PIP and relapsing-remitting fibromyalgia

WMH2001

Hi everyone. 

Among my various health issues the one which actually disables me most is fibromyalgia, this was diagnosed earlier this year following a range of tests and assessments. I have been advised by several nhs staff, both nurses and clinicians that I should apply for PIP, I do feel this would help me in several practical ways directly connected to my disability but I have a serious concern as follows. …

Fibromyalgia is a relapsing and remitting condition, so for example on a bad day I can’t even get up or out of a chair to do such important tasks as walk to the kitchen to take my medication, or eat, or get to the bathroom as the pain and exhaustion are so bad, yet on parts of other days, or occasionally entire days, I’m pain free and with the energy to live a fairly normal life. The professionals I’ve spoken to advise me to complete the application form as on my worst day, and indeed the Citizens Advice guidance says the same, however …

I recently watched episode 8 of series 5 of the BBC’s Fraud Squad and a section featured a couple accused of benefit fraud, they were investigated, prosecuted and convicted. A key piece of the evidence shown was undercover video surveillance footage showing the female carrying shopping bags from her car into her home, the investigator stated that he considered this to be evidence of her claim being fraudulent. He went on to state that on interviewing her she stated, exactly as I said above, that she had been advised to complete the application as on her worst day, and that the actual question wasn’t worded this way, therefore it was a fraudulent claim. 

So am I even safe applying for PIP? The possibility of being subject to investigation for benefit fraud due to the relapsing-remitting nature of my disability is of such a serious nature that it would impact my mental health very severely that the trade off doesn’t seem worth it. 

Any experience or actual inside knowledge would be very welcome

Thank you

marcia_

 Your condition does not have to be present constantly to qualify.I have epilepsy, I'm not having seizures all the time. I might have 4 over 2 days then none for a month and I qualified. 

nannytone_2

You should complete the form honestly, giving example of both good and bad days

KxMx

If you cannot do a task safely, reliably, repeatedly and in a timely manner, then for PIP purposes you should be treated as unable to do that task. 

prettyandfluffy

There is room on the form for a descriptive comment so you can say something like: "On a good day I can ...XXXX" and ""On a bad day I can/cannot .... XXXX".  You could also add a comment about typically how many good/bad days you have, how long flare-ups last, what triggers it etc.

peteuk

You have said your diagnosis was earlier this year, to apply for PIP you should have a condition for 3 months prior to application and it is likely to remain for at least 9 months (which it will)

As previously noted you need to discuss your good days and bad days, and the bad days need to be more frequent than the good odds. For instance if you are normally effected say 3 days a week, then you've more good than bad per week, but then if you have a flair up and it takes away two weeks and your having these monthly at present, then you've more bad than good (over the month) 

Try and keep a dairy whilst you apply of good and bad days and then use this to highlight during assessment, even if its just writing G,B,VB (Good, Bad, Very Bad) on a calendar. So that way you can say in the last two months I’ve had X good, X bad and X very bad. 

Good luck. 

poppy12345

peteuk said:

You have said your diagnosis was earlier this year, to apply for PIP you should have a condition for 3 months prior to application and it is likely to remain for at least 9 months (which it will)

Having been diagnosed with fibro myself 10 years ago it took 3 or 4 years for me to get that diagnosis. It's not an easy condition to diagnose and many various different tests are needed first to rule out other conditions because it does mimic other conditions. For this reason i would think that the OP had symptoms for quite sometime.

Although PIP isn't about a diagnosis anyway, which i'm sure you're already aware of.

Alice_Holt

There are a couple of important considerations for an award of PIP:

i) Your condition / abilities on the majority of days over a day - so PIP does allow for fluctuating conditions, 

ii) Whether you can do the PIP activity reliably - i.e to an acceptable standard, safely, as required, in a reasonable time scale.  So if there is part of the day when you can't do the PIP activity because of pain or exhaustion - then you should be counted as not being able to do that activity that day. 

A PIP award is points based, and you need to fit your condition around the PIP activities and fully explain why and how you can't do the activity reliably on the majority of days. 

(Cit A does not advise just to write about your bad days).

Before ordering the form, please do some research on PIP. Fibro can be a difficult condition re PIP, as sometimes the assessors fail to take in account reliability / fluctuations, and focus on your 'good' days. Your form, therefore, needs to be as compelling as possible with full details of the variations (both during a day, and from day from day) with many examples to make it vivid for the DWP decision maker.

Start your research here:
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/how-decisions-are-made/

https://www.fibromyalgiaresearchuk.com/help-with-pip-forms

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1144278/pip-assessment-guide-part-2-assessment-criteria.pdf

https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-health-conditions/claim-pip-for-fibromyalgia

I would suggest seeing if your local advice charity can help you with the PIP2 form. If they don't have capacity then the Benefit and Work guides are excellent, but membership costs c£20 a year. You will need to add additional sheets to the form, as the boxes on the form are too small to give a complete and compelling  picture for the DWP decision maker.

Rubyroobs

I never advise people to complete the form just based on their worst day especially if that happens infrequently. i'm surprised CAB advise that. As others have said I would describe a bad day and how it affects you but also how often you have these days. A pip descriptor must affect you for at least 50% of days to apply. I have had clients awarded it for fibro but I also think good medical evidence is key to success.

Alice_Holt

Rubyroobs said:

I never advise people to complete the form just based on their worst day especially if that happens infrequently. i'm surprised CAB advise that.

          Citizens Advice do not advise that.

         Look at the Cit A links I provided.   Where does it indicate that the form should be based on the worst days?


         The OP has clearly misinterpreted Cit A 'guidance'.
         They should,  as suggested in my post, understand how PIP works, or seek accredited advice, before attempting to complete the PIP2 form. 

Jyana

Agree with others who have stated that it would be highly advisable not to fill in the form describing only your bad days, that would most likely lead you to fail the assessment. For example, if you say that you cannot get out of bed all day, or in your case the chair for meals or visit the bathroom, then they will question how you can go to doctor's visits or do your shopping. Therefore, they will assume just you are lying about the former and take the latter as your usual activities instead.

Do not give them any reason to question your abilities by giving them a clear picture of your good and bad days, this is the only way to make the assessment fair for yourself. At the end of the day they will only have a short time to spend on each application, so you need to make it as clear and truthful as possible so that they can grasp your situation as easily as possible in that short time. 

ETA: words, brain fog day