A few months ago I asked for a review due to my change of circumstances, my condition has got considerably worse. I have high rate care and standard rate mobility. My care at that time was perfect but my mobility has worsened. I can no longer walk far without stopping to rest my foot, my husband has to help me by linking him or holding his hand to steady me. I have had a few falls getting in and out of the car, I can't drive anymore and I have to rely on my husband for my care and mobility, he even has to help me wash and bathe, due to having 2 very bad hands due to arthritis, carpal tunnel syndrome and tensynovitis in my thumbs so you can imaging how bad I am, plus I need 2 operations, on my hands and foot, my foot has severe arthritis in my big toe and I can't bend it to walk, the problem is I have Complex Regional Pain Syndrome and I have to have a specialist team doing the operation. This morning I had a letter saying that my care has been reduced to standard and they have stopped my mobility award. I even had to give up my small job that I had due to not being able to walk or use my hands. I have actually told them this, this morning over the telephone for a mandatory reconsideration. I am not holding my breath. If need be I will take it to tribunal. How can they leave me like this, disabled and with no money to live. Has anyone else had this problem and what did they do about it?
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Imagine1
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yes firstly i would never ask for a review for this reason, they act like dictators , really you should have waited for them to send you your review , now you have done it , appeal it will have to go in front of a board, they board are independent, make sure you have all your medical history with you going back as long as possible , that will cost you in my gps its was £50 and that was 4 years ago, take in all your aids that you need to move around, in my case ive have a croninc leukeamia, incurable suffer with cronic fatigue, artritis in spine neck knees ankles. shoulders, carpol tunnels disease, heart problems, plus other health problems and the refused me on appeal i had it back but mobility at lower rate, i feel i should get the higher rate but wont do anything till i get my review good luck with your appeal but be prepared for it, as its like a court that you go into ,
Thank you for your reply. I asked for a review because it was coming up anyway, I had a letter the week before telling me it was due. otherwise I wouldn't have asked for one. I have been to a tribunal court before and they are awful and I never got my benefit back this was for a work based one, they saw how ill I was and that I couldn't walk and they still refused. I think it is terrible how disabled people are treated it is not our fault. But they blame us and look at us as though we are lying.
Just to encourage you I have been to an Invalidity Benefit Review (before PIP) and they were very good at listening to my points. You do have to speak about how you are unable to do certain things according to the criteria for PIP (CAB have a link). Remember, to be marked as being able to do something, it has to be 'reliably, repeatedly and safely'. I found those words useful to use. Plus if you are not able to do something for 50% of the time over a week, that a normal healthy person can do, then you are marked as being unable to do it.
I found the Benefits and Work website helpful. You pay a small annual amount to subscribe. really helpful if you need to go to tribunal.
No as I have automatic right to both mobility snd care at higher rate nut....I have known Steve many many years from when he first statrtd and am a huge advocate of his information.
Yo get all the info you need it is best to join. I do know this was suggested to you a while ago.
It is not so much the conditions you have but how they affect you.
They explain how to make a claim in line with the regulation. Someone likened it to playing chess - you need to understand the rules. Ridiculous? Yes, but it is how the system woks. I have used Benefits and Work website. They don't actually do advocacy work directly for you, but they give you the information so that you can do that for yourself.
I found it helpful to understand better some of the wording. If they ask a question such as 'Can you wash your self?' and you say 'yes' but then want to explain actually you can but it is difficult leaves you in pain and you need to sit down for an hour to recover, then you should answer 'No' I can't wash myself, because what they need to know is that you cannot do it 'reliably, repeatidly and safely' in the same amount of time as a healthy person can do it.
The web site gives lots of examples of certain diseases and how to present the problems. The cost is not a lot if it helps you get the right benefits.
I have just been looking through the guide of claiming PIP and I took the test truthfully and it says that I should get 21 points on care and 10 points on mobility, I get 9 points on care and 0 points on mobility. It is disgusting, what do they go off to give you the points? They are not going to get away with it. I am not going to lose money because they are lying about what I said. ABSOLUTELY DISGUSTING!
The key to filling out PIP forms, and what Benefits and Works guides are so good at, is using the right language. It is definitely worth joining then you can download the full guide and it takes you step by step through every question and how to answer it.
And likewise, you can get as many statements from other people who know you as you can. When my son was younger on DLA, once he had the diagnosis there was no further involvement from medical professionals. So I included the diagnosis letters, then statements from his father, the mother of his best friend, the woman that came to clean the house, the leader of our home education group and so on.
He is now an adult on PIP and ESA and I do the same. I get people who know him to write about him. This time I will get some of his friends who he does online roleplay games with, because they have to let him take his turn first before he is too exhausted to play.
Thank you for your advice. I don't know anyone that can help me? I don't know anyone. The letters I do have from so called specialists won't even help me because most of them won't acknowledge that I have CRPS, even the printout from the hospital saying that I had broke my ankle and the pain that I am still in and that is proof but the doctor told me that I had not broke my ankle even though the Xray showed I had, so what hope do I have in getting a true right letter.
Oh no! That’s awful 😔 So sorry for you & the needless extra stress & anxiety. It all seems so arbitrary, it’s frightening!
If they could only live in our bodies for one day, it would be SO very different.
(I submitted my Review as demanded just before Christmas, so I'm waiting in fear of the result. They seem to have also conveniently forgotten that they extended my award until next October due to the pandemic!!! Clowns.)
As a general point ditto re Benefits & Work advice.
Aww thank you. I used to be so fit and active before my accident and then everything changed. I fell downstairs badly and broke my ankle, 4 years ago. It was never treated and never put in a cast and I was told to walk on it, because of the pain from my ankle I walked on my big toe I have developed arthritis which is so severe I have to have an operation, when I was told about this again they just left me for it to get worse and now they are dragging their feet to give me an operation or at least some pain relief that actually works.
Aww thank you for your advice, the problem is the letters I have had from the hospitals and GP are not good enough to send even though I am struggling the letters don't say that, even though I have told my specialists they add extra's in the letters not what I have told them. The problem with PIP is that it is not the condition people have it is how it effects someone. Which I think is so wrong.
I helped someone with PIP application a couple of years ago. They also didn’t have copious medical letters. I wrote a statement as a “friend” although I knew him as his manager. I wasn’t allowed by work to state our professional relationship. He also had his wife and daughter write statements explaining the day to day difficulties he had. These were submitted as part of mandatory appeal and subsequently he received PIP. What I’m trying to say is that not having medical information is not entirely detrimental to application.
I also agree that benefits and work information is very helpful. I also have used information from online CAB and found some helpful advice there.
I am due to have my PIP reviewed later this year and am dreading it. I am actually significantly worse than when had review 2.5 years ago, but am fully aware that doesn’t mean a great deal and it’s how the information is phrased.
Thank you Bevvy, I was worried about not having any evidence of my illnesses, that is a great idea to have written statements. I thought that they wouldn't take them because of being a friend, relative. It is awful when people get worse and they don't believe you.
Are you on friendly with the people who employed you? They could also write a statement. Basically anyone who will explain the difficulties you have can help. Also obviously it will be you that sends the statements to DWP so you can be sure they say what you need.
I didn't work for long only 6 weeks and they didn't know me that well. The only person who knows the difficulties that I have is my husband because he is my carer. I am seeing a specialist at my doctor's surgery on Monday so I will see if they will help me
Your husband can write a statement outlining the difficulties you have on daily as that is accepted as 'evidence'. I also wrote a diary outlining the difficulties I had in one day, such as having to sit down and rest for ten minutes after having a bath before getting dressed, the things which caused me pain, and I needed help with etc. If you think through one of your days and write down the things you need to do to manage, or not and that your husband does, then it gives them a clear picture.
I've done that and it was used as part of my 'evidence' at the first tribunal I had to attend (when applying for Invalidity Benefit - now PIP) and in an updated one for a later review when I transferred to PIP when they then added in mobility component.
it may be worth booking an appointment with the GP- even if it means a long wait to see if they wil do an updated letter. Other than that do you have friends who may be able to write on how this has affected you.?
I have CRPS in both legs and can relate in what you said about it getting worse over time. My PIP is currently now on both enhanced mobility and enhanced living.
Due to Covid lockdown I was sent my PIP renewal at the time when the restriction lifted in April 2022. At that time I was on basic daily and zero mobility which was fine for the state on my condition back in 2018 when it was initially awarded by tribunal.
6 months later I had not heard back from PIP, but they never stopped my money either. I was indeed delighted to establish that the DWP has a dedicated employed department within their offices to handle applications and to review their progress. I was able to get all the updates that I needed from them.
There was sadly a huge backlog which may still remain the case and it took 16 months until I had my review. I used the time wisely with fact gaining information and sought out occupational therapist's from both my local district council and from AGE UK (who someone heard about me and got in contact)
I then asked my GP to write a review based on my medical condition and the findings from the occupational therapists in how I am affected in my daily life, highlighting the difficulties I have and face as well as what is specifically needed to improve my situation. Then sent them to DWP and marking them as FAO PIP
After that I soon had my telephone review which was more of a tick the box exercise and being told that they are going to fully recommend me back to DWP for enhanced rates but also adding that the final decision is ultimately with the DWP.
Everything went through smoothly, im now able to get out n about on my mobility scooter. Sadly it arrived at the same time as the autumn and winter weather so roll on the Summer months.
I hope that you sail through your application, just remember to contact the right departments for updates and it may be worth trying to establish if there will be a delay (like mine)
I am so sorry for what you had to put up with at the beginning and now you rightly get what you should have had in the first place. I think benefit agencies try it on a bit to see what they can get away with. I am sick of complaining all the time for what is rightly mine to have. I didn't ask to be disabled and feel like an old person, old before my time. I am 56 years old but feel about 80 years old. The problem with my conditions are that because I no longer see anyone anymore the benefit agency thinks there is nothing wrong with me. Apart from being referred to a specialist hospital The Walton Centre in Liverpool, there is nothing else so they say that they can do for me. The pain specialist that I saw 4 years ago passed me to a hospital in Salford which was a complete waste of time, they wouldn't diagnose me with CRPS even though it is in my medical records, so they wouldn't help me. I went back 2 years later to the original pain specialist and he has passed me on to another hospital because he doesn't know what else to do for me. What hope do I have when the so called specialist's won't even help me?
No problem Imagine 1, I`m 45, my CRPS was caused by cancer back in 2014. Same as you I never asked to be disabled and yes I also feel like I'm 80. Everything I do is so slow, painful and exhausting, but you totally get that too.
The state of the system is entirely down to the the current government, were still being treated with Austerity measures whilst the rest of the country had that lifted around 2012. It sucks the way we are degraded and left to feel having to perform to multiple departments just so we can survive and try to improve our situations.
Fingers crossed, there is a new general election this year and I feel we all could all do with a change. A little empathy from the government would go a long way tbh. But I'm blowing off steam now lol sorry.
Thank you for your reply, we are exactly the same and think the same. Both Conservative and Labour are as bad as each other we need a new party in to help the North especially. We need someone like Nigel Farage back and the Reform party. Labour isn't the answer.
So sorry to hear of your situation, you have enough to deal with.
I witnessed a similar situation with a man with mental health and learning difficulties that I help in the community. He was stripped of his higher allowance by a phone call… it makes me so angry.
I appealed on his behalf and this was rejected.
I asked for the mandatory reconsideration and that too was rejected.
I was then told that the next step was to take it to court, so I asked them to do so as this man was not capable of looking after himself and cardiac failure prevented him walking the length of himself. I knew that he would qualify for legal aid therefore I wasn’t afraid to take matters to court.
The court threw the case out and ordered the DWP to reinstate all of his allowances. This was done in a matter of days.
I got the impression that the DWP were trying to save money and thought that people would not take matters as far as court proceedings therefore, they could reject appeals even though it is obvious that some people do need this help.
Some people abuse the disability benefits system which then casts doubt on genuine cases.
If you you can support your need for care and mobility, phone and ask to speak with a supervisor to explain the detrimental effects of losing your allowance.
Include any payments you make for physio, podiatrist, cleaner, window cleaner, anyone you pay to help with your condition or to do work that you once did yourself. These things help you stay in your own home so include any adaptations such as stair lifts, widening doorways or lowering cupboards…
I find it ludicrous that the word of your GP is not enough.
Don’t give up, if you’re entitled to it, persevere and take it all the way!
Aww thank you for your reply. It is shocking like you say that genuine cases are not being listened to and being refused. As I said in previous posts I used to be so fit and active before my accident, I used to play walking football for the over 50's and I loved it, I used to go to the gym 5 times a week, now I can't do anything and the way I am treated by the DWP is absolutely awful. The things that I said on the telephone wasn't even mentioned in the decision letter, so why ask in the first place if they are going to ignore me? If the same decision comes back then I will take it to tribunal. All this has come at a bad time, I am fighting another case with my autistic adult son who has had problems with a special needs school, very long story, so any more bad news I couldn't take at the moment.
I always use Benefits and Work when filling in my PIP review. Its a brilliant site. I have also had to go to tribunal, for me it was a scary experience but when i actually got in the room they had already decided to up my care component to higher rate before even seeing me. There were 3 people in the room, which was in a court building but not a court room. One of them was a ling term disabled person who understood the difficulties we face, the chair person and one other who i dont remember but they were very kind and considerate. It's the PIP assessment people who I don't like. Half of the ines i have seen haven't even heard of some of my conditions. How can they make an assessment if they don't even know the symptoms a condition may have in the first place. Anyway, Im getting side tracked, I would definitely appeal if the mandatory reconsideration doesn't go in your favour. Get you husband to write a letter telling them how much your condition has changed and how much he now has to do for you in comparison to before. If you have a friend or another relative who understands too get them to write one too. My sons and husband always write letters for me telling how much a i have changed since the last PIP review. I don't know how much notice they take of them but it cant hurt. Good luck.
Aww thank you for your reply. I have been to tribunal before and it was very daunting it was for a different benefit which I never got and the judges were horrible people, they didn't believe a word that I said. So it was an awful experience for me and it took months to get the appointment. I have just got a printout of my medical records and they mustn't have looked at them to give the decision. So I am sending them to see if they change their decision. I am not holding my breath.
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Over 65 no pip enhanment 
DLA/PIP at 65yrs old.
PIP: Assessments.
