United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

It might be an idea for one of the charities to capture these tweets.
These are the voiceless finally speaking out.

 

I think it’s understandable that Dr Hammond has responded the way he has, on Twitter, to accounts of harm that come up on Twitter. In the same way that I think it was reasonable for the ME association to ask for emails from those posting, on Twitter, about accounts of harm under the care of their very short lived Patron.

Despite the lack of personal response it’s possible that PH is listening.

He’s given people the info to take their experiences forward so that they can be addressed, he hasn’t gone silent or blocked anyone and is being reasonable in what he is saying. I hope parents and their children feel able to take their experiences of harm from his clinic forward. Again possible that he is listening, and is ready to learn and work to move things forward. I do understand if families feel it’s something they can’t do.

He clearly has a blind spot, when it comes to harm from his clinic, and also, I think, about the quality of the evidence for the treatments in his clinic. He says himself that he mostly sees children who are mildly affected.

However, in his Twitter feed and in Private Eye he has said that he thinks ME patients (he focuses on the severe) need urgent biomedical research - Exactly what we want.

In his Twitter feed he has also said

My suggestion is let’s take him at his word for now. Maybe he will learn something. Maybe he is someone who would work constructively for change in the best interest of patients.

I’m not naive about this - he may be too entrenched - but I think it’s helpful to differentiate between BPSers. Time will tell.

edit typos and to add - He might just want a quiet life until he retires again but I wonder whether he would be interested in a biomedical research collaboration, or ‘proper’ pacing trial.

 

All it takes for evil to flourish is good people doing nothing....

 

Yes, You’re right about all those things @Trish, I wasn’t forgetting at all, though I will admit that I did momentarily forget about the Lightning Process trial. However, as things stand PH is going to continue to run that clinic, he’s not going to be retiring for good. I’m not blind to the fact that he posted defensively yesterday. I expect he wants to continue to be seen as the jolly and kind doctor and media persona he presents. As I said, I’m not naive.

They are all going to be continuing to run their clinics as things currently stand. All of them. So what do we do? I’m not suggesting we gloss over or forget anything, and I hope more families come forward on the record publicly on Twitter and elsewhere and through official channels. This all needs daylight shining on it and it’s going to be hard for patients and their families but it always has been. If official records of harm grow it might be that there will be personnel changes at Bath and other clinics. More official reports of harm, for instance could break into the mainstream as the scandal it is and in some cases this all might even result eventually in disciplinary measures for individuals, for example. I don’t know, but I hope for change.

We’ve banked the Guideline, at least for now, and we need to be pragmatic about clinics, and push at everything. I’m not saying I know how to go about all this, but I do think in a pragmatic way we should be testing the waters.
I’m not the parent of a child harmed at Bath so may be able to see things differently, and it’s not my intention at all to downplay anyone’s suffering.

Is there potential to achieve something better for patients at the Bath Clinic? There has to be or more children will be harmed, and I was speculating about just one potential towards change.

 

I very much hope so too, Trish. The dam has to break somewhere at some point. People with ME, especially the children, need so much better.

None of my children has ME, though I still fear it now they are grown. 2 of my children have other health conditions that had significant impact for periods in their childhood and teens. My daughter got the functional overlay nonsense from some doctors. Fortunately I knew what that meant, and a medication helped just enough for her to do all her exams and after a few years she has had some natural improvement. They are both able to do most of what they want, though my daughter struggles a bit with Uni. She’ll find work a challenge, I think. I know that compared with others we’re fortunate.

I’m so sorry about your daughter Trish. I remember you posting about her before now, and your interview with Gary too.

 

Is it just me or does his tweet not actually make sense. Is he calling on everyone to use the NICE guideline verbatim, or is he asking people to suggest wording based on the guideline?

 

I can’t make him out to be honest, and I hope he doesn’t really expect Twitter chit chat to be a good way to find out the views of patients on implementing the guideline.


@Jonathan Edwards do you know anything about DR Phil Hammond that would make you think he could be worth approaching to test the waters?

 

He's a pretty hyperactive character. Part of his life is spent as a comedian who comments on health, he does the Edinburgh fringe most years, and who uses comedy to promote good health and health education, he was the presenter of Trust Me I'm a Doctor, he also writes quite a lot, a number of books, and of course his fortnightly column in Private Eye, in addition to that he's always kept up a part time health practice of some form which has included (from memory) time as a GP, time in a GUMS clinic and more recently his CFS clinic work. Hammond cut his campaigning teeth on the Bristol Heart Scandal https://en.wikipedia.org/wiki/Bristol_heart_scandal

My impression is that his social media presence is just an extension of his cheeky chappy Dr personae that he uses to engage people at a not too serious level. He's been very successful at what he does and is probably overall a force for good. But he has his own agendas and is probably not someone we could expect to be a campaign ally.

 

That was a later series

Original series[edit]
The original series of the show ran for four series between 1996 and 1999. A book by Hammond, also entitled Trust Me, I'm a Doctor accompanied the series. The message of both book and series was that doctors were not infallible and you should learn as much about your own healthcare as possible. The series was broadcast after Dr Hammond assisted in exposing systemic problems in the NHS that led to poor results for child heart surgery in Britain.

From wikipedia

 

Dr Ben Marsh has been trying to engage with him for some time and it seems it may be starting to have some effect

 

Yes imagine a restauranter being delighted that no one returns to his restaurant and concluding the only reason must be that the food and the service was wonderful and yet the restaurant next door is full of his ex customers telling everyone not to go next door.

 

Phil Hammond talking about the guideline in the Private Eye, stressing the need for further research and promoting the Priority Setting Partnership.

 

Why? (sorry I didn't understand the comment) xx