Hi all, I was just wondering whether anyone has had difficulties claiming pip for fibromyalgia and osteoarthritis. I have been refused and I am going through a mandatory reconsideration because I feel like I am being disregarded. Any help or advice would be much appreciated.
Pip difficulties : Hi all, I was just... - Fibromyalgia Acti...
Pip difficulties
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Please try again. Keep a detailed diary of absolutely everything that affects you from day to day. No detail is too small. Get a professional (CAB or a welfare charity, council etc) to help you. They know how to fill in the forms, using the descriptors that DWP look for (especially if you go to an appeal). Gather together any evidence you have. If anything changes, let them know and send in more evidence if required. Keep pestering them. It took 10 months for them to give me a decision on a PIP Review but I got a 10 year award. Just do it and don’t let them win. Good Luck. 🙂
Thankyou for your reply. It's nice to hear that you were successful. Don't worry, I will keep trying, I've also got someone who is going to support me with my mandatory reconsideration, she's a professional so hopefully we'll get the right result.
Don't give up keep going u are entitled like anyone else . And now we need the help why shouldn't we . I didn't feel I would ever be in the position myself and realy feel for u . I'm thinking of claiming for a blue badge find it so hard with the car but had to buy a aoutomatic so hope it will go in my favour has I have pain more onmy left side go on the fibro site there a questioner what they might ask u . I failed on it don't no why when I can't even shower. Good luck keep intouch
Thankyou
Hi, have you ever used the website Benefits and work? The advice has helped so many people with fibromyalgia (including me) receive the PIP that I’m entitled to. Good luck!
They were the help I needed to gain my PIP award and truly believe that I would not have it without them
I used it. You do have to pay a subscription but it is invaluable. Not only does it give examples of a daily diary but uses the ‘descriptor words’ that tick boxes when you apply, review etc. You also receive notifications from them if DWP decide to change any rules on claims (obviously without telling people). Eg The latest change has been to do with Mental Health which Benefits and Work were onto straight away via a Freedom of Information request. I’m sorry to ramble on about this but in another life I worked for DWP and couldn’t keep up with the changes then so how we lower mortals on the outside are expected to is just cruel. I realise I’m verging on the political with my rants (sorry Moderators) but I think it’s so important that people have some inkling about what DWP are doing. There are some lovely people working there who are ground down by the system.
Good Luck MrsSwing. xx
Thanks for that, just looked them up, ta ever so - shall be joining them when my PIP comes round again.
We do have our own Benefits Advisor at HU, Try them first.
Or no sorry to here that , keep going has it is an awful condition and they don't understand the pain and how have to live with it . I was thinking myself to go for it but still need to work even if I cN get a disabled badge . I just find it hard to get out of the car . Good luck x
Hi M. You get a Blue Badge from the Council. I got mine before I ever claimed PIP! Yes, when it came to renewing my Blue Bade it was easier to get because I was on PIP but you can still get it. If your mobility is so bad that you do need a BB, I would definitely claim PIP. The fact you’re working has no effect in it. PIP isn’t means tested. Put in a claim, keep a diary of everything you do, how long it took to do, how did you feel afterwards or the day after. Every detail counts. Then get help from an organisation such as CAB or a charity to help you to fill the forms in. Good Luck xx
Right I thought DWP gives u a badge . How would I go about it . I have to buy an automatic and cost me a fortune so I don't use my left leg and my hands has much . Not helping has yet so in mad about that . Will this help me if I went for pip ? Illxhave a look at CAB too. I can't even get over the bath with the pain I'll go a week so I don't have one. Has I'll be worse I can't even bend to wash . Not sure if I will get it . Has my job might go against me has I'm a support worker x
Is it much we get on PIP
It's enough to make a difference, there are two levels to each component - standard rate and higher rate for both personal care and mobility issues - I'm currently on standard care and high mobility the total of the two for me is £490 paid every four weeks. It's more if you qualify for higher rate care AND higher rate mobility.
Those are just my figures and PIP is not means tested.
If you go to your Local Council website there should be a form to fill in or contact details to request one or you can go through gov .uk/apply-blue-badge.
Hello Michelleswshopping PIP is money for anyone living with conditions where we need extra help because of it...
So, it doesn't matter if you work, as Blackwitch has said, this is not means tested, it is 'health' tested.
My mum worked all her life and was disabled at aged 40, she had PIP once she returned to work because her leg wasn't going to grow back, although it took them a while to agree it was going to be a permanent issue [go figure]. Having one less leg means she needed daily living aids to have any kind of day at all. So, don't feel guilty cos you work, this is the one benefit that is for us. Just us, cos it's a recognised thing, that if you need help with doing normal tasks, your life is gonna cost more than someone's who doesn't.
A lot of people spend their PIP on mobility aids to get in and out of their cars.... it sounds like you might be one of them... You've probably paid taxes all your life... see if you can get help so you can get in and out of the car that gets you to work.
I don't think they will look what taxes I've paid they should realy when I ve paid in to the state since I've left school. I think workcwill go against me has I'm a support worker . If I could just get a blue badge will make a difference . Trying to get a letter from doctors to push my hospital referral waiting since October pain is worse . And going up my spine and left side is so numb and hands painful and can't hardly write
Sorry, the 'taxes' comment was a flippant remark based on stereotypical perceptions of us.
xxx
Go get that blue badge, it will make a big difference xxx
Ha ha. I sort of new it was a joke it should work on that though . I will try thanks . How do u apply ? Do I need a letter recommendation doctors ?
Hiya, there is a lot of good advice, named suggestions and specific recommendations in the posts within this thread that I think apply to you.
I've been in the system a long time, things change in between each time I have to re-apply... I've also saved details from this thread today because things have changed so much, for one thing ...There IS definitely more help and resources for us claimants than ever before.
My understanding of the "how & where" with DLA, or PIP, Blue Badges and ESA is out of date, go with the recommendations here, I know I'm going to.
I'm very grateful this entire thread exists... Thank you to all 🕊️💓
Yeah I will take all this on board and all advice appreciated I'll give it a go . Thank u x
I got my Blue Badge before I claimed, in those days it was DLA, by going through my local Council. Once I got my Higher Rate Mobility the Blue Badge was an automatic entitlement. I still have it through Enhanced Rate PIP although it now costs me £20 every three years, I believe the charge varies from Council to Council.
It's my belief that in order to stand the best chance of getting PIP you should seek advice from the likes of CAB or, in my case, my local MP who has staff who deal with benefit claims. I also found the Benefits and Work website invaluable as it helped me to put together the information I needed to give to the MPs staff who helped with putting the form together. They sent the DWP a form stating that they would be dealing with them on my behalf. They also dealt with the MR I needed and pushed for a second MR as the DWP hadn't waited for additional information to arrive before making their decision. I was fortunate to get my PIP at Enhanced Rate after that second MR.
It's always a problem with DWP, fibromyalgia is a problem for pretty much all suffering with it, get a letter from the doctors detailing how your condition affects you, also proof of diagnosis, there "specialists" don't know a lot so when you go and see the court ask for the decision to be made for life so you don't need to keep going through the same bs every 3 years or so.
It took me 3 times and a full year of appeals to actually get my PIP award and it was the lower rate. I must say I was delighted to get that as at least I felt I was listened to eventually regarding my condition.
I also must add that after being diagnosed with Fybro and the last year my condition has really worsened that I would like to claim a higher rate now but I do fear losing what took me so long to get.
Just keep at it. Carry on sending in any changes in your circumstances together with GP or Consultant letters. Keep a daily diary in an easy to read format so you can pick a really bad few days, (what and how you did things, what effect it had on you at the time and on the following days), copy everything you send and keep a file just for PIP. Remember- they don’t like the word ‘sometimes’. They want to know that you can’t do certain activities ’safely’, things that cause pain (type of pain, severity etc). Have you had to use painkillers, increase or change your medication, the side effects, how this makes you feel (loss of confidence, anxiety). Do you get help from anyone? Does your fibro cause brain fog, loss of concentration, light sensitivity, do loud noises affect you, do you have a heightened sense of smell and does this cause you to feel nauseous?There are so many things that fibro sufferers just take for granted but it affects your life every day and you don’t even think about it because it’s normal for you.
I have multiple disabilities and health problems but fibro and ME are the most difficult to describe. Get your GP onside. I just kept pestering PIP and bombarded them with information but I got a 10 year award on Monday with a care upgrade too without asking. Good Luck. Nic xx
Thanks so much for your response!I barely leave the house now and confidence is at an all time low.
I have bowel and bladder issues to and because of my inability to move quickly often results in me soiling or wetting myself.
The brain fog is also real and find it hard to concentrate, I also forget constantly if I have taken my meds or not which isn’t great.
I do have help every day from family and without this don’t know if I would actually still be here if I’m honest.
The past few years although extremely challenging has also been a blessing in the fact family were working from home so I had help more often and daily.
I cannot dress or bathe myself and also cannot cook or even make tea as my hands/arms and legs are so painful.
The pain relief helps very little but I suppose without these I wouldn’t be able to function at all.
I will maybe contact the advice centre that helped me with my initial claim to see what they advice and take it from there.
I think a lot of people tend not to go into detail about incontinence purely due to embarrassment. After slipping discs in April 2020, I started with incontinence. Luckily, it wasn’t a permanent uncontrollable type or cauda equina which can be irreversible. Mine is affected by pain. The more pain I’m in with my back, the more urinary incontinent I become. Don’t be afraid to say that you’re affected by incontinence. It can give you extra points. I always plan journeys away from home around where toilets are. I have a Radar Key (I got mine online for about £5) which opens locked toilets, especially for people with disabilities, which are usually on ground floors of shopping centres, inside petrol stations or motorway services. The Motability website explains about the keys and there is a map (but I think there’s a small charge) of where these toilets are. Again, if you have faecal incontinence and need some help with cleaning up, don’t be afraid to include it. Everything counts if it affects your day to day activities and puts you at a disadvantage compared to non-disabled people. Following a hospital visit a couple of years ago, I had gastroenteritis. I got to the stage where I was so exhausted, I couldn’t get to the toilet in time, couldn’t clean myself or the toilet and it lasted a week so I know how exhausting it is. I hope nobody is too squeamish on here but there are too many barriers and unless you tell it in all it’s glory, it could be the difference between a successful and unsuccessful claim. Nic xx
Re-Apply, most definitely, re-apply xxxxxx And having checked out the benefits and work website - fill in the mouse-clicking quiz for PIP eligability - and you'll see you might want to re-apply - there's more help out there since the ATOS PIPs fiasco of the past decade... things are improving.
Go for it all the way !Mine and lots of other “non-visible and fluctuating conditions” have appeal many times - you’re not alone!!
I totally agree. Lots of people use ‘the spoons’ method when keeping a diary. I think it took all my 6 spoons every day for 3 days just writing my PIP review and that was with my husband doing all the collating of Consultant letters and photocopying them. It is really hard, isn’t it? It really is worth it in the end though. Nic xx
Please share what the spoons method is.. would be great to know how to start!
There are different methods but this gives you an idea of how to explain fibromyalgia or CFS/ME to family and friends.
Spoons Method
Spoon theory, spoon theory, spoon theory
the origin of spoon theory in video and written formats: is usually found at
butyoudontlooksick.com/cate...
but I tried to access it just now and it has disappeared - but putting this in in case it comes back!
Short versions...
youtube.com/watch?v=GDio-hS...
youTube 4 mins 30 secs...
and a mental health site 70 seconds ... roguedebby.co.uk/spoon-theory/
Take your pick or read/watch all three - spoon theory changed my life, understanding spoon theory means we can plan.
I have to say the youTube 4.30mins one isn't really upbeat - and it should be, cos I was bedridden for several years and now I can do things!
PS... I copied the bits above from a previous reply I made to someone else, a month or so ago - and today the main link was unavailable - but tbh most people find the butyoudon'tlooksick.com website to have too much info to wade through - but it is the original site for spoonies, so I kept in. [brain fog day]
Thank you sooo much I’ll check out that site. I just keep hearing about it and never know how to know how many spoons to start with each day.
Your body will soon let you know when spoons are low, in the meantime - it's a good idea to think back on which activites you know drain you more than others.
If, for example, having a shower and styling your hair drain you before you get out of the door - maybe have a hat ready for a 'bad hair day' so that you can get out of the door without feeling really rubbish about yourself!
We have to offset things and plan in advance when there is something we really need to do or want to go to.
Don't forget emotions and mental distress use up a lot of spoons too... a reason why PIP forms are too much for most of us. Things like that need time and help from at least one significant trusted person.
Don't be defeated, once you recognise things that drain you more than others, you WILL be able to plan things, life will get smoother and friends will understand - the ones who don't understand are not worth your time and energy and sap the life out of us - don't waste spoons on people with fixed ideas and no understanding or empathy - these people are easy to spot and their input is worthless.
Sounds like spreadsheet time. 🥰 This was very helpful, thank you very much! Particularly for the reminder that I should find other activities related to me and categorise them.
Cataloging our difficult areas of life can be depressing, so don't focus too much on what you find difficult... just bullet list if you need to make a list at all.
Also, I suggest investing in nice smelly stuff - the entire process of showering, drying, dressing and styling is often way too much for me - Although 'festival' or 'camping' style cloths are a fantastic way of saving spoons - the cloths give you a water free equivalent of a bath using a drop of water and you are clean and dry instantly.
Can't remember specific brands, but there are always some on ebay if you can't find them in a camping shop... I think the ones I use are by 'summit' they come in a pack of five in green packaging [brain fog is not helping me remember a more accurate description]
Sorry - 10 spoons. 🙄
Hello, As you and others must well know PIP is not awarded on a diagnosis or disability or an illnesses you may have. PIP is awarded against your inabilities to cope and mange the PIP descriptors and activities safely and repeatedly and in a timely manner. Anybody applying for PIP should firstly gist the benefits and works site and take a self test of PIP and see how they score. In taking a self test be brutally honest about your abilities as should you decide to apply for PIP the answers submitted in your application form will have to be justified at your assessment. And remember the health conditions you are describing for PIP have had to present for 3 months and likely to remain for a further 9 months or longer.
It's good to hear everybody's experiences and advice, it's going to be a hard slog but I'm going to take on board what everyone has said. I'm pretty glad that I came across this website, I'm so used to keeping everything to myself, it took a lot for me to ask advice from others because I've always been so used to trying to sort things out myself along with the help of family, but it's just so difficult now. Thankyou so much for all your comments it's much appreciated.
Try again. Download Personal Independence Payment (PIP) assessment guide for assessment providers. This will tell you what the assessors are looking for.
You don't claim for the conditions, you claim for the way the conditions affect you, but yes, I have fibro and arthritis (along with a few other, lesser, conditions) and was initially refused. My MR was refused too. I was eventually granted PIP just before my appeal after they, "took another look and realised I did qualify after all". It's a daunting prospect and I was totally dreading the actual appeal itself (I have ASD so putting myself in that situation was terrifying), but I was determined not to give up. I didn't have any outside help (another ASD thing) but I was just totally honest, explained everything that the report had wrong, including the fact they'd stated I could do certain things (which I could, when asked at the assessment, such as "can you stand up from the sofa please", so I stood up, albeit a little slowly and stiffly) but that they hadn't taken into account the fact that I couldn't do these things repeatedly and in a timely manner (yes, I could walk out to the bin, but I couldn't do it several times in a row, and it took a long time). If you're able to, find someone to help with your appeal: CAB, Fightback etc. I think the DWP rely on people giving up. They hope that by making it difficult, less people will go the whole way to appeal. Don't let them get away with it!
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