Hospital results taking ages/lost wwyd?

[used2bthin]

I have been worrying about the results of DD's eeg over a month now-the results were due to be in two to four weeks after the procedure. Yesterday we went in for dd to have a grommets op. I asked a nurse to bleep our consultants reg to chase up the results (the secretary told me to do this after I spoke to her last week asking if they were in0. The nurse came back saying something had gone awry and the results had got lost between the eeg department and endocrine who are going to be giving us the results so I may not get the results today. I am now really worried they have lost them lost them although she did say no they will be on the system somewhere. They lost an ecg result that we had to redo but this one she had to be sleep deprived and sedated it will be awful iof we have to repeat it totally unfair on dd.

Anyway now I am wondering if the results will be another month, day, week, what? whether we have to repeat etc.

WWYD?

Really could cry over this I was so desperate to hear and expected to last week, future is so uncertain at the minute and this may help know whats going on with dd.

Also DP was tested for being a carrier of her condition and the results of that are over a month lsater than the two months they said and her statement draft was due by the 18th and still no sign.

I would write an official letter of complaint, copying in all relevant parties. Late is acceptable (just), possibly lost is cruel.

Her dad said the same. I think I need to know whether it actually is lost lost though first. Just hate not knowing and am sick of calling and asking the poor (very nice)secretary, I rang three times last week! But am feeling so stressed over it I may well call again and find out what is going on. I will be so so upset if they actually lost it, the thought of putting her through that again due to incompetence.

if they can't find it today, it is lost. it doesn't matter if it turns up, they still lost if for a period of time. They have put you through the uncertainty of not knowing if you need to do another sleep deprived test!! I think it sounds outrageous and hope it doesn't happen to us (test tomorrow...)

usedto, have you tried PALS at the hospital? They may be able to investigate or at least chase on your behalf, try ringing them and if that gets you no where quickly follow up with a letter. Meanwhile keep trying the secretary, you won't be the only parent doing the same I'm sure, the nurse told you they were lost yesterday so that's more than a good enough reason to be calling again. Does your consultant have an email address you can email him directly on? It's really not fair to keep you waiting way beyond what they said the wait would be without damn good reason, same goes for dh's results.

as for the statement, have you spoken to the case worker to see why there is a delay? Give them a ring and ask, you can say you're worried it's got lost in the post, even if you're sure it's just late. You can also ask parent partnership to chase for you as well, I know they do here.

you'll get there usedto, just keep going

this is unacceptable! was thinking the PALS route as well. and definitely keep ringing the secretary. the louder you shout... well, you know.

we had a sleep deprived eeg for DD the other week and it was hell so totally feel for you. hope the grommets op went well though!

Thank you have never used PALs before despite the hospital losing various things before. I am worried as get on well with the team who cares for DD don't want to be labelled as a troublemaker but at same time am very upset! Would PALS be the same as making a complaint?

We have a parent support worker through parent partnership she is great so if it doesn't arrive tomorrow I will call her, good idea. I rang the officer last thurs and was told she was working from home-one of the things she was doing was DD's draft statement so it should be soon BUT I have a letter saying we'll let you know by the 18th!

Grommets op went very well thank you she was fine so quickly it was amazing.

Just rang the secretary again who I suspect is losing patience she said the reg isnt about but if she said she'll chase it up she will be. Now I really don't want to be a pest but I am so worried and at the moment have nothing more concrete than it will be on the system somewhere.

I think if everyone wasn't being so delayed with all this stuff it wouldnt feel so bad and I know that it won't magically tell me DD's future but I am so fed up now. I will ask if there is an e mail address I think actually as the actual consultant is great-the new reg is nice but seems to always be vague and thats when I actually get hold of her.

Meant to say pedalpants good luck for tomorrow. DD did well at the eeg it was hard though and she was quite tired after. I am sure your hospital can't be as bad as ours for results! (assuming its not the same one of course...!)

I am going to give it till friday morning and if no one has been in touch ring PALS. I really don't want to spoil the relationship with the team that we see most regularly but really can't keep making these calls myself I have been constantly edgy since last week when I thought the results would be in as have been expecting a call, that feeling that any day I could hear bad news is horrible.

pedalpants how did it go?

Just thought I'd update, the secretary called me yesterday (maybe she read this thread and the bit about me contacting PALS if I don't hear by friday!)

They haven't lost the results, she had them there and they have been analysed but she isn't authorized to give results. So the consultant will ring me next wednesday! Which feels like ages and I am worried that this means there are results to tell as had assumed that if the results said all fine then she could tell me that much but my nurse friend says no if she is playing by the rules she shouldnt tell either way.

Meanwhile the statement is in and DP got his results and isnt a carrier so some good news at least!

I work in a hospital and your friend is right, secretaries aren't allowed to give results out over the phone, even if everything has come back clear.

Oh good totalchaos I just panicked when she said that. Of course I don't even know what to hope for really as, if they are clear I think we will need to go for an MRI as we know something is going on. But obviously don't want scary results either.

Roll on wednesday.

hope all goes well usedto, pleased to hear things are finally moving. It's hard isn't it, such a time of mixed emotions.

Thank you and yes it is. I think I will be better when I know, if that ever happens of course! But the wait and worry is tough. Hope all is going well for you x

They came back. The consultant had been trying to call me last week they said. Knew it was not good as she would have been calling me from home. The EEg was abnormal so MRI v soon and neurology appointment next. Bit shell shocked and worried its something awful.

sorry to hear this, I assumed that as it all seemed somewhat lax that all would be ok . hope she has the scan soon so you get some answers, rather than being left to worry.

sorry to hear that usedto. I really feel for you, the waiting is the worst bit by far I think she's still your same gorgeous little dd no matter what the tests say, I would say try not to worry but that's just not going to happen is it, will keep everything crossed for you

Thank you. I had a feeling it was bad news but thought maybe I was being paranoid. There is epilepsy in the family possibly too. Glad but worried by the fact we are being referred as urgent for the MRI.