National Advisory Committee for Neurological Conditions minutes: August 2023

Attendees and apologies

• Stephanie Fraser (Chair) (SF), Cerebral Palsy Scotland
• Susan Walker (Deputy Chair) (SW), NHS Greater Glasgow and Clyde
• Dr Jenny Preston (Deputy Chair) (JP), NHS Ayrshire and Arran
• Dr David Breen, (DB), Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Wendy Forrest (WF), Clackmannanshire and Stirling Health and Social Care Partnership
• Stephanie McNairney (SM), National Centre for Sustainable Delivery, NHS Golden Jubilee
• Judith Newton (JN), National MND Nurse Consultant - University of Edinburgh (covering all boards)
• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS)/Parkinson’s UK Scotland
• Morna Simpkins (MS), NAoS/MS Society Scotland

Via MS Teams

• Gail Smith (GS), National Chief Officer Group,
• Louise Kay (LK), SG: Divisional Head, Healthcare Planning and Quality (from 1100-1130)

Scottish Government (SG) officials attending in person

• Keith Willcock (KW), Scottish Government (SG), Clinical Priorities, Team Leader, Neurological Conditions
• Richard Brewster (RB), SG, Clinical Priorities Policy, Framework Delivery
• Anissa Tonberg (AT), SG, Clinical Priorities Policy, Neurological Conditions
• Euan Bailey (EB), SG, Clinical Priorities Policy, Neurological Conditions (Minutes)
• Debbie Sagar (DS), SG, Senior Research Officer, Health and Social Care Analysis (from 1230-1300)
• Jane Borland (JB), SG, Principal Research Officer, Health and Social Care Analysis (from 1230-1300)
• Ryan Anderson (RA) SG, Policy Team Leader - Data Intelligence, Strategy and Policy Unit (from 1230-1300)

Apologies

• Dr Maggie Whyte, Consultant Clinical Neuropsychologist, NHS Grampian
• Will Wood, SG, Unit Head, Clinical Priorities
• Craig Kennedy, SG, Clinical Priorities, Neurological Conditions

Items and actions

Reflection and remembrance

Gerard Gahagan, who led the Neurological Conditions team in Scottish Government, sadly passed away in July 2023. The committee took time to reflect and to remember his achievements, particularly his passion and commitment in improving care for people with neurological conditions in Scotland.

Coming from a nursing background, Gerard spent many years at Quarriers, latterly as Head of Epilepsy Services, where he worked to establish the world-renowned William Quarrier Scottish Epilepsy Centre in Glasgow. He was instrumental in developing the Scottish Government’s Neurological Framework, working to form the strategy while National Implementation Lead for neurology, and latterly steering his team within Clinical Priorities in delivering its commitments.

The Committee wanted to record Gerard’s contribution to neurology, as well his knowledge, commitment, positivity and temperament, particularly in supporting others, which would be fondly remembered and greatly missed.

LK updated that KW, who had been temporarily supporting the team in Gerard’s absence, will be taking on the role as Neurological Conditions Team Leader on a permanent basis.

Welcome, introductions and apologies

The apologies were noted from the above.

The meeting was being held in-person for the first time in three years. There is a commitment to hold at least one in-person meeting per year going forward.

Minutes and matters arising from last meeting

The committee confirmed that the minutes reflected an accurate record of the previous meeting in May.

CD updated on proposals to phase out video conferencing facilities for patient consultations. The Technology Enabled Care team has provided assurances that a workable solution can be found to enable the far end control needed for clinical examinations. The phase out has been delayed for six months (from 31.12.23) to enable work to progress on this. The committee noted that the published guidance on the use of virtual consultations will need to be revised to align with this solution.

Framework progress update

RB updated the Committee on the Regional Network Coordinator posts. These will not be recruited as secondment roles due to current Scottish Government policy in regard to headcount and HMRC rules on VAT liability. Service Level Agreements (SLA) will be put in place with NHS Boards as the only viable option.

Publicity in communicating the Network Coordinator roles has been prepared and ready to be sent. The committee were asked to circulate this through their networks once received. 

CD advised that the NHS Grampian Improvement Directorate, which has a strong focus on innovation, may be worth linking with.

Action 1: Clinical Priorities team to send out Network Coordinator publicity to the committee to share this through appropriate networks.

Written update

The committee were asked to feedback and comment on paper 2, 'Framework Progress Summary 2023-24 Quarter One'.

The current system in place for Multiple Sclerosis (MS) Haematopoietic Stem Cell Transplantation (HSCT) treatment, although felt to be robust, needs to be formalised to demonstrate a clear pathway for treatment. The committee also felt this would help to support equity of access for evidence based treatments. The Clinical Priorities team are currently in contact with clinicians around the process and will highlight updates or issues to the Committee.

It was also highlighted that Health and Social Care Partnerships would also need to be updated on any changes to treatments pathways or medicines as this would impact planning and budgets in relation to, for example, carers and housing adaptations.

There was a question about the nurse specialist census and whether this includes nurses employed by the third sector and age demographic.

Action 2: Clinical Priorities team to check with NES what nursing data is included in the nurse specialist census.

2023-2024 Delivery Plan

The committee was asked to feedback any comments from paper 3, 'Delivery Plan 2023-24 – Quarter One Progress Report'.

It was felt that the timescales on delivery seemed unrealistic, particularly in relation to the development of the networks. The Clinical Priorities team would review the current timelines and update the committee on developments.

Action 3: Clinical Priorities team to review and update current timelines within the Delivery Plan.

Redesign Project Group reset

SW updated that, due to the close connection between the work of the Redesign Project Group and Workforce Group, the two have recently merged and the first joint meeting was held in July. It was felt the purpose of this group needed to be refined. The committee was asked to review and comment on paper 4, 'Redesign Project Group (RPG) reset', a draft Terms of Reference for the merged group.

It was agreed that the Terms of Reference should be revised reflect a more flexible structure based around delivering bespoke pieces of work, an emphasis on workforce issues, and linking with complementary strategies. It was suggested that Service Improvement Forum might be a more appropriate title.

The Terms of Reference will be revised, reviewed by the Redesign Project Group, then circulated to NACNC members for approval.

Action 4: Clinical Priorities team to revise the Redesign Project Group/Service Improvement Forum’s Terms of Reference and circulate to the Committee for approval.

Progress update on funded projects

The committee were asked to note paper 5, 'Progress Update on Funded Projects', which outlined current projects being funded through the Framework, which have completed final reports and how publicly accessible these are.

The process for assessing Round 4 applications for funding is currently underway.

Self-evaluation of Neurology Standards

The committee were asked to note paper 6, 'Self-evaluation of Neurology Standards – Contacts within NHS Scotland Health Boards', which outlines named contacts received in response to letters sent to NHS Board Chief Executives

To date, responses have been received from 50% of boards. A follow-up will be sent to boards yet to reply. The Committee were asked to forward any names to help ensure this would be actioned locally. 

Data (Commitment 12) – progress on linked initiatives

DS, JB and RA joined the meeting to update on data in relation to linked initiatives.

DS provided a progress update on gathering prevalence data:

• the report of estimated prevalence of neurological conditions in Scotland, published in December 2022 was the first report on this topic to include data extracted from General Practice systems via the SPIRE (Scottish Primary Care Information Resource) tool, as well as estimates derived from hospital admissions data
• the disease prevalence dashboard published by Public Health Scotland (PHS) will, for the first time, include data for the prevalence of epilepsy, the most common serious neurological condition

Future development of this data is planned as part of wider developments of General Practice data, including:

• a significant programme of development is currently underway to improve our technical ability to extract data from General Practice
• a programme of work to improve the consistency of recording in General Practice, led by PHS and National Services Scotland (NSS)
• roll out of SNOMED, a new clinical coding system for co-ordinated and consistent recording of clinical conditions, as highlighted in the Scottish Government’s 2021 refreshed Digital Health and Care Strategy

RA outlined the Scottish Government Data Strategy high level aims:

• empowering professionals
• fit for purpose and accessible
• enable data that can be used for research and healthcare improvement

Some key initiatives that are being set up: National Clinical Data store, Research Data Scotland, single supplier for GPIT. SNOMED is a 10 year programme and currently work is taking place to get the ontology correct.

Questions and discussion included how social care data will be integrated to national digital platform, support for GPs to input data accurately and a national clinical data store. These were all concluded to be long-term developments. Different neurological conditions will have different needs and are at different stages of progression. There discussion on terminology used for gathering health and social care data which confirmed that social care data is not included.

It was agreed to draft a letter summarising key priorities for neurology with the social research team continuing to link in on moving this commitment forward.

Action 5: Clinical Priorities team to draft a letter to Digital colleagues, summarising key priorities for neurology.

Progress on related strategies

The Committee were asked to note paper 7, 'Scottish Government - Related Strategies'.

For future updates, it was suggested that it would be useful to highlight strategies the committee could directly input in to.

Action 6: Clinical Priorities team to include and highlight strategies which directly require the Committee’s input in future 'Related Strategies' papers.

It was noted that the Dementia Strategy has similarities to the Neurological Framework. It would be useful to know how the neurological community can input in to this and it was agreed that contact would be made with the Dementia team to ascertain if there is an Action Plan to support this.

Action 7: Clinical Priorities team to contact Dementia team to discuss how the Committee can input in to the Dementia Strategy Action Plan.

Any other competent business

SM updated that the revised Headache pathway is expected to be launched in September, to coincide with the Migraine Awareness Week. Once launched the Clinical Priorities team would publicise this though relevant networks.

Action 8: Clinical Priorities to publicise the Headache pathway once finalised 

TM would be standing down in chairing the Neurological Alliance of Scotland (NAoS) in November, therefore also her role on NACNC. The Committee expressed its thanks to TM for her work and input through the Committee over the years.

It was noted that MS would be taking up the role as NAoS Chair, with the Deputy Chair still to be confirmed. 

GS intimated that she will be retiring in November and possibly this may be her last NACNC meeting.

There was discussion around recruiting to current NACNC vacancies, particularly the challenges around recruiting a social work representative.

WF suggested going through Social Work Scotland Self-Directed Support team to seek nominees.

The Clinical Priorities team would work to fill current membership vacancies on NACNC.

Action 9: Clinical Priorities team to progress recruitment of Committee vacancies.

It was noted that the next meeting, scheduled for 22 November, would need to be changed due to a conflicting meeting. EB would look for a alternative date and update the committee.

Review of action points

• to send out Network Coordinator publicity to the Committee to share this through appropriate networks. (Richard Brewster/Euan Bailey) - complete
• to check with NES what nursing data is included in the nurse specialist census. (Richard Brewster) - complete
• to review and update current timelines within the Delivery Plan. (Richard Brewster) - complete
• to revise the Redesign Project Group/Service Improvement Forum’s Terms of Reference and circulate to the Committee for approval. (Richard Brewster/Euan Bailey) - complete
• to draft a letter to Digital colleagues, summarising key priorities for neurology. (Clinical Priorities team) - complete
• to include and highlight strategies which directly require the Committee’s input in future Related Strategies papers. (Clinical Priorities team) - ongoing
• to contact Dementia team to discuss how the Committee can input in to the Dementia Strategy Action Plan. (Keith Willcock) - ongoing
• to publicise the Headache pathway once finalised. (Clinical Priorities team) - complete
• to progress recruitment of Committee vacancies. (Clinical Priorities team) - in progress

Date of next meeting: 23 November 2023, 0900-1100.