Personal Independence Payment - anyone had a successful claim?

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Hi all,

When I was first diagnosed with head and neck cancer I was advised by somebody at my local Maggie’s Centre to fill out a claim for Personal Independence Payment (PIP). I did so while I was undergoing my first chemotherapy back in November, and I have now been contacted by one of their representatives to ask me to have a video interview in a week’s time. The main problem, if you can call it that, is that I am now hopefully in recovery and not as ill or incapacitated as I was when I filled out the form. Does anyone know whether this means they will just refuse my payment? I’m assuming they will ask me whether I can do certain things such as walk a certain distance or cook for myself. Although I still get very fatigued I can pretty much do all of them now although I couldn’t when I filled in the form and I know a lot of folk are in a far worse situation than I am.

I’ve had a lot of expenses to do with my condition, such as the humidifier I had to buy, the amount we had to spend on diesel travelling 50 miles a day for 30 radiotherapy treatments and the £20-£30 per week I still have to spend on distilled water for the humidifier to stop me being sick with mucus. But I don’t know if the payment is designed for costs like this.

I’d appreciate any help or insights that anyone can give. Many thanks in advance.

Annie

  • I've not applied, but I did look at it as part of my research for an uncle who was very unwell.  I remember thinking that us H&N cancer patients almost certainly would not qualify as we can generally do most things better than their cut off limits.  That said I wonder how many people actually do succeed in getting PIP.  It seems so unfair. 

    As you know there are 2 elements to PIP - daily living and mobility - and they look at the longer term which generally for us does not apply.  Maybe the Maggies can help you prepare and know the write words to use to tip the balance in your favour.  Don't forget that if of pension age PIP is not applicable and you need to apply for attendance allowance which seems easier to get.  Best of luck.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Peter,

    Thanks for your reply. That’s what I thought, too, and I don’t think I’d have considered applying if the Maggie’s volunteer hadn’t encouraged me, saying I was entitled to it etc. If I knew what the payment was supposed to be for I guess I’d feel more prepared. I’m losing money through being off work but as it’s not means-tested I don’t think it’s that. Good tip to go back to Maggie’s - I think I’ll do that.

    Best wishes to you too.

    Annie

  • I danced through DLA and then PIP applications for years with my late wife, it's an absolute nightmare, particularly since PIP was introduced. The people that run these "medicals" are incentivised to turn people down, it's a complete disgrace. My wife's last award was refused (even though she'd been on it for 15/16 years) after a home visit by a "health care professional," wife became very upset and emotional at the questioning so the woman cut the visit short, then said to me as she left that she'd seen enough to reach a decision.

    We then got a decision detailing the meeting which had zero connection with what happened, it was pure fantasy; we went to the CAB who did a "mandatory reconsideration" application with us, which they said would 100% be turned down (because they all are), which it was. Ended up at a tribunal in a low key courtroom with a legal expert, a medical person and a benefits expert (all independent of the DWP) who in no time at all awarded her top rate in both mobility and living and were absolutely scathing about the decisions made. There was nobody present to represent the DWP.

    Still makes me so angry, vulnerable people being turned down all the time and many don't have a partner as stubborn as me to help them through the whole degrading process, so they accept the decision.

    Anyway, went off on one there, but bottom line is if you do try to get it don't try to do it on your own, get help every step of the way.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

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  • Hi Annie.

    Macmillan have a whole section on financial advice. Some of it might help

    FINANCIAL ADVICE

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Annie

    Some great advice from the others.

    I do know someone with cancer who was awarded PIP but hers was not head and neck and she was in palliative care.  She was fairly able when she was awarded it but did deteriorate over the months.  She was also given a lot of assistance to get it so I think that is key.

    Good luck and all the best with your continued recovery.

    Linda x

  • Hi Annie

    I am in recovery from head & neck cancer, treatment finished in May, was told I was all clear in August but since then lost loads of weight as I have trouble with taste and eating as do most, I can barely walk so now have a wheelchair if I do go out (mainly to hospital appointments), and in January this year I had a feeding rig inserted which is helping

    I applied for PIP last October and was awarded it in January.  It takes on average 14 weeks for PIP to come, but it is backdated. It is awarded to help with your personal care and to pay for any help to aid recovery

    I use mine to pay for my cleaner, carer 2hrs a day, physio which I am starting in March, acupuncture, reflexology and hypnotherapy, in fact anything to aid my recovery

    I would say take the interview, whilst you are feeling better you are still in recovery and not to full strength, explain your expenses too

    Best of luck

    Helen

  • That’s absolutely awful; I can’t believe you had to go through all that. I’ve heard terrible things about these companies; as you say it’s in their interests to refuse payments, even when disabilities are severe and life-limiting. I’ll do some more homework and see if I can get someone to accompany me. Thank you for sharing your story. 

  • Hi Helen, thanks so much for sharing your story. As you advise I’ll make notes of all my expenses. I’m lucky enough to be starting to eat a bit more normally but there has still been a lot of expenses, compounded by the fact I’ve been off work for so long now. 
    Best of luck in your recovery too and thank you.

  • Thank you, Linda, for your advice. I’m off to contact my Macmillan nurse to see if she can assist too. Best wishes.

  • Hi Dani, thanks for your advice and for the link. It says on the Macmillan website that you have to expect the problems to last at least 9 months. I expect my recovery to be at least that but I’m not sure if they’ll accept that as (hopefully) I won’t be severely affected for that long. But it’s worth a try I think! Best wishes.