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We want to hear from you: please tell us about your experience of the online community.

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

meandmine30

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

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Comments

Ami2301

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

meandmine30

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

poppy123456

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.

meandmine30

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?

markyboy

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

meandmine30

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!

markyboy

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

meandmine30

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?

Yadnad

meandmine30 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.

meandmine30

Yadnad said:

meandmine30 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?

poppy123456

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.

Liam_Alumni

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?

Yadnad

meandmine30 said:

Yadnad said:

meandmine30 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_Alumni

Hi @meandmine30. How are you doing? Applying for benefits, or even just thinking about applying can be daunting and a lot to take in