National Advisory Committee for Neurological Conditions minutes: August 2024

Attendees and apologies

• Stephanie Fraser (Chair) (SF), Cerebral Palsy Scotland
• Dr Jenny Preston (Deputy Chair) (JP), NHS Ayrshire and Arran
• Susan Walker (Deputy Chair) (SW), NHS Greater Glasgow and Clyde
• Dr Michael Blackmore (MB), GP, NHS Forth Valley
• Dr David Breen, Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Nicola Fleming-Stewart (NFS), Senior Nurse, Specialist Services, NHS Tayside
• Jennifer Hall, Deputy Chair of Neurological Alliance of Scotland (NAoS)
• Dr Alison Hunter, Rehabilitation Medicine Consultant, NHS Lothian
• James Magro (JM), Allied Health Profession (AHP) Advanced Practitioner, Department of Neurosurgery, NHS Tayside
• Dr Maggie Whyte (MW), Consultant Clinical Neuropsychologist, NHS Grampian

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 (CK), LTC Policy, Neurological Conditions (Minutes)
• Euan Bailey, LTC Policy, Neurological Conditions
• Susan Dillon (SD), Regional Co-Ordinator, West
• Karen Ormiston (KO), Regional Co-Ordinator, East

Apologies

• Wendy Forrest, Clackmannanshire and Stirling Health and Social Care Partnership
• Stephanie McNairney (SM), National Centre for Sustainable Delivery, NHS Golden Jubilee
• Judith Newton, National MND Nurse Consultant - University of Edinburgh (covering all boards)
• Morna Simpkins, Chair of NAoS
• Will Wood, Scottish Government, Long Terms Conditions Policy Unit Head

Items and actions

Welcome, Introductions and Apologies 

Morna Simpkins, Chair of the Neurological Alliance since September 2023, and also Scottish Director for the MS Society, is standing down from both roles shortly. Members shared their gratitude for her work on the committee, and her contribution to the neurological conditions community more widely, and wished her well for the future.

Apologies, as indicated above, were noted.

Minutes and Matters Arising from Last Meeting

The committee agreed to the Minute from the 29 May 2024 meeting.

Scottish Government Spending Controls and post-2025 Framework

KW provided an update about the Scottish Government’s current financial position. Emergency spending controls have been introduced across the organisation together with an in-year review of all budget lines. The committee was advised that this would impact some neurological framework priorities for this financial year, and could see some work delayed or stopped entirely.

Action 1: It was agreed that Scottish Government officials would provide NACNC members with an update on what this means for the committee’s work as soon as possible.

Self-Evaluation of Neurology Standards – Thematic Report

The committee was asked to note that an item around regional networking events had been mistakenly removed from the agenda and the chair agreed to include this under Item 4.

SD, KO and RB provided an overview of the Thematic Report. Case studies from the self-evaluations still need to be included in the report, and individuals from the NACNC have volunteered to be involved in this. All NHS boards that submitted returns have agreed or proposed improvement plans as a result of the self-evaluation.

The following points were made in relation to the report:

• People who completed the self-evaluation should get the report, once finalised, before it is distributed more widely. Scottish Government agreed to do this.
• Completion of the self-evaluation was a huge piece of work and this should be acknowledged.
• It was requested that an overview be included of which NHS boards completed the self-evaluation for which conditions.

‘Scene setting' sessions had been held in July to provide feedback to NHS Boards on the themes arising from self-evaluation and to seek views on the format and content of networking events. Due to current financial constraints, the committee was advised that the scheduled National Network launch event would no longer be taking place in person. A verbal outline of proposals for a series of online event was given. The following points were made in relation to what was described:

• 2nd October is too soon (Clinical attendees require more than six weeks’ notice) and clashes with Cerebral Palsy conference
• Suggested that GPs be included in invite list
• Vary the days these are held – for example not Wednesday every time
• Listen to what network members want rather than dictating content though there was also support for inclusion of Right Decisions as a mechanism for supporting care pathways and referrals
• Clarity required on the purpose of the networks and how this links to the self-evaluation process
• JH highlighted the importance of involving those with lived experience.

It was agreed to circulate the programme, the rationale for it, and intended audience to the committee.

The committee agreed the importance of targeting the most appropriate contacts to include, and ensuring there was a good balance between presentations provided by speakers on key topics and providing opportunities for attendee interaction and wider discussion.

Action 2: RB, SD and KO advised they would provide the committee with an update on the proposed planned programme for comment.

Neurological Framework Progress Update

The following were highlighted in the progress update:

• Pages for migraine, spina bifida and hydrocephalus have been completed and published on the NHS Inform website.
• Health and Social Care Analysts have updated on Prevalence Data collection. This has not progressed due to delays in the upgrade to the GPIT system. MB suggested ‘LIST Analysts’ employed in each NHS board may be able to assist. He would contact a colleague in NHS Forth Valley to understand if they, and their counterparts across Scotland, could assist in securing this data.
• Four projects funded through Rounds 1-3 of the Neurological Framework have been contacted to request final reports by 4th November.

Service Improvement Forum

The Service Improvement Forum is scheduled to receive the report on mapping of nurse specialist competencies at its meeting in September. Final sign-off will be by the Transforming Nursing Roles oversight group.

There are ongoing conversations with NES about an AHP workforce census, building on the approach undertaken for the Clinical Nurse Specialist (CNS) census.

There is no longer budget to develop the neuropsychology education resource and RB/MW will discuss possible alternative approaches.

NES have completed the census on Clinical Nurse Specialists. This has been released only as a management report due to a number of challenges in the accuracy of the returns. Adjustments to the approach are being made for a further iteration of the census and this will commence this Autumn.

Delivery Plan / Framework (post-2025)

In line with Item 3 on the agenda, Scottish Government officials reiterated that all work streams deemed high priority for the 2024/2025 financial year will continue this year, with funding for the Round 4 projects having been fully issued.

KW agreed to provide the NACNC with an update as and when the 2024/25 budget changes are confirmed.

Round 4 Funded Projects Progress Update

The paper summarising progress was noted. It was highlighted that the Minister attended NHS Grampian to learn more about the pharmacy support project for migraine led by Migraine Trust. The Minister was very positive about this work, and was keen that the successes of this could be replicated in other Boards and in other aspects of the NHS.

The committee was pleased to hear of her visit to the charity, and indicated their interest in inviting the Minister to the next NACNC meeting on 27 November 2024 to discuss neurological conditions more widely.

Action 3: Scottish Government officials to contact the Minister for Public Health and Women's Health to invite her to the next meeting.

AOCB

No other business was raised.