Meeting Notes

• The wider resourcing issues discussed at the previous meeting remained unresolved, and in particular the Chair noted it was not sustainable that there was only one person to cover communications and engagement. There had been no response from DHSC’s Permanent Secretary to the letter the Commissioner had sent him in January. The lack of clarity well into the second year of the Commissioner’s term was noted and it was agreed the Advisory Group would write a letter to the Chair of the Health and Social Care Committee (Action). [post-meeting: it was decided this letter be sent in the first instance to the Secretary of State for Health and Social Care]
• The Chair provided an update on the redress project. The Commissioner’s report published in February had received wide ranging coverage in the media, and the Chair thanked Julia Cumberlege for the questions in the House of Lords. The Commissioner was awaiting a response from DHSC, and this was expected by 7 May (the three-month deadline given).
• The Commissioner had been asked to chair the Martha’s Rule Oversight Group which would meet every two months, with DHSC providing the Secretariat. NHS England had issued an expression of interest on 27 March formally inviting NHS providers of acute adult and/or children and young people’s inpatient care, with an existing on-site 24/7 critical care outreach team (CCOT) or paediatric critical care outreach team (PCCOT) infrastructure, to submit expressions of interest to participate in the first phase of the Martha’s Rule programme throughout 2024/25 (published on NHS England’s website – https://www.england.nhs.uk/patient-safety/marthas-rule/ ).
• The Commissioner’s recommendation to improve the safe use of the most potent teratogenic medications had been accepted by NHS England in a letter from the National Medical Director, Stephen Powis (https://www.patientsafetycommissioner.org.uk/our-work/recommendations/ )
• In February the Commissioner sent a joint letter with Rob Behrens, outgoing PHSO, to the DHSC calling for an overhaul of the complaints system.
• Later on in the meeting the Chair also mentioned having written to Amanda Pritchard, NHS England CEO to request that an element of patient safety be included in the Planning Guidance.
• The Chair had attended a number of speaking engagements and meetings including:
  • Hosting the HSSIB Board Development Day
  • Meeting with members of the shadow Labour health team, including Karin Smyth MP
  • Meeting with DHSC officials leading Declaration of Conflicts of Interest pilots
  • Nuffield Trust Summit
  • 1st meeting of the PSRC Network Advisory Board (SafetyNet), which Mike Durkin chairs.
  • Decision making and consent virtual roundtable
  • MedTech Programme Board and their patient engagement forum
  • Meeting with RNIB – the accessibility of health care and information

• Public consultation on the Principles of Better Patient Safety
• The Patient Safety Atlas of Powers – which would pull together and clearly set out the remits and powers of the main safety organisations in the healthcare space, to identify common or overlapping objectives and powers, and to facilitate better working together.
• A collaborative project with groups of patients with additional needs on medicine and medical device patient safety.
• A report on closed loop medicines administration and the barriers to implementation.

• Work proceeding at pace on the Annual Report to be laid before Parliament in July
• Response from DHSC on redress report
• Operationalising the business plan
• Principles consultation

• The recruitment process was underway for the now vacant Chief of Staff post and discussions continued with DHSC on wider resourcing issues to enable the office to fulfil its statutory functions effectively. The lack of resourcing – particularly in data and policy functions – remained and the Chair had written to the Permanent Secretary at DHSC to highlight her concerns. Members offered their support and there was a discussion on possible escalation routes if no tangible response was received.
• The Chair reported that she had made a formal recommendation to NHS England that they have a fully funded and resourced system for improving the safe use of the most potent teratogenic medications, through a National Quality Improvement Programme for Integrated Care Systems, starting with the safe use of sodium valproate. The Commissioner believes that this should be implemented by September 2024 for sodium valproate, before expanding to cover any medication with a Pregnancy Prevention Programme by September 2025.
• The Chair was growing a network of health executives to have virtual monthly conversations about safety to identify gaps and share experience.
• The Commissioner had received a Rule 9 request from the Thirlwall Inquiry to provide a written evidence statement.
• The Chair updated members on some of the meeting/speaking engagements she had participated in to amplify patient voice, including:
  • Race and Health Observatory Neonatal Report roundtable
  • Hospice UK National Conference
  • NHS Assembly
  • MedTech Patient Engagement Forum
  • Global State of Patient Safety Report launch
  • MHRA Board meeting
  • Medicines Safety Improvement Programme Board (MedSIP)
  • MedTech Programme Board
• The Chair highlighted work to increase the prominence of the yellow card reporting functionality on EMIS to improve reporting activity in primary care.

Action: Secretariat to arrange 1:1s between Chair and members.

• To drive the alignment of the healthcare system to deliver a just and learning safety culture
• To support initiatives which amplify all patient voices and empower patients to make informed decisions about their care
• To advocate for partnerships which embed patient safety and patient voice throughout the healthcare system

• Launch of strategic priorities
• Martha’s Rule Working Group (23 Jan)
• Sunday Times interview
• Launch of Redress Report (7 Feb)
• New Chief of Staff in post

Beyond April future meeting dates in the diary are:

• Thursday 18 July
• Thursday 7 November

• The Patient Safety Commissioner’s first annual report had been laid in Parliament and published on the website in July.
• As of yesterday (11 October) legislation came into force meaning sodium valproate will be dispensed in its original packaging to ensure patients always receive the safety information supplied on the label and in the Patient Information Leaflet alerting them to the risks if used during pregnancy. The Chair said this was a step forward and added that she wanted to ensure more action was taken regarding monitoring the safe use of sodium valproate and teratogens more generally and that she intended to make a recommendation to NHS England.
• The Chair reported positive progress being made on the Outcomes and Registries programme as part of the MedTech Strategy and she was pleased that patient voice was being incorporated at different points and they were developing patient reported outcome measures (PROMS).
• The Chair had met with the Secretary of State for Health and Social Care and discussion points had included Martha’s Rule, yellow card reporting, and training for non-executive directors.
• The Chair gave an overview of the series of sprints that had taken place in order to make Martha’s Rule a success. The 4th and final sprint was scheduled for next week, followed by recommendations to the Secretary of State. In discussion members raised a number of themes including patient power to raise concerns, the importance of culture and organisational development, how to make Martha’s Rule an embedded element within a broader umbrella of restorative culture, not done in isolation or as an add-on.
• The Chair had attended the WHO’s World Patient Safety Day 2023 Global Conference ‘Engaging patients for patient safety’, worked on the WHO Global Patient Safety Charter and had chaired a session on patient safety as a human right. She had also participated in a WHO ad hoc working group meeting for a report on “Patient experiences of harm: lessons for the health care system”
• The Chair offered to share other updates by email after the meeting. (Action)

• Attending the public launch event (early 2024)
• Providing advice on how to publicise the report and project
• Sharing experience from members’ own work with the redress team
• Supporting the launch communications
• Lobbying on this issue and/or taking a public view on redress if able to do so
• Identifying colleagues or contacts to attend the launch event or support this work in another way
• Suggesting other people the redress team may want to engage with prior to publication to move through the stages of change model (Action)

• The team now had desk space within the NHS Confederation and it felt that the office had moved out of the initial ‘set-up phase’.
• The Chair thanked Julia Cumberlege for asking the recent questions in the House of Lords on sodium valproate.
• Launch of PSC website.
• The Commissioner had published a new resource for patients with complications from pelvic mesh which was co-produced with campaign groups and was available on the PSC website. Rachel Power offered to include a link on the Patients Association website (Action).
• The Commissioner had been invited to join the MedTech Strategy Programme Board, and had also been working to support patient involvement in the Outcomes and Registries Programme.
• Two staff had joined the team to work on the redress project, and the Chair said she was keen to understand redress in its totality, including restorative practice. An expert would input to the project.
• The Chair had attended the recent Patient Safety Movement Foundation summit which had included inspirational patient speakers, the sharing of excellent examples of good practice, and there had been much interest in the PSC role and several offers of help.
• There had been no further update from DHSC on confirmation of budget allocation or resourcing, which put at risk the Commissioner being able to fulfil all her statutory obligations, including the consultation on principles.

• The suggestion that signposting links should direct users to the relevant page of external websites, rather than the default homepage.
• Add captions to photos
• Move the section on the Advisory Group from ‘our work’ to ‘about us’
• Add an explanation about pelvic mesh to the webpage text introducing the resource
• Rachel will commission blogs from all members to include their voices on the website (Action).
• Part of the development plan will consider the naming of sections, and sub-sections (e.g ‘Resources – innovations’).
• There was a discussion around not promoting or endorsing initiatives/innovation (e.g that have a commercial element).
• Positive comments were received on the visual approach and identity.
• A continuous programme of user testing and having relevant, fresh and reliable content would be important.

• The Group discussed the scope of the Commissioner’s role, and it was acknowledged that many other issues had already been brought to the Commissioner’s attention outside the scope of First Do No Harm.

 Role of the Advisory Group

• There was agreement that the wording in the terms of reference facilitated the statutory requirement of the group to advise and assist.
• There was a suggestion that temporary sub-groups possibly focussing on research and communications could be considered.
• The Group’s membership, biographies, terms of reference, meeting notes and other documentation will be published on the website (once live) to ensure openness and transparency.
• Offers of help were received from the Patients Association and National Voices to host on their website and include updates in their communications.

• Work to avoid sodium valproate being dispensed in white boxes, including raising concerns to the General Pharmaceutical Council who then wrote to all community pharmacists.  Engaging with NHS England and keeping visible the pressing need for this to be resolved, including raising delays with the white box consultation with the responsible DHSC Minister.
• Redress – the Commissioner had been asked by Minister Caulfield to look at redress for those harmed by pelvic mesh and sodium valproate, and since December there had been a process of negotiation with DHSC to agree the precise scope of the work to ensure that it is patient focussed, and to secure additional resource, including expertise in the area of redress. The work would start once resource was in place.

• Campaigning to improve the use of yellow card reporting, including design of the patient information leaflet and packaging, and raising awareness.
• Seeking to understand how organisations listen to patient voices, for example with a patient director at board level and through having patient stories at the top of their meeting agendas.
• Working with NHS England to ensure patients are aware they have a choice of specialist mesh removal centres.
• Helping the NHS England team leading on the registries work to have input from patients by connecting them with patient groups.
• Co-producing resources for patients and GPs on pelvic mesh complications.
• Working with health leaders to ensure that all relevant patients are on a Pregnancy Prevention Plan (PPP) and given the necessary information.

• Consultation on principles of better patient safety
• Publication of a business plan, currently with DHSC
• Annual report (to be laid in Parliament – before summer recess)

• The benefit of learning from other countries and systems, including fragile, vulnerable and conflict states, and recognising that within our own systems and services there are vulnerabilities – where can we make the most impact in these areas. How can we best learn across our own system and elsewhere.
• Engaging with integrated care system leaders would be beneficial to learn about good practice.