No help for me

I've been trying to get a post diagnosis assessment, I only found out about them from being on here, I was never offered one when first diagnosed, I was just left to get on with it. I tried the group in North Wales that was supposed to help and they were useless, couldn't get their heads around my very low tech skills, didn't listen, gas lit me on one occaision and ended up being a human google pointing me towards "help" that wasn't even available in Wales. It ended up with two women sat at my kitchen table with a lap top showing two smart phones I could buy from my local tescos and this was after weeks of phone calls and emails around various agencies, I felt like a lost parcel!

On saturday I bumped into some collectors from the local mencap group and asked them if mencap could help me, they assured me that they would, so I emailed them and they can't and tried to send me here and to the above group that are a total waste of time and public money.

Now I feel, well thats that, no help, no interest, all the bodies that are supposed to help with ASC are closed to me apart from these boards. I am able to advocate for myself, so I could write to my Assembly member or MP or both, but can I be bothered? What do I expect them to do? The answer is nothing, the last time I wrote to my assembly member I had no reply at all and my MP did say they'd recieved my email, but the only action that was taken was to pass all my details onto to head office so as they could advertise at me.

Is there anywhere for an intelligent 62 year old woman to get any help?

Parents
  • Hi TheCatWoman,

    This is very upsetting. I was wondering if you know what it is that you feel that you want from a post-diagnosis assessment? Is there anything specific that we could help you with? (without mucking up anonymity)

  • Homebird thanks, I can't use computers in public places as they all have overhead strip lights and I can see the screen flicker in time with the lights and it gives me stinking migraines lasting several days. People tell me to sit by a window, but that dosen't help either, nor do screens in front of screens. Computers at our library are so ancient and the conectivity so poor that they often don't work and mobile reception is almost non existant. There is a woman who does help with digital stuff, I went to her full of hope, only to be disapointed, she didn't want to listen, didn't seem to get that autism and learning difficulties make an impact, there was nowhere private where we wouldn't be distracted by other library users and there are strip lights in there. She didn't seem to understand that I have no idea where to begin on even buying a phone and suggested I go to any high street phone shop and ask for thier advice, she couldn't get her head around the idea that I've tried doing that and got nowhere. I said to her these are sales people, their job is to sell you the most expensive phone in the shop, not to help you buy the best one for your circumstances. We left it thst I would come bsck to her when or if I get a smart phone, she doen't think I need one as I wouldn't use it and I don't want one but feel incresingly like I have to have one as so much stuff is don't on them now. She couldn't seem to get her head around the idea that I wouldn't be joining social media apps and sending photos to everyone I know. She was a bit bit dismissive about my ability to crash things too, she just looked bored.

    Mark, not knowing what one entails or what help is availble I can't answer that question, I need one to one help with digital stuff and I have no family that can or will help, they either avoid it all together or tell me several ways of doing things that I get muddled and can't remember anything, or I do try and get it mixed up and everything gets even worse. Because of my memory problems I don't remember even simple digital tasks, liike I know I've done C&P countless times but I can't remember how to do it and even worse was losing a load of my disertation a few days before having to hand it in.

    Could anyone tell me what a post diagnostic test involves what does it look for and what does it help with and how does one get one.

    Is there anything specific for helping older people?

Reply
  • Homebird thanks, I can't use computers in public places as they all have overhead strip lights and I can see the screen flicker in time with the lights and it gives me stinking migraines lasting several days. People tell me to sit by a window, but that dosen't help either, nor do screens in front of screens. Computers at our library are so ancient and the conectivity so poor that they often don't work and mobile reception is almost non existant. There is a woman who does help with digital stuff, I went to her full of hope, only to be disapointed, she didn't want to listen, didn't seem to get that autism and learning difficulties make an impact, there was nowhere private where we wouldn't be distracted by other library users and there are strip lights in there. She didn't seem to understand that I have no idea where to begin on even buying a phone and suggested I go to any high street phone shop and ask for thier advice, she couldn't get her head around the idea that I've tried doing that and got nowhere. I said to her these are sales people, their job is to sell you the most expensive phone in the shop, not to help you buy the best one for your circumstances. We left it thst I would come bsck to her when or if I get a smart phone, she doen't think I need one as I wouldn't use it and I don't want one but feel incresingly like I have to have one as so much stuff is don't on them now. She couldn't seem to get her head around the idea that I wouldn't be joining social media apps and sending photos to everyone I know. She was a bit bit dismissive about my ability to crash things too, she just looked bored.

    Mark, not knowing what one entails or what help is availble I can't answer that question, I need one to one help with digital stuff and I have no family that can or will help, they either avoid it all together or tell me several ways of doing things that I get muddled and can't remember anything, or I do try and get it mixed up and everything gets even worse. Because of my memory problems I don't remember even simple digital tasks, liike I know I've done C&P countless times but I can't remember how to do it and even worse was losing a load of my disertation a few days before having to hand it in.

    Could anyone tell me what a post diagnostic test involves what does it look for and what does it help with and how does one get one.

    Is there anything specific for helping older people?

Children
  • Is there anything specific for helping older people?

    Have you tried Age Concern, or maybe Saga? There are charities out there for age-specific concerns. They might be more understanding of your IT level and be able to recommend appropriate things. Could you attend the course if they turned the overhead lights out? So the only light was coming from the computer screen?

    My mum has sight problems and couldn't get to the shops to find a landline (a few years ago now) and her Occupational Therapist through social work helped her with that, but they probably wouldn't go as far as mobiles. I bought it for her, but the OT did the figuring out which was best.

    Thankfully most places are changing fluorescent tubes in favour of LED panels which produce a constant light, hopefully more options will be available to you.