Countess of Mar's Formal Complaint to the BBC

[Binkie4]

The chronology of the family's complaint shows that Dr Crawley was under investigation by the GMC at the same time as Dr Speight. Have I remembered correctly? But restrictions were placed on Dr Speight's licence to practice and not on Dr Crawley's. I wonder why?

 

[Daisymay]

The chronology of the family's complaint shows that Dr Crawley was under investigation by the GMC at the same time as Dr Speight. Have I remembered correctly? But restrictions were placed on Dr Speight's licence to practice and not on Dr Crawley's. I wonder why?

Quite so, and both GMC complaints were about the medical care of the same young person.

 

[Daisymay]

Margaret Williams has provided an up-date on The Countess of Mar’s letter of 3rd November 2016 to the Director General of the BBC about Esther Crawley’s promotion on BBC Radio Bristol of her FITNET trial.

The letter has been viewed 2,310 times so far.

Lady Mar has now received an email from Julia Burton, Correspondence Assistant, Executive Unit, Director General’s Office, apologising for the delay in acknowledging her letter to Tony Hall and promising to be in contact again with a response as soon as possible.

 

[Binkie4]

@Daisymay- I find this mystifying. If there is disagreement about how to treat a child, someone has to make a decision on the correct/ advisable way forward. I wonder how this is done? I cannot see the logic in restricting one practitioner and not the other. I suppose Dr Crawley pursues CBT and get which is in line with Nice guideline CG 53. But we ( including Nice) know that this guideline is not fit for purpose. So GMC have rejected family's complaint and they are going to appeal, so we conclude the family oppose Dr C's treatment, while accepting Dr Speight's?? And meanwhile EC goes on with Fitnet and Magenta. All quite mystifying and worrying.

 

[trishrhymes]

@Daisymay- I find this mystifying. If there is disagreement about how to treat a child, someone has to make a decision on the correct/ advisable way forward. I wonder how this is done? I cannot see the logic in restricting one practitioner and not the other. I suppose Dr Crawley pursues CBT and get which is in line with Nice guideline CG 53. But we ( including Nice) know that this guideline is not fit for purpose. So GMC have rejected family's complaint and they are going to appeal, so we conclude the family oppose Dr C's treatment, while accepting Dr Speight's?? And meanwhile EC goes on with Fitnet and Magenta. All quite mystifying and worrying.

As I understand the NICE guidelines, flawed though they are, they only recommend GET and CBT for mild to moderate sufferers and make it clear that this is an option to be offered, not something to be enforced. It does not recommend these treatments for severe ME. Obviously we must not be told the details of this particular case, but in general, I can't see how anyone can be forced to undergo CBT or GET. Doing so would be completely unethical.

 

[AndyPR]

It does not recommend these treatments for severe ME.

Aren't I right in thinking though that EC asserts that there is no such as thing as severe ME in children? And I've certainly seen her saying that children need to be treated differently to adults.

 

[dyfalbarhau]

Aren't I right in thinking though that EC asserts that there is no such as thing as severe ME in children? And I've certainly seen her saying that children need to be treated differently to adults.

Isn't severe ME/CFS in children actually Pervasive Refusal Syndrome?

 

[user9876]

@Daisymay- I find this mystifying. If there is disagreement about how to treat a child, someone has to make a decision on the correct/ advisable way forward. I wonder how this is done? I cannot see the logic in restricting one practitioner and not the other. I suppose Dr Crawley pursues CBT and get which is in line with Nice guideline CG 53. But we ( including Nice) know that this guideline is not fit for purpose. So GMC have rejected family's complaint and they are going to appeal, so we conclude the family oppose Dr C's treatment, while accepting Dr Speight's?? And meanwhile EC goes on with Fitnet and Magenta. All quite mystifying and worrying.

The patient and parents should be informed of the option, likely outcomes and dangers. Then they should make an informed choice. Anything else doesn't feel like informed consent. Also misleading patients about the chances of success feels like it is not informed consent.

 

[user9876]

The family may challenge the GMC’s decision but are not in a position to do so until they are in receipt of the GMC’s expert opinion documents (which they have already requested, but for which they have to allow a full 40 days).

I wonder who wrote the GMC's expert opinion. That is probably more significant than what it says.

 

[Invisible Woman]

As I understand the NICE guidelines, flawed though they are, they only recommend GET and CBT for mild to moderate sufferers and make it clear that this is an option to be offered, not something to be enforced. It does not recommend these treatments for severe ME. Obviously we must not be told the details of this particular case, but in general, I can't see how anyone can be forced to undergo CBT or GET. Doing so would be completely unethical.

What you say should be true and at one point the UK's Chief Medical Officer (Liam Donaldson at the time I think), did state that people should not be forced to undergo treatment. The reality is quite different for a number of different groups:

1) Children - as a parent being threatened with the removal of your child unless you comply with treatment advised by a medical "expert".

2) Children/young adults with parents who believe the doctor's advice over what their child tells them. This is a real problem where there are too many docs who toe the NICE guidelines.

3) Adults who are told that if they don't try the treatment then they are obviously do not want to get well and so may lose benefits. The person may not know enough, or be well enough, to contest this. They may not realize to what extent their health may be damaged ('cause no one wants us to see those figures either).

4) Adults who are newly diagnosed and still in employment. There are short courses for occupational therapists on CFS/chronic fatigue (one day I believe), covering how to diagnose and what to recommend (CBT & GET). They may be given no choice other than to follow the company OT's advice or be penalized.

5) Adults who are covered by a Permanent Health Insurance policy. Some of these policies, depending on the wording, reserve the right to terminate payments unless you follow the treatment path they recommend. Again, if you want to keep the roof over your head and you may not be aware of the possible harms, you will comply.

Essentially, the NICE guidelines can be just guidelines or inviolable rules depending on what suits the establishment. Even very well meaning medical staff won't necessarily read the fine print, they'll take the headline info and recommend that. You have a diagnosis of X therefore the treatment is Y and that's that.

All roads, in the UK, end up back at the NICE guidelines. People are either mislead or forced to follow a treatment path which may well cause harm and that harm may be permanent. They need to change.

 

[trishrhymes]

Thanks for spelling that out, @Invisible Woman. I know this has been the effect of the NICE guidelines. I was not meaning to defend them in any way, simply to say, as you have done more clearly, that the NICE guidelines are dreadfully wrong and even more dreadfully misused in an entirely unethical way.

 

[2kidswithME]

Quite so, and both GMC complaints were about the medical care of the same young person.

The mind boggles!, curiouser and curiouser. Best wishes to both the family involved and to the Countess in her complaint.

 

[Luther Blissett]

Thanks for this @Luther Blissett

You're welcome @Molly98

I don't like making people feel powerless, but wouldn't wan't people with limited energy and emotional resources to get worn down.

If anyone remembers John Humphries and a Documentary called "The Future State of Welfare" , a complaint was made about 55 (!) factual errors contained in the programme.

The whole saga was blogged about by the complainant, http://masondixonautistic.blogspot.co.uk/search/label/Case #3

(Guardian readers may remember MasonDixon as Arec Baldwin from comment is free)

Off the top of my head media watchdogs to publish or research complaints about the BBC, Greg Philo at the Glasgow Media Group, http://www.glasgowmediagroup.org/ , Spinwatch http://spinwatch.org/ and MediaLens @MediaLens on twitter. Other news groups such as The Canary http://www.thecanary.co/ may be interested too.

 

[Daisymay]

The Countess of Mar has recieved this reply from the BBC.

The first page is a short letter from Lord Hall himself, and the two following pages are a more detailed response from the BBC’s Assignment Editor, Health, Science and Environment, BBC News.


http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf

or

http://bit.ly/2ggzzT5

 

[Wildcat]

.
Staggering Rubbish - what an Utter Crap response. Disgusting.
That response from the Beeb is actually worse than what I anticipated..

 

[sarah darwins]

The SMC is a valuable resource for advice on matters requiring expert understanding but it does not condition our journalism. BBC science and health journalists always check directly with the researchers involved in the reports they cover.

So having got their 'expert guidance' from the fanatically pro-cbt/bps SMC, their idea of achieving balanced analysis is to ask the researchers for their opinion.

The whole problem with BBC coverage of this issue is that the BPS researchers and the SMC are the ONLY people they talk to.

What a spectacular exercise in missing the point.

 

[Barry53]

But this ignores the issue of scope. I would expect the above is true, within the scope of what the SMC brings to the attention of journalists. But the SMC's scope is limited to a subset of the whole truth, and does condition journalism by omission - ignoring some stories and emphasising others. The SMC does not proactively support the truth, the whole truth, and nothing but the truth. By ignoring the issue of scope, the BBC can convince themselves they are right.

 

[sarah darwins]

The SMC does not proactively support the truth, the whole truth, and nothing but the truth. By ignoring the issue of scope, the BBC can convince themselves they are right.

Yes. The letter ignores the fact that BBC journalists often attend events staged by the SMC, who are very effectively setting the agenda. That's not a 'resource', that's a lobby group.

 

[Wildcat]

.
The SMC have admitted to engineering and orchestrating media stories about ME and the so called harassment of so called scientists.
..
Edit - the Science Media Centre is the Master pulling the strings and the BBC dances to the SMC's tune.

 

[sarah darwins]

.
The SMC have admitted to engineering and orchestrating media stories about ME and the so called harassment of so called scientists.
..

We haven't forgotten the award they gave to a BBC 'journalist' for faithfully repeating the SMC line about death threats, the line demolished by the ICO tribunal judgment. The drinks and canapes at the SMC must be first-rate.