Waiting lists - is it like this everywhere???

[MINIBondGirl]

My son has been on a waiting list for about 6 months for assessing for an ASD. We have just been told that the waiting list is at least 2 years from this point. Is this the case everywhere else?

Also every time I speak to someone (in the medical profession) I get the "are you sure you want a label" speech. No I don't want a bloody label - I want a professional medical diagnosis of my sons condition so I know best how to help him. Is that so hard to understand or is it a case of trying to cut down the list.

I know I'm starting to sound a bit bitter but we've been chasing this for over 5 years now

We have been waiting for 5 months for asd assessment and apparently we are not even on the official waiting list yet!

I think it is, its has taken me 10yrs to get my ds diagnosed and 5yr for my dd. and im still waiting on the ot referal for my dd that was supposed to have been done 17month ago

It's a 6 month waiting list where we are for an ADOS but if they don't achieve that timescale they just carry it out with 2 SALTs rather than a multidisciplinary panel so I decided to give it a miss. Can you afford to go private you could be seen in a matter if weeks rather than years?

Took me 18 months from start to finish to get dx from the point of referral.

Our paed told us that the waiting list is so huge that they are not taking on any new assessments onto the list until they have cleared the back log.

We were told 2years too. It took phone calls every day to get it down to one year and then continued phone calls every day after to get it to 6 months.

However, I'd waited a year for a referral in the first place.

As it happens I got one in 4 months because I went private as our area provide no support without Dx. I subsequently found that the support the offered WITH Dx wasn't worth having but I wasn't to know.

5 months from start to dx here which is fab compared to some areas,but once you have the ASD label then your written off from SALT,OT ect...so thats why i think they are so quick to DX

We got a dx in 3 months, but later found out other hospitals in the same County had a waiting list of 2-3 years! Then when the government cut local authority funding they in turn stopped paying CAMHS and then in turn as they were not being paid stopped being involved in diagnosis so everything ground to a halt. Now the local hospital won't even hold a waiting list. We have been campaigning locally for a year including MP, local radio etc and keep being told we will have a diagnosis pathway soon. But even then there will be a 2-3 year backlog.
Often hospitals offer a first appointment quickly to meet NICE guidelines but then nothing happens so these waiting lists are not even being counted.
NICE guidelines on diagnosis came out last year and it is the commissioner who is responsible e.g. the PCT usually and soon to be GP commissioners. So you need to complain to them
You can ask your GP to send you to a different local hospital which might have a shorter wait.
You can ask the PCT to fund out of area diagnosis - ours refuses, but then possibly you can take legal action against that decision
You can also complain to the Health Secretary who has ultimate responsibility for providing a 'universal health service free at the point of delivery'
The other advice I would give is apply for a statement of SEN, if the LA refuses it (which they usually do for children without dx) then you appeal and they have to get evidence to defend the decision at tribunal, and that includes info from NHS. So it can be a way of pushing things on faster, but not that much faster.
If you have a local autism group get in touch with them the more parents who gang together on this the better. Hospitals haven't stopped diagnosing cancer or fractures so there is no reason to make our kids the easy target for cuts. try and get your local group to ask for a meeting with the commissioners.

dd was a school refuser at 12, and asd was suspected. She was seen within 2 months and dx. During the diagnostic proccess, I realised ds was also asd and asked for a referral. He was seen by a paediatrician within 6 months and had a formal dx after one year, When I accessed his records through a SAR recently, Ithe paediatrician had written in her notes the first time she saw him "miniicefflower has full blown AS". Why couldn't she say that instead of making us wait another 6 months!

I pleaded for an emergency assessment after DS had been on the list for 6 months. I explained that things were deteriorating at school and at home and we got the ADOS within a few weeks. This was about 1 year after the initial referral from paediatrician.