Chamber and committees

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.

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 further refer the member to the Neurological Care And Support: A Framework For Action 2020-2025 – Midpoint Progress Report , which contains case study examples of innovative projects we have funded which test and evaluate new models of care. A list of funded projects is also available on the Scottish Government website: Neurological Framework Funding: list of organisations funded - gov.scot (www.gov.scot)

I refer the member to the answer to question S6W-13716 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

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

Scottish Government has previously invested £180,000 in the development of a national care framework for Huntington’s Disease, with a view to the potential adoption of this approach in other neurological conditions. Our National Advisory Committee for Neurological Conditions will consider whether development of frameworks for additional neurological conditions should be prioritised as part of our ongoing implementation of the commitments within the Neurological Care and Support: Framework for Action 2020-2025 .

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.

The Chief Scientist Office is part of the Scottish Government Health and Social Care Directorates. Detail on the work of the Chief Scientist Office is available online: https://www.cso.scot.nhs.uk.

Research studies taking place in NHS Scotland and funded by members of the Association of Medical Research Charities are eligible for support through the NHS Research Scotland infrastructure arrangements: https://www.nhsresearchscotland.org.uk/services.

The NHS Research Scotland Neuroprogressive and Dementia Network is funded by the Scottish Government to promote a culture of clinical research in neurological and dementia research across Scotland and to support patient recruitment into high quality studies from both rural and urban areas: https://www.nhsresearchscotland.org.uk/research-areas/dementia-and-neurodegenerative-disease.

The Centre for Sustainable Delivery (CfSD) are taking steps to introduce Flying Finish across NHS Boards, to benefit the workforce and the service. Work has already taken place to put in place a national Retire & Return policy within the NHS.

On 30 August 2022 the Interim National Arrangements on Retire & Return was announced, which offers a process that supports retiring employees to return to employment in their health board on a part time basis, should they wish to do so. The process enables retiring employees to continue employment that is suitable to them and the service, taking a person-centred approach which supports and manages the retirement in a tailored and individual way.

Scottish Ministers are already able to access advice and analysis which allows for the triangulation of workforce intelligence at national level. They are fully supported in this by other agencies and organisations, including NHS Scotland health boards and NHS Education for Scotland, which publishes quarterly official workforce statistics and provides associated analysis on the NHS Scotland workforce.

The Scottish Government also continues to work closely with NHS Boards and Health and Social Care Partnerships to improve workforce planning, including the data and intelligence required to carry this out effectively at a local level.

The Scottish Government has established a Workforce Data Information and Intelligence Improvement Programme to support further improvement in data collation and evidence triangulation. This programme is focused specifically on improving the quality and granularity of existing data sets, alongside considering the requirements for gathering new or different data to support better decision making, workforce and service planning.

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.

We worked with Healthcare Improvement Scotland (HIS) to facilitate an online learning event in August 2021 to raise awareness of and build confidence amongst health and social care staff in Anticipatory Care Planning for people with neurological conditions.

This was attended by over 280 health and social care professionals working with people affected by neurological conditions, including specialist nurses and Allied Health Professionals.

The event explored how the principles of good Anticipatory Care Planning can be adapted for different neurological conditions, including for purposes much broader than end of life care.

We created a Neurological Anticipatory Care Planning webpage with HIS featuring useful tools for professionals and videos of the webinar presentations: ACP and neurological conditions - ihub | Health and social care improvement in Scotland - Anticipatory Care Planning and Neurological Conditions