National Advisory Committee for Neurological Conditions minutes: May 2022

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 David Breen, (DB), Consultant Neurologist, NHS Lothian
• Dr Callum Duncan (CD), Consultant Neurologist, NHS Grampian
• Tanith Muller (TM), Neurological Alliance of Scotland (NAoS) / Parkinson’s UK Scotland
• Judith Newton (JN), Clinical Nurse Specialist, NHS Lothian
• Rona Johnson (RJ), Neurological Alliance of Scotland (NAoS) / Epilepsy Scotland
• Maggie Whyte (MW), Consultant Clinical Neuropsychologist, NHS Grampian
• Richard Brewster (RB), SG Clinical Priorities Policy, Framework Delivery
• Claire Mellor (CM), SG Clinical Priorities Policy, Neurological Conditions
• Gerard Gahagan (GG), 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

• Gail Smith (GS), National Chief Officer Group
• Jamie Cochrane (JC), National Centre for Sustainable Delivery, NHS Golden Jubilee
• Diane Fraser (DF), Social Work Scotland
• Anissa Tonberg (AT), SG Clinical Priorities Policy, Neurological Conditions

Items and actions

Welcome, introductions and apologies

SF welcomed the Committee and MW to her first Committee meeting. MW has joined the Committee as a representative for neuropsychology.

A discussion took place regarding the recruitment of NACNC members. GG and RB are meeting an Health and Social Care Partnership (HSCP) representative with a view to strengthening HSCP input at a service delivery level. The Clinical Priorities team will report back progress of recruitment.

Review of previous minutes and actions

The Committee confirmed that the minutes reflected an accurate record of the previous meeting in March. There were no matters arising other than ongoing issues which were covered as part of the agenda.
Patient experience survey key headlines.

TM provided a background of the key findings from the Patient Experience Survey, #MyNeuroSurvey, which was coordinated by the Neurological Alliance of Scotland (NAoS).

The survey has been held every two years in England since 2014 and this is the first time this survey has been rolled out across all UK nations. The survey is aimed at people with neurological conditions and/or carers, and covers services for both adults and children.

It was noted that, at a UK wide level, the pandemic had impacted on expected response numbers due to a reduction in services and face to face consultations. Scotland received a higher number of responses compared with other nations.

The results highlighted a number of areas of concern, particularly delays and waiting times for treatment; the lack of adequate mental health support; and a lack of information and support provided following diagnosis.

In feeding back the results of the survey, a number of points were raised which include:

• in Scotland 49% of adults and 55% of children and young people experienced delays to access to a neurologist appointment
• 37% of adults and 38% of children and young people waited more than 12 months to receive a diagnosis
• 50% of adults and 67% of children and young people prefer face to face rather than virtual appointments
• in Scotland, 95% of children and young people and 80% adults said their neurological condition negatively impacts their mental health
• 40% of adults and 35% of children and young people with neurological conditions reported that their mental health needs were not being met ‘at all’
• the pandemic has had an impact on mental health with 78% of children and young people and 44% adults highlighting that their mental health has worsened through this period
• 57% adults and 22% of children and young people have not been referred, or directed to, support for their mental wellbeing
• 92% of children and young people highlighted they did not have a named worker to develop their plan from child to transition services
• in Scotland, 30% of adults and 38% of children and young people were given no information at diagnosis, and 26% of children and young people and 18% of adults said they received no explanation on their condition

Other information from the survey highlighted that there is a lack of knowledge amongst generalists around certain conditions and there were some examples, such as myasthenia gravis, where people found it difficult to find someone with sufficient knowledge on the condition.

Recommendations from the report include:

• gaining a better understanding of the prevalence of conditions in order to be able to adequately plan services and support
• deliver care seamlessly between different parts of the system, which includes better communications and sharing of information between primary, secondary and community care; and ensuring that health and social care systems recognise and support the services and information that third sector organisations can provide
• addressing the lack of mental health provision and recognise that specialist mental health support should be provided at the point of diagnosis and made available to people throughout the management of their condition
• preparing for the future care and support of adults and children with neurological conditions, acknowledging that the Framework for Action on Neurological Care and Support runs until 2025 and the need for a strategic framework to be in place for after this period
• the group further discussed the process and results of the survey. It acknowledged that the survey reflects a capacity problem across the system, with the pandemic exacerbating these issues 

There were 7881 adult responses across the UK to the survey, of which 10% (784) came from Scotland. 629 children and young people responded across the UK, of which 8% (50) came from Scotland. It was recognised that the number of responses was limited and that this was not a randomised group of participants and the survey may have attracted responses from people who had less positive experiences. It was suggested that the methodology should be reviewed to ensure a better cross section of respondents and that the methodology could be reviewed in the future to ensure a better cross section of respondents. Many surveys were distributed in clinic and had limited lead in time to prepare and on board staff and the lack of people attending face to face appointments may have had an impact on who completed it.

The survey was seen by the Committee to be a useful barometer of action needed. It will be published on 8 June 2022. TM agreed to circulate a link to the report to the group, once published.

NACNC and sub groups - audit of membership

RB updated on the recruitment to Healthcare Improvement Scotland (HIS) quality assurance working group and NACNC sub groups highlighting remaining gaps in membership.

Recruitment for members of these groups is underway. Recruitment of members for the HIS group is the current priority. Once complete, the focus for the Clinical Priorities Team will be recruitment to the other groups, including current gaps in NACNC membership. The group were asked to review the current membership across the groups and feedback on any suggestions for representatives.

It was noted that RJ was leaving her role at Epilepsy Scotland and, therefore, her role as Deputy Chair of the NAoS and her position on NACNC. RJ was thanked for her valuable contribution to both NAoS and NACNC. It is expected that her successor will be announced in August 2022.

Practice sharing

RB provided the group with an update on the progress of the funded projects through the Neurological Framework.

The tabled paper summarises successes and opportunities for shared learning. The Clinical Priorities team are in the process of setting up links to information on all of the projects through the Scottish Government website.

It was suggested that a planning group, to look at practice sharing events, might be helpful. These could be based on project themes such as those identified in the paper. The importance was emphasised of involving individuals identified as local leadership representatives in events. This will help to stimulate ideas for local improvement. RB agreed to look further at themes and formats of events and submit an updated proposal to the group. RB and GG aim to meet with HSCP leads to discuss the Neurological Framework in more detail and outline what they are looking to achieve and confirm support.

Annex A: annual operating plan 2022-23

Following discussion at the last meeting, RB had received and incorporated feedback on the Annual Operating Plan. It was noted that the neurological conditions prevalence data from the primary care system (SPIRE) has been received and, following analysis, will be published. It was agreed to invite Debbie Sagar (Senior Research Officer) to the next meeting in August to update.

Annex B: progress report

The progress report was discussed and the group confirmed that they were content with the report.

Redesign Project Group

• the Rehabilitation Framework is due to by published at the NHS Scotland event in June
• guidance on virtual consultations for neuropsychology is currently being developed
• Centre for Sustainable Delivery (CfSD) continues to progress work on clinical nurse specialist competencies. Work on a headache pathways paper was also underway, and factsheets being developed for general practice. It is hoped that this will be published by Autumn
• the AHP Workforce Group has also been set up. A pilot of AHP workforce modelling tools (common staffing model) will be discussed at the next Redesign Group meeting. There are further plans at national level to look at career pathways and training and these could also be considered at specialty level within neurology

​​Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

The Scottish Government has commissioned an external organisation, Blake Stevenson, to engage with stakeholders and produce a report on driving forward the implementation of the NICE guideline’s recommendations in Scotland. The report will be used to inform the next steps. A link to the final report will be circulated to the group once published.

The top ten priorities for future research on ME/CFS has recently been announced by the Priority Setting Partnership, formed between James Lind Alliance and Action for ME.

The UK Government has announced their ambition to develop an Action Plan on ME/CFS. The Scottish Government are currently working with UK Government to look at linking in with this work and consider the best approach for Scotland.

DB noted the need for a phased approach with education to support implementation of the NICE guidelines. CD and DB agreed to meet to discuss further and feedback to CM.

Any other competent business

TM raised the current situation in the Western Isles where a decision has been taken by the board not to replace MS and epilepsy nurse specialist vacancies, moving to a Neurology Nurse Specialist model. A lack of service user involvement in the decision making process was highlighted as a concern.

SW noted that she had discussed the situation with colleagues in NHS Greater Glasgow and Clyde (NHS GGC) and that the feedback suggests there would be improved links and support available from both clinical nurse specialists and Consultants in NHS GGC.

CD raised that a similar model is working in Orkney and Shetland, with support from NHS Grampian, which is working well.

JN noted that the approach is in line with Transforming roles and provides an opportunity to consider what roles and support are required, and how best to provide this.

Review of action points

• an additional representative for NACNC, to strengthening HSCP input at a service delivery level, would be identified and confirmed, Gerard Gahagan
• to circulate a copy of the NAoS Patient Experience Survey to the Committee, once published, Tanith Muller
• to review the NACNC and sub group representation and feedback on any suggestions
• to draft a practice sharing proposal identifying themes and formats for events and report back to the group, Richard Brewster
• to link with Debbie Sagar on progress with SPIRE data and invite her to the next meeting to update NACNC, Richard Brewster
• to circulate the Blake Stevenson stakeholder report once published, Euan Bailey