National Advisory Committee for Neurological Conditions meeting minutes: February 2025

Attendees and apologies

 

• Stephanie Fraser (Chair), Cerebral Palsy Scotland
• Dr Jenny Preston (Deputy Chair), NHS Ayrshire and Arran
• Susan Walker (Deputy Chair) (SW), NHS Greater Glasgow and Clyde
• Dr Michael Blackmore, GP, NHS Forth Valley
• Dr David Breen, Consultant Neurologist, NHS Lothian
• Dr Callum Duncan, Consultant Neurologist, NHS Grampian
• Jennifer Hall, Chair of Neurological Alliance of Scotland (NAoS)
• Dr Alison Hunter (AH), Rehabilitation Medicine Consultant, NHS Lothian
• James Magro (JM), Allied Health Professions Consultant in Rehabilitation, NHS Tayside
• Keith Park, Deputy Chair of NAoS

Attendees - Scottish Government Officials

• Keith Willcock (KW), Long Terms Conditions (LTC) Policy, Neurological Conditions Team Leader
• Richard Brewster (RB), LTC Policy, Framework Delivery
• Anissa Tonberg, LTC Policy, Neurological Conditions
• Craig Kennedy, LTC Policy, Neurological Conditions (Minutes)
• Euan Bailey, LTC Policy, Neurological Conditions (Minutes)
• Louise Scott (LS), LTC Strategy Unit, Scottish Government

Apologies

• Nicola Fleming-Stewart, Senior Nurse, Specialist Services, NHS Tayside
• Wendy Forrest, Clackmannanshire and Stirling Health and Social Care Partnership
• Stephanie McNairney, National Centre for Sustainable Delivery, NHS Golden Jubilee
• Judith Newton, National MND Nurse Consultant - University of Edinburgh (covering all boards)
• Dr Maggie Whyte, Consultant Clinical Neuropsychologist, NHS Grampian
• Will Wood, Scottish Government, LTC Policy Unit Head

Items and actions

Welcome, Introductions and Apologies 

SF welcomed Louise Scott (LS), Long Term Conditions Strategy Unit, Scottish Government, who joined to deliver a presentation under Item 4.

Minutes and Matters Arising from Last Meeting

The Minutes from 27 November 2024 were approved.

Action log updates:

A Framework summary presentation was on the agenda for the meeting, and a Framework final report will be published in due course.

Regarding the letter from the Minister to JMagro on the AHP Census work, a meeting with officials around the census, which will include JMagro, is scheduled and there will be a further update following that.

Funded Projects Overview

RB presented a summary of the Framework, which included:

• Analysis of the funding breakdown by year and by condition;
• Analysis of the funded projects’ impact against the Framework’s commitments;
• Number of service users and professionals involved in/impacted by the projects;
• The impact on the wider system if work was scaled up or adopted;
• Information resources available on services to improve coordination of care;
• Whether projects state they will continue reaching a wider audience;
• Identification of projects that have demonstrated work that is fully scalable and self-sustaining.

There was discussion around sustainability of projects. A statement was made that it was disappointing that 74% of projects had demonstrated that funding support is crucial for work to continue (1).

CD explained how having adequate support was key to helping projects be successful, citing his involvement in two projects in the Grampian region, one which did have programme support and the other which relied on clinician time. He acknowledged the difficulties in sustaining projects without dedicated programme support.

ACTION: RB to analyse commonality of funded projects that have been classified as fully scalable and self-sustaining.

Promotion of the projects and their outcomes was discussed. It was recognised that sharing through colleagues working within neurology would be straight forward, however, sharing work outside of neurology, for example, primary care and pharmacy, would be harder to reach but equally as important.

RB would look at projects which would be easier to disseminate (‘quick wins’) and SW agreed to meet to help with this.

ACTION: RB/SW to meet to discuss identification of projects to disseminate

Whilst projects which received higher grants to deliver outcomes have had a positive impact, it was noted as important to be mindful of the impact of smaller funded projects.

RB agreed to share the presentation slides with committee members.

ACTION: RB to share Framework analysis slides to the Committee.

Long Term Conditions Strategy

LS presented on the Long Term Conditions Strategy, including:

• Background on long term conditions and the prevalence in Scotland;
• Summary of commitment themes currently in place for conditions falling under the Strategy;
• Policy development of the Strategy, including the timelines for consultation and publication.

There was uncertainty of which neurology clinical leads were consulted in the Strategy’s initial consultation and LS agreed to check this and update.

ACTION: LS to check which neurology leads were involved in the initial consultation.

The available funding to support the strategy has not yet been discussed but will be part of the process.

It was noted that access to social care was crucial and that social care policy colleagues will be involved as part of the Consultation and engagement around the Strategy.

The meeting acknowledged the overall strategic direction and reasoning if the strategy is on a ‘macro-level’ but there would need to be more detail of how this would impact/improve day to day services on a ‘micro-level’. Members stressed that this is even more important within neurology, where conditions are varied and often more complex than other long term conditions within the Strategy.

LS outlined the development of a prioritisation matrix which will incorporate all conditions, including individual neurological conditions. This matrix will be based on a template used by the NHS National Services Division (NSD), but fully tailored to the Strategy. 

It was confirmed that current active work supporting neurological conditions would form part of the prioritisation matrix.

ACTION: LS to share Long Term Condition Strategy presentation slides

SF thanked LS for her presentation. LS would continue to keep the Committee updated and would be happy to join a future meeting to present on progress.

NACNC Update

Framework Progress Update

The Nurse Competency Framework has now been published on Turas. RB will work with NES to develop approaches to promoting this.

The Neurological Alliance of Scotland’s (NAoS) National Patient Experience Survey has completed its fieldwork data and they hope to speak with NHS boards about this in the coming weeks.

The new GP IT system is now in place for all GP practices in Scotland meaning that, in theory, full coverage for neurological prevalence data ought to be possible. Research colleagues have advised that regularly collected data published in June (which includes epilepsy) will give an indicator of levels of GP participation in returning data. If there is a 90%+ return this will provide an indicator of likely response rate for re-running the prevalence search undertaken at the end of 2022.

MB asked if GP practices were likely to prioritise data collection given the level of pressure they are under. RB considered the data collection is largely automated but agreed to look more into the methodology and report back on how this works.

ACTION: RB to find out more about the methodology of data collection from GPs and report back.

The Association of British Neurologists (ABN) asked Scottish Government to comment on a draft workforce document which includes recommendations in relation to staffing levels for neurology services across professions.

ACTION: RB to contact ABN to ask if time for further comment on draft workforce paper by NACNC members.

Service Improvement Forum

SW outlined the options presented in relation to continuing the Service Improvement Forum (SIF). It was noted that SIF has been a good way of focussing on specific pieces of work however, more recent meetings have included updates rather than action. The capacity of colleagues, who may sit of both NACNC and SIF, is also a factor in the Forum’s ongoing sustainability.

The Committee agreed to discontinue SIF with Neuro Conditions team linking with leads for individual pieces of work and reporting to NACNC.

ACTION: RB to communicate the decision regarding SIF to its members and to set up liaison meetings with relevant leads.

NACNC beyond March 2025

KW updated the meeting that SF, SW, CD and MB have noted their intention to stand down from the Committee. MB confirmed that he would be happy to stay on the Committee until another primary care representative was recruited.

JP has agreed to cover the Chair’s role whilst awaiting the appointment of the Specialty Advisor to the Chief Medical Officer (SACMO) for Neurology. This would allow a level of continuity for the Committee’s Executive in the meantime.

As the Long Term Conditions Strategy is only at the planning stage with no advisory structure yet proposed, it was agreed that it would be useful to maintain the Committee for the foreseeable future.

It is key that the Committee focuses on priorities for neurological conditions in order to feed this into the development of the Long Term Conditions Strategy throughout 2025.

KW confirmed that details of the 2025/26 budget for neurological conditions is still to be confirmed. Some priorities have been detailed for 2025/26 and the Committee would be advised on these once the budget is confirmed.

Collaborative Improvement Network Update

The Improvement Network met for a launch session in October and again in December, to look at commissioning of local support and collaborative working that would facilitate better use of resources.

A further drop-in session, for statutory sector colleagues only within the Network, was held in February to hear updates on NHS boards’ improvement plans.

A further session, planned for March, would focus on collaborative governance.

The meeting agreed the Network is currently at a crucial stage and will need further support to become self-sustaining. Leadership and governance is key to this, alongside consistency of engagement.

It was agreed that Network membership is crucial and focus should be given to  getting decision makers within NHS boards to attend. RB agreed to add this to upcoming discussions and compile a targeted list to invite to join the Network.

ACTION: RB to compile a targeted list of people to invite to join the Network

In terms of accountability for the Network, reporting on progress would be made to the Minister for Public Health and Women’s Health. It was agreed to add regular reporting to NACNC to the Operating Agreement.

ACTION: RB to add reporting of network activity to the Operating Agreement.

AOCB

No other business was raised.

Recognition of Departing Committee Members

KW gave a note of thanks to departing members of the Committee, SF, SW and CD, for their commitment to NACNC over many years, as well as their invaluable input to the delivery of the Neurological Framework and towards the improvement of neurological services across Scotland.

SF, outgoing Chair, thanked the Committee members for their support and for bringing their specialist knowledge to every discussion. She also gave special thanks to the Committee’s Deputy Chairs, SW and JP, and acknowledged their long working relationship over the years. An acknowledgement was also made to the work of the late Gerard Gahagan, and his expertise and input to the formation and development of the Framework.

CD also acknowledged Gerard Gahagan’s work and gave a special thanks to SF, SW and JP for their dedication and support over the years. 

The next scheduled meeting of the NACNC is 28 May 2025.