PIP Appeal: Just had a letter from DWP... - Fibromyalgia Acti...

Fibromyalgia Action UK

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PIP Appeal

PenelopeClearwater profile image

Just had a letter from DWP, after chasing them up, as they should have responded by 23 April and they did not. They have said that I’m basically fine and want the appeal thrown out.

They say that if I have a new condition (fibromyalgia - which I advised them and sent the consultant letter), then I should do a new PIP application.

My Dad is helping me, but I don’t really understand it all. They make me feel like I’m just lazy and lying about everything. I’ve always been a hard worker and would be working now if I could.

I was feeling so much more positive this morning, but now I’m so upset and let down yet again.

Is there anything I can do?

68 Replies

And had a few appeals and eventually won it all be it the lowest rate but also got low rate mobility to.I did eventually use a advise centre who without I am not sure I would have won anything. So my advise it to use them as it is free and they are extremely experienced.

Good luck and don’t give up. X

Thank you - I’m so green to it all and as you know, the process is overwhelming! If I need to reapply, I shall definitely use one of the advice centres 🥰

You just have to be extremely honest in what you are able to do on a daily basis. Do you need help in housework...do you need help with cooking ....do you need help in the toilet area...bathing etc. the whole point of PIP is to assess what you are actually able to do and what you cannot. It is that simple. They cannot deny your claim if you have plenty of evidence from your doctor or consultants in letters from them. Do not be scared to apply and apply again if they turn you down the first or second time...they are just doing things the easy way and to see if you are really persistent in your claim. I was turned down and claimed again with all my evidence included and they accepted it. Good luck pet.

Thank you 🥰

Hi I had no luck with Pip and to be honest I gave up. As I’m working (but wanted to cut my hours) I felt this went against me and the process caused anxiety so I stopped. I know other people have been stronger and kept going and have got results. Good luck with your appeal 😊

Hi Sam988I too gave up, after fighting them for almost a year, I am still working but reduced my hours dramatically, due to pain. I will eventually reapply.

KaliAka profile image
KaliAka in reply to Sam988

I tried pip and was told it was out of the month to apply .I had sent fairly quickly and had no idea of time limit.i also wanted to cut hours at work .Phasing back to 40 hours.Good on you Sam, fighting back to work it isn't easy. I'm getting there 🙂.

It’s like a full time job just to go through the process! I’m not surprised so many people are able to take advantage of the system - you need to be well to understand it all! 😅


Well I have applied for PIP, a new claim, is yours a new claim? How long before the DWP contacted you by post?

I have both mental illness and fibromyalgia and other conditions too so I'm really hoping to get some help. Like you I have worked hard in full time employment, pre Fibro!!! I have been in work since I was 20, I'm 41 now.

I need financial support, I can't walk too well so I'm continually getting a taxi home after my bus journey home from work. This is getting expensive!!!

I applied online, I think you can update your claim if it's done online. I'm glad your Dad is helping you. I do know how you feel, because you can't see Fibro people think you are making it up... especially when I'm smiling through your agony.

Try not to get upset, I'm really sorry that things are so bad for you at the moment 😔

You can stay true to yourself and fight the DWP for something you deserve. Re apply and get all the evidence you can downloaded.

Enjoy the bank holiday weekend.

Take care Xx 💕💕

If you are working go online to gov.uk and access to work let your managers know you have contacted them they can help with your taxi fares to and from work they did it for me for 4 years then we had pandemic they will also do a report about your conditions and if you need any extra help in the work place this will also help with pip app

Thank you for your reply, I'll look into the taxi scheme, I'm find it strange to putting my hand out for help!!

My employer has been asking me if there is anything that they can do to help. I'm not sure what to answer as they have reduced my hours to 4 days a week with a great shift pattern. I have a coccyx cushion which I sit on at my desk, I'm a receptionist. I wear arthritis gloves all day at work. I'm not sure what else they can do for me? I have the stairs to climb at work which nearly kills me. The staff room is upstairs but I make tea and coffee for myself and my boss. Yesterday I hardly went upstairs at all and the times that I did were agony, I'm stubborn with it too!!

Do you work? What provisions are you aware of for the workplace?

Yes I will be taken redundancy in 9 weeks cause if my health it has gotten to much for me now I have been pushing myself since I became ill 8 years ago but cannot do it any more the access to work peoe will come do a report and advise what you need to do your job I have an electric desk so it goes up and down an electric chair made for me not off the self I have Ergo arms fitted to my desk so it takes the pain off my shoulds I have a lot of different programes on my computer and change in my working hours breaks when ever I need them reduced targets work buddies to help me when needed and of course taxis to and from work they will be able to sort the taxis first they will send a form out you just need to take it to your doctors to sign that public transport is not suitable for you then 3 estimates from taxi firms or you can get a receipt everttime you get a taxi and they will refund you once a month which I found easier but with the cost if things today it will be easier to have an account with the taxi company and let them bill access to work instead that way if you don't have any money you can still get to and from work none of this affects your pip but it can help with applications cause the dwp and goverment are showing that you already need help

Hi Jam1861

Sorry for the delay in replying to you. I have been very stressed and I had a really bad flare!!!! This week has been really bad!!

I've also been waiting for my Personal Development Review which I had yesterday at work.

Following your good advice I mentioned the Access to work scheme and mentioned to my employer and they made a note of it. If they want to support me then hopefully they'll consider it.

Do I need to make the first move? I have introduced the scheme to my employer, what's next? I'm so new to all of this I don't know what to do?

Sending Fibro hugs take care Xx

Take care

Yes applybonline at the goverment website and then they will also contact your employer I work for one of tge big six energy companies for 15 years and they tried to block them coming in so the union told them straight they cannot stop them coming in and if they have done all tgey needed to do there should be no issue well we found they had done not ine thing right but access to work sorted it the taxus you don't need any intervention from your work except to get a signature from your boss to say what days you work and 3 estimates from taxi companies as to what the fair will be and a contact at tge taxi place to have an account opened for you

Jam1861 profile image
Jam1861 in reply to Jam1861

But first step gov.uk/access-to-workApply here it's is easy and quick to get it all started

Maybe see if universal credit can help you , they are helping me as I can’t work. my husband does loads of overtime for us to keep our heads above water, universal credit have helped so he doesn’t have to do as much . I hope this helps and you get some help to pay for your taxi’s. Take care and stay safe x

Yes, mine’s a new claim, too. It’s very alien to ask for help, isn’t it?!

I can relate to struggling with walking and having the mental health issues - it all comes bundled up under the “fibro” banner and then you’re just left to deal with it 😅

I’m so grateful for this forum and FMAUK - just so helpful.

I hope you manage to get yours sorted - it really is a battle just to cope 💙

Hi Penelope I had problems with them as well. My GP told me when I complete the form to put everything down as a really bad day, that you dont have many good days,

I completed my form stating that I struggled to walk to the end of the cul-de-sac where i live, the woman who came out to see me put in her report that i could walk over 50m, the end of the cul-de-sac is 2 houses away, approximately 15m,

when it came to the review, i filled the form in again I had got a lot worse, I had had a bad reaction to the covid vaccine which has left me only being able to do about 1/2 an hour a DAY of normal daily activity, the fibro pain is more severe, and she said on her report that she had previously put me on the lower rates because she thought that i was going to get worse and according to her, i hadnt. how anybody can state that they gave you a lower rate for something that they (unqualified to make that prediction) thought was going to get worse is unreal.

my GP said it was a really unfair system and that those who deserve it dont get it and those who know how to play the system get everything.

If you have applied for an appeal, they will also try to trip you up, they will ask something you may consider minor but will use it in their decision. they said to me, 'you have cats, do they have a litter tray' then ask, how you manage to empty/change it. if you say it is easy to do, they take that as you can do normal daily things easily. the system is against you. Dont give up, the people doing the assessments DONT HAVE THE SLIGHTEST IDEA of what we are going through.

I get this all the time. You are right, unless they show you any VALID ID Then you need to assume that they are unqualified? The assessment process states that on the day of the assessment the Assessor has to be a Qualified Medical Practitioner in a recognised Medical Certificate, and also be registered on an appropriate Medical Register, and when challenged will show a valid ID.

Next time you ask for a copy of the report, or if you have already been assessed and are not happy since things were stated or in the report that never happened as it was "THEIR OPINION" ask them for the fully justified report used to assess you that was sent to the Decision Maker as I cannot separate what is Your opinion and theirs, please include the signed declaration from both since I do not see any Medical facts used in either report?

Fibromyalgia in its self is enough to warrant the correct assessment from a person that should know better, To make the statement only shows that a qualified person would not have made that statement since they have a duty of care, and also need to quantify that statement with there "EXPERTISE" that has allowed them to make that statement. If any illness is on your Medical History then you should have the same content in the Assessment report. Why do you think that none of the assessment reports used by DWP and PIP's are not in your medical history? Because it would have to be fully justified, which it isn't?

Latest letter from Capita, says that the assessment report is for the decision Maker and you need to ask them for a copy, AND IS ONLY A RECOMENDATION TO THE DECISION MAKER, if this is the case why is it being used? What are we paying for?

Jan1964 profile image
Jan1964 in reply to onebigvoice

Hi onebigvoice,I have researched into this any the assessors are all medical professionals, be it doctor, nurses, paramedics or physiotherapist. No unqualified people are employed to do the assessments. The decision makers are office staff at DWP and therefore the medical needs to be clear and in layman's terms. You can ask the DWP for a copy of the original assessment paperwork prior to appeal.

I was awarded from my second application for fibromyalgia, but also have other conditions which mingle in symptoms. The most important thing is to be calm and to point out what you find difficult ie grip. The first assessment said i had adequate grip as I drove a car, I had forgotten to say I wear grip aids in my automatic. It worth checking the medical with a fine tooth comb as sometimes we forget bit of information that make a big difference. The bit about journeys doesn't consider how you travel, bus, taxi etc. Just if you can go out alone. Hope this helps xx

Thank you ☺️

Your reply and the subsequent comments are really useful - I think I was too mild in describing my condition and when I had the phone assessment, I had made sure I was prepared, in a comfortable reclined position, had all my paperwork around me and had my Dad there to support me, so a huge part of their decision has come from the fact that I was able to speak to them coherently on the phone. They didn’t see that I had to fully lie down during certain points, flip through my notes, and have my Dad quietly prompt me…!

I think it will come down to a second application and I will make sure I employ all of the advice I’m getting from this fantastic forum 💙

Totally agree with you @catherine19611 all my experience has been similar but although I’m struggling I’m persevering with Appeals with the help of a friend , don’t give up anybody , thank you for all comments this is helping to know we are all sufferers of this chronic pain & we are not “making it up “ I would not wish this on anyone . No one realises what 24/7 chronic pain is like unless you are a sufferer , it never goes away , it gets worse , we smile through it, we grin and bare it .

I have Chronic Migraines, Fibromyalgia, Interstitial Cystitus, IBS, very chronic insomnia and couple of other more minor conditions like Raynauds. I have had mental health problems for 30 years where I was being treated in the tertiary level of care service, which is the highest level of need and they still took away my benefits when they moved from DLA to PIP. I had to go to tribunal the first time for DLA I couldn't face it all again for PIP. They treat you so badly.

catherine19611 profile image
catherine19611 in reply to Cat00

this happend to me as well. I think it was 95 people who committed suicide after this happened to them as well, they just dont care

Cat00 profile image
Cat00 in reply to catherine19611

They are ruthless, I have charts that I've had to keep for neurology going back 15 years showing I get migraines more than 50% of the time and that didn't count for anything. I've never been well enough to work and yet loads of people who function enough to have jobs qualify. I just couldn't cope with all the appeals, not again. I have more conditions than when I applied last but I think I handle them a bit better than before. I just can't face it, they make you feel like a fraud.

catherine19611 profile image
catherine19611 in reply to Cat00

I know what you mean, my mother was paralysed from the chest down, could not even sit or stand up by herself, we applied for DLA as it was back then and she was turned down 7 times

Cat00 profile image
Cat00 in reply to catherine19611

OMG that's still shocking even with my rock bottom expectations of them!

It’s just appalling, isn’t it?! I’m so sorry 💙

It’s awful, I am so sorry you’ve had to go through that. It really does feel like they just want everyone in employment and if you can’t manage that, then you don’t really matter.

I hope you’re doing ok - thank you for taking the time to respond to my moan off!🥰💙

I hear Scotland's developing a kinder disibilty benefit system, maybe it will trickle down to England!


In the first reply they should have given you a statement of reason as to how they arrived at their decision. They will quote you all the Acts and Laws that they use for assessment, ( that they want you to know)

BUT, the first rule of assessment is you fill in the form? In doing this you outline things that affect you and also send, MEDICAL INFORMATION and supporting letters which can also be on headed paper if it comes from YOUR HP, HCP, or Medical history coming from your GP.

This is sent to the Assessment company BY THE DECISION MAKER, since he normally has no medical background, and needs clarity about the conditions that effect you. Other wise they would not need the skills and expertise of the assessment company? There are other things involved in the system but for basic needs you don't need to know. firstly, that the assessment has a contract to produce a fully justified report, showing what medical evidence was used to assess you, what is Medical fact and what IS THEIR OPINION, if statements are made that are outside their normal remit. ( comes under the laws of Candour, and third party contracts. )

The report is for the Decision Maker, and if you want a copy you have to write or ask them for a copy. ( This is not correct since the Data Protection Act says I can see any thing written about me and held on File by the government, easy version.) You are entitled to a copy and unless the report is fully justified and signed normally on page 8 of the report form to say they have written the report and it has separated what is medical fact and is what my opinion, and shows my job title and Valid ID so that should it be asked for by the court that it matches the Valid ID shown at the assessment including the ID Number on a Practicing medical register.

If you have all of this, then please send me a copy as I have never seen one or been able to get the Secretary of State to produce any valid ID of either the Decision Maker, or the ASSESSOR USED TO ASSESS YOU. this renders it useless.

Ask a simple question: Under the Freedom of Information (FOI) act, can you send me the information you used to assess me from the Decision Maker, and also send me a copy of the Assessment report sent by the ASSESSMENT COMPANY, of the same standard as the forms and information I have sent in, and in the assessment report, that it is fully justified medically, since the Assessor had to be a Practicing Medical Practitioner, who is registered on an Appropriate Medical Register on the day of the assessment.

This alone is enough to render it useless. The other problem I have is that you believe that you have at least won some sort of rate?? But what if you were entitled to high rate for both and they have given you standard rate, you would believe that on a rethink, at least they conceded something? All they have given you is the "carrot" and since you have had nothing before you would except and GIVE UP because its to much hassle.

How many have said its to much and given up? EVERYONE.

ALL I ASK IS: Look at you report and see if it contains ANY of the above, and this is only scratching the surface of people that the odd one thinks that they have at least won some thing, where as there are 20 cases that have given up?

the same assessor told me that no medical evidence was taken into account because my GP had NOT responded to the request for information, I contacted my GP who said that they are given a certain amount of time to reply to the request by law, i think he said it was about a month, he looked in my records and the request they sent to him had been received 6 days before they expected it back with all of the information on it. I contacted the assessors with this information and they said that they would extend the date for the information to be received, and send me another appointment for the actual assessment, they sent it through for a date and time I had already told them that i could NOT get there for, so i phoned them and they said that they could NOT change the appointment as 'I had already cancelled the previous one', I HAD NOT cancelled it, they had said they were extending it as they had not got the information from my GP - at no point did anybody say that it was being cancelled. the person i spoke to the second time said that there was nothing they could do about it and if i did not attend the appointment they would send the information through to the PIP people that i missed the appointment, even though they knew before they sent that appointment that there was no way i could get there at that time or date.

It really is appalling the lengths they seem to go to. I hope you manage/d to get it sorted 💙

Again your job is to fill out the forms as best you can. Within the form you can add (OR NOT) Medical information and people that treat you with all the details about them INCLUDING WHERE THEY PRACTICE, because they are medically qualified, you also give THEM PERMISSION TO CONTACT THEM SHOULD THEY WISH TO CONFIRM DETAILS THAT YOU HAVE INCLUDED ON YOUR FORM. Now why is this?

Because they do not have access to your medical files since they are not medically qualified... AND while on the subject of MEDICAL..... Its not a "medical" its an access to benefits. BUT when asking about a medical condition they then need your permission to contact them and be able to prove that they are medically qualified in order to release information to some one on the other end of the phone who says they are a Doctor, Nurse, Paramedic, HP or HCP?

ALL these jobs would realise that under the Duty of Care what they need to have inorder to write a report about anyone when they were registered with the appropriate Medical registers. If they were still registered they would know this, and if they had retired or just because of ill health given up work they would have realised that if you still wish to be called by your title you have to keep up the FEES and KEEP UP WITH THE UPDATES OF THE CERTIFICATE YOU HAD. You can still be called a doctor but have finished work by ill health but to become an assessor it is down to the Assessment company to make sure that they have all the necessary certification up to date, and may state you can be employed with us and get your certification up to date later , because its not a Medical that you are giving , but an opinion of conditions affecting the claimant that the Decision Maker has no medical background would not know?

It therefore becomes A RECOMENDATION TO THE DECISION MAKER, and because the assessment company have arranged the assessment that they ASSUME THAT THE PERSON GIVING THE ASSESSMENT FOLLOWS THE RULES SET OUT BY THE THIRD PARTY RULES. ( Candour) The have read the rules of the main contractor (DWP) and will supply a MEDICALLY JUSTIFIED REPORT.

So this:

Hi onebigvoice, I have researched into this any the assessors are all medical professionals, be it doctor, nurses, paramedics or physiotherapist. No unqualified people are employed to do the assessments. The decision makers are office staff at DWP and therefore the medical needs to be clear and in layman's terms. You can ask the DWP for a copy of the original assessment paperwork prior to appeal.

ON PAPER. Have you actually rang the medical board that supports their certification? i.e. NMC or GMC register? You can either go on line and look, for instance check your HCP or GP is on the register, it costs you nothing or you can ring them again google the register and it also gives you the contact number depending where in the country you are.

Then come back and tell me what you found about the person that assessed you or the decision maker that made the final decision?

and this:

the same assessor told me that no medical evidence was taken into account because my GP had NOT responded to the request for information.

This is not your responsibility you have done your bit by getting the form back on time. What about: You get 1 month to reply and they get 20 week to say no? Then ask for an extension or you to do something else and chase them for a reply?

Sorry but there are still many holes in the assessment system even before you get to the M R or FOI part and then have a Tribunal that is supposed to give a fair playing field to every one would act as though these questions have never been asked before, is time and money wasting at its best.

AGAIN I STATE NO ACCOUNTABILITY. How many have actually got compensation from the assessment company once the report was overturned? NONE, Why because they state we have no access to the Tribunal system since the report is only a recommendation to DWP and it is the decision Maker that makes the final decision?

You wrote the report that is supposed to be fully justified, medically, since the Decision hired you for YOUR EXPERTISE? Take it up with them? was the reply.

Thank you - this is really useful info 🥰

I really can’t thank you enough for taking the time to detail all this - I will certainly be getting back to them about getting a full copy of the assessment. 💙

It is nothing you are not already entitle to as a minimum. All you need to ask is the reports and information used to assess you including any information used from YOUR ASSESSMENT REPORT at the same standard as the information you have supplied, since it is not my responsibility to contact the people that treat me, since I have done this in any support letters I have sent and most are on headed paper proving the standard of the attached report, where as your did not?

Oh Penelope. Another blow. But you are getting help from your dad and good advice from your friends on this forum. Stay strong. A warm virtual hug. 🌺🐈

Thank you 🥰

It really was the wrong day to receive that letter! 😅

But I am feeling much more positive today and I am overwhelmed by the response I’ve had - so much love and brilliant advice 💙

Pip is given if you cannot do certain thinks that they list..they don't care how ill you are only what you cannot manage to do...if your dad has to do lots of things for you and cook for you ect..then you may get points...and you need so many points to qualify.mplus when they ring you up they try to catch you out..I copied what I had written for questions and had it ready with me..but she still lied in letter that came back..I can hardly walk as had lymphoedema for 2yrs but new doc only just diagnosed...doc 2yrs ago did and said nothing I can do for you...it's just a joke..also have letter from dad stating what he dies and even gave him there to speak... One is can you get on and off of toilet..mine is low and with legs and knees on bad days agony...I was given seat rise from hospital but getting on and off still painful..have to grab sink and wall... So points for that..also getting in and out of bath..have got step rise but still gotta get leg over..had to fit wall grip..but cannot get up and down in bath..do no more baths..I'm terrified of falling and the pain...as I say you have to say bad days..not good as they twist it..it's sad when you have to say and do this but otherwise you get nothing and I cannot work as not just fibro but arthritis all over..doc says you got lots wrong with you..but pip don't care as I say what you got..just if you cannot do things..I don't use oven anymore cos of risk of dropping or burning myself...hard to chop or cut food.. use microwave dinners..this is in points section too...I got basic pip and nothing for mobility..they are not very nice..good luck

At least you got a phone call, my assessment was made by a woman who ignored everything i put on the form, a MRI report on severe spinal damage from my GP, and no actual contact with me at all. she just ignored everything i had put, it was a complete waste of time filling the form in, and her decision is until i think it said 2026

Can you go to appeal as that is just disgusting...I know one lady who turned up neat and clean and they said well you take care of yourself well and it went against her..not that some may have helped with all of this...and why would you not want to be clean.. I think they just try to find anything to rule you out.also they asked my friend for something out of her bag and because she could do it so easy they said..oh getting your hand in bag and Searching is no problem to you..I said if I have a face to face I will make my husband carry my bag and he can search and go scruffy and dirty ..he laughed and said well I won't he sitting next to you..but that's how it makes you feel...plus I will take a cushion as most chairs too low or uncomfortable... I hope you appeal and get help.x

Thank you - I have definitely learnt the hard way. I will make sure I am armed with all of this incredible advice next time.

It’s just awful, given how exhausting this condition is, then having to fight for absolutely everything!

I couldn’t be without this group!💙

marilynmcl profile image
marilynmcl in reply to Smoggie1

Can you ask the Occupational Therapy team in your area to come out and see if you can have a shower or wet room put in?

Smoggie1 profile image
Smoggie1 in reply to marilynmcl

She was askedfrom rheumatology dept as specialist said he can do nothing for me. She has spoken with me on phone said she has done all she can do for me.bath seat across bath. toilet riser and camode in bedroom as no upstairs toilet.x

Hi, did you get any points? Do you have other conditions or just Fibro- might help if you can add other diagnosis to support claim

They marked me really well on areas by just contradicting what I told them: I said I can’t walk or travel and they said “I have decided you can walk and travel”… based on a phone call - it’s baffling!

We contested the points and did our own calculation based on what the points “should” have been… the appeal isn’t over, apparently, I just have to wait to hear from the tribunal about an appeal hearing - it just goes way over my head these days!

Thank you for the advice! I’ll discuss with my doctors if I need to reapply (which I probably will) x💙

I feel for you and any others going through assessments and tribunals. I've had to do plenty and they are so oppressive and degrading. Even with the help of a good advocate who accompanied me to any appointments and helped complete forms it was still extremely hard depressing work. I could hardly form sentences at the time. I always asked for copies of statements from assessment appointments or tribunals. Atos - amazing how much of what I said was bent or completely lied about after every one. The last assessment done by a mental health nurse who lives in my home town! I'd hate to have been her patient. She was vile. I always managed to get through on appeal. Sometimes its like the Assessor has been told to fail you at the first hurdle to see if you give up.

Sorry a bit of a rant there.

I'd say try and find someone who has helped others complete the forms. Fill it out as if its your very worst day. Don't worry about sounding like you're hopeless and pathetic at what you can't do (sometimes we fall back in to trying not to sound needy). Always take someone with you to appointments / tribunals. It helps.

I wish you well and keep on at them.

Thank you so much - I think I probably wasn’t negative enough, as you say. I’m lucky to have my Dad helping me, but if I have to reapply , I’ll speak to another friend of mine who has gone through it. I’d have asked her for help before, but she was having a bad time with her health when I applied initially 😅

I have definitely learned through my naivety that you have to play the game to get what you actually deserve… 💙

waylay profile image
waylay in reply to Sallybones

DO NOT FILL IT OUT AS IF IT WERE YOUR WORST DAY. This is terrible advice but I keep seeing it given out. It can easily work against you. Say you fill the form out as if it were your worst day, but then on the assessment day you're having a pretty good day (dammit!). Some assessors will already assume that you're probably a faker or exaggerating your symptoms, so any mismatch between the form and the assessment will make them more suspicious.

There are two ways to do it.

1) Simple, best if your symptoms don't fluctuate much.

On the form they ask you to describe an average day, so that's what you do.

2) More complicated, but if your symptoms fluctuate a lot, this way is more accurate.

As an example, let's say we're answering how far you can walk. The answers for this are (check this as I may not be right):

I can walk:

a. More than 250m.

b. 100-250m.

c. 50m-100m.

d. 20-50m.

e. Less than 20m.

To get points for a descriptor, you have to be UNABLE to it for at least half the time (51% of the time or more).

- That can mean more than half of the day, >4 days per week, >16 days per month, etc.

- Example: I usually have 1 better day/week, 2 avg days, 3 bad days & 1 worst day. Now describe what those days are like:

Better days: Can walk 100-250m.

Avg days: Can walk 50-100m.

Bad: 20-50m.

Worst: Can't even stand up without help.

Hmm. None of these types of days are more than half the time. What now? Luckily they have a rule for this: Add together two types of day that you can't do a descriptor. Do they sum to more than 51% of the time?

3 Bad days for d. + 1 Worst day for e. = 4/7 days = 57% of the time I can't do descriptor e. Make sense?

There's another important concept that you need to know about here: Reliability. Many assessors and some DMs skip Reliability because they're rushing to finish the report and it takes too long. which means theyre in such a rush to finish your report that they skip it.

What is Reliability for? How do you decide which descriptor to you fit into best if your symptoms fluctuate a lot? How do you convince the assessor and DM that you're right? If you can't do the descriptor Reliably, then you can't do it at all.

What does Reliably mean?

There are 4 parts of it: You have to be able to do the decriptor:

- As many times as a non-disabled person would be able to do: This will vary for different descriptors. For the example above, say you need to be able to walk 100m. How many times would that need to happen in a day? OK, you need to go to the shop (50m away) to buy food. Would most people need to be able to walk 50m a second time that day? Yeah, probably, to post a letter, or meet a friend, or catch a taxi. So as many times as necessary is twice per day. Can you walk 50 m twice in 1 day on more than half the days? No. Why not? I usually have a back spasm after walking 50m, and that means I can't even stand the rest of the day; I definitely can't walk another 50m, so descriptor d. fits m

For a different activity: Let's try eating. How many times would most people need to be able to eat in a day? 3 meals is normal, right? Can I do most days by myself? No. I have hypersomnia, so on most days I sleep 11ish hours and wake up around 10AM. Eat breakfast. At 12PM I fall back asleep for 9hrs,so I wake up at 9PM. Lunchtime. At 10:30PM I doze off again and sleep for 10hrs. Uh oh, it's the next morning and I never ate dinner. Hmm. What if I set alarms to wake myself up? Damn. Alarms don't wake me up unless they're air raid sirens. Well then, I can't eat meals as often as I need to per day without prompting from someone else (Wake at 10, have breakfast. Fall back asleep. Someone wakes me up about 6hr later and gets me to eat lunch. Doze off again. 5hr later, someone wakes me up again and gets me to eat dinner. Ah ha! So I can eat 3 meals per day if I have assisdtance from someone else to do it. What descriptor is that? b.

Hope this makes sense. Been awake a very long time. Delete if not? Will finish after nap.


Sallybones profile image
Sallybones in reply to waylay

Ideally yes but in my experiences they don't want to know about average days and many people applying have dire days every day. All different. If you mention the next day you can walk further. The furthest distance will be put down as your everyday ability.

May I just add that you can ask to be assessed in your home environment, which should be available again now restrictions have eased.

waylay profile image
waylay in reply to Sallybones

Agreed. Assessors are often crap.

I have had the same they sent me out a new form to fill in and send off and they decided to lower my rate so I appealed and lost the appeal . I have lost £118 a month which is a lot of money for me , they don’t understand how much pain you have or how it affects you mentally. I hope they have problems one day and get the same response we get . I hope you feel ok soon , don’t let them get you down . Take care and stay safe xx

Thank you ☺️

It really is so disheartening and you’re right, they simply do not understand the condition and what it entails.

I hope you’re doing ok 💙

I've just won an award, standard rate for care and mobility.

Don't lose heart. I know how hard it is, but the people who persevere will eventually get PIP if they have the medical evidence to back up their claims.

I've applied twice myself, and I also have to keep reapplying for my son. It is incredibly draining and a thoroughly dishonest system. I've had multiple cancelled tribunals and two tribunals that went ahead. These are petrifying events.

But I did want to tell you about my recent experience, where I actually got it. It was the most straightforward application I've ever had.

A telephone assessment was booked for me by the health assessors. I rang up the centre and asked them to make sure that it was all recorded. They told me that they didn't have any of those kind of slots free! I insisted that they weren't following government policy and asked for their complaints procedure. That came by post, but I hadn't even started to draft the complaint when I got another letter off them, giving a fresh date for the assessment.

I prepared accordingly, assuming that they had given me a slot which would be recorded. The morning came and I asked the assessor to confirm that this appointment was going to be recorded. She didn't know anything about that and said she couldn't go ahead without speaking to her manager. Then she rang back to say that she had no ability to record, but that I could if I wanted.

So I did - got her to state clearly who she was, and that I had her full permission, and recorded it on my ipad, It took 2 hours, 20 minutes. The DWP's award letter was the most honest one I've received to date.

As the DWP generally follows the health assessor's findings, I would recommend doing this every time. It may delay your assessment appointment, but is well worth standing your ground. Face-to-face appointments can also be recorded, although the rules are different.

Thanks for this! Really great advice 😁

I’ve recently had run-ins with my (now ex) GP surgery, as they were not following legal procedures or government legislation… it genuinely never occurred to me that the same could be said in this instance, but their responses just seem to be full of untruths. I will make sure I have ALL the info at my disposal next time around.

Thank you again - so much 💙

It sounds by your post that the DWP wants the appeal through out but I would let it run its course if you have a good case, did you do a mandatory reconsideration of your original PIP award and failed so then took it to appeal??

Yes, this is following the MR… I will wait and see if I get an appeal date and continue from there. If it doesn’t work out, I shall reapply.

Thank you for reading my rant and taking the time to reply 😁💙

Hi Penelope - PIP is supposed to be about what you can or can't do and how well you fit the Daily Living and Mobility descriptors that get you the necessary points, and is not about the medical condition. I would be inclined to let your appeal run to the end and tell them that the diagnosis justs puts a name to the difficulties you have described and claimed PIP for. There is nothing stopping you also following the DWP's advice to start another PIP claim to run concurrently with the Appeal. Make sure you say in that claim that you are following the DWP's advice to start a new claim following the diagnosis. Let's hope that either the appeal or the new claim gets you a PIP award. You will find information about challenging the assessor's report in my previous post here healthunlocked.com/fibromya...

Thank you - great advice! I shall definitely have a read of your other post, too.


Hi Penelope.The PIP assessors are told “The DWP guidance states that the Healthcare Professional should explore all the PIP activity areas for daily living and mobility, focusing on the activities most likely to be affected by the claimant's condition. The HP should invite the claimant to talk through all the activities they carry out on most days, and explore how long it takes the claimant to carry out a task and whether they experience any symptoms such as pain or fatigue. As with the WCA, PIP assessors should also consider how a person’s condition fluctuates over time rather than taking a “snapshot” view of their condition on a particular day at a particular time” ( taken from minutes of debate on recognising fibromyalgia as a disability)

but I know from experience that they only look at you on the day. I had an assessment where the HP said I’m listening but I can’t type and look up at the same time. Apparently there was nothing wrong with me as I could sit on a chair ( in my MR consideration I asked where was I supposed to sit!) and I could walk down the corridor ( again I questioned why I wasn’t told that was being assessed) as Im in pain when walking every day.

When they ask how many good days a week you have tell them you don’t have good days you have bad days and better days.

There were lots of things in the report that were incorrect but I won my allowance back at tribunal, I’d had 8 points which is minimum for mobility and tribunal looked at it said let’s get you back to 8 as after the assessment I was down to six.

My last assessment ( pre-Covid) was done at my home, I didn’t ask for that the HP said the people allocating appointments look and see if you are able to travel. The whole system is flawed and there’s no consistency with assessments at all. I’m convinced they make things as difficult as possible to put us off,

There is also a website benefits and work that is worth subscribing to as they’ve got lots of info on how to complete your forms to make sure you put the right info on your form.

It’s also worth asking someone who knows you well and how your affected by Fibro who can help you answer questions and take some notes for you. If you have a phone assessment do the same if you can and tell them your recording it.

Please don’t be put off applying you have a serious condition that has changed your life and your entitled to help to get you through each day.

Good luck x

Thank you for your reply - I really appreciate you taking the time and I will follow your advice. I found out a little late about the benefits and work website, but I will definitely sign up to it if this doesn’t work out.. I’ll look into it before then, anyway!

Thank you again 💙

Keep at it , I’m similar situ . Don’t give up just keep fighting . Can fully understand where you’re coming from . Good luck & take care x

It’s just so frustrating, isn’t it!! Thank you - you too x

Mean b.....s! Have you tried your MP? They have a lot to lose or gain right now! My neighbour got her pension claim sorted in less than a week. Sorry this is causing you so much stress.

I haven’t, because he’s useless and very pro Boris 😅

But I’m not gonna quit! 🥰

I would suggest looking at Benefits and Works website. They have the full PIP test with the descriptors which is used and if you answer them it will give you the score. It is important to understand each descriptor and how that relates to you. PIP is awarded on how your condition affects you not on what your condition is. I was awarded PIP the first time after using all the advice on Benefit and works. You can subscribe to, it’s around £15/16 fir the year but it has all the advice you could possible need to help you understand how to answer in the right way. When answering the questions stick to their descriptors as you are then using their words which they then can’t misunderstand. Hope this is helpful.

Hi,I have now done an appeal as both times I have applied for PIP I have been turned down after doing 2 mandatory reconciderations. Up until January 2021 I was working 2 jobs a day,I was then put on the sick as I could not do my jobs,I was then told not to go back to work in December now am struggling to pay all my bills,it's making me depressed I now get very anxious I never leave the house on my own. I went to the CAB they have done everything for me and I am now awaiting a court case. Does anybody know how long you have to wait. PIP do whst they want try go either get a face to face assessment so they can actually see how it affects uou... good luck 👍

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