Help with PIP: Hi, I am one of the many who... - Pain Concern

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Help with PIP

Kaz2055 profile image
28 Replies

Hi, I am one of the many who have been in receipt of DLA but I am waiting my medical in the next week for my claim for PIP. I am dreading this and the more I read the worse I get.

I have congenital and adult scoliosis along with the problems that come along with it. Because of being 'unable to walk without pain was how the dla was claimed, but I can walk but not without pain, my medication helps mainly morphine patches and zapain but according to what I have read I have no chance. I am worried sick, my dla enabled me to have a car to get around, the lease ran out in January but they have extended it while I wait for my pip result.

I use aids such as walking sticks, wheelchair occasionally, I have handles everywhere in the bathroom, I have a stairlift, I am also partially deaf, would it be better to hide my aids and help or not? I try so hard to manage things but will that go against me? Any advice would be greatly received. Oh I don't know if it counts I am aged 62.

Thanks in advance

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Kaz2055 profile image
Kaz2055
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28 Replies
tortoise123 profile image
tortoise123

Worrying about this will not help it's going to happen wether you worry or not just attend the meeting and answer the questions which you have already answered on the form and just tell them the truth, like other people have already said it's best to have someone with you in case of any discrepancies later. I myself got nothing from my pip after the interview but after asking for a mandatory reconsideration i got my car back and things are how they should be, just don't worry.

tannie profile image
tannie

Hi, the worst thing you can do is worry. I worried myself sick , but stuck to the truth and proved my point in the end.

OK I only got awarded standard rate instead of high rate I was on, but as my lady helper from carers resources said, the lines have been well and truly moved.

Just make sure you have somebody with you , do not overstretch yourself ,It is not hearing, eyesight or anything like that they take into account, but how far and well you can walk without stopping.

You must stress you are in pain at all times, I am good at hiding pain, this went against me ,

I bought myself a wee car and can get about now so Good luck

Jan101 profile image
Jan101

Morning Kaz2055

I know this is a very worrying time for you. I was exactly the same. It is very hard not to worry but I am going to try and help you to try and not worry as much. The day before my pip interview I call them up and said that I was really worried in case I was too ill and missed my appointment would it be possible for me to have a home visit and the gentleman said that he would call me back and he did in a couple of hours and said that they had a cancellation for the next morning at 9am would I take that one I said yes definitely. The lady came dead on 9am. She was really lovely and really helped me with everything. I could not have asked for anyone nicer. I got full rate and middle rate for life. So Kaz2055 it's not always bad. Maybe you should try and get a home visit and all your aides at home will really help you. Because the more they can see that you need them, then maybe they will see that you are really not very well. Try and call them and see if they will give you a home visit. Please try not to worry to much I know that it's not easy but it could make your health a lot worse. By the way did you read my post on slow releasing Dihydrocodeine for me it really has helped me with my pain in my spine. I take 90mg of slow releasing dihydrocodeine and 30mg together with paranormal in the morning and in the afternoon I take 30mg with 2 paracetamol and after my dinner I take one slow releasing Dihydrocodeine with 30mg of dihydrocodeine and 2 paracetamol and it helps tremendously with the pain. I only started 2 days ago and they have worked amazingly for me. Not sure if you're GP has tried you on this for your pain. Kaz I truly wish you all the best of luck for what ever you choose to do. But please try not to worry to much just for your health sake. You take good care of yourself my friend. Sending you warm hugs 🤗🤗xxx

Kaz2055 profile image
Kaz2055 in reply to Jan101

Thanks for all the advice, I am having my interview at home so perhaps that may help. My slack I was awarded was for life but I have read somewhere that pip is only awarded for 2 or 3 years and we have to reapply. I do hope not.

I think the biggest problem is we try not to let people know when we are in pain I feel I don't want to be thought as moaning all the time.

Thanks

Jan101 profile image
Jan101 in reply to Kaz2055

Hi Kaz2055 All I know is that my sister and myself have been awarded it for life. My sisters husband was only awarded it for three years and then he has to apply again. I truly wish you all the best and good luck for your interview. Take good care of yourself and please let us know how you get on. 🤗🤗🤗xxxx

Joanne1972 profile image
Joanne1972

I wouldn't hide your aids, especially if they have been recommended by a specialist, it shows you have been seen by one but I would say it's important to let them know what difficulties you have using them, do you get wrist pain using your walking stick, or do you keep dropping it due to numbness or shakiness or muscle spasm. The same thing with the wheelchair, does it make your back pain worse sitting in one position, do the bumps in pavements cause you more back pain, does it make you worse the next day....that kind of thing

I've just had my medical, the dr examiner was really friendly, polite in fact I'd swap him for my gp any day!

I also can walk but not without bad back pain due to scoliosis and was awarded higher rate than what I was on before

I'd say try not to worry but that easier said than done

Wishing you all the best

Joanne

makemepainfree profile image
makemepainfree

We all feel the same when that brown envelope pops through the letter box and best advise I got was tell them as it is on your worst day but don't say too them its just your worst day we all have diff problems and are diff day too day for what ever reason I don't know why it will be emotional and let that flow if it comes they may seem nice face too face but they are all watching every move I am not saying to lie but say it as it is aids help meds etc have a note of all that also ask for a copy of report that they are doing on you too be sent to your home address ps get every and reports you have had from hospital doctors or who ever photo copy them take them with if you had not already put in return envelope tell them how distressing all this is for you and may cause flare ups of all sorts of conditions I AM VERY ANGRY ABOUT IT ALL AS I WORKED FULLTIME FORE 30YEARS HARDLY A DAY OFF AND NOT MY FAULT IAM ILL AND CANT WORK NOW .WHAT THEY NEED TOO DO IS GET SOME OF THE ONES OFF BENIFIT AND OUT TOO WORK THAT HAVE NEVER WORKED A DAY IN THERE LIFE AS GOES FOR MOST OF THERE FAMILY RANT OVER sorry good luck too all pip claimants that are genuine

katieoxo60 profile image
katieoxo60

Hi Kaz2055, you are right about PIP not taking into account walking in pain. But the rules say it should be taken into account, it's the assessors who are ignoring the rules just like the old days when claiming DLA. Apart from that in your case you use aids. We need to educate the assessors that the rules do take into account things like breathing, pain ect. The rule actually says can walk that far, unaided in a normal manner, with out pain, ect or artificial aids or assistance. I can't even get out of bed on a bad days without pain no doubt you are the same.I have a stairlift ect too but get DLA and fortunately am over 65. I can't even lift a kettle safely or saucepan or use a knife. But that is OK I am just old, I think not, been like this for twenty years, don't let them fob you off and appeal or what ever if they refuse. Every Best Wish.

katieoxo60 profile image
katieoxo60

Just a postcript the rule is not about weather you can walk a certain distance or not, it is whether you can walk that distance normally with no problem like an able bodied person.

Blakejess profile image
Blakejess in reply to katieoxo60

Also about the time it takes

katieoxo60 profile image
katieoxo60 in reply to Blakejess

That too.

Blakejess profile image
Blakejess

They should look st previous evidence from the dla , depends some say they do some say they don't they have in s few cases I know . Google pip discriptord this will guide you u to as what they will ask. Definitely don't hide yr aids as. You get points for all the aids you use. Get a friend to take notes of yr medical. Go in yr wheel chair if need be. Yr not obliged to carry out any medical movement s I never have , I've never been well enough I've always been on to much pain. Think before u answer don't rush , and state I'll be asking for a copy of the report from the medical, remember most of these so called medical pusre trained to make assumptions and tell lies.

forgottenit profile image
forgottenit in reply to Blakejess

I finally got pip after being registered as disabled for 20 years last year. I went to medical not expecting to get it again and was very surprised ex hen the physio that was doing the medical actually listened. Have been told later from a friend that works in benefit agency that there is quotas that these folk have to fill, basically regect. So always ask for reconsideration or tribunal, and get help

Catmag profile image
Catmag

Hi,

I know it's worrying the change over to pip. My understanding is it's a points based award, so the more aids you need to help you move around, then the more points you can score. But I must say I don't know how they allocate points.

My best suggestions are: use your wheelchair when you go for the medical; always describe your worst days; always describe your worst pain levels and if possible have someone with you.

I wish you success with your appointment.

Take care, Catherine.

I am 68, I went for my PIP interview in my wheelchair full of painkillers and sedated to stop my panic attacks. My hubby went with me. When I got my results on Christmas Eve they had raised the care part but stopped my mobility component. I was foolish really, I did ask for a reconsideration but was rejected, I had been so stressed out after going I was ill for ages, now I wish I had appealed. The assessor blatantly lied about a number of things. I have ME, severe migraines, arthritis in my feet, ankle, knees and wrists and suffer from agrophobia, yet they said I could plan a route and be able to walk 50mtrs but no more than 200mtrs!!!! I walk round our home holding onto walls etc that's when I have the strength to get up out of bed. I wish you luck.

hill-top profile image
hill-top in reply to

The law says you can actually appeal up to 13 months from the date of original decision...they just don't tell you this implying you only have a month from the Mandatory Reconsideration decision . You need to have good reasons for late appeal but not of impossibly high standard e.g. you were ill, the whole experience made you worse, the DWP didn't say you could still appeal after a month following the reconsideration, you have only now taken specialist advice ( the helpline wrongly usually only talks about a one month deadline). It is not too late. if the DWP accepted ER Daily Living, state on the appeal form that you are restricting the appeal to mobility only.... but the appeal tribunal does, if it thinks the DL rate wrong , still have the right to look at DLiving as well. Remember that pain counts, you have to be able to walk to an acceptable standard, and cover the relevant distance as often as is reasonable, and there is the 50% rule such that the restricted distance has to apply at least 50% of the time. Appeals have a high rate of success. See if you can get free help from a local CAB, or other benefits advice provider. Recons generally result in a changed decision only with strong additional supporting medical evidence otherwise they just repeat what the assessor said. You will need supporting medical evidence in an appeal. CAB or whoever should be able to help with what you need a GP or consultant to confirm if the case. Seriously think of going of it.

jazzsinger profile image
jazzsinger in reply to

This is really sad. You should really apply again and ask for a home visit. You should definitely qualify for the mobility component. Even though you did not appeal you can report changes - ie worsening of condition. such as the stress you mentioned and being ill for ages. Basically you need to complete the form again and this time make sure that you fully describe your situation and emphasise how you feel on your worst day. Hope you get the additional support.

Blakejess profile image
Blakejess

It's hard but we need to fight these so call Health professionals that lie and make assumptions. The amount of reconsideration s and appeal s is at it most high ever, due to the lies these health care professionals are stating which in return is costing the government even more but there to stupid to see it. Also a big cost to taxs payers . People who work pay into the system tax stamp Ni , this is to pay us when we can't work yet we have to fight to get bck what we've put into this system. There are some fakers out there so I can understand there trying to fish then out. But sadly to many genuine people are loosing out . We all need to fight these people if we don't have the strength get some one to do it on are behalf. Don't let them win

Toplady profile image
Toplady

Hi Kaz2055

I just thought I'd post a reply as I had PIP awarded due to being unable to walk due to pain. I fractured my pelvis two years ago and whilst it has mended, it has left me with nerve damage which now causes me constant pain. I use crutches and a wheelchair to get around and am on similar medications to you. My advice is be completely honest about how the pain restricts you and how it affects you. It is a points based system so Google the points descriptors beforehand so that you know what the assessor will be asking. The critical point is "Can you do **** safely, to an acceptable standard, repeatedly and in a reasonable time period?"

This is the question on the forms which you have to answer yes or no to; if you can't "walk", "dress" "cook" to an acceptable standard etc then you must say "no" and explain why? I found it very useful to have a copy of the form with me with my copious answers so I could remember what I'd said originally.

I hope this helps, I was a bag of nerves too but it all went ok for me and I took delivery of my first Motability car last week which has already changed our lives so please don't stress too much, use the time to plan your answers so that you're ready for the day. Good luck.

Kaz2055 profile image
Kaz2055

Thanks for all the help and advice, it's good to be able to talk about our worries as a lot of 'normal' people dont always understand what it's like to e in pain. I have always had pain but that's normal to me but on the days I say I'm in pain it s that it is worse than normal. Sorry that does sound stupid but I know what I mean it's hard to explain.

I will post when I know what is happening, thanks again.

Ydontujustdie profile image
Ydontujustdie

It is harder to get PIP than DLA but having to have a wheelchair and various aids to do things proves that you have difficulty doing them. If you were given these by your local council ask if you can have a copy of the OT report that recommended them as this is good evidence. The asssessors can be nasty but I would hope that they would realise that your age and conditions make it unlikely that you could get a job and be honest in their assessment. Most people who have their cars and benefits taken away are still entitled to them but lose them because the assessors tell lies. Don't play things down with a stiff upper lip. Compare yourself to an athlete when describing the things you are unable to do and tell it like it is on the worst days when everything hurts and you have a cold. If they ask you to grip their finger point out that babies and dying men can grip a finger but that does not mean they can cook a dinner afterwards. Any bending or stretching they ask you to do, point out that you could not repeat it without the pain being too great and don't be stoic about anything , if it hurts at all say so and don't do it.

Remember that to get enough points for a car you must not be able to walk more than 20 meters repeatedly. That means even if your car is parked further away than that, you could not return to it for a while after you get in your house

With all the bad publicity they are getting I would hope they will be careful not to take liberties with you.

Finally make sure that somebody is with you, preferably an advice worker or if you can afford it get a lawyer .

Good luck and don't worry too much,

Ouchy39 profile image
Ouchy39

I can only wish you luck. I can't walk without pain my legs fall from under me and I'm generally in pain 24/7. The pip health nurse said I should definitely get some help but I have been declined and now waiting for the appeal. I heard they are not giving out to over 16, 000 claimants this year it's very depressing as I need that extra help for getting to appointments. I hope you are one of the few who gets it, all the best

398emb profile image
398emb

I am awaiting the PIP changeover notice, and every time a dreaded brown envelope arrives, I get a real feeling of dread, and often have to build up courage to open the letter. This time of year is especially bad - the April benefits change letters are as scary as a PIP letter, until opened! I have joined Benefits and Work, an internet organisation that gives advice on how to best present your evidence, and how to go about appealing, if necessary. It will also tell you what to expect at your medical, and this will at least prepare you for the event.

I wish you all the best, and I hope that you will not have any difficulties, but if you do, please don't give up hope. The appeals system is there to put right these "mistakes". However, if you have assistance from an advisor at appeal, you are much more likely to win, so contact your local CAB. If they can't help they may put you in touch with someone who can.

Cb1963 profile image
Cb1963

unfortunately pip is an attack on the weak and feeble,and this government is intent on preying on these frailties,whilst at the same time glorifying themselves to be good honest citizens who we should all admire,and collecting vast sums of money and having that golden handshake pension whilst stealing monies from the infirm and disabled,and throwing money to make bombs and bullets,funny how money is always available to big mod contact's and yet the budget for welfare is causing misery for people who rely on benefit payments to make you lead a reasonable way of life a little more comfortable and do the things that healthy people do on a day to day basis,what ever the outcome of your assessment and things don't according to plan,draw up some battle plans and get as much support from your local welfare unit,citizens advice,your GP,specialist's who you deal with you,the system is severely undermining the whole integrity of your own GP and any other health professionals that you might have to deal with,and if that's the case are we then guilty in asking for a referral to seek help within the NHS,there's a bigger picture here that this government has plans to weaken the benefit system and probably would be quite happily let the NHS sink,the sheer arrogance of these politicians is beyond belief,so I hope your assessment goes in your favour and sorry for going off in my own tangent

GillyGangGong profile image
GillyGangGong

I have adolescence scoliosis and adult scoliosis and am deaf amongst other things. my pip report came and it did take my pain into consideration. and I got standard daily living and enhanced mobility so it's not impossible.

Did you go on benefits and works site they helped me word my daily difficulties and pain better than I ever could. If you can hear with your hearing aids in you will get two points if you still can't hear properly you will get four +

Then Your aids will add up two at a time. Hope this helps I feel your pain scoliosis is sometimes unbearable xx

missgobby profile image
missgobby

Yes they do more checks on pip than they did on Dla roughly every 4yrs. I have read it some where on an official bulletin

Kaz2055 profile image
Kaz2055

Well as promised here is the update..... I have been worried for days, couldn't sleep at all last night, didn't help the angina but I digress, got all my bits of paper and such ready for the lady for my medical (well I presume it is a lady but may not be)

Was coming from the kitchen (half an hour to go) and noticed the phone flashing with a message phone CAPITA.

I phoned.... medical assessment cancelled person ill. They can't tell me when I will fitted in again but 'don't worry we don't want people to be stressed about this we will send you a letter'.

Don't stress! Cant believe this as no matter what people say I am stressed, most people I know have not been awarded the rate needed to keep their motability car although a friend got it back when she appealed (took few months tho) so am still in limbo.

Motability have extended my lease a few months while I wait.

makemepainfree profile image
makemepainfree

Sorry I was writing. A post too you and phone went can't remember what I was saying

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