I think I need to apply for PIP/DLA

Discussion in 'benefits and housing' started by SheilaNaGig, Aug 10, 2018.

  1. SheilaNaGig

    SheilaNaGig Struggling and striving

    So I had a double mastectomy last July, and then chemo over the winter. Last chemo was Jan 9th this year.

    I’ve just not been right since. I wake up in pain every day, I have to stretch and move about for about 20 minutes before I can get out of bed, and then I hobble about for a good half hour.

    I can’t change my bed linen without help, I have to go up and down stairs one at a timemost of the time. I can’t open jars. I work three hours for one afternoon a week and I can’t stand for the rest of the day. If I manage to be busy one day, I need to rest for the whole of the next day. Last night I dropped a bottle of water when I was trying to pour it out and it soaked my bed. This morning I dropped a hot mug of tea becasue my grip was so weak

    If I manage to cope and be a bit normal, for instance fro a social outing, it can take it out of me for several days afterwards.

    It’s not getting better. I’m weak all over. I need help getting up from being sat down. If I sit at my computer for more than about 20 minutes I have to lie down to recover for another 10 minutes. My hips hurts, my knees are weak, I’m breathless a lot of the time.

    I’ve spoken to two physiotherapists and my oncologist, who all say this is within normal parameters, and it could take another whole year to get back to something approaching normal.

    I’ve not received a penny in benefits, I’m living hand to mouth on the sufference and generosity of friends and family. I’ve put my house on the market. I can’t work. I mean, I can work a little bit but it’s has to be at my own pace with no deadlines. I had to hand back some proofreading because I’m just not able to meet the deadline.

    I’ve got a phone appointment with the GP this afternoon. It suddenly occured to me while I was showering this morning (and struggling to stand up and wash my feet and so forth) that I am disabled. I mean, I am not able.

    I’ve always been strong and healthy, my stamina has always been good. So all this is not only frustrating and upsetting but also quite a shocker.

    Does this sound like I could be eligible for some kind of PIP?

    If there’s a gap in my stamp, will I be able to get PIP?
  2. weepiper

    weepiper Jock under the bed

    Oh bless you, yes you should definitely get PIP and maybe ESA too, and a blue badge if you drive or have someone who drives you regularly. PIP isn't means tested, it just depends on your disability. Someone else more knowledgeable than me will be along presently, I am about to help my partner apply for PIP but we're at the very beginning of the road with it ourselves.
  3. Dan U

    Dan U Boompty

    Ask your GP if he/she thinks it is worth making a referral for support from social services - either with some calls from a domiciliary care worker to support your daily living tasks or from an OT to look at any adaptions that could help you with you with maximizing your Independence and recovery.

    good luck with your recovery regardless :)
    SheilaNaGig and MadeInBedlam like this.
  4. SheilaNaGig

    SheilaNaGig Struggling and striving

    I know things have been really tough for you and your family weepiper . I hope things are starting to improve for you all.

    I have to say, I’ve been really quite shocked by how difficult, tricky, and longwinded it is to access any help.

    As some may recall, I also had to call in help from Women’s Aid a year or so ago, and that was also prohibitively difficult.

    There are endless leaflets and pamphlets and websites about what might be available, but then even the stuff you’re eligible for is hard to access without jumping through so many hoops that they form a long dark tunnel. And the form filling! Ye gods! And all this has to be done by the person who’s actually in need, and sometimes fear and distress too.

    What happened to our welfare state? :(

    ETA. that’s a rhetorical question, btw.
  5. SheilaNaGig

    SheilaNaGig Struggling and striving

    Would that include chores like cleaning the floors? The household chores seem to take up so much of my energy and time, if I stay on top of them there’s no time or energy for anything else. But if I don’t do them the house becomes so cluttered and mucky it makes me miserable, and makes it more difficult to achieve anything constructive.

    Last night I was trying to get something out of the freezer (which is under the main fridge) and I ended up having to sit in the floor and recline against a wall in order to do it, and then had to slide over to somewhere else so I could haul myself to my feet again.

    I’m feeling quite weepy now, putting it down and acknowledging to myself that it’s got this bad. I keep trying to push through it, but of course that makes it all worse.

    As for adaptions: I’m receiving massage and osteopathy treatments for free from friends, and acupuncture and therapy at very reduced cost. I’m doing as much yoga and so forth and I can manage. I’m careful about my posture, I eat well and rest when I can. Is there anything further an OT could suggest?

    I could do with a better mattress, I think, and the chair I sit in at my desk is no good. But all that takes money.

    I had a free sample of CBD oil and my sleep was much more restful, but it’s cripplingly expensive.
    Last edited: Aug 10, 2018
  6. clicker

    clicker nanook rubs it....

    Try and get a macmillan bod to fill out your pip form, or if you are near the Guys New Cancer Centre they have the Dimbleby suite on the ground floor and they can also help with form filling. You definitely stand a better chance of a successful pip claim that way, notoriously it is not awarded on initial application...but is then awarded on appeal. But a well filled out form could alleviate you having to go through the appeal process. Photocopy all hosp, gp and histology letters you have and if you haven't got all of them request copies asap. You have waited long enough already to claim probably hoping for improvement, neuropathy is a common chemo after effect and totally debilitating in everyday life. You need the additional help and are fwiw I think more than entitled to it, feeling crap with recovery often means ironically people don't physically have the energy to even begin to tackle a pip claim. Good luck with it now and Google ' cancer map 'I think it's called and it'll tell you all support available by your postcode.
    Cancer Care Map | A UK Wide Directory Of Cancer Care Services
    You can also access a whole range of free complementary treatments , details on above site.
    Dimbleby Cancer Care | #makinglifebetter for people living with cancer
    The Dimbleby suite has a drop in one stop service at Guys, so a face to face chat which could save accessing help in a very unjoined up way with multiple organizations.
    Last edited: Aug 10, 2018
  7. Dan U

    Dan U Boompty

    These are all things to speak to the GP about particularly the chair and the mattress.

    An OT might be able to help with rails on the stairs to help your get up and down etc.
    SheilaNaGig likes this.
  8. SheilaNaGig

    SheilaNaGig Struggling and striving

    I’ve spoken with the GP. Feels like I’m being fobbed off.

    She said I should phone my local benefits office to fill the form in over the phone, but clicker you’re saying it’s better to get it filled in with someone who knows how to deal with the system from a real wo4kd perspective...?
  9. purenarcotic

    purenarcotic Conveniently Pocket Sized

    Yes you would be eligible to apply for these benefits - you can either apply yourself or with support. It might be easier to do it with some support if you’ve never been through the system like this before. Macmillan / CAB can help with this.

    There’s a very good website called benefits and work which gives extensive guidance on how to apply, what to expect at medicals etc. You have to pay for access to some stuff but some is free.
    scifisam likes this.
  10. clicker

    clicker nanook rubs it....

    Definitely get a cancer support worker to fill in the form with you. A bod from the dwp will have no experience ( unless personal and the chances are slim) of how having had chemo impacts on everyday life. The CAB are likely to be more effective than the DWP, but someone who's specialism is cancer and chemo trumps both hands down. They know the terminology needed, they will think of issues that you will even struggle to articulate possibly due to 'chemo brain'...please try and access their help.
    You can pick up the form from your local benefit office, or phone pip helpline and ask them to post one. It will be date stamped the day you collect it or get it posted to you. You then have I think 4/6 weeks to get it back to pip office. It will be backdated to the date stamp.

    [​IMG]The Dimbleby Cancer Care Information and Support Centres at Guy’s and St Thomas’ Hospitals in London offer:

    • complementary therapies
    • psychological support
    • benefits advice
    • information about cancer
    • cancer-specific support groups
    For enquiries & appointments:
    020 7188 5918 or e-mail dimblebycancercare@gstt.nhs.uk

    [​IMG]The Dimbleby Cancer Care Research Fund is one of the UK’s major providers of grants for research into the support and care needs of people affected by cancer.

    Dimbleby Cancer Care endowed the Richard Dimbleby Chair of Cancer Research at King’s College London. The current incumbent, Professor Tony Ng, uses tissue imaging techniques to identify the most effective drug treatments for each individual patient.

    FUNDRAISING Help us make life better for people living with cancer
    Would you like to get involved in fundraising for Dimbleby Cancer Care? If so, do get in touch. Whether you have your own place already in an event like the Great South Run or the Bupa London 10k, or you’d like to get involved in Every Day In May or our 50km summer walk, we’ll support you every step of the way. Click here for more information.


    If you are interested in taking part in a fundraising event for Dimbleby Cancer Care please emailfundraising@dimblebycancercare.org


    Eta I have cocked up the copy and paste ...but the first bit is the relevant bit.
    Last edited: Aug 10, 2018
  11. weltweit

    weltweit Well-Known Member

    Hi SheilaNaGig - I don't know enough to offer assistance, but I do recall applying for JSA and HB when I was fully Hail & Hearty and that was a pain enough even then. I hope you can get some help to claim the benefit but also hope that you experience some improvement sooner rather than later.
    SheilaNaGig likes this.
  12. iona

    iona makes George Orwell look like a dalek

    You can read the PIP descriptors (how many points you'd get for how your condition affects your ability to do each of the things they look at) here. If you scroll down it also gives a bit more info about how it works with variable conditions and explains about how you need to be able to do something reliably ("safely, to an acceptable standard, repeatedly and in a reasonable time") to be considered able to do it.

    Looking through that and seeing what you think you should score can be helpful if you're planning on claiming.
    weepiper likes this.
  13. iona

    iona makes George Orwell look like a dalek

    This thread is brilliant for support and advice around all aspects of sickness & disability benefits (ESA, PIP etc) from the initial application to the form filling and assessment appointment and beyond.

    There's some good online resources for filling in the form and assessment apt advice—any local or national orgs/charities to do with your specific condition may also have tailored advice for completing the form on their website, or they may be able to help you fill in the form in person and/or attend the assessment apt with you.

    Definitely get someone to both help you fill in the form and accompany you to the assessment if you possibly can, ideally someone knowledgeable about both benefits and your particular illness or disability (eg benefits worker from a cancer org in your case Sheila)
    Last edited: Aug 10, 2018
    scifisam and Puddy_Tat like this.
  14. iona

    iona makes George Orwell look like a dalek

    I put together this list of resources for work. (We're a small charity run almost entirely by volunteers and benefits advice isn't really our thing, but we do end up supporting people through claims.)

    It's not as good as getting personalised advice from a good benefits worker, but I'll share it in case anyone finds it useful as a starting point at least. (It's still kind of a work-in-progress tbh.)
    scifisam likes this.
  15. Puddy_Tat

    Puddy_Tat meh

    agree with much of what's been posted.

    be aware that the system is not there to help people get the benefits they need, the system is there to deny people benefits by any means possible, and default position is to reject the initial claim, knowing that some people will either not be able to face the appeal process, or will drop dead before they get that far.

    is very important.

    if your answer to "can you do X?" is "yes, but only on a very good day and then with difficulty", then all they will listen to / record you as saying is "yes" - it's by no means unknown for the 'assessor' to at least put a spin on answers so as to deny benefits.

    Also, the assessment is on for the whole time you are in / within sight of CCTV of the place you go to - and if the receptionist asks how you are and you do the english thing and say you're fine, this may well be reported.

    Getting yourself to the assessment on time, in presentable condition and on your own will also be taken as evidence you're fit for work. (obviously not getting there because you're ill, or not getting to the room the assessment it's in because it's up stairs and you can't manage stairs will be held against you)

    Suggestions are that taking someone with you - especially if part of your case is that you need assistance - does help. It also makes them less likely to lie about what you have said.

    And it's worth keeping a photocopy of what forms you've filled in - it's not unknown for DWP to lose the lot, or for it all to drag out for some time.
  16. iona

    iona makes George Orwell look like a dalek

    Yeah, definitely photocopy any completed forms before you send them off AND always post anything to do with benefits by recorded delivery if you can possibly afford to.
  17. Edie

    Edie Well-Known Member

    God SheilaNaGig I don’t know you but sounds like you’ve had an absolutely shitty year :(

    Good luck with getting some help.

    Out of interest, and certainly no need to answer on this thread as I know it’s not about that, but what was your experience like with women’s aid? Xx
  18. SheilaNaGig

    SheilaNaGig Struggling and striving

    This is all good and useful information, thank you all.

    I had an appointment with my GP yesterday. Well, not my own GP, who is on maternity leave but another, who is young and eager, but I left feeling really unheard and unsupported. She offered me antidepressants. When I demurred, she pressed me, so I said “okay sure”. Meaning that I’d take the prescription and not fill it. She then got caught up trying to get me to explain why I don’t want them. That took up about ten minutes of a twenty minute appointment.

    She didn’t ask me anything about my symptoms. She didn’t even run through my notes with me, which is the very least I do have expected from a GP who’s never met me before, and who may have to advocate for me.

    I expected her to test my grip and reflexes. I expected her to ask me to tell her about my mobility and pain. I expected her to ask about sleep, energy, diet, mood. She didn’t even ask me about my recovery from major surgery, nor what I’m actually experiencing.

    She asked me twice about who I’d seen at the hospital, and whether or not I’m following their advice. But not what that advice was.

    She told me she wouldn’t be contacted by the DWP, that PIP is allocated solely in the say so of the patient.

    Once I was home I realised that she not mentioned my recent diagnosis of osteopaenia, and that this was something I’d had flagged up in my own head for discussion. So I emailed the surgery with a brief message asking if someone could confirm it was on my notes.

    This morning I got an email frame the GP I saw:

    Dear Sheila,
    I can confirm that osteopenia is on your records following on from your Dexa scan in June.

    Perhaps if you could make a note of the activities of daily living that you find difficult and drop it in to us over the next few weeks? This would be helpful for us when DWP request further information from the GP practice.


    Dr C..T..
    GP Locum

    So I wrote back:

    Dear Dr T..

    Thank you for getting back to me so swiftly. I'm reassured to know that my osteopaenia Dx is on my notes.

    I must say that I’m a little taken aback that you want me to outline my physical Sx and mobility issues in a letter, because I had assumed that this would be investigated during yesterday’s consultation. I also assumed that my reflexes and grip would be checked, that my weight and Bp would be checked, I’d be asked some questions about the results of the surgery, and perhaps some other basic checks.

    I checked with you during our telephone appointment and again yesterday whether or not you’d be expected to provide some kind of supporting evidence by the DWP when I make my application, and you twice assured me that PIP is allocated solely on the information provided by the applicant. I am therefore a little nonplussed by this request for written information from me, that can be used when/if the DWP request further information from my GP.

    Having checked the literature available online, my understanding is that while the DWP will not necessarily contact the GP, it is prudent for the applicant to have spoken with the GP about the details of the problem in preparation for that possibility. I don’t feel that this has happened in my case.

    I’m willing and able to provide written information, but it seems to me that this will be exactly the same information that I’ll be giving to the DWP myself. It worries me that there will be no independent corroboration of my problems. I can provide the symptoms, but I really thought my GP would back this up with some clinical signs and an objective report.

    I don’t mean to be a difficult patient, but I am sorely aware of how obstructive the welfare system is these days, and I am feeling so thwarted and so beaten down that I feel it necessary to ensure I make the best possible case for myself as early as possible in the process.

    You ask me to drop some notes in to the surgery. Do you need hard notes, or can I email you with a written report? Alternatively, I’m willing to attend another consultation, if you think that would be useful.

    With best wishes
  19. SheilaNaGig

    SheilaNaGig Struggling and striving


    The help I got from Woman’s Aid was patchy.

    In the end, they couldn’t do anything to help. I felt like I was being rescued from a small cliff ledge in a high wind, with a rope passed down to me that I had to tie around my own waist. They hauled me up far enough so that I could see friendly eager faces, and see the hands reached out to me, but then they dropped me and I was left dangling in mid air, and badly winded and bruised by the impact. They kept calling down to me encouraging words, but they couldn’t really help. The emergency services (police) were called in, but that made it all worse.

    They did their best, I suppose, but they’re badly stretched. And in the end they admitted that they couldn’t help me. Despite putting me on a high risk list.
  20. SheilaNaGig

    SheilaNaGig Struggling and striving

  21. Edie

    Edie Well-Known Member

    Sorry to hear that hun xx
    SheilaNaGig likes this.
  22. Sasaferrato

    Sasaferrato Grateful for what I have.

    Speak to ViolentPanda about the forms etc, he is the expert on the boards.
    scifisam likes this.
  23. ViolentPanda

    ViolentPanda Hardly getting over it.

    Just a really minor correction - PIP doesn't depend on your disability, it depends on the effect whatever disability you have, has on you. For example, I'm able to walk, but I'm not able to walk at all without a great deal of pain. It's the pain and its effects that are judged.

    Applying for PIP is shockingly complex, even for those of us who are used to convoluted, deliberately-tricky and overly-bureaucratic claim forms.
  24. ViolentPanda

    ViolentPanda Hardly getting over it.

    Good to have a GP referral, although self-referral is still allowed. May have to wait almost forever for an assessment to be done, though.
    Dan U likes this.
  25. ViolentPanda

    ViolentPanda Hardly getting over it.

    You can be assessed as requiring help with chores, and provided with "home help".

    It's bad because your operation not only removed tissue, it interfered with muscles and nerves, and the trauma of it takes a while to recover from, even if you went into things super-fit. You went into it already debilitated.
    When my leg was smashed, it took me - not including 7 months in traction - a yr and a half to recover from. The learning to walk again was easy enough, but the dealing with feeling absolutely exhausted after just standing for a minute - then 2, 3, 4 and 5 minutes, eventually - was horrific. Not just my legs, but the whole of me aching and shaking like an old geezer sat in snow during a blizzard. Even once I was "rehabilitated" and didn't need physio or OT support any more, my stamina took another yr to fully come back.

    I suspect they'd suggest some form of passive muscle-building exercise. Usually very mild, and based on reps rather than on weight.

    Yep, a friend suggested it for me, but although I don't sleep much - not at all for most of the week, I don't really suffer too much from not sleeping, as I'm not insomniac. Other people do, and uncontrolled pain is a big part of not sleeping for many people. Not so much an uncomfortable mattress issue, as a "can't get comfortable on ANY mattress" issue.
  26. ViolentPanda

    ViolentPanda Hardly getting over it.

    I wouldn't piss on the "help" that the DWP give you, and many other avenues of assistance are massively over-booked. IIRC SheilaNaGig is in Lambeth, so will come under DASL/We are 336 at 336 Brixton Rd. They're good, and a lot more informed than the CAB. MacMillan are also top-notch.
    clicker likes this.
  27. ViolentPanda

    ViolentPanda Hardly getting over it.

    "No, only with..." and then a detailed, itemised answer is the best approach always. What works against people is the embarrassment factor, the "oh, I don't want to say I can't do that without getting the shakes and pissing myself" thing that means claimants leave things unsaid.
    Last 3 times I've been re-assessed for ESA (2) and PIP (1), my reply has been a grunted "well, not brilliant, seeing as I'm having to come here". They always look so shocked at a bit of honesty!
    ALWAYS go accompanied by someone you can trust, if at all possible.
    Also, bear in mind that these "Healthcare Professionals" are mostly nurses and physios (Maximus employ all of half a dozen actual doctors, nationwide), and will have little or no experience in complex multi-system health issues and disabilities. Talk to them clearly and in detail, make sure the assessment is recorded, and have your companion conspicuously taking contemporaneous notes. Ask for a copy of the assessment to be forwarded to you. Often the replies noted on the assessment form are totally at odds with what the assessor has been told. You're just a fee to them, not a person.

    Puddy_Tat likes this.

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