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Do I tell PIP now, or wait until my appointment?

meandmine30meandmine30 Member Posts: 21 Connected
edited September 2018 in PIP, DLA and AA
Hi, i have spent a lot of time reading forums and haven't found anyone with similar issues as me. So have decided to join. 

I was diagnosed with psoriatic arthritis 8 years ago, I was very swollen for a long time until my meds started working, during this time told I have spondylitis in my spine and osteoarthritis in my knees. My consultant wanted me to have biological medication because she couldn't get my markers down but I was only 21 so I didn't was like it's fine don't worry about it! Then I met my husband and came off my medication (methotrexate) to have a baby, pregnant quickly. Then pretty much deterioidete really quick and I am 5"9 and was finally admitted to hospital (after being ignored by a&e and GPS) weighing 7st, I had extremely severe Crohn's, I was given 3 days to turn around before my bowel was removed, I was pumped with 100mg steroids 3 times a dsy, antibiotics, everything you can imagine, our daughter was then stillborn. I have since had 2 more children and Crohn's is getting under control because I gave in and now have the Humira, amongst other things!.

I had such bad muscle wastage from being malnurished for 5 months I could hardly move and now it's been 3 years I thought things would start improving but they haven't. I developed a lump on my spine, turned out to be fatty tissue, all normal but they have in doing the MRI found that I have something called syringomyelia, as it's rare I will give a small explanation, it's a cyst (called a syrinx) or multiple ones in my spinal cord. The symptoms being all my unexplained ones pretty much like burning hands and feet, weakness and stuff like that. One of the worst things is when I stand up I feel like I am walking on broken glass until I get going.

Sorry if I'm going on a bit! 

So I receive the standard rate pip for both, my husband had to stop work and went bankrupt because of all the hospital visits and became my carer. I was only told about this new issue like 2 days ago and have to wait for an appointment with neurology to find out more about it. Do I tell pip now or wait until I've seen neurology? We live half a mile from the nearest bus stop because we are in a very rural area and have nearly lost our car twice and I don't know how I'm going to manage if anything else happens to the car. 

What does everyone think I should do? What's the best way forward. I have had pip for 3 years now

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    Hi @meandmine30
    Welcome to the community! Firstly, I am terribly sorry for what you have been through but you have definitely come to the best place for support and advice. I've noticed Psoriatic Arthritis has been mentioned quite a bit lately as a few member of the community suffer with it too. Along with Spondylitis and Osteoarthritis too.

    Has anyone mentioned if physiotherapy would benefit you? To strengthen your muscles.

    As for PIP, I'm not sure therefore I can't advise, sorry. However another member of the community will be able to help you and will be along shortly.

    Please keep us updated and let us know if there is anything else we can do for you :)
    Disability Gamechanger - 2019
  • meandmine30meandmine30 Member Posts: 21 Connected
    Thank you for replying. There doesn't seem to be much known about my new syringomyelia discovery but the weakness is caused by it and some people think it's irreversible and others not. I had put it down to the arthritis but it doesn't seem to be that anymore. I guess I'll know more after seeing the neurologist, I've read this new finding of mine is a symptom of something so what that is I don't know yet
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,
    For PIP you must have had the condition for at least 3 months and expect it to last a further 9 months. If this is the case, then before reporting a change of circumstances then you need to take a look at all the PIP descriptors. See where you can gain more points if any, a new condition or worsening or condition doesn't mean you'll be awarded more PIP. Reporting a change of circumstance mean DWP will send you more forms to fill in and you will most likely need another assessment.

    Before doing any of this i'd advise you to get further advice from your local welfare tights, or other disability advice centre.  No one on an internet forum can advise you what to do because no one knows how your conditions affect you daily.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • meandmine30meandmine30 Member Posts: 21 Connected
    Yeh, I am more just asking if I should be contacting them to tell them now or wait until an official diagnosis? I wouldn't even know where to go to ask for help. I know last time I tried to get help at the start of the year from my local citizens advice they said they were so busy they were only seeing people who needed legal help. 

    It's a new condition that I thought was part of an old condition. Its been a surpirse discovery. One i never even knew existed. my first assessment was done and when my second I thought I was going to get stronger after I had my last baby but I have just gotten weaker and developed new concerns and it's been a year and now with this new diagnosis it will mean that I am not going to get stronger again. 

    It's just at which point do I tell them that I'm recieving a lot more support from my husband? At which point do I acknowledge the fact the deterioration is permanent? Will they stop my pip while they asses this new situation or am I better to just wait until after my appointment with neurology?

  • markyboymarkyboy Member Posts: 368 Pioneering
    You are missing the point PIP is not about diagnosis of conditions you need to look at the criteria and see where you are going to get more points if any
    If you are not confident that your new condition will get you enough points to get enhanced awards wait till your review
  • meandmine30meandmine30 Member Posts: 21 Connected
    But I read that if you just announce new stuff at your review they see you as a liar and have the attitude of why didn't you say when you first developed these issues? And have read of people being declined based on that.

     So you're saying it's not worth being up front? I don't have my next review for like 2 years. 

    I feel like people are missing my point! 
  • markyboymarkyboy Member Posts: 368 Pioneering
    They say report any change in circumstances but they do not mean you have to contact them every time you see a specialist or get a new diagnosis they only want to know if there is any change in your ability to carry out the PIP descriptors
  • meandmine30meandmine30 Member Posts: 21 Connected
    markyboy said:
    They say report any change in circumstances but they do not mean you have to contact them every time you see a specialist or get a new diagnosis they only want to know if there is any change in your ability to carry out the PIP descriptors
    Ok that makes sense! I feel like I filled my first post with too much info. So now my new question is at which point do you take the plunge and contact them to say you're condition has progressed in the descriptors? Sooner rather than later? Will they stop pip to assess? Or assess then do what they decide?
  • YadnadYadnad Posts: 2,856 Member

    Ok that makes sense! I feel like I filled my first post with too much info. So now my new question is at which point do you take the plunge and contact them to say you're condition has progressed in the descriptors? Sooner rather than later? Will they stop pip to assess? Or assess then do what they decide?
    Before you do anything get some advice from a Welfare Rights charity. You could be walking into a minefield of your own making by not taking professional advice.
  • meandmine30meandmine30 Member Posts: 21 Connected
    Yadnad said:

    Ok that makes sense! I feel like I filled my first post with too much info. So now my new question is at which point do you take the plunge and contact them to say you're condition has progressed in the descriptors? Sooner rather than later? Will they stop pip to assess? Or assess then do what they decide?
    Before you do anything get some advice from a Welfare Rights charity. You could be walking into a minefield of your own making by not taking professional advice.
    Where can I get advice?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You need to google what's in your area. As has been said PIP isn't about a diagnosis, ringing DWP everytime something changes would be we'd all be having new assessments at a ridiculous rate.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Hi @meandmine30,

    Your local Citizens Advice may be able to help you with this, but upon reading the above, it sounds like they're still a bit busy at the moment!

    @BenefitsTrainingCo, do you have any advice?
    Liam
  • YadnadYadnad Posts: 2,856 Member
    You need to google what's in your area. As has been said PIP isn't about a diagnosis, ringing DWP everytime something changes would be we'd all be having new assessments at a ridiculous rate.


    I agree but the advice given by the likes of the CAB is that if the claimant is unsure if the change should be notified then you should tell the DWP anyway.

    Claimants fail to advise the DWP of any change generally in the belief that it would trigger a face to face re-assessment and they could lose what award they already have - even if those changes could increase the award.


    This similar situation arose for those claiming Pension Credit whereas in the past generally most awardees were not obliged to notify any change to income. Since the DWP changed that the rules applying to Income Support now apply to Pension Credit.

    You are required now to report any change in income or capital (above £10,000)

    I used to notify the Pension Service every time there was a reduction in income due to more tax being deducted from my pensions, every time I saved part of my income and it took my savings above £10,000 or I had a reduction in' capital.

    On average there were at least three notifications a month of a change sent to them. These were mainly because of not spending my income in the period for which it was paid - in other words, putting money aside for a future bill or expense. This caused delays and suspensions of my award. In my case in a way I was relieved when they stopped my Pension Credit when my PIP ceased.

    In a way I would like to see how the DWP would cope if all claimants that had to notify a change of circumstances did so on a regular basis - be it for PIP or any other benefit - the system would grind to a halt.
  • YadnadYadnad Posts: 2,856 Member
    Yadnad said:


    Where can I get advice?
    As Mike has linked, have a look at the map of your area.
    I would warn you that in the main the map only tends to throw up the CAB and AgeUK.
    CAB is a hit or miss. It depends on the area and the staff. The advice can be poor or good and there is every chance that you might have to wait weeks before you see anybody.
    For AgeUK, this is for those over 50 and once again my experience is that they can give good or poor advice.


  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @meandmine30. How are you doing? Applying for benefits, or even just thinking about applying can be daunting and a lot to take in
    Scope

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