National Advisory Committee for Neurological Conditions minutes: November 2021

Attendees and apologies

Attendees

• Stephanie Fraser (Chair) (SF), Cerebral Palsy Scotland
• Susan Walker (Deputy Chair) (SW), NHS Greater Glasgow and Clyde
• Judith Newton (JN), Clinical Nurse Specialist, NHS Lothian
• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS) / Parkinson’s UK Scotland
• Rona Johnston (RJ), Neurological Alliance of Scotland (NAoS) / Epilepsy Scotland
• Richard Brewster (RB), SG - Clinical Priorities Policy, Framework Delivery
• Jamie Cochrane (JC), National Centre for Sustainable Delivery, NHS Golden Jubilee
• Claire Mellor (CM), SG - Clinical Priorities Policy, Neurological Conditions
• Anissa Tonberg (AT), SG – Clinical Priorities Policy, Neurological Conditions
• Declan Doherty (DD), SG – Clinical Priorities Policy, Neurological Conditions

Apologies

• Dr Jenny Preston (Deputy Chair) (JP), NHS Ayrshire and Arran
• Dr Richard Davenport, (RD), Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Gail Smith (GS), National Chief Officer Group
• Michelle Watts (MW), Primary Care Clinical Adviser
• Diane Fraser (DF), Adult Social Work Services, NHS Lanarkshire
• Euan Bailey (EB), SG – Clinical Priorities Policy, Neurological Conditions
• Susan Wallace – Clinical Priorities Policy, Rehabilitation (guest attendee)
• Stuart Baird (SB) – Public Health Scotland (guest attendee)

Items and actions

Welcome, introductions and apologies

SF welcomed the committee and noted apologies received from the above list of members. SF informed that the committee meetings will vary between Wednesday and Thursdays in 2022, to improve the participation at the meetings.

Review of previous minutes and actions

The committee confirmed that the minutes reflected an accurate record of the previous meeting in August. There were no matters arising. Ongoing actions will be covered as part of this agenda.

RB confirmed that DF shared contact details for social care colleagues regarding self-directed support, however he is yet to receive a response.

Update on framework

Membership of NACNC

The Committee Executive has been considering the membership of the committee and how this might be strengthened. EB is contacting the Royal College of GPs about obtaining a replacement for a primary care representative. SF highlighted the need to continue discussions with RD to identify a Consultant Neurologist before he steps down from the Committee. SF expressed disappointment that there were almost as many SG officials in attendance as members of the committee. JN offered to explore with a few colleagues about acquiring research representation on to the Committee.

Commitment 13 – research

The Clinical Priorities Team facilitated a meeting between the neuro progressive research network and interested members of the NAoS. Further discussions should also include academics and researchers. Planning and sustainability is vital, the ability to be involved in research can help to attract and retain clinicians. People with lived experience also have a strong interest in being involved in clinical studies.

Redesign Project Group
Virtual vs. face-to-face guidance for medical staff and the accompanying ‘quick guide’ should be signed off soon and ready for dissemination following the group’s next meeting in December 2021. The development of neuropsychology consultation guidance is likely to be progressed in early 2022. Further discussion is required on the development of AHP guidance.

The Committee commends the work of the Redesign Project Group for the virtual guidance.

Clinical nurse specialists

JN and JC have been working on the national competency framework, which is closely aligned to the Chief Nursing Office Directorate published Transforming Roles 08 document. This is to increase standardisation of level six and seven Clinical Nurse Specialists (CNS) roles across NHSScotland. The group is looking at a generic competency framework for Neurology nurse specialists with additional role specific competencies for each sub-specialty. A sub-group with representatives from across a wide range of NHS Boards and conditions has been established.

JN advised that the target is to develop national competencies for epilepsy, Parkinson’s Disease (PD), MS and MND nurse specialists in the first instance. Once these competencies are developed, other sub-specialties will be reviewed. Peer mentorship is also being considered as a key part of training and development.

SW queries the proposed governance process for sign off of the competencies. The group overseeing this will sign this off, CNOD will have oversight and this will come back to the committee once finalised.

RAG progress chart

RB clarified the methods behind categorising progress on framework priorities within the paper. It was agreed that areas of the framework that have not been agreed as priorities for the year should be highlighted in a different colour (e.g. grey) as the RAG shading can be misleading. SF highlighted the importance of the committee reviewing the priorities on an annual basis.

Quality assurance - Short Life Working Group

Healthcare Improvement Scotland (HIS) is in the process of recruiting a project officer to support the quality assurance commission and has allocated a senior reviewer to lead the work. A formal agreement is now in place and RB is working with HIS on defining roles and responsibilities for HIS, SG and NACNC for different areas of the commission. Key milestones have been agreed. A short life working group will be established to inform the work and be managed by HIS. A meeting is being arranged between HIS and the Committee Executive to discuss the parameters and the lifetime of the group. SW noted that the self-assessment will apply to all sectors not just NHS Boards and that NACNC should not become responsible for review of self-assessments. The Committee Executive and NAoS will nominate a Committee and third sector representative on the group, once the parameters and terms of reference has been confirmed.

Funding Round Three

Funding guidance

The Clinical Priorities team has been working with colleagues to update and publish the webpage for round three funding. RB confirmed that these updates were published prior to the meeting and a wider email announcement will be circulated imminently.

Methodology for decision making for round one and two project continuation

SF stressed that round three is not a continuation of round one and two, as there is an emphasis on a particular commitment. However, it is recognised that some projects may need further support to reach their full potential. The suggested methodology in paper six was agreed and NACNC members will be approached to take part in a session to assess continued funding beyond the current completion date.

A slot to meet with Health and Social Care Partnership Scotland (HSCPS) has been postponed due to HSCPS current focus on winter pressures. A written communication will be distributed to HSCPs. CM has been assured from Scottish Government colleagues that we can still approach the HSCPs despite the current challenges.

Public Health Scotland – overview of registries

RB provided a brief update in SB’s absence on this item. The Clinical Priorities team has held discussions with Public Health Scotland though their capacity to support this work has still to be formally agreed. The first step is to scope what data sets are needed and what resources are required to develop this work in a way that is manageable and realistic. Four medical neurologists have indicated that they can support this work by helping to identify key data sets that might form the basis for initial work. A business case will then be developed for agreement with PHS.

Rehabilitation Framework self-assessment

Susan Wallace sent late apologies. CM has agreed to pick this up with rehabilitation colleagues and to circulate a written communication to the Committee on the findings from the self-assessment.

Functional disorders

JC updated the Committee on the scoping of Functional Disorder pathways which will incorporate Functional Neurological Disorder, Fibromyalgia, and Irritable Bowel Syndrome. This piece of work will sit within the Centre for Sustainable Delivery.

AOCB

JN asked for the Committee’s advice on an approach received from a rehabilitation team within NHS Lothian. This highlighted the lack of an identified lead for delivery of the Framework. RB outlined that he hoped with the announcement of the quality assurance work this would provide an incentive for local improvement networks and cross sectoral leadership to become more established. It is not something that Scottish Government can stipulate.

 

No.	Action	For	Status
1	to circulate a draft version of November’s NACNC minutes and publish on the Scottish Government website to circulate meeting dates for 2022	Declan Doherty Declan Doherty	Completed
2	RB to confirm to GS if self-directed support discussion point has been retrieved	Richard Brewster	Completed
3	to progress with RD on identifying his successor to engage with RCGP on a replacement for MW to link in with colleagues on establishing a research representative	Richard Brewster Euan Bailey Judith Newton
4	to have further discussions with relevant stakeholders about how we meet Commitment 13	Richard Brewster / Declan Doherty
5	to categorise the priorities within the RAG that have been de-prioritised in grey font	Richard Brewster
6	to nominate a Committee representative to sit on the Quality Assurance, Short Life Working Group (SLWG) to agree a third sector representative to sit on the Quality Assurance, SLWG to seek nominations for SLWG once the Terms of Reference have been discussed between NACNC Executive and HIS	Stephanie Fraser / Susan Wallace / Jenny Preston Tanith Muller / Rona Johnson Richard Brewster
7	to update the Committee on the progress of organising a workshop with clinicians on disease registries. The Committee will then be able to support with next steps	Richard Brewster
8	To forward the email enquiry to RB from the rehabilitation team in NHS Lothian	Judith Newton	Completed