PIP application with incurable cancer

BooJewels

I'm going to start a new thread here as a further discussion started in another thread, so that it doesn't hijack that OP's particular needs.  Alice had commented, so I'll quote her and reply here.

Alice_Holt said:

BooJewels said:

  We're just trying to do my husband's application and it's soul destroying.  He has incurable cancer and he's deteriorated significantly in a few weeks and yet, reading the guidance notes and descriptor details, it's very possible that he won't get anything, even the daily living component.  

  
 It's possible fatigue may come into it. If your husband does tire very easily - then this is the route to go. Explaining on almost every activity that due to the effects of cancer it takes him a long time to do the activity, he struggles to do it to an acceptable standard, he is easily exhausted and cannot repeat the task as needed. Tell them if there are points in the day when due to exhaustion he is unable to preform the activity (i,e that he cannot do that PIP activity at a particular part of the day even if he may wish / be required to do it - there is case law about this aspect of PIP). Repeat this on most of the activities - Preparing food, washing, dressing, budgeting, moving around etc

It is to be expected that your husband will suffer depression as a result of the prognosis. So put this in the form, and explain that he needs prompting with the PIP activities including - Engaging with people, budgeting, planning a journey, taking medication, preparing food, washing, dressing, budgeting, etc.  

 Because it is very emotionally difficult completing the form in those truly unfortunate circumstances, I would echo calcotti's suggestion that you do get help with the process. Even if you complete the form yourself, a Macmillan /  CAB adviser will be able to help you deal with any further issues around a PIP claim. 

Thank you for the ideas.  I think he has three main problems with his condition - [1] a tumour in his lower back causes significant pain (thankfully they've settled on a painkiller that's improved things now - he hadn't sat down for about 10 weeks), numbness down to his foot (he's now fallen a couple of times as he can't feel his right foot - nerve wracking when you've got bones like Swiss cheese and already nursing 3 fractures) and issues with impinged nerves through his bottom etc. as a result of it, [2] fatigue and he has been experiencing [3] confusion with high calcium levels and the bi-products of the cancer itself and treatment.  I was hoping that he might improve with his cognition after treatment, but I think they're trying to tell me that it won't necessarily happen - some days he's quite lucid and more his usual self and I feel optimistic, other days are very difficult and it's hard to reason with him or get him to understand instructions - this perhaps manifests itself most with medication and budgeting, both of which are alien concepts to him just now.

Macmillan did explain that fatigue is the factor that's most debilitating for cancer patients and perhaps the prevalent one with PIP claims and how it affects the claimant.  So I have been trying to include this in all the areas, but it sounds ridiculous when you write it down.  For example, he wanted to try and make a simple dinner for me one night (he always used to do most of the cooking) and I got on with some work upstairs in my office and wondered what I could smell burning - he'd put something in the oven and turned the timer on his phone, sat on the settee to watch TV for a bit, fell asleep and didn't hear the timer and I opened the oven to a tray of almost charcoal.  I suspect their response might be that if you might fall asleep, use the microwave instead - they say in the guidance notes that not being able to bend down to put things in the oven isn't a consideration, as you can still cook on the hob or microwave.  Which whilst true, also rather misses the point.

As I mentioned to Calcotti in the other thread, we are filling in the form as a draft first ourselves, then will go through it with the Macmillan Welfare Rights people on the phone, who have already been fabulous.  I might get to do that in the next couple of days, plus we have a report prepared by his Macmillan clinical nurse which she's done and he will collect when he's having treatment tomorrow.

Spoonie_Turtle

Have you seen the descriptors? Needing to use a microwave does earn points. However, is he always safe to use a microwave? Problems with cognition suggest that he might either cook something and forget about it (despite the beeping when it's finished, because if that doesn't register in a foggy brain then it's useless) or accidentally put the wrong time in, or cook it partway and forget about it needing the second cooking time (e.g. for a ready meal). Also, can he prepare the food to start with, or is he too mentally and/or physically fatigued to do that?

[Incidentally these are all points I need to include in my own application because I have fatigue and brain fog; if incidents like I mentioned with the microwave haven't happened to him yet, would they be likely to if he had to independently use a microwave to cook every day?]

I'm not sure if the guidance notes include the descriptors but if they don't, https://pipinfo.net/ is a good resource. Also https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/
I'm not sure which guidance you mean, if it's what comes with the form it's maybe not going to be as helpful as one would hope. This is the comprehensive official guidance - though if this is what you mean already then my apologies https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

Alice_Holt

I think what you have described should certainly get a PIP award. 
The thing to do is explain it in detail and fully on the form, don't worry about repeating yourself over the various PIP activities and form boxes, and enclose additional sheets as the boxes are small. Make it very clear the difficulties your husband now has with day-to-day tasks and the help he needs.
(Presumably had he been cooking himself a simple meal on the hob (per PIP assessment guidance), the effects would have been rather more dangerous).  

BooJewels

Spoonie_Turtle said:

Have you seen the descriptors? Needing to use a microwave does earn points. However, is he always safe to use a microwave? Problems with cognition suggest that he might either cook something and forget about it (despite the beeping when it's finished, because if that doesn't register in a foggy brain then it's useless) or accidentally put the wrong time in, or cook it partway and forget about it needing the second cooking time (e.g. for a ready meal). Also, can he prepare the food to start with, or is he too mentally and/or physically fatigued to do that?

[Incidentally these are all points I need to include in my own application because I have fatigue and brain fog; if incidents like I mentioned with the microwave haven't happened to him yet, would they be likely to if he had to independently use a microwave to cook every day?]

Thanks Spoonie - he's only been out of hospital for a couple of weeks, so we're still finding our way with the new version of him.  And, as perhaps with most people filling in a PIP, he has good and bad days. 

I desperately need to go elsewhere for a few days to deal with some other family issues that I abandoned when we both became ill in December (both got flu, it hit him much harder than me and brought his recent developments to light) and yet at the moment, I just daren't leave him to fend for himself - he hasn't been here on his own yet.  He seems to function fairly normally for a while, then do something really daft.  So he might well be okay, but he equally might set fire to something.  It's all new territory for us at the moment.  So the honest answer is that we just don't know and I'm not sure we're keen to find out either.

Thanks for the links to guidance notes, the one I was referring to was the last one, the PIP Assessment Guide Part 2.  But there was one in there I hadn't see, so I'll take a look - thank you.

calcotti

The PIP Assessment guide is the reference for assessors so is good to refer to however the information on the Citizens Advice website is, in my opinion, more user friendly and manageable

BooJewels

Alice_Holt said:

I think what you have described should certainly get a PIP award. 
The thing to do is explain it in detail and fully on the form, don't worry about repeating yourself over the various PIP activities and form boxes, and enclose additional sheets as the boxes are small. Make it very clear the difficulties your husband now has with day-to-day tasks and the help he needs.
(Presumably had he been cooking himself a simple meal on the hob (per PIP assessment guidance), the effects would have been rather more dangerous).  

Oh gosh - that's a horrible thought about the hob - as I just said above, we've not truly tested the situation yet, but I don't really want to find out.  He's making dinner at the moment with my supervision, but I'm listening carefully and watching the clock.

I did however just go down and find him in a flood of tears because he's getting upset about me doing this form (he seems to be unusually emotional over seemingly silly things) and the fact that he has to go through this process.  He points out that he's now paid 42 years of uninterrupted NI and tax and yet now he needs help, he has to jump through hoops trying to persuade a stranger who will probably never experience the horror of knowing they'll only live a couple of years longer that your life has turned to complete !!!! overnight and you could really use some support.  He has a point, it feels like you have to work very hard for it - or worse, that you have to play this silly game of trying to say just the right thing to be persuasive to score enough points. 

There's nothing he'd like better than actually to be well enough at some point in the future to return to work - he'd much rather prefer it and he did until December, right through the first phase of chemo - didn't miss a day - but that opportunity has now gone and he could use some support.    I hope you're right that he might get something from PIP.  And yes, there seems to be a lot of repetition in it.  He's having treatment all day tomorrow, so I'll have a quiet day on my own and will see if I can get to a near-finished state with the draft form to then go through it with Macmillan.

Incidentally, despite him having issues remembering words and what he's supposed to be doing, I was telling him about the kind assistance I've been getting here and asked if he remembered a nice Forestry Commission place we had a walk and lunch in when we went down to the Isle of Wight in about 2002 - and he said "oh yes, I remember, it had a woman's name . . . Alice Holt"  Funny how the mind works.

calcotti

BooJewels said:

Oh gosh - that's a horrible thought about the hob - as I just said above, we've not truly tested the situation yet, but I don't really want to find out.  He's making dinner at the moment with my supervision, but I'm listening carefully and watching the clock.

Needs supervision or assistance to prepare a simple meal = 4 points.

calcotti

BooJewels said:  He points out that he's now paid 42 years of uninterrupted NI and tax and yet now he needs help, he has to jump through hoops trying to persuade a stranger who will probably never experience the horror of knowing they'll only live a couple of years longer that your life has turned to complete !!!! overnight and you could really use some support.  

Has he claimed new style ESA which is not means tested and is based on NI contributions? See https://www.gov.uk/guidance/new-style-employment-and-support-allowance
He will not be able to claim this (yet) if he is getting Statutory Sick Pay.

Alice_Holt

"Incidentally, despite him having issues remembering words and what he's supposed to be doing, I was telling him about the kind assistance I've been getting here and asked if he remembered a nice Forestry Commission place we had a walk and lunch in when we went down to the Isle of Wight in about 2002 - and he said "oh yes, I remember, it had a woman's name . . . Alice Holt"  Funny how the mind works."

Yes, that's where my forum name comes from. Good spot by your husband!

In 2002 I was living next to Alice Holt Forecast, on nice evenings I would get the bike out and do the cycle trial or ride out to the Frensham Ponds  ( https://www.nationaltrust.org.uk/frensham-little-pond ).
Nice area, enjoyed my time living there.

BooJewels

Sorry, I can't be bothered to fathom out the code for multi-quoting, so this is the lazy way.
@calcotti:   "the information on the Citizens Advice website is, in my opinion, more user friendly and manageable"
~ and ~ "Has he claimed new style ESA which is not means tested and is based on NI contributions?"
~and ~  "Needs supervision or assistance to prepare a simple meal = 4 points."

Thank you - the CAB page was the one I mentioned that I hadn't seen, so I have it open to look through more carefully.  And yes, he has already claimed new style ESA - we managed that form when he had a couple of days at home between hospital stays and saw the Job Centre when he came back home, so that ball is already rolling, thank you.  He's not getting SSP, he was fired as soon as he couldn't turn in to work, so that was never an issue.

In respect of needing supervision - I do have one concern - if you over-egg the need for help with everyday tasks like cooking, is there a possibility that his ability to drive will be impacted?  It's odd, but whilst he seems to struggle with some things, he seems totally fine when driving.  He started with just going up the road, then a bit further and eased into it.  But I have no concerns over his ability to drive, he's actually his old self behind the wheel and his physical discomforts don't bother him for a while, not until the point when he'd want a rest anyway - we break everything up in to small parcels of activity anyway.  Like he'll drive to the shop, I'll go and do the shopping whilst he has a snooze, then he's good for the trip home.

We've spoken with his medics and they passed him fit to drive and yet also said he'd clearly taken a hit on cognition (from dangerously high calcium, even though he responded well to treatment) - which may or may not improve.  We had a bit of a leaky gutter issue that I couldn't fix on my own when he was in hospital, so asked if we could fix it together and he couldn't remember the right words and kept referring to it as the roof tube.

@Alice_Holt - I spotted your username as soon as I saw a comment from you some time ago and remembered visiting the forest - I was just curious as to whether my husband would remember it too.   He remembered that - but didn't remember to season the Yorkshire Pudding mix tonight  

calcotti

BooJewels said:

Sorry, I can't be bothered to fathom out the code for multi-quoting

Completely understandable - doing my head in too.

BooJewels said:

he was fired as soon as he couldn't turn in to work, 

Potentially illegal under disability discrimination if employer knew of the cancer diagnosis (everyone with a cancer diagnosis is legally treated as disabled under the Equality Act 2010) - but not what he wants to focus on now.

BooJewels said:

In respect of needing supervision - I do have one concern - if you over-egg the need for help with everyday tasks like cooking, is there a possibility that his ability to drive will be impacted? 

It’s not a case of ‘over-egging’. You have to try and convey how it is on the majority of days. Give examples where you can. For people living with fatigue this can be difficult to explain. So often people tell me they if they have an appointment, such as a PIP assessment, they make sure to take it easy for a couple of days before and then are exhausted for a couple of days after. Obviously whoever sees them at the appointment doesn’t see the before and after.
Even if he manages to cook a simple meal that doesn’t mean he can do it every time and if you don’t know when he can or can’t do things in advance that means he needs supervision all the time (even though help isn’t always needed).
Good luck to you both in this very difficult time.