Cost of Ra: Hello all. It has been a little while since... - NRAS

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Cost of Ra

Slife profile image
15 Replies

Hello all. It has been a little while since I posted. I have been keeping up with all the posts though. This condition has now cost me my relationship with my partner

I have had to move out this week and try to start again. I was never really forgiven for being less than marvellous due to flaring while getting the meds right. I also had a period of back to back chest infections and UTIs followed by a leg ulcer

I tried sooo hard to act 'normally'. This turned out to be a pretty useless up hill climb.

RA has cost my job, relationship and energy in 2 years

I have now got a lovely part time job which is unlikely to pay the bills and managed to score 0 on PIP assessment!

Onward and upward...

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Slife profile image
Slife
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15 Replies
keeta profile image
keeta

Bless you .i am so sorry .

Be strong .every cloud has a silver lining .xx

Nettac profile image
Nettac

Oh no! Sorry to hear that!

Do you have the energy to fight the Pip decision? You will probably be entitled to housing benefit if you're on a low income. that might at least help.

Look after yourself.

Libluce8 profile image
Libluce8

My husband, who’s had RA for 7 years, also lost his job not so much because of RA but because of the side effects of methotrexate which leaves him a mess, far worse than the RA...he also scored 0 on his PIP assessment...because he answered the door and took his driving licence out of his wallet (which he doesn’t have he has a zip purse because he can’t get cards out of his wallet). Policy changes mean that PIP is harder to get, but appeal it...you have RA and it does affect your quality of life!

I wish you well, someone will come along that sees you for you and if they love you will stick with you despite the RA and whatever life may throw at you...think positive x

sylvi profile image
sylvi

Oh my darling i am so sorry you have lost your partner,they clearly not the right person for you or they wouldn't have given up on you so quickly. It just means there is someone better for you darling. Re; pip appeal. Hugs from me.xxx

ruth_p profile image
ruth_p

Really sorry to hear how much it has cost you. I agree with Sylvi, he is not worthy of your love and there will be someone out there for you who will love you regardless of your condition. Appeal your pip assessment.

summer32 profile image
summer32

It has cost me a few jobs I had to leave due to health currently signed off with major flare, that contract is due to finish March 24 date In place before the flare, steroids make me very bad tempered as does the pain

moallen profile image
moallen

Just think Karma - what comes around goes around.

popsmith1874 profile image
popsmith1874

Hi Slife very sorry you lost your job and partner due to this damn disease but he wasn't the one for you if he couldn't take the good with the bad times, I would definitely appeal your pip decision as your entitled to it so hang in there as every club has a silver lining as they say xxx

stbernhard profile image
stbernhard

Hello Slife, your story sounds awful and I really feel for you. Life can be such a bitch at times. Please appeal the PIP. I just hope you find a way to improve your days. We're always here to listen. Bless.

Patsy-57 profile image
Patsy-57

Hi Slife,

RA is a a horrible disease. Main problem is it is invisible. We put a smile on our faces and try to get on with our lives. Only people who have this disease know it's true impact. Be strong and you have the support of all the people here when you need it.

Patsy 57

Hi Slife, Don't suppose I need tell you this now,since all the posts before me have said the same . PIP,I've never claimed so I know nothing about that.

BUT,relationship is another thing. My hubby is 76yrs old,and as fit as a 21yr old,me on the other hand,have lots of health issues,including RA,Emphysema,chronic Stomach pain, etc etc,he has not had a holiday in 15yrs due to me,hewill help me in anything I need help with. Now that's a relationship,as if it was the other way round,I would do the same.

Believe me you've lost nothing,so please don't think you lost your relationship because you have RA,you never had one in the first place.

You are much more worthy of someone who loves you,no matter what happens with your health. You take care,and look after you.

Sorry for the rant but,people who leave people when there at there lowest really makes me sick.

Nuttyshirlz profile image
Nuttyshirlz

Hi Hun

Your story sounds so like mine.

I also lost job and fella.I also tried to not let ppl see how it affect me.Im still out of work and on my own.only ppl I have contact with are online.

So your not alone x

nymima01 profile image
nymima01

I am assuming PIP is in the UK - similar to US disability payments?

If you disagree with the decision that’s been made about your PIP claim, you can challenge it. You should challenge it within 1 month of the decision with a PIP Mandatory Request for Reconsideration.

If the time limit hasn’t expired make an appointment with Citizens advice as they will help you with the paperwork.

If the time limit has expired ask the CAB to help you with a new application. Please don't give up! Wishing you well for the future.

Interesting facts:-

Express Online By ZOIE O'BRIEN

Is THIS why you lost PIP? Disability activists claim DWP assessments IGNORE mobility rule

PUBLISHED: 05:01, Sun, Feb 26, 2017 | UPDATED: 10:16, Sun, Feb 26, 2017

These tests, designed by the Department for Work and Pensions (DWP) - and carried out by private firms -

Assessors for French data firm ATOS, and British business Capita must establish whether the claimant can walk 20m unaided, among other daily tasks, according to DWP rules.

But, experts told Express.co.uk they believe assessors are watching disabled people from the window of assessment centres and cynically ticking off the mobility criteria - without the person even knowing, or having the chance to be questioned on it.

If such practice is being carried out the assessors are failing to provide the Department of Work and Pensions (DWP) with the right information to assess a claim.

However, both have argued they are carrying out tests and following rules SET by the DWP.

Under the “reliability criteria” assessors MUST establish whether or not the 20m can be undertaken EVERY DAY and under varying conditions.

Instead, at assessment centres “informal observations” are being carried out which campaigners say cannot possibly meet what is set out in legislation.

Vital information which is often unknown - is the claimant must be asked if they can ALWAYS walk the distance required.

If they cannot walk it in all conditions, meeting all the criteria – it must be considered they can NEVER compete the task.

Renowned disability campaigner Baroness Thomas of Winchester faced her own battle with the Department for Work and Pensions (DWP) and won.

Fighting for the rights of disabled people the peer in the House of Lords said the four vital “reliability criteria” she had inserted, along with Lib Dem MP Steve Webb, are being IGNORED at assessment centres run by Atos and Capita.

“What I got inserted into the legislation was that the four reliability criteria had to be more than just guidance,” said Baroness Thomas.

“The four are, in the case of the Moving Around distance, that the claimant had to be able to walk the distance, even 20 metres, ‘safely, to an acceptable standard, repeatedly and in a reasonable time period’”.

“The Government made those criteria mandatory.”

However, the DWP claims their tests carried out by contractors ask certain questions which CAN establish someone's abilities every other day.

A spokeswoman said they do not look at a "snapshot" of someone's life - despite some assessments lasting FORTY MINUTES.

In comparison, social care assessments which establish needs of the elderly and disbaled, by local councils' social services department, can take DAYS.

Baroness Thomas said: “The Government have said that if a person can walk that distance on some days but not other days, then they must be deemed not to be able to do the distance according to the criteria.”

In a PIP assessment a person is only required to be able to walk 20 metres unaided, just two bus lengths.

This was originally set at 50 but changed suddenly in what was considered to be a senseless money-saving tactic.

Baroness Thomas said: “This was obviously going to save the DWP a lot of money and mean that a lot of higher rate DLA claimants would lose the higher rate PIP and thus not be eligible for the Motability car.”

When the Government published the PIP regulations, they suddenly changed the original 50 metre guideline.

Baroness Thomas said: “My point is that the walking evaluation must be an outside test, and must take account of weather conditions, state of the pavement, crowds, dropped kerbs, even if we’re only talking about walking 20 metres.”

Firms like Atos and Capita have banked more than £500m in taxpayer cash through the DWP contracts.

But since taking the DWP contract for PIP assessment in 2013 elderly, infirm and disabled people have been forced into “unfair” re-assessments which leave them anxious and sometimes penniless, campaigners say.

Wheelchair using UKIP councillor and disability spokeswoman Star Anderton, 45, was also forced to go back for assessment.

She claims it is a common that, people are considered completely able to meet the criteria, if they can walk the required distance just ONCE.

She said: “So many people say that’s what happens. They go for assessment and it is basically assumed if they can do that distance once, they can do it all the time.

That’s the opposite of the Government guidance “They might be able to do it every now and again.”

Ms Anderson who campaigns on behalf of other disabled people said the reliability criterion is mentioned in forms by Atos and Capita.

“The reliability criteria was quickly inserted after the boundary changes from 50m to 20m,” she said.

Even though it’s in all your forms - they don’t take any notice at the assessment centre. “ The criteria isn’t being adhered to. “It is as if all they want is to put everybody on standard rate and try and get the figures down.”

Atos has repeatedly denied such claims but campaigners have accused them of rewarding staff who bring down the number of claimants on the DWP.

The company told Express.co.uk they carry out testing as advised by the DWP and do not deviate from the set test - which they carry out and pass back to the DWP for a decision, Capita mirrored this statement.

But people who had been for DWP assessment with Atos and Capita said they were not asked whether they could walk the required distance “safely, to an acceptable standard, repeatedly and in a reasonable time period”.

In fact, when their assessment information was returned from the DWP it said they were “informally observed”.

Despicable Behaviour of The Assessors!

NEWS

12/04/2016 10:15 BST

Channel 4's Dispatches Shows PIP Assessor Mocking Disabled People As 'Fat'

Dispatches sent Noel Finn, a psychiatric nurse, undercover as a trainee disability assessor at Captia, to see how the PIP assessments are conducted.

He took Capita’s 20 day training programme and was told that one of his priorities was to get through his assessments quickly or the company would lose money.

Finn spoke to Alan, a Capita trainer:

Alan: The money? It was ridiculous. I was getting around 20 grand a month, most months.

They’d pay around £80 an assessment for the first 8 assessments, then they paid £160 an assessment for 8-14, then they paid £300 per assessment for 14-21.

Noel: So I imagine they’re all banging them out very quickly then?

Alan: Oh yeah, we was flying through them, because of that money. That’s 20 grand a month.

Capita’s Chief Medical Officer also told Finn: “The issue we have is the amount, so we obviously need to get you to be doing as many assessments in a day as you can possibly manage, and we need the quality to be maintained as well. If we don’t do the correct number of assessments we will get penalised by DWP financially."

gilhoolj profile image
gilhoolj

So sorry to hear. I have a wonderful husband (45 yrs) who without I would be in personal care home. My friends & family have helped as well. I tried to act normal when the pain started but when you are in that much pain it's really hard. I cried when i realized this was my new life, but then just figured I do what I can, when I can. If people don't like it that's their problem. I read a lot and watch comedies on TV.Laugh as much as possible, It helps. I will pray for you& send good thoughts. Also eat as healthy as possible. I hope this makes you feel a little better. Even a little. You sound like a very strong person so hang in there.

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