Janette ( morrison) who is being treated for PMR and has been sharing how low and desperate her situation has made her feel, has asked me to ask you to help her. She has to write an appeal against being denied sickness benefit. She needs a form of words or good links to demonstrate why she is unable to work at this time. She is a lady of 62 and her PMR is still active.
Any contributions to enable the decision makers to understand our disease and how it incapacitates us would be gratefully received. Especially from anyone who has recently negotiated the system.
Without sickness benefit ( not sure what it is called now) she will be required to work and demonstrate her efforts to obtain full time work daily.
Yours in gratitude Jane.
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SheffieldJane
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Hi Jane, I am more than happy to be Morrison's "Ghost Writer" and word-smith a letter to go with the supporting, corresponding documents... I would need all the "factual" stuff like relevant dates, (i.e. timeline of events), list of medical tests, scans, etc, list of meds, overview of successes and failures during treatment, comprehensive list of disease symptoms, steroid side effects and steroid withdrawal symptoms, and most importantly; the physical, mental and emotional impacts the disease and treatment has had on her and her family. Happy to help!
That is an amazing offer Melissa. Clearly this would be better done via private message. I am sure she will be very relieved and DWP won’t quite know what’s hit them. 🙂 She already said she’d be looking at your big descriptor rant. You are right, dates, facts, how it impacts on life, need to be put clearly and concisely. Staff are as trapped by the system as the recipients of it. 😘
Hi Janette, Look at Rose’s and Bj2016’s advice too. It is specific to the U.K. Benefit system. A pretty mechanical process. PM me if I can do anything. Keep us posted. 👍
Thank you so much Jane. My head is spinning and I feel physically sick trying to sort everything out. Just feel like curling up in a ball. But needs must. Xx
After this baptism of fire, my guess is they will leave you alone. Courage! You’ve got a little army. Do not gloss over the psychological impact this has had, it counts in the decision making process.
Thank you Jane for your encouragement. Just wrote a very long email to Melissa. Bless her for her help. I feel a bit like a headless chicken at the moment. But one day it will be "A BRAUGH MOONLICHT NICHT THE NICHT." xx
Know how you feel! I cannot deal with any stressful situation at all - my go to response us to just cry!
I'm needing to write a cover letter for a job application at the mo and I feel that I cannot string two words together coherently. Need to find a 5 day 8-5 job and not caring 7 days a week from 7 am to 11pm and somethings for the meanest people!
Sorry this is so hard for you at present. I'm a fairly new immigrant and do feel really alone and out of my depth most the time.
Keep it simple, friendly, keen and brief. All the facts are in your application form Slosh. It must be very hard in a relatively new place.PM me if you want a proof reader.
It will get better. I am just a little downervous on my luck at the moment. Put things in boxes. And deal with one thing at a time. That was what I was taught. Xx
We have to learn that as mums and Nanas with jobs and lord knows what else to contend with. PMR is when they all topple on to your head. This too will pass.
Thank you as this is very useful for me too. I have an occupational health meeting coming up soon , the thought of which is giving me a lot of anxiety. This has given me more confidence. Thanks 🙂
She needs to look at the descriptors that she has received no points for and write what she disagrees with.
Stating she has a illness and takes medication is not enough
So it needs to be
I agree that I may be able to move a large empty box however if this was a continuing task i would over excerpt my muscles and then my body would do one of two things
1 I would have to rest the next day as would be fatigued and in pain
2 I would have a flare which would set my recovery back and have to increase my medication .
Work on this on very point she has been turned down for .
She is very unlikely to be placed in Support Group but may get put in work related group .
If she needs any further help I will be around tonight but am just going to work
That is so specific and helpful Rose. Thanks for sparing the time and energy to do this. I am lost in admiration for you still managing to do a job of work. I am sure she will make good use of your help.
Hi SJ with your assistance and Melissa and Rose's I am sure she will do 'well'. As I am in Australia and not sure about other systems I may not be much help - so will stand back and let those with appropriate and superior knowledge assist with this one. We all obviously wish her the very best with this.
It’s really hard to be articulate when you are pleading for yourself. I find it hard anyway. The words flow on behalf of someone else though. The retirement age in the U.K. for women was raised from 60 to 66 in the U.K. with little prior warning. I wish they were as quick to sort out Equal Pay for women!
You are so right Jane. I find it so hard to speak for myself but give me some one else to help I can't write or do enough. I am now in tears of frustation and wondering why I am even appealing. The stress levels are just too much. But I will feel better shortly. Xx
Rather more warning than in Italy - where it went up from 60 to 65 overnight and is now 67. At least mine in the UK was introduced in stages! And in Italy they can't understand why the youth unemployment has been rising - apparently they don't see the link with 5 years or so of no older women retiring...
Please see my reply to Morrison's previous post. You really need to know what are the questions trying to elicit. Knowing (as Rose says) what the descriptors are and what the panel will need to know. The questions may say "can you do such and such" but your answer will have to take into account whether you can do these things safely, reliably and repeatedly and in a timely manner. There are many unspoken questions that you won't know that you need to answer. That's why you need help. Melissa's offer of assistance is great, because her experience of both GCA and PMR means that she has that side of it covered. You do need to know what "they" are looking for, though, and that isn't five minutes of a job, it will take some research. I may be telling you something you already know, if so, apologies. You can,if you are going to a tribunal, add information at a later date but,as you will know, the appeal forms must be sent in within the deadline they have given you.
it would really be useful to you to get some face-to-face advice from someone before your appeal, as well as the help from mamici.
Good luck. Please let us know how it goes. Stress,stress and more stress. At a time when you're already feeling low, you really don't need it.
Thanks Bj2016, That was helpful. I was under the impression it was like a "free form" letter, or personal statement, but it sounds like it is a very specific questionnaire need s to be completed.... Maybe Morrison should complete the questionnaire and I can word-smith, expound on her responses... if they need it?
It really depends on what stage she is at. If it is a letter for a tribunal it would be really helpful for you to see relevant parts of her original application so as to address the specific points where the decision maker has decided that she is for for work. I am out of date because it is about 4 years since I went through this. She should have a letter, I think, outlining the decision and, in that case, you can dispute the findings. If she is going for "mandatory reconsideration" (a technical term!) it is my understanding that few people are successful at that stage. If the letter is for a tribunal, and there is insufficient time to address all the necessary points, a free form letter would get the appeal started within the deadline, and other points can be added later. In any case I would sincerely urge Janette to get help, CA B or whoever, and benefits and work website is really useful too.
The original application is a questionnaire Melissa, and 'free form' letters are included at the end in additional information in support of the application. I understand this is an appeal so you will need to see the already completed application.
it's some years now since I completed for my husband but haven't forgotten the stress..
Has Morrison tried the Citizens Advice Bureau. They are good at helping with forms and letter writing and will even attend tribunals with their clients. At least they used to but I’m out of date now.
Hahahahaha! Yes, I once told a female, airport, security person (who I thought was being a little overzealous in her very thorough pat down of me) that I had not been "felt up" like that in years... I don't think she was amused! : [] Oops, sorry
CAB are pathetic here. Tried that. I knew more than the person that I saw. I am also fed up giving my personal information out to complete strangers. eg., bank statements etc to enable me to claim for any benefits I am entitled too. Feeling cross.
I’m sorry to hear that. My late husband was a CAB advisor but his expertise was advising with the finance side. I seem to remember that when he left he was not happy with the way things were going. Obviously things have not improved with the volunteers. Cut backs in funding didn’t help.
I feel for you but can’t suggest anything else. I wish you all the best and hope that someone may have the answers you so need.
Good point Patricia. There used to be specific Benefit Advice centres run by volunteers. I wonder if that went the way of all things good in the austerity measures?
The best website I found was Benefits and work. If you want to use their guides you have to pay a subscription. I'm not sure exactly how much, but it's less than £20 for a year. It was well worth it for me, as both Citizens Advice and Welfare Rights were appointments only, with a waiting list.
I went into the whole thing with the mindset :- I can't do it, I only need to tell the truth and they will be able to make a decision that I can't do these things. I'm sorry to say that it didn't work like that.I
If the retirement age hadn't been moved we would both be retired by now. I will be almost 66 when I am able to retire.
Even if you don't join, I can recommend looking at the benefits and work website, along with any other agency that people here recommend. I was also advised to ask AgeUk but, in my area anyway, they said they had no expertise in ESA appeals.
You need to know what the descriptors are looking for, and how many points each answer can earn. The only way to find out these things is by research, and preferably help from someone who knows. The way I approached my appeal was to say that I hadn't thought through my previous answer - the truth, because as Rose said, you may be able to do something once, at home, on a good day, with great effort, but you could not do it reliably, repeatedly, safely etc. Sorry if I'm on my soapbox. The whole thing wore me down. The worst part was that I have an invisible disability and I felt that I wasn't believed and was being treated as a scrounger.
One last thing, unless you have obtained it yourself, it is highly likely that they haven't any information from medical people who have been treating you. You can ask your GP for a letter but you may well have to pay. Tell your GP what areas you need the letter to cover, if possible in person. Ask for the letter to be sent to/picked up by you. That way you can see if it would be helpful to your case or not. If your GP doesn't know you well it may not be!
It does sound like there are a lot of resources out there who do this sort of thing regularly... I am happy to help in any way I can, but Morrison, if you'd like to check out one of these recommended services, who do this sort of thing as a "real job," I would not be offended. : )
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Sometimes the mere act of getting external help can support the idea that the stress anxiety etc impacts on daily living and that applying for benefit us stressful. That is not a lie you have asked for help here for that reason.
I wish I could be more helpful but it's a few years since I was put in the support group having spent 18mths in the work group.
I have learned through ESA and DLA, now pip that you limit your discussion only your worse day scenarios. As someone else has said you might be able to do a task once but your experience of the illness and delayed onset muscle soreness pred head etc mean that you are constantly in a heightened state of anxiety about being able to do those tasks. The stress impacts inflammatory illness and illness causes stress. You are NEVER without pain/anxiety and fearful that your body will let you and any employer down. Even if you can walk 22ydd or whatever you have constant pain./Anxiety They assess you while you are waiting and how you enter. If you use a stick when you get tired then use it. I have to use a crutch at all times and have done for years now. The main thing is to cite the paper that detailed that PMR us 2 to 6 years and for life in some cases. If you have osteoarthritis high blood etc etc they all count and as a culmalative effect are debilitating.
I hope you can get it to tribunal. My best friend used to sit as a nurse on panels for DLA. She used to kick drs under the table when they were dismissive of conditions like fibromyalgia. I hope she is there in spirit giving the assessors a swift kick in the shin. 🌻🌻
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Poop. That's how assessment seems to work. Very stressful. Went through many times of this with OH 25 years ago with her M.E. (yuppie flu!) System power poking you further in the eye. Great back up from her doc. saved the day.
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My neice has had ME and associated issues and is still waiting for results of pip 5 weeks after the visit. Until drs start getting these illnesses they don't believe they exist. One of the drs at my practice doesnt believe in fibromyalgia...appts with him are usually fun not. But now I have PMR he is much more sympathetic 😂😂
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M.E. Seems very similar in body/mind crashing & energy rundown to where I see myself now. It is the disbelief in some docs. that pisses you off. Thinking all is measurable science. blah.blah. Maybe! Eventually. No way at the moment.
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Yes. Until they invent ways to test for a condition then it doesn't exist. Literally in medical terms.
I have a lovely GP who I know well. After an appointment last week with him or should I say 15 minutes of sheer frustration and crying, he supplied me with water, a huge box of tissues and told me to rant and ramble as long as I wanted. It was his decision really that made me decide to appeal to ESA. He has also promised me a letter to go with forms to appeal.
Spoke to a colleague at work who deals with job centre - when you are asked to look for work you can count "reading paper (job adverts), passing on CV, working in CV, phoning people re work, talking to A N Other about work etc. I am sure if there is no avoiding this, we can help you be creative. Say you work 14 hours and they tell you that you need to find another six hours work each week, then six hours is the time you need to spend looking for a job. That six hours can be spread over the week. I am currently looking for my daughter and the fact that I am looking can count towards this total. Probably not the answer you are looking for as avoiding this whole horrid necessity to work whilst incapacitated is the ideal. But sent in the spirit of being helpful.
Thank you for your help. Unfortunatly I had to give up my work after 25 years as a school photographer as I couldn't carry the heavy equipment any more. Also my eyesight deteriorated somewhat. I would gladly go back to that if I could or any other job if I didn't have this chronic fatigue and all the other repercussions of this horrible disease. Not feeling sorry for myself just worn out with it all. Sorry for the rant.
I am in the same boat after having my ESA stopped in January after an interview with a " health professional". I presented letters from my doctor and mental health supporter at mandatory reconsideration level, also rejected. Now awaiting Tribunal hearing and totally overcome with anxiety and depression. Brain and body often incapable of functioning. I have the support of my local benefit advisor and we will draft an appeal together based on the DWP descriptors. It is a horrific minefield for honest sick people like ourselves who expected to retire.
The Benefits and Work site is brilliant and well worth subscribing. I wish you well with this added battle of PMR.
Marvellous responses with specific advice and offers of help - just want to add thanks to Jane for mustering the PMaRmy and my heartfelt good wishes and courage to Janette.
You need to step away from the screen. It’s dry, cold and sunny here. If it is there, why don’t you have a little walk outside - wrap up well! Deep breaths of fresh air and look at the little signs of spring everywhere.
I have negotiated the system for my husband - some time ago now but it's still fresh in my mind how difficult it was.
I can't offer too much time unfortunately as I care for my husband but I did learn a lot and if Janette wants to message me privately I'm happy to give hints and tips to assist her (while still taking Melissa's offer of help if that is what she decides to do).
I was awarded ESA and put in the support group. It took a year and I used Benefits and Work to help me complete the discriptors. They also have guides on appeals and how to continue getting your money without a stack of job search requirements. You can get your Doctor to sign you off again now but adding in stress and anxiety to the mix. Present this to the job coach and they should give you a break from the requirements.
Make sure that when you do the appeal letter you mention ALL of the pred side effects that are affecting you including the psychological ones that are being exacerbated by the DWP process.
I see someone has mentioned the magic word of "reliably, repeatedly and safely". You need to think about this when applying it to the descriptors and ALWAYS refer to you're worst day.
If you think I can help please do get in touch.
I love my hobby photography but have a hard job doing it with my dlsr as its so heavy. Currently using a little Canon superzoom when I can get out. No way could I cart photo kit about now even as a hobby. I had to stop working as an exercise teacher so know how you feel having to give up what you enjoyed as too sick to do it and then to negotiate the minefield that is the DWP benefits system. Compassionate cruelty as Ken Loach said when he made his film I Daniel Blake (worth a watch if you want to know how bad it is to get benefits these days).
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