National Advisory Committee for Neurological Conditions minutes: November 2024

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
• Nicola Fleming-Stewart (NFS), Senior Nurse, Specialist Services, NHS Tayside
• Wendy Forrest, Clackmannanshire and Stirling Health and Social Care Partnership
• 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
• Stephanie McNairney (SM), National Centre for Sustainable Delivery, NHS Golden Jubilee
• Judith Newton, National MND Nurse Consultant - University of Edinburgh (covering all boards)
• Keith Park, Deputy Chair of NAoS
• Dr Maggie Whyte, Consultant Clinical Neuropsychologist, NHS Grampian

Attendees - Scottish Government Officials

• Jenni Minto MSP, Minister for Public Health and Women’s Health (10:00-10:45)
• Keith Willcock (KW), Long Terms Conditions (LTC) Policy, Neurological Conditions Team Leader
• Richard Brewster (RB), LTC Policy, Framework Delivery
• Susan Dillon, Regional Co-Ordinator, West
• Karen Ormiston, Regional Co-Ordinator, East
• Anissa Tonberg, LTC Policy, Neurological Conditions
• Craig Kennedy, LTC Policy, Neurological Conditions (Minutes)
• Euan Bailey, LTC Policy, Neurological Conditions

Apologies

• Will Wood, Scottish Government, LTC Policy Unit Head

Items and actions

Items and actions

Prior to the meeting opening, the Minister for Public Health and Women's Health, Jenni Minto MSP, informally met the members to speak about the Scottish Government’s priorities for neurological condition care and support in Scotland, and to listen to the views of members.

Welcome, Introductions and Apologies 

Keith Park, the newly elected Deputy Chair of the Neurological Alliance of Scotland, was welcomed to the Committee.

Apologies were recorded from Will Wood, Scottish Government.

Minutes and Matters Arising from Last Meeting

The Minute from August 2024 was approved.

The Committee asked SG Officials to keep them informed of any relevant updates resulting from the Scottish Government Budget on 4 December.

Neurological Conditions Network

Report of Network Launch

Consistent themes for networks to prioritise are highlighted in the report of the Network Launch event.

NACNC raised the following points:

• Staff capacity to deliver improvement projects, and in particular the importance of the support given by non-clinical staff to clinicians to progress some of the recent projects funded through the Neurological Framework.
• Articulating the differences between the Neurology Networks’ and the Neurology Specialty Delivery Group (Centre for Sustainable Delivery)

The desire to see that the work initiated through the Framework is appropriately concluded, and to ensure this is done in partnership with other relevant areas of Government and the importance of the Networks in moving this forward.

Concern about the risk of neurological conditions policy focus being subsumed within the planned Long Term Conditions Strategy and not receiving sufficient attention commensurate with the impacted population. Committee members agreed to consider sharing their views on the planned Long Term Conditions strategy via the upcoming consultation, particularly regarding the governance of the Strategy.

KW advised that Scottish Government is currently undertaking work to review the scope of the various health networks in Scotland, part of the aim of which is to identify where there might be areas of common activity or duplication.

It was agreed to begin compiling data and analysis from projects funded by the Neurological Framework to emphasise the sustainable benefits from these and the potential wider impact on neurological care in Scotland.

Action 1: RB to consider the best approach to drafting a summary paper on the positive impacts of Framework projects.

Action 2: RB to discuss with SM messaging around the respective role of the Speciality Delivery Group and Neurological Conditions Network

Draft network Operating Agreement

The Chair sought comments from the Committee on the draft Network Operating Agreement.

A question was raised over who the Neurological Conditions Network would be ultimately accountable to. RB indicated that, in line with the Neurological Framework, the Networks would be accountable to the Minister and Cabinet Secretary, and agreed to edit to draft Agreement to reflect this.

The scope of involvement of people with lived experience also needs to be clarified as potentially open to misinterpretation and incorrect representation.

Action 3: RB to amend the agreement to reflect the points made in this discussion.

​​​​​​​NHS board progress overview

There was discussion on potential ways of further progressing the Networks without designated Coordinators. Some concern was expressed that health and social care staff may not have capacity to lead on or participate in improvement and reporting activity. There was also some concern and around the inconsistency of what Board self-evaluations looked at and in the methodologies used to assess services. It was also suggested that further patient surveys may help to  identify questions, and gaps in services, that the boards could focus upon regarding service improvement.

Neurological Framework Progress Update

RB  provided some updates on Neurological Framework activity, including:

• The Neurological Network Launch event on 30 October
• The approval of NHS Education Scotland’s Nurse Competency Framework  by the Transforming Nursing Roles Governance Group.
• A national report on ME/CFS services around NHS Scotland published on 20 November
• Patient experience survey work which is being undertaken by the Neurological Alliance of Scotland, from which they expect to publish data in the Spring.

Implementation of the Scottish Epilepsy Register in NHS Lanarkshire and NHS Ayrshire and Arran is almost complete. Engagement with eHealth to plan for implementation in the next tranche of boards is proposed.

The Committee were also advised that projects funded through the Neurological Framework vary in terms of their sustainability and scalability. It is anticipated that a number may require additional support in order to continue progressing.

Service Improvement Forum

The Committee were referred to Papers 5 and 6 for updates regarding the Service Improvement Forum.

AOCB

No other business was raised.

The next scheduled meeting of the NACNC is 27 February 2025.