Transforming specialist dementia hospital care: independent report

1. Introduction

1.1 Introduction

This report is part of the consensus-based stakeholder response to the Mental Welfare Commission's report into specialist NHS dementia care in 2014. The independent review of the sector was commissioned by the Scottish Government, and makes recommendations on the modernisation of specialist NHS dementia care. This work was led by Alzheimer Scotland's National Dementia Nurse Consultant, a post that was jointly funded by Alzheimer Scotland and the Scottish Government.

Most people with dementia can be cared for in the community ^[d] throughout the illness. This requires a multi-disciplinary, professional, coordinated and planned approach to support those providing day-to-day care ^[e] . There will be a relatively small number of people with dementia at any one time who have acute clinical care needs that require specialist hospital care for a period of time. This will result from severe psychological symptoms of dementia or the combined influence of a co-morbid mental health condition.

However, an estimated 60 percent of current patients with dementia do not have this clinical need and could be more appropriately cared for in the community. This means the specialist dementia hospital population has a wide range of needs that cannot be appropriately accommodated alongside each other. It also results in resources being used inefficiently and does not facilitate skilled practitioners to deliver highly specialised interventions for people with an acute clinical need.

This report sets out a model of a modern specialist hospital unit based on quality of care for people with dementia who have intensive and complex clinical care needs and require high level expert care. It also provides an approach to building community capacity to support the safe transition for those who do not have a clinical need to remain in hospital and can be cared for in more homely settings in the community.

Going forward, the Advanced Dementia Practice Model (Alzheimer Scotland 2015) ^[f] provides the integrated and comprehensive evidence-based approach to support people in the community and ensure that people with dementia do not remain in hospital unnecessarily.

1.2 Background to report

The Mental Welfare Commission's ( MWC 2014) ^[g] review of dementia continuing care units identified serious concerns with quality of care, environments, access to multi-disciplinary professionals and adherence to legal requirements for providing care. A roundtable discussion ^[h] was hosted by Alzheimer Scotland in 2014 following on from this report to develop a better understanding of the issues and challenges and identify what could be done to remedy these.

The key outcome of this roundtable was the appointment of an Alzheimer Scotland National Dementia Nurse Consultant to undertake a review of NHS specialist dementia care environments. Ten NHS Boards ^[i] were included in this review, with 63 specialist care environments visited from a total of 92 with the purpose of:
1) evaluating the quality and appropriateness of specialist hospital care in dementia; and
2) developing an understanding of the issues around transition and discharge from hospital. The Nurse Consultant also carried out extensive consultation with key stakeholders, including people with dementia and families, as part of this process. The findings from this review are presented in full in Appendix 1 of this report.

The recommendations of this report are based on the findings of the review by the Alzheimer Scotland National Dementia Nurse Consultant. Improvements since the review have been explored in a smaller number of NHS Boards and are incorporated into the recommendations within this report.

The recommendations are also informed by the improvement programme of work from the Commitment 11 Quality and Excellence Specialist Dementia Care Group. This work has been ongoing since September 2014, with NHS Boards submitting their self-assessment and improvement plans to the Commitment 11 Group. This work has been continued through a programme led by Focus on Dementia ^[j] that is working with four individual specialist dementia hospital units across Scotland. Additional improvement has been delivered through the Promoting Excellence Framework (2011), with the Dementia Specialist Improvement Leads Programme being introduced to cascade enhanced and expert education and training to support change and improvement.

1.3 Context and legal framework for specialist dementia hospital care

The National Dementia Strategy for Scotland ^[k] is underpinned by the "Charter of Rights for People with Dementia and their Carers in Scotland" (2009) l. This includes ensuring that the human rights of people with dementia are respected, protected and fulfilled. The Charter also stipulates that people with dementia have the right to health and social care services provided by people with an appropriate level of training on dementia and human rights.

The Promoting Excellence Framework (2011) ^[m] takes this forward into practice through outlining the knowledge and skills required by health and social care practitioners. This is set out in four different levels of skill and knowledge determined by a practitioner's role and level of responsibility. There has also been focused attention and improvements in specialist dementia hospital provision through the Commitment 11 Group of the National Dementia Strategy (2013 to 2016) ^[n] .

Specialist hospital care in dementia sits within the principles and provisions of the Adults with Incapacity (Scotland) Act 2000 and Mental Health (Care and Treatment) (Scotland) Act ^[o] . The review by the Alzheimer Scotland National Dementia Nurse Consultant found that only a small number of patients are subject to a compulsory treatment order under the Mental Health (Care and Treatment) (Scotland) Act.

Whilst legislation and guidelines provide the framework for staff to work within, there is also a need for ongoing training and support in ethical decision making. There is unlikely to be a single right answer in any given situation and staff within specialist dementia hospital care require support in the complex ethical dilemmas that can arise (Nuffield Council on Bioethics 2009) ^[p] .

1.4 Outline of report

Section 2: People with dementia who need specialist hospital care

This section provides an understanding of when people with dementia may require specialist hospital care. It also presents current data on the number of people with dementia in specialist hospital environments and an outline of the Advanced Dementia Practice Model (Alzheimer Scotland 2015).

Section 3: Current approaches to specialist dementia hospital care

This section provides an understanding of current approaches to specialist hospital care in dementia. It provides a summary of the key findings of the review by the Alzheimer Scotland National Dementia Nurse Consultant. It also provides a synopsis from recent findings from the Mental Welfare Commission's visits to specialist dementia hospital environments.

Section 4: Transforming specialist dementia care

This section takes forward the issues and challenges outlined in the report and presents a blueprint for a specialist dementia unit through outlining the core specialisms and approach required. It also puts forward a case for a one-off transformational change through decommissioning and re-design of specialist dementia care across Scotland.

Section 5: Conclusion and recommendations

This section provides the concluding remarks and sets out a series of recommendations to guide the decommissioning and transformation process.