Would we not be able to somehow make ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Would we not be able to somehow make our group known to the dwp, the government and others etc

Cotswolds25121 profile image
48 Replies

Why are we all talking amongst ourselves, listening to one another and supporting each other and not making the above aware of how we are feeling and suffering! Tell me if I’m wrong but surely we must be able to all pull together and take it a step further so that we aren’t all just talking about this but to actually try and change things??? It seems to me that there are so many of us having to apply for pip and other benefits to just get by in life that we need to not just sit back and be grateful for what we are ‘awarded’ and have to fight for it and be told over and over that ‘you are a ‘liar’ in pip applications and then have to appeal. How many more years does this go on for! There are so many people that are living a half life. Please reply to this post if you feel like me.

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Cotswolds25121
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48 Replies
AllthatGlitters profile image
AllthatGlitters

Hello yes I totally agree with you. There needs to be an easier process and a quicker turnaround for decisions on the award (or not 🥲) x

Cotswolds25121 profile image
Cotswolds25121 in reply to AllthatGlitters

Thank you 👍🤗xxx

disabilityrightsuk.org/news...

Chronic Illness Inclusion Project is doing just that.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

there are a number of groups like disabilityrightsuk that we try and amplify, take part in, or campaign with to further certain aims which we are too small as a charity to tackle on our own.

Particularly in this case where there are a number of conditions that face the same battle. changeable conditions as well as those that are invisible face particular challenges. The challenge with the benefits processes is just one challenge that people with fibro face.

Queenielot profile image
Queenielot

Hi I agree also has yes we all let of steam here should be doing it to them instead

Carlt profile image
Carlt

I'm not sure who "them" are.

The benefits agencies follow protocol and procedures set down by government.

As a democratic nation we get the government we deserve.

thespianglobe profile image
thespianglobe

I am with you on this but personally it would be a help and be a start if my family understood why I am so often fed up. I also have quite severe problems with my vision which are non-fibro related and if anyone else peers at me and say that I look OK I will scream.

Tjmill profile image
Tjmill in reply to thespianglobe

I hear you with the family not understanding

brightnbreezy profile image
brightnbreezy in reply to thespianglobe

So sorry to read of your frustration - it must seem endlessly hopeless. Hugs to you.

pickledtink profile image
pickledtink

Do you have a link to that? Was it in main media or on twitter or other social media?

Lucyloo67 profile image
Lucyloo67

I agree, I also have other health conditions and it’s difficult even getting help from doctors, I hate having to jump through hoops to prove that I actually these health conditions. They even question doctors on some occasions, which I think is appalling. I try to follow and sign petitions or anything that I think would help., written to MP’s etc.

Lucozade profile image
Lucozade

I extremely doubt The DWP would interact with anyone on a public forum. Each individual case is set out on your pip forms when you apply. I have never heard of the DWP calling anyone a liar. If you consider being turned down for pip being called a liar then I think it’s a case of not qualifying, if You think you still qualify then you can appeal. The whole process and final outcome is there to support those that need PIP and weed out those that are liars and unfortunately there are those that do lie, that doesn’t mean you are being called a liar, it means you haven’t met the criteria set out. I currently know someone who has just been turned down a fourth time but they certainly aren’t feeling they are being called a liar because they have medical reports to back up their illness.

Farmerboy profile image
Farmerboy in reply to Lucozade

Thank you for your reply, comments. There is so much opinion and advice stating people could get this amount of£££s for this or that illness. The thing is people read this and have a go then moan, appeal ect still no award. PIP as we all know who have been awarded is about how you, me and other claimants manage and our abilities or inabilities to cope with the PIP descriptors . There are no official illnesses, diagnosis or disability criteria that can automatically get an award granted. Unless you are terminally ill with less than a year to live confirmed by medical evidence.

mattjoachim profile image
mattjoachim in reply to Lucozade

The Gov. held an enquiry in 2017into how health assessments are carried out for PIP and ESA . My case was submitted and published at the time. The DWP were made aware by Maximus that my assessment was flawed and had omissions and errors inn many areas and that I received an apology and consolatory payment from their manager. Yet i still had to go to Tribunal to get my ESA reinstated. So a health assessment that is carried out and has omissions, errors and lacks details in many areas [[Maximus own words used in letter that they wrote to me and sent copy to DWP{ was sufficient for DWP so they could deny benefit.

Cotswolds25121 profile image
Cotswolds25121 in reply to Lucozade

I have read people’s posts on here before where they say they have definitely been accused of lying in their report

Lucozade profile image
Lucozade in reply to Cotswolds25121

What the DWP have used the words “You are a liar”? I find it pretty hard to believe that. A failed application for pip is not the DWP calling the applicant a liar. It’s just them trying to ascertain if they qualify. I would urge anyone who genuinely believes they deserve pip to support themselves because of their disabilities to re-apply or appeal.

Cotswolds25121 profile image
Cotswolds25121 in reply to Lucozade

From my experience when they have received a copy back of the report it comes across as insinuating that they are lying and they twist the claimants words. I am not being antagonist, I am expressing my own views

Lucozade profile image
Lucozade in reply to Cotswolds25121

I quite agree with you it can seem insinuating or alluding that a person is, but that’s only because they’ve gone against the persons application, with a good reason or by a mistake, remember sometimes it’s just a persons reading the form’s opinion, it’s not always the correct one. my advice to anyone going through that kind of experience is contact citizens advice and fight4justice if they are getting nowhere.

Trappedmoth profile image
Trappedmoth in reply to Lucozade

I was turned down the first time I applied for a PIP, but was successful the second time. It is so common to be accepted on the 2nd application that it can't be a coincidence. It's a policy meant to keep down the amount of money they pay out.

Lucozade profile image
Lucozade in reply to Trappedmoth

I wouldn’t say coincidence even. Are you saying it should be paid out first time every time? The country would be bankrupt if that was the case. I’d say maybe You worded it different on the second application, had more evidence of illness , simply a number of factors but at least You got it in the end, so the system has not failed you. Genuine cases always get PIP in the end, whether it by repeated applications or appeals. If the evidence is there of a disability then that person will quite rightly get awarded PIP. In a previous post a friend of mine is about to embark on a 5th application, yes she’s disappointed but fully understands that the process can be a long drawn out affair.

in reply to Lucozade

You seem to be living in cloud cuckoo land. DWP awarded me 0 points. 2.5 years later at Tribunal I got Enhanced Both. This was a review. Several hundred pages of medical evidence to go on. Wake up!!

Lucozade profile image
Lucozade in reply to

Not at all, I’m no where near cloud cuckoo, maybe You slipped through the system, maybe the assessment or form wasn’t dealt with correctly. It happens, you got it in the end though didn’t you. Off course on the other hand they could just pay out straight away, everyone, wonder how long this country’s bank balance would last with that scenario.

Midori profile image
Midori in reply to Lucozade

Personally, I wouldn't like to think they has access to this Forum; they alrwasy find ways to deny us, and I wouldn't like them to refuse anyone because they have a sense of humour (yes, it happens)

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Midori

We have had people from the DWP participate on this forum that suffered from fibro. One or two have left after disclosing that.

People forget that the DWP is quite a large organisation and full of different people doing different jobs like helping people into work, making orgs disabled friendly and a lot more.

Sally444 profile image
Sally444

Hi, I do totally agree that for those who are genuinely suffering, the process is frustrating, exhausting and often overwhelming however, there are so many people out there who take advantage of the system that it must be incredibly difficult to work out who is genuine and who isn't. I have had people at work who have claimed to be sick and then are posting their 'weekends away' on social media (more fool them). Unfortunately, those who do lie and take advantage ruin it for those who have genuine cases. It's a sad situation and makes life so much harder for genuine sufferers.

Farmerboy profile image
Farmerboy in reply to Sally444

Yes I’ve seen and heard of people playing I’ll snd faking a sick day to have a long weekend. But little or maybe they don’t know the DWP do use the internet,social media sites to check on claimants as so fo employment services check prior to giving interviews .

Dinkie profile image
Dinkie in reply to Farmerboy

You are so right they do check social media - first question on my PIP assessment - do you have a social media account?

mattjoachim profile image
mattjoachim in reply to Dinkie

Also a question I was asked Do I attent any local social groups or church? I dont and told her that as well

Dinkie profile image
Dinkie in reply to mattjoachim

one has to wonder what one's faith has to do with anything. Our church runs a collection and return home service so that some of the vulnerable folk can attend. If they can't face coming out then the service is available on line. Can't actually see how that relates to PIP unless of course they confess to singing and dancing in the aisle😂 or say in their application they suffer extreme anxiety and can't travel or mix socially.

mattjoachim profile image
mattjoachim in reply to Dinkie

I wondered myself at that question but have since thought it shows if you might have problems with mixing with other people but my PIP was more to do with physical side of things

Dinkie profile image
Dinkie in reply to mattjoachim

Bizarre - one of those questions that will never be answered. I had a paramedic do my assessment and he was strongly of the opinion fibro didn't exist and constantly interrupted me, so in the end I told him if he insisted on asking questions then he should at least have the decency to listen to the response before moving on!

mattjoachim profile image
mattjoachim in reply to Dinkie

The thing is Ifound the PIP assessment more straight forward than the ESA assessment My benefit was stopped after i had my ESA assessment and was left with nothing for 2 months had to sent in sick note again at that time. When i asked my doctor for a sick note she gave me one for 6 months and i remember what she said What are these people playing at as i only just come out of hospital with kidney problems

Dinkie profile image
Dinkie in reply to mattjoachim

The system needs a shake up - not sure what's required but education would go a little way. I wrote to my MP when the age for state pension was increased again and asked for facts and figures for women over the age of 60 who had claimed PIP and whether or not it had actually saved the government money as of course those women are entitled to keep their pip should they still qualify after pension age so it costs the government double! Made interesting reading and I think my MP was quite surprised after he had the figures from his researchers.

mattjoachim profile image
mattjoachim in reply to Dinkie

One of the recommendations make after the 2017 enquiry was get more information from doctors and specialist who deal with the claimants before making decisions They dont always do this. They did this in my case when i did MR in relation to PIP as I thought I was entitled to the higher award After writing to my GP for a factual report Iwas awarded the higher award with an ongoing award They dont like to have to pay the GPs 35 .00 pounds for these reports

Dinkie profile image
Dinkie in reply to mattjoachim

I never bother going to the GP total waste of time so it wouldn't help folks like me. All the GP says it''s fibro related nothing we can do about that!

Farmerboy profile image
Farmerboy in reply to Dinkie

God moves in mysterious ways so maybe the DWP think you me and the attending disabled will do the same, praise the Lord Alleluia. By saying yes I go to church can give the HPs a lot of information about our abilities to stand sit kneel hold a hymn book walk up for communion ect. Mixing with possibly strangers, friends ect. So that’s how I see it .

mattjoachim profile image
mattjoachim in reply to Sally444

Yes there will always be people who take advantage of the system and that goes for any system even companies that take advantage of covid 19 to make money. Why dont the DWP pay more heed and put more weight behind a claimants GP and specialists who give supporting evidence to a claimant rather than go by a report written up by a private assessment company who do the DWPs dirty work for them

Sally444 profile image
Sally444 in reply to mattjoachim

Agreed, I've heard that those private assessments can be awful and sometimes they get it totally wrong, however one of our employees had fobbed off the GP as well who was supplying sickness certificates for him whilst he was drinking and taking recreational drugs on a weekend in Bristol! (Miles away from where we work!) We then realised that GP's can only believe what they are being told sometimes as well, particularly whilst they are doing telephone appointments. There will always be people who play the system, it's a sad fact but it is the same in any part of life and such a shame for real, genuine people who need the help. Life would be so much easier if people were more considerate of others.

mattjoachim profile image
mattjoachim in reply to Sally444

Well I dont think you be successful in applying for PIP if you rang up your doctorand were fobbing them off that you are sick as PIP is harder to get that just this.

brightnbreezy profile image
brightnbreezy in reply to Sally444

I agree - it must be SO difficult for the DWP staff to make the decisions, given the number of real liars.

mattjoachim profile image
mattjoachim in reply to brightnbreezy

In my case the liars were the DWP

Trappedmoth profile image
Trappedmoth in reply to brightnbreezy

How many liars do you think there are? What is the evidence?

brightnbreezy profile image
brightnbreezy

I quite agree with you. I think some of the problem might lie in the fact that the doctors don't know much about this disease, or any of the Auto Immune dis-eases, and seem not to be bothered much by something they cannot quantify. So, of course the staff at PIP etc. jump to the conclusion we are making this all up, also because we remain courteous when speaking to them. It is only because I cannot walk without crutches due to a hip replacement that went wrong, that they are more ready to give me the benefit of the doubt. I feel so sorry for those who have to fight to be heard. I know what it is like to be patronised and then ignored, as I have asked for an MRI for ten years and never been given one, to see what is wrong with the hip joint. Two weeks ago I got a referral from my chiropractor, paid for the MRI myself, and the problem is there for all to see: the metal spike was not cemented in, has moved about with my movement, and my body, cleverly, has deposited loads of granulated material in and around the joint and into the muscle tissue (overdone it), to stabilise the joint.

It would take a brave soul, or two, to begin the process that would bring all this information to the government in a way that they would respect all people with fibro myalgia. I understand that Fibro Myalgia is on the verge of being added to the list of auto immune diseases. Let us hope it is soon - it may then attract more respect all round. I am sorry I cannot do more than agree thoroughly with you.

harmony2 profile image
harmony2

I have wondered. In one place I have heard people bragging about what they got over. But we also know many genuinely suffer and cannot gat others to hear properly. What do you think the fraud level really is? Anything to estimate it with?

ChristineW18 profile image
ChristineW18

I have been denied an NHS pension on the grounds that I might get better!!! I am having to appeal the decision even though I also have advanced kidney disease. I completely agree that the "authorities" need better understanding of fibromyalgia and the issues we deal with every day.

Go and March outside number 10

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

The current fraud and error rate is 3.9% which equates to a net loss of about 7 billion. It is the highest it has been for some time and this includes the covid period.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

turning off replies as the post is attracting argumentative views. Differences of opinion are find but lets not start to call into questions peoples reading choices, background, politics or anything else. We are here to support one another.

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