WWYD - hospital playworkers - do they know anything about anything?

[StartingAfresh]

Just been passed round from pillar to post to try to find out what is going to happen at the pre-op assessment appointment so that I can prepare my ASD ds.

I've been told simply 'don't worry about it, we have playworkers who will see him on the day and explain everything about the operation - would you like to speak to one'.

The next thing I get is a playworker on the phone telling me not to worry about it as she will explain everything at the pre-op assessment. I kindly tell her that I'm not wanting information about the operation, I'm wanting information about the pre-op assessment in order to prepare my ds about that.

She says that he might have a hearing test. I ask if it will be with headphones or a soundproof room and she says she doesn't know because she isn't a doctor

She says he will be also seen by an ENT consultant, so I asked what he will do, but she said she didn't know because she isn't a Consultant.

ditto anaethatist

So I ask what else will happen and I'm told he will be seen by a nurse. I ask what the nurse will do and she says she doesn't know because she isn't a nurse but the nurse will explain on the day.

So I asked if I could speak to the nurse to explain now. Eventually the nurse came on and was brilliant. She explained enough and reassured me that if there were going to be any changes to the plan or reassessments I could ask for 5-10 minutes before it happens to prepare ds. She said that at the pre-assessment ds will get to look around the ward (even though the pre-assessment is 6 weeks before the op and a playworker will play with him with dolls to explain the operation.

I said if it was all the same to her, I'd like to skip the playworker thingy as ds won't understand and certainly won't remember by the time of the op, and that I'd rather do the preparation myself as I am confident I can get him to do anything with explanation and advanced warning.

She didn't seem particularly happy about it.

Was I really unfair. I wasn't getting any understanding vibes from the playworker at all. In fact she didn't seem to understand why I wanted info in advance and even suggested that she would ask doctor to recommend a pre-med to make ds drowsy so that he complies.

i think it depends on the playworkers. my sons one at great ormond street is excellent in every respect and even makes referalls to the psychologist if she feels its necessary or if the parent has concerns. I reckon you got a newbie or just someone who is crap at their job!

ive just had the same experience with the Named Officer at the local LA, every question i asked i was told "i dont know about the process for that...." in the end i gave up and politely told her she didnt know a lot and perhaps needs to speak to her manager about training ...she sounded about 16

glad the nurse was helpful and no you were not unfair and it leaves the playworker free now to confuse someone else with her lack of understanding about anything

At local hospital - on the day of the ops of 2 of my DS, the playworker was in the room and didn't even come on either occasion and talk to either of mine. Unfortunately they were not of the cute and cuddly, compliant , will sit and draw variety

I thought the principle of playworker was great, and thought she'd be really helpful and understanding on the phone, - but I think she's going to get in the way of ds' compliance on the day now.

DD2 had a anathetic in hopsital for a minor procedure. I was very concerned about the procedure for doing this as I knew she would not be compliant. I ended up speaking to an anaethetist who was brilliant. i was able to have a really frank conversation with him about what would and wouldn't work which reassured me massively. I steered clear of the whole playworker thing as I knew they wouldn't understand dd and I also felt that was adding extra stress onto both me and dd! In the end a portable DVD player and DVDs, favourite toys and blankets and her current obsession - toothbrushes! sufficed to get us through it! I hope it goes OK.

Oh thanks cansu. I thought I might be being a bit precious, but you know what it is like with these things, the children can need quite specialist handling and I just can't trust strangers, even trained strangers to be able to get what I can from ds.

It has taken years of practice and even still I cannot make guarantees, but I just can't risk them messing it up.

I can envisage a situation where ds has lots of invasive procedures done to him that he has been warned about and putting up with it perfectly, until they decide they want to take his temperature under his arm, when I told him they were going to do it in his ear.

He'll have a full blown melt-down, sent his temp sky high and then be refused the operation.

I know. when we arrived dd2 was very annoyed to have the wristband on and she had to have one on her ankle. This really upset her as she just can't tolerate anything tight or remotely uncomfortable. The nurse tried to persuade her to cooperate and I knew this was making it worse so I said we have to be super quick - I am going to put on her DVD player and you need to put it on mega quickly without saying anything at all! She looked a bit surprised but did it. I know this is not an approach which would work with most ASD children but I know what works best with dd2. I also made sure that the surgeon, anaethetist and everyone who approached us knew about dd's needs! As a young child she was automatically towards the top of the list for the day's surgery but as an autistic child she was the first down there - which made a huge difference in terms of not having to wait too long for food and drink and also in terms of being ready to go home by tea time. Although I thought I had sorted all this out before getting there, the anaethetist was the one who insisted that she would be first. The surgeon initially had no clue that she was autistic and asked me loads of ludicrous questions about autism??

The playworker at Alder Hey was excellent both times we've been there. Pre-assessment my ds didn't appear to take it in but when we got there on the day of the op he clearly had. After the op ds had meltdown after meltdown and was very violent and trying to self harm. It was terrible to watch but the playworker was totally fab and got us a small sensory room that was totally padded (floor and walls) with nothing that he could throw or hurt himself with. We stayed in there for about 2 hours with ds before he calmed down enough to let anyone near him. The playworker, unlike the nurses, knew how to handle the situation very well. When we went back for the 2nd op the same playworker was on. We told her about the previous time and she rememebered and she immediatly got the sensory room ready for ds and we did the whole day in there.