PIP - Don't you just hate it! - Fibromyalgia Acti...

Fibromyalgia Action UK

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PIP - Don't you just hate it!

29 Replies

I hate claiming any benefits, even though I paid in when I could work. But PIP makes me suicidal through the whole process which can take up to 2 1/2 years for every claim. That means that going through the process has cost me 10+ years of suicidal misery. It's the most degrading process in life. Trying to prove something that can't be seen is horrendous.

I was never the suicidal type...

Thoughts?

29 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

get in touch with our benefits advisors on benefits.advice@fmauk.org and they may be able to help. The condition should not matter as the benefits should be assessed on what people can and cannot do. It is not easy but that's not just the area of fibro unfortunately.

Also Samaritans and Breathe are good places to call if there is a need for a chat.

Hey MrBee, I understand why you’re feeling down. I’m young but have had suicidal thoughts most of my life and fibromyalgia only made it worse.

Accepting help is the hardest part, being an independent person. I’ve been suffering in silence for feer of seeking it.

Now entering my 3rd year of higher education I finally applied for my disabled students allowance, only to realise how much I was hindering myself. To discover I have to apply for different symptoms.

Suicidal thoughts can be minor or pretty deep, if you feel like you’re going over the edge seek help, for 11 years I have dealt with these patterns poorly affecting my mental help further.

I find the ringer on samaritans intimidating but early on emailing gave me a chance to calm down and clear my head.

There are aldo free services you can self-refer for, a local therapy service I’ve been in contact with: eur03.safelinks.protection....

This service is supposed to give you someone to talk to when you need it, not just counselling.

I hope this helps, remember this is a biopsycosocial condition and affects many aspects of life. But people now have a better understanding and you should protect you mental health and quality of life.

Dizzytwo profile image
DizzytwoModerator

Hi there, I'm sure the majority people feel the way you do. But I'm more inclined to be grateful to live in a country that provides these kinds of benifits to help people who need it. Yes I agree it take a long time to go through the process. Again IMO that's only right. The help and the benifit needs to reach those who need it. There are a lot of charlatans out there.

May I just add, please remember our guidelines /rules on posting about politics or other inflammatory subjects thank you.

Momo

Dinkie profile image
Dinkie in reply to Dizzytwo

I'm with you Momo. My husband has various conditions and all the forms were done for him and it was a fairly painless procedure for him. He was granted benefits and we are so grateful that in his hour of need the support was there. Yes he and I have paid taxes and national insurance all our lives and I continue to do so, but in many countries he would have fallen through the net or had no net to catch him at all. Our system may be flawed but at least we have one.

in reply to Dinkie

If he had insurance then everything would have been paid for. That’s what N.I. contributions are. Even though it’s nice to say what you’ve said you’re incorrect as everyone in the uk is paying insurance in the form of NIC. So your thought is sort of an insult!

Dinkie profile image
Dinkie in reply to

Not everyone pays NI. I can't see why you are insulted but I am not going to enter into arguments on it as this is not the purpose of this site.

Painny profile image
Painny in reply to

You are right, even though one might not work this is paid via benefit system. But it’s a different type to those who are in employment. ✌🏻

Dinkie profile image
Dinkie in reply to Painny

National Insurance for those in employment is only paid by those earning more than £183 per week 2020/2021 rates therefore one may work and not have national insurance deducted. If one continues to work after retirement age national insurance contributions cease.

Painny profile image
Painny in reply to Dinkie

Thank you

Midori profile image
Midori

I agree. I'm sure it is a deliberate ploy to deny benefit.

You have to become more bloody minded than the assessors, and persistent to the maximum.

Cheers, Midori

Badbessie profile image
Badbessie

It is an inhuman process, I was helped by AgeUK this time. I went from DLA to PIP after being on DLA for ten years without reassessment. Of course Capita found that despite have four more chronic progressive conditions than I originally had I was much improved. The nurse who assessed me ignored specialist letters etc it was a real mess. However I appealled and won. You must question the system that gave me 8 points on assessment for care then on appeal gave me 28 points. My only advice is do not give up and get as much help and support as you can.

in reply to Badbessie

Last time I got 4 points on appeal 28 points. Then appealed disability and lost that one.

But my point is I’ve had 7 appeals. It’s a gruelling mind ****! Especially on your own.

Painny profile image
Painny

I agree with you, the invisible conditions such as Fibromyalgia is seen in different light; even though one might work they should still be able to claim at least the standard rate, it’s almost impossible to say I have fibromyalgia but there is no effect on my my daily life

I hope you can take the offer from FM UK for further insight into your case

Take care

Sandra600 profile image
Sandra600

I believe the system is too punitive and the excuse used is to deter those who are not really unwell therefore making the unwell struggle so much to be believed.

releasethemagic profile image
releasethemagic

The welfare system has a lot to contend with and its design assumes that claimants are dishonest or exaggerate claims. ESA and PIP were partly designed by the American insurance company UNUM. Google them and you will see they have a long history of denying fibromyalgia claims in the United States and were fought in the American courts to win justice for fibromyalgia claimants.

Sadly many PIP or ESA claims are exaggerated or even false. Since the Government equalised the benefit rate for ESA and Jobseekers Allowance, many jobseekers claim ESA, just because during the assessment period they get exactly the same money but without any requirement to attend Job Centres, saving on bus fares, so more money in their pockets and no annoying interviews about how many jobs they have applied for. 3 months later they are seen by an assessor, denied ESA and transfer to Jobseekers Allowance. I have seen this countless times.

Assessors have to contend with people who fraudulently claim PIP and ESA who claim invisible conditions affect them. These fraudulent claims are backed up with GP visits and hospital referrals because the claimants know these are needed, so lots of NHS time is wasted. For assessors and DWP, the issue is how can they differentiate between the genuine and the false claim? The welfare system incentivises this behaviour because you get significantly more money if you can be classed as disabled rather than just a jobseeker. A PIP award can double a claimant’s weekly income.

For those of us with fibromyalgia, we can get PIP and ESA but we have to be willing to pursue claims to Mandatory Reconsideration and Tribunal. The fake claims tend not to be pursued all the way. They fall away in my experience. We also have to make sure we provide extensive information about how the illness affects us, far more than just simple answers to the claim form questions. You can get lots of help from expert claimants on this site and from organisations like Benefits and Work. It’s not fair that we have to fight to get what we deserve but the system is designed to protect the public purse from the fake claims and we all get caught up in that.

sueshepy profile image
sueshepy

My view on this topic after working 40 years and now suffer with a few chronic conditions is that you should be given your state pension by the time you are 60 years of age and not have to work until you drop. Therefore, PIP and ESA would not be required for some of us.

The money being spent on Assessing PIP and ESA is astronomical !!! I leave my thoughts here.

Dinkie profile image
Dinkie in reply to sueshepy

I have long said that increasing the state pension age will only cost the government more in the long run as those in ill health and those in manual work just physically can’t do the additional years. Would love to know how many over 60s have applied for PIP for the first time.

Midori profile image
Midori in reply to Dinkie

I must agree with you, Dinkie.

I was lucky, I got my Pension not long before they started mucking around with the age thing. I think it is abysmal as some Euro Countries retire everyone at 60, and Denmark wants to reduce their pension age to 61 from 65; While we are going the other way!

It's ridiculous, If they had wanted to raise the age, they should first have lowered the male age to 60, same as women, then perhaps put it up by a year every two years, which would have allowed people to catch up, albeit slowly.

Cheers, Midori

sueshepy profile image
sueshepy

Exactly. Thats a good idea to high light those over 60 having to apply for PIP. I sure this could be done. Perhaps emailing MPs to look into this could be a suggestion.

Dinkie profile image
Dinkie in reply to sueshepy

I have asked my MP but I think they have enough on their hands at the moment so I assume my email is somewhere in a queue.

I have never claimed benefits ever and have worked in high profile jobs full time for 35 years in the City but I have had to take a local job part time for three days a week when I can get out of bed I have claimed for PIP and I am grateful for my £60 a week it’s a recognition that I have this dreaded illness did it stress me yes it did did I feel that the questions and phone assessment was tough yes I was in tears when I had to explain certain things (not going into it) but I felt an utter sense of relief when I awarded for me it was worth it and not because I have paid into the system and will continue to do so until I am in my box 🥰

Dizzytwo profile image
DizzytwoModerator in reply to

🤗🤗🤗

Farmerboy profile image
Farmerboy in reply to

Your award of PIP was not in recognition of your illnesses but how you managed, coped with the PIP descriptiors in a repeatable, safely and in a timely manner.

in reply to Farmerboy

Yes your right I think for me it was a sense of relief no I am not making it up I sometimes have the darkest thoughts like I am 52 is this really the rest of my life I more often than not sit at my desk in tears when everyone has left in pure pain and frustration but that’s enough of my self pity I think if you deserve it or need it you will genuinely get it 🥰

Farmerboy profile image
Farmerboy

So sorry you feel like you do. There are a lot of people trying to claim PIP who don't meet the criteria for claiming but think they are entitled to the benefit. Remember PIP is awarded on your ability to preform the PIP descriptiors in a safe, repeatable and timely manner for 50% of your daily life. It is not awarded on a diagnosis or illness or the amount of prescription drugs you are taking.

Freddie20 profile image
Freddie20

Hello....the same hate claiming and absolutely wouldn't if I didn't need to ... had my PIP award today the minimum on living nothing else, for the first time probably ever I became cross. Like you have worked and have never asked dor help, but I thought about my current life and how this horrible condition has taken most od the joy out of life, and I thought No this isn't right. I am going to fight for what I need, I have had enough of struggling financially, emotionally and physically, it has taken over 5 years to get a diagnosis and I'm exhausted.

Yes it is degrading not being believed and at the age of 57 almost being told you are not truthful, but I'm finding my voice not just for myself but for everyone else who feels unworthy. I know I need help, if I need to fight for it I will.

Good luck, stay strong. X

Dinkie profile image
Dinkie in reply to Freddie20

Ask for a copy of the report and then ask for a Mandatory Reconsideration. Go through the report and highlight any errors. Never say the assessor was wrong or lied just say they misunderstood xyz. If you didn't put in a letter from relative or friend explaining how you manage/don't manage to do certain things ask them to do it now and forward with your letter explaining why you think you should have achieved more points. It's worth asking for the MR and some do actually get an increase in their award.

sueshepy profile image
sueshepy in reply to Freddie20

After my first PIP assessment I was given nil points despite all medical evidence provided. I was gobsmacked when I read the report there was so many things that was wrong and contradictions. I submitted an MR along with my hubby's observation and was awarded 10 points. However I appealed as I believed I should have been given more points. The Tribunal awarded extra points on the fact that fibromyalgia and tendonitis is very prohibited disease. Hope this helps.

Are you moaning? sounds like it. The DWP do not make it easy but there is help out there to complete the forms...not to mention supportive Doctors and Consultants...

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