National Advisory Committee for Neurological Conditions minutes: November 2022

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
• Gail Smith (GS), National Chief Officer Group
• Morna Simpkins (MS), Neurological Alliance of Scotland (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
• Richard Brewster (RB), Scottish Government (SG), Clinical Priorities Policy, Framework Delivery
• Claire Mellor (CM), SG, Clinical Priorities Policy, Neurological Conditions
• Gerard Gahagan (GG), SG, Clinical Priorities Policy, Neurological Conditions
• Anissa Tonberg (AT), SG, Clinical Priorities Policy, Neurological Conditions
• Declan Doherty (DD), SG, Clinical Priorities Policy, Neurological Conditions
• Euan Bailey (EB), SG, Clinical Priorities Policy, Neurological Conditions
• Ellen McIntosh (EM), SG, Clinical Priorities Policy, Heart Disease (Minute recorder)

Invited attendee(s)

• Jamie Cochrane (JC), National Centre for Sustainable Delivery, NHS Golden Jubilee  (11am)

Apologies

• Tanith Muller (TM), NAoS/Parkinson’s UK Scotland
• Diane Fraser (DF), Social Work Scotland
• Dr Maggie Whyte (MW), Consultant Clinical Neuropsychologist, NHS Grampian

Items and actions

Welcome, introductions and apologies

SF welcomed the committee and SM to her first committee meeting. SM has joined the committee as a representative for the Centre for Sustainable Delivery (CfSD).

SF conveyed the Committee’s thanks to DD for all his work supporting the Framework and committee and formally wished all the best in his new role at the Chief Nursing Office.

SF introduced EM from Clinical Priorities Unit at SG taking minutes.

Minutes and matters arising from last meeting

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

Morna Simpkins gave an update regarding the situation in the Western Isles where the board decided not to replace MS and epilepsy nurse specialist vacancies, moving to a general Neurology Nurse Specialist model. A group of neurological charities (Parkinson’s UK Scotland, Epilepsy Scotland, MS Society and Neuro Hebrides) have met to pull together a survey to gather baseline evidence on how service is performing to use as comparison in future. A follow-up meeting will be organised with NHS Greater Glasgow and Clyde (GGC). 

Report on evaluation of funded projects

SF noted thanks for all involved in evaluation process of funded projects and highlighted the importance of drawing on expertise of committee during the process.

RB provided an overview of the evaluation process which was outlined in the committee papers. Scottish Government is now in process of writing out to most of the projects to feedback on areas where they could strengthen their evidence.

MS raised that the report stated a number of projects haven’t had a meeting. RB and SF clarified that this was a meeting of the assessors. RB clarified that evaluations for some projects were not returned within the timeframe to allow the meeting to go ahead, so conclusions were drawn from written forms. Evaluations were scheduled to ensure progress updates on all projects could be provided to the Committee.

MS stated as a member of the MS Society she would like to discuss the feedback provided to their project as part of the evaluation process.

WF stated that decisions need to be guided by an understanding that evidencing “softer” programmes of work is more difficult to capture.

RB clarified that many of the projects were assessed on basis of interim reports, so there is an understanding that evidence presented may not be complete. Projects are asked to consider the feedback provided in this set of evaluations and address it in future evaluations or final reports. The evaluation overview is reflective feedback at this stage.

DB raised future funding should be allocated to projects that align with Framework, that prove impact and have potential for scalability.

DB highlighted that impact is not just achieved through funding but also NACNC providing connections in and across health boards, practice sharing events and driving project adoption by other stakeholders (such as health boards). SF agreed and noted that Scottish Government are already working to support in this way.

GS highlighted that there should be a focus on scalability questions in evaluation. RB agreed that for future funding there will be a restricted application process that will include scalability as part of the criteria. SW highlighted that the last application form asked projects to describe plans for scalability.

DB asked if new projects would be eligible to apply for future funding. It was agreed that this should be part of a discussion on what future Framework priorities will be to inform the next stage of funding.

There was committee consensus on the evaluation process. There was agreement that future direction of framework priorities and funding needs further consideration by NACNC.

To finalise decisions on proposals for the next round of funding the following action was agreed:

Action 1: Convene an additional meeting of NACNC members to reassess the aims and commitments of the Framework, three years on from publication, to agree the current implementation commitments and how budget can be prioritised to addressing these.

Framework progress update

RB referred to update paper and RAG status report highlighting the following areas:

Practice sharing sessions

Practice sharing sessions on the 6th, 7th and 8th of December. Meetings are also being held with NHSBoard Acute Service Leads and HSCP Leads, and we are exploring the establishment of long-term Practice Sharing Network. Scottish Government have met with NHS Grampian, Lothian, GGC and Borders so far.

Prevalence Data Report

Prevalence Data Report will be published on the 13th of December and will be distributed via Scottish Government neurological team mailing list. There are plans to have meeting with researchers and clinicians early 2023 to discuss data in report and take suggestions for improvement in future iterations of the report. This was supported by the committee.

Action 2: Organise meeting with researchers and clinicians early 2023 to discuss data in Prevalence Data Report and take suggestions for improvement in future iterations of the report.

Quality assurance of Neurology Standards

Healthcare Improvement Scotland (HIS) anticipate completion and launch of the self-evaluation tool to support the Quality Assurance of Neurology Standards in early 2023. HIS are looking to implement dissemination and training April 2023 followed by informal support by HIS to implement the self-evaluation tool.

Redesign Project Group

SW updated on the following:

Clinical Nurse Specialists

Redesign Project Group (RPG) have had a preliminary discussion based on a paper authored by GG that now has ministerial approval to proceed. The work will focus on team-based approaches to delivering care rather than just Clinical Nurse Specialists. The Centre for Sustainable Delivery (CfSD) have led on CNS transforming nursing roles work and are supportive of the proposals. Scottish Government are to engage with CfSD, workforce and nursing directorates to focus the project aim and agree next steps.

JN voiced support for project especially due to its capacity to create national alignment and health board leadership. JN suggested she would prefer clinical nurse specialists be organised by disease competencies to allow standardisation of care. The committee agreed that if discussion is to be organised into disease-specific areas, we need to ensure orphan diseases are encompassed.

WF - focus should be aligned across settings to include Health and Social Care Partnerships and Primary Care. MS stated the NAoS will be happy to support this work.  There will be a call for volunteers from RPG who wish to be part of project.

Action 3: SG to engage with RPG members, CfSD, workforce directorate and relevant health and care professional  directorates to progress.

NHS Inform

SF recorded thanks to AT and the team for their work on NHS Inform and the successful progress they have made to date. SF also thanked those who have supported the team to obtain clinical sign-off. AT reported that eight condition pages have been published: functional neurological disorder, multiple sclerosis, huntington’s disease, Transverse myelitis, migraine, myasthenia gravis, post-polio syndrome and epilepsy.  Pages on motor neuron disease and eight types of muscular dystrophy have also been signed off and are just awaiting publication.  A remaining seven condition pages are in active development/review.

MS raised a request from a Neurological Alliance member for Foetal Alcohol Spectrum Disorder (FASD) inclusion. AT established that neuro-developmental work sits with Autism and Learning Disability team in Scottish Government, so for inclusion on NHS Inform this may not fall into the scope of the current memorandum of understanding.

A request has been received to amend information on the dementia page and AT has contacted dementia team to see if they wish to collaborate with NHS Inform on this.

Action 4: To confirm where Foetal Alcohol Spectrum Disorder (FASD) sits within the scope of clinical priorities memorandum of understanding for NHS Inform development.

RPG has received progress updates from CfSD on a number of initiatives to improve care pathways on the Accelerated National Innovation Adoption (ANIA).  

Draft guidance on the use of digital appointments in neuropsychology has been issued to committee for comment. MW has also received feedback from a workforce survey by the Heads of Neuropsychology group and will bring these results to next committee meeting.

Discussions are also progressing around incorporating neuropsychology modules into Enhanced Psychological Practitioner training.

A workforce tool for AHP colleagues is to be piloted in NHS Ayrshire and Arran and NHS GGC. A training session for AHP colleagues in mid-December will be followed by data gathering in early 2023. There may be potential for this to reach community settings.

Related Scottish Government policy

SF thanked CM for her paper on related Scottish Government policy. CM set out how committee and Government priorities can be aligned moving forward.

MS and CM to organise a meeting to discuss feedback from the Neurological Alliance on the related Scottish Government policy paper. GS is interested to hear feedback. MS will encourage Neurological Alliance to reach out to GS.

Any other competent business

Review of action points and update on meetings for 2022

• convene an additional meeting of NACNC members to discuss gaps in the Framework and how budget can be prioritised to addressing these. (Richard Brewster)
• organise meeting with researchers and clinicians early 2023 to discuss data in Prevalence Data Report and take suggestions for improvement in future iterations of the report. (Richard Brewster)
• to raise if Foetal Alcohol Spectrum Disorder (FASD) is within the scope of Clinical Priorities memorandum of understanding for NHS Inform. (Anissa Tonberg)
• SG to engage with RPG members, CfSD, workforce directorate and relevant health and care professional  directorates to progress. (Gerard Gahagan)
• MS/CM to meet to discuss NAoS feedback on related policy issues. (Claire Mellor)