Is this 1984?

[UncoGuid]

I am a regular but have name changed as well the title says it all.

My dd 14 has long standing physical problems which are believed to have a psychological origin.
We had an assessment visit at a well-known hospital recently and have now had their report.

There are various minor inaccuracies and some true but seemingly irrelevant observations which mount up to feeling very judgmental.

This is the context but the main point is that we are regarded as being unwilling to engage in services provided by the local child mental health team. We have actually done everything we were asked to do. They themselves have suspended services while waiting for this referral. One of the hospital's recommendations for ongoing local treatment is one to one goal driven work with a psychologist. I asked about this last summer and was told it wasn't possible or suitable.

The meeting at the hospital was conducted badly with no time for us to speak without the local team there. They also revealed some things which dd was unaware of without checking what she knew. They then comment on her behaviour as very nervous with seemingly no appreciation that that is a really normal reaction in this situation.

It is also obvious that the local team has passed on a lot of family information which we did not know that the hospital knew. We have no idea what else they have said about us. How can we be expected to work on sensitive and personal stuff with a team that are not open with us?

I need to see all of dd's medical records as a first step. I know what the procedure is but tips on avoiding anything 'going missing' would be appreciated.

I know I sound paranoid but that doesn't mean that the services are really friendly or well-meaning after all.

I'm sure that you can challenge inaccurate reports, though I'm not sure where to go as a first port of call - possibly write back to the team you saw with your DD.

Do you have the refusal for the work with the psychologist, last year in writing? It would be helpful if you have copies of any CAMHS consultation notes, if they help to put things straight.

I agree you can challenge. I was admitted once and said something on my record was untrue and it was changed.

From what I understand it's harder for medical records to go missing than educational ones - so that's a blessing in disguise.

I also agree to check back through previous letters and emails etc and see if it states they are suspending services until after the big appointment.

If it doesn't try a sneaky way of getting them to admit it now by emailing them asking why they haven't responded or provided the services agreed at x appointment. They may just email back that's it was due to big appointment and that's all you'd need as proof.

So sorry your going through this, DD as well.

Pm you okay

It is also obvious that the local team has passed on a lot of family information which we did not know that the hospital knew. We have no idea what else they have said about us. How can we be expected to work on sensitive and personal stuff with a team that are not open with us?

On a different type of forum, one poster worked for a MH charity and I was absolutely horrified to learn that their cases were dealt with by 'teams' of people, SWs, medics, HVs Psychs etc. who all pooled the information they had with a view to achieving a better outcome for the patient.
I can see in theory where that sounds like a great idea, but in practise, as you've seen, the patient and their family are not informed about this approach at all. 'Professionals' treating your dd like a case not a person, deciding outcomes on their own theories of what should be available without checking what actually is available is abysmal.

They also revealed some things which dd was unaware of without checking what she knew

Definitely raise this, it's appalling.

I'm so sorry you're having to lock horns over this, it should have been done in your dd's best interests with a view to helping her, so I do understand why you find the whole thing so Orwellian.

The best way to get all the information is to research the process for each independent agency, prepare the letters and evidence together and send all letters by recorded delivery on the same day. I would cover education and SS too and ask for information both on your child(ren) and on you.

And, then prepare yourself. Receiving the results of a DPA is absolutely horrible so make sure you are well in yourself enough to read it.

I would also send a letter when you can just asking them to 'clarify' that you understood correctly their allegation of your not engaging in services, and also for evidence of this plus anything that shows the services you supposedly did not engage in were appropriate to your chikd's needs. Say you were alarmed by this statement and need the allegation explained clearly in detail so that you can try and address their lies misconceptions.

I was once accused of not engaging with a service. It was for a PECS course run by someone who had never themselves done the official training and DS was sentence-competent verbally. They only wanted me In the service to tick their boxes of services offered.

I put in a formal complaint to my NHS. I got in touch with the head of my areas customer services and from there did a DP request. I did feel it was complete unlike the education request.

Agree prepare mentally to read it. Things was said about me in internal emails. However I did feel it was warranted and said in a professional way ie "Mrs 2boys could have done xyz before diving straight into a formal complaint. Please ensure your staff do not tell parents the NHS is to overstretched to meet needs, this is not the picture we want to paint...." which only raised my eyebrows not my blood pressure.

Oh, and OP, you are probably driven by anger now, but ask yourself honestly if this can wait a little bit whilst you recover and regroup or whether addressing the issue needs to be done urgently. The information is likely to be exactly the same in a few weeks as it is now, and you can correct things any time.

Gutted that a 'well-known-hospital' have left you coming away feeling like you do. AND that you must feel your dd's care is now at risk.

We have a CAMHS appointment on Wed. I need to clarify what they expect to get out of family therapy and so I need to phone them to say that we are not bringing dd to first appointment.
Think I better try and get request in before then to reduce time for redaction.

Other than the family therapy which has been on going for ages but just seems to go round in circles we have had no input from CAMHS since last summer when a psychotherapy assessment decided that she wasn't suitable for it. I asked about psychology input: it was discussed at a meeting I wasn't allowed to attend and I was told no. Since then the focus has been on the hospital assessment.

Blank yes I think they do work as a team. The psychotherapist is sort of acting as her keyworker but as it isn't her usual role it is very satisfactory. They said they were looking for someone else last summer. I don't know who is really in charge of her case.

Just a thought: try working out what outcomes you want.
Do you just want the record correct? If so write, ideally with evidence, saying that you know they are over-stretched and can understand mistakes happen, but there were quite a few mistakes, and it will help no-one if these remain on record - some future team might complain...
The nicey, nicey stuff is there to put them in the right frame of mind to do what you want them to, and the reference to a 'complaint' is to make them realise that YOU might complain, but that you are not actually threateneing that. yet.

If you want to stop them ever mistakenly breaking news to a child without realising then this merits a separate letter (they cannot manage 2 things in one letter). Just take care that raising this does not make them so cross that they fail to correct your record.

Good Luck