I'm feeling quite upset currently and stressed out..was officially diagnosed with fibro by rhumy April 2013. I have had issues with health since 2008 when a disc went in my lower back, caused issues with right leg which was numb to my toe..I had decompression surgery, and a nerve root injection in my leg but still feel pain in it, an ATOS doctor once said that the reflexes are gone in my foot and leg..
Later in 2009 I had another disc go in my neck and I was going to be given surgery but on the day of the decompression/replacement surgery the hospital sent me home due to an error on their part..I was sent for emergency steroid instead while the op was relisted the next month, I changed my mind and bottled the surgery, just after this I had a baby...the unplanned pregnancy was ok but just after the birth I couldn't walk, my back was horrendous, worse than ever, it kept locking, I kept asking for help was put back on morphine patches, I tried for DLA was refused, and was still kept in the WRAG which I've been in since 2008....I've kept going, managing by sleeping, and looking for support wherever possible..I've had my MEDS increased bit by bit when last year the rhumy doubled the patches to 140mcg transtec bupronorphine..
I got a brilliant support worker and I applied for pip and my ATOS interrogation is this Thursday, I've just got some note from my gp which were sent to him from the back clinic, it says all sorts of rubbish, like one doctor at the hospital questioned wether my limping in 2013 was intentional, that I was basically just depressed and that I should be given counselling, and that I was aggressive, he also stated that he thought I could have polymyalgia (I was 32 at the time)...a letter from the rhumy states how I feel so much better and that I've been gardening! (I told her I've been sitting in the garden due to low vit d levels like she told me)
Has anyone else had similar put in records, has it harmed your case, I'm very worried that they will now think I'm lying and refuse me again...im not very strong and im sick of this illness being trivialised...xxxxxx
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I'm very surprised at Dr's writing such personalized comments, though they often misconstrue elements of conversation. Example, "offer of ......a certain medicine... currently declined". What was actually agreed between Dr and myself was to wait for further bold test results before considering. So annoying.
For your PIP assessment just be clear and precise about what you suffer, it's effects on you, what you can and can't do, when asked. Remember what may be normal to you (as you've suffered for sometime and likely adjusted your life to help cope) is not normal in an everyday life.
If I were you I would try for an appointment with CAB they give excellent advice, also I would question the allegation of aggression as this is a defamation of your character and should be addressed at the highest level. You say you have a good support worker get him/her fully involved I think you have been treated appallingly going on what I've read here and I wish you well in your claim. Lou xx
Cab isn't really an option, it would mean going there by myself during the day which I can't do, my pip is on Thursday so I won't have time anyway..I Was going to send some evidence to the DWP pip decision maker but I'm not sure if her writing that I was gardening and felt better could harm me, however it was over a year ago this was written, would they take notice that I can have 1 ok day then 6 bad days?
I was upset about what the doctor wrote, but I did write it on my pip form that pain is making me aggressive so I might leave it as it is..however I know I wasn't aggressive on this day, I was in agony when he moved my legs..
Support worker can't help with appeals if this goes wrong, she's referring me to family mosaic though..
Any thoughts gratefully received, many thanks to you all xx
Try looking on the benefits and work website there may be information on there that might Help you, just be honest and tell them how your worst days affect you. Good luck hope all goes well let us know how you get on.
I am so sorry to read all of this, but I think it is probably too close to the PIP assessment to change of this now? What I would do is concentrate on the assessment by being ready to explain how your disabilities affect your life and your day to day living and how you function. I would also probably have somebody else with you during the assessment? Preferably somebody that knows you well and how your disabilities affect you?
I want to wish you all the best of luck with your assessment, fingers crossed for you.
Thank you for the replies, it's nice to know there's people who care..
Things are quite bad tbh, my days consist of sleeping and not much else, I am a lone parent and the youngest aged 3 has to watch her iPad next to me while I sleep, i have difficulty sleeping like most of us fibros.
I'm not one to ask for help, I was in care as a child and am used to not asking for help..I was referred to the pain clinic but didn't go as I felt it was counter-productive travelling all that way, to miss sleep and to be in pain so I could get help for the pain, so I've basically slept as much as I can..
I'm worried that not going will go against me, and I'm worried about my meds, im currently on 140mcg burprenorphine transtec patches, I'm worried they'll use the high strength against me and ask how can I still be in pain..
My sister is taking me thankfully as I can't drive anymore...I don't know how I'm going to do this, I haven't got the energy for an appeal...I Feel quite angry, I'm sick of having to fight so hard, it's not just this its esa, & bedroomtax as well..
have someone with you as They often remember something you may forget. I see you said sister is taking you so that's good.
They will ask how you got there etc
yes I've had some drs write silly things even operation to take bits out and they've said are still there and ok now unless u can grow a body part lolol u have to laugh.
Thank you, luckily I've been dealing with ATOS since 2009 as have been in the WRAG, so I'm aware of the deceit and lies, it's so wrong how anything is used against us...
The doctor said I was intentionally limping, yet the year before I'd had a nerve root injection for a damaged nerve in my leg, and have no reflexes in right leg..grrrrrr there should be comeback for them but there isn't...
Do not get yourself worried about this. I had similar problems when three of my GPs completely ignored one of my serious symptoms and failed to make a record of them over a six month period, which I didn't know about until a wellbeing coordinator queried it and it came to light. A nurse complained on my behalf and relevant referrals and treatment were given, but I panicked as my records were incomplete and did not reflect the full picture of my condition. So I rang ATOS and the gentleman I spoke to reassured me that the main body of evidence is taken from their assessment on the day. At the assessment you will have chance to explain this and I found that my symptoms and description of the every day struggles I go through were more than enough to prove to the assessor I was entitled to the enhanced rate in both components. My assessor, an RGN, was only too aware of the problems regarding incomplete or subjective records and was much more interested in how I am NOW, as I appeared in front of her. She made a note of anyone else involved in my care or treatment such as the OT, physio and nurses, and I asked her to please write to any of these to corroborate my evidence, but she didn't need to do this.
Just be very clear about describing ALL your symptoms and struggles in every part of your daily life when your condition is at its worst.
Its completely normal to be anxious at this stage but it will soon be over, so don't stress over things you cannot change at this point. In the long term, if you consider any part of your notes to be inaccurate then you can apply to open your notes and I suggest you seek advice on how to have anything you find inaccurate amended. From what I gather this can be a lengthy process, but absolutely worth it in my opinion, as it is unacceptable to have false medical records. Doctors have a strict code of conduct and are only allowed to record FACT not emotive or judgemental opinion. Good luck for your assessment, I hope you receive what you are entitled to, and should you disagree with the decision then please appeal with help from a third party such as CAB or a Disability Rights group. X
I totally understand your frustration, fears and concerns. My first gp wrote on my DLA claim that all my issues were reactive depression, even though he was my gp when I had a car accident that damaged my back and was off work for 8 months, he diagnosed me with lumbar spondylosis, and fibro, and referred me for a hysterectomy and he had been issuing me with sick notes for almost 2 years with these various issues. Not surprisingly I was refused DLA and when it went to tribunal the judge actually said, "your doctor has done you no favours here", but I won my case. So gp's and doctors do get things wrong and they unfortunately do present things in the wrong light they way they say things. Just focus on explaining how you do things and the impact it has on you. For instance a simple thing like loading the washing machine can take me up to an hour because gathering the clothes from the bathroom and taking them downstairs, I then have to rest for at least 15 minutes, sometimes longer because I am out of breath, and exhausted, I then have to have a seat by the machine to load the clothes as keep bending to put them in is too painful and send my back into spasms, or might have an episode of nausea, tinitus or dizzyness and some days my hands are so tender and aching I cannot continue. It is really important to think of and explain everything. Don't be brave, which is what we tend to do.
You are totally right on that, I'm the worst person ever for trying to be strong and put a brave front on it all..I was brought up in care, and sadly most of us that are end up abandoned by the state, i found myself living in a bedsit on £36.15 pw, 3 weeks after my 16th birthday..I've always done everything alone..everything, people in authority can't be trusted, they don't help when you need it..
So I spend the days sleeping, I haven't sought help cos I don't trust anyone, I have mental health issues due to physical abuse against me, as a child and by my 2 ex husbands, one of which caused the most difficult and traumatic events that anyone could ever dream of..I suppose I'm also used to protecting the kids, I'm very fortunate, my 14 yr old takes care of her 3 yr old sister which causes me immense guilt..thanks to my angel, I haven't had to cook a meal in years..even my 3 year old does chores, loads the washing machine, takes it out and gets things for me..I'm very very lucky....that's why I'm praying for an award, then I can put things in place to make life easier on them...
People who don't have this illness have no clue how debilitating it really is, how they can think that anyone would choose this is madness, before my back issues started I was renovating our home, I was an avid car boot nut and was proud of finding bargains...I loved the challenge and was able to go to two car boots and then find bargains in 3 different supermarkets and I did this every Sunday....but now I haven't been to a car boot sale in 3 or 4 years...I have no friends as getting out is is impossible, even talking on the phone is....
This illness has taken so much from me, I try and look for positives, I really do xxx
I think there is a big problem of GP's, Consultants and most health workers putting the wrong information on notes as well as missing out important info too. It makes you wonder if they listen to any thing you say.
I recently found out that fibromyalgia was not on my records, even though I had been diagnosed with it in 1987 and again in 1995, both times by rheumatologists. Because of this I paid for a private consultation with a rheumatologist. I was really angry when I read my GP's referral letter because it did not mention my arthritis and chronic back pain and nerve damage just the fact I wanted fibro confirmed. The consultation lasted 15 minutes and was a scant half body examination where he noted I had fibro and was loose jointed. I have not seen a rheumatologist since 1995 and it would have been nice to have a complete examination, I was paying for it after all but he just got the message I just wanted fibro confirmed.
It's almost as if they do it on purpose in some instances, to make things difficult when applying for benefits, or maybe they would rather not be involved. Whether applying for benefits or not the right information should always been put into your medical notes. When my GP sends referral letters now I always ask to read them.
Hi I had the same thing with my back slipped disk had surgery it never
improved so went back they told me there was nothing they could do
just pain management as im intolerant to all medication I didnt go back
so he wrote on my claim that my back had improved and didnt see
how it was causing problems now. But my gp had evidence of repeated
appointments for the same thing, so I wouldn't worry too much about
one persons opinion, And as for thinking your a liar they treat everone
like that in the hope you will go away. I found atos are liars so stick with it.
I had a numb leg from hip to toe when the disc had gone, the physio said it was the worst prolapse he'd ever seen, my bits were numb and I couldn't tell when I needed the loo..after the op I was told by ATOS that my reflexes had gone in my ankle and leg...
Question for you, one doctor told me that cos my lumbar and neck had gone I had disc disease, this nasty doc wrote I had no signs of it...do you know what the answer is..
I feel for you, it's an excruciating condition that no one can comprehend until they have it...and of course on top of that there's fibro, lucky us eh..
Yes I have all that but I was bounced back to my gp after this shitty doctor at the hospital saw me, I was then sent to the rhumy diagnosed with fibro and haven't been back since 2013.
I too have found what you are saying, they don't even think fibro exists, just after my fibro dx I asked my GP if he was surprised by the dx, he said they always label it fibro if they can't find what's wrong (I know that's bullshit cos there's much more to it than that)
I've had my GP 10 years and he's been fabulous, until this year he's done nothing but be obstructive, rude and makes me feel like crap...
I do have some print outs but as I wrote before there's stupid comments on them ie, I've been gardening, been faking a limp, and am basically lying, this was before the fibro diagnosis though..
I'm preparing for a tribunal, I've tried before and got refused in early 2013 just before my dx came through...they refused me because of ATOS lies and stated I walked to the doctors (I didn't as was still driving) and that I managed to do my school runs (I didn't as eldest has picked her sister up). I presented evidence to prove I was telling the truth and was still refused...I don't hold out much hope...
Why o' why does this awful country not help us, this illness is hell...
I just wanted to ask how is your GP, as they will probably be asked to fill in a form for you. And hope it goes well today. Mental health issues are also taken into account with PIP and it is good to let them know how your health affects your mental health too. But I agree, it is not good if the docs say things like your limping is intentional especially when you have evidence otherwise. If I were you I would just highlight the diagnoses you have been given and how these things affect you x
Hello just to say how it went as I'm not too sure wether it went well or not....my sister took me and was an absolute rock throughout the whole thing, given that she's having her own issues due to working for hitler, it was very much appreciated....
The centre was only 20 mins away, but by the time we got up there I was shattered, it was a very cold day, I hadnt slept the night before and was in agony, I couldn't even keep my coat on as it felt too heavy...I couldn't sit on their chairs as they were too hard and was literally perched on the edge.
The guy who assessed ,e was a paramedic consultant whatever one of those is, and he said he knew a bit about fibro, I explained how I was unable to walk any distance without feeling pain, I was honest told him stuff about my daughters death, how guilty I feel putting everything on my kids, how they have support, how I have professional support with finances, he asked me some maths questions which my sister said I got wrong and he asked me to remember some words which I forgot..
He examined my hands, asked me to raise them which I couldn't, he asked me to move my hands down my legs and I went lightheaded, I guess due to being anaemic as last blood reading was 8.4. After that he ended the physical side of it.
He asked about eating, meds, pets, family that kind of stuff and I explained that I eat if my daughter makes me something, that she has to do my patches, MEDS, food, etc.
He said he thought that my depression was in 2 stages what I had before and since becoming ill, I think he was right, my sister told him how aggressive I get, which I guess is true, how I used to be so active, and now I take it out on people cos they don't listen to me in the way I need, I'd had a do in the chemist just before the assessmemt which I stated.
I told him how I was failing my children and that even if I could manage to do certain activities it would leave me wiped out for days after
Painwise I described the pain, but forgot to mention the burning hands, I said that my neck didn't feel as painful as it did, but I'm resting most of the time, but my lower back, legs are very painful...
He asked about meds, and I took a script with me which my sister gave him, I knew not to carry my own bag, look presentable or to take control of script as in esa assessments it can go against you..
He said back to me about anything I do leaves me exhausted for days so I think he grasped what I was saying, he asked about friends, and I told the truth that I can't talk to people as I feel judged, I'm ok with professionals but feel very anxious when talking to others..that I avoid everyone that the kids take themselves to school, and that I go weeks without talking to anyone only my sister.
He asked how many good days I have a week, I said I have 1 better day per week...but in truth I probably don't cos everyday is the same. I haven't slept through the night in 6 years which really gets to me.
He asked what treatment I'm being sent for I told him I was referred to pain clinic, hydrotherapy and for counselling last summer but I cant go, I'd have to travel there, be in pain, miss sleep, become exhausted and that I see it as counter productive. I've had lots of counselling in the past to cope with my daughters death, I told him it didn't change anything she's still dead, that I need counselling but it won't change anything, I'm still going to be useless...
That's pretty much it, my only worry is that I haven't submitted any formal evidence, and that not going to the doctors will go against me. One good thing though is my dose of meds, I'm on a huge amount of bupronorphine, I've never heard of anyone on more than 70mcg via patches, I'm on 140mcg so im praying they will acknowledge I hurt like hell
I also explained that I don't bath as often as I should as it hurts to sit in the bath as its too hard, standing in the shower makes me dizzy...that I hate my daughter having to help so I don't bath as often as I should or would like..
I'm not expecting to receive an award, I don't hold out much hope..I forgot to take my inhaler or mention it which was prescribed due to morphine suppression breathing....
Ps my gp used to be great, but had a go at me last year over something to do with one of my kids, they won't support anything there's a note up in reception saying they won't get involved with DWP
I could be wrong but I think if the DWP sends them a form they do need to fill it, (but i could be wrong there). From what you've said it sounds like it went quite well and he got a good idea of how it affects you. As you said, he repeated back about how it can make things worse after, which is important. And you had our sister there for support.
Thank you, I felt like it did, and I've been to this ATOS before in Chelmsford and it seemed quite a level playing field, unlike when I've been to Romford which was utterly corrupt (I took my anti depressants with me back then and had a 4 month old baby to raise alone the doctor wrote in report no depressive illness and i didn't look tired!
It's so hard to know until the result comes in, I badly need the money, like most of us I'm struggling.
My sister was a legend, she did everything perfectly..will let u all know, I don't even want a big award a low rate one will do me, just really anything to help right now..
They probably said things like she is looking after the baby alone so must be ok (at the other one). I've had a couple of these and think they behave better if you have someone with you. Also shows you need the support. It's unfair really, those who simply have NO support must struggle Hope you get the award you clearly deserve x
Hello everyone decision is in and just got flat refusal..nothing...I'm devastated, crying and am not coping..I got the letter 5 minutes ago and don't know what to do next...
I scored 6 for care & 4 for mobility....
2 for cooking, 2 for washing, 2 for dressing
4 points for moving around..
Everything I said has been disregarded..but they basically state there is no evidence clinical or otherwise to confirm any significant functional or cognitive impairment..
They say I can make complex budgeting decisions (yet I have a support worker for this)
They say I can manage meds (despite my daughter having to do it, and the only place my patches can go is on my lower back due to skin irritation ans eczema..
They say I have no issues communicating verbally (I told them the truth that can talk to professionals and family but I don't have friends, I'm too tired and that everyone always leaves me and ends up hating me. I did have one friend but she moved over a year ago and no longer speaks to me, I'm too tired to talk to anyone......
They state I can eat drink unaided, (if my daughter doesn't cook for me or get me to eat, I'll have polos sometimes I eat 12 packets a day if she's too busy. She's only 14..
They state I can plan and follow a route (yet the other day I forgot my name, I can't plan any thing from one day to the next...
I don't know what to do next I'm all over the place...please help xxxx
Hello sweetheart - 6 for Care and 4 for Mobility is NOT a flat refusal; its a Standard Rate 'pass'. So, they are not accurate in what they are saying there and them not being accurate in how they administer the points given is grounds for a complaint about it so what I think you now do is make an application immediately for what they call a RECONSIDERATION. Keep calm and, if possible, find a Citizens Advise person to do it for you. Applying for these benefits really is a learning experience. I am in the middle of my PIP application right now. It has made me so mentally unwell I have been near to being suicidal so do not think that you are alone in how you feel about this. I have High Level needs in both components and I am outraged and disillusioned that I should be being put through the hell I am being put through to get what I am entitled to. But over the years of having to apply for these benefits I have learned to view myself as 'entitled' rather than 'begging' if you see what I mean and it really does help if we can alter our mind-set like this. It also helps with the blind panic we feel when in it all. I have just had what they call an assessment but was more accurately described as an interrogation and it went on for 2 hours after being kept waiting for 45 minutes over the appointment time. The 'welfare' professional with me says that there is no rhyme or reason to how they seem to be awarding. He says he has been to assessments with people [and he goes to lots of them] and felt sure they would get the award and they've been knocked back. Others he says who he thought were a bit 'iffy' have just sailed through it. He says that its rather like the traffic-warden situation where, when it gets near the end of the month, they need to step up the quota of people they are catching! If you are the 'target' for that day nothing will save you. Really though I do actually feel that I know how you are feeling cos I've been through it a number of times. Keep fixed on the fact that you ARE entitled and follow the WHOLE process through even if you do have to go to the next level of Appeal. This is about endurance...it shouldn't be but it is. The real key for the assessment is not to go on and on about our conditions but to focus on WHAT YOU CAN'T DO ON AN EVERY DAY BASIS... on the questions where I just answered one-word answers he just moved on to the next question. Where I hesitated or waffled a bit he homed in and interrogated me. Keep it brief but definite... 'I can't...' rather than a lot of information about your actual condition. Do NOT give up...I am thinking of you.
Thanks for trying to help, I was 2 points short of any award, the sections are Seperate care and mobility can't be added together, so what you've written Hun isn't the case..sadly would be nice though, I still haven't heard anything and haven't been brave enough to phone them just yet x
Thanks for the reply...I can't involve CAB as they aren't that great tbh in my town, I'd have to get out of the house, get my sister to come over from London to take me, so she'll then have to take the day off work, I'd then have to sit in their chairs which kills...I'll then be in bed for days...and I'll miss out on sleep..so not really an option..
I need more specialised help than that, I've joined fightback, they told me to apply for mandatory reconsideration and that when it comes through they help me...
I know how you feel, I have applied for esa twice & been refused I am having my pip assessment this Friday & im worried too. I've had no money since last April. My notes don't make for great reading either so I think I will have to fight like you. I have fibromyalgia & ruptured disc in my spine. I was given a steroid epidural last sept without any relief. I saw a differnt specialist last month & he told me that I should never have been given it sad it made no difference. I am on anti depressants & I also get sciatica. It seems that being in constant pain & unable to lead the life you once had doesn't count for much, I wish you all the Luck in the world for Thursday. Let us know how you get on.
Hi Wendy I'm confused, Thursday??? As above I got my pip result today and was screwed over by them!
I got 6 points for care & 4 for mobility...
They proper screwed me over, they said lots that I'm going to have to unpick, one was about my ability to manage finances....I told ATOS how I have a support worker to help with finances as I'm paying the bedroom tax, she helps with DHP, tax credits bills, TV license etc..have huge credit card bills am also an ex bankrupt....
There were about 4/5 different things that they were wrong and lied on...
Trying to think of ways to disprove what they say...
I had the same thing on my second esa assesment. They said I could do things that I hadn't even been asked to do. I know how hard the finance bit is too. I'm in debt & also an ex bankrupt. It's just all extra stress that we don't need.
Thanks, I've got 4 weeks to disprove whet they wrote...I'm not sure how I m Going to do this...one of the things you are awarded points for is budgeting decisions, despite me having a support worker I still got no points for this...had I have done I would have got an award, that's how close it was....
I don't have Facebook, tbh, I can't handle anything like that right now...
Appreciate all the efforts that go into the 6 weeks writing the thing. Really wish you good luck this time Ellejm. (Totally respecting what works best for you yet just in case useful to consider, I'm also unable to get out and so I reach cab via email). xxx
Yes - this I think is common. You are not alone! The medical profession and, in fact, the whole of the healthcare professions are unwilling to phrase the situations we are in in the way that the assessors for PIP and other benefits 'mark' them. This is because, of course, the questions are not phrased correctly. This, I think, is a deliberate intention of the DWP [and ATOS] because it will get lots more applicants failed which is what they want. Also, not all healthcare/medical professionals will answer the questions put to them with thought about what it is going to sound/appear like to the assessor when they get it. One of my healthcare professionals only a week ago received a form from ATOS about my application which, if answered the way they had worded it/wanted it answered would have taken her two days of ploughing right through my very extensive medical records. Even then, it would have been impossible and it would also have been impossible for my GP and other professionals who input to me. This professional DID fill in the form taking great care what she put bearing in mind the criteria the ATOS/DWP are using but this requires knowledge of the form and the questions and the attitude of ATOS/DWP. She also stated quite clearly that she was of the opinion that the form itself was inappropriate and unacceptable. Not all professionals would do this. A lot just ignore them - I've had that happen. Others fill them in with a lot of waffle which means that they themselves cannot be questioned and accused of putting things that are not true. Also, they do not see it as their job as NHS employees to be filling in these forms at all and a lot of them feel that they should be paid for doing so [over and above their salary as an NHS employee of course]. It is not apparently part of an NHS employee's job! Also a lot of them have their own, unvoiced of course, opinions about whether people should be getting benefits. This is a minefield and there should be an open debate about it and these professionals should be forced to submit support letters which cover the issues as they are for the person concerned. I have had to get these support letters many times and that alone has made me almost suicidal. This latest time which I am in the throes of at the moment the welfare person doing the application for me has not bothered to even try to get them for all the above reasons. He is putting the application in and waiting to see what, if anything, we need at reconsideration and appeal stage. The trouble with getting letters from professionals is that they let you down rather than support you. I had my Assessment last Tuesday at a centre. When we got there the person doing it admitted that I should never have been asked to attend and should have had a home visit and....since I am 66, my DLA should have gone over to automatic unreviewed Attendance Allowance and I should never have been asked to re-apply as PIP! So there you go....as long as you know that you are entitled and at what level always keep that in mind and never give up until you get it...yes, its stressful...you are not alone!
So pleased for you I got a lump sum within the month but mine was only 10 weeks , well done 👍 I failed my appeal for pip and did a straight turn around did a fresh claime and got enhanced rate for both for 5 years. Which apparently is rare it's as good as it gets You can now flame £62 . Week cares allowance if you live alone or if you live with someone and they earn less than a £110 per week they can claime it for helping you 😉 Good luck , nice to see someone else win xxxx
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especially when you have evidence otherwise. If I were you I would just highlight the diagnoses you have been given and how these things affect you x
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