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Original poster

well the worst (for us) has happened. I feel dead.

39 replies

hereidrawtheline · 17/07/2009 11:19

was drafting my complaint to the chief exec of the hosp DS has been involved with and I received the post. had a letter from the pead he is with saying she has transferred his care to another hosp trust. that's it. we're starting over. I think I am done now. this is why we've had no appointment or return calls etc. no cahms. nothing. its all over it isnt even in the same trust now. they officially wiped their hands of us and all the waiting and agony in the last year was for nothing.

OP posts:
trace2 · 17/07/2009 11:23

so sorry hugs but dont give up i dont know how to help i think some one will soon who knows?

just dont give up!!!

Original poster
hereidrawtheline · 17/07/2009 11:26

it isnt in my nature to give up but i think i actually have.

OP posts:
5inthebed · 17/07/2009 11:28

Please don't give up. Did the letter say why they have handed it over? Still write the letter though.

Original poster
hereidrawtheline · 17/07/2009 11:30

says my gp now falls under the other trust. i phoned gp to ask they said no it is very firmly still in the same trust and anyway they said that would not be a reason to interrupt continuity of care.

I cant do it anymore.

am supposed to leave to collect ds from school party in 10 mins and am waiting for dh to call me he hsa to coem home from work i think i am really gone this time. i mean i feel gone, vacant. i feel dead and done.

OP posts:
FabBakerGirlIsBack · 17/07/2009 11:31

Oh love.

Where are you?

What do you need?

Original poster
hereidrawtheline · 17/07/2009 11:32

near colchester.

i need to go to sleep and never wake up again. dont worry i am not literally suicidal my obligation is too much for that. but i am in the twilight zone i just cant anymore.

OP posts:
FabBakerGirlIsBack · 17/07/2009 11:34

I don't know where Colchester is.

Please call someone and get someone round to support you.

Original poster
hereidrawtheline · 17/07/2009 11:35

north essex

i have to leave to get ds in 6 mins and i dont know how i will manage the walk there and back and the functioning bit

OP posts:
Original poster
hereidrawtheline · 17/07/2009 11:39

am in floods of tears now

dh called back he is coming home

i have to leave now to collect ds i dont know how i am going to put one foot in front of the other.

OP posts:
ksld · 17/07/2009 11:47

Can anyone else bring ds back to you? Call and ask someone.
Then just let yourself havea a good cry and let it all out. Really scream and shout. Then you just have to put a brave face on for ds when he gets home and stick him in front of TV? (Sorry don't know your full story but couldn't leave this unanswered)

FabBakerGirlIsBack · 17/07/2009 12:25

I am back now.

Not much use as crying but just want to offer support.

juliaw · 17/07/2009 12:33

Agree get it out f your system. Then...

Still write the letter of complaint to the first Trust and insist that as part of putting it right that they ask the second trust to see your son immediately without any further delay - tell them you want a full investigation into why they have failed your child.

Ring up the new Trust and explain what has happened - speak to their PALS if you can't speak to the new Paed's secretary. Tell them how low you are and that you can't be stuck in a new queue. You need help now.

If your GP is helpful ask them to ring the new Trust and speed up an appointment.

Email your MP.

Do you have social services help? Any respite? Homestart?

Original poster
hereidrawtheline · 17/07/2009 12:33

fabbakergirl why are you crying? are you ok? hope so.

am home now with ds and dh b ut my arms are full of cotton wool so cant type. going to just lay down.

OP posts:
FabBakerGirlIsBack · 17/07/2009 12:37

Just being stupid.

DS2 left playschool today.

Try and rest.

troutpout · 17/07/2009 12:52

HIDTL ...you poor thing
I remember that your ds was waiting for assessment...and that he have no dx atm ..is that right?
Phone up the new trust and ask where you will be in the queue. I can't see how you can be put to the back of the queue i really can't
I remember your posts about your boy not sleeping and how knackering it all was.You cannot carry on like this.
Can you phone social services and enquire about respite care? You really do need more support. I'm guessing it was the thought that he was soon to be seen that you were clinging to and it was this that was keeping you going.No wonder you feel so knocked out by this latest setback.

busybeingmum · 17/07/2009 12:55

This reply has been deleted

Message withdrawn

MojoLost · 17/07/2009 12:57

goodness hidtl! Nothing constructive to add, just wanted to let you know that I'm sending you positive vibes. Keep going. xx

Barmymummy · 17/07/2009 13:03

I am sooo sorry to read how very low you are, I so wish we could help you

I haven't got anything to add as the previous posts have said it all really but I am sending you all the positive vibes and strength I can muster.

Hang in there, and please please please take care of yourself...

notfromaroundhere · 17/07/2009 13:26

HIDTL what trust has it been transferred to? is it Mid-Essex as that's the trust I'm under and I could tell you my experiences of them.

Your DS sounds very similar to my DS1 and if you wanted to meet up I would happily drive up your way (my nearest town is Maldon). I have been struggling massively with DS1's behaviour recently and I am somewhat dreading the holidays.

I hope you manage to get some rest over the weekend.

madwomanintheattic · 17/07/2009 13:40

ok - get some rest and then write your letters, and do all of the above.

and then take a really really really deep breath and force yourself to think 'this is the best possible thing that could have happened. i can now form brand new shiny relationships with a new paediatrician and we can move ahead at long long last and get ds the help he needs. this is my opportunity to ditch the wasters.

find out which paed you will be/ have been referred to and call their secretary. burst into tears, explain what has happened, and ask for the first available appointment/ cancellation.

you feel unable to cope with it now as it has been a huge shock. but next week you will feel strong again.

sending you strength - have a quiet and restful weekend xx

TallulahToo · 17/07/2009 14:03

HIDL: I've not been on MN for a while so just came across your post. What had the hospital done for you to write the letter? Did you raise a verbal complaint earlier and then get the transfer letter after this?

Sorry you're having such a SH1**Y time of it. Saying that springs to mind is "Don't get mad (or upset), Get even!" If the letter came from a particular person then you have a (moral) right to request a face-2-face meeting with them. Would suggest that they may need reminding that you are real people and not just a file.

Sending BIG hugs but really sure you can do this....

TallulahToo · 17/07/2009 14:05

Just re-read madwita's post: Totally agree with the burst into tears approach - always a help to remind them that we are human beings.

jenk1 · 17/07/2009 17:08

HIDTL, had the EXACT same thing happen to us with DD,and know the frustration and upset it causes.

This was 2 years ago and this is what i did.

i was beginning to think i lived ate and breathed DD and her SN,so i decided i would write to the trust and complain (i knew it wouldnt acheive anything) and leave it at that, as i was starting to feel ill and family members were getting concerned about my stress levels, (not suggesting you are the same btw)

my letter to her paed was ignored.

since then,she has been under this new trust and we got a sort of dx in May this year after a few letters written to them after they too tried to fob us off.

im really sorry this has happened to you,its wrong just wrong and it makes me that they still treat people this way and add to the already stressful environment we are all in.

anonandlikeit · 17/07/2009 17:54

Hi HIDTL
i'm in Suffolk so not that far from you!
If there is anything I can do just shout!!!

Can you get a transfer to Ipswich hospital, we have had fantastic service, if they want tot rtansfer maybe they will let you choose???

Phoenix4725 · 17/07/2009 18:18

Hidtl

Dr B if its a female one is retiring very very soon. Im hoping to see if can get under ispwich mind im also going to demand referal to nuffield to

Im betting im not million miles away if you ever want to meet up for wine coffee and cake