Chamber and committees

Commitment 13 in the Neurological Care and Support: Framework for Action 2020-2025 relates to the support of research into neurological conditions

Action to support Commitment 13 of the Neurological Care and Support: Framework for Action 2020-25 is detailed in the response to Parliamentary Question S6W-13711 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

I refer the member to the answer to question S6W-13687 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

I refer the member to the answer to question S6W-13700 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

On 13 December 2022 we published a report of the estimated prevalence of 28 specific neurological conditions: Neurological Conditions: estimating the prevalence in Scotland of selected conditions using GP and Hospital Admissions datasets - gov.scot (www.gov.scot) .

The work was initiated by the Scottish Government and supported by Public Health Scotland (PHS). Estimates were derived from GP recorded diagnoses and hospital admissions data.

The report addresses the commitment in the Neurological Care and Support: Framework for Action 2020-2025 to develop more accurate epidemiological data.

Undertaking this work has enabled us to begin looking at how neurological diagnoses are recorded in health and care records, and how we gather and report prevalence.

The Scottish Government funds health and care research largely through the Chief Scientist Office's two response mode grant committees: https://www.cso.scot.nhs.uk/grant-funding/response-mode-funding-schemes/

These meet twice per year and their role is well-known across the health and care research community in Scotland. Applications on qualitative research on the impact of living with a neurological condition are welcomed. Any such applications would go through the CSO's standard independent expert review process to enable funding decisions to be made.

The Chief Scientist Office partnered with the Department of Health and Social Care and the Medical Research Council to fund a James Lind Alliance Priority Setting Partnership (JLA PSP) on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). This used standard JLA methodology to work with clinicians, patients and carers to identify the most important areas for research. The outputs of the ME/CFS PSP were published in May 2022 and represent an important resource for the ME/CFS community, together with researchers and research funders:

https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/

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.