Well I saw my GP, who is a really lovely, easy to talk to lady. Said she would willing help me if she could but if she did complete the form saying I only had 6 months to live, medical reports would most likely be asked for and checked by DWP and if they didn’t fit then I’d be re assessed. I did ask her why I hear of other people getting it in the same position as me, replied saying things have changed and what happened before is not the case now. She encouraged me to apply myself and then she would support my application in any way she could. Apologies if I sound so negative about this process, trust me I wish I was writing something much more positive. Thanks again to everyone who offered me encouragement, it was much appreciated, Kxx
Hi Carolyn, I am really sorry to hear this, I can only imagine it’s a regional thing, as nothing else really makes sense to me! Please don’t anyone take this the wrong way, I think it should be awarded, but it can be awarded when able to work some hours, yet when I was refused I was told it was because I could wash and dress myself, go to the loo unaided, make myself a hot drink and use a microwave, and I didn’t qualify because it is to enable you to be independent and if I could do those things I could live independently. Also said it was nothing to do with finances ie hospital visits, or not being able to do such things as housework, washing, ironing etc! I had struggled for a while prior to diagnosis with ironing and things like changing the bed due to my painful neck, when I said my cousin had to help me as I live alone, weren’t interested in the slightest, just reiterated that it was to help me with personal needs. I then asked was I expected to live in a dirty house, sleep in a dirty bed, only eat microwaved food and never iron my clothes, it again fell on deaf ears! When I spoke to the lady from ageuk, who helps at my hospital with such things, I asked her if they had targets they had to achieve, she said that while she had no evidence she thought they did because to her there sometimes didn’t seem to be any uniformity to the decisions made and some just didn’t make sense. I’m sure I will be refused again too. Sorry if I sound really negative but I just wanted you to know in case it can help you to prepare in any way if you do have to be assessed. Kxx
Oh Carolyn, I am truly shocked by this! I was under the impression that a secondary diagnosis automatically entitled you to PIP! What on earth are they thinking? I'm not surprised you are taking this personally - I would, too. It must be very upsetting. Have they given you an appointment yet? I think you should go the DS1500 route instead, if possible.
Please let us know how things go. And if you need a personal reference, I'm your woman!
Thank you Barton, my finger joints have swollen up this week making it difficult to hold things at times. While I’m not glad it’s happened, at least it’s not waited until next week to present itself, which is what would usually happen! Will let you know how I get on, thanks again xx
As Nicky says, the DS1500 implies that you only have 6 months left to live. As she also says, no-one knows how long you have. But also remember, PIP is awarded for 3 years, so they are obviously not expecting you to immediately snuff it! It might be worth pointing this out to your GP if she is reluctant.
Hugs and good luck for Friday.
Thank you Nicky! I did appeal last time but they turned that down too. My general health isn’t too bad but, like most, I have bad days and don’t think anyone could say I’m as good as I was, I definitely couldn’t hold down a job. Seeing my GP Friday, so will see what she says, she was very sympathetic last time and did say she was willing to help me if she could, but just how far, who knows! I’m probably my own worst enemy as I’m not good at asking for things regardless of the situation. Thanks again, Kxx
I meant to have replied on thus thread but as it ended up being an extremely busy week for me last week I see I didn't get around to it!
I originally had DLA (Disability Living Allowance) which was the predecessor of PIP. I had that awarded through the DS1500 route that my GP filled in. Btw originally he didnt want to fill it in as it is states that the patient is likely to die within 6 months. However I asked him could he say categorically that I wouldn't die within 6 months, which of course he couldn't - I doubt any medical professional can give you 100% on that one. The DLA then came up for renewal about the time PIP was being introduced so I filled in the forms rather than get another DS1500 filled in. I was turned down - despite the fact that I also had developed heart failure at that point and was very breathless etc etc. I went to the MacMillan advisor at our local hospital who said to go down the DS1500 route, which I did and got my new GP to sign it. At the time I had also developed liver mets so I think that gave him no qualms about the 6 month rule! I was awarded PIP, which was backdated to the time my DLA had been stopped. You're right, it is a battle and unfortunately the forms you have to fill in, if you go the long route, are not geared towards a terminal illness which still affects our everyday lives even if we don;t show outward signs of it. I was also told, if you are filling in any part of the forms always write about your worst day/s, there is no point thinking of your good days. And, although it is yet more hassle for us, if you are turned down I understand if you appeal the decision you are likely to have it awarded. Good luck
Hello Kate, so sorry for delay in replying - I've only jusy spotted your message. In reply, I would say wait until you know what your GP says. If your GP refuses (I really don't think they should), follow the route suggested by Sandra - contacting McMillan. I have no idea why everyone seems to be making it so difficult for you! If you are entitled to claim, they should help you to claim!
Hope things go well for you,
Kate, I live in the USA and we have social security disability. It sounds like they look at a lot of the same things. Over here metastatic breast cancer falls under being fast tracked. Lol They tell you within a month that you qualify with out any questions, but you still have to wait 6 months to get it.
My hubby 's ailments weren't on the fast track, so he had to answer a ton of questions!! They even asked if we had a pet and how it got taken care of. We told them we live out in the country and could just let her out on our property to go. They asked how long could you sit or stand, so many little things to trip you up. Think before you answer. FF
Kate, if you have problems with finding a Dr to complete the DS1500 like I did, contact Macmillan. If you have to take the long route to getting PIP they will help you complete the form or direct you to a welfare worker who can help you, remember to put in as much evidence as possible, I included copies of all my letters from my Oncologist to GP, they can't dispute hard facts. You can also include statements from people who know you saying how your diagnosis has effected you, keep a diary of how you cope each day and include that, remember also to include things like using special equipment, I have electric tin opener and bottle opener, shower seat, sock donner, long handled brush etc.
Good luck x
Hi Barton, thought I'd replied to you but for some reason I can't see it in the thread, but apologies if I end up replying twice! I'm seeing my GP end of next week, would you wait until then to apply or contact them beforehand? Thank you xx
Hello Kate, have you considered going by the DS1500 route through your GP, rather than the assessment/form filling route (although I know that was the route Carolyn followed and was originally successful)? I was advised to follow the DS1500 application, and found it very easy. My GP was extremely helpful. Your GP should be able to give more details on the form he/she fills out about your actual health/lack of it! I wasn't "assessed" as such, but my GP knows me and the Hospiscare Nurse was very sympathetic.
Hope you are successful.
Oh thank you Carolyn, you are so thoughtful. I wish I hadn't gone back through the thread now but did so thinking there would be someone else who'd been rejected who may be able to give me some advice, while I'm glad for everyone it was a little soul destroying to find I was the only one! Think it's just typical of my whole experience with this disease, it's all feeling like a battle within a battle, so to speak! Thank you again Kxx
Can anyone offer me any advice please??? As I've previously said I applied for pip two years ago and was unsuccessful, after thinking about it and the wonderful encouragement from Carolyn and Barton I am definitely going to re apply, so have rooted out my initial application and looked back through this thread, and I cannot see anyone who was declined and re applied? I think Sandra did but believe she was already in receipt of part of it, but please correct me if I'm wrong! If anyone has done this could they please let me know how they went about their second application? I wonder sometimes if these things are regional, as I was really made to feel uncomfortable for applying by the assessor. Having been told for years there was nothing wrong with me, when I kept saying I could feel a lump, I'm diagnosed with stage IV, was advised by my Oncologist that not going back to work was a good idea, yet I don't receive a penny...have worked all my life so have now got my small pension but previously had to rely on my savings (and have also used up my pension lump sum), which have now almost gone! To top it all I was expecting my state pension at 60 but as someone born in the latter part of the 50's now have to wait another 6 years...haha to getting that!! I just feel badly let down by the system and would really appreciate hearing from anyone who has reapplied for this.......thank you Kxx
Thank you Barton! Much appreciate the encouragement, I was assured by the representative from Age Concern who visits our MacMillan centre weekly to help with such things that I'd be awarded it back then but sadly not and as said I did appeal. Am definitely going to re apply next week, I am left handed and it's the side affected, I did occasionally struggle then but person assessing me seemed to think it would be okay for my family to deal with any issues, even though I live alone! I would've understood if hadn't given me the mobility part but was a bit annoyed about the other. Anyway, two years on, well worth another go! Thanks again xx
Hello Kate, yes, Carolyn is right - please reapply. I, too, am mostly fairly mobile, and felt that I didn't deserve the benefit, but as I know I have gradually been declining in mobility (and was encouraged by Carolyn and others), I applied. I asked my Onc but he was unwilling to complete a DS1500 for me (I think this was mainly a time thing), however, my GP was willing and was very helpful. She set things in motion for me and a very lovely and helpful Nurse from the local Hospice visited me and finished all the paperwork for me. I was awarded the full amount, and was also then automatically entitled to a Blue Badge. I don't use it all the time but when I find it more difficult to get around it is extremely useful.
Please do reapply as I am sure you are entitled. Please keep us up to date on your progress.
Actually I've just been on the website and changed my mind, you're right, I'll apply again on Monday. I don't get any financial support whatsoever, just rely on my hospital pension and savings which are rapidly dwindling! I also fall into the group who have to wait until I'm 66 for my state pension but I mustn't get started on that!! Thanks again xx
Thank you again! I am mobile and as I said that seemed to be the stumbling block!! I do generally feel well but can now feel a difference. If that makes sense? I could definitively do with the extra as I haven't really worked for over two years now and no way could I do my job anymore, I worked in intensive care, but was told when I appealed it is purely a personal allowance and fact I was well enough to care for myself meant I didn't warrant the payment. My GP was willing then to fill in any form so I'm sure she still would, think I'll wait until after my scan so I'll have an up to date account of my position. Thanks again xx
Hi everyone, I am relatively new to the forum but was dx two years ago, stageIV with bone mets in my spine. I was advised to apply for pip following diagnosis but was refused, my appeal failed too. I believe my mobility was against me although I have other issues but they seemed to concentrate on that. I have been told I should now re apply, I wondered if anyone has experience of this, would greatly appreciate any advice. Many thanks x
Hi I think if you're 65 or over it's Attendance Alowance instead. Good info on Gov website https://www.gov.uk/pip
can still use ds1500 for special rules though,
Oh Carolyn, that's extremely annoying for you! I have never heard of anyone else mentioning this. The only thing I can think of is did the original form primarily concentrate on just your femur operation? Perhaps they consider that you should be fully mobile again now? It would have helped if you had had the physio I think you said they promised but that never materialised. Is it worth contacting your GP about this? He/she should be able to fully explain your situation to the DWP.
Hugs and good luck.
Hello Sandra - well done for being so persistent, but I can't help thinking that you shouldn't have had to be! I think that is disgraceful! I also think that both your Onc and your doctor are also at fault here - if you are "expected" to die within a few weeks, why is PIP issued for 3 years? I was lucky with my GP, as she understood and was "happy" to fill out the form for me. My claim was then completed by a Hospice Nurse, who came to my home.
I do hope that you are getting the amount backdated to when you first sent in the form?
Hugs, and very pleased for you. Barton.x
That is wonderful news, and well done you for persisting with it, you have got what you deserve, so pleased for you
Well after 6 months of waiting I have eventually been given PIP, the full amount. After my ONC refused to do the DS1500 because he thought I would live more than 6 months ( he was right, I am still here) and my GP insisted that the DS1500 was only for people with weeks to live, I wrote to DWP advising of a change in circumstances and sent copies of letters giving my diagnosis from my Oncologist to my GP, I was already in receipt of the basic living amount due to pain in my hip that I had been told was arthritis but turned out to be bone mets. I heard nothing from DWP and assumed they must have conveniently lost my letter. Having spoken to the welfare officer at the Hospice she suggested that we started my claim again from the beginning, I contacted DWP only to find that they did have my letter and were looking into it. The lady I spoke to said she had never seen anything like it before as there was no record of them contacting me only of them sending my paperwork back to Capita, she told me that it was all just waiting for a decision. I rang them again on Monday after waiting for another 6 weeks and found out that I had been awarded the full amount of PIP and the money went in the bank today, I am still waiting for the letter that was supposedly sent out last Wednesday. So now I have the money to go off and do things just a pity I don't have any energy or strength!
Hugs Sandra x
Oh my goodness this is dreadful . Docs get this wrong all the time.
Basically, can they absolutely guarantee you will not die within the next 6 months? No they cannot, so they can sign the form.
i went through Macmillan, I saw the welfare / finance person, I just signed the form, she did the rest. I didn't have to look at it as I found it too stressful, She got my Onc to sign my form, although when I asked him myself he had intitially said no. I did actually nearly die recently during a stay in hospital, which was completely avoidable mess up, not progression of cancer. So I think that proves the point, no one could guarantee I wasn't going to die within six months of my app.
Macmillan were great, Good luck xxxxx
Sandra, as the others have said, keep pushing. My Macmillan nurse sorted everything out for me. Let us know how things go. x
Thanks everyone, the Macmillan Community Nurse rang me this morning, the D's surgery had contacted her and asked her to get in touch with me, she is coming to see me next week.
I am now waiting to see what paperwork the Hospital sends me.
Hugs to you all
Hi Sandra, your GP is talking out of their behind - copied from an earlier post of mine - this is what the GP has to fill in - nothing to do with life expectancy.
The definition for the DS1500 isn't that you're terminal. The GP is asked to confirm:
Clinical features which indicate a severe progressive condition (examination findings and results of investigations including staging if appropriate)
Relevant treatment including response and planned treatment/interventions that may significantly alter the prognosis
Re getting PIP without the DS1500 - definitely get MacMillan to do the forms for you. The mobility question is
Can stand and then move unaided more than 20 metres but no more than 50 metres. 8 points.
And 8 points qualfies you for lower rate (12 points for higher rate - walk less than 20 metres)
You are getting rubbish support and advice all round by the sounds of it. I'd complain to GP practice manager if you have one that the GP you saw doesn't understand the process.
Hello Sandra, that is a disgraceful way to treat you! Good grief! If they expect you to die in a few weeks, why would they issue the payment for 3 years, after which you can re-apply (see Janette's post further down the page)?
It seems we are in a very similar situation - I am also 60 soon (July), and had also expected to get the OAP. Having to wait a further 6 years (which, like you, I find I am highly unlikely to reach - although I do intent to try, just to upset the b*gg*rs!) came as a huge shock.
Please keep trying for PIP - try Carolyn's route if you have to, but hopefully the McMillan Nurse will prove to be more sympathetic (couldn't get much worse!) than your GP.
I completely understand your anger and being so upset - anyone would be.
Hugs. We are all rooting for you. Barton.x
Well I eventually got to see a GP yesterday, not my preferred one, she flatly refused to fill in a DS1500 and said that by doing it she as making a legal declaration that I only have a few weeks to live! I tried to tell her that that's not the case but she made me feel that I was trying to get her to commit fraud! l ended up leaving the Dr's in tears. Not long after I got home the Doctor rang me to say she had been in touch with my Oncologist and that someone would be in touch with me. Shortly afterwards the Breast care Nurse phoned me, I was still quite upset especially as she had never bothered to introduce her self to me before even though she had seen me at clinic. I have asked her for copies of my letters and reports so that I can make a claim myself, I tried making a claim last summer after I had been told that the pain I had in my hip was arthritis but was turned down as they said i could manage to walk 50 metres. I told them that I could but only very slowly and with a lot of pain. Hopefully the letters and scan results will support a new application. The BC Nurse suggested that I contact Macmillan for help completing the form.
I still feel really upset and angry that I am having to battle the system and not getting the support expected, I will be 60 in 2 months, an age when I had expected to get my OAP, with the change to 66 I am highly unlikely to live long enough to claim it despite having worked up until recently and having 40 years of NI contributions, getting PIP would help make up for it.
Hugs Sandra x