AAARRGGGHH ANOTHER cancelled appointment

[PeachyClair]

We haev just had sam's Paed appt cancelled AGAIN.

We had to canel in October
They cancelled december, gave us February
They cancelled february today, gave us April

I phoned almost in tears to complain and she told me 'confidentially' that the Dr doing the April surgery was leaving so that one would be cancelled too.

I can't (and ds 2 and 3 certainly can't- they have the bruises to prove it) imagine ANOTHER school holiday with SS refusing to help because of no Welsh DX. Sam has spent the last week stealing, hitting and being generally abusive.

Secretary to Consultant listened to my explanation of how Sam's care stooped when we left England and is chatting to PAed today to see what they can do (unlikely to be an appointment but maybe they'll write to SS? I don't know) and should call back before 5.

I give up though. We're never going to get anywhere are we? We're paying for Melatonin because we can't see the Paeds for a script, his BIBIC is paid for by a charity but we have to find the money after his next appointment, I didn't leave the house ONCE over Christmas apart from the immediate Christmas period when relatives were around as cannot trust Sam not to steal (have 2 younger kids to watch too). Plus Sam's sleeping is back shot, we need referral to a sleep clinic but how are we supposed to get that????

a welsh diagnosis? wtf? christ I know the welsh can be a bit weird but surely SN are fairly universal...

CAn you ring and request that if they get a cancellation in the meantime your given first refusal... get your gp to badger them relentlessly.

you have my sympathies, nohtings more annoying then continally cancelled appointments when your waiting on a dx.

God peachyclair no wonder you're pulling your hair out, what a farce

I agree with Emmalou, badger your gp to get another appt for paed. This can't go on. I really feel for you

If you have the energy can you not start to complain about this need for a SECOND (welsh) dx to all and sundry. One letter (don't believe in making too much work) copied to everyone you can think of. Head of SS, councillors, head of pct, consultant, head of the LEA, your original paed who made the dx (they don't like their dx being questioned). If resources are so stretched they can't give you an appointment they shouldn't be wasting money reinventing the wheel. You may find that if you complain to enough people this need for a 2nd dx disappears and it may be a quicker route to services.

oh MP of course as well.

Contacted MP a while back, got an e-mail basically saying hard luck. Got in a stress and joined a rival political party that day

Reactionary, moi?

Going to wait until Secretary phones then will decide what to do. Dh considering going tomorrow and just sitting in their office all day until they give him an appt.

local councillors are often more use ( or do all Welsh distrust anything English). Local press?? I would try contacting the paed who made the dx- they hate being questioned- if he got oin a strop could be helpful.

It gets better- they've dug out the letter the Somerset paed sent them and it contradicts the one they sent us. According to their letter, Sam DOES not have a dx and merely 'AS traits', too young for dx.

FFS. I give up, I have had enough and I cannot do this any more

Ring the Somerset paed- that's not helpful (but would explain why they're being so pig headed). Also send them in a copy of your letter- how is it worded in yours?

We can't find it, but it said Sam had definitely exhibited Aspergers. We were surprised as that's not what were told at appointment. It seems we may have been sent wrong lett

It seems that an admin error caused us to be sent wrong letter. (we're not stupid, we were trying to get further info but we moved week letter arrived). Sam now 'possible aspergers', will be taken off School Action as no DX, might lose BIBIC funding and is unlikely to be seen until end of year. We have been trying to get Sam seen properly now since he was 3 (he's six).

I'm sorry, please forgive me but too upset to do this any more. Crying my eyes out as we thought we were getting somewhere. How can they do this to us? Is it possible to get a private dx? I'll give up Uni and go back to work to pay if I have to.

oh bugger typed a reply then lost it.

That is shocking- I think you need to make some sort of complaint. Absolutely unforgivable. Do you remember what was said to you in the appointment? I'd talk to the NAS helpline 0845 070 4004.

How about BIBIC- they may have some advice....

I have e-mailed BIBIC, his keyworker usually with a client until 3.

Willc all NAS helpline but need tpull myself together a bit.

Thanks

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I'm sorry, I have no helpful advice, but I know how stressful Uni is, ao I cannot imagine having to cope with all of this as well xxx I hope you find the strength to continue this battle for Sam xx

Because we DO have an appointment there's little I can do apparently, but Secretary herself said they're re-working clinic system and this will be cancelled, at which point DS will go back to start of waiting list AGAIN.

This sounds so horrendous for you. I know nothing about special needs, but I am a medical secretary. If you phone the Somerset Paed's secretary she would be able to send you a copy of the letter they wrote to you as it will be on Sam's notes.

I would suggest contacting the PALS (Patient Advice and Liaison Service) Officer at your local Trust to see if there is anything they can do to help sort this mess out. It's clearly not as straightforward as just waiting for a first assessment. I would also contact the Head of Service in Social Services and explain the situation to them. It is also definitely worth contacting the Paed's secretary, giving her a mobile number and letting her know that you would come at short notice for a cancellation (and pestering her would be OK to - I never mind if patients do this because I understand that they just want to be seen). Sometimes we get cancellations with just a couple of hour's notice and it's a case of whoever we can get hold of first gets the appointment, and I always start with those who have been ringing in and showing motivation to come (I deal with appts for people with addiction problems).

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Dh has taken this on.

Dh has a temper.

Sam will be seen feb 26th.

I LOVE Dh.

Different clinic. They do acknowledge we have a problem with Sam. Oh thanks then. Could it be the assualts on DS3 (twice admitted to A&E), the strangulation attempts on DS2, last night Sam inserted a long pole (from ds2's puppet theatre) into ds2's mouth to choke him.

I was especially worried as DS3 (way too young yet ) exhiniting signs of AS too, nothing I can get confirmed but well, you know the stuff- extreme routine, only a few meals, doesn't talk yet either, doesn't like to be touche...... need Sam sorted first!!! I am actually still awaiting ds2's ear clinic appointment (DS2 has severe hearing loss due to glue ear).... maybe I should get Dh onto this too?

Thanks guys. Still very, very shaken but moving forwards again.

Hurrah for your DH...

does he do contracted sortings out...

Rollercoaster of a thread! Just read the lot and so pleased you've got that Feb appt.

feel that you have had to go through all this peachy, your DH sounds brill!