Chamber and committees

This work was agreed in February 2020 however was subsequently paused due to capacity issues related to the COVID-19 pandemic. It will be further considered by the National Advisory Committee for Neurological Conditions alongside our emerging priorities for implementation of the commitments within the Neurological Care and Support: Framework for Action 2020-2025 .

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-13707 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.

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.

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

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/

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

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)

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.