Working with Clinicians

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Hello everyone

My first post here.

I'm looking for some insights from other people's experiences - I'm guessing my own aren't unique!

My daughter has been in hospital under section for nearly 1 year now. The diagnosis of aspergers came after about a month of her being in hospital - her psychotic depression is believed to have stemmed from her struggle with this - particularly when it was undiagnosed.

She is currently in a PICU having also been 'treated' in an open ward and high dependency unit. There are many challenges for her and us as parents. The struggle at the moment is with a baffling unwillingness of her clinical team to share information with us. We've been here before with the lack of communication between staff but this is quite something. We are in a period of change of meds; possible move back to the previous hospital. We've been phoning everyday, twice a day at least, for an update but not a single return call. So all the information we have is from the snippets they have told my daughter.

The complaints procedure at the hospital is so longwinded ( they have 20 days before they have to respond). I'm just after any practical ways people might have used to bring pressure to bear on them.

Thanks all

Mike

So sorry to read this! I hope things improve for you.

Some background that may be helpful: what part of the world are you located in (country, state) and how old is your child?

Hi thanks

We're in the UK and my daughters 15 now.

We've gone from famine to feast and now three people from the unit have been in touch today. They pledge to look at their systems for passing over information ( pen and paper would seem a pretty good interim measure methinks) . I think they're too busy to sit around devising plans to piss us off but sometimes I do wonder!

Thanks again for reaching out - I've a feeling I'll be posting again before too long!

Glad to hear, that sounds scary!

In the interim, UK's autism society is here: http://www.autism.org.uk/ Might be worth reaching out while you are waiting.

I'm not in the UK myself, so I hope some of our parents who post from there (and there are many) will chime in on the process.

My son is 11 and he has never had to be hospitalized, but he definitely struggles with anxiety and depression. He has so many social struggles, knows he is different, but wants so badly to fit in. But he never seems to get it quite right and often is left out. He also is immature for his age (developmentally delayed is the appropriate term), and as all the kids around him are moving into tween/adolescence, he is still very much a boy who likes to play with toys and be silly. I don't know what it is specifically that your daughter has struggled with, but I want you to know you are not alone. It can be heartbreaking to watch your child struggle so much and not know what to do to help.

I am sorry I don't have an answer about the hospital situation.