National Advisory Committee for Neurological Conditions minutes: February 2024

Attendees and apologies

 

• Stephanie Fraser (Chair) (SF), Cerebral Palsy Scotland
• Dr Jenny Preston (Deputy Char), NHS Ayrshire and Arran
• Susan Walker (Deputy Chair), NHS Greater Glasgow and Clyde
• Dr Michael Blackmore, GP, NHS Forth Valley
• Dr David Breen, Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Nicola Fleming-Stewart, Senior Nurse, Specialist Services, NHS Tayside
• Wendy Forrest, Clackmannanshire & Stirling Health & Social Care Partnership (10:00-11:00)
• Jennifer Hall (JH), Deputy Chair of the Neurological Alliance of Scotland (NAoS)
• Dr Alison Hunter, Rehabilitation Medicine Consultant, NHS Fife and NHS Lothian
• James Magro, Allied Health Profession (AHP) Advanced Practitioner, Department of Neurosurgery, 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)

Attendees - Scottish Government Officials

• Will Wood, Clinical Priorities Unit Head,
• Richard Brewster (RB), Clinical Priorities Policy, Framework Delivery
• Anissa Tonberg, Clinical Priorities Policy, Neurological Conditions
• Craig Kennedy, Clinical Priorities Policy, Neurological Conditions (Minutes)
• Euan Bailey, Clinical Priorities Policy, Neurological Conditions
• Susan Dillon, Regional Co-Ordinator, West
• Karen Ormiston, Regional Co-Ordinator, East

Attendees - Meeting Guests

• Katie Clayton (KC) Programme Manager, Preventative and Proactive Care Programme, National Services Scotland (10:20-11:00)
• Anne Wallace, Scottish Government, AHP Rehab Advisor (10:20-11:00)

Apologies

• Keith Willcock, Clinical Priorities Policy, Neurological Conditions Team Leader
• Dr Maggie Whyte, Consultant Clinical Neuropsychologist, NHS Grampian
• Morna Simpkins, Chair of NAoS

Items and actions

Welcome and Introductions

Four new members of the Committee were welcomed, who have joined since the previous NACNC in November 2023.

• Dr Michael Blackmore, a GP in NHS Forth Valley.
• Dr Alison Hunter, a Rehabilitation Medicine Consultant in NHS Lothian and NHS Fife.
• James Magro, an AHP Advanced Practitioner in the Department of Neurosurgery in NHS Tayside.
• Nicola Fleming-Stewart, a Senior Nurse in Specialist Services in NHS Tayside.

The committee also welcomed the new Regional Co-Ordinators for the West and East regions, Susan Dillon and Karen Ormiston, to the meeting.

Minutes and Matters Arising from Last Meeting

The Committee confirmed that the minutes reflected an accurate record of the previous meeting of 23 November 2023.

RB provided an update on the actions from the previous meeting.

Work is underway on finalising the business case for the Scottish Epilepsy Register (SER). This has been sent to Jonathan Cameron, Deputy Director, Digital Health & Care, Scottish Government and his suggestions have been incorporated and he has recommended the Business Case to be presented to the NHS Scotland Data Delivery Board to ensure buy-in from eHealth leads. Clinical leads have been identified in priority Boards that will adopt the system in 2024/25. It was agreed to merge Actions 2 and 3 from the November 2023 meeting.

Proactive and Preventative Care (PPC)

KC, Programme Manager for Preventative and Proactive Care Programme at National Services Scotland (NSS), provided an overview of PPC. NSS lead delivery of this programme.

Their aim is to provide more preventative and proactive approaches to health and wellbeing to improve healthy life expectancy, reduce health inequalities, and support sustainability in our health and care services for the future. This is a shared mission and responsibility, with people and communities at the heart of prevention and self-care in partnership with health and social care services.

There are three programmes within PPC:

• Prevention Care and Wellbeing portfolio, including ‘Waiting Well’
• Digital PPC,
• ‘Getting it Right for Everyone’ (GIRFE),

Digital PPC includes services such as Connect Me, Near Me and digital mental health services.

GIRFE is piloting multi-agency support and services from young adults to end of life care. Work is ongoing engaging with people with lived experience to ensure support prototypes match these aspirations.

‘Waiting Well’ ensures patients do not deteriorate from preventable causes while waiting for clinical appointments, with patients enabled to self-manage as much as possible where appropriate. Patients will have access to information that will help them understand and manage their condition whilst they are waiting to be seen.

Members of the committee noted that there are many barriers faced by those with neurological conditions regarding the accessibility of online resources, and available service resource.

The Committee highlighted the clinical guidance on undertaking appointments via near me had been produced by NACNC and that the PPC programme could make better use of this in strategic implementation of Near Me.

Actions arising:

• KC to update the Committee on the timescales on PPC.
• Explore how neurological services can link more closely with PPC work described: Waiting Well, Health and Wellbeing Plan, mental health support (for example neuropsychology), GIRFE (for example whether pathfinders have relevance to neurology as a long-term condition),
• KC to clarify position on general practice software systems integration within the national digital healthcare platform. 
• SM to link in CfSD work with PPC programme
• Scottish Government to link with Clinical Lead working on the Multi-agency support Toolkit for neurology
• KC to look to link in with Brain Health Scotland, where there is possibly overlap in the work

Self-Evaluation Overview

It was confirmed that KO (East) and SD (West) had been appointed as Network Coordinators and took up their posts in January 2024 to develop regional improvement networks for neurology. They are currently supporting health and social care organisations with completion of self-evaluation.

Both Network Coordinators have engaged with Health Boards in their respective regions. Boards are engaging with the process and appear on track to meet the 1 April deadline.

The committee discussed the challenges of not having been able to appoint a Co-ordinator for the North, due to lack of applications.  Both SD and KO have also contacted the North Region Health Boards in the meantime to offer support.

The Scottish Government will produce a thematic report based on the evaluations received, and the trends identified from across Scotland. The Minister will then consider recommendations in relation to the next steps.

It was suggested that NHS Orkney and NHS Shetland could coordinate a response alongside NHS Grampian joint neurological services.

Network Coordinators have been in liaising via NAoS with regards to self-evaluation being undertaken within the third sector.

Framework Progress Review

Paper 3 summarised achievements to date since the launch of the Framework.

Service Improvement Forum update - the Nurse Competency Mapping has now commenced and is expected to be ready in early summer 2024. Interest in this work was noted from both AHP and Pharmacy areas.

All Health Boards have submitted returns to the Clinician Nurse Specialist Census, with data expected to be finalised in March.

The Royal College of Physicians is mapping competencies of Physician Associates (PAs). The committee felt it would be helpful if this could be linked in with the census and competency mapping to better understand the delineation between them and nurse specialists.

Priority Setting for 2024/2025

KO and SD left the meeting for this item.

SF and JH declared a conflict of interest as members of NAoS and agreed to refrain from commenting on NAoS as a priority for the upcoming year.

The Neurological Conditions budget is yet to be confirmed for the upcoming year (2024-2025).

RB and SF introduced the Priority Setting Paper 5 which provided an overview of priorities, their benefits and costs, where known.

Prospective work streams were debated by the Committee and, ranked ‘high’, ‘medium’ or ‘low’:

High - essential and will mean substantial regression of Framework progress if not implemented

Medium - identified as having benefit; disappointing if we could not implement it

Low – ‘good’ to do rather than ‘must’ do.

Network Coordinators

High            

Round 4 Projects

High - Already committed to for the forthcoming year.

Nurse Competency Mapping and Development Modules on TURAS

High - Already committed to for the forthcoming year.

SER Phase 1

High     

SER Phase 2

Medium - On condition that assurances are made that this has local Health Board and eHealth capacity.

Neuropsychology Education Resource

Medium  

ME/CFS Pathway and Clinical Guidance

Medium - Ministerial interest, and subject to necessary support from stakeholders/partners.

Multiple Sclerosis (HSCT) Protocol

Medium - Ministerial interest, and subject to necessary support from stakeholders/partners.

NAoS Core Funding

High - Themes arising from Self-Evaluation - High            

Commitment 10: National Care Framework (NCF)

Low - Lack of evaluation in relation to impact of existing NCF being workable if applied to each neurological condition.

Commitment 5: Transitions

Medium - This could be incorporated into the work of the regional Network Coordinators.

Commitment 7: Anticipatory Care Planning

Medium

Targeted Funding Call

Medium - Needs to be targeted on specific areas.

Children’s Neurology Services

Outwith the current scope of the committee         

NACNC Terms of Reference

There was agreement to change wording to reflect Redesign Project Group (RPG) has changed to SIF, and to change Modernising Patient Pathway (MPP) to CfSD.

The Committee agreed to consider succession planning moving forward.

AOCB

The next NACNC meeting is scheduled to take place on Wednesday 23 May 2024, 14:00-16:00.