Hi everyone. I do wish everyone a happy new year, now knowing that we have to find happiness from miniute to miniute rather than planing so far ahead!
Anyway, can anyone help me with this problem, please?
I was diagnosed at the end of August, had double masectomy with removal of most lymph glands on right side by the end of September, and after a few weeks of recovery have started my chemo. Am having six cycles of fec/tax with Herceptin for a year and then hormone treatment to follow. As you know it’s not nice, but my prognosis is a very good one so I try to focus on that rather than how bad some days can be. I don’t succed much but there you go!
My lovely breast care nurse urged me to apply for disability living allowance and the equally lovely Macmillan welfare rights adviser helped me with the form and submitted it for me. She was very confident I would be elegable for the benifit due to the severity of the op and length of treatment to follow etc. I recived a letter saying my application had been recived and a few days after a phone call from someone from the department who grilled me for a hour on what I could and couldn’t do etc. At the time I was only a few days into my first chemo and things hadn’t really kicked in! On christmas eve I recived another letter saying I had been turned down for the benefit completly so I guess I was too cheerful on the phone despite laying on the sofa cuddling a sick bucket through our conversation!
We are a very low income family so this benifit was to be a life-line for us until things improve and I was devestated to be dismissed in such an offhanded manner. Has anyone else been in this situation and could tell me thier experiances or help me with an appeal? I had my third chemo yesterday and am very down at the moment and could really do with some help and advice. A couple of people have told me that they turn you down as a matter of course now which seems so unfair! Part of me doesn’t have the strengh for this at the moment but when paying the rent and trying to keep warm is so hard I know I have to.
Sorry for the long ramble and spelling mistakes. Any advice welcome.
Good luck everyone xxxx
Get back in touch with Macmillan advisor, and she can help you appeal. They really don’t play fair - you have to tell them how you are at the absolute worst point of treatment - ie, can’t get off sofa, can’t cook, can’t take food out of oven… and almost overplay it - or you won’t get it. It isn’t fair, and it feels like lying, but that’s the way the system is set up.
Your Macmillan advisor will know what steps to take next - so go back and try again - throw everything at them. They really should be more clued up on what chemo means - but I do feel the staff are more trained to look for reasons to turn you down, than to help you get the benefits you are entitled to.
Sophie xx
Am sure that most people don’t get DLA with a primary cancer but get it with secondary cancer.
its not based on whether its your primary diagnosis or not but how debilitated you are and how long its likely to last… if you are likely to have a disability for at least 6 months then you can apply… so if you are having numerous surgeries and treatment that will cause you a significant disadvantage then you can apply.
there is a special rules section for people who hare diagnosed with secondaries which doesnt involve all the form filling and is usually a guaranteed payment unlike with other conditions which have to go through the assessment process.
one thing i would say is base it on your worst days not your best days and also on the frequency… eg if you have one bad day but 6 good days afterwards then you probably wont get it based on the fact that your problems are infrequent… but if you have six days feeling like crap and one day feeling fine then you are more likely to get it.
do appeal as they frequently turn down people on their first application, the macmillan advisor should be able to help with the appeal… and they are a good guide to whether you should apply or not… if they think you have a good case then i would definitely pursue it.
Lulu xx
Thank you all for your advice. I will speak to my McMillian advisor tommorow and take it from there. I feel so much worse now than when I spoke to the man who rang me and the next few months look to be a hard slog, so maybe I will get somewhere? Just reminds me that nothing to do with this is ever easy! As always on this site your support is invaluable. Thanks again and good luck with your own strugles.
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lexie - there’s a great website benefitsandwork.co.uk which is independent and will help you ‘work the system’ to get Disability Living Allowance, Employment Support Allowance, and or Incapacity Benefit. From what I’ve read I think that intravenous chemo gives you automatic entitlement for some benefits. There’s a self-assessment test that you can do to find out.
I think that McMillian advisors are a little to eager in advising primary BC people to claim DLA and giving people false hope.
Aside from the special rules (for the terminally ill) the criteria for getting DLA is to have had DLA needs for 3 months before claiming and for the needs to expected to last for at least a further 6 months. Unfortunately it doesn’t made any difference how much care is required if it’s unlikely to extend after those 9 months.
Given what you say, I don’t think that an appeal is worth pursuing as hopefully after the chemo you should be feeling stronger. It would be nice if there were a more appropriate temporary benefit for the duration of primary cancer treatments (fat chance of that happening though!).
Certainly you should be claiming ESA (Employment Support Allowance) and because of the chemo, this will automatically put you into the support group.
Good luck with it all and sorry not to be the bearer of better news.
Roberta
xx
sorry cant offer much help but i was under the impression that hainvg chemo didnt allow you to apply for DLA because it’s short term effects and doesnt always stop you doing things - however good luck if you are being supported in applying for it, hope you are successful x
Hi, It “does not matter” if you have a primary or secondary cancer. The issues are around your ability to care for yourself and get around.
I am going through a tribunal for the period I had chemo and some months after approx 10mths via my local welfare officer we are hoping for a fixed period award.
My chemo and treatments Mast. and lymph node removal, Taxotere and Radiotherapy meant I had excrutiating joint pain, swelled to a point I could not walk etc etc.
I was refused by the DLA dept (non medic) making a decision twice.
I asked for an appeal and failed that.
Finally, Welfare officer of local council took on board the case and we go to the tribunal in a few weeks time.
I applied a year ago and felt I could not justify asking for any potential payment past Nov. although the welfare officer does keep reminding me there are various levels.
All that said I know of women on their chemo who coped very well walking and with their treatment and told me they applied and got it awarded with ease!!!
I do think the DLA is not appropriate benefit for people with diseases such as cancer, heart etc… The government really should look at a separate award, where people dont have to jump through hoops…if only I could have at the time!!!
Good luck folks,
I was turned down for dla because i can walk and get out they say the benefit is about not being able to walk and to hell with whether you can eat etc. anyway i fill these forms out for a past time for my tenants who need support most of them get it and they are alcoholics now how unfair is that!!!
Really sorry to hear about your troubles. I have been told by advisers that they often turn it down the first time or if money is short in a particular month so it might be worth trying again. But I’ve also been told that some advisers get confused - because of a secondary bc diagnosis a DLA can be submitted under the special time frame for a quick response but the diagnosis does not mean that the DLA will be granted - I’d been encouraged to apply by GP etc but when I found out the criteria were being able to walk 50m and cross the road unaided have decided that my health is too good at the moment too apply even on a bad chemo day (am glad I’m still pretty active but could do with the money too so a mixed blessing…)
Hope you get things sorted - this is an added stress you could do without
Fran
Hi I applied for DLA (mastectomy, lymph node removal, herceptin, and hormone related) during the treatment I could not walk and swelled too. Incredible joint pain etc
I applied initially myself and was turned down, I then appealed again turned down.
I appealed again and again turned down. A year later I attended a tribunal. I was awarded a fix term at the higher rate mobility and middle rate of care. The judge reminded me the benefit is not payable just because you have a medical condition, it means you must have signigicant difficulty in mobility and with care.
Macmillian welfare rights officer helped me with my case for the tribunal as well as contacted ESA dept to sort my benefits a year ago. At the time the esa dept. a year ago put me in a work related catagory. The welfare rights officer contacted them and I was duly changed catagory.
Hope this helps,
goodluck
Jo
x
I applied for DLA when I was undergoing treatment. The DWP contacted my GP about my health and I was turned down as he said I wasn’t ill enough. When my husband questioned another GP at the surgery about it he was told you have to practically lose the use of both your arms and your legs to get it. My husband replied he thought it was funny that there were so many fit looking people in the waiting room who were on it! As for me not being ill enough, I had 4 months of being bedridden on Taxotere, where I was only going out for hospital appointments. At the end of Taxotere I spent a week in isolation. If that’s not ill enough, then I don’t know what is.
I have a child with a disability and my best advise is to go to your local citizens advice i say this with experience! They will help you fill in forms its worth it. CAB said to us don’t attempt to fill them in yourself, hope this helps jx