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.
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
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!
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
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
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
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
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.
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
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
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.
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.
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