Hi everyone. I've been on pip for two years now and recently had my review questionnaire on which I'd indicated that I'm now much worse than I was 2 years ago with hip bursitis making walking difficult and I've since been diagnosed with both severe lupus photosensitivity causing joint pain in uv light and as a separate diagnosis solar urticaria but not just to uv but to ALL visible light. My original assessment had me at 11 points and my reassessment dropped me down to 8 points and kept my mobility the same ... Mainly as he asked me how long I could walk for INSIDE until the point that I literally couldn't move any further and then reported that as me saying I could walk for a few minutes before needing a brief rest. I've pointed out that I didn't say that at all, it was 2 minutes until I literally couldn't walk at all, that I couldn't do it again, that it would be slowly and that I couldn't do it outside. Also how long I can walk inside with uv filters is pretty much irrelevant when I can't spend time outside so have to go everywhere by car to minimise the light exposure anyway!
Anyway I won't go into the full assessment other than to say that the guy lied in his report repeatedly - my letter for mandatory reconsideration ran 22 pages ripping apart the guys report. It won't surprise anyone to see that this was rejected .., apparently I had a different recollection to the assessor but there is no evidence to that effect and I "looked well" (grrrrrrrrrrrrr). So him saying I wear reading glasses when I don't isn't evidence enough??? Ludicrous.
So I'm guessing I'm going to have to take it to tribunal to see what they say. My pip hasn't been stopped but I think the level is wrong and even if it stays the same I feel I should be properly assessed with the correct points allocated. I'm relatively confident in my ability to explain my conditions and how they affect me to people so not put off by dealing with a tribunal but at the same time I want to give myself the best shot of getting it right. I've already asked my rheumy to provide me with backup information regarding the appeal but she won't do it and has said I can send my clinical letters and that should be sufficient ... Her secretary also passed on the comment that my benefit hadn't been removed though which annoyed me beyond belief as it makes me wonder if she'd help if it had making her willingness to help feel like a judgement thing.
Anyway before I lose you all on an essay is there any advice from people who have been through this, successfully or otherwise, and what should I do next? I saw on another thread that Lupus UK can also provide information to back up an appeal but no idea how to go about getting this? I've also seen people mention a welfare officer who will help but I don't know how to access this either.
Any help will be HUGELY appreciated. my first assessment 2 years ago was very supportive, understanding and knowledgeable but the way that I was treated on this one was disgraceful. Luckily I'm confident enough to stand up and fight (with the help of my crutches on the standing bit though lol) and I'm used to dealing with government departments for work but I have no idea how anyone with less confidence and less able to cope with this stress copes I really don't.
Oh and I intend to take the situation to my MP with regard to the total pack of lies that the guy told in his report as this sort of thing shouldn't be allowed. If I lied like that I'd be charged with benefit fraud so for it to be done the other way MUST be stopped.
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Mifford
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Sorry your having to appeal your pip reassessment. It's awful what they're putting you through!. My advice is have the help of an organisation like DIAL if you have one in your area or Citizens Advice. They will help you at the Tribunal, may even go with you. It is ridiculous you scored less points when your health is obviously worse!.
Hip bursitis I've had several times and isn't it painful and restrictive?. You can have a steroid injection into it by your GP or a local anaesthetic one . I've had help from both. Best of luck and keep us posted. X
Thanks for the help. My rheumy decided the hip pain was bursitis at my last appointment and did steroid injections into both hips. The relief to begin with was amazing - I finally managed to get more than a few hours sleep without waking up in pain as I sleep on my side as my back locks otherwise. Unfortunately it only lasted 3 or 4 weeks and since then it feels worse than it ever was although it might be having had some relief it just feels worse rather than any deterioration. The physio told me that there's nothing they can really do to help as it won't respond to normal treatment as it's the lupus causing it not an injury etc. It's ridiculously restrictive though - the assessment says i can get in and out of a normal bath without help. I'd love to see him try it if he had my hips! Lifting and rotating them is like getting debilitating cramp and it's just impossible. Walking distances without my crutches just becomes too painful - it's laughable that the guy saw me walk 5 meters total over 3 trips and says I can walk up 50 metres level when the bursitis gets worse the more I move. He really didn't have a clue
I'm sure the pain feels worse because you had that wonderful break. The injections can be repeated. I've had bursitis in both hips. It took two injections to cure it properly spaced and at the moment my GP is giving me local anaesthetic one more often for my other hip. I've had six months relief on second injection. It is such a strong unrelenting pain, the pip assessor couldn't have been more wrong if he'd tried!. It's awful what your having to go through!. X
You're not the only person to report PIP assessor untruths Mifford - these seem to be getting very common.
I have a friend who is in hospital at least half the year with various ailments, bilateral amputee, missed the first pip reassessment as was in hospital seriously ill, on appeal had a second booked, she waited by door and window, nobody showed, they said they did show and she wasn't in.
So they are saying for her her to wave bye bye to everything pip related including mobility car - we're dropping round a week's shop to her later today, but some kind of legal assistance would help her better long term.
It makes my blood boil, it's just so unjust. Best of luck to you, make best use of local support networks and your MP, if you can afford it get a solicitor on the case then do, even the fact you have a solicitor writing them letters will make them squirm off looking for easier prey.
The number of inconsistencies and things he's reported that we didn't even discuss made be seriously question whether the report was definitely me! The comment when he wrote that I wear reading glasses just left me totally bemused because I don't and never have! But more seriously he claimed complete Dorsi flexion in my right wrist when he never tested it and when it's not possible for me to have complete movement - he must have missed that the restriction to 10 degrees measured 2 years ago wasn't because of a lupus attack but followed a car crash that caused tendon damage and my wrist has been like that for over 20 years and can't possibly be normal. And all that the DWP write back is that there's no evidence it was untrue. Truly mind blowing.
It's good that u not giving up or just letting them win. I don't think these pip evaluations are right as they don't see wat ur day is like. I would have a person with u first time when he talks to u n the same person when u saw him next so they can also say he lying. The constants won't write letters the only way u get round it is to say if they contact the consultant to get ur history u are giving them permission to get that private info. U may need to write a letter saying that.
The application includes permission to contact any of the doctors or consultants from memory jacclaire. Two years ago they contacted them for confirmation of my diagnosis but they've not been in touch with any of them this time and yet claim they've accessed all available medical information. I've sent them copies of all the hospital letters since then though so maybe they felt it wasn't needed
Yes, definitely fight this - basing how you mobilise indoors is NOT how the mobility assessment is supposed to work. It is about being outside, on a flat surface, safely, repeatedly and reliably, but I assume you're challenging on the care component? What usually happens in that regard is the assessment companies always insist that more evidence was provided after the fact and that is why they made the decisions they did - however it's supposed to be part of the whole process that they contact your specialists directly before they make their assessments in the first place, so it would be worth finding out if this was even done, or if they relied solely on the assessment (in many cases, that's what they do). It would also be good to know what specialism your assessor had - they're scraping the barrel these days as Doctors don't want to be associated with these companies anymore, so the likes of Maximus et al are now using nurses, physiotherapists, and others who may have absolutely no idea what lupus is or how it affects you. If you can, get a hold of the PIP guidances (you can sometimes do a backtrack of google for them, the government is supposed to make these accessible to all but there's been scuttlebutt that the links on the gov. uk site have been disappearing) so you can find what the official criteria is, and then compare this to what was actually written - as you've said, the mobility criteria was completely wrong, there's a good chance your assessor played, shall we say, highly interpretive with other criteria.
I wish you courage and energy to fight, it's a long slog. I'm still not sure if I want to go through with it next year - but I've found if I make it really clear from the start I have every intention of appealing the decision if I feel it's wrong, I tend to get what I need. The last time I challenged the DWP over my DLA, I didn't even have to attend the appeal - it was grated by the tribunal after ten minutes of them reviewing the notes and the clerk called to let me know the case had gone in my favour.
Thanks silvergilt. I know they haven't been in touch with my rheumy and I'm willing to put money on it they didn't contact Guys about the photosensitivity as they commented that they don't take "weather" into account and clearly have no concept that this isn't about weather but about light. In my case it's ALL light so unless they want to assess how well i can walk in the dark it has to be relevant. They do put the assessor's qualification on the front and this one was noted as paramedic. Last time I had an OT and she was fantastic - by talking to me about how it affected me and asking for examples rather than just going through a tick box exercise she did a much better job on their behalf too as she got a much clearer picture. She picked up on things even I didn't realise I did. I guess I just got lucky that time which was a relief as I'm a lot more savvy about how it works now than I was then and would have given up.
I'm challenging on both care and mobility. Last time they took into account that I need large handled cutlery and needs liquidiser when I have really bad mouth ulcers in the eating component and scored me as needing an aid to take nutrition. This time I had a home assessment (not my request) and showed him the liquidiser on the side and asked if he wanted to see the cutlery which he said wasn't necessary and he's not mentioned either and said theres no mental incapacity to stop me eating. I'm also challenging the points on food preparation - i quite simply cannot chop vegetables and fresh food for a meal as my grip and wrist strength are too poor to handle a knife safely, I struggle with lifting pans of water without risking burning myself and I'm too tired by the end of most days. When my fiancé is away he prepares me meals in advance and freezes them for reheating as otherwise I'll just have cereal for dinner - they are classing me as just needing equipment. I can't even hold a cold carrot or potato for cying out loud let alone peel and chop one! And the other big bone of contention is the ability to get in and out of a normal bath - he says he thinks I can despite me reporting to him that I'd previously had a shower board supplied by adult social care to enable me to shower as I couldn't get in and out the bath and that I have now had to have the bath removed and a walk in shower fitted with various adaptations as I couldn't manage the shower board in the end either. He's not mentioned any of that and just made a blanket statement with nothing to back it up other than thatnincan drive a manual car.
On mobility he's either totally misunderstood my answer (his English was poor - I've avoided saying this to them as don't want to sound racist and I genuinely have no problem with whoever they employ it's just a fact) or he's fabricated it. He's not made any comment in his report about the question being about indoors and the way he's reported it is completely wrong. Plus my crutches were by the front door and he had to walk past them and nearly tripped over them. I showed him the 3 metres to my kitchen without using them as I was trying to be honest and then had to come back to get my ID. On the way back to the kitchen I grabbed one of them (they have ergonomic handles) as my left hip was getting painful and used it from then on in. He's reported that I walked around during the assessment (!) and that later I told him I use crutches then went to get one to show him!! The report on mobility doesn't take any account at all of the photosensitivity element and it's not mentioned at any time - it's a BIG part of my appeal as I can't spend significant time outside without really suffering. My joint pain flares badly from uv but I'll also suffer from migraines, allergic reactions and severe fatigue from any lighting including inside. And the reconsideration says I didn't use my crutches for the physical test .. I moved 2 steps to a different seat and sat through it and the brief time I had to stand I had to ask him to move so I could use both the worktop on one side and the dresser on the other to support myself and that hasn't been mentioned.
I just hope the tribunal understand the photosensitivity element as there isn't much online and it's really unusual the degree to which I react and is really limiting. In theory I might be able to walk the distance but I simply can't go out!
Sorry about the long reply - I'm feeling a bit ranty at the moment. my mandatory reconsideration letter was 9 pages on the initial reply and 22 on the second one once I received the actual report copy - with any luck the tribunal will take one look and decide it's too much of a headache lol
Many thanks for the relies so far - I have an appointment with the CAB for next Monday morning to go over submitting an appeal. I'm happy to do it myself but I think it's a good idea to go over it with them so I don't end up getting so caught up emotionally and to remove the stress of dealing with it. I have a huge file compiled for them including copies of all my original assessment information so hope they've set plenty of time aside lol. I'll update as soon as I have anything further to report
Hi there,
I am sorry to hear that you are having problems with your recent PIP review.
Your local Citizen Advice Bureau can help you challenge and appeal against any decision or assessment you feel are not a fair reflection of your situation.
We have guides for claiming and appealing benefits which are available for members of LUPUS UK. You can find out more at: lupusuk.org.uk/benefits/
We can also provide a letter of support for claims and appeals which you can request by sending your full name and address to christine@lupusuk.org.uk
Fantastic thank you - the letter of support in particular might be quite helpful so will go ahead and email on that and have now requested the links to the guides. I am determined to push this as far as I can as I'm so annoyed by the dismissiveness of the report - the mandatory reconsideration repeated that I "look well" which is just infuriating with lupus and shows a total disregard for the complexities of hidden illnesses that shouldn't be accepted.
Hi - in theory it is as I don't have major organ involvement at this stage but my joint/tendon pain has been pretty much present all the time but might vary which joints it attacks and has got steadily worse - if it's not my hips stopping me walking it's my ankles or my back etc. A lot of the problems with my wrists aren't totally lupus related as the lack of dexterity follows operations on my right wrist so that's constant but the lupus attacks my hands regularly so that fluctuates. And the photosensitive element of the lupus has been constant too - the seperate severe photosensitivity that has now been confirmed is getting worse as there is stronger artificial lighting everywhere but is always present too. At the moment we haven't found any treatment that works so although I have good days these aren't that frequent but the fatigue and pain does vary - as an example this morning I woke up and couldn't move my right arm without severe pain and slept badly because of it so went back to bed for 3 hours due to severe fatigue and spent the day on the sofa resting but tomorrow I'll still have pain and fatigue but should be able to get up and move more.
I'm aware of the need to assess on the situation for 50% of the days in the year rule if that's what you're looking at? I always forget to mentally log how many days I'm good or bad as its amazing what you get used to - might keep a diary for a few weeks before sending in the appeal though to help.
That's partly what I was going to say.... your descriptor scoring decisions under dwp rules apparently have to look at fluctuation and also being able to do 'reliably, reasonable time and safely'.
Have you just got your award? Are you requesting reconsideration as time limit is around 28 days.
I'm having the above problem and got to decide about reconsider request. Struggling just thinking about, terribly stressful.
I got my first award 2 years ago and this is my review. They haven't removed my lower level on both elements but by my reckoning I should be on higher on both. Mandatory reconsideration has been done and rejected - from what I've read that's standard but it's a process that has to be done - and now I'm planning to put in my appeal as I figure I've got nothing to lose. I have an appointment with the CAB next week who were very helpful on the phone so with any luck they'll support me through the process.
Oh and my optician has agreed to write a note for me to confirm that I don't wear or need reading glasses - he found it highly amusing that I should need to prove that I don't rather than my word on this being accepted but it's an easy way to provide evidence that my assessment is not accurate which will hopefully help sway a tribunals sympathies my way and show I'm being honest
I am having same problem but with esa not pip , had my esa stopped ( I was in the support group) , got zero points and told I am fit for work , I have lupus nephritis level 3 with irreparable kidney damage , on immunosuppressant drugs and steroids, have osteoporosis, on warfarin after 2 large blood clots , deaf in right ear after brain tumour surgery. My report was full of lies the main one were they have said I heard a conversational voice in BOTH ears and wasn't wearing a hearing aid . I had my eardrum removed altogether and so nowhere to put a hearing aid . I am not surprised by any of the stories I don't know why the dwp don't just get all the disabled and chronically sick people together in a row and shoot them all , they would meet their money saving targets then . They are told to lie in reports it's a disgrace , the descriptors are made so that noone can get points . They make it so difficult because they think they will catch out all the people who are conning the system but that's not happening, I have heard of people with sod all wrong with them who have gone to assessment put on fake tears , lied through their teeth and got the benefit without having to appeal. A friend of mine knows someone who has a friend who did this to get pip , claimed she couldn't do anything for herself, got her husband to say he does everything for her and she got it . After bragging about getting the money again she then showed off her latest holiday photos showing herself riding a bike in Greece or wherever it was . The system is a joke they are taking benefits off the genuinely sick people and if our doctor's say we are unfit to work who are they to say we can they know nothing about our conditions . I have also just been told about a lady who has scleroderma which is a horrible disease, I was in a hospital bed next to a lady with that a few years ago it's terrible and you are not expected to live long with it . My friends neighbour has it and was on disability living allowance, she has just had it taken off her altogether, didn't win her appeal and now has to give her motability car back , I can't believe it it just seems that no matter how sick you are it makes no difference at all . I think they want us all to commit suicide from the stress of all this ( 45 people already have ) that will save them money . They waste money by doing things like changing DLA to PIP, that must be costing millions to implement, that money could be used for the NHS . It's a disgrace that this government are making long term sick and disabled people suffer to save money when they waste money all the time . Sorry to go on so much but like many of us I just feel disgusted by it all .
As an update, I went to the CAB last week with copies of everything from my first PIP claim form onwards. It took longer just to tell the lady the background than the ATOS assessor took doing my entire assessment! In fact they decided that my overlaps of illnesses and the number of areas where the report was incorrect were so extensive that they booked out time for their PIP person to look it all over on Monday to formulate the appeal and then the nurse was meant to review it from a medical point of view yesterday but I didn't hear back. I'm hoping they have everything in place when I call back today as its now only 7 days left to get the appeal in and I've not signed the form or seen what they have come up with yet so I'm starting to get a bit jittery. I have no idea whether an appeal is likely to be successful but I'm hoping I'll at least feel as though my award has been calculated based on accurate information and a proper assessment of my situation if I appeal but who knows. Will update further as and when
Update - I picked up the notes from the CAB today and the appeal has now been sent in. They condensed everything done into really concise notes that simply stated the facts without explaining them .. things like where he has said I can chop vegetables they've simply stated this is incorrect as I can't due to my wrists and that's it. Funnily enough they've told me I should be claiming in relation to one of the descriptors that I hadn't claimed on as well due to the glasses I have to wear for photosensitivity and added in one or two points on some of the other descriptors that I had t even thought to add as it's things I accept as normal now without thinking. On the mobility side where I went into great length about the times I could walk, what caused the pain etc etc they've condensed this to one paragraph and simply stated that I am unable to walk 20metres repeatedly as it is unsafe for me to do so due to my unusually severe photosensitivity and the impact this has. And that's it. No argument, no explanation, nothing - and yet it's far more powerful than anything I put before in a strange way. They've simply stated that it isn't safe as a fact for the tribunal to look at as opposed to me being persuasive and looking like I'm trying to convince them it's true if that makes sense.
I'll let everyone know how it goes once the tribunal happens - I'm sticking into my head that I'll lose at this as I don't want to give myself hope now. But I'm keeping everything crossed.
Not sure whether to start this as a new thread but updating here for anyone that might be following. The tribunal is now in process and I have sent a further letter of medical evidence from the photosensitivity department this week stressing that it is dangerous for me to spend time outside walking and supporting the rest of my claim.
Today I received the DWP tribunal response and am literally just gobsmacked. Apparently I can chop vegetables, don't need aids for eating such as the thick cutlery I use (my choice but not necessary apparently) and no problem with a bath as long as I use a board or seat all based on the fact I can drive a manual car. They've have stated if I was unable to do what I claim then I'd be unsafe to drive and a danger on the roads. Every section that I have appealed their justification is "she drives a manual car".
With the walking they state I walk slowly but the mobility element is merely about my ability to move and my reaction to the sun outside is not relevant as the question of mobility is inside and out. Ummmm not according to the criteria it's not it's purely outside! Plus they've totally failed to grasp the fact that if I'm spending the time it takes to repeatedly walk beyond 20 metres outside my pain levels and joint problems increase due to the photosensitivity. The element where it needs to be "safely" relates to falls only according to the DWP .. so the fact that it makes my lupus flare puts me at risk or that I could ultimately suffer anaphylaxis from the solar urticaria is fine then 🙈
Oh and I can walk outside because ... wait for it ... I can drive a manual car! No seriously.
They haven't even got my medical history correct as the osteoarthritis in my spine they state is due to a car crash and that there is no specialist treatment or therapy related to this. My problems with my right wrist were caused by a car crash not my back and nobody has ever asked me about the back treatment - I was under the orthopaedic department for my knees as I'd had some bad falls when they gave way in me years ago. I had extensive physio which concluded the problem was my back and this was how the osteoarthritis was diagnosed following scans etc. After more physio I was eventually given a facet joint injection which made me worse and I gained loads of weight. Then they gave me another one. Which made me worse and I gained more weight. The hospital referred me for a third full epidural with a massive steroid injection of about 3 times the previous level and I rejected the treatment as I was terrified that based on the previous two they were at risk of crippling me! When I saw the consultant and told him my decision he had to tell me that I would be signed off their service but as I left he told me off the record that he thought it was the right decision - I was only in my mid 20s and we didn't know about the lupus then and the treatment was taking away any quality of life I had. Since then it's been intermittent physio with me managing the pain as needed with random diazepam and by using a tens machine - and it's amazing what you get used to right? I didn't realise that me coping with a condition that can't really be treated would go against me.
Anyway - I'm not sure if the DWP response is supposed to make me nervous or put me off or bully me in some way but it's had the opposite effect. There is no way on this planet that I won't fight this every step of the way now. To be claiming I someone can drive they can do everything else is just absolutely ludicrous and just proves to me they haven't actually looked at my situation or assessed me properly and that leaves me furious - all I'm actually asking is for someone to carry out a genuine and honest assessment in the same way that I've been totally up front and honest with them. Game on.
My appeal date came through today - 15 February so at least I don't have too long to worry about it. Not until 3pm though in a centre that is over an hours drive away. On the phone they told me it should only take half an hour at the hearing which I was a bit sceptical about as I can't see how they can cover the complexities of my various problems in such a short time frame unless they've already made their mind up! While looking through the evidence again this afternoon I also noticed that my mandatory reconsideration letter had totally the wrong award dates on it so I might well bring that up to show just how much care they took over it!
Nothing to lose I guess - I'll update on how it goes.
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