³ÉÈË¿ìÊÖ

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:

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 /chamber-and-committees/written-questions-and-answers

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.

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 , 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:

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:

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 , 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 , which was published on 13 July 2022 for further detail.

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 and comprise: