Neurological Care and Support in Scotland: A Framework for Action 2020-2025 - Final Report

Framework Achievements by Commitment

The Framework had the vision that everyone with a neurological condition will be able to access the care and support they need to live well on their own terms. This was supported by five Aims:

• Aim A: Ensure people and their carers are partners in their care and support
• Aim B: Improve the provision of co-ordinated health and social care
• Aim C: Ensure high standards of effective, person-centred and safe care and support
• Aim D: Ensure equitable and timely access to health and social care and support across Scotland
• Aim E: Build a sustainable neurological workforce for the future.

Seventeen commitments sit beneath these aims. This section describes delivery of the Framework. This was led by the Neurological Conditions Team at the Scottish Government. The National Advisory Committee for Neurological Conditions provided support and advice on prioritisation and in shaping the approach to Framework delivery.

The Framework was supported with £4.5 million of funding over five years. £2.6 million of this was awarded to projects that tested or developed innovative ways of delivering services for people with neurological conditions. This was awarded across four rounds of funding. Bids were assessed following an open application process. A total of 52 individual awards were made. When projects that received continuation funding to further progress work undertaken in a previous round are taken into account, a total of 43 projects were funded overall.

A number of programmes were also nationally co-ordinated by delivery partners such as the Centre for Sustainable Delivery, the Neurological Alliance of Scotland, Healthcare Improvement Scotland, NHS Education for Scotland, and the Scottish Government. This section outlines achievements under each commitment of the Framework and how the funded projects and nationally led work contributed this.

Section 3 describes the collective impact of the funded projects, including an overview of how they approached evaluation. Appendix 2 provides a full list of funded projects.

42 of the 43 projects have returned final reports describing what they achieved. Online links have been included to reports or resources developed, where available. Where project reports are not available online these can be made available by Scottish Government on request.

The project that did not submit a final report did not commence due to being unable to recruit suitable staff.

Aim A: Ensure people and their carers are partners in their care and support

Commitment 1: We will support shared decision making and personalised models of care and support.

We have:

• Funded a range of projects that deliver personalised models of care and support, including support for people with Parkinson’s, multiple sclerosis (MS), epilepsy, spina bifida hydrocephalus, cerebral palsy, acquired brain injury, and cross-condition projects.
• Enabled people with neurological conditions and their carers, to access services to improve wellbeing including counselling, peer support, condition appropriate physical activity, support for emotional wellbeing, and reducing social isolation.
• Enabled direct referrals between statutory sector services and the third sector such as Parkinson’s Connect in NHS Greater Glasgow and Clyde, and Thistle Wellbeing support in NHS Fife.
• Developed digital tools that make it easier for people with neurological conditions to communicate with clinicians and support workers, such as Spina Bifida Hydrocephalus Scotland and Quarriers, allowing them to access advice and support at times of greatest need.
• Supported the Care Inspectorate and NHS Ayrshire and Arran to develop a care network to create structured opportunities to inform changes using the views of people with lived experience through its Working together to support people living at home with neurological conditions.

Wellbeing projects used a range of qualitative evaluation approaches to demonstrate the direct impact on people using their services and were broadly able to demonstrate positive impact on mental wellbeing.

Commitment 2: We will work with stakeholders to raise awareness of the information and resources available on neurological conditions.

We have:

• Published 35 new and revised information pages on neurological conditions on NHS Inform.
• Awarded funding for other online information resources for patients and medical professionals such as Tailored Talks (all conditions), Functional Neurological Disorder (FND) – A Patient’s Guide to FND, Dissociative Seizures | Right Decisions, Learn About ME, and a Brain Injury Self-Management Programme | NHS Lanarkshire
• Supported the publication by the Neurological Alliance of Scotland and Stirling and Clackmannan Health and Social Care Partnership of a leaflet for professionals, Neuro conditions in the community outlining the impact of a neurological condition on people, and things to consider when providing support to them.
• Raised awareness of the Right Decisions Service – a ‘Once for Scotland’ source of digital tools that enables people to make safe decisions quickly and based on validated evidence, at our Neurological Conditions Network event in 2024.

Commitment 3: Local carer information and advice services know how to access the most relevant information and training for carers of people with neurological conditions.

We have:

• Supported the Neurological Alliance of Scotland’s development of Information Unpaid Carers and Professionals (March 2024) which lists neurological conditions from A – Z, with hyperlinks to the organisations that can support carers of people with that condition.
• Supported NAoS to develop three guides for carers (2021):
  • What to expect when you are new to caring
  • What to expect from Advocacy Services
  • What to expect when planning ahead
• Funded the Pain Association to develop and run courses for carers of people with neurological conditions to support them in managing many of the challenges associated with their role.
• Funded Promoting a More Inclusive Society (PAMIS) to provide training to carers and professionals on improving Postural care.
• Funded NHS Greater Glasgow and Clyde to pilot a Carers Academy approach as a means to supporting carers of people with Motor Neuron Disease (MND).

Aim B: Improve the provision of co-ordinated health and social care

Commitment 4: Ensure that the legislation, policy and guidance that Integration Authorities and the NHS use when planning and commissioning services are designed to support appropriate provision for people with neurological conditions.

Delivery of this commitment was aligned with legislation and formation of the National Care Service.

We have:

• Funded projects that developed approaches to support planning and commissioning of services by Integration Authorities and the NHS including, A collaborative of epilepsy organisations led by Quarriers developed Enabling social support for people with epilepsy which assists evidence-informed commissioning of sustainable social support for epilepsy.
• Revive MS – New Incremental Network/Collaborative Developments Towards A National MS Pathway
• Spina Bifida Hydrocephalus Scotland – integrated wellbeing pathway
• Cerebral Palsy Scotland and Progressive Supranuclear Palsy Association (PSPA) have developed resources that provide better information on the availability of appropriate services in different areas of Scotland.

Work on has also been undertaken on developing care pathways, discussed under Commitment 14.

Commitment 5: We will work with key partners across sectors, to embed the Principles of Good Transitions, as a good practice framework for transitions for people living with neurological conditions.

We have:

• Funded NHS Ayrshire and Arran, CP Scotland, and ARC Scotland to undertake a Literature Review and collaborative planning work on the impact of Good Practice in Transitions for patients with neurological conditions. This concluded that further work would be required to develop ‘a set of neurology specific guiding principles, a good practice framework and a model for evaluation of existing models of transition to inform best practice.’
• Funded projects such as Parkinson’s Connect, CP Link Directory and Midlothian Care Pathway which focussed on improving referral across different services.

Commitment 6: We will continue working together with others to deliver a national programme to support local reform of adult social care support. The full implementation of self-directed support is integral to the programme for adult social care reform.

We have:

• Supported the Neurological Alliance of Scotland, working with Self-Directed Support Scotland, to publish 3 guides on Provision of self-directed support for people with neurological conditions for health and social care professionals, third sector organisations, and for parents of children.

Commitment 7: We will work with Healthcare Improvement Scotland (HIS), Integration Authorities and the NHS to promote the implementation of anticipatory care planning, to ensure these plans are widely available and adopted by the services and people with neurological condition.

(Anticipatory Care Planning now referred to as Future Care Planning)

We have:

• Worked with HIS to facilitate an online learning event to raise awareness of and build confidence amongst health and social care staff in Future Care Planning (FCP), for people with neurological conditions, attended by over 280 people.
• Created an FCP and Neurological Conditions webpage, featuring useful tools for healthcare professionals and videos of the webinar presentations.
• Funded NHS Orkney to develop education sessions on initiating conversations on FCP for staff.
• Funded NHS Greater Glasgow and Clyde, through its Partnership Delivery Group, to improve uptake of FCP. A sample of over 200 patients across a range of long-term neurological conditions assessed just under 10% uptake of FCP across all conditions, with the lowest being within Duchenne (2/37, 5%). By recruiting initial FCP Champions within Atypical Parkinsons and Duchenne Muscular Dystrophy and working to understand the barriers to widespread adoption across clinical teams, by August 2023, FCP completion within the two target populations was over 80% ensuring often difficult discussions are now routinely embedded in the conversations that clinical teams have with the people they are supporting.
• Funded Strathcarron Hospice/Talking Mats to develop a visual framework to help people with neurological conditions express their views about FCP.

Commitment 8: We will work to improve the use of digital technology to ensure that integrated services seamlessly meet the needs of people with neurological conditions and those who provide care and support to them.

We have funded:

• Platforms that enable people to more easily access support or self-management resources. Examples of this include MS Society Wellbeing Hub, Quarriers Digital Inclusion project for people with epilepsy, Mid Argyll Lifeline Services support, Parkinson’s Connect.
• Better Patient/Clinician Information: e.g. Tailored Talks; Dissociative Seizures App, Neurosymptoms.org
• Education for Clinicians and Practitioners: Goal Setting – Action Planning training resource, Learn About M.E, NHS Lanarkshire ABI Learnpro.
• Support for Clinicians to Assess Patient Need: e.g. Spina Bifida Hydrocephalus Scotland myCarepod App; Epilepsy Scotland Mental Wellbeing Screening Tool
• Improvements in Safe and Timely Care/Availability of Research Data: Scottish Epilepsy Register.

Clinical Guidelines were published on conducting online consultations for people with neurological conditions and the appropriate circumstances for doing so. These are aimed at improving efficiency and the patient experience, particularly in remote and rural areas. Guidelines were developed for physicians and neuropsychologists and we facilitated a seminar for medical professionals and a seminar for AHPs on undertaking virtual appointments.

Commitment 9: We will support Integration Authorities and the NHS to improve services and support, with a commitment to evaluate and test generic/neurology community based multi-disciplinary team models and to test innovative ways of delivering health and social care, including new roles and new arrangements for co-ordinating care and support for people with neurological conditions.

An overview and further discussion of the projects funded through the Framework is provided across this report and overall analysis of the funded projects is provided in Section 3.

We have funded projects to support system wide collaboration and improvement including:

• NHS Tayside Breakthrough Series Collaborative
• Midlothian HSCP Person-centred Pathway Development
• NHS Greater Glasgow and Clyde Partnership Development Group.

In January 2024 two Regional Network Co-ordinators were appointed for east and west regions. We were unable to recruit a third co-ordinator for north region, so the two co-ordinators covered three regions. Due to emergency spending controls within Scottish Government contracts for the Network Co-ordinators were not renewed after 12 months.

Network Co-ordinator key achievements in these 12 months:

• Building relationships across 14 NHS territorial boards and Health and Social Care Partnerships through a series of one to one and collaborative meetings
• Supporting NHS boards in self-evaluation of Standards 1, 2 and 7 of the General Standards for Neurological Care and Support
• Analysing, assessing and producing a thematic report capturing key themes arising from the self-evaluation
• Hosting self-evaluation feedback sessions, network scene setting sessions, a national networking launch event and ‘Social Support Round Table’ event.

For the duration of the Framework we have communicated with stakeholders through:

• Publishing 15 editions of our quarterly newsletter to update on key developments and funding opportunities.
• Hosting six practice sharing sessions in 2022 and 2023 to provide funded projects with an opportunity to showcase what they have done.
• Undertaking regular evaluation and support meetings with all the funded projects.
• Engaging with stakeholders across the third and statutory sectors, including supporting ministerial meetings and visits.
• Including summary information on projects and links to final reports online, where available, on the Scottish Government’s website.
• Publishing, in 2022, a Midpoint progress report to update stakeholders on progress halfway through the Framework.

Commitment 10: We will work with the Neurological Alliance of Scotland and other stakeholders to explore the potential of national care frameworks and how these can inform neurological care and support.

We have:

• Supported the work of the Neurological Alliance of Scotland (NAoS) who have partnered Scottish Government to engage with stakeholders, including third sector organisations and carers.
• Explored options for extending the National Care Framework approach to two third sector organisations providing services for people with PSP and Multiple System Atrophy. A robust evaluation of the Huntington’s National Care Framework would inform any future decisions on adoption and value for money of this approach.

Aim C: Ensure high standards of effective, person-centred and safe care and support

Commitment 11: Develop a Quality Assurance programme that organisations can use to self-evaluate against generic neurological standards (and condition specific supplements) with peer review approach.

We have:

• Commissioned Healthcare Improvement Scotland to develop a Self-evaluation tool (available on request) for health and social care organisations for the 2019 General Standards for Neurological Care and Support. This was published in April 2023 followed by three education sessions.
• Requested, in June 2023 via Chief Executives, that NHS boards lead board-wide self-evaluation of Standards 1,2 and 7 during 2023-2024 and appoint individuals to lead this.
• Held sessions to support organisations completing evaluations, attended by representatives from 13/14 NHS boards as well as individual support meetings arranged with Network Co-ordinators.
• Received self-evaluations from 12/14 NHS boards
• Published a thematic report with boards committing to implementing improvement plans for neurology services.

Commitment 12: Improve the recording of neurological conditions in people’s routine health and care records.

The Scottish Epilepsy Register (SER) has demonstrated improved monitoring of people with epilepsy in NHS Greater Glasgow and Clyde, improving safety and timely intervention. This includes:

• Improved access to a specialist for women with epilepsy who become pregnant. This has increased from 1/3 to 100%, with most women seen in the first or second trimester.
• All women with epilepsy have an up-to-date eMHRA (risk awareness) form incorporated into the epilepsy dashboard. This allows the generation of reports and facilitates annual review.
• Services which have adapted to ensure review in a timely manner of high-risk patients identified through attendance at Accident and Emergency (A&E), and pathways created to facilitate referral to key services including mental health or addiction. Previously less than 50% of those attending A&E were reviewed by specialist services within six months, and poor medication adherence is noted in up to a third.
• As a direct result of data captured during the SER project, a study was undertaken on the impact the COVID 19 pandemic had on people with epilepsy. All-cause and epilepsy-related mortality reduced during the national lockdown. This highlights that epilepsy related mortality is potentially avoidable.

Scottish Government undertook a study Neurological Conditions: estimating the prevalence in Scotland of selected conditions using GP and Hospital Admissions datasets – gov.scot published in December 2022. This dataset covers general practices representing 72.7% of registered patients. Annual publication of national epilepsy prevalence data on Public Health Scotland’s visual data ‘dashboard’ commenced in June 2023. Implementation of a new GPIT system will enable more universal participation from GP practices in data collection with a 95% completion rate anticipated when the data request is re-run in early 2026.

Neurological Alliance of Scotland has undertaken two national patient experience surveys of people with Together for the One in Six published in May 2022 and Today’s Challenge, Tomorrow’s Hope published in July 2025. These provide a snapshot of progress over time with key areas that need to be addressed including mental health support, access to social care, and waiting times.

Commitment 13: We will support the neurological research agenda.

The Scottish Government through the Chief Scientist Office (CSO) has supported research to identify improvements in care and treatment for neurological conditions. This includes co-ordinating the Neuroprogressive Network which supports a wide range of clinical research studies in conditions including MND, Parkinson’s and Alzheimer’s conducted within the NHS, at Scottish Universities and in care home settings. These include observational studies, genetic studies, drug trials, questionnaire studies and brain tissue banking. Annual SG funding for the Network is more than £600,000.

Through the Neuroprogressive Network and direct funding from CSO we have supported the following:

• Doctorate study completed, looking at new and effective approaches to diagnosis and treatment of ME/CFS.
• Identification of the top 10 priorities for future research on ME/CFS through James Lind Alliance (published 2022); Explore the Top 10+ – ME/CFS Priority Setting Partnership .
• Future MS – personalised approaches to clinical management of multiple sclerosis.
• Around £900,000 of direct CSO funding of neurodegenerative disease research funding through grant and fellowship schemes since 2015.
• SPRINT MND/MS – CSO partnership with five Scottish Universities to put in place a cohort of PhD studentships in two neurological conditions for which there is a major unmet clinical need:
  • six PhD studentships funded by CSO – matched by a further six funded by the partner Universities
  • students now graduated. Eight are now in academic post-doctoral positions: five in Scotland, three internationally; one policy manager for a Scottish charity. More info here
  • two postdoctoral scientists working on MND at the Edinburgh Labs of the UK-Dementia Research Institute
• MND-SMART Trial designed to speed up the time it takes to find medicines that can slow, stop, or reverse the progression of, MND.
• As of 10 July 2025, MND SMART had recruited 979 participants across the UK – of which 353 are from Scotland.
• £1.9 million to support Precision MS, a major four-year research project led by NHS Lothian and Edinburgh University to develop a new approach to guide the treatment of MS and help people have better control of their condition.

Aim D: Ensure equitable and timely access to health and social care and support across Scotland

Commitment 14: Develop nationally agreed, regionally and locally applied guidelines for health services and referral pathways for neurological conditions.

The Centre for Sustainable Delivery has led the development and implementation of:

• Active Clinical Referral Triage (ACRT) to enable enhanced vetting of referrals by senior clinical staff ensuring optimal initial management. This has been supported by publication of ‘GP Factsheets’ on seven neurological conditions.
• Discharge Patient Initiated Reviews – Selected patients are discharged from secondary care with a reliable self-referral process for any problems related to that specific condition.
• National Headache Pathway
• Functional Neurological Disorder Pathway

Funded projects also commenced development, tested and implemented care pathways at a local level in the following areas:

• Migraine Trust’s Better migraine care through strengthening care available in community pharmacies.
• Angus HSCP implemented its Neurological Enhanced Community Support model to provide early intervention and reduce the need for emergency or unnecessary admission to hospital.
• NHS Greater Glasgow and Clyde for Idiopathic Intercranial Hypertension, neurorehabilitation, MS, Huntington’s.
• NHS Grampian tested a model to improve knowledge and diagnosis in GP practices on FND to improve referral pathways.

To improve the provision and standard of care to people living with ME/Chronic Fatigue Syndrome (ME/CFS) in Scotland we have:

• Commissioned an independent stakeholder review of the NICE NG:206 guideline on ME/CFS and how best to implement its recommendations in Scotland (2022).
• Published ME/CFS services in Scotland: health board survey analysis of data on NHS board arrangements for ME/CFS care, to better understand the provision of services and to identify where barriers exist to implementing best practice (2023 and updated 2024).
• Funded Action for ME and partners to develop and disseminate ‘Learn About M.E.’ for GPs and health professionals in Scotland, which aims to support person-centred care, informed by good practice and current research. The module is further supported by related webinars and podcasts.

Commitment 15: We will work with stakeholders to develop proposals for maps on Neurological Conditions to be included in the Scottish Atlas of Healthcare Variation.

The Atlas of Variation has not progressed since the Framework was published.

Aim E: Build a sustainable neurological workforce for the future

Commitment 16: Test how national workforce planning solutions can help address capacity challenges for the neurological workforce.

A national working group, the Service Improvement Forum (initially the Redesign Project Group), was established as a sub-group of the National Advisory Committee for Neurological Conditions. This focussed on workforce and care pathways. A national survey established priority areas in relation to workforce. The following pieces of work were undertaken to improve workforce planning:

• NES undertook a national census of Clinical Nurse Specialists. This was distributed as a ‘management report’ in 2024 and a further iteration of it is being undertaken to improve data completeness.
• Piloted an AHP Professional Judgement Tool for neurology in 2 NHS boards.
• Commenced a census of AHPs working in neurology.
• Heads of Neuropsychology have undertaken a staff survey that will provide a detailed breakdown of the neuropsychology establishment and specific roles within the service.

Commitment 17: Examine how workforce planning for team based approaches to neurological care can augment delivery, throughput and quality of services for people with neurology conditions.

We have:

• Commissioned NHS Education for Scotland to develop a Framework for Specialist Nursing in Neurology, published in March 2025. This outlines the knowledge and skills essential for delivering high-quality neurology nursing services for use by healthcare practitioners, managers, and educators. It describes career pathways and supports recruitment and succession planning.
• Worked with colleagues in the NHS to commence pieces of work to:
  • develop an education resource to develop a neuropsychology literate workforce aimed at improving support and referral pathways
  • develop a training and career pathway framework for neurology specialist pharmacists, supported by the establishment of a neurology Pharmacy Special Interest Group with workforce planning led by NHS Directors of Pharmacy
• Developed and maintained, through the Service Improvement Forum, close links with the following related Scottish Government strategies:
  • Rehabilitation and recovery: a person-centred approach – gov.scot
  • Allied Health Professions – education and workforce policy review
  • Healthcare science – education and training provision: baseline review – gov.scot
• Funded NHS Greater Glasgow and Clyde to undertake a scoping exercise, drawing on academic studies, to establish the case for an advance physiotherapy practitioner.
• Funded a number of projects to focus on capacity building of volunteers to help deliver the services they provide. This includes MS Society to deliver Wellbeing Training, Quarriers to deliver epilepsy awareness workshops, and PAMIS to deliver education on better postural care.