Michael Sharpe skewered by @JohntheJack on Twitter

Judges...

 

education - biggest shit stirrers for children

 

Sigh. This is too often the case with most people. It will require a real moment of inspiration for someone to leap out of reality denial, and simple reason and evidence is not sufficient.

 

Not necessarily. Some may regard it as success.

 

This is where the large portion of responsibility lies, though not blame. Its failure to act for the most part. The other factions in society where this has happened have less responsibility. Its also about many aspects of society, including businesses, organisations and institutions, some of which have been mentioned. Again, this is an issue of irresponsibility rather than blame, and its organisational irresponsibility in large part, because individuals have diminished responsibility.

An individual doctor has been indoctrinated to work within whatever rules are imposed on them. They are probably overworked, and lack adequate resources to keep informed or to investigate. Its not that they cannot, its that they have a thousand things calling for their attention and have to prioritise based on their current understanding. So ME gets overlooked, and issues with medical trials get overlooked. Most doctors also lack the expertise to go into the more esoteric issues around things like the PACE trial. This goes to ongoing medical education as well.

There is an authority driven culture in most of medicine. Its one reason why organisations like Cochrane are becoming the new source of dogma ... evidence based medicine is about understand bias and evaluating science. Tickbox EBM, criteria lists, etc., cannot be dogmatically practiced, it requires ongoing thought.

Blame is reserved for those who knowingly create or promote this research using biased methods and manipulation.

Whether someone is to blame or is merely responsible they can and should be held to account, but there is a wide range of accountability involved.

We also have the issue that there is so much accountability to go around that this is yet another broad mess in society that shows how badly things can go wrong. There is enormous resistance to recognising such issues.

The solution is to find one or several (not many) key points and focus on those. Fortunately the PACE trial contains enough evidence to discredit it ... you do not even have to look outside the trial.

 

Not sure it is fair to throw blame at schools. They must follow medical advice, and also safeguarding practices - ie there is a duty to report concerns. What medical advisors to schools & social services suggest afterwards is the real nub of the problem. Also there is a serious problem is discontinuing a case once it is initiated. There seems no mechanism for halting an investigation into a family once it has been started. This is devastating for genuine parents who then find many other areas of their lives questioned - often by young social workers with little life experience and some with no parenting experience themselves!!

 

You would think that wouldn't you? I would have too, until personal experience taught me otherwise.

In my extended family, we had a crisis situation develop involving a young teen with a serious, potentially life altering, recognized disease. Due to issues at home, a single parent in mental health crisis, this was not being managed at all well. Part of the adult's issues meant they were very secretive and cut themselves and their child off from family.

The paediatric hospital service (who were excellent) told me they have to wait until things are really bad before they can get social services involved. Then social services normally do their best to ignore them. In our case, the hospital team even offered and requested, with our permission, that they attend a social service review. Social services didn't want them there and ignored them.

The school didn't chase up repeated school absences. They were also aware of these teen's medical condition. The child hadn't been keeping up with schoolwork and, while not disruptive, altered behaviour was ringing alarms bells. Nothing was done.

In fact, from the experience of my family, the school didn't do much at all and waited for someone else to take action, social services were dragging their feet in the hopes the child would reach 16 and could then simply be passed on to adult services if need be. They called us to meetings that dragged on for hours and went nowhere. This was a situation where the family were being entirely open and cooperative.

So, I would say, schools have a lot more leeway than you might think and they'll sometimes take the action that suits them best regardless of the family or child involved.

Social (child) services couldn't care less. Even when they are dealing with a child with a well recognized lifelong condition that can lead to very serious life altering and threatening complications. Even when they have hospital services pushing them. They do what suits their current agenda.

I'm sorry, this is an angry post. Our family desperately needed their input and they couldn't be arsed. Yet, a family whose child has ME they hound. No logic, no sense. Bloody useless.

Edit - clarification

 

This is always the case with reality deniers. Anyone without an open mind who will only believe what they say by definition won't listen to facts because its antithetical to their position to do so.

I agree, and the fact there has not been a simple proof (biomarker) or disease mechanism has prevented 'proving' this is a real disease. Even worse its morphed into a whole ***show of packaging lies and selling it as 'proof' and getting away with it

 

Totally understand your frustration/anger @Invisiblewoman at how the situation with your family turned out. I guess it is very difficult, and when so much is individual judgement things can get really tough. I suspect that some people will tend towards reporting anything worrisome (so somebody else takes responsibility for difficult decisions), and that others (realising the severe implications an investigation might bring) err on the side of not rocking the boat.

I guess it is something that is incredibly hard to create guidelines for, because so much must be judgement. And because so much is judgement, as you rightly point out, there will be huge leeway for figures of authority to act as they please.

I know social work is one of the high stress work environments. I couldn't do it. I wish your situation had turned out better, and that support had been more forthcoming. xx

 

Thanks @Keela Too.

To be honest, I wonder how much of it is down to deliberate policy. Child services have form for closing their eyes to things they don't want to see and being overly aggressive when it suits.

There are good schools, teachers and social workers out there, just as there are bad ones. However, the same system and policies that can tie the hands of the good ones, promote the poor attitude and behaviour of the bad.

Given the way they can disregard some cases, one could be forgiven for wondering if there is a particular policy for children with ME.

 

Absence is now a key performance indicator and drives pressures for attendance when unwell ( making things worse) , and involvement of social services ( even with medical notes acknowledging ME). I have know 2 families being threatened with safeguarding due to over zealous concerns re absence and in one, a school nurse who disregarded medical input. Some schools are good but are limited by process; others are awful.

 

Actually we have many biomarkers. We just have not proved to a sufficient degree they are diagnostic, nor do we understand the cause.

 

I think Sharpe might actually agree with this:
https://twitter.com/user/status/1004380575950487554

https://twitter.com/user/status/1004381843079213057

 

Blame the patient. If that doesn't work, blame the therapist. Blame the critics. Blame everybody except the trial authors, whose intuitive wisdom is beyond question.

 

Especially as the error margin between being harmed, or not, could be extremely narrow, and may well have delays between causes and consequential harms. Might be clairvoyance rather than medical skill that is needed.

 

But the irony is that nobody knows what skill or proper training mean here. No comparison has been done - except the one between King's and Holland where it seemed that King's wasn't much cop if I remember rightly!