National Advisory Committee for Neurological Conditions minutes: February 2023

Attendees and apologies

• Stephanie Fraser (Chair) (SF), Cerebral Palsy Scotland
• Susan Walker (Deputy Chair) (SW), NHS Greater Glasgow and Clyde
• Dr David Breen, (DB), Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Richard Brewster (RB), Scottish Government (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)

In attendance

• Leslie Marr (LM), Senior Reviewer, Healthcare Improvement Scotland (HIS) (until 10:30)

Apologies

• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS)/Parkinson’s UK Scotland
• Diane Fraser (DF), Social Work Scotland
• Dr Maggie Whyte (MW), Consultant Clinical Neuropsychologist, NHS Grampian
• Gail Smith (GS), National Chief Officer Group
• Morna Simpkins (MS), NAoS/MS Society Scotland
• 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), Clinical Nurse Specialist, NHS Lothian
• Gerard Gahagan (GG), SG, Clinical Priorities Policy, Neurological Conditions

Items and actions

Welcome, introductions and apologies

SF welcomed the Committee and LM who was joining today from Healthcare Improvement Scotland.

The apologies were noted from the above.

Minutes and matters arising from last meeting

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

RB gave a staffing update on the Clinical Priorities team. The Unit Head post is being advertised with an expectation that the recruitment process would take a minimum of six weeks. Recruitment is also currently underway for Policy Manager post.

RB also highlighted that there has recently been a high level of policy and correspondence activity within the team.

Update on the HIS Self-Evaluation of General Standards for Neurological Care and Support

LM of Healthcare Improvement Scotland (HIS) provided an overview of the process to develop the Self-Evaluation of General Standards for Neurological Care and Support.

This included the establishment of the reference group to oversee the work and gain wider feedback from peers on the development of the tool.

Once the self-evaluation tool was drafted, a testing phase was undertaken. JP led a test process with colleagues from NHS Ayrshire and Arran. Feedback was used to refine guidance and structure.

JP highlighted that for similar exercises previously engagement with the wider community had been challenging. The support of the HIS Community Engagement Officer had been valuable. Although the timescale for completion of the pilot was short, a short survey was sent to the relevant community resulting in useful information and evidence.

Overall, this could be successfully applied to the neurological community. A report would be circulated on the findings from the pilot.

Concern was raised over potential time commitment. It was noted that this would be difficult to gauge as each standard is different, and also dependent on the required outcomes. It was suggested that it might be practical to focus on one standard at a time.

LM highlighted that support would potentially be available from HIS Community Engagement Officers, depending on their capacity.  They could, for example, be useful in linking up relevant groups to input to the self-evaluation process.

It was felt important to highlight in the guidance that completion of the self-evaluation would need be led by someone senior and in an position of influence.

The delivery of educational sessions on the self-evaluation was discussed. It was suggested that, in planning this, it might be useful to consider a session to gain interest and then further sessions to offer practical support.

The committee agreed that they look forward to seeing the guidance once signed off by the reference group and thanked LM for her work on this.

Framework priority setting 2023-2025

Following a priority setting workshop for NACNC members in mid-January, a draft delivery plan was sent out to the group for further comments. It was noted that there had been limited responses and the feedback received drew no firm conclusions.

An action plan would be developed on the next steps so the group were asked to discuss and agree an outline for this.

The group discussed a national lead role. There was little enthusiasm for this as its purpose and structure were not well defined.

Regional roles, in the first instance, would be needed to drive forward implementation of the self-evaluation at a local and regional level, as well as promoting and sharing best practice from the funded projects.

CD highlighted that a project coordinator role, similar to the position currently in place in NHS Grampian, would be useful.

SF highlighted the importance of establishing how the Integrated Joint Boards (IJBs) work as there is quite a lot of variation across regions.

Action 1: RB to produce an action plan for Framework priorities for circulation to the group for input and further comments.

CD and DB agreed to meet separately to discuss this further and feedback any thoughts to RB.

Action 2: DB and CD to meet and feedback further thoughts to RB

The Scottish Government budget would be confirmed in coming weeks so members were encouraged to offer any further feedback as soon as possible.

Framework progress update

RB referred to the progress update and RAG paper. There were no further comments on this.

The forthcoming Neurological Framework practice sharing online events, to be held in early March, were briefly discussed including updates on expected attendance and a request for any support from committee members.

Redesign Project Group

SW gave an update from the Redesign Project Group.

It was highlighted that a Workforce Delivery Group is being established and dates in mid to late March had been circulated for the next meeting.

Seminar to improve collection of neurology prevalence data

'Neurological Conditions: estimating the prevalence in Scotland of selected conditions using GP and hospital admissions datasets' was published in December 2022. It was acknowledged that this is the first step and work needs to be done to establish and overcome the gaps in data. It was noted that there was concern around the variation from data gathered by third sector organisations. There is a lot of interest around the next steps.

DB had received messages to say that the published data was wrong. Some organisations had perhaps overlooked the fact that the report was a first step in the process of developing better prevalence data.

CD recognised that national health intelligence is important but questions whether this is currently achievable. NHS Ayrshire and Arran do not use SPIRE. NHS Highland did not participate. There are concerns about the accuracy of diagnostic coding.

A seminar for representatives from all sectors will aim to try and find solutions to improvements required to prevalence data collection. Questions were raised about how action points from such a seminar would be taken forward. It was suggested that it would be good to initially identify gaps in data and the potential scope of any proposed actions.

It was suggested that it would be good to involve input from eHealth colleagues in the seminar and any work going forward. The recent publication of the Digital Strategy was timely for this.

RB agreed he would discuss feedback with Debbie Sagar, Senior Research Officer at the Scottish Government, and would report back to the group on further suggestions.

Action 3: RB to discuss feedback from the group on a data seminar with Debbie Sagar and report back to the group.

Overview of linked Scottish Government policy areas

SF expressed thanks to GG for putting together the update paper on related Scottish Government policy and activities.

It was noted that it would be useful to add the digital strategy to this. 

The 'Delivery of psychological therapies and interventions: national specification' strategy was noted as useful for the Redesign Project Group (RPG) to link in to.

Any other competent business

DB raised potential issues with the updated Medicines and Healthcare products Regulatory Agency (MHRA) guidance on the use of sodium valproate. Prof. David Hunt is currently leading a group to look at this within neurology.

AT is meeting with Prof. Hunt on a separate issue and would raise this with him and report back to NACNC.

Action 4: AT to discuss MHRA guidance with Prof. David Hunt and report back.

Review of action points

• produce an action plan for Framework priorities for circulation to the group for input and further comments. (Richard Brewster) - complete
• to meet to discuss Framework priorities outlined in paper and feedback further thoughts to RB. (Callum Duncan/David Breen) - verbal update
• to discuss feedback from the group with Debbie Sagar on a data seminar and report back to the group. (Richard Brewster) - Written update provided in Paper 2 – verbal update will provide context
• to discuss MHRA guidance on sodium valproate with Prof. David Hunt and report back to the group. (Anissa Tonberg) - verbal update