Patient Safety Commissioner Patient Reference Group minutes: August 2021

Attendees and apologies

• Donna O’Boyle, Professional Regulatory Adviser, Chair, Scottish Government
• Susan Cole, patient representative
• Charlie Bethune, patient representative
• Nan McGradie, patient representative
• Rona Johnson, patient representative
• Sharon Mercado, patient representative
• Lisa Megginson, patient representative
• Margaret Syme, team leader, Scottish Government
• Nicki Crossan, Senior Policy Manager, Scottish Government
• Pauline Bennett, Senior Policy Manager, Scottish Government
• Graeme Aitken, Policy Officer, Scottish Government
• Greig Chalmers, Scottish Government
• Frauke Hunter, Scottish Government
• Professor Alison Britton, Scottish Government
• Robert Law, Scottish Government
• Alex McEwan, Scottish Government
• Stephen Lea-Ross, Scottish Government

Apologies

• Lynne Nicol
• Anne Monie
• Claire Daisley
• Emma MacKay
• Vicki Middleton
• Wilma Ord
• Emma Murphy
• June Greenhorn
• Susan Doyle
• Janet Williams
• Anncris Roberts
• Jan Clark
• Karen Neil
• Nancy Honeyball
• Karen Keely
• Marie Lyon

Items and actions

Agenda

• welcome, introductions and scene setting
• minute and actions from last meeting
• update on Cumberlege recommendations
• update on case note review
• update on analysis of public consultation responses
• next steps
• feedback on Patient Reference Group
• any other business

Welcome, introductions and scene setting

Donna O’Boyle welcomed everyone to the final Patient Reference Group meeting, and asked attendees to introduce themselves.

Minutes and actions from last meeting

Minutes and actions from the last meeting were agreed.

Update on Cumberlege recommendations

Mesh and Reimbursement Bill

Greig Chalmers provided an update on the work that had been done with NHS Greater Glasgow and Clyde, National Services Scotland (NSS) and the ALLIANCE to produce 'My Path, My Health, My Life'. 

He explained that a lot of work had been done to try and give patients the assurance they need around the quality of the service in the new mesh centre in Glasgow, and that a clinical network was being established across the UK. He also highlighted that the centre had moved to a new building, with improved signage and more consideration of privacy, and that work was being done to expand the multi-disciplinary team.

Sharon Mercado asked the location of the new centre, and Lisa raised concerns that the signage had still not improved to a satisfactory level, and also that a number of women had been given appointments which had then been cancelled. 

Greig gave a continuing commitment to keep up progress in this area, and noted that the ALLIANCE are setting up a stakeholder participation group.

In relation to the procurement exercise, Greig outlined the two successful bidders – SPIRE in Bristol and Dr Veronikis in St Louis – who women would be able to go to for mesh removal surgery outside of the NHS.

On the Reimbursement Bill, Greig noted that this would mean women could be reimbursed for any mesh removal they had paid for privately in the past, and that a scheme was being set up to manage this. However, he highlighted that, as this is being set out in legislation, the Bill was now in the hands of the Scottish Parliament, who would determine the timing of it.

Donna asked whether Greig could provide any further information on the credentialing of surgeons, and it was noted that this sits with the General Medical Council (GMC).

Medicines

Frauke Hunter explained that she was standing in for Dionne Mackison, who was unable to attend the meeting. She gave an update on the work being taken forward through a UK Government Bill to establish a UK-wide medicines registry. In relation to establishing an epilepsy register, Frauke highlighted the pilot which is initially to be taken forward in three Scottish Health Boards, evidence from which will provide the basis for consideration of a Scotland-wide approach in due course. Additionally, Frauke highlighted that the Sodium Valproate Advisory Group, at the meeting scheduled for later this week, is to actively consider patient representation and membership. 

Charlie Bethune asked whether there was any update on any of the actions relating to Sodium Valproate. Frauke noted that she was not able to provide an update on that at present, but would look into it, and feedback following the meeting.

Action:

• Frauke Hunter to request an update on the outcomes from the Sodium Valproate Advisory Group meeting being held on 20 August 2021 and feed back to the group

Lisa Megginson enquired as to whether there will be a registry for Mesh and Grieg Chalmers confirmed that a pelvic floor registry is being established.

Susan Cole raised concerns about the fact that there was to be no patient representation at the Sodium Valproate Advisory Group meeting on Friday morning. Frauke noted that, as this was not her group, she was not in a position to agree to this, but undertook to ask the chair of the group about inviting patient representation.

Action:

• Frauke Hunter to ask the chair of Sodium Valproate Advisory Group about inviting patient representation on the group

Register of interests

Stephen Lea-Ross informed the group that discussions on the recommendation to set up a register of interests had taken place across the four UK nations, and a decision had been reached that employers should hold these registers, rather than the GMC. Work was now underway to determine how oversight and enforcement arrangements would be implemented in each of the four nations, as there were separate legislative and organisational arrangements in each.

Donna asked whether thought had been given to how this could be mandated in non-NHS environments, to which Stephen responded that this had been considered, and it was felt that this should be dealt with as part of the contracting process, although discussions were still ongoing about how this would be enforced.

Update on case note review

Professor Alison Britton explained that she had been asked by the Scottish Government to undertake a case note review of the safety and efficacy of mesh, initially intended to be focussed on women who had undergone partial mesh removal surgery, however the scope of the review had expanded to encompass a wider approach to include women affected by mesh.

Of the 47 women initially invited to take part in the review, 22 came forward, and Alison had met individually with the majority of participants, with interviews each lasting up to two hours. She expected to have completed the interviews by the end of August, and would then be producing a report, a first draft of which would be shared with all of the women who had participated. A transcript of the interviews was also shared with the women.

Alison explained that a team of people supported her in her work, and that there was a website which provided further information. In terms of lessons learned for the future, she noted that she was giving consideration to how the process could lessen the burden for the patients, and also to how the process could be made more efficient and cost-effective, as she would be keen to see the Scottish Government adopt this kind of process to support patients in the future. 

Group members indicated that they would be keen to see such a process adopted in other areas, and highlighted that in much of the work that has been done to support people, the trauma they have faced, and the impact on their mental health, has been overlooked.

Lisa suggested that it would be useful for clinicians, and future clinicians, to hear patient stories as part of their training, so that they can better understand the impact on people of how they communicate with them and treat them. Donna indicated that this does already happen, but she was unclear of the extent to which it happens, and is perhaps an area for further discussion.

Nan McGradie indicated that the fact Alison was working with patients on the review was very positive.

Sharon highlighted that there are also mental health issues that have come about through the mesh process, more attention should be paid to this as most often the focus is on physical health.

Sharon and Lisa noted that they had both been involved in the case note review, and thanked Alison for the approach she had taken, saying that they felt this had been a positive exercise for them.

Alison undertook to keep the group updated on progress.

Update on analysis of public consultation responses

Nicki Crossan spoke to some slides, outlining highlights of the analysis of the public consultation responses. She noted that this presentation focused only on the high level results, rather than describing every response received, and that there was nothing too surprising in the results, as these largely echoed what the Patient Reference Group had said during prior meetings. The area that would require the most in the way of further consideration was around the scope of the role, where there had been quite mixed views on whether this should initially focus on medicines and medical devices only, or should expand into other aspects of patient safety from the outset.

Following the presentation, Alison commented that many of the themes coming through in the analysis were common themes generally. She highlighted that one consideration, which had not been detailed in the presentation, was the need for communications support, to allow the Patient Safety Commissioner to effectively communicate and engage with the public.

It was noted that the analysis report would be shared with members of the group prior to its publication.

Action:

• Quality and Safety Team to share analysis report with PRG prior to publication

Next steps

Donna referred the group to the terms of reference (ToR) of the new group which was being set up to take forward the development of proposals, and ultimately legislation, for the establishment of the Patient Safety Commissioner role. These had been circulated in advance of the meeting.

She noted that consideration had been given to asking people to apply to join the group, but the decision had been taken that nobody should be excluded from the group, and potential members were therefore being asked, instead, to agree to some conditions for joining, which could be found in Annex B of the ToR.

Donna asked that if any members of the PRG wished to join that new group, they email the PSC mailbox to make the team aware.

Feedback on Patient Reference Group

Given time restraints, Donna asked that if any members of the group had feedback on how the PRG had been run, they email this to the PSC mailbox. She indicated that this would be very gratefully received, as the team were keen to learn lessons and ensure that – particularly as the new group is set up – any problems are resolved, rather than being taken into this new group.

Any other business

Donna informed the group that Nicki would be leaving the team at the end of the week, and noted with thanks Nicki’s contribution to the work we have taken forward thus far, and wished her well in her new post.

Margaret mentioned that the team had been meeting on a regular basis with Charlie Bethune, Marie Lyon and Sharon Mercado, but that others would be welcome to join those meetings if they wished, and the invite would therefore be forwarded on. She noted that these tended to be quite short, focussed meetings.

Action:

• Graeme Aitken to forward meeting invitation for regular meetings to all PRG members

Action summary

• Frauke Hunter to look into status of actions on Sodium Valproate, and feed back to the group by email
• Frauke Hunter to ask the Chair of the Sodium Valproate Advisory Group about having patient representation at the meeting on Friday 20 August
• Alison Britton to update the group on the case note review work
• Quality and Safety Team to share the consultation analysis report with PRG prior to publication
• Graeme Aitken to circulate invitation for regular update meetings to all PRG members

Papers

• draft terms of reference