Source · Select Committees · Health and Social Care Committee
Recommendation 6
6
Accepted
Paragraph: 44
Patient engagement with lived experience stakeholders remains inadequate for care schemes
Conclusion
We are concerned that although the letter from the Department seems to outline various interactions and consultations with stakeholders, and mentions Sling the Mesh by name, this is not the experience of some patients. Patient input is vital in setting up care schemes such as this one. We therefore urge the Department to reflect on the experience of some of the stakeholders with lived experience in this instance, and to consider how to improve engagement with them in the future.
Government Response Summary
The government committed to reviewing mesh centre outcomes and patient experience, and has appointed two patient advocates to the NHS England Specialised Women’s Services Clinical Reference Group. An audit of specialist mesh centres is due to take place in 2023.
Paragraph Reference:
44
Government Response
Accepted
HM Government
Accepted
. In the Government’s December 2022 IMMDS Review update, we committed to work with NHS England to review mesh centre outcomes and patient experience. In March 2023 Minister Caulfield met with some mesh campaigners and NHS England to discuss plans for the audit of specialist mesh centres. The NHS England Specialised Women’s Services Clinical Reference Group will provide governance for the mesh centre audit. Paula Goss (Rectopexy Mesh Victims and Support) and Kath Sansom (Sling the Mesh) agreed to join the Clinical Reference Group as Patient and Public Voice Members to ensure patient voice is considered throughout the audit. The audit is due to take place in 2023. Patient engagement has been a core component of the NHS England commissioning and service implementation activities for Mesh Centres. For example: • To ensure that the specialist centres are supporting women with complications of pelvic mesh as intended, DHSC will work with NHSE to review mesh centre outcomes and patient experience. This audit of mesh centres will start later this year. Government Response: Follow-up on the IMMDS report and the Government’s response 7 • To improve care for women with pelvic floor health issues nationally, NHS England and NHS Improvement established a ‘Pelvic Floor Health Oversight Group’ in August 2019, which drew on both patient and clinical expertise. • The NHS England specialised commissioning team worked with the IMMDS Review team to review and update the service specification against the Review’s interim and final findings. The review of the service specification was carried out with the involvement of patient stakeholders, in September 2020, ahead of the procurement of the mesh centres. This service specification was included in the procurement process for the centres. • In March 2021 the NIHR commissioned a £500,000 research study on ‘Women’s Experiences of Urogynaecological services’, which will inform work to establish a new validated PROM for pelvic floor (mesh and related procedures) and report by June 2023. Recognising the need for rapid progress in this area, the NHS England Registry Team (previously part of NHS Digital) started work in started work on the study in March 2021 with patient groups and clinicians to develop a new unvalidated PROM to develop a new questionnaire which will help women to report how surgery for POP, UI and mesh complications has affected their quality of life , which will be used alongside existing validated PROMs in the interim until a new validated PROM for pelvic floor is developed. • Mesh Centres were asked to mobilise and establish the service in line with the service specification in April 2021. In May 2022, the Women and Children’s Specialised Services National Programme of Care Lead in NHS England held engagement meetings with all 9 Mesh Centres, supported by patient and public voice representatives. The engagement meetings were designed to explore how the new services are progressing, to hear about their experience of delivering care in line with the service specification and to enable an update to be provided to the Department of Health and Social Care outlining progress against the recommendations set by the First Do No Harm report. Findings of the engagement meetings included: Ȥ All of the centres reported that they had in place systems and process for helping patients to navigate pathways and to support their patient experience and journey, with this support provided either directly through specialist nurse teams or through their dedicated Mesh Pathway Coordinator. Ȥ 6 of the 8 Mesh centres either already had or were planning to bring in Patient Forums as part of the Mesh centre development. • All specialised services for women with complications of mesh must meet annually at a Clinical Summit to present data and discuss outcomes. At the inaugural clinical summit held in December 2022 chaired by Dr Terry Okelly [Colorectal Surgeon and Senior Medical Officer NHS Scotland], sessions included reflections on patient experience, lessons for the future and feedback from patients who have been treated by the NHS England Mesh Centres. The Clinical Summit included Sling the Mesh representation and Baroness Julia Cumberlege also attended. 8 Government Response: Follow-up on the IMMDS report and the Government’s response • As a result of the summit, and feedback from the Department of Health and Social Care following meetings with Ministers and the Patient Safety Commissioner, NHS England through the Specialised Women’s Clinical Reference Group [Chaired by Dr Janice Rymer, Prof of Obstetrics and Gynaecology and National Speciality Advisor for Gynaecology and Specialised Women’s Clinical Reference Group], NHS England has put in place arrangements: Ȥ To develop an audit tool and audit programme for Mesh Centres to enable feedback on information about the overall mesh patient experience as well as updates about patient activity and referral patterns data. Ȥ Review the arrangeme