General Discussion


PIP Assesment

I've got this tomorrow, deep joy! Has anyone else had one? Will they even know what our chemo does to your body? :x:


Hello @Polly 1 with regards the paperwork getting lost in the post, send it as ‘signed for’ that way you will know if they have received it (it just means a trip to the post office but it will set your mind at rest over the holiday period)
Best wishes :x::x:

Polly 1

Thanks @bettebette I think that's the best thing to do. At least I will have evidence they actually received it!


@Baxter2 It is actually possible to have the ‘special’ rules applied for a second time, it can just be renewed even if you’ve lived a lot longer.


Good to hear @Chris82

How do we proceed with that then? Do I need to ask my Oncologist or GP to complete the special form? I honestly can't remember how it worked first time but I do know the form was sent and I only had a short telephone discussion and that was it!

Karen 💚💜❤️💛💙


If you apply normally and give GP and oncologist as contacts they might provide it. But that’s less certain and and you have to fill out the whole form then. I would suggest asking your GP for a new DS1500 and seeing if they’ll just provide it to you or post it off. You can then just phone DWP and say you’re claiming under special rules. Then no more forms...


Thanks for this @Chris82

I'll call my GP and ask. So, do I do this for a review too? I claimed under special rules first time and it was straightforward, quick and done over the phone.


Yes, it’s basically the same procedure but they don’t seem to automatically put you on the special rules pathway again unless you say.

Quote from @Polly 1:
Hi @1234annie - how long did it take to hear back about your PIP re-assessment - or havnt you heard yet?

C was awarded just the basic daily living PIP for 3 years two years ago in 2016 so we have been expecting the dreaded brown envelope containing the reassessment form. It arrived yesterday and now I see we only have until 20th to complete it.

He is currently on palliative chemo including Cetuximab so just trying to decide how much info needs to go on the form and which letters I should copy and send. I hope it dosnt get lost in the Christmas post. @Polly 1

Just what I needed before Christmas 😩

I still haven't heard anything!! I had December's payment as usual so expect it to take ages to hear back!! :x:

Polly 1

Oh goodness still waiting @1234annie !
We only got the form at the weekend and they have to have it back by two weeks on Thursday so they dont give you very long to complete it. Then there dosnt seem to be the same rush to make a decision does there.
Better get on and fill it in. C wants to get it out of the way so he can forget about it for now


I have got my PIP assessment tomorrow, bloody hell :x::x::x:

Polly 1

Good luck @GD62


Good luck @GD62 :x::x:


Yes, don't expect anything to happen quickly. From posting the form it took ages to get an interview and as you know I've still not heard back. Good luck at @GD62


Hi @1234annie

Had my PIP, which was a very comprehensive review about all aspects of activities of daily living. But intrusive too, didn't like as we couldn't have somebody on their last legs painting the town red every night as if it were their last on the stated.

I think state provision is quite poor when you think about it, as you read about people being discharged with cancer on to the street. If I had not my own insurance and worked through my illness and continue to do so I would be on my arse.

I feel sorry for folk as there must be others who really struggle. :x::x::x:


What an awful time many of you are having getting your PIP,

I've obviously been very, very lucky as my Macmillan nurse completed mine without me knowing when I was first diagnosed as incurable. She then rang me to say she had done it was I happy for her to send it in? I said yes and about 3 weeks later I had a letter to say I had been awarded the full amount for living and mobility. No interview, phone call or anything.
I really can't imagine how awful it must be having to second guess how to word everything so that you get all the information down in the way they want it. Also going through the interview when your natural instinct is to be positive rather than emphasis all the negatives. :x::x::x::x::x:


That's good to hear @scruffysheep

I know the DS1500 can be signed by a nurse or Doctor. It sounds like the easiest route for stage 4 to have it signed, pop it in the post and be treated under 'special rules' as @chris has said. No more forms or dramas hopefully! The thought of having face to face assessment would fill me with dread!! I've asked my GP to sign another for this space!


P.s. @GD62 would you consider getting the form signed and applying the 'special rules'?

Polly 1

Even after 6+ years of chemotherapy treatments - originally 3 now stage 4 - bowel, liver and lung operations - and on palliative chemo (today's is treatment number 54 since diagnosis) with permanent peripheral neuropathy we still had to complete the 'normal' forms for PIP two years ago as neither the GP nor Oncologist felt they could sign the DS1500 form (good news medically)
Completing the first PIP application form ourselves two years ago was very hard (the Macmillan advisor told us not to bother as he wouldnt get anything) and the 90 min face to face assessment that eventually followed was really really stressful. Its hard having to go through every aspect of your life when having this illness wasnt exactly in the grand retirement plan!
The assessor wanted to know exactly what we did all day. I don't believe the assessor believed him when C said for part of each fortnight he was mainly asleep! He said some days he was fine and other days his energy runs out without warning. We had gone into great detail on the form how everything was affected by chemo what he could or couldnt do etc etc She asked what he did when awake but with low energy and when he said watched TV or DVDs if he hadn't much energy - she even wanted to know what he watched. When I said we sometimes caught the train to our nearest bigger town, had a coffee and cake and walked and sat by the river she said 'is that all'. I was so angry I said 'yes we do lead a boring life!'
He was awarded the lower rate of daily living for three years which was OK and enabled me to claim carers allowance which helps with the extra expense of being ill with cancer.
What annoyed me as well was that Macmillan wrote to us afterwards to say they were pleased they had been able to assist us to get the award when they had told us not to bother even trying!
Now two years on its time for the reassessment forms to be completed - I can feel the stress building now 😡
Apart from that obviously glad things are going well for C so far. So pleased to be able to have Cetuximab as it appears to be working well at the moment and fingers crossed it continues that way. It's just the admin side of things that annoy me.
Just back from chemo treatment number 54 (in total since 2013) now sitting feet up mug of tea, Elf on the DVD, lights twinkling on the Christmas tree - glad to be home.


I know this sounds counterintuitive @Polly 1 but go back and ask MacMillan to help - they took credit last time so why not, it might save you so much stress.
Enjoy the cuppa and the film 😊😉


Mmmm @Baxter2 my oncologist filled in a form after my last scan saying not on palliative care and not to have the DS1590. Had to fill in a letter on Monday to my registration board as a patient complained I would not do him a px for zopiclone and morphine, had never seen them before and refused it and told them to come in for a review being on since the summer. Tuesday the Spanish Inquisition in the form of the PIP assessor,,,,,,,,,,Ahhhhhhhhhhhh!!!, Wednesday writing letter to GP to get a letter regarding incontinence, more forms for GP for my private pension and more forms to fill in about my NHS pension. I feel poked, examined, and paper chasing and administratively fxxxxked............

LOLX positive healing :x:


Oh my goodness @GD62 isn't that interesting given the prognosis you were given initially? You must feel so upset and frustrated with all the hassle you seem to be getting from all directions!

You need a big change of luck!

Lots of love