Susan Valproate Victims
Hearing Voices, Dr Google
Updated: Jan 3
As often happens, our understanding of the world around us takes place through random searches on the internet, So having mandolined my thumb I'm suffering from a deep wound which needs a trip to the lovely wound care lady. But I've also got COVID so I googled whether I can go to the hospital for this with COVID, didn't seem fair to expose these brilliant people to my nasty affliction. This led me straight to the Patients Association page, with a fabulous many-paged policy document about this precise subject (sadly such documents were never drafted about valproate until far too late). On the PA page was an article from the Patient Safety Commissioner, Henrietta Hughes from November 2022, and I wondered how I could have missed this. Fact is that I miss a lot of stuff, including the absolutely vital-to-our-cause Health Committee on valproate and mesh on issues outstanding.
What Henrietta wrote in her blog was surprisingly similar to what I wrote in my last blog (mainly in its conclusion in that our issue is largely about consent), this was reassuring to see as it's all well and good blaming big pharma, as producers of the gun they're not the shooters. She also discusses the importance of patient engagement (PE) and the patient voice, an issue that you could see as the organisational version of private consent. In the same way that you can only give informed consent by listening to individual patients, you can't design policy that works with patients if they're not heard.
During the Cumberlege Review a fellow campaigner and I presented to the Baroness a patient engagement template, and I presume that work was included in some way in her final report and conclusions of the IMMDS Review (IMMDSR) First Do No Harm (FDNH). Bridgette was immensely helpful and has been for many women's issues as a great informal researcher who doesn't wait until they have time in their schedule but rapidly finds things we need. The fibroid disaster she campaigned for is another Epic Medical Failure (EMF) - there are strong similarities between the mesh EMF and the valproate one. She had the experience of being on several engagement exercises but fundamentally had been or felt she was excluded from a number of platforms and finds it easier to operate outside those systems, but she had a full understanding of how patient engagement doesn't work. Individuals like Bridgette are so important in improving the situation. Often they're outside the limelight because it can damage their careers, or due to the stigma involved in their condition, or they don't like to intrude, but they're strong allies because their support is entirely selfless and for the cause and they have ideas that lead campaigners haven't had time to think about. They're independent. They are Outlying Allies (OAs).
The IMMDSR mantra was Patients and families first (PAFF) and it worked well as an exercise in how to bring the voices of those excluded by the system forward, listening to their experiences. They travelled around the country in order to do this and encouraged Those Affected to locate venues and get involved with organising things. The testimonies in the review are evidence of the amount of listening that happened. Having been trained in parent support work I find it relatively easy to deal with the trauma involved in listening but the stories I heard from women affected by both mesh and valproate are deeply affecting and I have nothing but admiration for the panel, who heard these experiences over and over, without being able to really help in a real way. This method of listening doesn't happen outside of a Public Inquiry as they demand a specific set-up in order to do justice to those being heard. The difference is the level of outreach involved, something that's now improved in the PI system, and was seen in the Grenfell and Contaminated Blood Inquiries.
Part of outreach is bringing in patient voice as a Case Study (CS), but I believe just as important is reaching out to the variety of campaign, patient and support groups (CPSGs), informal groups who gather together a perspective that's valuable. Since around 2010, Facebook groups have sprung up and the collective opinion of these groups is often varied. Sometimes they're a group that doesn't get on with the main group, or just gets on better with another group. Sometimes they will be offered support by law firms, chasing cases, or by politicians with an agenda, or a scientist with funding to find or a point to make and that collaboration is usually beneficial to the group, sometimes they'll influence the direction of progress. Amongst all the campaign groups however, as with any crowd situation, the most forceful voice comes to the fore and in the law of the internet jungle this effect is amplified. So I was disappointed to see at the Health Committee, once again, only two women representatives being heard, representing two groups and the voices of the many other groups have been effectively excluded. Although they've done a lot of work and had most public exposure, both refused to have group discussions despite other groups wanting them to during the IMMDSR. But I can't emphasise enough that the IMMDSR approach to patient engagement was first class and refreshing to see - a wide range of CPSGs gave evidence and the Review Team was open to all. But by allowing some groups exclusive engagement, progress was hindered and that exacerbated harms in these EMFs.
There are many reasons and excuses given by those tasked with engaging the public for not engaging widely enough, the room's too small (RTS), it will open the floodgates (OTF), etc etc. But if we're expecting all doctors to engage in consent we should be ensuring policy makers give all groups an equal voice. This is a matter to be take very seriously as any patient group can very easily get hijacked by someone with an agenda.
Take home point: If you want to avoid an EMF as the IMMDSR exposed and reported in FDNH, a PAFF approach is helpful to provide CSs, but true PE must reach out to all CPSGs and their OAs with equal access in order to be effective. The fear of RTS and OTF elements must take second place to this.