PIP.....YES YES YES!!

[Barton]

If I didn't know you were joking, Carolyn........

[Carolyn52]

So Barton after our coffee on Monday ..u don't fancy a jog along the quay afterwards then? Ha ha ....
You now have options as finances will be a bit more stable with pip.
Carolyn xxx

[Barton]

You always give good advice, Carolyn - I just need to learn to listen! And I will NEVER, EVER bungy jump from ANYWHERE!!!! Never, ever even considered it for one single second! The words head and need and examining come to mind for anyone who does that!

Back to the thread subject - yes, I will now have the option of giving up work if I want to, and recently that's looking more and more likely (boss related mainly, not just healthwise).

Hugs. Barton.x

[Carolyn52]

Hiya Barton .soooo glad u got pip ..for once I gave good advice !!
You deserve it as u have limited mobility and that's what its for!!
Put it this way ...neither of us will be running marathons or bungee jumping off John Lewis !!!!
Carolyn xxxx

[Barton]

Great news today - my GP kept her word and forwarded a completed DS1500 form to Hospiscare. They rang me yesterday and a very lovely, helpful lady came this afternoon with all the paperwork. When she rang, I said I wasn't sure I was entitled to PIP (I didn't want to waste her time if I wasn't). She said that as my GP had filled out that form, that I would get it. She came today to ask 4 easy questions. The answers won't affect me getting it, but they will affect the amount I will get. If things change and get worse, I am to ring them and I would be able to get more money. Apparently it will take between 2 and 3 weeks to come through.

I would recommend, if you are in any doubt whatsoever about applying, do it - you just might get it. I'm kicking myself now for not having done it sooner (sorry Carolyn - I should have listened!).

Hugs. Barton.x

[Spudgirl]

I too took my PIP form to Macmillan. To the financial person.  

l couldn't face completing it myself and was sure I'd get nothing anyway.  

I just signed the form, she did everything else.  

I'm now in Support Group with the mobility element too.  I'm glad now because my ability to get about and do things myself has started to decrease  pretty quickly. 

My Onc had initially said I wasn't a a stage to get a DS1500, but when MacMillan got involved my Onc did the form, no problem. 

[Barton]

Many thanks, Happyboobs, Waffles and Kirky. I will just have to wait and see I think. It's got to be worth a try, though. Carolyn has been urging me to give it a go for months now, but had been a bit nervous. My GP was happy (wrong word, but you know what I mean) to do it for me when I asked so I might just get it. Will let you know.

Hugs. Barton.x

[Waffles]

Hi everyone,
I asked my registrar about completing a DS 1500. She referered me to my BCN who referred me to the local McMillan moneymatters advisor. I had a meeting with her basically filling in all my name,address , gp details. She got all the medical bits filled from my BCN. I didn't see the finished article. The McMillan advisor phoned with the PIP people with all the details and I was awarded PIP in about a fortnight. Totally stress free. They were all just brilliant. I got enhanced rate and that even all though I still work. I even managed to get a bus pass but aI didn't go as far as blue badge. I'd say your local McMillan advisers don't seem to take the 6month thing as literallt as some doctors. Best wishes xxx

[kirky_68]

Hi yes same as me! I am on Cape and some days are worse than others but think about your bad days and claim just the mobility element like I did. Well worth it

[Happyboobs2]

Hi,

Please if you have to fill in the forms  for PIP make sure you state how you are at your worst especially if you are having several cycles of medication and if the effects are accumulative .

You mentioned that you cannot walk far then and get breathless.

All the best.

xx

[Barton]

Thanks Paula. I have checked out your link, and read through the questions. I am pretty sure now that I will not be entitled to any money at all. I can do all the tasks on the list at the moment - which is, of course, good. The only real trouble I have is when I have been on Capecitabine for a few cycles (currently on a break, which will end this Thursday when I start back on the pills). I get terribly breathless and can't walk far without having to stop for a rest and, preferably, a short sit down. I find even the gentlest slope really difficult then.

Oh well, will wait and see.

Part of me thinks that, as I have worked and paid NI all my working life, and that it is highly unlikely I will make it to 66 (when I will finally be of pension age since the goalposts have been moved) - am 60 this July - that I should be entitled to something! Probably shouldn't think like that!

Hugs. Barton.x

[kirky_68]

Hi Barton, you don't have to call youself so poss BCN or MacMillan did it for Mollymop they just need to know the answers and some personal info like NI number and bank details.

[Barton]

Thank you both - Mollymop and Paula - for your replies. However, they seem to contradict each other! I think I will just wait and see what happens (will check out the questions from your link, though, Paula). Perhaps it just depends on which part of the country you are in - the NHS lottery they keep talking about!

Thank you both very much, though.

Hugs. Barton.x

[Mollymop]

Barton my Consultant filled out a DS1500 (and told me not to read it!!) I did not have to fill in or answer anything else and get the higher rate PIP. Hope that helps xx

[kirky_68]

Hi Barton, the questions are done by phone. They're split into 2 categories - looking after yourself and getting about and if you say everything is OK you'll get 0 points and no payment so think about your bad days and don't say you're OK if sometimes you're not. These are the questions

https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-self-test

relatively easy and straightforward, call takes about 20 minutes

Usually once you've done the call your GP sends the DS1500 direct

https://www.gov.uk/pip/overview

is a good site with phone numbers on etc

The ds1500 removes the need for medical and form filling and speeds everything up but doesn't make you automatically entitled.

I have multiple mets including bones and got the higher rate mobility as I'm not so good walking - this also gave me access to higher rate ESA and a blue badge.

Hope this helps

Paula

[Barton]

I hope someone can clarify things for me - I saw my GP this morning, as she is happy to fill out a DS1500 for me, but says I need to send it off after completing it. She is going to go through the Hospice people (things not that serious yet, thank heaven, but was told they are happy to help with all sorts, not just end of life), and says they will help me apply. Am I correct in thinking I just need the DS1500, or do I need to complete a PIP (?) application form as well? I'm not sure if I would qualify for that, as, at the moment, I can still get around fairly well and do not need help dressing, etc.

Any help/advice gratefully received.

Hugs. Barton.x

[rosie53]

Thanks Nicky, that's a very good point! Like you say we live with the uncertainty of not knowing if and when this horrible disease is going to take us!
Hugs Janette xx

[nicky08]

Hmmmm, Garry, he is definitely taking the hard line. I presume he is certain with no treatment at all your wife will be still here in 6 months. Let's all hope she will be of course but I doubt he'd write that down in case you sued him if she wasn't! Grrrrrr, it makes me mad, some GPs should also read this forum and see how quickly things can change before judging whether they are likely or not.  I'm also not sure why he filled it in as I had always thought that was its main purpose, to allow any benefits to get to those who need them as quickly as possible so if he hasn't ticked that box then why bother signing it.  Sorry that was a rant. if only they realised how much we have on our plates already without having to jump through hoops to get financial assistance when most of us have to deal with constant side effects, aches and pains, not being able to work (although we'd love to) and continuing hospital visits.  I hope the DWP look favourably on your application and  realise, as a secondary BC sufferer, your wife should be getting some financial help sooner rather than later.

Janette, I know what you mean about renewing PIP and the worry that it causes. My view is I'm more likely to die in the next 6 months than when I had it awarded, not less likely! Might be worth bringing that up if you have to have a similar discussion with your GP. After seeing how quickly our lovely Marirose went downhill and passed away, in a matter of days since her final posting, we all know how things can rapidly change.

Nicky x

[rosie53]

Morning Garry, well hopefully it will get sorted soon for you now.......why does everything have to be a battle!
I've got my renewal coming up in a few months must admit I'm not look forward to that, my gp filled the ds1500 last time (on initial dx) just hoping he will do it again this year. It had taken off such a financial worry and allowed me to drop my hours at work.
Good luck, keep us posted!
Janette xx

[Crusty]

Evening Ladies, hope you all had a lovely Christmas and new year. Just a small update. Now the festive season is over we went to our Gp and at first he refused to sign the Ds1500 as looking through the notes he didn't think my wife would pass away within the six months. He was very definate that it has to be 6 months or nothing. But after talking with him for a little while longer and generally asking if he could reassure me my wife would still be with me in 6 months time, to which he couldn't, he agreed to fill one in, although he did say I'm not going to tick that little box at the bottom which asks if in his opinion will the patient survive 6 months.  Seems like he's taking the hard line as well and we're gonna have to go the long route. Oh well I suppose it's  something to do to keep my minds off things. 

On the plus side I've managed to get my wife to start browsing the bone mets pages.

Crusty (Garry)

[rosie53]

Hi Crusty, only just catching up with the forum (been away for Christmas...that's another story...nightmare!!)
Anyway just wanted to add my story, I also applied for PIP and both my bcn and onc wouldn't fill the DS150O saying I "wasn't at that stage yet" in the end I went to my GP and he was more than happy to fill it in for me!
Although I'm trying my best to keep life as "normal" as possible i do get very tired and achey and sometimes have bad days with hip pain and for this reason I have had to cut down my working hours to just 12 per week and be being awarded PIP has allowed me to do this without having to be constantly worried about finances.....we have more important things to worry about!
Hope you manage to get it sorted.
Janette x

[Crusty]

Thank you very much ladies for the wonderfull kind words and advice. Every thing is all so much of a blur at the moment and thats why i take solace in reading from people that either have gone or are going through it. it really does help. Once the shennanigans of Christmas is over, we'll got to our Gp and request the he fills in a ds15000 form and see where that takes us. In the meantime id like to wish everyone a real merry merry christmas and i look forward to participating in the secondries thread with you all and hopefully my wife will too.

[nicky08]

Hi Crusty

You should definitely push to get PIP via the DS1500 route. This bypasses all the medical questionnaire, as has been mentioned. The life expectancy element of the Ds1500 is why some professionals won't sign them. My GP at first said he wouldn't then I asked him if he could guarantee that I would be alive in 6 months and of course he couldn't, no one can, so he signed it. Also the 6 months to live is basically if you had no treatment whatsoever and, unfortunately, it would be the case for many of us if we had no treatment, we could all die within 6 months. I have also seen ladies on here who have been living a full and busy life who have taken a turn for the worst - all within 6 months, this disease is so unpredictable that, for us with secondaries, any financial benefits we can get do make a difference. You can get help with the forms from Macmillan, CAB, your GP or your oncologist ( although in my experience oncologists know nothing about the benefits we can claim and Macmillan were the most helpful).

As has also been said your wife can also claim for ESA (employment support allowance) if she has full NHI contributions (or there is a means tested route).

 This is for all cancer patients whose working capabilities are affected by chemotherapy or radiotherapy which has meant their hours have had to be reduced or they have had to stop work whilst having treatment. Getting PIP will fast track you into the support group for this allowance.

I hope that this can get sorted for your wife, it is one of the extra things we have to chase for when we feel pretty rubbish. Also do check out the Bone Mets thread, there's lots of good advice and support for all secondary ladies, whether their mets are in their bones or elsewhere, it is the most frequented thread and you'll soon learn that you and your wife are not alone in this horrible situation of a secondary diagnosis.

Nicky x

[kirky_68]

Hi Crusty

PIP is paid to people brn after 1948 and is made up of 2 parts, daily living and mobility. If your wife's diagnosis affects her ability to either do stuff for herself or get out and about then she would get a payment under either or both sections. All you need to do is call the PIP helpline and answer some initial questions.
Think about how she is on her worst days and then ask can she do the cooking, cleaning, washing etc and can she walk either up to 20 metres (higher rate mobility) or 20 to (I think it's 50 or 100 metres) for lower rate.
I was asked if I could walk 20 metres without getting out of breath and could honestly say I am out of breath before I even set off 🙂 and this was accepted as higher rate mobility issues.
What the ds1500 does is cuts out all the medical questionnaire and makes the process much simpler, it doesn't affect payment amounts but reduces waiting and processing times as application is fast tracked.
Your BCN is taking a hard line view as the requirement for the DS1500 is that you have less than 6 months to live but this 6 months is widely recognised as a statistical average and is not supposed to be an individual prognosis because no one can tell you that anyway!
My GP actually did my ds1500 for me and had no issues.
As others have said, nothing ventured, nothing gained. Ask your GP or MacMillan nurse if they will complete the ds1500, if not I would still claim but be prepared for lots of forms!
When you ring to apply for the PIP if you answer no you're wife's not affected to every question you won't get anything so think about her at her worst and don't put a brave face on things.
If accepted it also makes ESA easier and puts you in the support group at higher rate if you're not already on it so i definitely worth pursuing if you think it applies to you.
Best of luck with it all.

[Lynnq]

My onc and BCN were both very helpful when I applied for pip.

However a friend asked her oOnc for DWP1500 and he said 'no you're not ready for that yet'

Her BCN asked another Onc - on the same team - and he signed immediately. It is so wrong that differing opinions should be involved.

Our GP is also very helpful so try yours....

[stresshead]

Hi Crusty, what a kind and thoughtful husband you are.

I dont really have much to add but my chemo team got me in touch with a macmillan nurse and when i told her my onc wouldnt sign the ds1500?? she said leave it to me..the next thing i knew i had the enhanced rate and a blue badge. You should get something even if its the basic...kep plugging away and let us know how you het on. Love to you and your wife. x

[funnyface]

Crusty, I don't know much about PIP, bc I live in the USA. What I have noticed is most ladies on here seem to get it.  In the US we have disability and there is a lot of paper work and questions.I automatically qualified bc of my diagnosis. My husband however didn't have an automatic qualifying illness. A lot of people over here use a lawyer to help them. Others try it themselves and use a lawyer to appeal. I filled out my husband's and was honest. Over here they send you questions that you need to be careful how you answer them. Seriously, one question was, Do you have a dog? How do you take care of it? Obviously, if you tell them you have some huge breed that you tug around and walk for miles, it is going to throw up a red flag. I don't kniw what type questions you get, but just use common sense. Go for it!!! FF

[mint_tea]

You Go to your GP and ask for Ds1500.  They are obliged to give you one upon request.  It simply states your situation (Mets to ... etc) and does not ask for any opinion on life expectancy.  Phone the helpline number and ask to apply via special measures. They will ask some basic details (inc your bank account details) and they should then ask you to send them the ds1500. There should be no need to fill in any forms.  I had my reply within 2 weeks and had the money (backdated) straightaway.  Once you have PIP you can apply for a blue badge.  Hope this helps.  You are entitled to this benefit, so please go ahead and claim.

[mint_tea]

Go to your GP and ask for Ds1500.  They are obliged to give you one upon request.  It simply states your situation (Mets to ... etc) and does not ask for any opinion on life expectancy.  Phone the helpline number and ask to apply via special measures. They will ask some basic details (inc your bank account details) and they should then ask you to send them the ds1500. There should be no need to fill in any forms.  I had my reply within 2 weeks and had the money (backdated) straightaway.  Once you have PIP you can apply for a blue badge.  Hope this helps.  You are entitled to this benefit, so please go ahead and claim.

[Carolyn52]

Hiya crusty
Sorry about your wife's dx ...it's bad enough to deal with this blow but to have to seriously think finance and extra expense is also a worry. I just dialled the number direct ( u can Google to get the helpline) a very helpful lady took my details and sent me the forms. I assume they confirmed things with my oncologist and six weeks later I was awarded it.
There are so many extra expenses involved especially petrol or travelling to hospital and things at home ..do try again.
Carolyn xxx

[Happyboobs2]

Yes, please try your GP , if he/she isn't helpful phone the PIP people as the effects of chemo etc may be enough plus the effects of her surgery, they should send you the forms. Fill them in as she is at her worst, put it all down in the application.

 Send copies of all the hospital results etc.

I wish you all the best and send hugs  to you both.

[Crusty]

Good morning, newbie here so go easy on me , im on here on behalf of my wife who doesnt really get on with finding out too much information, whilst i have been on here lurking and reading since she first got diagnosed.  I have a question to ask regards this PIP. My wife was diagnosed with with breast cancer at the start of Nov, it was a mere 15mm tumour. Biopsy showed lymph node involvement in the armpit at least. so a mastectomy was booked in for the start of December to get rid of this evil thing. Meanwhile they sent her for other scans and tests which unfortunately came back showing scondries Mets to the spine and hip, with an added bonus of an unknown at the moment tumour the size of a tennis ball attached to the sacrum. they are refering her to kings for this to investigate. They started her on Chemo in earnest the first week of December.

     After looking a lot at this site i kept coming across this PIP. so i phoned our local Macmillan welfare office who promised to look into it. she spoke to our BCN who refused to sign off a DS15000 form who stated that "shes not at that stage yet". so at the moment we are sort of at an impasse with what direction to turn. My wife is Stage 4 grade 3 and that sounds fairly serious to me. I know she is not currently about to keel over at anytime but the chemo is now starting to hit her, with fatigue, not wanting to do a great deal, lack of sleep and not really wanting to walk a great distance. Im aware its probably only going to get worse as obviuosly Chemo is accumulative.

    I was wondering, should we be going to our GP to ask for a DS15000 form to be signed off? should we be bothering at all being as our BCN want really interested?  Dont want to sponge but at the same time i dont want to miss out on something we migght be entitled to, we've both worked and payed our taxes all our working life.

Thanks in advance for any advice!

[EJ81]

Great news Mollymay. I am so glad I have mine as I am only doing supply teaching now, so not regular money. PIP is a real safety net. xxx

[Mollymay]

I attend the Lymphoedema clinic at the local hospice and the nurse suggested that I speak to the Macmillan advisor that also works there regarding any benefits I might be entitled to. Didn't think it would come to anything as I'm still employed and on full pay for 6 months while off sick and then half pay for a further 6 months, however he thought I did have a case for pip and with my permission he contacted my onc and made the application on my behalf. Result - I receive the top level payment and got a blue badge and he did all the hard work for me - what a star!

[Stacey]

The palliative care nurse filled at the 1500 (?) form for my husband ... and he lived more than 6 years afterwards. I did have to complete a new appliations for him every 3 years afterwards. If you do end up form filling as others have said answer the questions for your very worst day; not the average or best days for sure!  

[kirky_68]

Hi Wendy, PIP is made up of 2 parts, daily living and mobility. If your diagnosis affects your ability to either do stuff for yourself or get out and about then you would get a payment under either or both sections. You say mobility not affected but think about how you are on you're worst days and then ask yourself can you do the cooking, cleaning, washing etc and can you walk either up to 20 metres (higher rate mobility) or 20 to (I think it's 50 or 100 metres) for lower rate. I was asked if I could walk 20 metres without getting out of breath and could honestly say I am out of breath before I even set off 🙂 and this was accepted as higher rate mobility issues.

What the ds1500 does is cuts out all the medical questionnaire and makes the process much simpler, it doesn't affect payment amounts but reduces waiting and processing times as application is fast tracked.

Your onc is taking a hard line view as the 6 months is widely recognised as a statistical average and is not supposed to be an individual prognosis because no one can tell you that anyway!

My GP actually did my ds1500 for me and had no issues.

As others have said, nothing ventured, nothing gained. Ask your BCN or GP if they will complete the ds1500, if not be prepared for lots of forms! When you ring to apply for the PIP if you answer no you're not affected to every question you won't get anything so think about you at you're worst and don' put a brave face on things.

If accepted it also makes ESA easier and puts you in the support group at higher rate if you're not already on it so i definitely worth pursuing if you think it applies to you.

Best of luck with it all.

[Lynnq]

Wendy. Have you asked your Onc or your BCN. They can fill out a DWP 1500 form which means fewer questions and a lot less form filling for you.

I believe that some medics will fill it out indicating that the cancer is incurable and without treatment they cannot guarantee that the claimant will live for the prescribed 6 months.

[Wendymb]

Thanks for your comments, seeing someone else tomorrow from Breast Cancer Care re PIP. So will know more again, might apply anyway.

[Happyboobs2]

Hi Wendy

re PIP , please claim and when you fill in the forms explain how you are at your worst....

I mentioned two surgeries, chemo and how that affected me. 

I sent copies of all documents that I had referring to my diagnosis, grade etc.

I am not terminal(well nobody has ever told me that!)

I was granted an amount of PIP, probably not the highest rate but much appreciated.

You will not get it for the first 3 months and have to be expected to be unwell for 9 months.

Good luck, 

xx

[stresshead]

Hi wendy, i may be wrong in what i am about to say bt if so, someone will be along shortly to correct me.

I think you can claim for PIP in any case but can only get the higher rate if a DS1500(??) form is completed by your onc, doctor ect. This verifies that you are terminal with 6 months left to live and for that reason many Medics wont sign the form. My onc wouldnt so i got the lowere rate. It was only when i was visited by a macmillan nurse that she sorted it out for me...so maybe thats the way to go.

I'm not sure whether  self-employment makes any difference but dont see why it should..i would have said its even more importsnt in your position.

Please apply....they can say no but you wont be worse of for it and you may have something to gain.

Let us know how you get on. x

[Wendymb]

Dear All

I am 47 years old self employed, I have been told by CAB advisor that I can't appy for PIP as i have more than 6 months to live (good) and no mobility issues, is that right? I am hearing conflicting views. 

Obviously no sick pay when self employed and still a mortgage to pay is putting a strain on my live.

Cheers

Wendy

[stresshead]

wel done shuff truffle...my onc refused to do it for me but my macmilan nurse soon sorted it out. With me not working and my husband being finished from his job because of me and his health problems, we rely on the money to live. Glad you didnt wait any longer.

[truffle_shuff]

 Morning Ladies,

 Yes I hope others read this thread  and go for it,  instead like me, listening to  some others ,and doubting, hope you all have a lovley day, the weather is just glourious. ,

keep well xx

[EJ81]

Really glad you went for it truffle. It just takes the pressure off doesn't it.
I think it's worth remembering that the assessment does seem to take into account the debilitating effects of chemo along with any other problems we are coping with so I think the 'not ill enough' approach is a bit daft. I hope this might encourage anyone else who is hesitating to go for it xxx

[rosie53]

Great news Truffle, it is eases the pressure off the financial worry we have due to not being able to work/cutting hours. My onc and Mac nurse also refused to fill in my form saying I wasn't "poorly enough so I asked my GP who had no qualms about filling it in for me!
Hope it helps to take some pressure off.
Hugs Janette xx

[Waffles]

Hi truffle shuffle,
I was very reticent about applying for pip too but was encouraged by the wonderful ladies on this site to do so. I got the enhanced rate too. It makes such a difference not having to worry about money. xxx

[Carolyn52]

Hiya truffle shuffle
Whoop whoop ...it will help with the extras that this disease causes.
I decided against the car but find it useful for extras ...chiropdist etc etc.
Enjoy and spend it well.

[truffle_shuff]

Hi Ladies,

After reading this thread, I decided to go for it, even though I thought it would be  a waste of time. My mc Mill nurse advised aginst saying  its to early on in my disease after I had sent it in  ,and to wait until  i was more needy.  So I rang them yesterday to say cancel it, to be told I had been awarded the enhanced amount based on my Gps letters  and what  I had written , every word true . 

So thank you all so very much,  as now I hope to get an automatic car ,  I have nerve damage in hand and arm  so this will be great , and my leg is wonkey donkey too.  It also means I can get a cleaner in to do those jobs I cant do. I am also do thankful for this as I have to wait until i am 67 ,another 6 years  for pension,  dont think  I will ever see that  either.

 Keep well all xxx

[DebHummingbird]

Thanks Janette x

[DebHummingbird]

Thankyou mint tea and Natalie xx