Advice please if you don’t mind

[Tay100]

Hello lovely people, I hoping you can help advise me please. My friend told me that I should apply for something called PIP.

I’m stage 3c and found out few weeks ago that after a PET scan that it is now back in 3 lymph nodes. I’m seeing my consultant again in two weeks time to see if I need to start treatment yet. I still have some neuropathy in my hands and feet from my chemo18 months ago and I’m not at work.

My friend said this means I should be eligible, but I’ve read and seen in the news how difficult it is to be allowed it. Any ideas if I should apply or not or if I’m even eligible to. Thanks in advance xx

[Katmal-UK]

Hi PIP is not as 'easy' to get as DLA used to be because they changed the criteria. For instance when I was diagnosed and after chemo I was advised by the hospital to apply for DLA and was awarded higher rate mobility which entitled me to a car. This was due to the peripheral neuropathy in my feet. I actually rang them twice to say I didn't think I was entitled but apparently I was. After a couple of years I was awarded a lifetime award which means I didn't have to be assessed. Anyway..... PIP was brought in to replace DLA. I lost the higher rate mobility and subsequently the car. I could have appealed but given I didn't feel right about the decision to have it in the first place I didn't appeal. I do, however, qualify for lower rates of PIP. Apply, don't be put off by the form, just answer honestly. I had to attend an assessment when I went from DLA to PIP and that was fine, again just answer honestly when you are there. The 'award' is for a specific time but I'm asked if there are any changes to which I answer no and that's that, it just continues. The peripheral neuropathy has gotten as good as it's going to. It's not going away and neither is the cancer diagnosis etc. I'd apply, worst they can do is say no. If you need help with the form try asking Macmillan for assistance. Big Hug. Kathy xx

[Hidden in reply to Katmal-UK]

Good to see you are still giving excellent advice xx

[thomas62 in reply to Katmal-UK]

HI Kathy,

Lovely to see you took note of all the fab. support you have got from so many of our ladies on this site. Your support/advice is so welcome and appreciated. Best wishes. Gwen x

[Mumsie13 in reply to Katmal-UK]

I have neuropathy in hands and feet from paclitaxol. I didn't know I could be awarded anything. I shall have to see if I'm eligible. It all helps. Thanks again for posting some useful advice. Great to still "hear" your voice. 🤗Jackie x

[Eriksendi]

I was awarded pip after my initial diagnosis as I also had to have a stoma. Mine was reviewed and was taken away completely even though I still had a stoma, was awaiting further surgery, still had peripheral neuropathy. Basically as I managed to walk in, that was it! I think it very much depends on who assesses you, I don’t think it is done fairly it’s very hot and miss. I didn’t appeal at the time as I was too disgusted with the decision.

[Davonian]

Hi, As Kathy said, PIP was also suggested to me by the hospital. As I was classed as terminal I received the higher 'award' for both sections. 3 years has past and the award now reduced. I also have peripheral neuropathy and tinnitus along with other issues brought on from the chemo and the cancer.

I would also suggest Macmillan, Maggies and for me here in the SW, Force for guidance. The Ovacome team, which I'm so thankful for, along with the ladies from this group have a wealth of knowledge. I turn to it everytime I need it (and there's been many times). Its been the best! 👍🙂

Jaki xx

[Welshandproud]

As Davonian has suggested, try Maggie's. Their benefits advisors are brilliant and help you to fill in the forms and to help you to explain the things you find difficult. Sometimes these have become so commonplace that you don't even think about them any more. I felt very awkward asking for pip but Maggie really helped me and were brilliant when I got stressed out going through my symptoms. Good luck Tay100.

[Mumsie13]

I have neuropathy in my hands and feet, other nerve damage and a stoma. It makes me so awkward and clumsy. What people don't always realise is that it can also be painful, which you wouldn't think of with numbness. So it can be quite miserable at times but I am resigned to living with it. That said, I didn't know there there was an award or any kind of benefit so go for it and I hope you get an award that can help in some way. Jackie

[Tay100]

Thank you all so much for your help and support, I will contact Macmillian and see what they say. I don’t have a Maggie centre near me, I wish I did as from what I’ve heard they are very good. I don’t suppose I’ve anything to loose by trying for it either. Big hugs to you all xx

[Panther17]

I never knew about any of this. Nobody ever told me. Where and how do I apply? I live in N.Y.

[Tay100 in reply to Panther17]

Hi there, as far as I’m aware PIP,(personal independence plan) I think it’s only available in the UK. Hopefully there will be something similar for you in the US. Best wishes xx

[DouglasPouch]

I get PIP and it’s based on the doctor considering you may have less than 6 months to live. My application was done by the Palliative Care Team. Depending on your ‘stage’ you could ask for a referral to them as they are extremely helpful. Jane

[Shazwooly]

Please, please apply for it I have been having it for the last 2 1/2 years was diagnosed 3 years ago and just about to start 2nd line treatment. When they award it, it will last for 6 years plus it’s non means tested. I have the enhanced rate which allows you to apply for a blue badge and free tax on your vehicle. Good luck