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Through the , Scottish Government and the Centre for Sustainable Delivery (CfSD) are improving referral pathways. The CfSD continues to work with neurological services to support the appropriate adoption of Active Clinical Referral Triage (ACRT) which ensures patients receive the right care in an appropriate setting, and Patient Initiated Review (PIR) which puts patients at the centre of their care.

The CfSD is working with Public Health Scotland towards capturing data in relation to ACRT and Discharge PIR, which will provide a better understanding of the scale, spread and potential further opportunity of these approaches.

The CfSD Neurology Specialty Delivery Group are developing a number of GP fact sheets for common neurological symptoms designed to support clinical triage by ensuring patients access the correct pathways in timely, robust and appropriate manner. These resources are intended to support good communication between secondary and primary care. They have been developed by a multi-Board expert group of primary and secondary care clinicians and are currently being prepared for national use.

Through our we are also funding condition-specific pathway work, in particular regarding Functional Neurological Disorder and migraine.

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 .

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:

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:

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:

I refer the member to the , 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.

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: .

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

In 2021 we supported the Neurological Alliance of Scotland (NAoS) to produce three new ‘What to Expect’ information guides for carers of people with neurological conditions. These guides include information on carers’ rights under the Carers (Scotland) Act 2016 and comprise:

The guides were endorsed by the Coalition of Carers and are available at the NAoS website:

We are currently supporting the NAoS to undertake a project in early 2023 to work with carers centres assessing current resources and identifying gaps that still need to be addressed regarding information, training and signposting.

In 2019, we published a , 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:

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 /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 /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 /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:

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: