Psychological therapies - Discussion thread

[Suffolkres]

I am intrigued Robert that you were in Queens in 1999.
There was a tv documentary with Findlay.
I believe I have a recording somewhere. Featured a young dark haired man 'greatly helped' by their desensitisation intervention.
I wonder if that was you?!!!

Also, a friend and Educational psychologist Steve Phillip, 's wife was admitted but she did not benefit.

It's on an old video tape!....

 

[Robert 1973]

I am intrigued Robert that you were in Queens in 1999.
There was a tv documentary with Findlay.
I believe I have a recording somewhere. Featured a young dark haired man 'greatly helped' by their desensitisation intervention.
I wonder if that was you?!!!

Also, a friend and Educational psychologist Steve Phillip, 's wife was admitted but she did not benefit.

As far as I’m aware, Findlay wasn’t still working at Queen Square by then. I only ever saw him in Romford, and it certainly wasn’t me on TV.

I wrote about my experience in hospital here: http://strangerandstranger.net/miscellanea.htm#perceptions

 

[Robert 1973]

I have found that so many therapists think this is helpful advice. It wasn't helpful even when there were other things to focus on. Just the same sort of truism your family or friends might parrot at you.

Sorry for your experience, it sounds hard.

I was grateful that she friendly, and that the CBT I was subjected to (by an OT) was much more moderate than PACE type CBT. Overall my experience there was mixed: some good, some bad. I just wished that Findley had had to courage to say to me and publicly what I believe he knew – that someone who has had severe ME/CFS for 7 years (as I had then) was unlikely to recover, through no fault of their own, that they should be helped to prepared for a life of illness and disability, and that there was a desperate need for better services and high-quality biomedical research – just as there is now, 27 years later. But that is drifting off-topic.

[Edit: OT not OR]

 

[Suffolkres]

As far as I’m aware, Findlay wasn’t still working at Queen Square by then. I only ever saw him in Romford, and it certainly wasn’t me on TV.

I wrote about my experience in hospital here: http://strangerandstranger.net/miscellanea.htm#perceptions

Thank you for sharing Robert.
It brought me back with sharp focus and an overwhelming sense of buried grief.

In 1999, 2000, I was being regraded as a 'harming parent' .....
In 2001, my son then 17, was critically ill having suffered a pesticides poisoning on top of his ME, diagnosed by said paediatrician in 1996.
Everything you wrote strikes a chord....
I can sympathise and identify.

That's why I have continued to fight the fight for over 25 years.

United we stand.

 

[MrMagoo]

Are we the only special little flowers who can’t be told we may face a life of disability?
I’m pretty sure if you’re unlucky enough to get a cancer or MND or MS they let you know it’s going to affect and maybe shorten your life.
Why do we have to think about other things and pretend it will get better, it’s just a “phase”?

 

[Peter T]

Are we the only special little flowers who can’t be told we may face a life of disability?
I’m pretty sure if you’re unlucky enough to get a cancer or MND or MS they let you know it’s going to affect and maybe shorten your life.
Why do we have to think about other things and pretend it will get better, it’s just a “phase”?

When I started working in the 1980s, they were still some consultants who thought it was bad to tell people they had MND (ALS) or MS, it was even not unheard of that people with end stage cancer were not told their diagnosis, the argument was that it was bad to take away people’s hope.

I remember having run ins with a couple of neurologists who argued this, saying given there was no curative treatment it was better to lie to the patient. It took a lot to get them to understand that decline could be much better managed if such as alternative feeding methods or alternative communication aids were ready in advance rather than after the fact. With MND and MS once it was realised that there are management tools people were less likely to fear the difficult conversations. We just need to get there with ME/CFS.

 

[MrMagoo]

When I started working in the 1980s, they were still some consultants who thought it was bad to tell people they had MND (ALS) or MS, it was even not unheard of that people with end stage cancer were not told their diagnosis, the argument was that it was bad to take away people’s hope.

I remember having run ins with a couple of neurologists who argued this, saying given there was no curative treatment it was better to lie to the patient. It took a lot to get them to understand that decline could be much better managed if such as alternative feeding methods or alternative communication aids were ready in advance rather than after the fact. With MND and MS once it was realised that there are management tools people were less likely to fear the difficult conversations. We just need to get there with ME/CFS.

They just need to get there.

 

[Sean]

When I started working in the 1980s, they were still some consultants who thought it was bad to tell people they had MND (ALS) or MS, it was even not unheard of that people with end stage cancer were not told their diagnosis, the argument was that it was bad to take away people’s hope.

I remember having run ins with a couple of neurologists who argued this, saying given there was no curative treatment it was better to lie to the patient.

I say that among the small number of golden rules in medicine is: Never lie to the patient.

There are a couple of very limited exceptions: if the patient is in a psychotic or dementia state, or is a very small child. Even then the lie should be as minimal as possible.

But beyond that just never lie to patients. Nothing will bring distrust into the clinical encounter faster than a patient finding out the doctor has been lying (and they will find out eventually). Trust is the most essential element in the clinical encounter, and the hardest to regain once betrayed.

 

[hotblack]

Trust is the most essential element in the clinical encounter, and the hardest to regain once betrayed.

This is what so many in the medical world seem to ignore about ME/CFS. There needs to be work to gain back the trust of an entire community.

You cannot deliver medical care or work with patients without trust (this of course applies to psychological but also non psychological care). We’ve seen this happen with other medical scandals but there’s still no recognition of it here. So many of us had complete trust but have lost it through our experiences and how we’ve been mistreated.

I actually don’t think it would be hard in the most part, we’re not as difficult as some portray and aren’t asking for all that much. But some willingness to accept people have been wrong, we have been wronged and then just treating us in the same way others with serious lifelong conditions are, with recognition and compassion and a desire to increase understanding and find a cure would be nice.

I suppose some form of restorative justice may be useful too but few are asking for anyone to face anything beyond their own egos and pride

restorative justice practitioners work to ensure that offenders take responsibility for their actions, to understand the harm they have caused, to give them an opportunity to redeem themselves, and to discourage them from causing further harm. For victims, the goal is to give them an active role in the process and to reduce feelings of anxiety, unfairness and powerlessness

Source: wikipedia