National Advisory Committee for Neurological Conditions minutes: November 2020

Attendees and apologies

Attendees

• 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 Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS) / Parkinsons UK Scotland
• Gail Smith (GS), Angus Health & Social Care Partnership
• Richard Brewster (RB), SG - Clinical Priorities Policy, Framework Delivery
• Gerard Gahagan (GG), SG – Clinical Priorities Policy, National Framework Lead
• Jamie Cochrane (JC), SG – Modernising Patient Pathways Programme
• Debbie Sagar (DS), SG – Senior Researcher, Health & Social Care Analysis
• Amanda Cronin (AC), SG - Leading Improvement Team, Improvement Advisor
• Anissa Tonberg (AT), SG – Clinical Priorities Policy, Neurological Conditions

Apologies

• Dr Richard Davenport, (RD), Consultant Neurologist, NHS Lothian
• Anita Stewart (AS), SG – Clinical Priorities Policy, Team Leader
• Declan Doherty (DD), SG – Clinical Priorities Policy, Neurological Conditions

Items and actions

Welcome, Introductions and Apologies

SF welcomed the Committee, and there were three apologies noted as above. It was also noted that Anissa Tonberg is no longer Vice Chair of the NAoS however was attending in her new capacity as a secondee to Scottish Government.

Review of previous minutes and actions

The Committee confirmed that the minutes reflected an accurate record of the last meeting in September. There were no matters arising, ongoing actions will be covered as part of this agenda.

Update on Covid-19 situation (from SG, NHS, LA and 3rd Sector perspectives)

TM provided a third sector update. A recent meeting of the Executive of the NAoS highlighted several key issues:

• Financial viability and capacity, with some organisations reporting redundancies. Face-to-face clinical services and therapies are reopening however with reduced capacity. Some organisations have also reinstated face-to-face non-clinical services as it was felt that service users were not divulging the full extent of their difficulties during virtual consultations.
• Deterioration of peoples’ conditions during lockdown; both among the neurodegenerative conditions and in more stable conditions where people have not been accessing rehab.
• Shielding advice; particular issues were raised around children in Tier 4 areas who have been on the shielding list not going to school and implications for accessing care. Concern was also raised more generally over people in the clinically vulnerable/not shielding category.   

SW gave a brief overview of the initialresponses to a questionnaire on health board remobilisation plans. Responses have been received from 4 health boards to date; DD will chase up further responses and SW will give a fuller update when these are received and analysed. The sample is currently too small to identify any strong trends, however the following general points were made:

• There are wide variations in both the amount of activity and in the ratios of face-to-face, telephone and virtual consultations for patients.
• The survey seeks data on neurology and neurorehabilitation services, however data on neurorehabilitation has been limited as most respondents do not manage that service.
• Some boards are reporting a reduced wait for consultant neurologist appointments in comparison with March 2020, some boards report increased waiting times. 

CD gave an update on the current situation within his own service and a discussion ensued over the appropriate use of video consultations. This topic was marked as an action point for future committee discussion.

• Concern was noted at reports of a ‘national target’ of 70% remote and 30% face-to-face consultation for outpatient services – however it was not clear where this had originated and RB will aim to clarify. 
• CD reflected that video appointments work best with return patients, e.g. for condition management, and questioned the safety of carrying out first assessments of new patients via video, when neurologists require to physically examine the patient. Committee members stressed the importance of the clinical context and patient communication needs and circumstances when selecting the consultation medium. 
• SW noted that the clinician vetting the referral can choose the consultation format if the vetting system is set up appropriately, although the system does not take patient input into account.
• JP highlighted that the proportion of face-to-face vs. remote consultations which is currently happening is due to imposed restrictions, and does not necessarily reflect what clinicians would opt to do by choice. 

RB provided a brief SG update. Christopher Doyle has moved over to establish a Long Covid team within the Clinical Priorities Unit. This sits within the chronic conditions remit of the team, and is not exclusive to neurology but links with other condition work such as ME/CFS and respiratory work. The NACNC will link in with some of the group’s future activities. 

Neurological Care & Support Framework - Progress Update

Progress overview and report

RB updated the Committee on progress towards the five primary aims for year one, highlighting the funding of 17 innovation projects and reflecting upon the work which has recently taken place with the NAoS towards mapping and stakeholder engagement, and with NHS Tayside in developing a Quality Management System. SG officials have been in discussion with Healthcare Improvement Scotland and various heath boards regarding Quality Assurance and are currently working to address resource issues regarding this. The team is also progressing on the national provision of neurological information, with NHS Inform. RB will recirculate the latest draft of the RAG progress chart to the Committee for comment.

There was discussion of SG plans to understand more about projects funded via the Self Management Fund, administered by the Health & Social Care Alliance. The aim is to identify aspects which may be transferable to a neurological care context, in addition to the information gathered through the upcoming NAoS mapping exercise to identify what self-management services people with neurological conditions are accessing. It was also acknowledged that there will be other relevant self-management work, outside of the projects identified via these channels.

Communications plan

There was discussion of the draft Communications Plan. RB highlighted the close working between the SG, the Committee and the NAoS to deliver a cohesive approach. The important role of collaboration with local leadership, which is currently being explored by GS. SF urged that stakeholder communications focus on tangible outcomes over describing process.

GS reflected that the biggest priority for H&SCPs is the upcoming vaccination programme, however there is some interest in the framework and she is currently reaching out to colleagues again, while prioritising the work in Tayside to develop a collaborative, integrated approach. SF thanked GS for her efforts.

Quality Management System

AC described work with NHS Tayside to embed a Quality Management System within the SG-funded Breakthrough Series Collaborative project there. The project was identified as possessing the requisite elements; the project leads are currently considering the management structure required to support the additional aspects regarding Quality Planning and Quality Assurance. One aim is to create an information feedback loop with the Committee for input, while taking care that the frequency and type of reporting is not burdensome. AC anticipates having further information to circulate digitally ahead of the next Committee meeting.

Neurological Framework round one funding update/evaluation

• The Committee endorsed an evaluation plan presented by RB, whereby projects will be divided up among Committee members and SG officials to undertake ‘sponsor meetings’ between December and March.  The longer term aim is the potential wider roll out of successful projects. It was agreed that further discussion was required around the evaluation approach for small vs. larger projects.
• The timing of round two funding allocation was discussed. It was agreed in principle that the second round would close in mid-February 2021, with funds to be disbursed in March. The Clinical Priorities Team will coordinate on communicating how projects can apply, guidelines, form, and opening date for applications.

Neurological Framework round one funding update/evaluation

The Committee endorsed an evaluation plan presented by RB, whereby projects will be divided up among Committee members and SG officials to undertake ‘sponsor meetings’ between December and March.  The longer term aim is the potential wider roll out of successful projects. It was agreed that further discussion was required around the evaluation approach for small vs. larger projects.

The timing of round two funding allocation was discussed. It was agreed in principle that the second round would close in mid-February 2021, with funds to be disbursed in March. The Clinical Priorities Team will coordinate on communicating how projects can apply, guidelines, form, and opening date for applications.

Neurological Framework – deep dives 

Commitment 12 – data update

DS spoke to a discussion paper on data gathering in neurological conditions under commitment 12 of the framework, and detailed progress to date. She reflected upon some of the challenges of this work, namely data availability, incompatible recording systems, coding issues, and restrictions to staff sharing data. The aim is to identify those with neurological conditions in order to better address their needs and assess outcomes.

DS is working to support the Clinical Priorities Unit with its Long Covid work, via the SG Covid Scottish Data and Intelligence Group. Many of the data issues which have been identified for this setting overlap with the challenges faced in neurological data gathering. It is hoped that work undertaken to address this may also improve the data gathering infrastructure around neurological conditions.

There was some discussion on the nature of Long Covid and about potential impacts upon access to neurorehabilitation and other services. DS reflected that the data gathering would help in identifying under-resourced services. Committee members supported this investment in improving data gathering, but stressed the importance that neurological conditions remain prioritised within this.

Committee members made a number of suggestions around coding and identification of cohorts. SF noted that the action diagram does not presently include Local Authority/Social Work data. DS recognised that this data would be helpful but very difficult to retrieve through local authority systems, however will consider this point further.

There was discussion about the evolving National Digital Platform and condition-specific registers. DS noted that there is a new Digital Health and Social Care Strategy in development. JC undertook to seek information on this and share with the Committee for comment.

The committee approved the actions described in the paper on data gathering.

Workforce commitments – NACNC subgroup

SW updated Committee members on progress to date in establishing a subgroup on workforce commitments. The draft terms of reference and proposed membership list has been circulated and a preliminary set-up meeting held, with a fuller group meeting scheduled for January. It was noted that Anita Stewart, Clinical Priorities Unit, had committed to provide an update where appropriate on any national strands of this work, to keep the group informed of any wider initiatives. The Committee thanked SW and SG colleagues for their work in establishing the subgroup.

Scottish Access Collaborative

It was noted that Jamie Cochrane had circulated a paper detailing progress on behalf of the Scottish Access Collaborative. SF asked that any comments from Committee members should be emailed to JC.

AOCB

It was agreed that future meetings would be held via Microsoft Teams rather than Zoom, due to access issues for those in NHS and SG.

It was noted that the CPG on disability had submitted a PQ regarding funding for rehabilitation services. RB will update the Committee on this once it has been answered.

It was noted that the National Advisory Committee on Rehabilitation will meet for the first time in January 2021. SF wished to extend an invitation from the Committee to meet with a representative from this new group.

Agree next steps and next meeting

No.	Action	For
	To publish NACNC minutes for NACNC meeting in September on Scottish Government website. To circulate MS Teams invites for meetings.	Declan Doherty   Declan Doherty
2.	To extend an invitation to the Scottish Government Shielding Policy team to discuss issues for people with neurological conditions with committee members.	Clinical Priorities Team
3.	To chase up health boards to return completed mobilisation plan questionnaires. To feedback summary review to Committee once further plans received.	Declan Doherty   Susan Walker
	To clarify reported aim of 70% virtual / 30% face-to-face consultations in outpatient services.	Richard Brewster
4.	To circulate the latest draft of the RAG progress chart regarding framework delivery to the Committee, for comment. To email RB any comments on this by 4/12/20.	Richard Brewster   Committee
	To continue trying to identify individuals with an interest in neurological conditions from Health & Social Care Partnerships.	Gail Smith
	To circulate any further input received from NHS Tayside regarding development of Quality Management System and update the Committee at next meeting.	Amanda Cronin
	To contact Committee about next steps to apportion funded projects to members for evaluation support, and follow up. To send RB the MPPP ‘standard agenda’ for project evaluation meetings, for reference.	Richard Brewster     Jamie Cochrane
5.	To consider addition of Local Authority/Social Work data within commitment 12 data gathering work and feed back to NACNC on data progress..	Debbie Sagar
	To seek information on new National Digital Strategy for Health and Social Care and share with the Committee for comment.	Jamie Cochrane
	To email any comments regarding update paper on Scottish Access Collaborative work to Jamie Cochrane, copied to SF and SW.	Committee
6.	To update the Committee once a PQ submitted by the CPG on Disability regarding funding for rehabilitation has been answered. To link with the team developing the rehabilitation framework and explore how can strengthen links between the rehabilitation and neurological frameworks.	Anissa Tonberg     Richard Brewster
	To extend an invitation from the Committee to meet with a representative from the new National Advisory Committee on Rehabilitation	Clinical Priorities Team

Date/time and location of next meeting

NACNC members are invited to join the next full NACNC virtual meeting on 24 February, 2.00pm – 4.00pm.