Sorry about the verbage, I need to have a little rant:
Previously I posted in this thread
community.autism.org.uk/.../possible-aspergers-waiting-diagnosis
Our son has essentially been waiting for nearly 18 months to get an appoiuntment to be seen. We are on the waiting list to be put on a waiting list.
The issue is that our area had no S.A.L.T. to we could not be given an appointment for an A.S.D. assesment.
We were assured ons everal occasions that funding was now available and a S.A.L.T. would be appointed in January. THis came and went, and now we are in May and still nothing.
However, it transpires that one was appointed, and assesments were proceeding as of January this year.
However, I was informed that the referrals team are unable to make an appointment for my Son, as he was 'outside the cutoff' , and they were not allowed to make appointments for anyone referred prior to January 1st 2015. My son's referral was eventually accepted in October 2014 (having previously been rejected by the referrals team in March last year - on the basis that his problems were 'mainly behavoural' - this is despite the fact that no evidence gathering had been performed, so the only information they had to go on was a referral letter by our GP!).
Obviously this was shocking, and the staff were upset that they had been told not to refer people too. I was given the number of our area's head of universal speech and language therapy, and eventually got an explanation from her.
Apparently, they fund S.A.L.T. through 'funding pathways' - comissioned by the Clinical Comissioning Group. A 'Pathway' had finished in March 2014, and after that, there was no S.A.L.T. provision at all in our area. The waiting list now stands at over 300 children waiting for an appointment.
However, the C.C.G. released a new funding pathway late last year, but it was decided NOT to allow anyone referred prior to December 2014 into this list, as it would 'create a perpetual backlog'.
In essence, people being referred today will be seen significantly before people referred last mach onwards!
The light at the end of the tunnel was that a separate 'pathway' was agreed, and they are now in the process of setting this up. We are talking about months rather than days, - and I was told that we could be looking at another 18 months before my Son gets seen.
Now, I understand that A.S.D. assesments take a long time, and waits of a year are not unusual. However, given we went to our GP in december 2013 to get a referral, and we are no further along than we were then, and have had to jump through hoops to satisfy an innefective NHS team, I cannot see how this is remotely fair!
We can't get an out of area referral as the head of S.A.L.T told me that the C.C.G. would reject the funding request as they have just agreed to fund this fresh pathway.
We also cannot get our son re-referred by our G.P. to get him into this 'pathway' as he is already known to the referral team!
We cannot afford private assesment, and have been advised by the NAS helpline that this is not their reccomended path as many authorities do not recognise these diagnosis.
All we can do now is wait. Our son is 6, and will be 8 before he has any hope of being seen. We need to be thinking about secondary school by the time he's in year 4, and a diganiosis is essential with this!
We have now drafted a letter, with the support of our Son's school, to complain to the local PALS team. As you can tell by my wordy rant that I am furious at the mishandling of this, and the other detail is that we have had no communication from the NHS over the status of our Son's referal at all. All this information is gleaned from our own investigations and enquiries! Our GP has been about as useful as a chocolate teapot, having lost the referral once, and then sitting on it for 6 weeks the second time!
Does anyone else have a similar experience or have any advice?
