Transvaginal Mesh Case Record Review

Chapter 9 - Acknowledging the Past and Looking to the Future

Introduction

9.1 A lot of work has been undertaken narrating the lives and experiences of women who have experienced complications following transvaginal mesh surgery. By its nature, this has tended to take a retrospective approach, reflecting on mostly what has occurred for some women following their transvaginal mesh surgery and to a lesser extent why this has occurred. Our Review has, to some extent, followed the same retrospective path. In the two years that I corresponded with the participants, it was striking how willing they were to get involved, not only in sharing their own experiences, but forwarding online links and all sorts of information that they thought would be of value to the Report. I felt their frustration at not being able to have a more proactive role in redressing past events in order to have influence in how future care and support is provided.

9.2 This chapter looks to the future and reflects on ways to improve the management of women’s care, recognising the legacy of treatment and the impact that this has had on women’s faith and trust in their healthcare. The future role of the complex mesh surgical services in Scotland and how it integrates with local services will also be addressed. The importance of data capture is recognised. Not only is this an essential requirement to inform the allocation and provision of resources but to ensure that aftercare and follow up is available for those who have received treatment, both within and outwith Scotland. Pathways for treatment and referral need to be clearly articulated and publicly available.

Complex Mesh Surgical Service Provision

9.3 The establishment of complex mesh service provision can be seen as an example of an established model which aims to draw together specialist services, ideally relating to the care, treatment and support for a particular complex condition. Good models for such centres of excellence can be seen in other areas such as oncology, reproductive and maternity services. Creating the opportunity to draw resources together in one place can offer a more aligned and comprehensive service in relation to a particular speciality, in this case, complex mesh service provision.

9.4 As discussed in Chapter 7, by the time a woman arrives at a specialist centre it is often the culmination of a long and complex journey of surgeries, referrals and investigations.

9.5 To be referred to a mesh centre is, for many women, the end goal of what is likely to have been a long clinical journey. Recognition that there have been adverse consequences for them, usually of a complex nature, is an important part of this journey, as it provides reassurance that they have arrived at a place where complexities can be addressed.

9.6 There is one Complex Mesh Surgical Service (CMSS) in Scotland, this is in addition to nine centres providing complex mesh services in England. The CMSS is currently based in Glasgow and overseen by Greater Glasgow and Clyde Health Board. It took over from the service that was previously provided jointly by NHS Lothian and NHS Greater Glasgow and Clyde Health Boards, and became available on an incremental basis as a service for women from August 2020.^[260] There are some assumptions made that such centres were the result of the recommendations contained in the Cumberlege Report.^[261] This is not accurate. The CMSS was already evolving in Scotland prior to this.

9.7 The Cumberlege Report referred to this aspect of clinical care as establishing a ‘one stop shop’^[262] to signpost and refer patients to other services. The benefits of a multi-disciplinary approach housed in one location were also recognised in Scotland in the Health and Social Care Alliance report in January 2021.^[263] The Panel find the term ‘one stop shop’ problematic for it does not accurately describe the current function of the CMSS. Use of this terminology also creates unrealistic expectations as to what services are currently offered within the CMSS. It also appears to us, to be a little discourteous to both patients and healthcare providers but critically, it may give the impression that all services are located and provided within a central specialised service. This is not the case. The CMSS is a surgical service - as is reflected in its title - and whilst, there are specialist nurses, physiotherapy and emotional support services, they are centred around preparation for, providing and recovery from, a surgical procedure.^[264] Broader availability of services may, and does, rely upon local service provision and the CMSS itself relies upon a patient referral system from local services. The referral pathway requires patients to arrive at the CMSS with all the information gathered in advance by their local health board, ready to be assessed at the CMSS where their eligibility for mesh revision surgery will be discussed. For this reason, we prefer the term ‘integrated services’ to ‘one-stop-shop’. By this we mean a collaborative relationship between the CMSS, the local health boards and other agencies, including patient groups.

9.8 Whilst established,^[265] the operation of the referral system appears to us, to be confusing and may benefit from further explanation so that it is clear where the responsibility for patient care may lie at any given point and what might be expected from their care journey.

9.9 Across the UK, the centres were the subject of criticism from early on in their inception^{[266] [267]} with continuing concerns highlighted both within the media and elsewhere.^{[268] [269] [270]} The Panel recognise that these centres are in relatively early stages of development. When reviewing its outcomes and key indicators of measurement on its performance to date, the impact that Covid-19 has had on the CMSS remains significant and was particularly so for a centre in its relative infancy. The CMSS was unable to provide any surgery between January 2022 and August 2022 and from 22^nd December 2022 until February 9^th 2023, due to Greater Glasgow and Clyde Health Board-wide elective procedure restrictions related to Covid restrictions, and the significant winter pressures.^[271]

9.10 Our focus considers the current service provision of the CMSS and its role within future care. Our focus rests therefore primarily with the Scottish service but we recognise how important it is for the services across the UK to share best practice, including a consistent approach to data capture.

9.11 Prior to arriving at a mesh centre, participants described to us a clinical journey which for many, involved treatments from multiple clinicians, within multiple hospitals, across multiple Boards or Trusts. These could be nationally within Scotland, or further across the UK. In the last two years a number of women have also travelled out with the UK for mesh revision surgery. Unsurprisingly, this has resulted in a legacy of fragmented care and confused communication - both written and verbal. Attending a complex mesh surgical service provides some opportunity to address that legacy through the re-building of relationships and re-establishment of trust.

9.12 Whilst we recognise that a necessary focus has been on the provision of mesh revision surgery, the women who will require, or are suitable for this type of surgery will be small in number. Arriving at the decision that surgery may not be the best option will be highly distressing for some women. There should be a clear process available to support, practically and emotionally, the women who may not be a suitable candidate for surgery, or who decide that this is not the optimal choice for them.^[272] Looking forward, it is hoped that the importance of the integrated provision of services will be clearly recognised for women for whom surgery may not be a possible or preferred option, and that non-surgical options will also be readily available and equally supported.

Webpage /Website - Complex Mesh Surgical Service in Scotland

9.13 A positive step was the launch of a webpage for the CMSS in Scotland in late December 2022, which is hosted through NHS National Services Scotland (NSS).^[273] In December 2022, it contained a description of its of its origins and purpose. Confusingly its contents were updated on May 31 2023 and this changed the page significantly:

‘The Complex Mesh Surgical Service hosted by NHS Greater Glasgow and Clyde (GG&C) is the nationally designated centre in Scotland for women with mesh complications…’^[274]

9.14 A statement on the webpage also pledged to work to incorporate the findings and recommendations from the Health and Social Care Alliance Report.^[275] 152 women who had experienced mesh complications following their surgery participated and engaged with The Alliance to share their views. The views had much in common with those that had been highlighted in the Cumberlege Report^[276] the previous year.

‘Trust;

The importance of being listened to;

A joined-up approach between the mesh service and local NHS Boards;

A holistic approach recognising that mesh complications are life changing;

A clear pathway of care.’^[277]

9.15 These form the essence of recurring concerns and it is positive to see that the CMSS has pledged to work in partnership to ensure swift implementation of recommendations which may serve to address these.

9.16 The webpage is a welcome online presence and it is hoped that this site can be further developed to include details of the complex mesh surgical service’s work as it develops, along with intimation and inclusion of publications, testimonials and future projects.

9.17 The webpage also notes that ‘The service is for women who have been referred for specialist surgical mesh removal.’^[278] The CMSS is clear that it is not providing a more comprehensive or integrated service; its focus is only upon mesh revision surgery.

9.18 At the time of writing, there is also a separate website offered through Greater Glasgow and Clyde.^[279] Unfortunately, this is difficult to locate and lacks visibility when using online search engines. The Panel were unaware of its existence until a link was forwarded to us from the CMSS in May 2023. It is difficult to distinguish between the NHSGGC webpage^[280] and the Greater Glasgow and Clyde Health Board website.^[281] The webpage and the website contain different information. There is no link contained in either to refer from one to the other. Both contain valuable and informative content.

9.19 Online resources are an excellent way of enhancing communication. It is important that information relating to the clinic’s services, processes and the patient experience are accessible and transparent to patients and the public. This will better inform patients and engage them with the service. However, the Panel recognise that it requires dedicated time and resource to maintain the accuracy and quality of websites and that there is currently the potential for duplication.

9.20 Updates and information regarding services, pathways, patient feedback, research and education must not be underestimated. Resources should be consolidated into a single website. This website should clearly outline where responsibility lies for patient care at each stage through both referral and treatment pathways. A good example can be found on The New Zealand Female Pelvic Mesh Service website.^[282]

9.21 Work should be undertaken to make this information more accessible, consistent and better integrated across the NHSGGC and the CMSS.

9.22 The Panel believe that all information should be drawn together into a single website. This website should be clear about where the responsibility lies for patient care at each stage through the referral pathway.

9.23 The Panel recommend that dedicated funding should be made available so that work may be undertaken to make this website accessible, connected and regularly updated and maintained with up-to-date information.

Clinical care pathway

9.24 A good starting point is the creation of a clear and structured care pathway from the moment the patient arrives at a specialist mesh centre. The importance of rebuilding trust cannot be overstated and patients need to have a step-by-step explanation as to what to expect, including a discussion of the possible options available to them. This may or may not include a surgical option but the choice remains the patients. Honesty, transparency and clarity is essential if the reality of their circumstances is not what they had hoped it would be.

9.25 Many women have spoken about a lack of what is often termed a ‘pathway’ of care. Pathways are usually devised on a combination of two elements: one element is to assist clinicians in terms of best practice in how to move a patient from one part of the healthcare system to another, and one element to facilitate multidisciplinary working. It is a combination of the two elements that makes it a resource-efficient way for the healthcare service to provide high quality care in an equitable way it is not a rigid system and can and should be subject to revision as best practice evolves.

9.26 As noted above, the CMSS established a webpage in December 2022 ^[283] where it is explained that they are working in partnership with NHS GG&C Health Board colleagues to provide treatment (care) pathways and national referral pathways which will also cover follow up arrangements after discharge from the centre.^[284] The Panel interpret this to mean that, as yet, there is no treatment pathway, but this this is currently being addressed. On their website there is documentation describing a pathway for referral.^[285] We have indicated above that this could be made clearer to indicate where the responsibility for care lies, for example, with a local service or the specialist mesh service. We remain unclear whether a pathway for care and treatment has been developed for the CMSS, and this urgently needs clarified.

9.27 The Panel recommends that information around referral and treatment pathways and clarified and published on the website. This needs to be specific to the processes of the CMSS and designed from the patient perspective. Where responsibility lies at each stage should be identified and signposted effectively. This should be regularly updated and maintained.

Pathway for training and credentialing of surgeons providing complex mesh surgery

9.28 The Cumberlege Report recognised that consideration should be given to credentialing surgeons for complex mesh surgery^[286] and the Panel fully agree.

9.29 It is recognised that all surgeons providing complex surgery for urinary incontinence and vaginal and uterine prolapse must be members of the appropriate subspecialist society, and all urogynaecologists must have British Society of Urogynaecology (BSUG) membership. All urologists forming part of the specialist multi-disciplinary team must have membership of the Female, Neurological and Urodynamic Urology section of the British Association of Urological Surgeons.

9.30 The Royal College of Obstetricians and Gynaecologists((RCOG), in collaboration with partners, including the Royal College of Surgeons, have developed a Mesh Complications Management Training Pathway.^[287] Their background paper observes,

“The specialised commissioning process [for units to apply to establish as complex mesh surgical services] states that there is a requirement for training for Mesh Complications: ‘Individual Trusts providing Mesh Services must use the Trust appraisal system to ensure surgeons are appropriately trained and current in their practice; adhere to clinical guidance; comply with national data requirements and report complications”.^[288]

9.31 We observed that patients with personal experience of mesh complications also provided input to the development of this pathway.

9.32 The pathway curriculum consists of four 4 'capabilities to practice' and these are outlined below:

• The doctor has the knowledge, skills and attitudes required for clinical assessment of patients presenting with suspected mesh-implant complications;
• the doctor is able to investigate mesh complications, and interpret the results of tests, appropriately;
• the doctor is competent in non-surgical management of mesh complications; and
• the doctor is competent to undertake mesh removal surgery as part of a multidisciplinary team. ^[289]

9.33 The Panel notes that the matter of credentialing appears to have been approached and approved in Scotland. It was raised in the Scottish Government’s Transvaginal Short Life Working Group. The minutes from December 2020 record:

• “Colleagues from the Royal Colleges and specialist associations have been in contact with the GMC about establishing a GMC regulated and accredited credential for mesh removal surgery.
• “The credential will define what skills clinicians need to develop, how the skills will be measured, and how we can benchmark the acquisition of the skills. The accreditation will be registered in the GMC register of specialists, indicating that surgeons are credentialed to undertake mesh surgery.
• “The aim is that this will recognise the skills of our surgeons, it will provide support for the Service and it will increase public confidence. There was consensus that credentialing is a positive development to move forward and build trust. The length of time that the credential may take to come in to force was raised in discussion.”’^[290]

9.34 As discussed throughout this Report, there has to be trust and faith from those using any service which provides mesh revision surgery. Training and credentialing of surgeons therefore is a critical element and its process has to be clearly articulated, not only for clinicians but also for women using the service.

9.35 The process of training and credentialing of surgeons in Scotland is a critical element and its process has to be clearly articulated, and made available, not only for clinicians, but also for women using the service.

Attending an appointment

9.36 This section reflects on appointment attendance at any venue, and does not relate exclusively to the CMSS. Chapter 8 described in detail the importance of good communication and disclosure of information to enable an informed choice being made by the patient. The Panel recognise the current tension between the need to ensure a robust process of information disclosure and informed consent, and the current constraints in appointments within an already-stretched National Health Service. The provision of good patient decision aids, graphics and time to reflect upon them can only achieve so much. What matters most is the opportunity for patients to ask questions, have their concerns heard, and fully understand the potential benefits and risks of treatment.

9.37 Factors that could enhance the retention of information shared are also important to consider, such as a written summary of the discussion copied to the patient, the option of recording a consultation for the patient’s own record, encouraging the patient to attend with a trusted person.

9.38 The General Medical Council’s guidance on shared decision making and consent provides that:

‘To help patients understand and retain relevant information you should:

• share it in a place and at a time when they are most likely to understand and retain it. Anticipate whether they are likely to find any of it distressing and, if so, be considerate when sharing it;
• accommodate a patient’s wishes if they would like to record the discussion and if they would like anyone else – a relative, partner, friend, carer or advocate – to be involved in discussions;
• share it in a format they prefer - written, audio, translated, pictures or other media and give them time and opportunity to consider it before and after making their decision.’^[291]

9.39 We have already addressed the final bullet point in terms of the format of decision-making aids and the use of diagrams and digital media.^[292] Our conversations with the participants highlighted a recurring concern about feeling uncomfortable, or being challenged, when they asked if they could record a meeting, often to be met with a non-favourable response. This then either resulted in them leaving an appointment unsure about the information they were given and what it meant for them, or they recorded the conversation surreptitiously. Neither of these outcomes are ideal and are contrary to the spirit of shared decision making and enhanced communication between the patient and their healthcare provider. As can be seen above the General Medical Council guidelines state that if the patient wishes to record the conservation then this should be accommodated.^[293] Ideally this should be done with mutual agreement of the clinician and the patient, and clinicians should be supported and enabled to make this possible.

9.40 Section 27 of the GMC guidelines also encourages the presence of carers, advocates or support should be patient wish it. The CMSS advise that they ask patients if they would like to record the conversation and are encouraged to do so. The Panel supports this.

9.41 The Panel believes that patients should be clearly informed of the options available during their appointment prior to attending the CMSS, for example, to be accompanied by a trusted person and to record discussions that take place during the appointment. Such options will help to enable the patient to retain and reflect on the information and treatment options discussed. It is recommended that this information is included on the single website.

Data capture

9.42 As highlighted throughout this Report, data capture plays an essential role in understanding workload and health outcomes, and influences the future allocation of resources, and development of care pathways. A report by Healthcare Improvement Scotland (HIS) published in 2020^{[294] [295]} acknowledges the benefit of data capture but also acknowledges the difficulties in capturing and obtaining accurate data. In this context, the difficulty in data capture was in part attributed to the complexity of the codes used to record mesh surgery.^[296] NHS Scotland Information Services suggest that between April 2009 and March 2019, 8384 mesh procedures for Stress Urinary Incontinence (SUI) and 1519 mesh procedures for Pelvic Organ Prolapse (POP) were undertaken in Scotland.^{[297] [298]}

9.43 The actual number of mesh revision surgeries that have taken place across the world remains unknown. This is an issue not confined to Scotland. As noted above, some of this can be explained because of the complexity of codes used to record procedures.^[299] This has been highlighted as an issue for a number of years. Notably it was also highlighted in the Cumberlege Report in 2020, and in Scotland, two years later, a Scottish Parliament Briefing (SPICe) paper concluded that ‘the number of women suffering complications is not known, because there is currently no reliable information’.^[300]

9.44 The Health Improvement Scotland paper on data capture proposed to:

• Undertake work to ensure a consistent approach to coding. One possible solution is to limit the number of codes available for each procedure.
• Continue to monitor data on the number of mesh and non-mesh procedures for SUI and POP, and the number of readmissions and removals relating to these procedures.
• Seek confirmation from the relevant NHS boards, where records indicate a transvaginal mesh procedure has been used.
• Identify the number of women being treated for these conditions through alternative methods, and how relatively effective these methods are.
• Include the following areas of data collection in any review of the data:
• Primary care data (e.g. volume of consultations relating to SUI and POP; insertion of pessaries or other treatments).
• Non-surgical procedures for SUI and POP.^[301]

9.45 The lack of consensus regarding data accuracy, or any clear plan to improve data capture is of concern.

Data capture from surgery provided out with Scotland

9.46 On the 12 July 2021, the Scottish Government announced that patients were to be given the option to consult with private surgeons outwith Scotland, and to receive mesh revision surgery, with contracts awarded to Spire Health Care in Bristol, and the Mercy Hospital in Missouri, America.^[302] From our conversation with the participants and review of their case records, the Panel understand that mesh revision surgery carried out by these independent service providers, may also be accompanied by other forms of surgical procedure.

9.47 The Panel believe that it is crucial that there is an agreed system of NHS follow-up and ongoing support in place for patients who are returning from a mesh revision surgery which has taken place outside Scotland and that this data is captured, collated and forms part of a comprehensive evaluation mechanism.

Reporting of ‘adverse events’

9.48 The reporting mechanism for adverse events appears similarly unclear, with several issues identified by HIS, including

“incomplete reporting, difficulties identifying details of the original implant, and possible duplication of reporting to Incident Reporting and Investigation Centre (IRIC) and Medicines Health Regulatory Authority”.^[303]

9.49 There appears to be some progress in this area with a national system in place since 2019^[304] that requires Health Boards to report significant adverse events. The aim is to make sure that there is consistency of process and quality in the data submitted. This system went live in January 2020 with monthly data being received from all organisations.^[305]

Data collection and follow up

9.50 Retrospective data collection remains challenging, but essential to be able to resource and understand what is required in terms of the nature and volume of future care and support. The potential for all complex specialist mesh centres across the UK to collaborate in collecting outcome data for their collective caseloads in relation to treatments received, is significant. This data will not only inform the development of future clinical care, but could also be used for educational purposes and to inform where further research is needed.

How is success defined: evaluating success from patient or clinician perceptive?

9.51 A final point in this chapter sees the Panel return to the need for clarity of language and how we view this as fundamental when discussing whether or not the outcome of a revision surgery was deemed ‘successful’. The interpretation of this will depend on the perspective taken and it can mean several and different things to the treating healthcare team or to the patient. To add to the complexity of how success is defined and perceived by patients, it will also be influenced by the views of their friends and family, support groups, public organisations and the media. It remains significant because how success is understood and defined will influence the accuracy of data capture too, in terms of health outcomes.

9.52 For our purposes, we confined our consideration of success on how either a patient or a healthcare professional would interpret it. For the women who had one or more mesh revision surgeries, culminating in a complete removal of their mesh, all spoke of the psychological relief brought about from the removal of a ‘foreign body’. This may be viewed as ‘success’ from their perspective, regardless of whether or not it resulted in an improvement in urinary symptoms, pain or mobility.^[306] If the patient regards a treatment or procedure as successful, this alone will often have a positive impact on the relationship between the patient and their clinician and, in turn promote a willingness to trust advice given on future treatment and care.

9.53 The Panel recommends the implementation of the Health Improvement Scotland Guidelines on data capture to also include national learning from significant adverse events.

9.54 The requirement for all CMSSs across the UK to collaborate on agreed consistent data gathering, including on longer term outcomes from treatment

9.55 Agreement on how 'success' should be defined and measured, from both a clinician and patient perspective.

9.56 The Panel are aware that the Health, Social Care and Sport Committee of the Scottish Parliament committed to review the service and support provided by the Scottish Complex Mesh Surgical Service (CMSS). The Committee launched a consultation which closed on 24^th March 2023^[307] and a summary of their evidence is now available.^[308] The Panel recognise that many of the matters raised with us throughout this Case Record Review, also appear in the consultation evidence, suggesting that many of these issues may remain unresolved. However, the Panel observe that the CMSS has undertaken its own surveys regarding patient experience and implemented a subsequent action plan and should be considered in any evaluation. ^[309]

Participants Evaluation and Feedback

9.57 We were keen to seek feedback from the women on their experience of participating in the Case Record Review. To this end, we designed a simple feedback form that contained eight ranked questions, relating specifically to the women’s experience of meeting with the moderator and administrator, plus two additional questions that allowed for individual feedback on their experience of the Case Record Review more generally. The form used can be seen in Appendix 1. The ranked questions 1-8 were adapted, with permission, from the Care and Relational Empathy (CARE)^[310] person-centred process measure, that was designed and researched in Scotland. It was originally designed to measure empathy in the context of the therapeutic relationship during a one-on-one consultation between a clinician and a patient. Originally developed and rigorously tested for use by GPs, it has since been successfully used by other medical staff, allied health professionals (AHPs) and nurses.

9.58 All of the women (18 in total) who participated in the Case Record Review were invited to complete the feedback questionnaire. We received nine completed feedback forms, a response rate of 50%. The replies were anonymised and shared in confidence with one of the Panel clinicians to collate and analyse. The rationale for this approach was to allow an independent analysis of the feedback that related largely to the meeting with the moderator (and author of the report).

Specific feedback on the women’s meetings with the Moderator

9.59 This part of the feedback relates to questions 1-8, with options to rank as ‘Poor’, ‘Fair’, ‘Good’, ‘Very Good’ or ‘Excellent’. The results are summarised below.

9.60 At your first meeting, how good was the Moderator at:

Q1 Making you feel at ease (introducing herself, explaining her position, being friendly and warm towards you, treating you with respect; not cold or abrupt)

Of the 9 responses received: 8 chose ‘excellent’ (89%); 1 chose ‘very good’ (11%).

Q2 Letting you tell your “story” (giving you time to fully describe your condition in your own words; not interrupting, rushing or diverting you)

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘very good’ (11%).

Q.3 Really listening (paying close attention to what you were saying)

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘fair’ (11%).

Q.4 Being interested in you as a whole person (asking/knowing relevant details about your life, your situation; not treating you as “just a number”)

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘very good’ (11%).

Q.5 Fully understanding your concerns (communicating that he/she had accurately understood your concerns and anxieties; not overlooking or dismissing anything

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘poor’ (11%).

Q6 Showing care and compassion (seeming genuinely concerned, connecting with you on a human level; not being indifferent or “detached”)

Of the 9 responses received: 9 replied as ‘excellent’ (100%).

Q.7 Being positive (having a positive approach and a positive attitude; being honest but not negative about your problems)

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘fair’ (11%).

Q8 Explaining things clearly (fully answering your questions; explaining clearly, giving you adequate information; not being vague)

Of the 9 responses received: 8 replied as ‘excellent’ (89%); 1 chose ‘poor’ (11%).

9.61 Of note, all the more negative responses were from the same participant.

More general feedback on the Case Record Review Process

9.62 Two additional free text questions were also asked to try and ascertain how useful the women had found the process as a whole:

Q.9 What have you found most valuable about this process?

Q.10 What do you think could be improved about this process?

Themes identified around perceived value of the process (Q9)

9.63 The most commonly reported theme was of feeling “listened to”. Related themes were feeling “understood”, feeling “heard”, “not being dismissed” being “encouraged to ask questions and share my concerns and expectations”, being “treated with dignity and respect”, and having the opportunity to “share my experience”. Women reported experiencing the Moderator as “available”, “interested”, “compassionate” and “not paying lip service”.

9.64 One woman reported a sense of closure and being able to “move forward with my life”. Two women reported finding it helpful to have answers to specific questions that she had for the Panel about her mesh removal, and one reported finding it useful to have “some things [she] suspected confirmed”.

9.65 One woman said that she was grateful that the Panel had specifically written in her report of the recognition of the physical and emotional challenges that the women had experienced. Another reflected that “the Panel left no stone unturned when they reviewed my case notes” and that the “integrity” of the Panel has helped her to cope with her report, parts of which were upsetting for her to read. One woman reflected on her follow-up meeting with the moderator and one of the clinicians from the Panel, after receiving her report as “clarif[ying] things further, which I appreciated”.

9.66 One woman commented on finding the objectivity of the Panel useful in the review of her case records, “having someone not directly involved in my care casting an eye over what has been written in my notes”.

Themes identified around suggestions for improvement of the process (Q10)

9.67 Whilst one woman felt no improvements could be made, with the “process work[ing] well and effectively”, the majority of women offered suggestions for how it could be improved.

9.68 Particularly negative feedback about the process was received from one woman: she felt that being involved in the Case Record Review had further eroded her trust in the medical profession (and others), and found the process of re-living her mesh journey re-traumatising.

9.69 The most common theme expressed by the women was frustration at the length of time the process had taken from invitation to be involved, to receipt of their final report.

9.70 One woman reflected on how she had felt “exposed” after her full medical records were requested from birth, and reflected that in retrospect a targeted more relevant selection of her case records would have been adequate to undertake this work.

9.71 Three women specifically mentioned the challenges of having to have the meetings online via the ‘Zoom’ platform during the Covid19 pandemic, and one expressed concern for how computer-literacy might have impacted on confidence or engagement with the process. This was in direct contrast to it being “absolutely amazing to have the last meeting face to face”.

9.72 Some women expressed disappointment at the content of their final report, whilst acknowledging that it could only contain the “black and white” information available to the Panel to review. One woman suggested that a separate section within the report may have been helpful, that contained their account of the information that had been shared verbally, but was not mentioned in their case records, as “this is our truth”.

9.73 One woman expressed a desire to know “what, if anything, has changed as an outcome of this review?”. Another expressed a hope that the knowledge and understanding gained by the moderator during the process would be “put to good use”, offering specific suggestions to support women through “informal patient support/help group, podcasts, holistic therapies, PIP [benefit] advice, dietary advice.”