PIP assessment

OfficialRyan
OfficialRyan Member Posts: 4
Hello!

I haven't yet got my PIP assessment letter as I'm assuming there's a backlog. I was awarded the lifetime award of higher rate mobility due to my SJIA in my teens.

I'm wondering if there is anyone who can offer an insight into the PIP process? I'm currently in constant pain, but I am able to keep a job as a teacher where adaptations to my teaching and the school have been made. I've had a look at the criteria and I'm 90% certain that I should again be awarded the higher mobility component, but I'm unsure as to what to take note of and to say. On a good day, maybe 2 in a week, I am able to walk longer distances with very regular breaks, and on bad days this is severely impeded due to pain, swelling and reduced mobility in my joints. My arthritis is currently in the 'we've got you on something that seems to be working for some of your blood results but the disease is still active' category, and managed by high dose steroids and methotrexate too. I've got some social anxiety as it's difficult for me to walk when I am in that period, but also due to an incident pre Christmas. I've ordered a motability car for September but I'm beginning to panic about what my options would be should I not be successful in any of the claims!

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi ofiicialRyan & welcome to the Arthritis Care Forums. If you have any difficulty in using these forums, don't hesitate to get in touch.

    The web site has a detailed document of information regarding PIP which you may like to look at: https://www.arthritiscare.org.uk/what-is-arthritis/resources/652-personal-independence-payment-pip

    However, I'm sure the personal experiences of members who have experienced applying for PIP will be really helpful.

    I look forward to reading your posts on the forums.

    Best wishes
    Mod Bryn
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hello OfficialRyan and welcome from me, too.

    I had to smile when I read your 'we've got you on something that seems to be working for some of your blood results but the disease is still active'. Oh yes! I think all of us autoimmuners can recognise that category.

    Are the steroids just a temporary measure? They're not a great idea for long term use. I take methotrexate and hydroxychloroquine. Others on here are on triple therapy.

    I can't really help with the P.I.P. thing other than to refer you to the government's 'claimant journey' leaflet. http://tinyurl.com/ja3xuen . Also, many people enlist the help of C.A.B. in filling out their forms.

    I do know, having formerly had Motability cars, that you will need the higher rate allowance for the duration of the lease and that some people have had their Motability cars taken back so I'd make sure Motability are aware of your re-assessment.

    I ended up buying my last Motability car and my local garage were brilliant at taking it away and bringing it back for me when it needed a servicing or MOT. I'm sure they'd have lent me a courtesy car too but I needed adaptions so that wasn't possible. What I'm saying is that Motability might not be the only reliable option for you.

    Good luck with the whole, horrible process, anyway.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • OfficialRyan
    OfficialRyan Member Posts: 4
    edited 30. Nov -1, 00:00
    Hello OfficialRyan and welcome from me, too.

    I had to smile when I read your 'we've got you on something that seems to be working for some of your blood results but the disease is still active'. Oh yes! I think all of us autoimmuners can recognise that category.

    Are the steroids just a temporary measure? They're not a great idea for long term use. I take methotrexate and hydroxychloroquine. Others on here are on triple therapy.

    I can't really help with the P.I.P. thing other than to refer you to the government's 'claimant journey' leaflet. http://tinyurl.com/ja3xuen . Also, many people enlist the help of C.A.B. in filling out their forms.

    I do know, having formerly had Motability cars, that you will need the higher rate allowance for the duration of the lease and that some people have had their Motability cars taken back so I'd make sure Motability are aware of your re-assessment.

    I ended up buying my last Motability car and my local garage were brilliant at taking it away and bringing it back for me when it needed a servicing or MOT. I'm sure they'd have lent me a courtesy car too but I needed adaptions so that wasn't possible. What I'm saying is that Motability might not be the only reliable option for you.

    Good luck with the whole, horrible process, anyway.

    The steroids, unfortunately, aren't a short term measure. Started on them when first under investigation at 4, haven't got below 15mg ever since. It varies between 30/40 on a bad day and 15 on a good day. I'm not sure I'd like to add another DMARD to my regimen if I'm honest. I hate methotrexate with a passion, it makes me so nauseous. Try to inject me with it and I'll have a panic attack, so I'd not want to add anything else if I could help it! I'm on Tocilizumab which was originally designed for sJIA and as I've said, it is currently having some benefit with my bloods but it isn't controlling the arthritis as well as it used to or as well as we'd hope.

    I'm sure there are other schemes should it ever come to that, I just want to try everything in my power to make sure it doesn't! If that means enlisting the help of CAB then that might be a route to go down. A vacancy has arisen at the school/for the class I'm teaching, and I'm hoping to go all the way for it. Shortlisting is tomorrow! If I'm successful it will be a source of income should the unthinkable happen.

    Thank you for the links above, I'll have a look once I've got these reports looked at!
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Firstly, I want to wish you all the best in your job application. I do hope today goes well.

    Secondly, I'm astonished at the oral steroids. Presumably your rheumatologist has been prescribing them all these years and has directed you on how to take them but, to me, that's an awful lot of years on them and a worryingly fluctuating dose.

    How often do you take folic acid for your methotrexate? Many people on here have found that, by increasing it to every day except their meth day and also by taking the meth at night or by splitting into two doses (morning and night) they can avoid the worst of the nausea. (But check it out with your rheumatology team if planning to try any of this.)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • OfficialRyan
    OfficialRyan Member Posts: 4
    edited 30. Nov -1, 00:00
    I already take folic acid every day except Friday's and Saturdays as I have the methotrexate over a split dose.

    The steroids don't worry me if I'm honest. I was on a trial when I was younger for Cyclosporine in SJIA and the main paediatric arthritis specialist at the time pretty much said that by then, he wasn't convinced I'd ever come off them. I can have the odd day off, but if I start the steroids again the day after, I'll still find I flare with joint pain, swelling and temperatures. Just the disease I think!

    In other news, I got the job which is fantastic. I start properly in September but I'm doing long term supply there until July anyway, so looking forward to it! Got my notability car sorted as well so everything is alright at the moment!
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    That's great news about the job and the car. Well done!

    The steroids? I'm so sorry you appear to be so dependent on them. That's not such good news but you sound quite reconciled to it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bros
    bros Member Posts: 10
    edited 30. Nov -1, 00:00
    The steroids, unfortunately, aren't a short term measure. Started on them when first under investigation at 4, haven't got below 15mg ever since. It varies between 30/40 on a bad day and 15 on a good day.
    I am gobsmacked that you have been on such a high level of steroids (prednisilone I would image)
    I get slow release injections of the same steroid at 120ml per 3 month and even at that they are not keen to give me any more in fact they want to give me less.
    Without these steroids I just could not function.
    I have been warned though that these long term are not good for you.
    Good luck with the job etc
    Regards
    Bobby
  • b2syo
    b2syo Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi,
    I resently had my decision back from my claim to PIP. I was refused PIP despite being practically housebound for months with the flare up I had.
    I was refused the mobility component because I walked from the car park to the assessment centre (holding on to my boyfriend the entire time and hardly a long distance I'd like to add). I also said that on a good day (which I made clear was very rare) I could walk whilst in pain for about ten minutes slowly. The decision maker took this to mean that I could do this all the time.
    As for the living component. I was awarded 0 points for preparing meals because (I wish I was joking/exaggerating on this) I was "observed to sign a document without apparent difficulty". How scribbling your name on a piece of paper means you can cook is beyond me, but they recon if you can hold a pen you can hold anything.
    The fact that I was observed to be"well groomed, casually dressed, nourished" for my assessment was mentioned as a reason why I could not qualify. It was also stated that I was not "seen to be in pain" during the assessment despite the fact that I was and didn't broadcast it.
    My advice to you is, don't lie but be aware that the system is there to trap you. Tell them repeatedly how much pain your in during the assessment and have as much evidence from doctors/physios as possible. Don't go to the assessment alone and never let them do a test/examination that hurts you or that you normally can't do. Sorry for the long post, but I hope it helps.