National Advisory Committee for Neurological Conditions minutes: August 2021

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 Richard Davenport, (RD), Consultant Neurologist, NHS Lothian
• Dr Judith Newton (JN), Clinical Nurse Specialist, NHS Lothian
• Gail Smith (GS), National Chief Officer Group
• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS) / Parkinson’s UK Scotland
• Rona Johnston (RJ), Neurological Alliance of Scotland (NAoS) / Epilepsy Scotland
• Diane Fraser (DF), Adult Social Work Services, NHS Lanarkshire
• Richard Brewster (RB), SG - Clinical Priorities Policy, Framework Delivery
• Jamie Cochrane (JC), SG – Modernising Patient Pathways Programme (MPPP)
• 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

Apologies

• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Gerard Gahagan (GG), SG – Clinical Priorities Policy, Team Leader
• Michelle Watts (MW), Primary Care Clinical Adviser

In Attendance

• Bette Locke (BL), SG - AHP Professional Advisor for Rehabilitation (present for Rehabilitation Framework update – item 3)
• Claire Mellor (CM), SG - Clinical Priorities Policy, Neurological Conditions
• Derek Tasker (DT), Programme Manager, NHS Tayside (present for NHS Tayside Breakthrough Series update – item 4e)

Items and actions

1. Welcome, Introductions and Apologies

SF welcomed the Committee and introduced two guest presenters BL and DT and further guest attendee CM to the Committee. SF noted apologies received from CD, GG and MW.

2. Review of Previous Minutes and Actions

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

3. Rehabilitation Framework Update

BL provided an update on the implementation of the Rehabilitation Framework. She updated the committee on the progress that has been made, outlined the programme aim and discussed work that is currently underway. Key stakeholders have been asked to complete a self-assessment and the analysis of this will be available in October.  The Committee asked for the findings to be shared at that point with NACNC members.  Following this work the Rehabilitation Advisory Committee will work on  the development of an improvement plan. The Committee offered to support this work and there was agreement to link up again when developing priorities.

The Committee asked about the impact of COVID-19 on rehabilitation services.  It was confirmed that the demand for rehabilitation services has greatly increased as a result of COVID-19.

4. Framework Progress Updates

Progress overview / RAG status

AT updated the Committee that proposals for governance arrangements are being drafted with NHS Inform. The Memorandum of Understanding would sit between the lead clinician’s host NHS Board and NHS Inform so both have accountability. A formal written update will be circulated once this has been progressed.

AT confirmed that Third sector organisations will have a role in developing guidance but that NHS Inform required to work with a lead clinician to input and assist in producing the content on NHS Inform’s website. RD suggested that perhaps utilising the resource of a single lead clinician who will provide clinical sign off and review may have more benefit because the more people you have the greater likelihood of variation in styles and inconsistency. Consideration should be taken when approaching clinicians, as all are under extreme pressures and working to full capacity. TM emphasised the importance of  health information being patient centred.

A webinar has been organised by NHS Healthcare Improvement Scotland (HIS) on 25 August 2021 for promoting Anticipated Care Planning (ACP) to build confidence amongst professionals as an approach to advance care planning for people living neurological conditions. We want to move people away from the perception that ACP is just about palliative care.

The Clinical Priorities Team recently met with HIS and agreement on the commission on quality assuring health and social care providers progress against the general standards of neurological care is being finalised.

The first Neuro newsletter was issued by the Clinical Priorities team at Scottish Government, and received over 700 views.

Due to Covid-19, all Scottish Primary Care Information Resource (SPIRE) requests have been delayed, and the prevalence request may not be available until 2022. Progress is being made to identify the correct read codes in the meantime.

MPPP are facilitating an event for the clinical community on 1st September covering patient initiated review in West of Scotland, Clinical Nurse Specialist Headache Service, and low intensity group in Functional Neurological Disorder.

Redesign Project Group

SW updated on progress with the Redesign Project Group, including development of guidance for virtual vs face-to-face consultations. NAoS issued a survey to understand the views of people with lived experience of virtual consultations. The survey recorded 267 individual responses and the findings will be presented at the Redesign Project Group at their next meeting on the 8 September. A webinar on good practice in virtual appointments aimed at Allied Health Professionals and neuropsychologists has been organised for the 16 September.

Disease registers strategy paper

The Committee supported the paper noted the potential resource implication and the need for a strategic approach to developing disease registers. RB highlighted that we need to align and work with the National Digital Platform who have previously advised they are not looking for new policy areas to support in developing disease registers. There needs to be a pragmatic balance between delivery of the framework commitments and available capacity in other teams. A dedicated budget may help to support progress and RB will come back with more detailed estimates for the next NACNC.

Measuring outcomes paper

This paper was noted by the Committee. Further progress will be reported to the November NACNC.

Funded Innovation Projects / Practice sharing papers

These papers were discussed under agenda item 6. The paper is recommends that existing funded projects will be asked to for more information on their proposals for scalability and sustainability in their interim evaluation reports.

NHS Tayside Breakthrough Series Update

DT presented an update on NHS Tayside’s Breakthrough Series Collaborative. DT highlighted the models of services with NHS Tayside and the variation across the 3 Health and Social Care Partnerships. The focus of the project is on discovery, with an emphasis on issues around transitions of care, and touches the majority of the Neurological Framework’s aims and commitments.

The overall aim of the first BSC Learning Set in May was to develop improved communication and information sharing systems for neurological patients, across care providers in secondary, primary, community and social care.  It was well attended and issues raised included demarcation for patients age over 65 years, improving access to social care services following discharge from hospital.

The slides will be shared with NACNC members.

5. Framework progress discussion

SF opened the discussion by questioning whether there were representatives for all relevant interests on the Committee and whether we are focussing on the right areas of work. One of the commitments within the Framework is about research, currently flagged red in the RAG chart. It may be seen as being without an appropriate representative. The Clinical Priorities team have been liaising with the Chief Scientist Office (CSO) on policy work but noted that a broader understanding of neurological research agenda is needed to fulfil this commitment. Research is also being undertaken without going via the CSO and a separate meeting was proposed with members of the Committee to explore this. The remit around the Committee’s commitment in embedding self-directed support was flagged.

A working sub group of the NAoS has scoped key issues for paediatric neurology and drafted a position paper summarising these. There is significant alignment with the Framework. Clinical Priorities team will meet with Dr Edward Doyle, Paediatric Advisor, and the Children and Young People Policy Team to discuss engagement with paediatric neurology. NACNC does not currently have accountability for paediatric issues.

6. Future funding discussion

SF asked the committee to consider if there are areas of the Framework that are under supported and that should potentially be targeted in future funding rounds.

Whilst reflecting on the previous round of funding, Third sector representatives expressed frustration with communication and the timing of decision making during the pre-election period. It was also felt that feedback on applications could be improved.

A commissioned approach to funding was suggested. This could be targeted or possibly spot purchasing and cover challenges around innovation. It was agreed that more time was needed on identifying where we would like the Framework impact to be. It was noted that the Cabinet Secretary is frustrated by the lack of spread and change across services. Exit criteria should be included as part of any assessment. SW, JP, JC, GS (if available), SF, DF all volunteered to participate in a discussion around what this might look like. RD agreed to provide feedback to SF.

7. AOCB

RD highlighted the effects of the immediate postponement of the National Institute for Health and Care Excellence (NICE) guidelines for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CFS) on 18 August.

8. Review of action points

 

No.	Action	For
1.	To circulate a draft version of NACNC minutes and publish on the Scottish Government website.	Declan Doherty
2.	To circulate a) presentation BL shared with the Committee and b)  the report published in October, as well as linking in with the Committee	Declan Doherty
3.	To share recording of the ACP webinar with the Committee	Anissa Tonberg
4.	To provide comments about NHS Inform clinician input	Richard Davenport
5.	To engage with NAoS on third sector’s role on NHS Inform.	Anissa Tonberg
6.	To confirm estimates costs of disease registers at next NACNC meeting in November.	Richard Brewster
7.	To update on the progress of the measuring outcomes work at next NACNC meeting in November.	Richard Brewster
6.	To circulate DT’s presentation on BSC with the Committee.	Declan Doherty
7.	a) To provide comments on research representation / gaps within the Committee and Framework. b) JP/TM will feed in comments regarding research gaps out with the CSO. c) To engage with CSO and other organisations about research related to neurology.	Richard Davenport Jenny Preston / Tanith Muller Richard Brewster
8.	a) To link to SDS colleagues in Social Care. b) To retrieve discussion points raised by GS regarding SDS.	Diane Fraser Gail Smith
9.	a) To convene a group meeting regarding the approach to round three of the funding process. b) To obtain RD’s feedback on the funding process separately.	The Clinical Priorities Team