Published on 12, July, 2020
Hello everybody.
Please see a log of my journey below, towards trying to get an autism assessment, leading to the diagnosis that I believe I need for myself.. If anybody can advise what I do now, that would be appreciated. Thank you.
1st Sept - had GP appointment and asked for an autism assessment referral and explained my reasons why. GP clearly did not know how to refer me and after 15 minutes sat Infront of him, whilst he asked me questions, he then said OK here's a website go on it to self refer. The website was www.kirkleesiapt.co.uk which I later discovered was nothing to do with autism assessment referrals.
I then researched myself online and asked questions in an autism forum and found the autism assessment referral form online, I filled it in and sent it to ADHDandAutismService@swyt.nhs.uk and they responded saying the form is correct, but the referral form must be sent by my GP.
04Sept: I called my GP surgery and I explained all of the above and asked for their email address multiple times so I could email them the form they need to send off, but it wasn't given to me. The receptionist was very abrupt and came across disinterested. I was then asked to call back another day and ask for Margaret.
06Sept - I called and asked for Margaret but was told she wasn't on duty.
07Sept - I called and asked for Margaret but she was in a meeting so I left my number and requested a call back. Later in the day, I received a call back from Margaret and she had no knowledge of me or my requests and no idea why the GP would ask me to ask for her. I explained all of the above and she said a letter has to be sent off to request an autism assessment. To which I responded that I'd already completed the form and it had been acknowledged by the ADHDandAutismService@swyt.nhs.uk but they said it must be sent to them by a GP. So Margaret then gave me the GP surgery email address. I then sent the referral form to the GP email and Margaret agreed to send this on.
11Sept - I haven't had any confirmation that my referral has been requested, so I called the GP surgery and again explained all of the above and they said there's nothing they can see that a referral has been sent off and Margaret isn't on duty. The receptionist was the same person I spoke to previously and again was incredibly abrupt in her speech, no please or thank you throughout. When asking for my details it was 'what's your name'. I requested a call back so I can get confirmation the referral has been sent.In the meantime, I called the ADHDandAutismService and asked them if they'd received a referral for me and they said no. Later in the day, Margaret called back to say she has received my referral form and she has given it to the GP to check and send off. 11Sep 14:09 - Margaret called me again to say I had not completed part of the referral form and explained it was the section designed for a family member or somebody close to me to complete. I responded saying it clearly says that section is optional and I've chosen to not complete that section as I am being confidential with my referral and not informing family until I may receive an autism diagnosis. I was then told that the GP practice owner and another GP has said it will get rejected because it's not complete, so I again said its an optional section. The GP surgery then said I needed to come collect the form and complete it or the referral won't be sent off as it will get rejected. I then asked them to call the ADHDandAutismService to ask them if they would reject the form and the GP surgery then said they would send the form off but 'if it gets rejected we know why'.
I then immediately called the ADHDandAutismService myself and asked them if that optional section had to be completed and they said 'no of course not', we wouldn't reject the form because it's an optional section.
06Oct 15:02 - I received a call from the GP stating that I don't qualify for an autism assessment. So I said I don't understand, how can I not qualify for the assessment? And the GP responded 'that's what the letter says, for your mood I can refer you to mental health services' to which I responded 'again, I have no problem with my mood, no depression whatsoever. Depression and autism are two very different things'. The GP responded 'well you can have a copy of the letter if you like', and I said 'yes please' but before I could ask how I get the letter, the GP hung up abruptly without saying goodbye.
So now I'm left with no options and no reason why I don't qualify for an assessment. Basically the NHS are saying I don't have autism, without even seeing me in person.
The lack of knowledge and empathy from your GP practice is shocking but not surprising sadly. You've been put through so much unnecessary stress already. The referral process and procedures should be clearly communicated but what happens in practice is anything but clear.
The Nice guidelines state:
Consider assessment for possible autism when a person has:
one or more of the following:
persistent difficulties in social interaction
persistent difficulties in social communication
stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests, and
problems in obtaining or sustaining employment or education
difficulties in initiating or sustaining social relationships
previous or current contact with mental health or learning disability services
a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.
Perhaps you could check to make sure that the information sent by your GP clearly demonstrated difficulties within each of the required categories above. However the guidelines are somewhat vague and only say 'consider assessment'. I guess they could argue that they have 'considered' your referral for assessment.
It is extremely worrying that people are increasingly being denied access to diagnosis. It is already a postcode lottery. In North Yorkshire adults are now only allowed access to autism / ADHD assessment if they meet one of the following criteria:
I wonder if similar criteria are being used in your area.
This is so wrong, some GP,s have no idea of autism, from your interaction with your surgery, I would actually change surgery. I spent about 15 minutes with my a new GP, my old doctor had retired, the new younger doctor was fully open to autism, my son told me that he had most probably been to school and Uni with autistic people, autistic people are part of our society and becoming more accepted. (We shouldn’t need to be accepted) I know it’s not helpful to you, don’t give up, as others have said, draw all you evidence and go back, maybe get an advocate to help you, Good luck.
Thank you everybody for your comments. Just to be clear, the GP reluctantly did send of the form in the end, but the result of that from the autism service was that I do not qualify for an assessment and that is based on only 20% of all assessments result in a diagnosis..its worded like that on the letter I've now got hands on..
I've done every test I can find online, including RAADS-R, AQ50, AQ10 and all of them indicate strong chance of autism. I gave sent these to the autism service, but they have been disregarded.
I've now written to PALS.
Thanks again everybody.
That's a good idea :–)
You reserve the right to at least be assessed
It would be like them not checking you for cancer.
If they still won't help and support you with this then defos change doctors because you should be treated fairly and heard
You have a right to see documents relating to you, that includes referrals. What a stressful process. This annoys me.
Please consider writing to your GP practice, hand deliver it requesting to see the letter. If you have no success please consider raising a concern. If we dont raise awareness of what is happening, it will continue x
Take as many online autism tests (AQ 10, AQ 50, RAADS-R) as you can and send the results to your GP with a covering letter saying that the tests indicate that you have a high probability of autism and can they please refer you. Perhaps a hint that they are in effect discriminating against an at least potentially disabled person might be effective.
Sorry to hear that. You must be feeling pretty stressed out after all that, I hate how they shut people down like that, and it's horrible how they drag it out over weeks, it's terrible to treat anyone so rudely, let alone someone who suspects they have autism. It's bullying and it's totally unacceptable. You've done right to keep a timeline, note everything down, and keep doing so, keep strict records, times, dates, who did what. It sounds like best thing to do is write to the GP practice (the Manager - every practice has one and they deal with complaints) and spell out what's happened, let them know it's not acceptable, it is after all discrimination. I'd be polite but firm. You have a right to be assessed. I can't understand why they won't just rubberstamp the form. It's difficult when they have an excuse (i.e. the bit about family), you could explain in the letter (formally) that ADHD/Autism service have stated it is optional, and you have a right to privacy at this stage. Medical privacy is a basic right, including privacy from other family members.
If it's made formal in a letter - they must deal with it, as it's on the record. Whereas currently they are putting the phone down without any accountability or any record that they're acting unfairly. So uncaring. Perhaps also get back to the ADHD/Aut Service and let them know that the GP is refusing to submit and the bogus excuses they are giving. The service should be in a better position to understand your needs and perhaps intervene. At the very least they should provide something in writing that you can take to the GP to unblock the form (formally I mean that the GP can't ignore).
Sorry I can't offer more help, it's a tricky situation. Keep in touch, we'll try to help. And try not to despair. It's not over just because they falsely tell you it is!
Hi Dave
I'm sorry I don't have any practical advice for you but I did just want to say that I am incredibly sorry you are going through this.
When I approached my GP to ask for an autism referral they had me fill in a screening form - it was about 1 page of A4 and I did it digitally. I think it is basically a pre-assesment assessment to see if you even vaguely fit the criteria for progression up the 'chain'.
I'm sorry I don't know the name of the form (but someone here will) - can you ask for that?
It sounds like you've been messed around really badly and I hate that for you :( Take care of yourself x
Can you change GP surgery or is the surgery the only one nearby?