Is there a wider problem with informed consent and children?

[FermatsTheorem]

Obviously, this is all over the Times today in connection with trans-identifying children, and rightly so. I've been saying for ages that if your child is not old enough to watch a detailed video of a "sex change" operation, or have full and frank discussions about loss of sexual function (which it would obviously be unethical to discuss with a young child), then watchful waiting is the only appropriate path.

But it occurs to me there's a wider issue with medical care. My DS had a medical condition where "to treat/not to treat" was a dilemma - some good outcomes, some inevitable consequences either way. (Precise details not relevant - just that it was a balancing act). However, all the way through, standard procedure in my NHS trust seemed to be to have discussions in the presence of the child, which I felt really hampered me from asking detailed questions about "worst case scenarios" and their likelihoods - because I didn't want to scare the shit out of my child.

So I felt like I was having to make a decision without being able to ask the questions that would have enabled me to give informed consent, because of the way the consultation process was set up. (Fortunately I have a scientific training and know how to use google scholar, so could do some digging on my own).

But if this is the case with a relatively minor surgical procedure with no huge political issues around it, which has been weaponised by appeals to emotion, how much worse must it be for parents trying to make their way through the minefield of transgenderism?

And should the NHS have a procedure in place where, for any proposed surgical procedure on children, there's some way of letting the parents have discussions with the HCPs without the child being present? (I'm a single parent, so the option of one parent taking the child into the waiting room while the other asks the awkward questions wasn't there).

It does seem to me that there must be room for... how to put it? Big Word and Little Word conversations? Where nobody tells any child a falsehood and no child is made to feel as though medical interventions are being done to them without any control on their part, but also where parents are able to have the more sophisticated conversations that will enable them to better parent and prepare an ill child.

I've been in the same situation with my daughter twice. I didn't feel I could ask all the questions I wanted because my daughter was always present, time limits in consultations and just being overwhelmed by the process.

I trusted the consultant, but I didn't feel that the process was completely informed consent.

I do think there should be more opportunities to talk through the process and ask questions, not just in consultation time.

I believe there is an issue over consent in general in the Uk with regards to medicine.

People do not understand what it is properly for adults never mind children.

This means informed consent is rather sloppy across the board because there isn't proper enforcement because its taken for granted, no one complains about a problem or necessarily even understands when there has been a breech!

It's notable on threads for childbirth on MN you repeatedly hear comments like 'I should just be grateful' or 'I didn't feel able to challenge' and not always in relation to an emergency situation, but routine situations. There are common blocks where people are actively told that if they 'don't comply' with one thing then 'there will be x negative consequence'. For example: if you don't comply to this test, then you risk the child's life. And it's particularly used against women because fathers / men are more conditioned to challenge things as a rule. The key phrase being that for consent to be informed and given freely it must be without duress and in a manner that is factual, is realistic, is at a level that can be understood and gives a number of alternatives where ever possible or explains why alternatives are not appropriate to the situation.

For something to be properly informed consent, it must be given every time. It must not be given in a situation where someone feels pressured in any way.

That would include a situation where a parent felt unable to ask relevant questions in the presence of the child. And whilst this is able the child and they also should be involved in decision making about them, it's also very appropriate that you should be able to have discussions without your child there too and then you and the HCP THEN discuss it with your child in a manner you

BOTH think they will be able to process. The consent bit therefore does involve a discussion between the parent and HCP on HOW to best inform the child.

The problem comes when a child gets a bit older and they are more capable of understanding by themselves. But there should always be an opportunity for parents to discuss without the child too if their consent is legally required.

My point being here, that if you are feeling uncomfortable in any way, that's when you need to challenge because you not only have the right to, but if you don't you can't give proper consent.

The barrier to this is of course, the limited time of the clinician. The trouble is, if the clinician doesn't have it, they are putting themselves at risk of being challenged over whether proper consent is given...

... In other words, it's their problem to sort out not your to be grateful for the treatment you are getting or for you to compromise consent over.

However, all the way through, standard procedure in my NHS trust seemed to be to have discussions in the presence of the child, which I felt really hampered me from asking detailed questions about "worst case scenarios" and their likelihoods - because I didn't want to scare the shit out of my child.

Not a medical issue as such but I've had this issue for years with CAMHS (DS has been treated by them for over 10 years). I found it difficult because you only get an appointment every 3-6 months and I don't believe talking in negative ways about DS in front of him is helpful - however there are things I need to say to the clinicians without sugarcoating it.

I have worked around this to some extent by turning up to at least one appointment per year alone. Or sometimes they have agreed to distract him in another room checking his height/weight which gives me chance to talk openly.

I've also on occasion been disturbed by some of the things clinicians have said to him that I've felt were very unhelpful. Within the service you end up shunted around a variety of professionals, some who are very good and others less so but each one with their own 'take' on things. After a while the inconsistency makes the whole thing a pointless exercise.

I've given the service feedback on many occasions and always wonder how a service aimed at children can get many basics wrong.

Anyway we are being signed off this month after his recent ASD diagnosis (which I told them was the case 10 years ago) they don't treat kids on the spectrum so it's all felt like a long, long exercise in futility.

The NHS shouldn’t be offering non-therapeutic treatments. There isn’t enough money to properly treat people who are actually sick let alone to validate identity.

Interesting to see others are having the same issues. I agree time constraints are a big part of it.

I've never had a big health issue with DD, but a number of relatively trivial things where it would have been much more straightforward to have a discussion with the Dr or other HCP without her present.

Conversely, in the context of trans-identifying kids and probably some other issues, having a parent present may be distinctly unhelpful - I don't know at what age kids can be seen alone? The case mentioned in the Times where the Dr feared the father might be a paedophile, or the many cases of suspected homophobia, are particularly worrying. In those cases talking to the parents without the child and vv might be particularly illuminating....

It all takes more time and care. More resources for CAMHS etc are desperately needed.

However, all the way through, standard procedure in my NHS trust seemed to be to have discussions in the presence of the child, which I felt really hampered me from asking detailed questions about "worst case scenarios" and their likelihoods - because I didn't want to scare the shit out of my child.

I have had a similar experience with my DS. Also, (and slightly off topic but all part of not considering the child's feelings enough), a situation where a male consultant introduced himself to me, and asked some questions about my son's medical history, then walked over to 6 year old DS and lifted his gown to check his genitals (including touching them) without introducing himself or explaining what he needed to check, and asking permission.

I found myself quickly explaining to DS but with hindsight, I wish I'd pointed out the consultant's error and asked him to communicate properly with my son.

Is ‘informed consent’ (the way the NHS use it, rather than the way it is used in America by trans individuals seeking treatment) to do with surgery? Surely with medication that you administer yourself (or as a parent) it is a bit different?

Hearwegoagain

No, informed consent is required before receiving 'any type of medical treatment, test or examination.'

www.nhs.uk/conditions/consent-to-treatment/

Red's cut and pasted the NHS guidelines in their entirety onto the Times and Tavistock thread.

What I find interesting is that where the guidelines offer specific instructions about dealing with children and teens, there's a lot (quite rightly) about informing the child what's going on as well as the parents. There's also stuff (again, quite rightly) about talking to patients alone to make sure there's no coercion.

But there seems to be a distinct gap when it comes to recognising that there will, conversely, be stuff where a child can't grasp what's being said, but their parents still need to talk about it (risks of really serious complications, versus really serious down-stream effects of leaving a condition untreated, issues around future sexual function, issues round future fertility.)

They are GMC (general medical Council) guidelines. They don't just cover doctors practising in the NHS.