diagnostic waiting times

Thanks for your response.  I am waiting for the government ombudsman to look at my complaint to the CCG about waiting times.  My MP said there will be a response if my complaint is "valid".  I suppose that will depend on the person looking at it knowing something about autism.

We have a difficult time accessing services if our GPS do not know anything about our condition.  It seems that few GPs have had training in autism. We can dream of a world in which parents can take their children straight to an autism assesment centre without having to try to educate all the professional service providers first. I doubt if the NHS would fund this as there are too many people who may be on the autistic spectrum.

There is a strategy written, just does not mean anything yet in this part of the country. Lots of discussion and good intentions, no money to fund perhaps.

i agree with you completely , however unfortunatley this is not the case and austism services (even more so for adults) are lacking in many areas.

 we have the austism strategy to work with and as i said above , this gives your local CCG a strategy that should be implemented  , GP's are not specialists but under the autism strategy all GP's and medical staff should have autism training (in many cases this has not been done).

 each CCG area will be at different stages in what has been implemented , the easiest way is to write to your local CCG's commissioning lead for autism (this is usualy the same commissioner as for mental health and learning disabilities ) and to ask them how many of the above points i posted have been implemented /are in place and how many are in the process of being implimented.

remember that the autism strategy is statutory, this means that your CCG has a legal obligation to make sure it is incorporated.

By definition GPs are not specialists.  They may not be expected to be entirely responsible for making all referals for autism assessment. Ideally there would be direct access to autism assessments. Some children with autism are resistant to having to see a GP to get a referral. If autism assessments could be carried out in efficient assessment centres (schools?) perhaps the cost could come down. Autism needs to be diagnosed early in life when it is easier to notice. People generally learn coping techniques which mask the autism so diagnosis of adults is perhaps more difficult and expensive.

ok i have an update they may help some people.

 i was told that my area had a waiting time of at least 12 months - so i did the following >

by law each CCG must have a commisoner that is appointed to deal with the autism strategy for the region - i asked to speak to them.

 speaking to the above commissioner i pointed out that the autism strategy of 2014 had 6 key points , this particular CCG was breaking a few of them- but i pointed out the following one to the commissioner>

 6 / ''need to commission services based on adeque population data''

i pointed out that if i was supposed to wait at least 12 months for a referrral then the above had failed seeing as NICE guidelines also say that a person 'suspected of having austim' should be seen within 3 months, therefore the service was failing as it was not based on the needs of the region with a 12 month+ waiting time.

the above - which is taken from the 2014 autism strategy is 'statutory' guidance , therefore CCG's have a duty to make sure it is implemented.

...result , the commissioner has paid my GP to send me elsewhere for an assessment.

 >so remember the 2014 austim strategy is your friend -the 6 key points are statutory guidance , therefore the local health bodies have a legal duty to make sure it is working under those guidelines , if it is not > make a complaint to the comissioner in charge of the autism strategy for your region and point out whichever key point suits your needs best.

the statutory guidance is as follows , if you are waiting a long time for an assessment then 5+6 are your friends when talking to your commissioner

1 /should provide autism awareness training for all staff.

2/ must provide specialist autism training for key staff, such as GP's and community care assessors.

3/ cannot refuse a community care assessment for adults with austim based soley on I.Q.

4/ must appoint an austim lead in their area.

5/ have to develop a clear pathway to diagnosis and asssessment for adults with autism.

6/ need to commission service based on adequate population data.

as the guidance is statutory, local councils and local health bodies have a legal duty to impliment it.

where the guidance says that a local area should do something, this menas that they will have to do it by law, unless they have a strong reason not to. lack of money will not necessarily be a strong reason.

hope this can be of help to people on here

Hi

I waited a year for diagnosis after the initial assessment and I think this is usual.

In my area there is no care pathway. You are given the diagnosis and thats it. I think this is usual too.

What treatment options would benefit you? Can you access them another way?

Hi. My son was referred for a formal diagnosis in march and we've heard nothing. He's been struggling now for 23 years. I've written to the clinic he was referred to myself at the beginning of july and still no response. I'm tearing my hair out waiting as he's suffering and I don't know how to help.

Hello pugs!

I was recently diagnosed, though it took quite some time.  And it was my second attempt at getting properly diagnosed.

This attempt started near the start of 2012.  After several weeks, I saw a psychiatrist for what I could describe as a preliminary assessment, to see whether or not to refer me for a full assessment with a clinical psychologist.  It was my GP who referred me to the psychiatrist.  The psychiatrist, in turn, referred me to a clinical psychologist for a full assessment.  So far, that had all occurred within three months.

Over a year later, I finally saw the clinical psychologist.  After a few appointments over no more than a few weeks, she told me she would be giving a diagnosis of an Autism Spectrum Disorder (ASD), and that Asperger's Syndrome was a good description in my case.  Nearly a year later, having recently received a summary of the assessment and diagnosis, I am still waiting for the full diagnostic report.

I don't know if this means the diagnostic assessment started within three months in my case, or not, though I suspect it does.

At first, about two and a half years ago now, my GP wanted to refer me to some sort of speech and language therapy team, or something like that.  This was despite the fact that I didn't really have speech and language problems as such.  It turned out that such a referral wouldn't be possible in my case, since that team only dealt with children.  So, instead, I was referred to a psychiatrist - which is what I'd been quite insistent upon in the first place, as it happens.

The speech and language team would have been the first step on the diagnostic pathway that my GP seemed to be trying to follow.  So, since I was referred to a psychiatrist instead, I suspect that that referral may count as the start of the assessment.  That would mean it started within three months in my case, even though I then had to wait over a year more for the full assessment itself!

As for who you should contact, I don't know.  Perhaps you could ask your GP?  If it's your GP you're supposed to contact, you'll already be there.  If not, I would imagine your GP ought to be able to tell you who you do need to contact.

I hope you do manage to get a quicker assessment than I did!