• Replies 5 replies
  • Subscribers 6 subscribers
  • Views 708 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

After care

Hergé

I was assessed last year at the to the tender age of 53.

My assessment came about as a result of someone finally questioning why my life long anxiety and depression were so resistant to treatment.

I was referred by the secondary mental health team who seemed to jettison me as soon as I received my assessment appointment, not the diagnosis, just the initial Obviously my depression and anxiety had been magically cured by this news. I was told to self refer to MAIN who had the autism "after care" contract but I couldn't do that until I actually received my diagnosis, which I received just prior to Christmas. I applied and was put onto their waiting list, I received an email three weeks ago stating that I'd been assigned to someone and they'd be in touch in a couple of weeks. Yesterday I received an email stating that they'd lost the contract for my health care area and I'd no longer be seen. The new organisation called "the daisy chain project" takes over in June.

My GP was made aware of my diagnosis but hasn't been in contact .

It's all really frustrating, I don't know what I was expecting but it should be better than this .

Sorry for the rant.

Parents

  • Hi Hergé - that's terrible.  I'm not sure you will hear from the GP - they ain't proactive in my experience.  You could ask PALS to see what they advise, perhaps contact your GP and voice your concerns, then if no progress make a complaint.

    Good old NHS - why people love it (how it is)  is beyond me

  • in reply to Jalapeno

    I think some believe that they should love it and support it blindly, regardless of how inept it becomes due to underfunding, staff cuts etc.

    It feels like it's a mix of staff who want to do more but can't because their hands are tied so they just do their best with what they can, and other staff who are so burnt out that they're beyond caring enough to do the job well.

    Either way isn't great for the patient. Pensive

    As far as after care post diagnosis goes there seems to be very little. Have a leaflet, off you go.

    I've found that charities are the best resource, and of course forums like this. Blush

  • in reply to Deleted User

    It does seem as though you get presented with your assessment report which details all the things you struggle with and........ No, that's about it really, off you Pop.

    I really (foolishly) thought that some special feature may have be made available, someone with actual experience of dealing with autistic people and not someone who'd read  few paragraphs or attended a lecture. You'd think since we exist in apparently growing numbers that some formal assistance and follow up would be forthcoming?

Reply
  • in reply to Deleted User

    It does seem as though you get presented with your assessment report which details all the things you struggle with and........ No, that's about it really, off you Pop.

    I really (foolishly) thought that some special feature may have be made available, someone with actual experience of dealing with autistic people and not someone who'd read  few paragraphs or attended a lecture. You'd think since we exist in apparently growing numbers that some formal assistance and follow up would be forthcoming?

Children
  • in reply to Hergé

    I remember writing at the time, it felt like you are given an instruction book on autism, when you open it every page is blank.

  • in reply to Hergé

    I agree. I think it's still very early days in the way of awareness and support for those of us with ASD/ADHD etc. In some small way I'm grateful to be a part of this awakening period where we learn more all the time, but it's also very frustrating that the services we need when times are tough simply don't exist yet in any large or accessible number, and we mainly have to rely on charities, community groups, understanding friends/relatives etc, while being invalidated by people 'in charge' who are still very ignorant of the many different ways autism can present.

    My hope is that it will improve in time, but I think most of us here won't see that in our own lifetime.

    We can be here for each other in the mean time. Purple heartpeople hugging