Did you acquire your impairment as an adult?

Alex

Hi everyone,

We're developing a new online and print information product for people who have recently become disabled as an adult (rather than growing up with an impairment). The information covers common questions that people have around care, money, housing and equipment.

We have a draft version and we'd really like to get some feedback to see if we're covering the right questions and to see what you think of the answers! 

If you're interested, and acquired your impairment as an adult, please let me know below and I will send you a copy.

Thanks!

bam

I diagnosed with my disease as an adult.

Alex

Thanks @bam - I'll send it over. I'm afraid it's mainly UK specific (like stuff about benefits). It would still be great to get your thoughts.

bam

I'm sorry I didn't even think about that. I was just so eager I could answer a question I just blurted it out

Markmywords

Aged 40 for me @Alex . I'll help if I can.

Alex

Thanks @Markmywords and @Bam - I'll email you now. 

Still looking for more people if anyone else is interested. Thanks!

hedgehog45th

I was first diagnosed at 29, the diagnosis had taken 3 years to get though.

Angel40

Hi Alex, 42 for my partner. Am more than happy to help.

Alex

Wonderful! Thanks @hedgehog45th and @Angel40 - I've just emailed you both.

I've emailed you all the Word version - let me know if you need a different format.

MattStuart555

Would love to give you some feedback.... I'm sure it will be a great read. I'm hoping to learn something. Thank You. Matt

ShaunRobert1234

Would you send me the information.  On ESA due to on going health issues, Have had a lung transplant. DLA stopped. Deep in dept now.

nanof6

hi yes at 66 i have siaratic arthris ,divaticulitis, bilatral  sacrilitis, inpingment on both sholders, other things as  well, but the last year has been very hard, being in a wheelchair, getting abuse from some people loads of different things happen, its makeing me house bound rather than put up with it,im trying to find a holiday where no one nos me to get away for a break from all the ****, but disable holiday companys charge 3 times what it cost , ordanery holiday with a disable toilet no steps droped curbs is hard to find, but ive got the time to keep looking.when i got the wheelchair manual i thought it was temp,now ive been given electric wchair, been told nothing can be done for me, sent to the pain clinic and i feel rejected, tossed aside.

Alex

Thanks @nanof6, @ShaunRobert1234, @MattStuart555! I've emailed you all.

Shaun - This might not be the right information for your situation. We'd really like to help you.

If you have questions around benefits, you can ask our benefit advisor here:
https://community.scope.org.uk/categories/ask-a-benefits-advisor

We also have an excellent tool for checking what benefits you may be entitled to:
http://www.scope.org.uk/support/disabled-people/benefits/check

If you're feeling a bit overwhelmed or would just prefer to talk to someone, please give us a ring on 0808 800 3333.

Lynne53

Willing to help if I possibly can.  Still waiting for neurological diagnosis but certainly understand the problems that this and other conditions cause.

peterclark

I was diagnosed recently with RA.I would like help in 
Knowing how to claim benefits .
Also suffered depression since 1993,and now need medication for anxiety.

Sealegs

I was diagnosed with my illness as a adult.

mossycow

Yes please, would love to read draft. Sent Sam an email about similar and been seeing a need for this.

Do you need contact details or have you access to those?

Great idea, really pleased!  I can not believe how hard it has been getting basic info. It took me a year to understand what all this toilet radar stuff was... I called bus company 3 years ago to ask if disabled people get a discount, they said no... I found out 2 months ago I can get a free bus pass for me and a carer!!!  And I cant even say the letters ESA without feeling sick..,,

There must be a better way  

Seachy

I became disabled following a non fault car accident at 24 years old. Totally flipped my life and took me over a decade to fully come to terms with it and sort everything out and even longer to ask for support from adult social services as I was so used to reading all the negative stories

Alex

Wonderful - @Seachy @mossycow @Lynne53 @peterclark @Sealegs - you should all have an email from me.

Thank you so much for your help!

Lynne53

Yes I have received it, working on it.

MattStuart555

Broke my back playing rugby when I was 25, now 52. Suffer from pain almost all the time. Managed to get addicted to morphine which was medically prescribed, had to have a 4 week stay in the Priory hospital to over come this. Consequently the strongest pain killer I get to take is Paracetamol and codeine. Since this I have been diagnosed with chronic depression and anxiety which has been a total nightmare.  In the last year I have been diagnosed with osteoarthritis, this has totally wrecked my left knee and am now struggling to walk. I have been told by the NHS that I need a Knee replacement but I struggle to qualify as I'm too fat and too young. My whole life just seems to be a complete downward spiral. The above is clearly condensed version of events. But in short, my life is and has been a downward spiral since breaking my back some 27 years ago... if I wasn't such a coward I'd have ended it now :-(