Neurological conditions national action plan 2019-2024: draft for consultation

Developing the National Action Plan

15. In preparation for the plan, NACNC advised Scottish Government to commission several overlapping pieces of work, Annex C. NACNC was determined to have people with lived experience and their families and carers at the centre of the plan; as such their engagement as key stakeholders has been paramount. The work commissioned included the following:

I. NACNC asked the Health and Social Care Alliance and the Neurological Alliance of Scotland to work together to gather the views, and priorities, of people living with neurological conditions, and their families and carers. The Health and Social Care Alliance presented the report Priorities from the Lived Experience Project^[8] to NACNC.

II. NACNC needed to know more about how many people in Scotland are living with different neurological conditions, so commissioned NHS Information Services Division (ISD) to investigate, and provide data relating to use of NHS Services. ISD provided a report on the complexities of determining prevalence estimates for neurological conditions - NACNC briefing on estimating prevalence of neurological disorders in Scotland from the Scottish Burden Of Disease study.^[9]

III. NACNC wanted to understand what care and support are currently available, and what innovative models of care there might be, either already in action or in development. NACNC conducted a survey Mapping Neurological Services in Scotland 2017/18 ^[10]. This survey described current care and support services and existing gaps in provision as well as identifying examples of good practice and priorities for improvement.

IV. NACNC considered the available evidence found through literature reviews on Establishing Best Practice in Neurological Service Delivery and the Ideals of an Action Plan^[11] and Person Centred Care and Self-Management.^[12]

16. The NACNC convened a National Action Plan Project Team, Annex D, to lead on the development of this plan. To evolve the plan, the project team also considered a logic model, and used the findings of the work commissioned, to develop the Vision and Aims of this plan.

17. NACNC considered existing frameworks such as the House of Care Model for long term conditions^[13], the National Care Framework for Huntington’s Disease^[14], the Active and Independent Living (AILIP) Logic Model Version 7^[15], and some of the models described in Improving Care for People with Long Term Conditions: a review of UK and International Frameworks^[16]. Furthermore, Scottish Government officials, who also sit on the NACNC, visited the Welsh Government to learn about their Neurological Conditions Delivery Plan^[17].

18. NACNC organised a series of national engagement events involving key stakeholders from across the Neurological Community; people living with neurological conditions, their families and/or carers, clinicians and practitioners from health and social care and support, third sector organisations, researchers and industry.

19. At all three engagement events the feedback highlighted the need for change. People felt treatment is “done to them” and want to be partners in their care. This requires support, both for health and social care professionals and individuals, to be able to shift the balance to a more equal relationship, good communication, and improvement in how care and support are delivered - if we are to meet the need to provide truly person centred care.