Appendix Three: Recommendations from the Mesh Survivors Group
- Consider postponing all non-urgent highly-complex 'total' mesh removal surgery for women with chronic pain until our surgeons are trained by the US surgeons who are more experienced in this type of surgery, e.g. Dr Veronikis, and obtain high patient satisfaction. We urge government officials to invite this surgeon, or an equally skilled one, to train our surgeons, shorten the learning curve and provide leadership on mesh removal surgery in Scotland.
- Stop partial mesh removal surgery in local units. Women presenting with chronic pain, including pain during sexual intercourse, require total removal of the mesh device. All women presenting with mesh complications must be discussed at national MDT. Total removal surgery must be the default procedure and must be performed only at an expert mesh centre by at least two expert mesh removal surgeons e.g. a gynaecologist and urologist.
- Facilitate second opinion from another unit in the UK or overseas - a reciprocal agreement. Women should not feel compelled to go to a particular mesh centre or particular surgeons, especially if they were the implanting surgeons in the first place and there are trust issues. Empathy and compassion are essential.
- Develop and implement national patient care / treatment pathways for mesh injured women to include the following:
- Focus the resources of physiotherapy and pain clinic interventions to take place after, better than before, total mesh removal surgery. Rehabilitation of the pelvic floor by physiotherapists and addressing any residual pelvic pain by anaesthetists may be useful after the offending device is removed. It is not fair to judge the success of such interventions when the pain-inducing mesh device is still in place.
- Translabial ultrasound should be made available at the national mesh expert centre and the MDT should include a radiologist to help the surgeons decide whether the scan will be useful for individual patients.
- Invite a rheumatologist to be part of the wider MDT. There are many mesh-injured women reporting/experiencing symptoms highly suggestive of autoimmune diseases. Rheumatologists would decide what tests to identify inflammatory markers and whether to compare the results before and after removal surgery.
- Develop and implement a Patient Decision Aid (PDA) that describes all treatment options for mesh-injured women and inform and help women to make the difficult decision of whether or not to undergo surgery, based on what is important for them. The PDA should be agreed and signed by patient and regional MDT.
- Total (rather than partial) mesh removal must be the routine procedure for women who choose surgery. The MDT should justify why a patient would receive a partial rather than a total removal. Partial mesh removal does not resolve pain and it makes future full removal more difficult and almost impossible in some cases.
- Mandate a photograph of the mesh explant, next to a ruler and with the patient name, hospital number and a date stamp. Patients must be given a copy of the photograph.
- Patient follow up review at six months (or earlier if necessary) after presenting with mesh complications in clinic and six monthly checks on their health thereafter, for as long as they still have mesh in their body. Telephone consultation may be appropriate if mutually agreeable.
- Mandate the use of a national database to record the details of the mesh removal surgery, report adverse events to MHRA and audit the outcome in patients' own terms of success and failures. In the interests of transparency, mandate the publication of the results and outcomes of mesh removal surgery on a regular basis.
- Facilitate psychological support for the mesh-injured women, including Counselling and Cognitive Behavioural Therapy (CBT). The traumatic impact of chronic pain and loss of function has been described as similar to Post-Traumatic Stress Disorders (PTSD).
- Raise awareness among social care professionals that pelvic mesh complications can be a direct cause of serious disability and provide adequate and timely social support, during initial assessment and subsequent decisions.