An MP’s Guide to Responding to a Constituent Affected by Valproate
Having been a constituent of Keir Starmer’s for many years, on and off, I’ve been curious about his approach to justice. As a lawyer he seems to want to depend on existing laws to keep justice in check - but he must understand fully that when it comes to long drawn out cases involving many individuals, the system as it stands does not serve the people that need justice the most. On the contrary, we become the ‘crumple zone’ or collateral damage of systemic failure, which at best nudges safety policies in the right direction and at worst kills people and leaves whole families lives disrupted and their futures altered beyond recognition.
He took my case on in 2015 when I moved back into his constituency to look after my mother. There was very little said and very little done - this was common to all MPs, just the way it is. We got the most done when we protested outside MHRA offices, but that's another story, needless to say we'd be arrested now and classed as rioters. Although he’s supported Baroness Cumberlege’s appeal for redress for our victims, and has expressed support to fund cases against the State, and support the Hillsborough Law, I sense that he has a problem with issues that aren’t black and white. In prison/out of prison. With Israel/without israel. Rioters/protesters.
Sadly our systemic problems are not black-and-white and even Public Inquiries and policy change don’t have any effect on past cases - they’ll look at the history, but they won’t compensate. They simply churn around and around while those in power pass the buck and although each party in the quagmire may adapt their policy, it’s done grudgingly and finally when complete they show endless self appreciation for the worthy work they’ve done out of the goodness of their own hearts.
When my members write to their MPs about valproate, they’re usually met with a predictable reply.
A paragraph expressing sympathy - not helful as our kids have their own future not a tragedy and something to be ashamed of.
A paragraph expressing all the wonderful things that have changed and if the letter is to a campaigner, great thanks at all the wonderful things we’ve done - um we are only here because we need to be, we aren’t martyrs, we are angry and complaining and want the government or someone to put their big girl pants on and take responsibility for the harm done to us.
A paragraph offering a request to a minister - when has this ever gotten us anywhere? When the letter comes back it’s a brief summary of the above again, with no real interest in making any changes.
Then there was usually an excuse, pick from the following:
Back in the 80s the excuse was ‘no evidence’ and this went on and on.
Then the excuse was ‘seek legal redress through the courts’ against one of the biggest global companies? Right.
The most recent, just before the GE was ‘if we compensate you then that would be taking away from the NHS.
Somewhere in between the response was ‘you’d need to show that your child’s needs are greater than any other person with similar disabiilities.
Another was ‘it was there on the patient information leaflet, your doctor should have told you, please complain to them.
And next the support of the endless reviews that we should be grateful for despite having put our lives into the work of these reviews for the many years they’ve dragged on for.
1. IMMDS Review (Cumberlege) - historical analysis with full patient engagement and look at ways forward - but without access to the documents that are locked down in Kew for 100 years (seriously)
2. Patient Safety Commissioner - I got to meet her once, she’s a very busy woman with a massive remit and a small department
3. Hughes Report - a great analysis on the status quo regarding health policy with some references to philosophical theory, principles that dig deeply - but also on compensation (a pick ‘n’ mix of offers drafted indirectly by a pharma lobby) - however a
4. Consultations in Scotland - great, i see them as healthy competition and they move fast
5. MHRA and medical associations doing their prescribingh policy changes, with many funded PR people sitting around the table with unfunded victims, who work for free.
6. A PSC consultation on developing patient safety principles - I’ve heard we have these already but sure I’m ready to participate.
No doubt this pattern of what I can only call GCSE level PR will be familiar to those affected by Primodos, Infected Blood, Grenfell, Hillsborough, many of the hospital disasters.
Let’s pull our socks up, or our big girl pants and face this head on - focus on the past although without looking at the past we can’t fix things in order to change the future, for victims, the present needs to be addressed in the present. More recently we’ve heard back street rumours that there’s a lot ‘going on behind the scenes’. Once again, everything about us without us. That approach simply leads to more disasters, as we know the history and they do not.
Comments