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Wait times for assessment and communication - shouldn't we be treated better?

Untoward

After I was referred for an ADOS I received no correspondence at all. After 2 months I emailed them to ask what was happening, and they said I was on a waiting list and should have received a letter. They said the waiting list was about 9 months and that they would re-send the letter.

That was over a year ago and I have heard nothing since then. And I still didn't receive the letter that they said they have sent twice.

Obviously there are high waiting times on the NHS in general, and mental health is worst of all. But for me I really hate uncertainty. I don't mind waiting, but I need to know what is happening. I hate not knowing, and I hate fearing like I'm suddenly going to have to go somewhere at short notice.

Shouldn't companies that diagnose and treat autistic people have better awareness and provide clearer unambiguous communication?

Parents

  • I 100% agree that better communication from autism assessment services would be a massive help. I too receive no communication unless I contact them, and I strongly advise you to contact them again to follow up. It just increases waiting anxiety and if you're trying to deal with other services too, having accurate information, or indeed any indeed any information, is vital.

    Just an update every 2 months on what the waiting list is looking like, where you are on the list, if there is anything you need to do, would be amazing. Even every 6 months, given the waiting list, would be useful. If anything, this would help prevent the people dropping mysteriously from waiting list issues. My friend moved GP for uni and was not informed that this would mean her autism referral would be automatically cancelled, she waited years thinking she was just on a long waiting list before contacting them and discovering she was no longer on their list and should have been seen 13 months ago. They hadn't contacted her to inform her she was being removed from the waiting list.

    Also the amount of notice being given is absurd. I was phoned out of the blue and given less than a weeks notice for my triage appointment and I don't have any reason to expect any different for my final appointment. This is hugely distressing for someone who likes to plan things in advance and it caused me a lot of turmoil. As said, they're supposed to be the experts in autism! Why shouldn't we have the capability of planning. 

    I am going to be checking in this week with my potential assessors because I need information to give to the MH teams (who won't properly deal with me because I'm the autism teams problem) and my future uni and because if I didn't contact them, I would never hear a thing and it is ridiculous.

    Please contact them again. You've been waiting longer than they said you would (as have I, also got told 9 months from triage originally and have been waiting a year since triage so far) so you absolutely have grounds to bug them.

Reply

  • I 100% agree that better communication from autism assessment services would be a massive help. I too receive no communication unless I contact them, and I strongly advise you to contact them again to follow up. It just increases waiting anxiety and if you're trying to deal with other services too, having accurate information, or indeed any indeed any information, is vital.

    Just an update every 2 months on what the waiting list is looking like, where you are on the list, if there is anything you need to do, would be amazing. Even every 6 months, given the waiting list, would be useful. If anything, this would help prevent the people dropping mysteriously from waiting list issues. My friend moved GP for uni and was not informed that this would mean her autism referral would be automatically cancelled, she waited years thinking she was just on a long waiting list before contacting them and discovering she was no longer on their list and should have been seen 13 months ago. They hadn't contacted her to inform her she was being removed from the waiting list.

    Also the amount of notice being given is absurd. I was phoned out of the blue and given less than a weeks notice for my triage appointment and I don't have any reason to expect any different for my final appointment. This is hugely distressing for someone who likes to plan things in advance and it caused me a lot of turmoil. As said, they're supposed to be the experts in autism! Why shouldn't we have the capability of planning. 

    I am going to be checking in this week with my potential assessors because I need information to give to the MH teams (who won't properly deal with me because I'm the autism teams problem) and my future uni and because if I didn't contact them, I would never hear a thing and it is ridiculous.

    Please contact them again. You've been waiting longer than they said you would (as have I, also got told 9 months from triage originally and have been waiting a year since triage so far) so you absolutely have grounds to bug them.

Children
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