice in supporting people with a learning disability and behaviours that challenge. Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust and Tees, Esk and Wear Valleys NHS Foundation Trust are two trusts with a particular level of expertise in PBS and are part of a regional programme delivering PBS training to staff in community teams and specialist inpatient services so they are able to offer PBS to their service users in addition to a range of other specialist interventions.
Raising awareness, upskilling staff and embedding reasonable adjustments
Trusts highlighted that they are taking organisation-wide approaches to raising awareness, upskilling mainstream staff and embedding reasonable adjustments. A number have implemented the Green light toolkit, which provides a framework to help mental health services adequately respond to the needs of people with a learning disabilities and autistic people, including by making reasonable adjustments. Implementation of the framework involves an annual audit that provides ongoing monitoring of quality improvements. Cumbria, Northumberland Tyne and Wear NHS Foundation Trust is now including the work of the Green Light Toolkit in their embedding of NHS Improvement’s Learning Disability Improvement Standards (2018).
Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust and Tees, Esk and Wear Valleys NHS Foundation Trust are two trusts with a particular level of expertise in PBS and are part of a regional programme delivering PBS training to staff in community teams and specialist inpatient services so they are able to offer PBS to their service users in addition to a range of other specialist interventions.
Kent & Medway NHS and Social Care Partnership Trust has embedded awareness raising and training initiatives across its organisation, and has a learning disability multi-disciplinary team that works to support staff in general mental health services to plan care and provide the right support to people with a learning disability or autistic people so their individual needs can be met within mainstream services when this is the most appropriate setting.
Gloucestershire Health and Care NHS Foundation Trust has organised a large-scale, interactive event called The big health check day during learning disability awareness week for the last 11 years, which has involved people with a learning disability in a range of sporting and other activities. This year’s event had to be cancelled due to the COVID-19 pandemic, but the trust created this newsletter and put on a range of other activities as a virtual alternative.
Responding to the challenges presented by Covid-19
Trusts providing mental health, learning disability and autism services have been working hard to maintain services and best meet people’s needs during the pandemic, despite the significant challenges presented by COVID-19.
Those delivering high-quality care for people with a learning disability and autistic people have focused on maintaining levels of meaningful activity for individuals by delivering inpatient rehabilitation, therapy and social activities on wards as well as virtually. They have also been communicating regularly with staff and service users, via emails and their websites as well as through co-produced resources and information packs, to ensure people have accessible, accurate and up to date information about COVID-19 and what the trust is doing in response.
South West Yorkshire Partnership NHS Foundation Trust has highlighted that communication during the pandemic has been essential and it has continued its work to ensure all communication is accessible and all information is easy to read: public posters, leaflets and information have all been co-designed with service users in an easy read format. The trust has also promoted its translation service and provided translated information to staff, service users, carers and families – the people most impacted by the virus. Further examples we have come across include daily video updates produced by experts by experience and health and social care partners from across the North West, and 14 videos created by Surrey and Borders Partnership NHS Foundation Trust that look at aspects of the virus and social distancing; help people to understand and deal with anxiety; and support people to plan their day and give ideas for activities to do while at home.
Trusts have also looked to facilitate visits for their most vulnerable service users where possible, with visitors supported to wear personal protective equipment (PPE), and supplied computer tablets and smartphones for service users to use to keep in contact with their friends and family more broadly. Tees, Esk and Wear Valleys NHS Foundation Trust has also been supporting relatives on a 1:1 basis to be able to use the digital solutions the trust has implemented for the pandemic period, while Berkshire Healthcare NHS Foundation Trust has developed a tool to help individuals caring for people with a learning disability who are displaying symptoms commonly associated with coronavirus.
Tees, Esk and Wear Valleys NHS Foundation Trust and Mersey Care NHS Foundation Trust are among a number of trusts we are aware of that has taken a flexible and compassionate approach to the application of restrictions set out in national guidance to keep service users and staff safe, and set up an ethics committee to support decision making when there are particularly difficult choices to make. A service user and executive and non-executive directors sit on the ethical ‘cell’ Mersey Care NHS Foundation Trust set up for the pandemic period to look at and maintain the rights of service users and provide appropriate challenge to any clinical decisions being made as a result of national guidance. The cell commissioned a piece of work to look at the impact of isolation on service users and what could be done to minimise it, which has informed the development of guidance and a separate standard operating procedure around isolation, which uses a general citizens approach and helps balance people’s human rights with maintaining everyone’s safety during this time.
Tees, Esk and Wear Valleys and Mersey Care NHS Foundation Trust are among a number of trusts we are aware of that has taken a flexible and compassionate approach to the application of restrictions set out in national guidance to keep service users and staff safe, and set up an ethics committee to support decision making when there are particularly difficult choices to make.
Mersey Care NHS Foundation Trust has also built in an additional, independent process using mental health act (MHA) manager reviews when there are service users that are finding it difficult to self-isolate, and is also working to supply independent advocates with uniforms and PPE to be able to get them back onto their wards given the crucial role they play in supporting service users. The trust is also looking to implement new interventions, such as employing physician associates in primary care networks, to fill gaps it found in annual health checks during the pandemic period, which it will be evaluating, taking learning back to the system and widening the scopes of if effective.
In order to meet the rising needs of individuals who may present with behaviours that challenge, Gloucestershire Health and Care NHS Foundation Trust and Gloucestershire County Council have worked together to make positive behaviour support consultation clinics available to staff teams or families to support them to offer the opportunity for individuals they support to reflect upon current circumstances, and develop ideas and proactive strategies to best meet the individual’s needs in order to improve quality of life and reduce the need for restrictive interventions. In response to COVID-19, these clinics are currently conducted using video calls and the remit has been broadened to reach the needs of not only those described as displaying these behaviours but anyone with a learning disability who could benefit from some early intervention and advice.