Wait time to hear something after GP referral

It took me around two years to go through the process, including conversations between my GP and the regional health authority around funding for me to go to another health authority for the tests.

In the end they sent me, but it took a long time, some of which was chasing down blind alleys. I was treated for A, proved unnecessary and unhelpful, tested for B, proved not to be me, but the test was performed by a doctor from the Aspergers clinic and she asked for me to be referred to her clinic, which helped a lot with the funding.

There was a lot of time spent with nothing much happening so I just got on with life.

In terms of trying to find out without being a nuisance I think writing politely to your GP after 6-8 weeks to ask if there's any progress would be proportionate and reasonable, and if you're told something may take 3-4 months then wait a couple of weeks longer than 4 months. It can be hard waiting like that but things will work through the system eventually.

i  also have ADHD and need to be referred to the ADHD clinic for an assessment-I was informed yesterday that I may have to wait another year before that happens which O find unacceptable, There is one possible way which my general state of mind and everyday living experience could be helped and I am expected to wait around like an idiot for all that time and await their judgement on what would be the best medication I am 60 and would like to start living a more manageable life before I get too old to lead it.

Therefore, if I were you  I'd check to see now if you have any other associated conditions now which may require an assessment before a treatment could be prescribed, everything takes so long it is maddening.. 

I had my screening appointment a month ago, they have agreed that I need a referral for full assessment. I went to see my doctor in November last year, initially I was told that I was too “normal” looking and I may not get an appointment due to cost. However he said, if I still feel I need an appointment to email him. 

I emailed him in December and I was pretty much on their back fo three weeks. In the end I had to go sick from work due to the anxiety and stress. 

I’m now just waiting for the full assessment. 

I would keep on at your GP and if no luck go through your MP. 

A lot may depend upon your age-the younger you are, the sooner you will be see, I had to wait around 13-14 months but I am 60 so it did not come as a surprise. there is a lot you can do to stave off any anxiety or satisfy your burning curiosity, I spent a lot of time on these forums reading what others had to say about their lives and it definitely helped me by revealing to me that the way I am is not simply a type of weirdness and chaos peculiar to myself alone but others out there-lots-who have very similar experiences and difficulties.

If your Doctor referred you for an assessment I believe that it is fair to say that he is probably of the opinion that you are indeed on the Spectrum-the NHS is cash-strapped and they would not have risked wasting their finite and precious resources merely to satisfy your curiosity.

You just have to be patient, it would not be unreasonable to ask about progress if 4-6 months have elapsed since your referral-you may still have to wait a long time but believe me, it is worth it.

 I live in Norfolk, and it was about a month before I received a letter saying that they had received my GP referral. It came with some questionnaires I had to fill in and return- AQ test, EQ test and one for a close relative (ideally a parent) to fill in, describing how I behaved as a child. After I returned them, it was another month before I received a letter saying they had received them, and based on the answers I was now on a waiting list for a formal diagnostic assessment of ASD. Unfortunately, here, the wait can be up to 3 years.

I am also finding the waiting difficult, and meanwhile I'm reading all the books I can find about autism, especially those written by autistic people who were diagnosed late in life, looking for similarities and helpful ideas.

My expectation was that there would be some sort of letter as like you said other referrals for things like minor surgery etc have had that in the past for me. My current plan is to give it until the postman arrives on Monday as then that will have been a month since the Drs say they sent it. A month seems like a good solid round period of time for me to start checking things are where they should be. I'm always wary of running off and nagging too quickly as I don't want to annoy people and put them in a "Right, F*** this guy" mood

Hope you hear something soon

I would have thought it would be more normal to get a letter than not-my experience with getting referred for other health issues in different places is almost always getting a letter to say your GP has referred you to such-and-such a service-but it does seem to depend on area. If you haven't had anything, I would contact them to check they've received the referral (if you know what service it is, but you could probably get this info from your GP if you're not sure) and whether you are on the waiting list. Personally, in such a situation I would want to check it had all gone smoothly; the last thing you want to do is wait around for months only to find out something has gone awry (the referral has been refused, or sent to the wrong place, or mislaid and not sent at all etc) and you could have known and sorted it out a lot sooner.

It took just over 3 weeks after I'd seen my GP for my referral to be processed and for me to get a letter to say I was on a waiting list with my local autism assessment service. Big sigh of relief at first...then back to feeling like I was in limbo not knowing when I'd hear. I definitely find it worse when you're expecting to hear something and nothing comes though; I've been told I should hear this month about an appointment finally (I rang in January and they said I was near the top of the list) so I'm anxiously checking the post every day and so far nothing, it is rather driving me crazy.

It never occured to me either until someone said why didn't you just email? 

Good idea thanks. I'll have a look to see if they have a general enquiries type address and ask to be directed from there. This kind of thing seems obvious once its mentioned but its frustrating how it often has to be pointed out to me

I know what you mean, its the uncertainty that bothers you. If you struggle with the phone maybe ask gp if they have an email address you could try? 

Thats a good idea, I think it was South London and Maudsley. It'll probably have to wait until my fear of not knowing eclipses my dislike of using the phone but its a good course of action. I don't mind a long wait for an appointment as I'm normally pretty patient as long as something is confirmed as happening at some point. Its the period of not knowing anything that eats at me if you know what I mean.

Hi it seems to depend on where you live as to how quickly you get seen, one thing you could try is finding out who you were referred to and calling them to confirm that they have received the referral, I personally have started doing this after my daughters gp didn't bother sending her referral. 

Don't be surprised if you have along wait for an appointment I know it's a different department but I just waited 14 months for an appointment with pain management but it really does depend on what's in your area

Hi! I’m in exactly the same boat as you, although I saw the gp in November rather than January. I’ve heard it can take upto a year to be referred.. I’ve since seen the gp for something else and asked again when I will hear back and he simply said “how long is a piece of string”. But you won’t get a letter to acknowledge you’ve been referred either, or at least I didn’t. I think it depends what area you live in too. Hope you hear back soon!