I wish they hadn't put CBT as a treatment for ME in the Guardian article. Rather focus on the disability of ME. Supportive CBT may only help people having problems adjusting to their illness
and want help. Many adjust like anyone else with a chronic illness. This is why ME communities, like this forum, are important to people in so many ways.
Yes, the parents not having a lawyer is a big problem for coroner's courts, Sarah was clearly getting tired, trying to challenge people, to get to the crux of the problem, and the coroner shut her down at times when she became emotional.
No medical consultant took responsibility for her care as an outpatient and it appears none are now taking responsibility for their part in her death. They all pay indemnity insurance to pay for medical defence lawyers, which is their right, but this is not given to the family.
I consider Dr Weir as the lead medical specialist in the UK for ME. He was not listened to or Helen Baxter of the 25% Severe ME group. It is striking the different care in the differing countries, as William Defoe has highlighted, but sadly in the end it comes down to money and the culture of the medical establishment. William Defoe's parents are very well educated on ME and can pay for his treatment (or it is covered by Medicare). I don't know. NZ is a lot more like the UK but we do appear to follow the USA in trialling experimental treatments which I am not sure is done in the UK by GP's but I presume it is?
But when it comes to Hospital specialists, they stick within their areas of expertise and their current literature which definitely is putting ME in the functional category. To put it bluntly from my standpoint it is "Yes, it is real but we can't help you, go over there and die" All the medical colleges in the UK (medicine and psychiatry) are to blame for holding on to these diagnoses when clear biomedical evidence shows ME is not a) psychological and b) not psychiatric. They are not questioned about the paucity and lack of strength of their scientific literature, but we and our doctors are.
It appears Dr Strain was a physician who had upskilled himself. He was the designated ME "specialist" but he clearly thought Dr Weir had the most specialised knowledge for Maeve. I believe he was trying to give Maeve hope by talking about taking her to Germany for treatment with ?plasmapheresis for autoantibodies which is still in the very early experimental phase. She was not well enough to travel to another country. But Dr Strain also suggested quite reasonable blood tests on the first admission to test her cortisol levels (Synacthen Test), I don't know if they were done. I will probably have a different view on giving additional fluids to help her OI, compared to other doctors on here, but on my risk/benefit calculation, that should have been tried even with normal U & E's. And I believe she was not terminally ill on her first admission (she had lost only 10% of her body weight) triggering her admission and should have had a trial of an NJ tube and then a PEG. If it was some sort of mast cell reaction in her gut, the hospital dietician appeared to be trying different feeds and she was sent home on them. There were potential treatments for MCA to trial also as an inpatient. It fell on deaf ears. Failure to provide proper medical follow-up was also a major failing.
They minimised her illness (and definitely there was stuff going on about her behaviour being "wrong"). I do believe some of the FDIA evidence came from the hospital, as DCC would have asked them for a report of some kind. This delayed them focussing on her physical needs. (From my point of view as a retired psychiatrist, behaviour is just behaviour, if you don't ask and try and understand the patient's experience, from them and their main caregiver, you have failed the patient. If you are always looking through a lens that ME is a psychosomatic illness, you have failed the pwME and their carers. If you think there is psychological factors with ME, outside the normal psychological process of having a chronic and (potentially deadly) illness....Where is your questioning of that? where is your proof? there are many reasons to behave in a certain way, not everything is pathological).
There is no clear evidence they asked a CL psychiatrist or psychologist to clarify this "behaviour" (which of course could have just made the situation worse...but Physicians have no formal training in health psychology or psychiatry). The gastroenterologist, but also all of these physicians, believed their own psychosomatic ideas on our illness (no doubt taught to them), but also may have had their own personal biases driving that.
Of course, I would like read all the testimony and I think Nightsong with her knowledge and experience, sums it up for me. I would also like to see the medical, CL psychiatry, nursing and any social worker's notes. But we will never see them unless there is a public inquiry. That seems unlikely, but one never knows, maybe after Dr Helmsley takes the stand we can see what stance he takes as Chief Physician of the Trust. He will have had to do his own internal inquiry. I wonder what he will say.... They have made changes, that is the first public admission of failure. I hope that will help other people in Devon and the UK and in other countries like my own.
I know, if I got very severe ME, I would like to go to hospital and be treated like any other chronic illness with feeding problems. Although there are some challenges for us due to the severity of our illness (cognitive dysfunction, communication, PEM, hypersensitivities due to ME, co-morbidities etc), that shouldn't impact on the standard of care we are given. If I had had the lack of treatment she experienced at this hospital trust, I can understand from M's position to have used the last of my physical and mental capacity to refuse further treatment and die at home.
Her mother and M tried their very best to advocate for themselves, with an advanced directive and paid for private ME specialists, but that was just not enough. I have a partner that would strongly challenge medical decisions based on psychologising this illness, if I am ever an inpatient, i.e. getting a lawyer and asking for a judicial review, if they deny me treatment or start talking psych rubbish. But if I didn't have him, I would be at their mercy, with my advanced directive clutched in my hand, hoping they would read and abide by it....
I think the last consultant, Dr Fox may have been thinking of sectioning her (he basically said he would've used the strongest language to persuade her) but because she had mental capacity, he had no choice but to discharge her home and palliative care was started. I think M thought she was terminal and no longer wanted the medical care they were offering. The damage had been done during the first and second admission from the sounds of things. She knew it was too late. I don't know if intervention then would have saved her life but she used her right for self-determination and denied consent. That, unfortunately does, I think, allow for the coroner's findings on this stage. But I do wonder if Sarah and Sean will appeal the finding as the neglect stipulation was not allowed. I think this could be legally challenged but don't understand the ins and outs of coronial law in the UK.
I don't know what the UK version of this is. But I believe Maeve and her family were denied legal rights whilst M was an inpatient. In my country, this is the Health and Disability Code of Rights.
https://www.mcnz.org.nz/support/support-for-patients/your-rights-as-a-patient/
This would have provided me, if I was in a similar position, with an opportunity to get a Second (and Independent) Opinion on the Gastroenterologist's advice. And if CL psychiatry was involved and talking psychosomatic and unfounded psychological stuff - a Second Opinion (and Independent and chosen by me) of that too. If this found in my favour, through legal scrutiny of the treating doctors via Judicial Review, that would examine all the evidence, and worked through all the eventualities of not providing certain treatments (eg TPN) and carefully looking at risk /benefits at that point in time etc. Of course, that takes money. I think Sarah was in a very difficult position being a solo mother and carer and it saddens me she did not get proper Social Worker support, which would have provided information on the legal rights for herself and M and legal processes she could have used.
In my country, if in a similar situation, my family could now make a complaint about my care, to the Health and Disability Commissioner (HDC), who would then have to make a formal inquiry into all the care provided by the hospital and the individual doctors (and the hospital would have to release all the medical notes to the Commission). The HDC get independent second opinions on the treatment and then individual treating doctors, if they have been found in breach of the code, are referred to the Medical Council for disciplinary purposes.
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