U-turn on Redress for Valproate Victims
The Health Committee discussed redress last week, and conversations are ongoing with the Patient Safety Commissioner. This is really exciting news and I'm grateful to those who have persisted and pushed on our behalf so far, especially after we were outrageously dropped from the government's lofty agenda back in 2021, it's exciting to see these developments. Much as I find government U-turns irritating, this one was a good one, no doubt influenced by the position of Jeremy Hunt as chancellor. We must remember that redress from government is ultimately a matter of finance and without Treasury approval, well-intended policy is just bits of paper and we can't live off bits of paper, although maybe they could heat our homes momentarily.
I don't think anyone would deny that people like us, as victims of Epic Medical Failures, deserve respect and redress for the harm that's been caused, and it's something that most families want. Sure, what I do, and others support, is also aimed at improving the system and perhaps raising awareness, redress for those families is what drives me but it comes in many forms. Generally it means putting a person back in the position that they were before, had the problem not happened. But it's not difficult to find cases of medical negligence that provide millions to families affected by valproate. In this case, December 2022, 12M Euros, the equivalent of over £10 Million was given as a settlement for one child. The case is far from straightforward and involves a range of events, such as failed attempts to contact the patient, even that the patient knew the risks up to 7 years before her son was born. Yet this woman won and rightly so. No woman should have left a neurologist's office with a prescription for valproate without having a very clear understanding of the risks from 1973 onwards with each pregnancy. So this is a fair sum. The provision of redress was one of the two recommendations of the IMMDS Review that was refused. Specifically 'Recommendation 4: Separate schemes should be set up for each intervention – HPTs, valproate and pelvic mesh – to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim.' It was never made clear by the Review exactly what this would entail but the phrase "additional care and support" feels a little abstract, and mean, perhaps. I'd been told something similar by George Freeman MP in 2014 that we needed to show how our circumstances were different to that of other people with similar disabilities. A dead end. Following the publication of the review I drafted a statement (with help from another campaigner with a legal background). I felt that applying to a fund for additional expenses wasn't something our families wanted to do. I had previously devised a questionnaire for families including the question about who they wanted to look after funding for their child (should we ever be lucky enough to get any). I asked whether they wanted to select the people themselves from family members and friends, or have an outside body support them from a larger Trust, and over half of respondents wanted to run those funds themselves. This would give them the dignity and autonomy they felt they deserved and avoid a cap-in-hand system. Parents of disabled children are significantly more likely to get divorced (until they have four children at which point it levels out) and that only 6% of disabled people can find work, this leaves most children affected and their mothers at the mercy of the benefit system and we know how challenging that is - so challenging that people with disabilities have died as a direct cause of it - redress is more than just a nice idea, to most of us it's about survival. I've had discussions about control of funds and was told that there's a fear that families will spend their children's money unwisely. My response to that is that we have a social services and court of protection to prevent financial abuse, which was effectively the accusation. But ultimately that's more paternalism. People generally don't steal their children's money. There are of course logical reasons why group Trusts are established. There's benefit in pooling money together, with higher return on investments, and an ability to rebalance funds to individuals if their health is worse than expected, as happened in both the Contaminated Blood and Thalidomide cases, and it provides an opportunity for those excluded from such a Trust to be able to join if a reason presents itself later on.
These things are fluid and for many that's helpful but for others that can feel unsettling. My feeling is that families deserve a choice. It should be an option, and families who want the safety of such a set-up should be offered an alternative of investing their redress how they see fit. The processes and mechanisms are important here. Many people don't want to have to apply for money, or ask for it. Claiming benefits is hard enough but having to jump through more hoops is not helpful. For many families, however, a specialised group trust can be reassuring and have other advantages and that's a personal choice and both choices should be available to victims of EMFs. In our collaborative submission (Leigh Day, OACS Charity, Facsaware and OACS Ireland) in pp22-247 of the IMMDS Review we laid out clearly some schemes and the issues around compensation (among other things). Leigh Day were able to involve experts in a range of areas. The Review team had their own Socio-legal expert Sonia Macleod who had written a book on redress schemes. These ideas have been fully thought through and I won't begin to explain them here. But I can explain the impact that failures in the justice system have had, and the frustration that's caused by slipping through the net, and the way that it feels to be expected to accept gratefully, what amounts to a cap-in-hand arrangement. One could argue that paternalism and similar toxic relationships, got us here into this Epic Medical Failure and it's important that the solution to that failure - redress - is devoid of that paternalism, and is resolved through a process of enablement and inclusion, providing autonomy and dignity to victims.