Disability Living Allowance

[madge1]

Hi ladies, I was diagnosed with primary and bone secondaries in Dec 2013, with possible liver !!!! It was only reading this site that I thought I would try for PIP, I do work part time in the NHS (midwife) but currently off sick. I was told I have years by the oncologist (how many, who knows!!) but my GP was willing to complete the DS1500 even though it does say terminally ill, you are entitled to this and not means tested. I never thought I would ever apply for benefits. I am currently on capecitabine, seeing Onc. tomorrow for my 3rd cycle, I had commenced Letrozole but symptoms became worse!!!!! Good luck to everyone.

[livlassie]

Hi Anita. Please don't give up on pursuing this benefit. My onc apparently wouldn't sign the DS1500, even though I have very extensive bone mets which cause considerable pain and mobility issues. I didn't actually discuss this face to face with the onc, but one of the breast care nurses told me that the onc is very "positive" and won't sign anything suggesting that my life expectancy may be six months or less. Like you, i was very upset. felt like a sponger and cried all day. I felt that it was such a slap in the face. I approached a local MacMillan benefits advisor, made an appointment to see him and ask for help. He phoned me the day after the meeting and told me that he had the signed DS1500, signed by a doctor in my GP prsctice, who also telephoned me at home and wished me well with the application!  I felt much better and stronger after that. I had a background in welfare rights advice myself but couldn't be dispassionate enough to deal with my own claim. Good luck

Chilli - Sorry the DLA was refused but it's very important that you or anyone else in this situation ask for a reconsideration ( sometimes done over the phone, if you have all the info to hand) or a review of the decision. The DLA is not awarded for your condition but for the way your condition disables ypu and affects your life. It's very important that you give as much info as possible about this. When you answer any question try to imagine you on the worst possible day and then describe what life is like for you on that day. Concentrate only on these bad days and going through all the categories. keep these bad days in mind and answer each set of questions carefully relating the questions to how your illness hampers your normal activity. Remember that about three quarters of all the cases which go to review get the original decision overturned -so it's worthwhile. Good Luck.

[pam01]

Hi Desi......I think that depends!.....Mainly on how your onc feels about it......But also on the degree of disability the mets cause. I have PIP  and higher rate mobility allowance with "just" bone mets. But I have a collapsed vertebra in contact with spinal cord and am on oral chemo (ie capecitabine) which limits my walking...esp when (like now )I have very sore feet (and Hands).....I get it under DS1500 which my onc signed.It is bad that it varies from onc to onc (and GP to GP)....It is definitely worth discussing with the disability benefits advisor attached to the oncology service and with your onc. goodluck. Pamx

[Desi-2]

Can anyone tell me if you can be awarded this if you have bone mets but no organ involvement.

[anita27972]

Thank you for those words of encouragement I will definitely be pursuing it. Only trouble onc said im ok coz not going to die in 6 months 😕

[madge1]

Hi just wanted to let you ladies know that I've been awarded the enhanced payment for PIP !!!! After reading this post I thought I would ask my GP to complete the DS1500 form which she did, I phoned DWP was transferred to an advisor who took my details over the phone and said I would hear within 2 weeks, I received a letter to say my application was being dealt with and last week I received the letter to say I had been awarded it and backdated to the 7th march !!!! I urge all ladies to pursue this as you are entitled to this and is not means tested. Thank you to all those who posted on here xxx

[Lakeslover]

The key thing is the level of disability you have. If you need the required amount of care or have the required mobility problems then you will qualify for Pip. If you don't meet the criteria then you won't qualify. These levels are the same whether or not you apply with the DS1500.

The difference as I understand it with the special rules is only that the disability doesn't need to last for more than 3 months before you apply, and they process the application more quickly.

[FMJT60]

Sorry for the delay in my response but I was away for a couple of days. No my oncologist actually said to me , don't ask me how long you have to live because I don't know, but then I don't know how long I've got either. No one has ever said less than six months except the chap at the DWP and I said no. It's one of the questions they have to ask so that it can get fast tracked. Just give them a call and take it from there. The quicker you phone then that's when they will pay the allowance from. It's not means tested and you are entitled to it

Jane xx

[anita27972]

I feel quiet let down by my oncologist to be honest with you and I feel like I have been made out to be lying to try and get benefits. I've worked all my life and never claimed anything.

I've decided to not take the claim any further and I will go back or work full time.

[pam01]

I think this problem relates to the previous discussion we were having with regard to the meaning of the word "terminal"......not that this helps if the onc does not support you! Even professionals have difficulty in defining hte meaning of the word "terminal". Are we discussing the whole period of time from the time a secondary "non curable but treatable" diagnosis is given or that period of time when no further treatment is thought to be helpful. My onc said he was willing to complete a DS1500 because it did not ask the question as to "is she likely to survive less than 6 months"?...im not sure as to exactly what questions are asked. What is unfair as you say is that it is interpreted differently by different professionals......no matter what their earnings are!

[anita27972]

Hi Jane. Can I ask if you have been told that you have less then six months to live?

Apparently my oncologist advised that I do not have terminal cancer. Her letter to me stated unfortunately this treatment is not going to be curative and that her cancer is now likely to shorten her life. I have said that the prognosis is impossible to determine at the moment but that I would expect it to be years rather then months but I am not prepared to give an exact figure.

Maybe I have read too much Into my Diagnosis.

Xx

[FMJT60]

Impressed post too quickly lol, I meant to say that my GP and Oncologist were never involved


Jane

[FMJT60]

This subject totally infuriates me. I can't believe the different opinions from various health care professionals. I never used a DS 1500 nor was it mentioned it to me. I phoned up DWP, they took a few details and on receipt of the form the MacMillan benefits advisor came out to my home, filled out the form and sent it away registered post. I received my money back dated to the date I phoned DWP, within six weeks. I was also granted a one of payment of £350 from MacMillan. Why does it vary so much throughout the country, I wonder


Jane

[2catlady]

Hi,Anita,it's absolutely disgusting that we can't automatically get it. There are so many skivers who have never worked or payed tax and NI who get benefits . Nobody knows how long we will live not even the onc sitting pretty with his 100+K wages. Just another slap for MBC ladies.
Huge hugs to you,Helen xxxxx

[anita27972]

I spoke to a macmillan advisor and she advised that there is nothing they can do because the oncologist said I should not be entitled to it. May be its because I only have it showing in my sternum.

They said I don't have terminal cancer although the cancer I have is incurable.

I only wanted to apply because I have had to reduce my hours at work because im so tired. But find im having to stay at work longer to make ends which kind of defeats the object.

I have just spoken with some one else who has a spread to her bones and she has had help with it from her hospice nurse. This lady is also under the same oncologist.

This is so upsetting and stressful xx

[Porkie]

I asked my oncologist for a form DS1500 and he was happy to complete it albeit we both hoped that I would be around for more than 6 months - but with this illness you never know - things can change very quickly. At the time I was taking the EE combination - now on chemo. Previously I was on just letrozole for 2 and a half years and I didnt claim at this time because I had few side effects and actually felt quite well. I would be asking my oncologist to reconsider or I know some people who have found their GP will complete a form DS1500 - is this an option? Or perhaps contact Macmillian adviser for their expert advice? I hope that you are able to get it - it makes all the difference. x

[anita27972]

I was wondering if anyone could advise me.

Im really upset to learn today that I am not entitled to PIP because I am not going to die in 6 months. This was confirmed by my oncologist who told pip that I should not be entitled to it.

Has anyone else been in this situation.

[Mema23]

Don't give up, I'm sure if you have a DS1500 you should get it without an interview. I was trying to claim PIP with the long lengthy form, but as soon as I said my GP had signed a DS1500, it went straight though with just two questions about my mobility and the money was in my account withing 3 weeks. It was also backdated to the day of my first phone call, so if you are sucessful you should get a nice lump sum. Do you have a Maggies near you, or a macmillan nurse, it sounds to me as though they dont have your DS1500. Good luck x

[Lakeslover]

Are you sure they have your special rules form?

Please call Macmillan and see if they can help. No decision should take this long when you apply under special rules.

[anita27972]

I've just called the Dwp and they said it's still with an assessor and I've got to wait for a face to face assessment. I think I'm just going to leave it now it's causing me too much unnecessary stress 😠

[swanie]

I don't know if this will help or make you green with evny but my local hospice community nurse got my DS1500 and sorted out my PIPs for me.  All I had to do was sit on the sofa while she did it over the phone - it took her 20mins.  

If you can get theMacmillan or your BCN to refer you to yhe local palliative care team this may be the answer.

It has take me months to get to this but it worked - Good luck Jacqui

[pam01]

Hi Anita. i live in Wales which is one of the pilot sites for PIP. My DLA was due to end in April. (I have vertebral mets. One vertebra is collapsed and in contact with spinal cord but I am not paralised). In Nov I heard from DWP asking me to contact within a few weeks. I contacted by phone........after some problems (computer down, Lady not used to dealing with someone applying for PIP with DS1500) she asked me one or two very basic questions includinf distance I could walk. She said I would need a new DS1500. I discussed with my onc who agreed and handed signed Ds1500 to the hospital benefits advisor (not sure if Macmillan or Tenovus). she contacted me by telephone to check details and submitted forms about 2 weeks before Christmas. she said process would take about 5 weeks. I had heard nothing by mid feb (but was still getting DLA)so contacted the advisor. she phoned DWP on my behalf and was told it would be considered within next 2 weeks. I had PIP higher rate of both care component and mobility confirmed within 2 weeks........I think this is how the system is supposed to work...although probably a bit slower than ideal.....it may be quicker for initial claims....Hope this helps you and also anyone else living in a PIP pilot area. Pamx

[2catlady]

Hi,Anita,I'm sure you don't have to go for an assesment if they have a ds1500 . I haven't got one ,my claim has been in since august last year. I had to cancel my assesment in jan (yes,it took them that long for appointment to come through)as I was too ill to attend and the people at ATOS were so rude and nasty to my hubby and wouldn't give him another appointment for me. They said they were sending my notes back to works and pensions and I could explain to them why I cancelled and I'd go to bottom of pile!!!
Still haven't heard back,but like you I feel like giving up. I have enough to cope with without the added stress of facing nasty people. If I were you I'd ring Macmillan and ask them their advice . A Macmillan advisor filled my form in for me,so they have experience of these claims.
Good luck with your claim xxxxxxx

[madge1]

Hi everyone,
Following reading this thread, I asked my GP to sign the DS1500 form which she did ( I was diagnosed with a double whammy of breast cancer and bone mets in Dec '13) , I phoned for the form was put through to an advisor, who phoned me back and took all my details over the phone and told me to send the DS1500 to them and I will hear within 14 days!! Hopefully will hear from them next week and I'll let you know. I'm currently off sick from work and do get sick pay at the moment.
Good luck to everyone.
Julie

[anita27972]

Hi everyone
Thought I would give an update on the PIP claim.

I filled this big form about how my disability effects me. I also previously sent the ds1500. I've now waited nearly three weeks on top of the time from when I originally applied in January. I called them the other day and they advised that its with an assessor is this normal? They have now said I need to call back friday. Feel like giving up with it all really. 😟

[connie889]

Hi there
Im sorry to hear you was turned down definately appeal.

I too recieve dla for liver mets but was fortunate to have help from onc social worker and breast nurse.

Although sometimes i feel i dont need it as i feel fine it does help and my nurse said if it helps to pay for a special day spesh with treatment or blue badge helps with parking wen u are tired then why not.

I too had my claim done under special rules as the system just descriminates those with cancer which is unfair and ur apllication is processed by those with no medical background it should just be regardless of abiliity if you have seconday cancer you should recieve dla high rate im mean if there was a cure i say thabk you very much and u can have UR DLA back as i gt the rest of me.

I know soo many people who are not in receipt of dla just because they are working or living their life to the fullest.
Good luck with ur application xxx

[Lakeslover]

I don't think you should need an assessment if it is under special rules. It would be worth you ringing them to check that they are processing it under special rules, or even better do you have a Macmillan adviser who can ring them for you?

[anita27972]

Oh my days I have received the massive form now and completed it based on my worst day. At the end of the form it states that they will be in touch to arrange an assessment either at my house or another destination. I did state on the form that they have received my ds1500 form. X anita x

[anita27972]

Thanks for that information ladies im still waiting for the form so I will keep you all posted xx

[Lynnq]

Hi anita. I was told that once you are given the DS1500 you come under 'special rules" and do not have to fill out forms in the same way.

I wad referred to a benefits adviser she asked me if i ever had days when i felt unable to walk a certain distance. (Think it was 50metres) and that was it.

Some days i can walk quite well, others i struggle to get out of bed......she said they were only interested in my 'worst' days. I did not fill in the original form i was sent as she told me that DS1500 covered all of that........

[Lakeslover]

My husband has just been awarded pip under special rules. A lady from Macmillan came to the house and completed the form for him.

[doodlecat]

Anita,  I filled in a form before approaching my GP for DS1500.  Have you already completed a form? If not it is normal.  I had help with the form from Macmillan CAB.  You must fill in the form answering questions as on your worst days, not average.  I would also advise that you do not fill in forms on your own.  My Dad did, despite me telling him not to, and he was turned down.  He is 84 and also has incurable cancer.  I am convinced he filled in the form saying he could do everything for himself (he can't) and DWP were left with no option but to decline his application.

June xx

[anita27972]

Hi everyone I called the dwp the other day about my pip and they said they have spoken with my oncologist and received my ds1500 form they are now sending me a form to fill out because they want to know how my disability effects me. Is this normal xx

[chilli]

Thanks Lulu, I am in the process of applying for DLA for my son. I have also managed to get a DS1500 from my GP and have sent it off - fingers crossed ! Will let you all know how I got on ! Hugs, Chilli x

[Lulu34]

i haven't applied for DLA/PIP yet as my onc told me i was too well.... but my GP will support me saying i have mets and nobody can guarantee my life expectancy.... my onc says im too well but cannot guarantee i wont die within the next 6 months which is what the special rules limit is now i think.

chilli with respect of your son.... you can apply for DLA for him in his own right..... i have been applying for DLA for my daughter since she was 6 as she has dyspraxia and other special needs which means she is isnt safe nor can she do things for herself without continuous prompting.... it is time consuming and real old pain in the @ss. but she does need more help and care than other people her age.

[Nythejan]

Hi Chilli,
My Macmillan nurse unblocked my application by using "special rules" even though my prognosis is longer than 1 year. Their view was that nobody knows when their final curtain comes down and we need to money now to use while we are able.

[Angelfalls]

For DLA, your work situation was irrelevant, so I assume it should be with PIP. Good luck!

[anita27972]

I have recently applied for PIP and my doctor completed the ds1500 form I have also been advised that they have contacted my onc. I don't know if I'm entitled to anything. I still work but have had to reduce my hours to part time because I get very tired, so that will more than likely go against me. To be honest I'm not holding out much hope.

[Angelfalls]

Helen, If you can get your GP / onc to sign a DS1500 for you, you will be exempt from attending the medical board interview.

It is so unfair that some of you are having problems getting a DS1500 signed. This disease is so unpredictable and our situations can change in a heartbeat. What is wrong with your oncs?!! I didn't claim it for the first 5 1/2 years after my diagnosis of mets, as I was still working and didn't know anything about it, but when I needed to, my onc actually apologised that she hadn't sorted it sooner!

I really hope you can find a more sympathetic health professional who's willing to help you get what you're entitled to. Good luck!

[2catlady]

Hi,hope you don't mind me adding my story. The Macmillan finance advisor filled in a pip form for me in August last year,6months later I'd been chosen to go to a medical board to prove I was ill. I was on holiday and had to change it to yesterday. I couldn't make it yesterday as was ill . My hubby rang them and they were very rude and nasty with him. They told him because ive cancelled twice (once I was on holiday not in country and yesterday Was too ill)they were sending my file back to work and pensions and I'd have to deal with them and tell they why I was cancelling. I've now told hubby I'm not even bothering to apply ,I have enough to deal with without proving I'm ill and dying to a bunch of insensitive people. I've worked all my life and payed tax &NI and won't be around to claim my old age pension.
I've got bone mets .I know they are trying to keep benefits bill down, but really would cancer sufferers make up pain stories . Our country has gone mad.
Sorry for my rant,just needed to vent some steam ,Helen xxxx

[chilli]

Thanks Ladies for all your tips and comments,

I have been in touch with my oncologist and asked her about the special rules section - she hasn't responded which I'm taking to mean that she doesn't want to fill out the form. So, my GP is next on my list, hopefully he'll do it. I also got back in touch with Macmillan again. I spoke to a very helpful woman there who told me to request the whole file together with supporting evidence from doctors etc. from the DLA. They are legally bound to supply it to you. This means that I can analyse everything they've written and scored in my appeal. She also suggested the special rules and ds1500 form saying that it was the most straightforward way of applying and the 'terminal' diagnosis can be interpreted in many different ways once you have metastatic or secondary breast cancer.

Dunno about anyone else but I've found the whole process extremely exhausting - but I guess that's the point. Why make it easy for anyone to apply when you're trying to get people off benefits   ?

Will let you know how I get on, Chilli xx 

[Guest user]

Im so sorry to hear that you are going through all this crap... I also get DLA but it was originally for heart and arthritis problems... Now they are changing it all over to something new I hadn't got a clue what to do when I rang them.. Apparently all I needed to get filled in was a DS1500 form to be filled out by my GP which she did straight away...Any medical professionals dealing with you can  fill it out.. I even had a phone call from the DLA apologizing for bothering me and they are just transferring it all over to the new scheme

i wish you luck hon. xxxx

[Smartie]

Hi Mrs Blue, sorry haven't logged on for a couple of days! Lucinda is correct you are automatically eligible if you have PIP awarded with the mobility element included. The blue badge does come from your local council and you can apply on line and just need to send in a photo and a copy of your PIP award letter - no assessment needed.
Smartie x

[lucinda]

Mrs Blue you are right that this is a different scheme, but you are automatically eligable for the badge if you are in receipt of DLA higher rate mobility award. You can still apply witout this but have to fill out a questionnere and get assessed.

[mrsblue]

Hi Smartie - good that you have success re DLA (or PIP as it is now).

I just wanted to ask a question about the blue badge: I thought this was a totally separate scheme, administered by a local council rather than DWP.  Is this so?  And did you have to answer more questions or have a mobility assessment to get your badge? - assuming we're talking about DS1500 Special Rules.

[Smartie]

Hi Chilli

I have had mets for 8 years this year and never claimed any DLA but was persuaded by a friend who works for the DWP that I should. I did so in December but as the other ladies have said I did it under the special rules. My GP didn't want to fill in the DS1500 form as she said I looked too well (!) however the Macmillan nurse at my hospice was much more helpful and as my current treatment (Capecitabine) is classed as palliative now there were no problems in getting the PIP payment through in about 3 weeks. You do have to apply by phone but the advisor I spoke to was very helpful and there are only a few questions to answer (make sure you answer them as if you were on a bad day not a good one). I had a copy of the DS1500 myself and sent it off directly.
I have since applied for a blue badge and a disabled railcard all of which has helped enormously. The special rules route does seem to be the way to go to make things easier, us secondary ladies have enough to put up with without money worries and transport issues.
Good luck and do check out the DWP website, it is quite informative.
Smartie x

[nicky08]

Hi Chilli
I had my re application turned down last year, having received DLA for the previous 4 years. I filled in the forms myself and, as I have a heart problem caused by chemo, I put all that info in as well including the fatigue etc. However none of this was taken into account even when I spoke to an advisor at the DWP about my day to day problems. I then spoke with the MacMillan/CAB advisor at our local hospital and they said to try to get another DS1500 signed. My GP was able to do this and, as I had then just been diagnosed with further spread, he was quite willing to do this. This seems to be the way to go unfortunately as just filling in your worst day scenario on the DLA forms doesn't mean you will get it. BTW because I also had to give up a new job because of the change in treatments I now claim ESA which I am entitled to as my NHI contributions were up to date. I'd rather be in a position of working for my living, as I'm sure we all would, but unfortunately secondary BC doesn't always allow us. Good luck with your appeal but it may be worth getting a DS1500 signed as there's a lot of agro otherwise.
Nicky x

[Mema23]

My Onc refused to sign the ds1500 form, he said as I only had bony mets, I had a long life ahead of me yet! Obviously that's great if I have, but I bet I don't get to 67 when my pension is due to start and it would have been nice to have been able to claim some money. I am waiting for the Pip form to arrive, I will fill it in as I am on my worst days and see how I get on.

[Lynnq]

Hi Chilli

I received the forms and wasn't sure how I ought to answer the questions. I rang macmillan who told me that i would probably have to apply under the 'special rules.'
I put it off for a while but eventually i asked my ONC if he would fill out a DS1500 form for me. He did it for me there and then....he gave it to the BCN who was also there. She made an appointment for me with the Benefits Adviser who visits the hospital twice a week. I saw her a few days later and she had received this form from the nurse......I never actually saw the form.

The adviser asked me a few questions, she did stress that I should answer the questions based on my WORST days. I have secondaries in my bones And am on LETROZOLE. I ache a lot, but sometimes i do okay and go for a walk, shop etc. other days it is an effort just to get up, showered and dressed etc....sometimes because of my aching joints, others because i don't sleep too well any more.
She filled out a form there and then. It took about six weeks to come through...it was over the Christmas period.....i have had the mets for over a year and claimed about 3 months ago.......

[Porkie]

Chilli

I have had bone secondaries for two and a half years. Because I was continuing to receive money from my employer I did not apply for DLA or PIP as it is now until last November - more than two years after my mets diagnosis. Whilst it was hard I asked my oncologist if he would sign a special needs form - he was happy to do so. I like you can walk reasonably well most days but sometimes my back and neck play me up so much it is hard but I had no problems at all with the claim - receiving it about 3 weeks after. So I would ask for a form (I didn't even send it in ! just said I had a copy). Good luck - I think we secondary ladies deserve this given in many cases we will never receive the pension that we have paid into for years. xx