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I refer the member to the Neurological Care And Support: A Framework For Action 2020-2025 – Midpoint Progress Report , which was published on 13 July 2022. This report provides an update on the progress under each of the five aims in the Neurological Care And Support: A Framework For Action 2020-2025.

Specifically, page 13 of the report details a project we funded to develop principles of good transition across the lifespan of people with neurological conditions, using a range of methodologies.

More widely, Scottish Government will introduce Scotland’s first National Transitions to Adulthood Strategy in this Parliamentary term to ensure there is a joined-up approach to supporting our young people with disabilities as they make the transition to adult life. The scope of the Strategy will be developed through engagement with people with lived experience of transitions in all areas of life, including health care. We will begin progressing external engagement on the Strategy in early 2023.

In 2022-23 we supported the Neurological Alliance of Scotland (NAoS) to produce three information resources to support key workers and carers to guide people with neurological conditions to access Self-Directed Support (SDS).

The resources have been produced in conjunction with Self-Directed Support Scotland and are designed to raise awareness and understanding of SDS amongst three groups who are in a position to support people living with a neurological condition to access it: health and social care professionals, voluntary sector workers, and parents/carers of children with neurological conditions.

The resources were published by the NAoS in January 2023 at www.scottishneurological.org.uk and comprise:

• Self-Directed Support for adults: Information for Health and Social Care Professionals
• Self-Directed Support for adults: Information for the Voluntary Sector
• Self-Directed Support for children: What to Expect - Information for Parents

Our National Workforce Strategy for Health and Social Care supports the remobilisation and recovery of health and social care services and sets out priorities for recruitment, training and retention. We anticipate that the Strategy will be used by workforce, service and financial planners across Health and Social Care at all levels.

Through this Workforce Strategy, and the NHS Recovery Plan, we are investing in staff so that they have the right skill mix and career progression opportunities.

Through our National Advisory Committee for Neurological Conditions, we are identifying priorities to strengthen the neurological workforce alongside the National Workforce Strategy, Remobilisation Plans and Rehabilitation Framework. We have scoped neurological workforce priorities and work has commenced to address these with a focus on nursing, allied health professionals (AHPs), neuropsychology and neurophysiology.

A Transforming Roles paper on Clinical Nurse Specialists (CNS) was published in 2021. Through the Centre for Sustainable Delivery, an expert group has been reviewing how existing CNS competencies for neurological conditions such as epilepsy, multiple sclerosis, motor neuron disease and Parkinson’s align to Transforming Roles with a view to identifying challenges or barriers to accessing training to develop and sustain this workforce.

We are testing with NHS neurology services in the West of Scotland, a workforce capacity planning tool for Allied Health Professionals that has been developed through the Healthcare Improvement Scotland Excellence in Care programme to help ensure staffing levels are in line with safe staffing legislation. An AHP Education & Workforce review has been completed with recommendations from that review being published early this year. Thereafter work will commence on an implementation plan.

We are undertaking work to better understand specialist service provision for people in Scotland with neurological conditions, through which we aim to develop an approach to ensure reliable information and workforce data is available and informs actions.

This will consider existing roles, specialities, subspecialties, and developments in advanced Health Care Assistants, key workers and third sector speciality regarding neurological care. The process will also align with relevant commitments from the Neurological Framework, Transforming Roles agenda and the National Workforce Strategy.

In 2019, we published a Neurological Care and Support – a National Framework for Action 2020-25 , with a vision to ensure everyone with a neurological condition can access the care and support they need to live well, on their own terms.

The aims include improving the provision of co-ordinated health and social care and support, developing sustainable workforce models and ensuring high standards of person-centred care.

Since October 2020 we have we have awarded £2.1 million across three rounds of funding to 35 projects by NHS Boards, Health and Social Care Partnerships and third sector organisations working to achieve better outcomes for people living with neurological conditions.

I refer the member to the Neurological Care And Support: A Framework For Action 2020-2025 – Midpoint Progress Report , which contains details of work to support personalised models of care.

I refer the member to the answer to question S6W-13690 on 23 January 2023. All answers to written Parliamentary Questions are available on the Parliament's website, the search facility for which can be found at https://www.parliament.scot/chamber-and-committees/written-questions-and-answers .

We have recruited a multi-disciplinary cross-agency working group, including a broad spectrum of individuals involved in planning and commissioning services, to develop and implement a quality assurance programme for the General Standards for Neurological Care and Support. This has been led by Healthcare Improvement Scotland and will support health and social care providers to identify what they are doing well and where they can improve.

Undertaking this work will identify areas of good practice and improvement across NHS Scotland and help to drive forward better standards of care for people with neurological conditions.

We are also in the process of engaging with local leads in all Scottish health boards and Health & Social Care Partnerships, and exploring with them local priorities and scope for establishing leadership groups and a national practice sharing forum for neurology.

The Scottish Health Research Register and Biobank (SHARE) is funded by the Chief Scientist Office. SHARE has been established to create a register of people aged 11 and over and resident in Scotland who are interested in participating in health research studies, including trials in neurological conditions: https://www.registerforshare.org .

The NHS Research Scotland Neuroprogressive and Dementia Research Network is funded by the Scottish Government to deliver cutting edge clinical research in Neuroprogressive conditions and Dementia across Scotland. For example, the network has been key to the delivery in Scotland of the UK-wide MND SMART Trial, with over 200 of the 400 total trial participants as of October 2022 enrolled in Scottish centres https://www.mnd-smart.org.

In 2019, we published a Neurological Care and Support – a National Framework for Action 2020-25 , with a vision to ensure everyone with a neurological condition can access the care and support they need to live well, on their own terms.

Commitment 12 of the Framework aims to gather better data regarding neurological conditions. The Scottish Epilepsy Register project, funded through the Framework, is focussed on improving data collection and patient safety and driving up standards of care. We are exploring with NHS National Services Scotland proposals to scale up and consolidate the work of the Register, which may ultimately serve as a replicable model for other neurological conditions.

Scottish Burden of Disease data is also available on a number of neurological conditions including epilepsy, multiple sclerosis and Parkinson’s disease: Scottish Burden of Disease (shinyapps.io)

I further refer the member to answer S6W-13707 and S6W-13708 on 23 January 2023. All answers to written Parliamentary Questions are available on the Parliament's website, the search facility for which can be found at https://www.parliament.scot/chamber-and-committees/written-questions-and-answers

Public-facing information about neurological conditions is being developed for the NHS Inform website, to support education and self-management.

New or revised pages have been published on Functional Neurological Disorder, Multiple Sclerosis, Huntington’s Disease, Transverse Myelitis, Migraine, Myasthenia Gravis, Post-Polio Syndrome, Epilepsy, Motor Neuron Disease, and on eight types of Muscular Dystrophy. Further pages currently in development include Cerebral Palsy, Ataxia, Tourette’s Syndrome, Multiple Spinal Atrophy, Parkinson’s Disease, Dystonia and Progressive Supranuclear Palsy.

Through the Neurological Care and Support – a National Framework for Action 2020-25 , we have funded a number of projects which have developed or are developing information to support people to better understand their neurological conditions. I further refer the member to the Neurological Care And Support: A Framework For Action 2020-2025 – Midpoint Progress Report , which was published on 13 July 2022 for further detail.

This information is not held centrally. This is a matter for Skills Development Scotland and NHS Boards.