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

[hereidrawtheline]

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.

[hereidrawtheline]

busybeingmum your letter writing ritual is very impressive and didnt just inspire me it also cheered me up thank you

[lingle]

supportive vibes from Yorkshire

[anonandlikeit]

Glad you have found the strength to battle on, hopefully it will ultimately get you the help & support you need.
Don't forget be clear about what you want for your family.

Through all this battling don't forget to allow yourself some time for a break, you do sound exhausted (soory don't mean that to sound nasty). It is OK to take a day off from the phone calls etc, can you hand everything over to dh for a day & just take yourself off somewhere, do something just for you, even if it is to have a good cry, drink wine, retail therapy, whatever floats your boat really.

[debs40]

Sorry all this is happening. Looks like you are doing the right thing. MP's letters really get things going - even if it is just an enquiry on your behalf (my friend is a hospital manager and told me this!).

Good luck and don't feel too proud to get some support for yourself. You always sounds so stressed out (understandably so) and I always think you could do with a bit of time to just blurt all this out in safe, sympathetic, non-judgmental surroundings.

[moondog]

Glad you feel stronger.
Hang in there.
XXX

[FabBakerGirlIsBack]

I hope you get all you need.

Stay strong.

[hereidrawtheline]

hi there! thanks, I am better today as in not like a zombie.

I am going to stick with mid essex because that is the trust DH works for so I am hoping it will get us some special treatment or at least some basic respect which clearly we have been lacking.

I've only been awake for 20 mins and my eyes are really fuzzy I cant see a thing.

I have made the official complaint over the phone, this weekend I have to write it all up as well and email it to the chief exec. I am also complaining to the MP and I put the complaints dept over a barrel just out of spite. She asked me if the standard 25 days to address complaint was sufficient and I said no I want 16. And I said if I Wasnt happy with the result I would write about it on my blog. But I said the MP was being contacted regardless.

Use a well worn phrase "not being funny" but I have been nice and compassionate to their needs for a year and they have screwed me time and time again and left my family in the dust. So right now - fuck them. I will be calm and in the right but I wont give them any leeway. MP here I come. They forget they are a service provider.

[lottiejenkins]

I second anons praise of Ipswich Hospital! They are fab there! Dont give up !!!

[notfromaroundhere]

How are you today, Hereidrawtheline?

[moondog]

Here, you can still go ahead with your complaint.
You can indeed also forge a new relationshio and wipe the slate clean.
Please contact your local SNAP/Parent Partnership.They can help support you emotionally and practically through this.

[BriocheDoree]

Hugs. Look after yourself.
Brio
x

[Phoenix4725]

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

[anonandlikeit]

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???

[jenk1]

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.

[TallulahToo]

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.

[TallulahToo]

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....

[madwomanintheattic]

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

[notfromaroundhere]

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.

[Barmymummy]

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...

[MojoLost]

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

[troutpout]

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.