Hi there up early so thought i would tackle this .
This subject provokes lots of emotion for lots of people in both camps , here are my thoughts from personal experience.
Do i think the system works, absolutely not.
Heres why.
" normal " people are force fed the idea that everyone can work , with paralympians rightly promoted at every opportunity, then such dreadful T.V propaganda with benifit cheats and the like. Its no wonder there is such a stimulus attatch to real people with debilitating conditions.
The great british public are now of the opinion that everyone should work. Im sorry but in my opinion this is brainwashing extrordinaire.
Its my view that yes there are people out there who should hang their heads in shame claiming everything , playing the system. It is also my view that there are masses of people being victimised by the system. A system which is a box ticking exercise , a way of enhancing government figures.
I have CRPS full body and now affecting
Internal organs.
I did recieve DLA for a number of years
On one review of this i was asked to attend
An assessment. So luckily i was having a good/ bad day so managed to attend. Heres the kicker on this if im having a flair up and cant get out of bed to attend money would be stopped. If i struggle and attend , clean and tidy i know whats going to happen.
Bit of a loose loose situation.
On arrival do i look "disabled" to someone with no medical training , probably not.
So immediately the decision is made in their mind.
My first question before anything was said was Do you have any medical knowledge of how CRPS affects the body. The short answer was no. The long answer was a body swerve that the system coveres everyone.
I obviously dont agree , i completed the assesment which is full of questions where im damned either way.
One simple example is the question
Can you walk a certain distance unaided.
WITH 2 OPTIONS
YES OR NO
So if i say no im lying because on a good day i can .
If i say yes im lying because on bad days and flair ups i couldnt.
I tried to explain this was impossible to answer. As were most of the yes no box ticks.
This took around 1 hour and resulted in me having a huge flair up.
I now am totally stressed in lots of pain bed ridden 90% of the days awaiting the result of findings from someone with no clue of CRPS.
Results are in i was told i would need 15 points. I scored an unbelievable ZERO.
Proof the assesor had no idea of CRPS
And he didnt listen to a single word.
APPEAL lets go.
Fill in all the forms again .side letters from top uk doctors etc.
Then out of the blue i recieve a call, a very polite gentleman ask if i was ok to chat.
At this time i was laid on my bathroom floor , in lots of pain , after a shower my right hip popped out, a regular occurance for me.
I told him this and as i was unable to movr i wasnt going anywhere so yes free to chat.
I wanted to get the appeal over with it was just so stressful.
He asked a number of questions , i asked the same old chestnut, do you even know what CRPS is, which was body swereved like an astute politician being asked a yes or no question.
Result in .
ZERO points.
So you can all probably understand my rant.
Did i appeal again. Not a chance. I could not go through all that again.
Result mission accomplished by the government. One more stat on the disability figure reductions. So well done to them.
A foot note to all "normal" people out there
Before CRPS i was also normal. Did i ask for CRPS absolutely not. I was diagnosed after an accident . An accident is something unintentional that happens to you. Through no fault of your own. It just happens hence its called an accident.
So in reality all normal people are only one incident in life from being in this position.
So spare a thought the next time you look at someone and say there doesnt look lime there is anything wrong with you.
And rember there may come a time in your life you need these people at PIP.
RANT OVER
Thank you all for listening looking forward to the responses.
Dave
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Davek723
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I have severe sciatica, but not all of the time, so to most people i.e. everyone except husband, I probably look quite normal. Many people just don't 'get' fluctuating, chronic conditions.
I used to work in the NHS and always said I'd rather my taxes went towards a system which paid for a few people who shouldn't qualify for benefits rather than one which actively penalised people who should benefit in the hope of catching the odd one or two out. What's going on is truly shocking.
I hope the spirit of what I mean comes across. Been up with nerve pain since 5am, meds not much help etc, difficult to think!
Lyndsey have you had an operation? Where's your nerve damage from? I had op for prolapse disc and my sciatica is worse than before. Op was a success but I'm left with nerve damage from it being compressed for 3+ years before my op. The pain is terrible xx
No I haven't had surgery. My spinal cord is tethered, it's a mild form of spina-bifida. My spine is good in terms of the joints and discs etc, it's just that having over stretched myself a few years ago the strain kicked off nerve pain i.e. sciatica. Surgery to de-tether could leave me paralysed and/or incontinenent so I opted for pain management!
So sorry your pain did not improve, that must have been a terrible disappointment xx
Oh my goodness x take good care and thank you for your reply x
Hi I would recommend you appeal and get someone like CAB or a local disability group to help you fill the forms in. I was told to describe your worst day. The problem with a tick box system is there are no grey areas so you usually have to say yes or no. Enough of the former and you don't get your benefit, enough of the latter and you do. It's the way the forms are worded.
The other thing to remember is if you need help and you don't get it point that out to them. You need to be able to do things in a timely manner and without too many problems. If you say you can't then you will get the points. You also need lots of paper evidence from your doctor, consultant etc. and take those with you.
I think it is done this way deliberately so the least amount of claimants can qualify for PIP, which as the Govt. admitted, was set up this manner to save money.
I dont think i could go through all the stress of re applying. For something i believe is a condition that is or was listed as a qualifying condition .
Its a bit sad but i made my self more ill worrying about it. Then the result twice freaked me out so much . It made me stressed enraged etc which all had negative impact on my life.
Hi I understand that as the stress involved is horrendous. Maybe you will change your mind in the future. I do know it's not what illness you have but how it affects you and this is where the wording of the form comes in.
The problem is DLA has been phased out and replaced by PIP so being awarded for life means nothing now. I DO feel for you because I also was awarded DLA for life. I have been awarded PIP although people keep saying I should appeal the decision i.e. Rates I receive. I haven't because am too scared that will take away current level of award!
Having said all this I DO think you should have continued to appeal the decision. You went to tribunal for DLA and won so could well have done so with PIP.
Maybe reconsider applying again - get help to complete the forms CAB helped me - and keep going......
If I had been turned down for PIP I would have had to appeal. Not just because of the money but also things like my Blue Badge which I rely on.
From your powerful description of your circumstances, I don't understand how you will be able to manage if you don't receive PIP.
I've seen a lot of people say that they've had good advice and support from Benefits and Work website - I'm unclear about whether you have to join them and, if so, what the subscription is, but it might be worth a look? Or if people can discuss their experience of them?
You are not the only one Dave there are many people out there who have had undue stress added onto their bodies and yes minds, that make people living with "Chronic Pain" feel terrible (as if they needed any more) and the many thousands of people re-assessed as to their disabilities and needs, and I'm talking about people loosing their Mobility cars, (although the gov't dep't cleverly avoided any severe criticism by giving a one off payment of £2000, but I don't think it's entirely fair to say it was just to avoid a bad press it could have been just to ease the transition, either way it has caused so much distress to so many of the most easy targets of this policy of saving money just so that the elites can put much more money into off-shore accounts through Tax avoidance scams and loop-holes.
I don't know what causes you CRPS but I for one would love to be pain free and they could have all my benefits just to be able to be pain free and would love to be no burden to anyone, and worse still when your society point's the finger at you and blames you for costing too much to keep in (as the right-wing media companies highlight every evening) luxuries.
So I do feel for you and the distress that it is causing you as I've been there myself , because nobody needs to have the added pressure from outside as some of us do enough of it to ourselves each and every day, all the best to you Dave
I posted more to let people know how things are going in this country.
How things like TV propaganda is turning so many people against those of us who claim benefit.
I worked from leaving school until my 30s. I had a super job which was rewarding both mentally and was lucky enough i was extremely well paid. So over my life paid in masses to the tax system and national insurance .
I had no intetion of giving up working but for an unforseen accident which completely altered my life.
This was more my point that people never know what life brings. As many on here will support.
My point is im sick of being demonised for mentioning a disability because of the stigma. Point in case is the bain of my life. Saints and scroungers.
If i were to recieve any government funds i could guarantee that on a good day i could be vidoed walking to the shop or carrying some bags etc.
So would be labeled a scrounger. Lol
At no time would i be filmed crying trying to sleep or get up stairs my leg muscles twisting and distorted etc etc.
These assumption make me very angry.
Cheers for all the advice on pip.
I am currently being supported financial by my partner and using savings . Not ideal but cut our cloth accordingly so we get by .i have learnex the hard way money is not everything.
Although not recieving what im entitled to is abit annoying to say the least.
Dave the stress the appeals/assessments all of it causes is atrocious and it's so stressful. I managed to get to one appointment and was told my assessor wasn't in and I'd have to come back. I burst into tears because of the effort it took mE to get there. I said well I'll wait for a no show because I simply can't get up here again. An interpreter didn't show so I was lucky and had this assessor.. the receptionist said see no need for crying... they just don't get it. I went to tribunal and I felt like a criminal. 0 points. The whole experience knocked me for days. I felt like a fraudster. My condition has worsened and advised by SSAFA to try again. I was in a right state. I am a worker bought up 5 children who are hard workers lost a son in Afghanistan never had a benefit in my life until this op. I managed to receive lower standard pip and I am so grateful. I now have an ESA Assessment looming. It's like living on edge not knowing if you're financially secure or not. If I hadn't of got it this time I would have paper appealed but there was no way I'd have done the tribunal again. I would have gone to my MP. I am still going to write to him to let him know how things are. It annoys me so very much when genuine people in pain are not awarded from a system that we've paid into. Bless you please try and find the energy to try again xx
Hi Dave, I did read your story and I am sorry to hear you are one of those on DLA who where refused PIP. I myself feel no one should be reassessed unless they have to make a new claim, the old decision should still stand. Sadly the government don't agree. I went through similar stress to you for DLA, why should disabled and sick people have to keep going through the same ordeal. You are correct about the yes/no forms and assessors that know very little about how chronic illness disables you. I literally had to say I could not walk , I can with pain ect but if I said yes they would reject it. The rules are not just a matter of yes or no however assessors use that criteria too. They also place high emphasis on wheelchair need and walking sticks, but using such things for some sick persons is not an option. While others could not manage without them. Hope you feel better for your rant, you have every right to. The system is very unfair, but I would re appeal as that is how I got mine , by persistance. But understand your reluctance to do so, as the process can be very demeaning and stressful. Oh and Dave if you have more than one chronic illness or disability they are supposed to consider the multi effects which is not covered by yes/no answer form. Plus the rule on passed illness that could return has not been changed as far as I am aware. I am sure with a good representative you could win an appeal, after all people work and get these benefits as they are to help you maintain independance or pay for help you need. Every Best Wish what ever you decide.
My teenage daughter has CRPS. She was diagnosed when she was 11 and is soon to be 17, so we have spent 6 years living with the symptoms you have described, we have good and bad days. On a good day she is just another teenage on a bad day she crawls up the staircase or has to be lifted up to her room by her dad. She screams if you touch her arms or legs and can have blue limbs one moment and flaming red limbs the next.
I have had to fight for treatment over the last 6 years, health professionals know nothing about the condition. But my persistence paid off and she will be admitted to a specialist CRPS pain centre for adolescents at the end of July. It is residential and the idea is to help young people with the condition learn to cope with their condition now and in future.
This is where my worry as her mother begins, with her FUTURE. She is hopefully off to university in couple of years and then on to her independent life. Her CRPS is with her for life. Like you she didn't ask for it, it came following an accident. So it happened to her and I am sure she would gladly give it away.
When she has good days and is in remission, I think she will conquer the world. But when her bad day comes she is so disabled, she can manage to do very little. The condition can be progressive, but I tend not to mention this to her and we look at getting her back on her feet straight away. We as her parents are luck because she has remarkable inner strength and resilience for a young person. She is a fighter. I am hoping her fight doesn't leave as she will need this in later life to combat her condition, people's perception of her disability and inequalities in health and social care.
I can empathise with you and the strength needed to keep fighting this battle, but please do give it another go. It is difficult without a doubt. You need to answer the questions as if it were worst days. The days when you can barely move, or have anything touch your skin because you are hypersensitive and everything hurts, the days when you mood is so low you wish your body wasn't yours. You will have to spell it out to the assessors, especially if they have little to no understanding of the condition. Have a look at Ropers Activities of Daily Living. Much of of health and social care documentation is based on these activities.
Good luck with it all and keep us posted. I would genuinely like to know how you get on.
Hi there. Big up to your daughter for being such a fighter. Give her my best wishes .if i can give any advice pleasd get in touch or pm .
Ive now been nearly 18 years
And will gladly help in anyway.
One of my biggest friends is that i am positive in life.
Where crps is concerned this is very important. Understanding the condition is important.
Using your mind to realise triggers etc. But when a flair up occurs i find it important to rationalise it as something that happens to me i understand it and dont go spirralling mentally.
Im sure your daughter will understand this.
You are doing all you can which is awesome i know my parents and partner struggle to see me bad . But they are always there if i need. Your support will be invaluable. My parents are now at a point where they know by looking at me but they dont fuss they wait till i ask for help otherwise they just let me get on with it. Sounds mad but people being over fussy can cause fear for me etc making things worss.
Sorry to hear that Dave I'm arguing at the moment too, I have severe damage to both shoulders and I have had ops pain injections etc for sciatica contestant back pain with it. Anyway I was awarded pip lowest for but because I told the truth that my sciatica had changed from constant to variable and when it's there I cant even move, now bear in mind I use a stick and can only drive automatic and my wife uses this to work, and I use aids for walking bathing ang getting out of bed they only awarded me four points on mobility so basically I can't get a blue badge! So if I go to a hospital and get there and can't park close enough I have to cancel right there and then in the car so a waste of an appointment! This is so frustrating if my sciatica varies I don't park in the disabled I try to walk even on a stick. I complained and rang them explained and they said they would consider it they said they didn't want any more evidence even though I had new stuff for them to prove again what I was saying but no they wouldn't have it just went over the old form and I didn't get the four points! So I get no mobility badge have to struggle walking or cancel appointments at the moment even though I need them to "get me back to work", crikey it's sickening their manifesto it's oh no we can see your ill your doctors have told us - but ......... we don't believe you! On my pip examination, the dr wanted to look at my back scar then asked me to get on the bed do exercises I couldn't, THEN stood watching me in tears trying to get up from the bed even though I was crying out and in agony until my tiny wife came rushing over asking him can't you see he is stuck what kind of doctor are you? End off rant but in the car park my wife went back in to complain my HR went up to 146bpm because of the panic so like you said pip off!
I had a funny feeling my early morning post would provoke lots of feelings.
My initial post probably came across as I was looking for advice on pip. To be honest I cleared my mind of this long ago, if I was to dwell on the injustice I would end up over the edge so to speak.
I was trying to point towards the way other " normal" people are beginning to perceive those claiming disability. It's kind of the way people were conned into believing that immigration and asylum are one in the same. ( oops that might be controversial lol)
Anyway I wish you all the very best hope you get what your entitled to.
Fully understand where you are coming from my friend.
It must have been so stressful the whole DWP procedure is humiliating and downgrading.
As for ALL the bloody tv programmes depicting people on Benefits having a great time organising holidays and weddings etc.... the producers should hang their heads in shame often obviously depicting people with obvious special needs coerced into doing things or saying things that would obviously aggravate tv viewers who are being distracted by these so called entertainment programmes.
While the vast majority of the governments purse is being squandered and looted by people who we are told are pillars of the community.
My favourite thing to hear on any of these waste of license payer money programmes . It's when someone is being recorded, doing something the programme suggest they shouldn't. What usually follows is a comment from some low end celebrity who calls themself an investigative journalist or some other jumped up title, who are only doing this because no one will employ themy as an actor. Oops offor track lol
The comment is do they look disabled to you,
Or worse that they don't look like they are in much pain.
Firstly there are many people who are disabled that to look at them you probably wouldn't instantly think they had a disability, my mate has one leg so used a prosthetic, if you sit with him you wouldn't know, then we get on to cancer I have met numerous people with cancer who to look at you would think not disabled, there are to many instances to list, but just because you don't see it does it mean not disabled
Then we have don't look like they are in pain,
How can someone be so stupid to suggest they can see pain , I'm pretty sure it's not a visible concept. You could be in a wheel chair look disabled but not be in pain , but most people will assume because of your chair that you are in pain.
Pain is not something anyone can see. So these people making ridiculous comments should be ashamed, the work they do is causing people with real problems, who suffer to be vilified by everyone.
Wow, that felt good getting that out lol.
Hope you enjoyed,
All the very best to each and every person who replied it means a lot to be heard and understood by so many.
Thank you dave
On a lighter side general election , should I stand lol
The 2 candidates we have, it's like someone asking you to vote on your favourite serial killer lol.
With PiP to get favourable outcome you need to seek assistance with an advocate who knows about the expectation of PIP and work with they from filling the form to practising potential interview questions and they will highlight expectations of meetings. Also going with someone to witness your interview preferable someone knowledgeable with PIP. Only then can you get a more fair outcome. Crazy but some of those healthcare personnels lie about what you say and even add things you didn't say to impede from getting something. Somehow the system has no in -between, it's either you can work or you can't work so becomes hard for someone who feels better one day and crap rest of the week
Hi I am new to the forum and was reading loads of posts and yours kind of hit a note, was a bit more informative with things that you had done personally and what other people who responded to your posts suffered from or had done.
In Oct 2016 I had a 7 ton machine roll over my right foot and ankle causing a bit of a mess, I was told by the trauma consultant 3 days after the incident after he had looked at the x-rays ct scans etc, and after consulting with his colleagues "Good Luck and choose a different vocation" even though I had not mentioned what I did for work, this set alarm bells ringing.
Anyway, I was diagnosed with crps in March this year having never really recovered from the incident and was placed into MSK pain-management pretty much straight away,
Did you appeal your original pip decision, I have just been rejected and told to make a new application as my diagnosis was after I had made the application but before the dwp decision therefore my diagnosis could not be taken into account.
Hope you are still managing to cope and have more good than bad days.
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