Esa: Make people aware of LUPUS.let's fight dwp and... - LUPUS UK

LUPUS UK

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stefgilbert profile image
10 Replies

Make people aware of LUPUS.let's fight dwp and the government

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stefgilbert profile image
stefgilbert
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10 Replies
Donnygirl profile image
Donnygirl

They dont give too hoots about us.... and they make things sooo difficult my letter from them ssays we reconise you have a disability and illness but still no longer eligible...

lillyanne profile image
lillyanne

Well I for one think the benefit system at this moment stinks more than last weeks leftovers! If you can move, you can work. and that's about it really. Atos are a money making company that has targets set to get as many people off benefit as possible, by hook or by crook. I have read and experienced the untruths told by these 'medical examiners' but somehow, they can get away with it. I would be happy to support any campaign to raise awareness of what is actually happening to disabled people in this country today.

Donnygirl profile image
Donnygirl

I have been looking at the fb page fightback. A piece on there talks about atos and medical examiners. It talks about one guy finding out that his examiner was a midwife and had no experience with his problem. It disgusts me to think that they can get away with it. And not be held responsible for the problems they cause :-(

katerowley profile image
katerowley

also be aware what happened to me last week.

I'm off jsa now on esa for at least 6 months, haven't done any of the tests yet, but still have to attend the work programme till 30/8, and they have given me a provider with lupus, you think great someone that understands No...... she's young enough to be my grand daughter, and last week she gave me the dialogue, I've had it since a child, we will get you back to work full time, able to walk for miles,( i have systemic sclerosis) lift heavy weights ( i have skeletal muscular syndrome) and I'm just looking at her like what tree did you fall out of.

field profile image
field in reply to katerowley

Everyone experiences lupus differently. some people only have mild symptoms. When I was in my early twenties I had my first lupus attack. I didn't know it was lupus at the time and I was really sick with it for about six months. After six months I gradually started to feel and after a year I was completely back to normal. I went back to work full time and lived my life completely. When I was thirty four years old I had another attack, which completely knocked me for six. Unlike the last episode I have never gotten over that attack and am still struggling every day, Just getting out of be in the morning is a major effort for me. I tried to continue working and struggled for a while, but I just became really ill, so I had to stop. This young child with all her vigour and vim probably doesn't understand that some people feel like complete crap everyday with their lupus.

Lupo30 profile image
Lupo30

What medication is your advisor on? Tell her we all want to know. How annoying.

katerowley profile image
katerowley in reply to Lupo30

god knows, she just told me she was on 15 tablets a day.

she showed her ignorance by wanting to know why i have to still see a cancer doctor for 3 yrs ( had a stage 3 melanoma last year which if it comes back will be liver or stomach).

I am like field, i have worked most of my life, my last employer was like hitlers sister with a whip, i had to have a week off with a bad attack of pleurisy when i was coughing blood, i was dragged in the office when i went back for having a week off, and their reply was, r u sure you really couldn't come in. I have lost £31 a week going on ESA.

pattismith profile image
pattismith

No point comparing stories and moaning - what we all need to do is unite and stand together for what is basically our rights, just because we are ill and disabled doesn't mean we can just roll over and be forgotten . When we were fit and able we all worked hard and paid into this system , so are we just going to gripe and let them treat us like 2nd class citizens ? Lupus warriors are far too strong for that are we not ? Lets all help each other with positive advice and help to be able to claim what we are worth , yea ?

katerowley profile image
katerowley in reply to pattismith

I am sorry "i seem to be moaning" in your eyes.

all i can say i am glad your not my doctor or i would commit suicide.

pattismith profile image
pattismith

Sorry if thats how it came across, wasn't how it was meant to. Over the last 3 years l have found so many people who don't understand our illness yet seem to belittle us and tell us what we are capable off ! What l was trying to get across is we all have to stand together and not accept this kind of treatment and get as much information possible to be able to stand our own ground. Seems to be the only people who do understand us is fellow sufferers out there. Again sorry if l upset you, l was really trying to support you by saying we all have to stand together and help each other fight and stay positive :) Worded wrongly - of course we need to compare stories and we all need a moan now and again, we are all there to help each other along the way. Upsets me when l hear of people giving up when really they need all the help out there to make life more comfortable for them.

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