The post about SSDI prompted me to mention this. Not sure if all UK ladies are aware, but you could be entitled to claim for PIP. I have a really pesky friend who kept going on at me to claim - I didn't at first because I've never claimed anything in my life - never had to as I've always worked - so it's a bit alien to me. However, I'm not rich by any means and did get to thinking about how the extra money could come in useful for lots of things and someone pointed out that there is the possibility that we might not get to draw as much pension as we otherwise would. I've worked since I was 15 and always paid my NI contributions so that's a very valid point.
Anyway, it's not means tested so you could be eligible regardless of how much you earn. I think it's just for people UNDER retirement age (anyone over retirement age should be looking into Attendance Allowance). There's a fast track option which is for terminally ill people - don't shoot the messenger - I HATE that word too and never class myself as that but it's the DWPs terminology not mine. The only questions asked when I phoned were about mobility and you're meant to answer yes, no or sometimes. Questions are something like can you walk 50 yards without struggling, can you walk 20 yards without struggling and do you need help planning a journey. I can plan a journey so no issues there but at first I said yes to the other two until I realised actually I get really breathless walking up even just a few steps so she advised me to say sometimes. Anyone with spine mets/lung or chest wall mets could probably have similar struggles I'm guessing??
The only other thing is for your GP to fill in a form - some will send it on direct but I had to collect mine and post it on myself which was fine. Decision is made within 2 weeks.
I will warn you though, i was asked if I was expected to live less than 6 months!! What a question to be asked eh. I was totally honest and because it was a bit awkward, I made it a bit jokey and just said something like "Well I certainly hope so love". She apologised for having to ask bless her but well, it's part of their job so what can you do.
Anyway, I'm just sharing - it might not be for everyone but it might just help someone .
Have a great weekend everyone.
xx Josie xx
Written by
Mindysooty
To view profiles and participate in discussions please or .
19 Replies
•
Thanks Josie
I didn’t realise any of that until you let me know.
I try and convince myself that I am normal, but I do have symptoms and side effects that cause me to readjust or rethink the things I do.
Even if there is some financial assistance for if/when I either have to reduce my work or stop. Or to help pay for treatments, supplements etc it would be a great help.
I applied over the phone, and received a letter today saying that they are looking at my information.
I didn’t have to get the form as they said my GP surgery would have it there.
Interesting. It is the same thing as SSDI in US,correct? Well, here all through out working years, we put into social security through our paychecks. They base it on the highest earning periods in 10 years. We have compassionate allowance which mean for an illness like ours, stage iv or pancreatic cancer, you are going to be automatically approved. But here in the US (wondering if it is the same where you are), even if approved there is a FIVE MONTH UNPAID WAITING PERIOD. That is what hurts people in the US. You have to have a lot of money to be able to not work and have no money coming in for five months. But when the nurse navigator at my second cancer center (was not happy with the first hospital or onco), filled out all the paperwork for me and gathered the requisite medical records. I had been going through all my own savings during the year and half before I switched oncos and cancer center. Best decision I made. I assumed that SSDI would go by the date on the application that the 2nd cancer center filed for me. I was in shock to learn that SSDI actually went back and used the first date I was told at the first hospital as the "onset of my disability." So they docked the first five months when I was out of work (no getting around that) and then they gave me $25,000 in back pay for those months I was not working and was entitled to SSDI benefits. I got my back pay before I even got my first benefit. That was a godsend bc I had used most of my savings. Does PIP work like that? Maybe since you did not file a claim, they may go back to the beginning when you were first diagnosed and were not working. 70% of people in US who apply get denied. But certain circumstances, like stage iv, pancreatic cancer and ALS get approved. All they needed was medical records showing I was stage iv. I was not working at the time I was diagnosed so I did not get any long term disability from a job, nor did I use an attorney. For many people who get ill, it's the only thing keeping them from being on the streets. People who get denied have to hire an attorney and appeal it and in NY, that could be months before you get a hearing. You worked, put into it, so you are entitled to it. Of course you cannot be working at all when you file. Good luck.
No its different. Its not means tested so doesnt matter if work or not. Also if successful its paid from date you phone to claim. With our diagnosis its gast tracked n I got dec in 2 weeks. Its for 3 years then to review.
PIP is a British benefit that's only available in the UK. It's not the same as Social Security that you get in America. I would suggest you contact your local Social Security office for further information.
Oh, well in US you have to be NOT working when you apply. Its for a disability so if you are applying and working then obviously they consider that you are not seriously disabled. And it is based on earnings and the highest over the past 10 years. For Moms who may have stopped working years ago they can get SSI which is alot less than SSDI but then they qualify for food stamp assistance and medicaid which is free medical and pays for everything. With SSDI, I assumed it was from the date the form was filed but no, they went back (SSDI) and determined I was actually disabled from the first day I was given the diagnosis (at which time I did not file but I was not working). They gave me, after docking me for the first five unpaid months, $25,000 in back pay and I was not taxed on it.
Hi Josie,
Thanks for posting this information. I've heard of PIP payments, but never thought I would be eligible, as I work. It sounds like it might be worth looking into. I'll have to mention it to my GP when I see her in a fortnight for my zoladex injection.
Yeah definitely Sophie. Theres 2 components - care and mobility so even if you dont have breathlessness or pain ie mobility issues, you may still get the care bit. Its just short of £600 a month for both so its worth looking into. X
That does sound interesting, Josie. If I got any extra money I would probably use it for my supplements and off-label drugs. I just wish I could get my GP to prescribe a few I have left on my list, in order to get them for free. But the thing is, I don't have any breathlessness or pain (apart from some mild aches and pains at times) and I can easily walk for miles. So I have a feeling I will be turned down as "not sick" enough.
but that would just be the mobility part of it - there's still the care bit and I wasn't asked anything about that - they just went on my diagnosis. Your GP has to fill a form in to verify your condition, and then send it off to DWP (well mine filled it in and asked me to send it off but that's fine). I would at least have a go Sophie because like you say, those off label drugs can be pricey and the supplements too. x
You're right, Josie. I've just never been the type of person to apply for something I wasn't entitled to. But I need to look into it. It's not like I am pretending to have a chronic condition. I have my diagnosis and a medical exemption certificate that proves that. I'm seeing my GP at the beginning of October, so will ask for a form.
Thanks again,
Sophie x
• in reply to
Hi Sophie. It’s worth applying for. When my patients apply for normal PIP they are advised to answer the questions as if it were a bad day. There are only 4 questions, and the responses are yes, no, sometimes - so nothing specific.
I think we all beat ourselves up too much. We are trying to hold down jobs, whilst juggling hospital visits and the effects of this disease. It’s there for people with a terminal illness, and that unfortunately is us. I might not see my pension, so if I can get any help now, I will gladly accept it.
Good luck with it.
Clare xx
• in reply to
Hi Clare,
I have thought about it and I will apply. I will talk to my GP about it when I see her in a fortnight and get the ball rolling. I suppose I should have done this when I was first diagnosed.
I just thought that because I work I would not be entitled to PIP. When I repatriated back in 2012 I was out of work for three months. I applied for Jobseeker's Allowance, but was turned down, as they took my husband's income into consideration. So that put me off a bit.
Thanks for the encouragement,
Sophie x
• in reply to
I know exactly what you mean. I know about PIP, but I had never heard of this Special Rules PIP.
My application is being processed as we speak. I’m like you, and sure I won’t get anything. I will let you know
Clare x
• in reply to
I hope your application is approved, Clare. If I remember rightly, I read about a man who was terminally ill and he was either refused PIP or had it cut. It is just a horrible thing to have to go through.
I hope it is beneficial to someone in the UK on here ...it says it (PIP) currently takes 3 months to process !!
I don’t think PIP would apply to me based on the criteria mentioned above , but I was recently able to start to draw one of my previous employer’s company pensions ( this one at min age 55 ) on grounds of severe ill heath (not classed as terminal) and was able to take a lump sum and a smaller monthly pension , which all helps ( especially since I can’t draw the state pension till 67 ! , despite having paid the maximum full contributions over the years !) . So good luck ! 🍀 And thanks for making others aware ! x
Hi, the "normal" PIP takes 3 months but if you do it via the special rules it's fast tracked. Mine was done within 2 weeks. The same friend mentioned the pensions thing to me too but I've just not got around to looking into it. Maybe I should. xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone on Avastin in UK
Palbociclib 
What treatment for brain Mets?
