[coxy]

Hi
We are kinda matched (not met child's sw yet) with a one yr old with a genetic condition, trouble is my cousins daughter also has the same condition and over the past couple of weeks we have had conflicting information about whether they can mix etc, our sw said last nite what would we do if we were told they could never meet and i said we would have to turn this child down.

The child's sw is very keen to progress, she has even booked provisionally the matching panel for June, which is good news IF there isnt a problem with cross infection. We have asked to meet the childs paeditrician to discuss further but our sw doubts we will get to meet him before we meet the childs sw on 16th May.  Today we have insisted that we meet the paeditrician before we meet the sw as i dont want to meet sw and get hopes etc and then the paeditrician advises against the match.

Its such an emotional rollercoaster and i suppose in a way i am a bit annoyed that the childs sw hasnt researched this genetic condition very well. After all, our form f clearly states that my cousins daughter has the same condition and regularly comes to stop at our house and we take her out for days etc.

I am trying to keep an open mind but its very hard.

Do you think its likely that we will be allowed to meet the paeditrician first?

Julia x

 

[keemjay]

what a difficult situation..i can see why you want to talk to the paediatrician first and i think you should press for it, for the reasons you've given..i wonder if its not possible to meet you could at least talk on the phone
is there perhaps a chat site for parents of this condition where you could post a message and ask if they have any advice?

wishing you all the best, i dont envy your position

kj x

 

[coxy]

Hi kj

Thanks for the message, i did post on the forum for this condition and that unfortunately is where we are getting conflicting information so its hard to know who to believe. i will push to meet the paed first or like you say, at least speak on the phone.

Julia x

 

[ritzi]

for you

i've posted this message as a PM to you

ritz.

 

[everhopeful]

Hi Julia

Sorry you're feeling down, there's little wonder, just want to send a hug of support  .

I would definately push for an appointment, or alternatively, a phonecall with the doctor. Otherwise is there anywhere on web that you could gauge opinion from other adopters with same condition. Perhaps set up an anonymous persona (so we wouldn't recognise you) and ask advice from the medical people on these boards (I've done that before  )

I agree, it's unfair for you to be taken further into this, without the relevant information being available to you. How can you make a valid decision without the proper information and answers?

Hoping you get the answers you need, and quickly.

 

[coxy]

Hi ladies

Thanks for the replies

I texted our sw yesterday and asked to meet the paed before the sw and she said this wasnt possible as they wouldnt be able to release medical conditions of a child before placement has been agreed.

so i just dont know.......

my cousin spoke to her daughters nurse yesterday and said as long as they didnt have overnite contact or contact with each other if one of them had a cold/flu etc it should be fine, which puts my mind at rest but then when i posted on the website for this condition it was conflicting info like you say.

What i find very hard to believe is that the school my cousins daughter attends doesnt need to tell my cousin if there is another child in the same school/class with the same condition, so she could be mixing with these children every day and nothing has been said about it.

I really feel like dropping out, it seems that ss are just keen to place a child but dont really look into the problems it would be etc, they matched us a while ago with a little child who had asthma which wasnt practical when you have 2 cats and 1 dog!

Julia x

 

[ritzi]

coxy 

sounds to me like SW are being a bit 

many people speak with the medical bods for the child pre-matching.....it seems sensible that you would want ALL the info being matching panel - what else do they expect? 
if it were me (and i'm good a pi$$ing my SW off) i would go over her head and contact her manager to discuss this with him/her.....it's too important a decision for you and your whole family to make without speaking to the littlies paed (and SW should know and understand that  )

i think (from what i read yesterday) that the conflicting advice is based on what risk parents are willing to take - some say oh it will be fine, my child can mix and we'll deal with a problem if it arises - others say i don't want to take the risk and therefore keep the child from mixing. From what i read there is no RIGHT answer - just peoples opinions based on risk. The NHS advice of course has to be the opinion with the lowest risk otherwise people's kids might get sick and say 'the NHS didn't tell us this risk so we'll sue them now'.

i hope that helps - you could always ring that department at the hospital and a specialist nurse might be available to chat with you over the telephone today 

hang in there coxy - ritz.

 

[everhopeful]

I can't understand it personally  and I feel very angry on your behalf.

We'd already been "matched" with our newbie, when we were asked how we would react if newbie turned out to have a condition. We were asked to make the decision over a 2 day period (basically of research and soul searching).
We wanted answers before we were matched formally at panel, and although not protocol in our LA, the adoption medical advisor agreed to do an extra medical on newbie that would include bloodtests, so although we didn't meet the medic in person, it was arranged by the adoption SW that this be done, and the results to be given to us before we got to matching panel.
It was agreed by the SW's that we deserved to go into this with our eyes wide open, and all the information necessary to continue with confidence.
So I honestly do not understand why you are not getting the same support and help. 
Like Ritz says, it may be worth contacting a specialist medic independantly for some advice.

Good luck

 

[coxy]

Hi ladies

thanks for the replies and your support, like you have both said, we should be given more details before we are matched, i just think ss are so keen to get her matched that they are glossing over the medical issues. Our sw even said on Monday what would we do if we were told our little one and my cousins daugther would never be able to meet and we said we would turn the little one down and our sw seemed very surprised!  of course we would have to turn her down, i couldnt stop going to family events for the rest of my life, its just not practical.

I will ring dh later and ask him to contact our sw, ive left my mobile at home.

Julia x

 

[Tibbelt]

Coxy,
Have just sent you a PM honey. Sending you big 

lots of love
Sarah
xxx

 

[coxy]

I have just sent this email to our sw, dont think it will do any good but theres no harm in trying. She did say on Monday that she had a panel to attend yesterday and that she was sitting next to the medical advisor and so would speak to him about this issue, dh has just texted her to find out what he said and she replied that the panel was next Thursday!! how do you get Tues and next Thurs mixed up?

Dear.......

her sw or shortly afterwards. If the CF is going to mean that either child cannot mix with each other, we will have to turn xx down. It isn't an easy decision but we are hoping the paediatrician can make things a lot clearer and then we will be able to assess the situation before panel in June. It is good that her sw wants things to move quickly but we feel we are being rushed along and the CF issue is taking a back burner.

Unfortunately I have left my mobile at home today but Mark is contactable via mobile if you need to discuss further.

I do not want you to think we are being awkward, we just have XX best interests at heart.

I wonder if this will do the trick, she will probably come back with some reason why not.
Julia x

 

[everhopeful]

Julia
I think this is a good move. Hope you hear some positive feedback very soon

 

[sjm78]

Hi
Dont blame you for being angry seems very unreasonable to be expected to be matched before being allowed any info. We have been given a little info on a little one who has medical needs that we think are to severe for us to manage .We have requested further info and our sw said we could see a medical advisor if we want to no problems at all. I think it does sound like they are trying to rush you. You have to do what is best for everyone dont let them push you hope you get some answers soon.
Sarah

 

[coxy]

Hi Wigan two

is the medical advisor someone at the agency that you are with or someone with the childs agency? we havent even been told that we would be allowed to talk to a medical advisor. I will try and contact our sw today and ask her.

thanks
Julia x

 

[everhopeful]

Julia
In our case the medical advisor is the doctor who carries out all the medicals on children before adoption, she is part of the child's authority.

Hope this helps

 

[coxy]

thanks, have texted the sw and asked her if we can meet the medical advisor....i can just picture her now moaning cos i have asked her!!!

Julia x

 

[dawny36]

Hi Coxy,

thought I would add my tuppeny worth for what is worth.  We met with the medical advisor for our littly prior to matching panel and this is normal practice for the LA we were linked to, she was very open with us and answered  all our questions as best she could with the info she had even they are limited to what info they can get as gp's have to get written permission from birth parents!
She was also on the matching panel, she did say when we met her that it didnt guarantee we would be matched just because we had met up with her prior to panel.

From what I have read in your situation it seems a bit of funny way round to do things!? what if you were matched and then given info and then you had to back out how bizaar and what a waste of everyones time not to say the emotions you would have to go through.

Hope they see sense and good luck!

Dawny
xxx

 

[coxy]

well, the combined text and email seem to have done the trick, although she sounds pretty peeved off at us in the email.

this is her response.

I would argue strongly (and also on behalf of childs sw) the CF issue is taking a "back burner". In my view and indeed sws, xx condition is of the utmost significance and importance. During my last conversation with sw we discussed her getting in touch with the paediatrician and she said she would get on to it straight away, knowing how difficult it was "pinning down" the paediatrician. Panel in June was a rough estimate and clearly it will not be appropriate. Neither sw or myself would rush you into Panel without you having all the facts. It would not be in your interest and certainly not in xx.

Further, notwithstanding xx condition the LA has to assess whether you are the "right" family for xx in terms of her being a Looked After child.

shes changed her tune from last week then when she said we were the perfect family and how sw had pencilled in panel in June, talk about messing with your head!

We have arranged to meet our sw next thursday to see whats what and hopefully get some answers.

Julia x

 

[sjm78]

Hi
We have been told by our sw that our LA will use there own medical advisor and the childs LA medical advisor to get us all the info we need. Hang in there and keep asking .
Sarah

 

[ritzi]

coxy

they always say one thing then another don't they  covering their own  in case anything goes wrong.....

i would probably email back that prior to the LA assessing whether you are the 'right' family it might be an idea to know if it was even possible before lots of time gets wasted and hence the need to know from the paed........she sounds a bit  to me

hang in there 

ritz.