Neurological care and support: framework for action 2020-2025

This Framework

1. As part of our ambition to help people improve their health and wellbeing, we want everybody with a neurological condition to live well. We listened to your views about priorities and challenges, and In September 2017 the First Minister announced we would develop Scotland’s first National Action Plan on Neurological Conditions.

2. During 2018/19, we worked with the National Advisory Committee for Neurological Conditions (NACNC)^[1], the Neurological Community and across the Scottish Government and its partners, to produce a draft National Action Plan. Now retitled: ‘Neurological Care and Support in Scotland – A Framework for Action’, this recognises the need to make improvements across health and social care and that the implementation of actions will evolve over the duration of the Framework.

3. This Framework sets out a vision for driving improvement in the care and support for those with neurological conditions in Scotland. Throughout this document we have used ‘Neurological Community’ to mean people living with neurological conditions, their families and carers, and those who provide care and support, (practitioners, clinicians, academics, NHS Boards, Integration Authorities, the third and independent sectors).

4. We would like to acknowledge the individual contributions of leadership and support in developing this Framework. In particular the Project Team: Dr Richard Davenport, NHS Lothian; Susan Walker, NHS Greater Glasgow and Clyde; Stephanie Fraser, Bobath Scotland; Dr Jenny Preston MBE, NHS Ayrshire and Arran; Gregory Hill-O’Connor, Health and Social Care Alliance Scotland; Becky Duff, Neurological Alliance of Scotland, Gerard Gahagan, Neurological Alliance of Scotland and Scottish Government officials - Kirsty Forsyth, Jemma McGuffie, Anita Stewart and Colin Urquhart. Also to recognise the valuable input from members of the National Advisory Committee for Neurological Conditions, the Lived Experience Project Team, Healthcare Improvement Scotland, NHS Information Services Division and numerous policy colleagues from across different policy areas within the Scottish Government.

Scope

5. The Framework is focused on adults (16 years and older, although we recognise transition for young people into adult services can occur at different ages depending on circumstances). There is separate work ongoing within the Scottish Government considering how best to support children and young people.

6. There are also existing separate strategies and policies including Stroke^[2], Dementia^[3], Mental Health^[4], Learning Disabilities^[5] and Augmentative and Alternative Communication (AAC)^{[6, 7]} and Rare Diseases^[8] that have clear links to this Framework especially in relation to care and support to live well in the community. This Framework should be considered complimentary to support positive impacts in these areas. We will develop links across policies and look to close gaps where populations are not currently provisioned.

7. We recognise the importance of other policy areas such as welfare, education, housing and employment to drive independence, health and wellbeing. Whilst these issues are addressed in other government policy and are not the focus of this Framework, we will identify relevant links during implementation.

Developing the Framework

8. We have adopted a co-production approach with the Neurological Community to ensure people with lived experience, and their families and carers, are at the centre of this Framework’s creation, and we will continue this engagement during implementation. The following activities have so far been undertaken:

a. A Lived Experience Project^[9] to gather views and priorities of people living with neurological conditions, and their families and carers;

b. A study by the NHS Information Services Division (ISD)^[10] of available data to investigate how many people in Scotland are living with different neurological conditions;

c. A survey Mapping Neurological Services in Scotland 2017/18^[11] to understand the current care and support, existing gaps in provision, and identifying examples of good practice and priorities for improvement;

d. Literature reviews on Establishing Best Practice in Neurological Service Delivery and the Ideals of an Action Plan, and Person Centred Care and
Self-Management;^{[12, 13]}

e. Consideration of the Welsh Government’s Neurological Conditions Delivery Plan^[14], existing frameworks such as the House of Care Model^[15] for long term conditions, the National Care Framework for Huntington’s Disease^[16], the Active and Independent Living Programme (AILP) Logic Model Version 7^[17], and some of the models described in Improving Care for People with Long Term Conditions: a review of UK and International Frameworks^[18]; and

f. A series of national engagement events involving key stakeholders from across the Neurological Community, as well as researchers and industry.

9. The diverse experience of those with neurological conditions has been highlighted; this variation is influenced by many factors including geographical location, cultural perceptions and the condition/symptoms people experience. While some felt care and support works well for them, across Scotland there is scope for improvement.

10. The Framework aims to support Integration Authorities, NHS, the third sector and other organisations to build on what already works well, to identify and address gaps in provision, to challenge the more traditional models applied in some areas that may not be providing the best solutions and to introduce innovative ideas to drive up standards of care and support.

Implementation of the Framework

11. This Framework is ambitious and challenging. It has the potential to significantly improve the independence, health and wellbeing of people with neurological conditions.

12. There is wide support for the commitments in the Framework to achieve our collective vision and we recognise work will need to cross boundaries to co-ordinate action.