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

[Legovader]

Two sides to every story. However, it is clear you are not particularly interested in any other possible side being put forward - as we will never have the Dr's version, so it is pointless debating it with you. Stick to the posts that you like, ignore the ones that suggest there is more to it. That is obviously your agenda for posting it.

[zeezeek]

The Dr will have their chance to tell their side of the story. I'm not au fait with GMC rules and regulations relating to research, but presumably the Dr will go through some kind of fitness to practice investigation.

In this kind of research we rely on patients agreeing to take part because, without them, we cannot find new treatments, better treatments etc. Or, for dementia patients, we might be able to get a quicker diagnosis, give the patient early access to interventions which slow down their disease progression. One day, we might be able to find a cure. (I don't work in dementia research btw).

None of this is possible without patients. Therefore, as researchers and, where applicable, clinicians, we have a duty towards patients enrolled in our trials to keep them safe. I'm sure you all remember the Northwick Park incident in 2006.

We are all bound by legislation - both national and EU, about how to conduct clinical trials - anyone interested can google the Research Governance Framework that we all have to work within. Central to this is informed consent.

This Dr did not take consent from either the patient or his legal representative. That is the bottom line and that is why this Dr needs to be reported to the GMC and the R&D department of the hospital (who is probably the sponsor of the trial and therefore has overall responsibility for the trial's conduct) - because he is breaking the law.

I have worked in research for most of my adult life and I have thankfully seen one or two incidences of this extreme arrogance by consultants and that was many years ago before this current legislation.

[Mrsdavidcaruso]

Zeezak I don't know if this is relevant but the Neurologist who conducted this testing was the same one who diagnosed friends DH in the first place, I asked her how the Dr would have got her DH details for the trial and she confirmed this to me.


Oh and I would so much like to hear the Drs side, I would love to know why she felt she had the right to put a vulnerable patient through tests knowing that they would be confused and scared NOT for their sake but for the sake of 'invaluable data' and training graphs, how she can face a carer knowing that that carer needed answers on how far the his condition had deteriorated, how much worse its going to get, can a change of meds help, all the questions that she is paid to answer, knowing that she had no intention of sharing the results of the tests with that carer and actually being PLEASED that her patient failed the dexterity tests.

I am not sticking to the posts I like, I am getting information from posters like zeezak who I have come to respect, yes I am ignoring posters like nocheese and legovader who are suggesting there is more to it because I know for a fact there isn't.

[zeezeek]

The record of diagnosis would be in the patients notes, so when the patient presented at the clinic the neurologist (or a member of their team) would have seen the patient with a view to recruiting him if he was eligible and met the inclusion and exclusion criteria. What they should have done at that point is to go through the process of informed consent - not just enrolled the patient into the trial. That is the bit which was illegal.

It is normal practice for care teams to share information about a patient for healthcare purposes.

The Dr in question definitely acted unethically both as a researcher and as a HCP. She had a duty of care towards her patient and she failed him and his wife.

Have you heard anymore about this?

I'm so sorry for the delay in replying.