To think that vunerable dementia patients should not be used for research and training aids by the NHS without full informed consent by the patients carers

[Mrsdavidcaruso]

My best friends husband is 59 and has frontal lobe dementia she has terrible trouble getting him the help and support they BOTH need, so when she got an appointment out of the blue for him to have a CAT scan and a dexterity test she was over the moon thinking at last she would have the answers she needs about his condition, how far it's progressed and the likely outcome, she knows it cant be reversed but no-one else had given her any info on just what the future will hold for her and her DH - not an unreasonable assumption.

She was a bit concerned when the Neurologist seem PLEASED when he failed the dexterity tests, but was driven almost to tears when she asked when she would have the results of the scan, only to be told the tests were for training and research only and the results of his scan would be used for a training graph.

When she protested saying she hadn't given consent for this she was told they have a 'best interest of the patient' clause for people who cant consent themselves therefore HER consent was not needed.

When she said she wasn't having her husband used as a lab rat the Doc said 'now now it's not like that' to which she replied its exactly like that and we are leaving now.

She phoned her GP who was furious and is actually going to report the Neurologist to the GMC and has told her she does NOT have to attend anymore appointments at the hospital unless the GP herself has arranged them
know we need research I know medical staff need to be trained, but is it ethically and morally acceptable for a man in his condition to be left scared and confused after tests that are not even for his benefit and his wife still does not know what the future is going to hold for them both.

I am very angry on her behalf

If it is an NIHR funded study then you can find out details here, including which hospitals are involved. public.ukcrn.org.uk/Search/Portfolio.aspx?Level1=2

I can definitely confirm that Mrsdavidcaruso has posted on research related topics before. Even though we disagreed on at least one occasion, I can honestly say that she knows what she's talking about. Hope that helps you nocheese.

The GP reporting immediately to the GMC just doesn't ring with me either. It's not the first thing you do when a patient comes in complaining about a consultant, no matter how true and genuine the complaint. It may happen, down the line, but the GP reporting him to the GMC as an immediate reaction also sounds very very odd.

The story in the OP appears to report an act of battery. If OP knows her stuff, I would expect her to be advising her friend to seek legal advice, not asking MN whether she is unreasonable.

You've made it clear which hospital you're talking about, which makes me uncomfortable, given the neurologist is unable to defend themselves.

This is very strange.

The GP reporting immediately to the GMC just doesn't ring with me either.

Really? Someone comes in to the GP upset and there is one practical thing they can do that might in a small way make them feel just a little better, and you don't think they would do that?

No. I don't. Reporting to the GMC is a huge thing.

Oh and we have talked about legal advise but she is waiting to find out the outcome of her GPs complaint and if her MP takes up the matter which they have promised to

There are not several hospitals. Anyone who knows the area knows which hospital it is.

I do not believe a GP would report a consultant to the GMC based on what you've said in your posts. Very strange.

The situation is very strange, and awful for your friend. I had a google and cannot find any studies that seem to fit. It just seems inconceivable that a doctor would do this. I don't mean I do t believe you, I just mean it is really odd. I wonder is this going to be a big news story soon?
I agree it is an odd thing for the gp to gmc refer straight away. I would expect her to discuss with her practice manager and also the hospital head of dept first.... But maybe she has already had a patient in the same position and alarm bells had rung.
It really is odd and awful.

Nocheese I don't care what you do and don't believe the situation is as I have described.

Reporting to the GMC is a huge thing.

Indeed it is, but the person reporting is not judge and jury and just that will not be career ending. What might be if if the investigations found the allegations are true, then the decision made around that. Oh wait, that makes the actual reporting not such a huge thing after all.

I will liken it to my situation. I have been reported to SS. I have been reported to the RSPCA. A few others too. Each and every person or body I have been reported to has investigated the allegations. They do not just take my children or dog away on one person's say so. That makes the reporting not matter to me so much.

If this doctor has done no wrong it will not be a big deal, if they have, then the GP reporting will not be the cause of any trouble to come out of it, their behaviour will be!

To be fair Nocheese is right in what she is saying. I won't bother reiterating it because it's not what you want to hear but everything she's pointed out is valid.
What ever the real story is it's pity that your friend is upset and she should follow it up via pals even if it's only to set her mind at rest that nothing untoward happened.

As someone who has worked as a doctor, I think the GP has acted correctly and responsibly. If a doctor becomes aware that a colleague may have failed to abide by the GMC's guidelines on Good Medical Practice, they are duty bound to report it. I had to do this once when a colleague of mine was turning up to work apparently under the influence of drugs (white powder in his nostrils and dilated pupils).

Just go to the tabloids, they'll lap this up. Your friend stands to make a lot of money selling her story (money to help get respite care, so all good).

You know, as long as the facts all check out.

lljkk er sorry why would she go to the tabloids hasn't her Husband been through enough remember it wasn't HER who reported the Dr to the GMC but her own GP who is taking the matter seriously. to say she may be in for comp or a sad face in the DM is insulting as far as she is concerned the GP is handling the matter and she has been told by the GP to bin any letters from the Hospital unless the GP herself has referred her DH and YES the facts will check out so unless she ever takes legal action the mater is being dealt with and she can go back to the task of caring for her DH

Junow
Nocheese has been told she is incorrect in saying no adult can consent for another adult by a few posters on here including ones who seem very much to know what they are talking about.

And as it being and odd story of course it is that's why I posted it and that's why her GP is taking action. She also accused me of lying as I am posting about a friend and not something that happened to me and accused me of naming the Hospital which I didn't.

And why the FUCK would she contact PALS to see if nothing untoward has happened when her Family GP has already told her it HAS

Mrs, ignore the twats on this thread. You know what is true, and you need to support your friend.

I gave a link up-thread to show how to complain about research, but feel free to pm me, I do have contacts who could help.

As for going to the tabloids, oh pleeeeeaase. All that would achieve is a reduction in people prepared to take part in vital research because of one (potentially) stupid doctor.

Has the husband been deemed unable to consent? Is it possible he consented to a study at the beginning of his illness, and that consent has not been rescinded as he has not yet been deemed unable to consent, or the study has not been advised that he is no longer able to consent and his PoA has withdrawn their consent for his participation?

Hi Plecof I don't think he did long story short 5 years ago he left her for another woman, 2 years ago she dumped him on my friends doorstep saying she couldn't cope, my friend took him to the GP as he was in an awful state and he was diagnosed locally to her, there was nothing on his medical records from his old GP in another part of the country, when he was diagnosed in her local area and she was with him he certainly wasn't compos mentis enough to sign anything. But yes possibility of course

Tooold you have been great thank you

As zeezeek et Al said. Saved me writing out similar responses, I suspect we work in the same small field!

Agree with nocheese that you should probably request that this thread is deleted. As previously said anyone who knows the area will quickly be able to identify the neurologist.

Lego why? sorry not going to do that. Unless MN makes me of course. Obviously what happened should not have, it is was permissible or routine, just the way things are done, then her GP would have made her aware of that, something along the lines of I know you are upset Mrs xxxxxx and I can ask the Hospital not to include your DH in further research but nothing untoward has happened, not tell her she is reporting the Neurologist to the GMC and not tell her to totally ignore any further appointments from the Hospital.

Why should the Neurologist (IF they can be identified by area alone) be protected if they don't protect their vulnerable patients, why should they be treated with respect and courtesy if they treat those patients and carers with contempt.

Because as nocheese said, the neurologist is unable to defend themselves. As with everything there are two sides to every story and then some grey bits. I appreciate you have quoted your friend word for word, and she does not lie but everyone spins a story to their own agenda and there is every chance the neurologist has a different version of events. If the GP has reported it to the GMC, and the version of events is as your friend said, I look forward to reading what the GMC have to say on the matter in their summary of the complaint/ investigation.
And yes they can be identified by area, as they work in a geographical area, thus tends to be a small team covering a certain area.

My friend has NO AGENDA so is not spinning a story.

Sorry, that may have been the wrong choice of words. What I meant is when telling a story (by that I mean event/ situation etc) you will emphasises and stress certain words, phase things in a certain manner to get the response you want I.e.shock/ horror/amusement/sadness. It's hard to be objective when emotions run high, is all I meant by it.

Or as my friend did in a sad matter of fact this is par for the course way its the fact that angry as she is and sad as she is she almost expects to be treated like this by the 'professionals' paid to help her and her DH