Trying to get support autism from nhs following recent diagnosis

Used the template letter on this site to send to my doctors to essentially request a review of needs post formal  autism diagnosis last month. 

Drs called today, saying they know nothing about such things are it needs to go back to the assessment company (right to chose nhs) to action. But im already discharged from them as assessment has been done and they specifically put in report discharge back to gp for further action. 

Feel like im being fobbed off and nothing will be provided, but feel like i need some support now if im ever going to get back into a job again etc. Been medically retired for 6 months which has meant ive been even more socially isolated than usual. 

Felt bit low since diagnosis, relief but its like rest of the world doesnt want me to react and adjust to what needs i now know i have. Wife is supportive to a point but shes also scared of me changing so im trying to keep it low key around her which is hard when the person you love the most doesnt quite understand it the way you hoped. 

Hope everyones start of the week is going alright,

Parents
  • Hi there NinjaPanda85.  As you can see from the replies you've already gotten, you are certainly not alone in struggling to find and access support after your diagnosis.  It can be really frustrating and upsetting to feel like you are left to get on with things after being diagnosed.

    You may like to have a look at our page on Formal support following an autism diagnosis.  There is a lot of information on national guidelines, employment support, claiming benefits, etc.  We also have information on what to do if formal support is not offered or isn't enough.

    Our Autism Services Directory may also be of use to you.  You can search for services (for example, advice or advocacy services, or support groups and branches) in your local area.

    I'm hoping the best for you that you're able to access the support you need!  Also wishing you a wonderful week ahead.

    - Nicola Mod

  • It's disheartening to look at the help pages and see that one of the two places considered nearby to me is in Dublin and one is therapists, not what I asked for, the others are all clustered near the border with England and some are in England. I have written to the First Minister about the lack of provision here and hope he will have some good news.

    I think there's a specific problem for older autists as we're outside of the catchement for adult mental health services, but dont' need geriatric or age related services, its as big a cliff edge as for young people coming out of camhs or maybe an even bigger one as organisations like AGEUK, which is actually England only, devolved regions have their own branches, only you have to go right to the bottom of the page to find them, don't actually know what autism and any ND actually is and are totally unprepared to deal with it. Its like ND stops on you're 60th birthday

Reply
  • It's disheartening to look at the help pages and see that one of the two places considered nearby to me is in Dublin and one is therapists, not what I asked for, the others are all clustered near the border with England and some are in England. I have written to the First Minister about the lack of provision here and hope he will have some good news.

    I think there's a specific problem for older autists as we're outside of the catchement for adult mental health services, but dont' need geriatric or age related services, its as big a cliff edge as for young people coming out of camhs or maybe an even bigger one as organisations like AGEUK, which is actually England only, devolved regions have their own branches, only you have to go right to the bottom of the page to find them, don't actually know what autism and any ND actually is and are totally unprepared to deal with it. Its like ND stops on you're 60th birthday

Children
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