With the waiting over by those who have been campaigning around the use of pelvic mesh the publication of the findings and recommendations by the ‘First Do No Harm’ inquiry throws a light onto the medical devices and medicines industry and the use of.
The report is an in depth look and covers needs, stories of and a need for a data base of those effected by and tracking of. The report focuses on those who have been looking for answers, calling to be listened to and the harmful effects, conditions caused by Primodos, sodium valproate and pelvic mesh. A welcome publication with weight to push for change in the workings, thinking of the medical profession regards patients.  The Independent Medicines and Medical Devices Safety Review, chaired by Baroness Julia Cumberlege gives serious recommendations for those effected by as mentioned to be recorded from beginnings of use. A call for a joined direction across sectors, as a quote from the report ‘states;  “the policymakers – is disjointed, siloed, unresponsive and defensive. It does not adequately recognise that patients are its raison d’etre. It has failed to listen to their concerns and when, belatedly, it has decided to act it has too often moved glacially. Indeed, over these two years we have found ourselves in the position of recommending, encouraging and urging the system to take action that should have been taken long ago”. This is followed by the criticism that the system is not good at spotting trends in practice and outcomes that give rise to safety concerns. The appointment of an independent Patient Safety Commissioner is called for, a patients port of call and advocate is stated in the inquires recommendations.
I with my mother Barbara Wheeler did attend one of the meetings called for by the inquiry and heard first hand in the case of pelvic mesh the stories by those it had caused harm to and in some cases devastated their lives. We attended to put the case forward regards the death of my father, Roy Wheeler. With the room round table discussions attended by women putting their stories to the inquiry my mother and I opted to tell our story in a private setting. My father’s death if mentioned we felt would bring a different dynamic to those in the room telling their stories and distract from those stories. An inquiry for the living to put it bluntly was the framework. Of course my father’s death is very much related to those effected by the use of mesh.
This report makes many recommendations on the collection of data across the system, an electronic data capture to track patients through a lifetime of medical intervention. Theme ten of the report is titled as ‘Collecting What Matters’ and goes onto mention  “NHS Digital will start the mesh data collection later in 2020”. The collecting of data is paramount in preventing further distress and this inquiry pulls no punches in it’s wishes. This is where we focused our attention that day at the inquiry. We had been through a coroner court inquiry regards my fathers death and this led us to question if the records collected relating to my father’s death would add weight to a hard look at the use of mesh and what can be long term later effects.
Recording if in part regards mesh as contributing factor,verdicts via Coroner Court inquiries I would argue is another data resource that should be included. If mesh mentioned on a death certificate is this accumulated in data and if a pattern appears in cause or in part is this flagged up? I have wrote before of the circumstances surrounding my dad’s death and an expansion of the data base. I was not aware at the time of the ‘Sling The Mesh’ campaign, I came to the women’s issues around mesh via the campaign and hence led me to look at the circumstances around my dad’s death.
This inquiry goes a long way in putting a voice with solution to those effected by the perimeter of this inquiry and shows a listening at last to those who suffered and are still suffering.
My dad was unaware of those also effected by the use of mesh and I wish he did. I know he would have felt some comfort in he was not alone and contributed to the campaign with his thoughts. The record of his death where mesh was a contributing factor has brought my voice to the table. As a representative of he would approve.
Link to report https://immdsreview.org.uk/report.html
Haydn Wheeler
