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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

not sure how much longer i can do this :(

33 replies

lisad123 · 20/12/2011 16:33

trying to sort my lovely girls out. No one seems to be able to just help, do as they are meant to ect.
Today I have had to call wheelchair service but they cant do anything for another 6 weeks.
Trying to get hold of dd1 pead to discuss referal that has bounced back from psychology service, must have called 6 times, so thought i would call GP, but he wont help as said its the peads job. In the meant time dd1 is a emotional wreak, refusing to eat, leave the house and generally very unhappy.

Also had call from physio today to say that hospital team wont take referal from physio for new moulded inserts. They say it has to come from pead or GP, neither of which have anything to do with her leg problems, and dont know what she needs and both are hell to get hold of, as im sure you all know.

Trying to sort out my own hospital for widsom teeth removal, but no answer and I have hospital tomorrow for my bowel issues :(

Trying to call macmillian nurse to get dh last cancer cell count, but again no reply

im a mess, and so tired of it all. I know tomorrow i will be fine, and carry on but just needed a good rant, so please feel free to not reply.

OP posts:

IndigoBell · 20/12/2011 16:38

Catsdontcare · 20/12/2011 16:39

No usefull advice but just wanted to give some sympathy. Sometimes when it all get too much I allow myself one day to mope, fall apart and feel sorry for myself and then go to bed and try to get back on track the next day. No one can hold everything together all the time so indulge yourself

TheNinjaGooseIsARoasting · 20/12/2011 16:43

((((hugs)))) lisa, it's truely shit!! The system just seems to create more stress than the help it's supposed to provide, when I win the lottery we're going private

EllenJaneisnotmyname · 20/12/2011 16:45

((((hugs)))) Lisa. Sounds like everything shit happening at once. We're all here to hold your hand.

OnTheBen10DaysofChristmas · 20/12/2011 16:46

Rant away. Sometimes ranting online means that I can keep it going in RL. Sorry it's crappy today :(

Original poster

lisad123 · 20/12/2011 16:47

oh and no one knows when pead is back, they wont even tell me if shes on holiday or sick!!
psychology service called back a few mintues ago as i called and wanted to know why they wont take her.
They are saying its clearly a mh issue rather than an autism issue and maybe school can get a conseller to see her!!

OP posts:

Original poster

lisad123 · 20/12/2011 16:48

camhs say its a autism issue rather than a mh one, so not their team either. SHould add neither of these teams have met my dd1

OP posts:

EllenJaneisnotmyname · 20/12/2011 16:54

Can psychology and CAMHS not talk to each other? Silly me, of course not, that would be much too logical. Grrrrr!

cjn27b · 20/12/2011 16:56

Have you tried writing to the Patient Advice and Liason service detailing all the different teams lack of communication / action? Right now probably having to hassle yet another service is the last thing you want to do. Will only say this year they worked wonders when I was trying to deal with my Mum's cancer care (and in parralell DS's paed assessments). I got to the point of feeling like I spent half my time being an NHS advocate for people. The lack of continuity is care is totally exasperating and you have my complete sympathy. At times it's just too much.

Original poster

lisad123 · 20/12/2011 17:02

have dealt with PALS a while ago about dh cancer care and the terrible situation when they kept sending his blood via normal post to specialist hospital who needed to have it within 24 hours. This meant it took 6 months for them to even know his treatment wasnt working :(
They changed the whole system, and now everyone who ever requires this test, has their bloods sent via courier, who is booked as soon as you walk in for the tests Im glad i did it, but tbh, im too tired to do it all again right now

OP posts:

cjn27b · 20/12/2011 17:16

I'm not suprised, the situation you describe sounds difficult. I hope you get a break soon. Hugs.

coff33pot · 20/12/2011 19:00

Oh Lisad :( WHAT a day! and what a bunch of incompetant people!

I would seriously give camhs and the psychology service each others telephone numbers and tell them to battle it out NOW. Go to GP with list of what your DD needs referral for and just tell him to send the letter now.

Then go tell your MP to help you sort it! It is not fair to be left in limbo like this :(

ohmeohmy · 20/12/2011 19:44

Anyone would think they don't want to help. Hope you have got through this crappy day and tomorrow is better.

davidsotherhalf · 21/12/2011 11:39

hi have you heard of pals (patient advice and liaison service) i used these a few weeks ago. they sorted my dd appointment out and gave me the numbers of other ppl to contact to get everything sorted, they even phoned them and explained situation so i didn't have to start at the begining, depends what area you are in but they are great in dd's college area, give them a try and see if they can help you....(forgot to say they did this in 3hrs what i couldn't do in 3 months)

auntevil · 21/12/2011 12:01

Agree that PALS are usually brilliant.
totally agree with you re the stupidity of systems. our GP says that it is professional courtesy that once you are referred to a paediatrician for 'x' issue, that all issues surrounding 'x' are dealt with by the paediatrician and not the GP.
Where is the professional courtesy to their patients?
Lisad - when you were growing up, did you ever play a game - like monopoly or the like with an older sibling? I used to play with my brother - and each time we played the rules changed, what i did the last time we played wasn't right this time - basically anything so that he would win, and i would lose again (he was also always the banker! - or was that a euphemism?! ) . Does that remind you of the NHS now? It does me, i can never get my head around the 'rules' .

Original poster

lisad123 · 21/12/2011 14:23

Well today is alot better an thank you all for your support.
I now have new meds so hoping to feel better.
I went to hospital clinic about dd1 inserts and that is now sorted
Macmillian nurse called and cancer count results are ok
Friend has invited me for wine tonight

OP posts:

coff33pot · 21/12/2011 14:25

Now thats a better day! Enjoy your

WilsonFrickett · 21/12/2011 14:37

Och hen, come over here and I'll rub your head a wee bit. Better? Now go and get your . xxx

EllenJaneisnotmyname · 21/12/2011 14:40

Wilson, can you rub my head a bit, too? I just got a Christmas card and my usual John Lewis voucher from soon to be ex FIL, and it's made me all emotional.

WilsonFrickett · 21/12/2011 14:41

Oh Ellen doll, yes, over here you come, my love.

There you go.

Tough Christmas for you eh?

EllenJaneisnotmyname · 21/12/2011 14:43

I'll be fine, just needed a bit of sympathy to make me really bawl!

WilsonFrickett · 21/12/2011 14:48

Och feck the , for you too!

EllenJaneisnotmyname · 21/12/2011 14:51

Make it mulled, and you're on!

Original poster

lisad123 · 21/12/2011 14:56

Joins everyone in a mulled wine

OP posts:

EllenJaneisnotmyname · 21/12/2011 15:02

Thanks Lisa, sorry for the hijack.

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