Hi all I'm new here and am waiting for a diagnosis. Just wondering if anyone else had the same problems I experienced getting to this stage.
I went to see my gp armed with a printout of the baron-cohen Aspergers test (scored 42/50). And told my gp I wanted to be referred. I was then told 'the NHS don't refer adults' (I am 37). I argued my point and told her that my suspicions of possibly having some form of autism were affecting my work and home life. She read through my test results and agreed to refer me although said that it may be rejected due to my age. This was 3 months ago. I have been chasing this on a regular basis and have been told numerous times that everything is fine and the referral has been made only to now find out it has gone to the wrong service and now has to start all over again. Have anyone else come across barriers from the NHS?
Hi Carly, I used to work in the NHS and it’s not unusual for referrals to go astray or to the wrong departments etc. I guess it’s run by humans so there will always be mistakes and seeing as how the medical profession is the biggest cause of early death, I guess they don’t do that many audits etc to see where they can do better, so mistakes continue to be made. You could be waiting another couple of years, depending on how the service is run in your area so I wouldn’t be holding my breath just yet. Most of the people working in the NHS do their best but yeah, mistakes still happen. Well done you for standing your ground though and getting the referral, there have been people on here who have been refused a referral.
Thanks for your reply blueray. I work for the dwp so can more then appreciate human error!!! Just so worried that it was rejected which is why it was sent to the other service. I will push on with it though and if it is rejected I'm sure there is somewhere I can go to appeal it.
It won’t get rejected, with your drive, you won’t allow that - just keep on doing what you’re doing (keeping on top of it) and your assessment date will be here before you know it :)
Yeah, human error will always occur and until the nhs get a grip and start being accountable for their mistakes, unfortunately the mistakes will continue aplenty. It is said that in America, the medical profession kill more than one million people a year ~ can you imagine how many people would catch a flight if an airline had the same record!
But you’ll be fine because you’re in charge, you’re the boss and you’re not gonna let them not do what they are legally obliged to do. Just be prepared for a wait and like mine, it will probably happen much quicker than expected.
I approached GP to ask for a referal. I saw a registrar so she had to ask the senior GP's how to proceed. They responded with "there is no adult autism service in Norfolk and there's no point getting a diagnosis as an adult anyway.
I am not happy. I am taking it further and I WILL get the referal and assessment I feel I need and deserve.
Mmmmm I don’t know where my comment went
What I said was something like this ~ where I worked, in the Lake District, we had no adult autism team and we had to refer people to a team in Newcastle, which would not only take years, for the referral to be acted on, but once we made that referral, we couldn’t continue working with our clients so it was always a difficult choice to make as to whether we continued to support them or we made the referral. It was pretty heart breaking, for all of us, and neither option was ideal and I know that in Norfolk they struggle for resources as well. I turned a job down in Norfolk due to their lack of resources. It’s not their fault. They’re doing their best but with the way that mental health teams etc fund themselves now, they don’t always have enough money left over to fund an autism team, based on the needs of the people in their area. So you are still entitled to an assessment, but you may need to be referred to an out of area team. But yes, you are still entitled to one, absolutely and most non autistic people, can’t understand why an assessment is so important to us but in truth, how could they? The benefits of a diagnosis, from an autistic person’s perspective, isn’t taught to them and we’re almost like the first wave of adults coming forward en mass asking for assessments, so I think they’re getting a bit overwhelmed by it all and the gp’s will have been told, that even if a diagnosis is given, there’s no support but there is other support. I got my first support via our local social services and my second support worker is from Autism Plus and I’m not sure, but maybe you can assess their support without a diagnosis. I started asking for support before I had my diagnosis.
Beaky8401 said:there is no adult autism service in Norfolk and there's no point getting a diagnosis as an adult anyway.
This is total nonsense for many reasons.
Firstly, if there is no provision for autistic adults in Norfolk, the local authority is breaking the law - the Autism Act of 2009 makes it incumbent on all local authorities to have a pathway from diagnosis to support for adults with autism. It is true that the provisions nowhere near meet the promises made by the legislation, but that is no excuse for an offhand refusal.
Secondly, whether or not there is a point to being diagnosed is not for a doctor or registrar to decide. There are many reasons why an adult might feel the need for a diagnosis.
Beaky8401 said:"there is no adult autism service in Norfolk and there's no point getting a diagnosis as an adult anyway.
There aren't any adult autism diagnosis services in Staffordshire either but I my GP referred me to a new service set up in the neighboring West Mids county instead. As others have pointed out they have to provide a pathway for all people regardless of their location or age. Once in the system it can take a long time too, from first approaching my GP to getting the written diagnosis in the post took 15 months for me but I've heard of it taking 2 or even 3 years. Keep persisting, you'll get there in the end but it really is a postcode lottery as to the service you get... good luck!
I live in norfolkand went to my gp in May 2017. After a couple of weeks he phoned me to say the referral had been delayed because he hadnt been sure where to refer me originally but now knew it should be ‘Asperger Servic Norfolk’ They sent me Aq, EQ, and RQ questionnaires within a fortnight. I completed and returned straight away. I then got a letter in July stating that my results show it is ‘highly likely’ I have asd and have been put on a waiting list for a formal assessment. It then went on to say I could be waiting ‘up to 18 months’ before I hear anything else. I tried chasing it up in March but their emails bounce back and their phones are rarely manned. It actually took a couple of weeks to get through to someone who told me that due to further cuts in funding she now cannot give me any idea at all of when I might get seen. So Trogluddite (see comments) is probably accurate in their opinion that there is no adult autism service in Norfolk at present. I have since gone private and got a diagnosis within 6 weekas of making that decision
If only I could easily afford to go private.
Norfolk appears to be in a right mess then. It's upsetting. It's not easy to just go out of area either with kids at school, husband's work and not having any childcare to be able to travel far from local area.
I know exactly what you mean. Honestly, I had one client who desperately needed the specialist autism support but at the same time, his life had become so chaotic that he absolutely needed at least some support but if you refer to the autism team, which could take years, you can no longer support him. What a dilemma!
Get it into your mind that you’re going to do this. Make the decision that one way or another, I’m getting this assessment. In fact, write it out, in a positive statement, how it feels now that you’ve had the assessment and you are much clearer and calmer in your mind. Just make the decision and do not allow the mind to throw up any objections, such as, you’re never going to get it, how are you going to get it, you haven’t got the money, and even if you did, you’ve got the kids and the husband to think about, and they’re more important than this. If you do that and stick to it, it will happen. I’ve already thought of an idea, which came as I was writing my comment. You could find out about private assessments, how much they are, where they are, are they appropriate etc and how much they cost. You could then write out what it would mean to you to get the assessment. I don’t think many people, outside of the autism community, realise how important the assessment is to us. And how could they, because it means something different to all of us and not all of us need one.
Last night, for instance, I was feeling heartbroken for my mum, thinking I know she’ll never go for a diagnosis, but then it occurred to me, she’s the only one in my family who has read up on autism, she’s still reading. Both of us know she is but we both also know that she won’t go for the assessment, but last night as I lay crying, I realised, she doesn’t need to, she’s learning all about her, quietly and gently, in her own way, in her own time, through reading the books I gave them and through me. She doesn’t need the diagnosis.
I needed it. To me, it was life. I had masked so well all my life, I no longer trusted myself. I had to know. I had to have the assessment. But the funny thing was, the magic happened after I had been to the doctors and asked for the referral, because for the first time in my life, even if nothing came of the gp visit, I had been brave enough to confront and stand up for who I thought I was. I wasn’t expecting that!
If you get all this information, and you explore your reasons for wanting the assessment, you could start a go fund me page to pay for it. That’s only one idea and I absolutely know you would get the money from a go fund me page, especially if other autistic people read it. We want the best for each other and if an assessment is important to somebody, then if they make the decision to have one, despite not knowing how it will happen (but with all the ways in which it won’t) it will happen one way or another. Either by a great idea you have or by some stroke of luck, you get the opportunity. My journey through the nhs system was smooth and happened quicker than expected, but I had a strong determination. Don’t give up. You could also go back to the gp surgery and ask where the nearest autism team is. You can get support with this, either through NAS or someone like autism plus. You don’t need a diagnosis to access support. They could also help you to explore other options and seek out the best for you, in terms of travel etc. Even your local social services are obliged to support you. I had a well-being officer from my local social services as my support worker for a while. Getting support has made a huge difference in my life. Even if it’s only somebody to talk to, who understands you or who is at least on your side.