As we suspected: independent.co.uk/news... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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As we suspected

MaryF profile image
MaryFAdministrator
9 Replies

independent.co.uk/news/uk/p...

MaryF

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MaryF
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SoulRebel-APS profile image
SoulRebel-APS

Hi MaryF, I know this message was not to me as I live in the US I was just wondering if it has something to do with the UK's version of disability? I am only asking out of curiosity. It's fine if you don't have time to answer nosy questions. I just wondering how it works in the UK for people who can't work. Have a great one!

MaryF profile image
MaryFAdministrator in reply toSoulRebel-APS

Yes a UK slant, I should have said that. MaryF

Barb4beachnit profile image
Barb4beachnit in reply toSoulRebel-APS

I'm in US. My records did but my records did not follow me from Texas as I requested. That was in 2011. The hospital here has me o record as having heart disease which I don't have. They should have APS. I told my doc but he just said that they make mistakes.

blizzard2014 profile image
blizzard2014

The same thing happens here in USA. They made drug testing mandatory in one state to try and kick people off of welfare and it turns out that very few welfare recipients are on drugs. They spent more money performing the tests than they made back by removing people from the rosters. It was hilarious. They had to shut down the program. All of the people collecting meager disability pay are not doing so because they want to. Even those who might be faking symptoms are still dealing with some serious issues, because normal people don't just wake up one day and say "ghee I want to live on 700 dollars a month for the rest of my life!" Why are they questioning all of these people? I have a disability from DVT and I used to make more than 700 dollars in one week. I had an easy job too. People are always going to get sick and become disabled. Why don't they focus on helping these disabled people start businesses instead of trying to take away their benefits. I wish someone would allow me to go to work with my legs elevated at waist level. I could actually have a real job. But the capitalistic consumer society we live in does not have any tolerance for disabled people. It's a shame!

SoulRebel-APS profile image
SoulRebel-APS

I have to say that I have been incredibly lucky as prior to becoming disavked I worked for multiple companies as a self employed individual. The first company I started with is the only one I still work for and I have been able to continue workibg with them, of course no where near the capacity I did prior. As I continue to get worse. They continue to be understanding. My work requires travel in my areas some places I goe to are 3 hours away, I now of course never travel alone and have to pay someone to go with me. But the travelling is getting to be to much for me. If I travek out of town for work I niw have ti get a room and stay over night. They have significantly increased the hotel reimbursement amount, because of me. They also are prepared to give me work that I can do from home so when I cant travel anymore I can still work for them. I don't make much but it helps me mentally to work I feel like less of a burden when I can ear even a small wage. I am extremely lucky to have these wonderful people who are so understanding and willing ti let me work with them forbas long as I can. I do not make much but it helps me. I know I will have to stop traveling SOON. If I go on a one night trip then I have to rest for a week or more b4 I can even look at the work which is completed at home. Every yr its harder and harder. I am truly blessed to have them.

MaryF profile image
MaryFAdministrator in reply toSoulRebel-APS

That is lucky. I work from home as a partner in the family business, so that is flexible to say the least and also around our children. MaryF

SoulRebel-APS profile image
SoulRebel-APS

That's great. I wish I could do that, have an actual business with my spouse because then we could earn more under his name. Im constantly terrified that I will loose my disability becuse my payments do NOT reflect my profit. As u know there are a lot of expenses when n business and big difference btwn what the comany is paid and its actual profit. We barley make it where we are I loose my disability we would be totally screwed financially! Have a great day

MrsMouseSJ profile image
MrsMouseSJ

Thanks for this, Mary. What to say? Well, so many things potentially, but none appropriate for publication on this Forum!

MaryF profile image
MaryFAdministrator in reply toMrsMouseSJ

Ha ha, yes... My mouth is zipped together. MaryF

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