Recent discussions about engaging Panorama and Dispatchers and the failed previous attempts discussed on this thread https://www.s4me.info/threads/pitch...-bad-science-pace-etc-and-patient-harm.33997/ has made me want to open a dialogue to hear other peoples thoughts about Class Action Lawsuit/Group Litigation/Inquiry for pwME. At this point, I think any wrongdoings are unlikely to be uncovered safely without such measures. I'm not sure how feasible something like this will be in the case of pwME, but I think of the Haemophilia Contaminated Blood Scandal and the action taken amongst those affected and wonder if similar steps are required.
Ballsy! If a smart lawyer identified a UK high volume “fatigue service” that had persisted with GET after the new NICE guidelines came out, and somehow tracked down patients whose baselines had been worsened as a result, then yeah, why not? I’ve seen longer shots greenlighted by litigation funders. Edit: to the point made by @CRG below, a fatigue service would make an easier legal target if it was part of an acute trust (ideally a large hospital trust).
I think everything needs investigation, if possible, from the decision-making of the 2007 guideline, PACE trials, withholding the trial data, clinical care, the inner workings of fatigue clinics, the new guideline interference and post-patient treatment. None of these things seem to uphold the standard that it should.
We are grouped here on this forum, but many more people are out there confused by their medical treatment. When the new guideline draft was published and subsequently delayed, I contacted NICE directly to inform them I've been treated and accused of having a mental health condition because of the 2007 guideline content. The call handler told me they had received countless calls saying the same and reassured me the new guideline, once published, with, at the most, minor changes, would rectify that. So at a whole organisational level, NICE is aware of the discrimination and suffering pwME face. I'm sure all the calls didn't just come from scientifically informed patients.
I don't understand. Who are the defendants against who a claim is to be made ? NICE is the responsible body for guidelines - what recompensable harm is that NICE is can be sued for ? Pace was the responsibility of its investigators, again what recompensable harm is to be sued for ? The fatigue clinics are the responsibility of NHS managers in four National administrative areas matched to four National Governments, is it the Governments who are to be sued or the respective NHS managements or some combination of these ? And what basis are Governments or the NHS to be sued - maladministration ? negligence ? I'm afraid I can't see such a scatter gun approach having any traction. The Contaminated Blood Scandal has been fifty years in the making - the UK Government and the NHS had unequivocal responsibilities and the science has been clear from the outset, even then over 2500 people have died as result and both patients and their families have been denied support that was promised decades ago. There is no such single line of responsibility in the case of ME/CFS and the science remains problematic, there seems no clear breach of any contractual relationship and complaining that the Government is spending enough on ME/CFS falls into the politics of health funding - any case would likely only have legs where discrimination against ME/CFS patients matched against other patient groups could clearly be shown.
Thanks for your input @CRG. Like I said, I am not sure how feasible any case would be, so your explanation and input from others are useful in understanding what kind of advocacy is practical. I struggle to understand that nothing likely can be done so far and that no one can be held accountable for a BPS takeover based on poor trials at any level.
For a legal route one has to start with an identifiable wrong - the wrong may be contested but there has to be some capacity for the wrong to be describable in a way that is meaningful in common language and which is then translatable into a legal context, not every 'wrong' is capable of being resolved via a court - lawyers use the terms justiciable and non justiciable to distinguish between what a Court can consider and what it can't. It may be understandable to everyone here what is meant by "a BPS takeover based on poor trials" but how would we explain that as a justiciable wrong ? Were contracts broken ? Were there failures of duty of care ? Was there illegality ? Corruption ? Failure to abide by ethical restraints ? Actions outside normal practice ? And from that who has been harmed, how have they been harmed and who specifically is responsible for each instance of harm ?
Just a single case where a person made worse by GET successfully sues the acute trust could change the risk profile of fatigue services such that NICE-uncompliant practitioners would find themselves managed out or, at least, forced to change their ways. A one-off cause celebre legal case would be much faster than a class action job, would still have significant impact, and would offer better scope for homing in on prima facie failures of duty.
It certainly would, but I think its unlikely that could happen with the science as it stands. The issue would be proving that it's GET that made them worse. Post hoc propter hoc isnt legal proof & could easily be argued against in a court scenario.
True, it’s not a slam-dunk. You’d only need to prove to civil rather than criminal standards, though.
True, but given the fluctuating nature and unclear aetiology of ME/CFS i dont think "i did this treatment and then i became bedbound" (for example), would cut it for any standard. Reports of harm were only taken seriously by NICE because there were so many saying the same thing i think. Defence barristers would pick a single person's account in moments. We just have to wait for this stuff, but at some point i think the class action suits will be many and huge. I hope i live to see it
That said, and to your point @JemPD , a failed case and a “post hoc sed non propter hoc” ruling could have significant negative implications for us. I do think, though, that there’s something worthwhile in the idea of advocacy by litigation, and that the best way to go about it is with a one-off rather than trying to litigate everything in a class action. To your post just above, evidence from other patients could be adduced in a one-off if it was germane to the point. I think. Do we have any lawyers here, or just barrack-room ones?
My only relevant experience has been as an expert witness in a weird professional negligence civil case that has been going on for years. If that is typical, we shouldn’t be imaging a poor sod with ME being interrogated by a bewigged bully. Instead, counsel would duke it out via correspondence, deploying reports and counter-reports from their experts as needed, and it would likely end in a negotiated settlement rather than a courtroom.
Ok, at least it's becoming clear Class Action isn't likely to be feasible and perhaps for now individual cases are a better route. I'm sure more people will add to the thread with their knowledge.
If the claim is against the NHS then there's a whole bureaucratised process Advice for claimants* see also Negligence in the NHS: liability costs the NHS pays out over £2 billion a year in claims, most settled without ever getting to Court or public attention. If the NHS itself is not liable but the problems arise from the action of an individual medic then Medical Protection will be the defending body, in some cases both the NHS and MP will be involved. For both the NHS and MP where there is an issue of principle, questions over precedent setting or the compensation claim is especially high, the claim is like to be energetically resisted and the defending organisation will employ a range of resources including surveillance ! Taking on a legal case can be hugely draining even for those who are well and well resourced, there are also large numbers of sharks in the legal world especially in the field of negligence claims, anyone considering going down negligence claim route needs to be really certain about their objectives and about the support they have to hand over potentially a number of years. *Anyone on UK welfare benefits needs to be aware of this provision when taking on the NHS: "Reporting of claims to the Department for Work and Pensions All claims for personal injury are required to be reported to the Compensation Recovery Unit (CRU) at the Department for Works and Pensions. This is so that any compensation you receive takes into account (deducts) any government awarded benefits you have received as a result of the injury you have sustained. This is why your date of birth, address and National Insurance number are required."
Another super informative post @CRG, especially the cautionary points you've raised. Online there are medico-legal services that represent pwME. It could also be a matter of asking charities to find out some information regarding claims to gain an overview of what cases usually entail, with the idea of listing legal resources on their sites like some other charities have done.
If there were a number of patients who had taken part in a BPS study, and who could document that they had reported feeling worse and had instead been told to ignore their symptoms and push through, and who then seriously deteriorated, maybe that might be a core of a case? Especially if the study did not report the harm and there was documentation that the therapists had been told to advise people to downplay symptoms. It might have to be a study undertaken after the NICE guideline came out - has there been any UK ME/CFS BPS study undertaken after that? I started to write something about a case against Cochrane, but the weak disclaimer on the Exercise review probably provides Cochrane with a lot of protection while not stopping the harm. Even as I write these ideas I can see the holes in them. There's been so much harm done, but it's really hard to identify something to litigate.
This topic has been worthwhile even though group litigation doesn't seem likely. The conversation has focused my attention back on the good suggestions currently being discussed in the original Panorama thread.
