I have been grappling with the dreaded PIP forms as Peter is being moved from DLA to PIP. They seem pretty unfair to me and the 20 metre rule for qualifying for enhanced mobility and therefore a Motability car is simply wrong!!
Anywhoooooooooo. I digress but feel better for venting my frustration with a system that assumes that all disability benefit claimants are frauds until they can prove otherwise.
The real reason I am posting is that I discovered a really helpful site that is a HUGE help when completing the forms. It guides you towards getting the best result and helps you include the things that the adjudicators are looking for so you get the most points you can. It explains the legal definitions and the members PIP guide talks you through each question and suggests things you should include that you may not have thought of. So good. I thought it might be useful to others too. Lots of free info but if you need specific help or help with appeals it pays to join (£19.95 a year).
Now if someone would only post a similarly helpful link for the US. It seems our insurance system is constructed to prevent common citizens from finding out the benchmarks required for receiving specific services. The US system reminds me of the classic comedy movie, The Pink Panther, in which Peter Sellers has ordered his male house servant to keep him ever vigilant and on his toes by perpetrating surprise attacks. We just never know when our insurance system will "pop out" and surprise us with cancelled services, etc.
If anyone from the UK has been through this process and has any input/advice, I would be very grateful to hear about it. Especially if it is positive. I've heard some real horror stories. We don't want to fib - seems morally and probably tactically wrong too as I am sure we would be found out at the face to face assessment. But equally I want to present the full (and very variable) picture.
I just realised that maybe an update might be helpful to anyone still going through the Personal Independence Payments (PIP) machine. Not much comment here but I know many people read without adding to the comments. Peter got awarded higher level care and mobility (the latter means that he can claim a motability car). Excellent outcome for us. It was a weird process and we were expecting all sorts of hassle, having heard many horror stories. However it was pretty plain sailing in the end. After me filling in reams of paper forms the PIP assessor came to do the necessary medical checks at home and went through the same questions as on the form. She clearly did not understand SCI (her background was in mental health). She didn't ask Peter to demonstrate his walking and declined on his behalf some of the standing part of the examination ("oh you wan't want to put yourself through that"). Weirdly he would have been able to manage the simple standing and knee bends! The award is for 10 years (most of them are for 1 or 2 years, even for progressive illnesses like MS or Parkinsons). She said that Peter is "unlikely to improve". Now this is nonsense as he is still improving (we told her this). As I say she didn't understand SCI. All brilliant for Peter. PIP money enables him to have some private therapy that the NHS won't supply. If you are still being assessed the key seems to be to answer honestly but remember to qualify your answers. For instance - "can you walk more than 20 metres?". If you answer "yes", you will automatically disqualify yourself. If you answer "indoors on a flat surface but not outdoors on an uneven surface and not in the morning or evening as I am too stiff and fatigued", you should get the right result. Sorry for wordy post but I spent ages trying to get this sort of info when we were going through the process and thought it might be helpful to others.
I really wish I had read this post before doing my PIp forms I was originally on DLA low rate care and mobility I have done a change of circumstance due to neck problems at same discs as your husband I also am awaiting epidural and decompression surgery due to impinged nerve affecting right hand and arm I did tick yes I can walk 20 metres but as u said no I can't do it first thing and definitely not on unlevel ground as it causes such pain in my neck I certainly can't do it without my pain meds either I am on morphine sulphate 60mg daily diazepam 6 mg daily oramorph six hourly and pregablin 600mg daily plus my antidepressants. when I turn I am turning my upper body if I turn to the right as no disrespect the pain it causes on turning my neck is real bad and it causes muscle spasms that are visible along with shooting pains across top of shoulder and down right arm, my daughter is currently helping me in and out of bath as I can't grip to get out of bath due to constant pins and needles and loss of feeling in right hand as for bending over the bath to wash hair well forget that I was led to believe that I don't qualify for stenosis reasons as it is manageable or DDD as it is genetic unsure on how correct this information is, I am worried they will now remove my dla totally and not award me PIP x
ri10973, It sounds like things might be a bit different for you as you are waiting an op that is intended to give you some relief from the stenosis symptoms. Peter already had the op and it didn't help him. However one of the questions is around how long you will need care and how long you will be unable to walk any distance. I think it may be 6 months (??) and I think you could possibly argue a case that you will need care etc for that length of time. It sounds like your care needs have increased recently and that you can do less physically? I am no expert - but if you look at the site I posted about originally you may find your answer. Here it is again: www.benefitsandwork.co.uk/personal-independence-payment-pip (Also I believe that Citizens Advice and Age Concern both have web pages dedicated to PIP). Can I suggest that you join forum on the site and ask your question? I think there may be a charge (it's a charity) but I asked many questions during the (long winded) process of form filling in and there are some very expert people answering the questions. It may be that you will need to appeal the decision (wasn't sure from your post where you are in the process). They have support available for anyone going through the appeal process. I wish you luck with the forms and the op. It's not a good time to have to go through this long winded fiddly mind blowing pernickity system. If can be of any help (though I stress I only know the system as it affected my husband) please PM me.
Also - should mention that expert medical evidence is really useful to support your claim. We asked Peter's physios to write detailed accounts of daily exercise routines which needed my assistance (counts towards care) and his doctors wrote about his symptoms and expected outcomes. With things like an incomplete SCI or stenosis it's really hard to get the whole picture accross - you can do a task one day and not another and forming a complete picture is difficult for them - so you need to give them lots of detail.
Hiya I have based it on my worst days as the form says at your worst on the info sheet well if that's the case I can't do a lot on the bad days as for the rest I have a letter put in telling them about my agoraphobia depression and anxiety and ptsd already which is why I was getting dla in the first place as for PIP I hope I don't get refused as if I do I lose the dla I already had and the appeal is a long process also if I am waiting for epidural/ surgery then even if they give it to me on a temporary basis to help me through I'd be ok with that tonne fair I don't want it forever but just to help me through a tight patch bit I guess we will see I also put the letter in from spinal diagnostics team about the damage and what and where and it says in that matter about spinal decompression surgery with epidural to help with pain in the meantime I also enclosed MRI report all my meds etc etc and it's a new application I mean on bad days my daughter is helping me dress as can't bend neck forwards or backwards to put a jumper on as the pain is so bad she also has to help me in and out of bath due to not being able to grip properly with right hand due to dead arm and constant pins and needles it says in drs letter about me dropping things my daughter even has to help me wash my hair as I can't bend over the bath tondonot even with handheld shower also my daughter is doing shopping as I can't drive or carry it, guess I will see how it goes if I need to appeal then I will but definitely on a bad day I can't walk 50 metres but if the pain meds have kicked in properly I may manage 50 metres but as u said on level ground uneven and rutty ground causes me pain also even climbing stairs to go to loo causes pain as for sleeping not a chance I was on sleeping pills before but dr told me not to take them with the morphine but coz I'm so tired feom lack of sleep I'm getting more emotional and depressed as I'm 44 and feel about 94 I cant lift anything from the floor without pain and I can't reach up to the cupboards as raging arms above head causes the muscle spasms xx I don't know where or who to turn too at the moment x
I'm so sorry to hear how badly affected you are ri10973,. Cervical stenosis impacts your life so much more than people realise. There is a really helpful Facebook group called Cervical Myelopathy Support Group whose members have lots of advice to offer on pain relief and info about treatments especially op outcomes and they also share MRI scans for comment/advice/interpretation. They are very supportive of each other. Lots of help on here but might also be worth a try for some very targeted support. It sounds like you are much worse than Peter was when they did his laminectomy. Of course he was much older than you at 63 when he had the op done. Your youth will help with post op recovery and outcomes. Why are you having to wait so long for an op? We live in Greater Manchester and the wait is (only???) about 3 months for routine and much faster if they consider it urgent. I think you mentioned an epidural in another thread but I thought that was just to relieve pain and doesn't help with the compression at all. Apologies if you have discussed this on another thread but is it due to trauma or degenerative? You should at least get a face to face PIP consultation from what you have said here. Please take a look at the site - it has a section on them and also tells you how to score more points. And as you will know - it's all about the points . Being ill is very expensive and although I know that we do not want people claiming PIP who are fakers it also means that many people miss out because they are just not good at filling out forms! Again - I wish you all the best luck.
"Personal Independence Payment (abbreviated to PIP and usually pronounced as one word) is a welfare benefit in the United Kingdom that is intended to help with the extra costs of living with a long-term health condition or a disability." wikipedia
i just thought I'd tag on to PIP with some positive. I am T10 walking. A little bit with a stick. I was reassessed for PIP 2 yrs ago- injured 2012 .. and nearly fell out my tree.. i expected fully to lose lower rate mobility as I was so tired with it all I thought. Hey. You now what. - stick your £20 per week. i work full time. Learnt to drive again - and soooo tired. Anyway they came to my house. i am lucky I work for a great company that lets me work from home some days. i answered the door- put my computer down and answered her questions. i think she was so shocked I was working full time- I almost felt she was trying to help me. i have been declined from my paralysis date any care element - yet this time- the assessor looked at me and said.. look do you use the 2 hand rails for getting up the stairs. I said yes- of course- I drag my foot and I use so much energy- you have no idea.. she said. Ok 2 points, do you use rails in the shower to get in out- I said yes. Etc... weeks later. I was awarded standard care .. couldn't believe it. why did I have to take nearly 6 years to get this? I have had such expense, had to buy an automatic car etc- insurance, tax etc. i think it really depends who you get , sadly for others. also my assessor was experienced with spinal cord injury. I fully expect To lose it when it is due for re-assessment. How sad is that. oh and the question that drives me nuts- can you walk more than 20 metres.... grrrr.. no not in the morning of at night or if I am ill or utterly worn out. How on earth can you explain that one to people! But yes if I only have to do it once or one longer walk in my day! Anyway- my assessor was brill - hope she returns. Laury
Hi laury44 , Glad you got an award. As you say, lots depends on who assesses you and how you answer the questions. Peter was assessed by a mental health nurse - !!!!! It actually worked in his favour as she took the text book - "no neurological improvement will happen after 2 years" literally. She said on her report that he would not get any better than he was. He is improving - very slowly - but it is improvement. He has his award for 10 years before re assessment based on her opinion that he will not improve. The extra money makes such a difference and enables him to have a weekly physio session that otherwise we could not afford. Did you not get an award for mobility? The question asked is: Question 14a How far can you walk taking into account any aids you use? Possible answers are: less than 20 metres between 20 and 50 metres between 50 and 200 metres 200 metres or more it varies
Citizens advice guidance to answering this is:
Base your answer on what distance you can manage most of the time (that is, on a regular and repeated basis) with or without an aid, such as a walking stick.
Don't overestimate your ability. For example, if you can't regularly and repeatedly walk 50 metres then don't say you can.
If pain and breathlessness affect how far you walk, take that into account.
You should probably tick "less than 20 metres" if you can't stand up or walk.
From the info in your post, you should probably get some part of the award for mobility. Maybe not enough to qualify for motabilty cars - but the lesser award maybe?
There is a lot of info on the Citizens advice web site on how to fill in PIP forms and how to frame your answers. Maybe appeal the mobility decision? Though I wouldn't blame you if you didn't want the stress surrounding it.
Sorry - I am beginning to lecture. It's just that I feel passionately about this. The government make it very difficult to get the financial help which people with disabilities need. It is a money saving exercise for them. But this approach is very short sighted I feel, as the money awarded for PIP (and ESA for working age people) enables purchasing power towards a healthier, safer and more fulfilling lifestyle. Healthier people need less medical/NHS input. By withholding it (making it difficult to successfully claim) the healthy living options and therapy are beyond the means of many disabled people. **Stands down from soapbox**
I had no problems migrating from DLA to PIP three years ago. They sent someone round for a face to face interview which was annoying after the details I went through on the form and all the evidence I sent with the form but she was very professional and I was awarded high care high mobility. I hope it goes well for you.
I think some of the issues are with how they view people who can walk a little. If you are a fulltime w/c user with no walking ability then it's fairly cut and dried. It's the idea of being able to walk a little that complicates things. They don't always understand how much variation there is with the abilities of someone with an incomplete injury. Nice to hear a positive story about it though catheterboy, I guess we always shout louder about things going wrong rather than things going right. Do you have a long term award? Or will it be reviewed?
Five years award . I don't think anyone gets a lifetime award any more. The annoying thing was I sent that much stuff with my form. I even sent photos of my catheter and spinal cord stimulator. I sent photos of my operation scars and receipts for disabled equipment . Loads of hosp letters and hospital discharge forms I left nothing out and feel it's just a waste of time. What's the point when they still send someone round to do a face to face.