Hi, I want to start a petition regarding the way RA suffers are treated by the DWP and their cohorts (Atos Healthcare and anyone else who thinks were just a bunch of lazy people.
I want everyone to sing it because its going to affect us all sooner or later no one will escape.
Any thoughts, any help

Dylan

Hi Dylan

I think it's a great idea; it's awful having to fight for DLA and worrying about whether they'll take it away, even though you know you're entitled. I must admit that, like Chockers, I do feel they're watching me all the time. Luckily I'm not likely to be doing anything I shouldn't be, because I can't, but it's still not nice. I can't advise you though, but I wonder if contacting NRAS might be an idea?

Anthea

Hi Dylan, i am in the process of filling/renewing my DLA.
I have been on high care rate since my diagnosis, and although i consider myself to be lucky, i am at this moment having a really crap time with flare up and cataract , and i will throw in my "sparkle has gone" am lacking in confidence/ low self-esteem, but i can imagine like other genuine people with genuine illnesses i try hide it.
Am with you on this.


Jenny
xxxx

hi, i am with you 100%. i had a dreadful time claim anything. as one department said yes, another no.
i have just returned to work after a year off thanks to this ra. i was told i could claim for permitted work
as i only do 12 hours a week,, but must still attended pathway to work meetings. why i'm not looking for a job
if i don't i may lose my benefit what benefit i'm still waiting answers. the system is too confussing and someone is
looking at the forms who does not understand ra at all and the effoects it has on us. and i think it's all
targets. the main thing is NO ONE LISTENS TO US.
rant over lynne

Hi Dylan,

I would also like to support the petition like others I've had a very difficult time with the DWP, and mentioned this in the ESA.

Love,

Barbara
XXXXXX

Hear hear Tabbycat.

I have mild arteritis but no way can i do the job I use to do and unfortunately the jobs they (jobcentre plux) seem to think I should be doing is something lower rather than aspire higher. There is a disabiled job centre section called remploy and all the disabled jobs seems to be manual work....... Which isnt suitable for us and I think they are really focusing on those with learning disabilites. JobCentre wants to push you on to anything so they can bring the numbers down. There isnt the support for us and we cant be lumped in with the healthy or disabled but need our own category.

If i was to go to atos I would not be given any benefit. However I am in a position where I would not be able to work so what do I have to live on air? I find the whole jobcentre thing stressful as I find it difficult to deal with having this illness without talking to someone who doesnt understand. If they want us to work there should be proper support and decent retraining. Honestly you dont have to be a brain surgeon to work this out. Its all down to costs and resources not our position. I wonder what happens to the other countries like scandanavia or france for that matter - perhaps we could investigate what they do. Does NRAS have any european connections.

I think it should got on the doctors /consultant statement of our condition and a statement from ourselves. If they want to lift us out of poverty then they should do it properly instead of brushing us off benefits. The problem with the illness being fluctuating should be taking into account to cover us from improvement in condition clause or perhaps improvement in condition for us could be to be in remission over a length of time like 18 months.

I think time and care should be taken to put this petition together to ensure we put our point accross succently and effectively and I do agree that perhaps to get in touch with other charities and forums to get support.

Summary

DWP/JobCentre should
reinstate the category for polyartheritic inflammatory conditions.
GP/Consultants observations of our conditions should carry weight
Consideration of Our ability to do what our "trade" was, be it plumber, administrator
Better support should be given to us from all agencies from NHS to manage or day to day stuff, counselling for dealing with this disease, to encourage us to get back into life by providing retraining and whatever support we need. Dont forget it has been agencies like NICE that refuses drugs to let people have a better quality of life never mind work.

OtherSupport
Look at other countries for examples of how they deal with uncurable conditions similar to ours
Find out whats been done on our behalf so far
Rally support from otjher charities
Perhaps speak to NRAS for guidence on this?

re DWP not being experts to assess whether we are entitled to DLA:

recently I reapplied for DLA and dutifully completed the questionnaire, and sent it off with extracts of my diary to explain how this RA thing gets us some days and not (or not so much!!) on others.
WEEKS went past and then I received a phone call; apparently I had claimed to" need help in/out of bed 7 times every night of the week" !!! (I hadn't cos I don't!!!)

Of course I told her this, and then came off the phone wondering exactly what I HAD said! After checking, I rang the woman back; she wasn't at her desk but I chatted to her colleague:

Me: so do you have to read all these applications through?
her: yes, and mighty boring they are too
Me: but who actually makes the decisions then, are you and your colleagues qualified doctors, nurses or what?
Her: no way we just get paid to make decisions and we do it on a sort of guesswork basis!

at that point "my" lady came back and she then insisted I had said the 7times 7days thing.

Me: No, I didn't, I have my copy in front of me,
Her: well anyway, I have already half-read your application and have made a "DECISION"
Me: How can you if you'd only read half the thing?
Her: EXPERIENCE, my dear, just experience!
Me; But you aren't even a doctor or a qualified nurse, so how can you , without experience of the illness, and without qualifications , make these life changing decisions?
Her: they are hardly life changing, my dear!

with that attitude, what hope is there?????

Take it to appeal Lylie. I know it's hassle but the chances are that you will get it and it will have to be backdated to the date you applied!

Couldn't agree more. These people are b**** morons

That`s a good suggestion from Doreen, Lylie - though why you should have been treated like this is simply disgraceful.

Kathleen x