How does volunteering affect my pip and esa?

nicdigby

Hello
I have stage four cancer. I have had lots of surgery which affects my walking ability and ability to do things like lift hot crockery out of the oven and to dress myself. I also have indefinite chemo every three weeks which affects my decision making, financial planning, mood, anxiety, depression and also causes fatigue, vomiting, dirrohea etc. This chemo won't ever end, it will just get more and more toxic.

This has been going on for a while (I am doing better than expected) and I have successfully claimed PIP and ESA using a DS1500 under the special rules (because people with my cancer can go from being ok to deterioating fast).

My condition has stabilised since the PIP form but I still have stage 4 cancer, still have the same chemo, still have more bad days than good and am still going to die within probably a couple of years tops.

But I am am doing ok....and I am so so so BORED. And depressed with it. Can't get a job as I could only manage very part time at best (one day a week)...and I would have to take one week out of every three off due to the chemo and then also other random days when I feel crap/surgery sites hurt too much/vomiting/fatigue kick in/scans and appointments due.

But because I am bored and depressed with it, the oncology counselling team have suggest I do some volunteering . I would like to volunteer at my child's school. Nothing energetic, just sorting sitting behind the cake stall and helping sell cakes. And writing down the amounts afterwards. This would be only on days when I felt up to it; they have enough volunteers to cover when I feel too poorly to do it and I don't have to attend every week.

Questions:

1) will this affect my PIP? I have claimed PIP on the points above (and more) eg that I struggle with financial calculations etc when woozy from chemo (I can't make any financial decisions for several days after chemo); could they say that I don't qualify anymore on those grounds because I am ok to handle cash on the school cake sale in between chemo rounds? Could they say that if I am ok to hand across a Victoria sponge to a buyer I am therefore look to cook ok at home and that therefore I don't qualify for that part of PIP anymore? Could they say that if I am sometimes ok to walk across the playground to do cake sale that I no longer qualify for the less than 50m rule? (sometimes I can do this now, but sometimes I can't. More often it's can't and I need a stick/crutches/someone's help).
2) will the PIP people say that if I am well enough to volunteer (average 0.5-1 hour per week) then I am not as sick as I said on the PIP form?
3) I have asked ESA about this. They didn't bother to reply.. Shall I just send them a form VOL1 or PW1?

It's points 1 and 2 I am most worried about ie my volunteer role possibly seen as contradicting my PIP claim.

Spoonie_Turtle

For PIP it's all about how you are for the *majority* (i.e. more than 50%) of the time. Is this cake stall a day or two in a week, or every day? If the former, no problem. If the latter, you might have a harder time convincing them, but that then depends on how long in the day it is. If it's no more than a couple of hours every day you should still be fine because that's not the majority of the time.

nicdigby

Oh no, it's only held twice a week for an hour. And I won't be able to manage that. I think I will be able to do on average half an hour to one hour per week over the course of a year.

Spoonie_Turtle

No problem for PIP then

I don't know what the rules are for ESA; I assume you'll have to inform them but again it's such a small amount of time they can't hold it against you in terms of capability for work. There was another thread somewhere around here about ESA and volunteering or work ... I can't remember though, sorry (brainfog).

calcotti

For ESA you need to tell DWP and complete a form PW1. https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/employment-and-support-allowance/while-youre-getting-esa/working-while-getting-esa/

You do not need to tell PIP. Incidentally, if you submitted a DS1500 and PIP was awarded under Special Rules they probably didn’t look at anything you wrote on a PIP2 form - you shouldn’t have had to complete this anyway.

nicdigby

Thanks Calcotti. I just double checked. I defo applied for ESA using a DS1500.

But I applied for PIP using the normal long-winded form; thinking back I think my DS1500 was signed a few days after I filled the whole long form out and I was in denial that I was terminally ill! I got the full enhanced award anyway, indefinitely. I guess stage 4 cancer isn't a diagnosis that can be reversed or improved hence the indefinite award even though it wasn't done using the DS1500?

Do you think there is any advantage to be had in me now re-applying for PIP, using the DS1500 form I have? As mentioned, my condition sometimes improves, but I am still pretty disabled in so many ways and the 50% rule mentioned mentioned above still means I would be awarded enhanced for both if I was re-assessed at any point. But would a DS1500-backed application give me any certainty that I don't already get?

calcotti

nicdigby wrote: »

Thanks Calcotti. I just double checked. I defo applied for ESA using a DS1500.

But I applied for PIP using the normal long-winded form; thinking back I think my DS1500 was signed a few days after I filled the whole long form out and I was in denial that I was terminally ill! I got the full enhanced award anyway, indefinitely. .....
Do you think there is any advantage to be had in me now re-applying for PIP, using the DS1500 form I have? As mentioned, my condition sometimes improves, but I am still pretty disabled in so many ways and the 50% rule mentioned mentioned above still means I would be awarded enhanced for both if I was re-assessed at any point. But would a DS1500-backed application give me any certainty that I don't already get?

No. An award of PIP under Special Rules is made for 3 years only. If you already have an indefinite award of Enhanced Rate both components then there is no point, in my opinion, now supplying the DS1500. If in the future your PIP is reviewed you can discuss with your medical team whether they think it appropriate to issue a new DS1500 at that time.

nicdigby

Ah I see, thanks very much, that’s really helpful.