I'm being excluded from multi-agency meeting about dd and not happy about it.

[NoHaudinMaWheest]

dd has been diagnosed with Conversion Disorder (when psychological distress produces physical symptoms). She is badly affected -using a wheelchair as she cannot walk and needing help with everyday tasks as she has limited use of her arms. After quite a wait she was eventually assessed by a psychotherapist at CAMHS -psychotherapy being the treatment of choice for conversion disorder.
The psychotherapist concluded that dd was not suitable for this kind of therapy as she didn't want to talk about her feelings and became positively uncomfortable when asked to do so.
At a follow up meeting with the psychotherapist she gave dh and I her reasoning and say that she and colleagues would have to think carefully and get further advice about next steps. A meeting to discuss this was arranged for next Monday. As parents we were not invited. If this was an internal CAMHS clinical discussion it might be fair enough but it is also being attended by physio, OT and SENCO and perhaps other educational profs.

I have spoken to the psychotherapist on the phone and said that I felt I needed to be present and know what was being suggested in that kind of meeting. She offered to hear and represent my views and I'm sure she will but I can't respond to others' input if I'm not there.
I got a lot of flannel about careful consideration of therapeutic options. I doubt the SENCO for example is going to have better input into that discussion than I could.

Am I right to be so annoyed (to put it politely) about this and what can I do to ensure that it doesn't happen again?

I would imagine that having a patent present may hamper frank exploration of all the possible range of causes/options.

I'm not saying I'd be happy in the slightest though!

Could you allow the meeting to go ahead on the proviso that you have right of reply?

Well a quick google suggests one of the causes is physical or sexual abuse or neglect in childhood, so I guess they want to be able to discuss that?

If you refuse to let the meeting go ahead I guess it looks like you are trying to hide something, if you let it go ahead they could decide you are to blame.

Either way not a good position to be in. Would they let you send an advocate, or at least someone to minute the meeting so you can refute anything untrue?

I used to work in school nursing and they often held 'professionals' meetings without parents present. These meetings were usually due to child protection concerns though and discussed all aspects of the child including health, social, education so that there could be a full picture of the situation before professionals decided how to proceed.
I do remember a colleague attended one of these meetings where the parent turned up and she was removed from the building.
If they are just discussion clinical treatment then imo you should be there but they might actually be discussing more than that.

I was thinking that the subject matter would be why you weren't being asked however, as it is such a sensitive issue, why can't they firstly discuss this among themselves but ensure that only the personnel who absolutely need to be there for that discussion are there, then afterwards open the discussion to include you and the physio, SENCO etc to explore other causes.

Or why can't they just have a private meeting for only the necessary professionals without telling you or anyone else not involved in that and then arrange an open meeting where every other possibility except abuse is discussed?

Without prying, this is rhetorical, have absolutely all other neurological and physical causes been ruled out? If not, I'd be shouting for those to be fully investigated before even entertaining the diagnosis they have given. I'd also be contacting every specialist I could find who dealt with children who had symptoms like hers to obtain a full list of possible causes, no matter how unlikely some may sound.

In my opinion, it is far too easy to suggest that symptoms which don't fit an unreasonably compartmentalised tickybox diagnosis criteria are all in the patient's head. A lot of people have been told that, but discovered the actual cause years later. If you are happy to support that diagnosis, then that's fine, just ignore me

Thanks for the replies. Sorry I didn't manage to get back yesterday.

As far as I know there are no CP concerns. Nothing has ever been raised or suggested over the 18+months she has had these symptoms. However my experience with ds last year should warn me than things can blow up out if the blue.

Dh specifically raised the question of out of the family abuse with the psychotherapist. We have no reason to believe this has happened but in view of recent revelations, you never know. She said that she didn't think this was likely as she had seen no signs and it is one of her areas of expertise.

As for whether I accept the diagnosis or not - I think I am rather agnostic. She has been investigated quite thoroughly though not exhaustively. Her symptoms can be a bit odd so I can see why the medics think no physical cause. On the other hand there really isn't any obvious psychological cause either.

I know that I am influenced by my own experience. I developed a ME type illness in my mid 20s. I also had a lot of symptoms that are not typical of ME. After many investigations I started psychotherapy with a good therapist and it did make an enormous difference. However I still had a lot of symptoms and over the years I have developed more. Nothing has come of neurological investigations and I have decided to stop trying to get a diagnosis.

I feel that in both dd's and my case it is not that we have something incredible rare which could be diagnosed if only we could find the right expert but that given the current state of medical knowledge and more importantly, methods of working, we have something undiagnosable.

That's not to say that dd may not have been impacted by e.g. her brother's severe OCD but she clearly doesn't want to talk about it at the moment.

I can't see a way forward at the moment but she clearly does need maximum support with her very real physical difficulties.