Petition to Reduce PIP stress for Rheumatoid Arthriti... - NRAS

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Petition to Reduce PIP stress for Rheumatoid Arthritis sufferers

MissMinto profile image

I’m not sure if it’s ok to post petitions so I apologise in advance if it’s not, but I do think it’s a good cause.

The petition is calling for people with Rheumatoid Arthritis to be treated equally to people who have a terminal illness when applying for PIP in order to relieve the stress of the application process and repeated reviews.

More details here:

you.38degrees.org.uk/petiti...

50 Replies

Hmm, (no offence meant MissM 😊) but RA affects everyone so differently that you can’t treat it like a terminal illness. It does need assessment. I do agree PIP needs changing but not like this. I’m surprised so many have signed it.

I'm sorry but totally oppose the idea of RA being put into the same category as a terminal illness. This is a really bad idea. RA is not terminal and to link it one anyone diagnosed with terminal cancer is offensive. What about those with Parkinsons Disease or MS for example ??

Absolutely….RA is a nasty incurable disease….but we have so many drugs available now….suggesting more people with RA should be granted PIP is not the answer,,,,,we need moore access to rheumatologists & better management of our disease….….not resort to Benefits……

My thoughts exactly and with some on here with relatives with Cancer I just got upset over the idea.

RA is a chronic debilitating disease with fatigue and some side effects which can be terminal such as heart failure, obesity (through inability to exercise not calorific intake) and the need to take strong pain killers to allow even the restricted movement we experience so it would be right that once assessed we dont have to keep being reassessed as a lot of us will never go into remission.

But an awful lot do go into remission.

Again not true, and I've had RA for many years. Of course it's chronic that just means lasts a long time as acute means sudden. So I had an acute kidney injury which is now a chronic disease and I've have RA related blood clots (PE's ) in my lungs (2014) they are treatable and really not a huge issue. Once years ago it may have been fatal but treatments have moved on. I take AZA and Etanercept and live a normal life. I have kidney failure but thats another story, even so I could not qualify for PIP as I can and do walk over the required distance. So do I lie and say I'm disabled ? no I don't, because I'm not. RA is a blip not and an inconvenience at times but it is life shortening in the same way as Cancer No , nor is it the same as MS. Cystic Fibrosis, Parkinsons, and all the other life impacting or limiting diseases and conditions people experience and for which there are not always very good medications yet. Think about the fact that if you were to isolate out RA patients as they might get a flare because they've cleaned the whole house (which is the example used) then what rules would have to apply to all the other groups thus its self defeating. Madness!

I think the whole Benefit system needs a good shake up…..there should be a proper clinical assessment system that is revisited….nkot just carried on after people’s treatment means they don’t qualify.There were times I’m sure when I was first diagnosed I would’ve qualified for the Benefit that was in place before PIP…..but thankfully the drugs I was prescribed worked their magic and now although I am very elderly I thankfully don’t need to claim a Benefit…..But if I did …..all I would be entitled to is Attendance Allowance ……which is incredibly difficult to obtain….. where as if that Benefit was more easily accessible ….an awful lot of old people would not have to go into NHS care homes thus costing the Tax payer much more than the AA Benefit would cost.

Hopefully as the country’s finances are now being seriously addressed…Benefits will be more sensibly controlled.

I agree there has to be a shake up and tbh the cheats forced to pay back or face prison. It has to be reviewed and based on need of course. That need may vary and over the years the advice to claim as though as the worst day has made it harder to get benefit as it drives the system into more and more difficulty. It is self defeating. AA is a benefit that needs to be made simpler and I think should not be needed for the amount that have to claim it if the state retirement pension was based on the real cost of living. I dread to think how much I paid in over the years to get back a fraction. I'm lucky I also have a private pension and still pay b----y tax.

You have probably read in the papers recently that the Gov aren’t going to stick rigidly to the triple lock rules for the annual State Retirement Pension increase …I think that is very harsh for the 70+ generation….especially widows who probably don’t have a private pension to top up.I know they can get a Supplementary top up…but most don’t apply for it.

Reportedly we do have the lowest State retirement pension in Europe but then people in other European countries on a par with our economy ..pay a higher contribution through their working life so of course they’re going to get more out of it at the end!

Yes exactly so. xx

No that is not the case these days…..although a lot of people take a while to find the right drug regime…most of us do find a treatment that allows us to lead a good life…..not needing Benefits.

Great miss minto And hopefully it helps all to reduce the stress and suicides etc from this nasty system thats not fit for purpose and hope all the grief and stress and lies and inaccuracies stop . There is a few pettitions on the go for all illnesses with long term and unlikely to change to stop all the unnecessary repeat assessments and appeals all the time for those claimants. And it is just a bit of the rules reapeat assessments only and terminal illness with 6 monthes are fast tracked etc and that bit is only and will only be for terminal illness im sure and special rules are for terminal illness only .actually with the dirty tricks of dwp over 100 terminally ill claimants die a month still fighting for their benefit terrible .signed 👍

Vonnie10 profile image
Vonnie10 in reply to Ajay575

Well said

I certainly agree the system is set for failure and very stressful. I do feel the process doesn’t really reflect how this disease works or take the doctors reports at face value . Who in their right mind would want to take the medications we do . We have had to apply for funding if on Biologics/ Jaks proof enough I feel .

Some people with RA don’t have many symptoms and some even manage to run marathons (no chance for me though). So I’m sorry I cannot agree with the proposal to compare RA with a terminal illness. However I do appreciate that many sufferers have a stressful time and the assessors are often very unsympathetic; better training is what they need.

Yes I can't run a marathon but my life is normal so much is just rubbish and assumptions. This has made me cross and I feel dreadful that anyone on here who may have a relative with a terminal diagnosis is being compared with someone with RA. Its incurable but treatable. Utterly awful.

Unfortunately for some even with treatment it does in no way allow for a normal life of any kind, otherwise i would be out walking the south downs or going on holidays where i could walk without pain for longer than five minutes. We may not have a terminal disease for which i am thankful but the result is a permanantly restricted life, which if assessed once should not need repeating.

No that is not true, remission is achievable and the aim of the RA team. It's sad some don't achieve that but they won't die of it. Yes they will die with it but not of it. This petition is offensive and contains some dreadful assumptions which are factually inaccurate. Finally look at it another way how would you feel if your relative had a terminal disease and less than six months to live but because of the additional pressure in prioritising conditions which are not fatal, your relative could not get the help they needed so desperately before they died. Its shortsighted and immature to not see a bigger picture. The system is not perfect but it exists and is not free its paid for by taxation and if all our taxes doubled to pay for those who might actually not need it we would all suffer. Of course it's not perfect and faults do need to be rectified but a saying one illness group is under more stress than another isn't an answer or even a good idea. Do you then rate people with one leg as less in need than a double amputee or if they smoked do you refuse benefit as its self induced ?

no that is wrong- rheumatologists try to manage disease for everyone but it doesnt always work for some and many cannot get so called remission and they end up riddled with osteroarthritis as well and fybro because of pain.

Then that is not making it about RA but OA and Fibro. which is not covered by this petition. And that is my point you can't make it about a named condition and as I said remission is achievable. Or does it mean that if someone has RA then they get priority just because they say they have it ? as some with RA are sero negative so will they get left out as technically the diagnosis may be subjective not actually proven. It really is not that simple and you're only looking at this from a narrow viewpoint. It simply can't be looked at from an individual condition with a priority just for a single condition. As I said I have RA and can't ramble as I used too, but thats due to CKD not RA and I do exercise regularly. I worked in the Benefits system and its not perfect but its very complex and I am certain that it has faults but this petition, is simply put stupid, badly worded and really well; daft!! It's trivialising life limiting diseases and making people with RA look like self indulgent, self seeking selfish people at the expense of people who are dying. It's not about walking the downs but making life easier for people who are dying.

But it about walking wish I could just get to a bus stop!!!!

Hi eastboornelady . If your from Eastbourne I live near you in Bexhill . It’s nice down here isn’t it? I struggle with my joints and have to push myself to walk my two poodles 🐩 🐩

It is nice- I worked in bexhill for a while and enjoyed looking at all the smaller shops there rather than the Eastbourne large stores.

Vonnie10 profile image
Vonnie10 in reply to medway-lady

Lady I get a vibe from you I’ve seen you commented on this a few times in the past. You hate the thought of anyone getting benefit when there not doing great ..you’ve just said should I lie... assuming people lie just to get it.. why would you say that...they want to start chasing all the rich tax dodgers seems to me you hate anyone getting any benefits . And think people with ra are all cheating the system . You dive all over it when a post is put up about ra and benefits just because your ok does not mean everyone else is..

medway-lady profile image
medway-lady in reply to Vonnie10

What utter tosh if you've read my posts then you'd see I have never, ever questioned anybodies right to access the benefits system. I spent years advising people how to get benefits and actually believe that the system does need looking at or did you miss that ? I find your tone offensive and I have simply pointed out that if remission is the aim then because I'm in remission that I would have to lie to get PIP or even harder now AA. And I have kidney failure too as well as Brochectasis but my life is good. I worked with RA and have never said that anyone has lied to get benefit that is a gross misinterpretation of my post.

Vonnie10 profile image
Vonnie10 in reply to medway-lady

What ever I've noticed past comments from you over the years about the poor disabled People Your words.... It's trivialising life limiting diseases and making people with RA look like self indulgent, self seeking selfish people at the expense of people who are dying. It's not about walking...

Thankgod you don't work there anymore...

You assume because your OK everyone else is.. I'm not really bothered you find me offences I could say the same about what you post about benefits.from what I've seen over the year when benefits are posted you jump all over it..in a negative way.

medway-lady profile image
medway-lady in reply to Vonnie10

That is so not true and you've completely misquoted and misrepresented what I've actually said. Taken out of context to suit whatever you want to make it appear. Very silly and I repeat to make myself clear it is trivialising a terminal condition to suggest that RA is the same and should therefore be treated the same. Because it is not the same and to suggest it is does make anyone with RA appear to be self-seeking at the expense of the terminally ill. If that offends you then so be it but you cannot justify my remarks as you do not know to whom I've spoken it is a completely erroneous supposition. If you want to go back over my postings then please do as you will not find negative advice or any suggestions that anyone has made any application that is false. I'm sorry to read that someone you knew has died linked to the DWP however not believing someone is not the question here on this post its about comparing a single disease with a terminal diagnosis.

Vonnie10 profile image
Vonnie10 in reply to medway-lady

Typicall try and bend it too suit you... dwp for you.. didn't make it out to.suit myself.... its not just this post I've read it from.. its other post .. if you read my comment..why would I pipe up for no reason its not my nature.. I worked untill retirement lucky enough to do so with ra .. some cannot..im. readng you.. you dive all over post about benefits im not the only one too notice it.. I've seen it a good few times not everyone is as fortunate as you and others ...some may be in a bad horrible way .and may never get it sorted and controlled.. it causes all sort I get that vibe from you on here and preciously post you' made comments on here before your words should I lie🤔 I've seen it .. why would you say should I lie. three times I've seen in on different post.. probably missed some.as well🤔..its rude unbelievable .. and just leave it now ..move on.🤭 people.on here are genuine.🤬

medway-lady profile image
medway-lady in reply to Vonnie10

I'm beginning to wonder what your actually talking about as I can't follow you now. And no I will not leave you to make such accusations which are unfounded and untrue and when did I say you lied. In 94 replies I've not once called anyone a liar or a fraudster or indeed anything else. As for others who ??? and the correct thing to do is refer to admin. Really do leave me alone as this is tiresome and futile. ? As for a vibe well thats a bit odd and fortunate well really a kidney transplant on the horizon isn't actually fun but then again your clearly taking some sort of personal angst out on me and no amount of trying to say your mistaken is being read as what it said. So I'm sad for you and ask you to stop reread the OP post and the referred to petition and all the replies again. Stop attacking me personally when in 94 replies only a handful have been about PIP and I've always said I can't advise as no longer insured. That is my final word so do contact admin as they can confirm that I have never called anyone a liar or fraudster. Or indeed anything else. Utterly ridiculous statement.

Just as an aside how is this response from me 3 months ago in any way any of the things you accuse me of. "Write down what you say and don't be rushed the person questioning will be either punching in or writing down your response so if you're unsure ask them to repeat the question. Don't waffle or repeat things not relevant to the question being asked either. I'd reread an application form to jog the brain cells and don't say" oh you know" and good luck. Notes whatever the outcome do help."All my responses are of the same ilk. !! They are objective and compassionate not calling anyone anything.

Vonnie10 profile image
Vonnie10 in reply to medway-lady

Didn't say your a liar midway you said before and today should I lie about walking referring to benefits cheating and you've said it before that's how it comes across .just leave it now its a attack on dwp who are horrid sorry but they are... instead of the elite rich who get away with murders.

KittyJ profile image
KittyJ in reply to Vonnie10

Vonnie if you’re going to accuse someone of saying something then you should put links to prove that this was said, and where others have said the same. I’ve always found M-L to be very polite, knowledgeable and helpful in her replies, I don’t recognise this person you are saying she is. I looked back at her replies and can’t see the things you are accusing her of either. Please put some links up because it looks like you’re attacking her with no clarity as to why.

Vonnie10 profile image
Vonnie10 in reply to KittyJ

I cant put links up its been over the years ..I've seen them comments.. im not saying she is horrible in anyway but when you see things wrote here when benefits are been discussed she did say today and in the past on comments she said should I lie and say i can't walk. This comment does not come across well on this forum people are genuinely struggling and looking for help...... and when people are struggling dwp can be horrid...i admit some people do cheat the system them who have never done a days work and don't want to work.and scam it. . And want it all free...but not on here...tax dodger get away with more .

in reply to Lolabridge

The assessors lied about my telephone consultation and said I was 'laughing and joking' with the assessor. This was a complete fabrication and when I challenged it and asked them to send me the call recording they refused and granted my appeal!

Lolabridge profile image
Lolabridge in reply to

Yes I’ve heard some awful stories about the assessment process and the assessors themselves. I agree it’s very poor. I hope it will improve.

But to compare RA with terminal illness would be wrong in my opinion.

Vonnie10 profile image
Vonnie10 in reply to Lolabridge

Yes my cousin young husband hung himself due to dwp. Nit believing he was sick..

Lolabridge profile image
Lolabridge in reply to Vonnie10

That is so very sad and I’m sorry for your loss.

Vonnie10 profile image
Vonnie10 in reply to Lolabridge

Thanks it was a while ago 5 years but my poor cousin is not the same after it . Destroyed her.life massive let down from. dwp .

So sorry but really cannot agree with this petition and feel strongly enough to post. RA is not a terminal illness and should not be treated as such. In fact, it may do more harm than good, in that the point is that RA is a lifelong illness and sufferers with moderate to severe RA who do not respond well to medication will need support and easy access to PIP on an ongoing basis, this just muddies the waters. And many people do respond to meds and live relatively normal lives. I would instead support a petition that makes it easier to claim for RA over long periods and shows greater understanding of how RA as an illness can wax and wane. But it is not a terminal illness - think of the impact on mortgage applications and insurances etc. If it was ever considered as one.

Recorder500L profile image
Recorder500L in reply to cafbat

Interesting re RA and mortgages and insurances. Going back 28 years ago when hubby and I applied for a very small mortgage wishing to move house. We are both the same age, born in the same month and year. The mortgage company increased my age by 5 years as I had RA which I had to declare on the mortgage medical form.

By terming RA terminal it could make it very difficult to get a mortgage or insurance.

Signed

Well done.I've forwarded to dozens

Personally, I think the assessment system needs changing , not the classifications .

Hi, I was turned down for PIP and whilst disappointed, the extra money would have come in useful being unemployed now, do I want to be classed as disabled?

No I definitely don't agree that it should be treated the same as a terminal illness. There are many other conditions which are also often sevete

Morning. I have had horrors with the DWP; especially the first 4 years of my illness. I think the stress should be on the Medical knowledge and expertise of our Consultants & Advanced Practitioner Nurses overriding any ‘health professional’ with 7.5 days training. Also support is needed for those people navigating a complex benefit system when they are housebound & have no help or support network (My onset coincided with massive cuts to support agencies etc. And no-one would do a home visit).

Everyone is different. I couldn’t move for 2 years, then began to move slowly for 2 years, before anything became ‘manageable’; ie. I could move without screaming. I have had to medically retire and am on top meds. I have a severely restricted life.

Other people though do not have severe and rapid onset (everywhere). Some people are fortunate in that they have very occasional flares and go into remission for the most part.

It is a very complex disease. More knowledge of its reality needs to be known by GPs, ‘Health Professionals’ and others. I think classing it as a ‘terminal illness’ will be triggering for a lot of people and gives an untrue picture of things. It also gives ammunition to dissenters.

To be entitled to PIP under special rules for terminal illness, you have to have a life expectancy of 6 months so I'm not sure this petition is going to have much success to be honest. PIP can be an ongoing award if the severity of the illness warrants it with a light touch review every 10 years so repeated reviews and stress are alleviated in severe cases. PIP is awarded not for the illness but how that illness affects someone.

I think PIP needs a third category for long term illnesses with fluctuating symptoms for RA, MS and other conditions. Major flaw in it's design!

I can understand people being driven to create this petition from sheer frustration - problem lies with DWP. Best wishes x

I couldn’t agree more! 💐

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