I just wondered if anyone with secondaries has had their application for DLA turned down ?
I just have and I’m completely devastated. The extra money was paying for my son’s (who has suspected ADHD so a challenge to deal with at the best of times !) nursery fees. I went through the form with a Macmillan benefits advisor who told me to put that my walking was ‘reasonable’, which has apparently gone against me. I’ve been told that as I can walk and prepare a meal for myself, I don’t qualify for mobility or care needs. I originally was diagnosed with secondaries after seven years in remission. I had tumours in my liver and sternum, was treated in 2011, then had further spread at the end of 2011 and 2012 to spine and lymph node. I am currently classed as ‘stable’ but continue to be on hormonal therapy and zometa as well as zoladex. I’ve had pneumonia twice and have had countless chest infections due to an operation to remove part of my sternum in 2011 (now makes me susceptible to infections). I put all of this down in the form as well as the peripheral neuropathy that I have in my hands and the chronic fatigue that I suffer from daily - and they’ve still turned me down !!! I’m going to appeal but am not sure what else I can say that hasn’t already been put in the form.
Has anyone managed to successfully appeal ? Or did anyone manage to get their onc to sign a form under the ‘special rules’ section ? - am now thinking that this might be the only way. Would be grateful for any help you can give me. Many Thanks, Chilli x
Sorry you’ve been turned down but definitely appeal. I didn’t know I may be eligible until about 3 years after diagnosis when someone on here told me to go for it. I had retired from work on ill-health grounds and had a company pension by then. Rang Macmillan and they said I probably wouldn’t be eligible and never offered any help. Anyway, I decided to apply myself and went to see one of the GPS at our surgery for a prescription and casually mentioned the form and special rules element. He said it would be no problem and indeed it all came through in a couple of weeks. That was 3 years ago and I recently had a new form to complete. That was ok, too. Rumour has it they turn down the vast majority of initial applications and make people appeal. Allegedly. All down to money but it so often seems the wrong folk are hit most.
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…
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.
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 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 :smileyfrustrated: ?
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.
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.
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
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
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
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. ?
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 ?
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.
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.
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.
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 can anyone help me with this. I’m still waiting to here from pip and waiting for my medical assessment as apparently I am not ill enough. I spoke to a nice macmillan guy at my local hospital who said I may be entitled to working tax credit because I have had to go part time. He then referred me to the macmillan local welfare lady who was so unhelpful. She basically said im not entitled to it because I don’t get any other type of benefits grrrr they make everything so stressful. It asks on the form if you are disabled. Does anyone know what they class as disabled. I’m so upset after speaking to this lady. She would not even help me with the pip and said I will just have to wait and it takes 6 months. Any help would be greatly appreciated x