PROVISION OF A DEDICATED BUILDING-BASED DAY CARE FACILITY IN LEICESTERSHIRE FOR PEOPLE AGED 19 AND OVER WITH PROFOUND AND MULTIPLE LEARNING DIFFICULTIES

 

CASE STUDY REPORT

 

Purpose of Report

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This Case Study Report summarises the actions taken by the PMLD Parent-Carers Group in seeking to find a practical solution to address identified gaps in the provision of day care services for young adults aged 19 and over in Leicester and Leicestershire with Profound and Multiple Learning Difficulties (PMLD), who are at the most severe end of the PMLD spectrum in terms of their cognition, social development and mobility and also have complex health needs.

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Introduction

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This report sets out the actions undertaken by a group of parents in Leicester and Leicestershire to address identified gaps in the market for the provision of day care and short break respite services for young adults at the most severe end of the PMLD spectrum, in terms of their cognition, social development and mobility. Steve Dibnah, founder of Pentuple Consulting is also a member of the PMLD Parent-Carers Group (his daughter is at the most severe end of the PMLD spectrum and was 16 at the start of this process). Upon joining the Group, he was able to use his professional skills and expertise to provide leadership and drive the Group forward to make something happen. He set out a course of action and manage the project on behalf of the Group, including leading on engagement with the public sector and private providers, writing reports, preparing a business case and action plan, together with marketing collateral for the project. 

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This Case Study provides a specific example of the typical difficulties experienced by many individual parent-carers with children with profound and multiple needs who are unable to find appropriate day care and short break respite services once their child has left school. It also highlights how little influence individual parent-carers have in practice on the health and social care market, even when their children are awarded significant resources through personal health budgets to meet identified needs.

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Most importantly though, this Case Study highlights what more can be achieved by bringing together parent-carers with similar experiences, passions and needs and helping them to work more effectively together and facilitate a more collaborative approach with the public sector and private care providers. By agreeing to work together and pool relevant parts of their children’s personal health budgets, this provided the Group with a much stronger voice and greater potential purchasing power than they could ever have achieved individually to influence the market, encourage the entry of new providers and help bring about innovation in the design, funding and delivery of health and social care services. Above all, this Case Study provides an excellent example of a much more ‘joined-up’ approach to ‘personalisation’, which can deliver solutions that achieve better outcomes for all – providers, funders and service-users.

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Background

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People with PMLD are amongst the most disabled and vulnerable individuals in the community and require lifelong packages of support to meet a complex and wide range of needs in terms of their cognition, social development and mobility, as well as enable them to engage with their world, achieve their potential and ensure their lives go beyond being `cared for`.

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Through informal networking amongst parent-carers of children at the most severe end of the PMLD spectrum in Leicester and Leicestershire, it was apparent that many of them shared the same experiences and concerns regarding the lack of continuity of support, services and facilities for their children after they left school at the age of 19.

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Amongst their common concerns was their shared experience of facing a ‘cliff edge’ where they suddenly found the majority of services and therapies their children had experienced whilst attending school, such as structured and meaningful activities each day and short breaks respite services, suddenly disappeared once their children left school at aged 19. They all felt there was a lack of appropriate building-based day opportunities and short break respite services in the local area capable of providing suitable services and support to meet the complex needs of their children after the age of 18. The provision of follow-on college places for special needs students after leaving school has been reduced to only three days a week and in many cases stopped after two years. As a result of the lack of suitable building-based day care, many parent-carers were having to accept a solution of last resort and employing two personal assistants to care for their child at home on those days not at college and during the long college holidays. This solution is not appropriate for many with more complex and profound needs who require a much more structured day filled with stimulating activities and interaction with their peers to enable them to lead meaningful and fulfilling lives.

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The prevailing social care policy priorities of ‘personalisation’ and promoting ‘care in the community’ has resulted in many public sector building-based day care facilities being closed and private providers focusing on using buildings as a base from which to access the community, rather than provide intensive support facilities within the buildings. Such support is not appropriate for those at the most severe end of the PMLD spectrum, who require access to structured days and stimulating and meaningful sensory based activities to keep them engaged. access high quality and meaningful activities, services and therapies throughout their lives – and not just up to the point they leave school.

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PMLD Parent-Carers Group

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In response to these shared experiences and concerns, a group of parent-carers of six young people aged 16 to 23 who are at the most severe end of the PMLD spectrum, formed the PMLD Parent-Carers Group. It provided an opportunity for them to come together, share their experiences and work in a more coordinated way to secure the services and support their children and others with similar needs in Leicester and Leicestershire. The majority of those young adults in this Group were already in receipt of a personal health budget and the responsibility was on each individual parent-carer to find appropriate services and support for their child.

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The primary aim of the Group was to develop a common understanding of the key issues, concerns and needs of this specific group of young adults and engage in a constructive dialogue with local authorities, the NHS and private care providers. The purpose of this dialogue was to raise awareness of the specific needs of this group of young adults, draw attention to current gaps in the market for appropriate day care and short break respite services and work with them to identify a range of funding and delivery options for the provision of a dedicated PMLD facility.

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The Group also sought to make the case for a new building-based facility on the grounds it would create economies of scale and deliver better value for money for the provision of care. Instead of each young adult requiring the employment of two personal assistants throughout the day if cared for at home, within a shared facility each young adult would only need one carer full time and a small number of ‘floating’ staff to help out with moving and handling all of service users.

Report on the Case for a New PMLD Day Care and Short Breaks Respite Service.

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The initial action undertaken by the Group was to prepare a detailed report setting out the case for the provision of a new form of service to provide dedicated day care and short break respite for young adults at the most severe end of the PMLD spectrum in Leicester and Leicestershire. The purpose of this report was to stimulate a constructive dialogue and develop closer engagement, cooperation and collaboration between the Group and the relevant public services and private providers of health and social care services to deliver viable and sustainable solution.

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In summary, the Group’s report:

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• Identified the specific education, health and social care needs of those at the most severe end of the PMLD spectrum.

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• Outlined the current experiences and key concerns of the Group, in terms of accessing appropriate day care opportunities and short break respite services for this group of young adults.

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• Presented evidence from the results of the Group’s informal assessment of day opportunity services and short break respite services currently available in Leicester and Leicestershire, in terms of their capacity to meet the specific and complex needs of this group of young adults.

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• Highlighted specific market gaps in the provision of these services to meet the needs of this group in Leicester and Leicestershire. 

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• Identified the broad scale of ‘hidden’ demand for these type of services in Leicester and Leicestershire.

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• Highlighted failings in the ‘transitions’ process from Children’s to Adult Services and a lack of awareness amongst public services of the specific needs and requirements of this group of young adults.

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• Proposed a model solution for the provision of a dedicated building-based day care facilities and short breaks respite service, setting out a vision of what meeting the needs of this group of young adults would actually look like, as well as the key objectives, services, facilities and therapies required.

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• Identified a range of funding and delivery options, including a “Public-Private-People” partnership approach to develop a closer working relationship between the public sector, private providers and parent-carers and a more collaborative approach to finding an appropriate solution.

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Engagement with Local Authority and NHS Services

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During the preparation of the report, the Group approached senior officers within Leicestershire County Council’s Adult Social Care and Adult Learning Services (LCC) and staff within the Leicestershire and Rutland NHS Partnership Trust (NHS) and the Clinical Commissioning Groups for Leicester and Leicestershire. The aim being to establish a dialogue with relevant health and social care services and secure their commitment to working with the Group.

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The Group was able to hold a number of preliminary consultation meetings with officers from LCC and staff from the NHS Trust and CCGs. It was then able to present its report and a series of recommendations on potential delivery models at a meeting on 2 November 2016 attended by both organisations.

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Following consideration of the Group’s report and its recommendations and subsequent discussions with the Group, the County Council confirmed that it would provide support to the Group in the form of facilitating a Soft Market Test to establish the level of interest from the market for providing these services on behalf of the PMLD Parent Carers Group. However, the County Council would not commit to undertaking any formal procurement of those services.

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The NHS Trust welcomed the approach of parent-carers working together and pooling personal health budgets in this manner and would work in a supportive way to help facilitate such an action. It also agreed to provide support on this matter within relevant working groups established to look at ways to improve coordination and cooperation between those responsible for personal health budgets and personal (social care) budgets.

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Soft Market Test

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The County Council worked with the Group to prepare an outline service specification, based on the model solution proposed by the Group in its report. It then instigated a soft market test as agreed and invited private providers to respond to the outline service specification. The soft market test generated expressions of interest from 11 private providers. The Group selected six providers and invited them to present their proposals at a half day workshop hosted by the County Council in June 2017. Following the workshop, the Group shortlisted three providers and held more detailed discussions with each of them. Following this process, the Group was then able to identify its preferred provider.

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Action Plan

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Following the selection of the preferred provider, the Group held a series of business planning meetings with the selected provider. Arising out of those discussions, it was agreed that the new service should initially aim to provide for the equivalent of six full time places across a five day week, providing 30 day ‘slots’ a week. Service users would be able to book in day slots. The Group agreed to prepare an Action Plan setting out the steps to be taken to prepare a Business Plan that would be presented to the provider’s main Board for approval to move forward with the development of the new service. It was also agreed between the Group and the provider that consideration of a short breaks respite service would be deferred until the day care service had been established. This was to focus activity on finding premises for the day service and not be bound by the need to find either suitable premises for both activities or two separate premises.

The Action Plan produced by the Group set out a range of tasks to be delivered by the Group and the private provider. These tasks included:

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• Awareness Raising:

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• Preparing a database of contacts of potential service-users, parent support groups and forums.

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• Preparing an Information Leaflet on the proposed service and distributing it widely across Leicester and Leicestershire, using social media, school websites, parent groups and forums, as well as printed media.

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• Engaging with all Special Schools in Leicester and Leicestershire, and relevant health and social care professionals to brief them on the proposed new service.

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• Attending relevant Public Events and Exhibitions to network with other potential service-users’ families.

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• Evidence Building:

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• Undertaking a market research exercise to provide more evidence of the potential interest in the new service from parent-carers of children who are at the most severe end of the PMLD spectrum.

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• Preparing a Registration of Interest Form and circulating it widely to enable potential service users to express an interest in the new service.

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• Undertaking desk top research to provide additional supporting evidence on the potential short term and long term demand for the new service  amongst SEN pupils aged 5-19 currently attending schools in Leicester and Leicestershire and across adjacent areas of the East Midlands identified with PMLD as their primary type of need, and in particular those currently in Years 12, 13 and 14 within Leicester and Leicestershire Special Schools, whose needs may correspond to those supported by the new Service.

 

• Business Plan:

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• Preparing a Business Plan for submission to Board to:

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• Agree an indicative budget for building purchase/rental, any required adaptations, recruitment and training of staff and purchase of appropriate equipment.

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• Agree an indicative service budget to account for all operational running costs for the new service.

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• Agree estimated daily service cost for individual service users.

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• Agree an outline service user weekly support plan/timetable.

 

• Premises Search:

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• Identifying area of search for the new premises, agreeing specific building requirements to operate the required service and engaging with local estate agents.

 

Outcome of Awareness Raising Exercise

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The Group undertook a market research exercise across Leicester and Leicestershire to establish potential interest from potential service users in the area. This involved preparing a registration of interest form, an Information Leaflet about the new service, a social media campaign, engagement with parent groups, special schools, health and social care professionals.

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Following the market research exercise, registration of interest exceeded the weekly places to be made available. A total of 30 day ‘slots’ a week was agreed as the initial scope for the new service. The results of the market research returned interest in a total of 44 ‘slots’ per week, therefore, over-subscribing on the initial number of laces to be made available. As a result, the Board was sufficiently satisfied to agree to proceed as outlined in the Business Plan.

 

Current Situation

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The search for suitable premises in the preferred location has proved to be the most difficult aspect of the project to date. The search for premises continues.