Disability Living allowance

Hi

Just wondered if there is anyone out there who has managed a successful claim for DLA? I was diagnosed in Nov 07 with Grade 3 IDC, 5/11 lymph nodes affected, had mastectomy and full node removal,have completed 4 x fec, 20 rads sessions and just started 4 x Tax (2nd one next week), to be followed by 17 x herceptin.

During my Fec chemo I had a visit from the MacMillan benefits advisor,who advised me that there was no way I would qualify for dla, and that there were no other benefits that I could claim. (I’m already getting child tax credits and SSP from work).

However, by my first tax, which knocked me for 6 and I ended up in hospital, I was so mad at the number of people living in my area who are claiming everything left right and centre, and who have never worked - that I thought stuff it - I’m applying anyway, I feel like sh*te, it’s a struggle to get to the shops some days, and when I get there I can’t remember what I went for…so in a fit of temper I sat down and completed the forms online and had hit submit before I could change my mind.

I’m not even sure I remember everything I put on the form.

I have now received a letter from them saying they can’t make a decision without consulting my consultant (and no, I haven’t advised anyone else - BN, consultant, GP etc) of my application - and I’m pretty certain the consultant won’t back me - she’s only seen me twice since my original diagnosis and always comments how well I’m doing lol.

I’ve done a quick search on here and most claims seem to relate to people with secondaries - I just wondered if ayone with a primary diagnosis had had a successful claim?

Margaret

Hi Margaret,

I got the lowest DLA for personal care for two years and it stopped in March.

If you do get an award tell the tax credits as they will then automatically give you a disability element in your tax credits and if you don’t get DLA ring them and they will see if you meet their criteria for the extra element - go online and look up their criteria before phoning them. Even though my DLA has stopped they still class me as disabled and I still get the disabiliy element, though its not as high as when I was on DLA.

Good luck.

I was dx March 07 had WLE and node clearance, followed by chemotherapy time 6 and radiotherapy times 20. I was er+ and pr + nodes were clear by tumour had made own blood vessels and there is possible lympho-vascular invasion. I am on monthly zolodex implants and letrozole for at least 5 years.

I had a successful claim but I had to appeal. I was so ill when I was having chemo that I could not even dress myself. A doctor was sent to my house who decided I was not entitled to it, however I appealed as I thought it was ridiculous as when I was being sick etc there was no way I could even get out of bed, and that was with the anti sickness medication. I was awarded the lowest amount of the care component of the DLA.

I would say that if you are refused it, appeal because you are very disabled by the treatment and the physical and psycological effects that the treatment and the illness has on you. I could not go out of the house for ages and even now still have panic attacks I am still often very tired and cannot cope with lots of things that I found easy before my dx… I am in effect a different person with much less confidence and loads of anxiety and depression.

I was thinking about this the other day and it is not too many years ago that people stayed in hospital for their chemotherapy and a woman I know said that her mother stayed in the whole time she had radiotherapy in the 1990s, so think how much money they are saving now by treating us as day patients and leaving us to suffer the effects of the chemotherapy and radiotherapy at home with family or friends caring for us. I do not know how I would have managed if friends, in particular one friend had not looked after me. The amount that is paid as Disability living allowance is peanuts (mine was £17 a week) in comparison to what it would cost to provide 24 hour nursing care. I am not saying that I would have wanted to stay in hospital but I was definately ill enough to have warranted it.

best wishes
Dawne

Hi Margaret,
I had lumpectomy, node clearance, 6 chemo and 15 rads now on Tamoxifen. Off work for 10 months just went back last week. After ssp from employer ran out after 6 months I went down to the jobcentre who now seem to deal with everything. They gave me a number to call. I had a very lengthy phone interview which was ok and was informed a few days later that I qualified for Incapacity benefit. They had also applied for housing benefit on my behalf, which I qualified for also. I could no longer get working tax credit but still got child tax credit. I have now applied for a back to work benefit which is £40 per week. The criteria for this is more that 12 weeks on incapacity, work more than 16hrs and earn less than 15k. I hate scroungers also but i,ve worked and paid taxes for 24years so why not. I,m not sure what the criteria is for DLA.
lots of love Andrea x

I was diagnosed 13 years ago and must admit that I didn’t think about claiming DLA at that time. I had my surgery, chemo, radiotherapy followed by 10 years of tamoxifen, etc. I was off work for 10 months as the chemo totally wiped me out but once my treatment was finished I returned to work, went to the gym, resumed ski-ing, walking, dancing, etc. etc.

However, I was diagnosed with secondaries in 2004 and was advised by the Benefits Enquiry Line (when I rang about my incapacity benefit at the time to apply for DLA). I get the higher rate of both mobility and care DLA because it’s in my spine and liver.

I think one of the criteria that they look for when awarding DLA to people is that the condition has to be ongoing for a particular length of time. I know that my condition won’t improve significantly which is completely different from my primary diagnosis.

I think Margaret is right - most people with advanced cancer will be awarded DLA because our condition will not improve significantly and it affects our day to day activities in lots of different ways. It’s the chemo and treatments that incapacitates you at primary diagnosis.

Pinkdove

This has been discussed before so worth revisiting old threads.
Special rules - DLA is for when you have secondary spread and not expected to live for more than 6 months although on the form it says it will be reviewed after 3 years.
‘normal DLA’ - my understanding is that you have to have had the ‘condition’ for 3 months before you can claim and be expected to have it for at least a further 6 months at claiming. So not always much use when you have chemo, surgery and rads as that usually only takes about the 9 months and i feel we should all be entitled to something as I couldn’t work on taxotere but I was Ok for some of the time on other chemos to work part time.
It is a rotten system - but look back on earlier threads as there was some really useful info there.
What makes me angry at the moment is the pension fuel allowance given to all pensioners regardless of wealth when so many go on holiday for those coldest parts of the winter and get their £200 or is it £300 and yet for people like me with very advanced/terminal/palliative care cancer feel the cold really badly and get nothing but the £60 a week which is supposed to pay for ‘personal care’ ot for heating and I need my heating on and now have a £200 bill excess to pay because of and we will struggle to find this money.
The whole benefit system seems very unjust and sometimes it feels more like who you know and how to fill the forms in correctly to satisfy the powers that be to get the benefit rather than actually deserving it and it being fair.
To me, it feels it is highly weighted against primary cancer treatments and yet they can make you so ill and incapable of looking after yourself let alone any dependents.The system stinks - I’ve got several friends who work in the Benefits Agency and the Customs + Revenue Dept (or whatever it is called). I feel so sorry for them - it really needs a whole overhaul.
Sorry - if I’ve upset anybody but it just is one more hurdle in my life that I don’t want and don’t see why others in similar situations should have to fight for benefits.
Kate

Hi Kate,
Yes the system is all wrong, I think all benefits should be means tested **edited by moderation team***

I think that they make it hard for people by making the forms really long and confusing. I was getting incapacity but had to go for a meeting with them every month as you get a letter saying that your money will be stopped if you dont show. I had to take my pay slips in every month to the council office for my housing benefit. What would have happened if I,d been too ill to leave the house ??
Anyway rant over !!!

Best of luck to you
Love Andrea xx

Hi Margaret

As your situation has changed it may be worth contacting MacMillan again. Or you can always give our helpline a ring as they should be able to point you in the right direction to get advice on benefits. As you say it can be a nightmare but we are here to try to help.

Best wishes

Ann

Thanks for that Ann

Just came across this thread and althought I do not intend to apply for DLA or any other benefit - I know I would not meet any of the criteria, I have been advised to consider applying for a Macmillan Grant. I’ve been lucky enough to be fit enuff to return to work 2 weeks after my WLE and I’ve taken 2 hours a day off during my rads. Over the past 3 and a half months I’ve struggled to make ends meet but it’s all down to just little things like buying different types of food … I used to come in and cook a proper meal every night but since I started rads I’ve bought more of the ‘chuck it in the oven for 30 mins’ types of food and this is obviously more expensive. Silly things like my PJs were all vest top types and all had lace bits round the neck or straps which irritated my skin so I’ve had to buy new ones. My washing has increased too cos I am applying cream to the rads burns etc.

Is it worth me applying for a grant just to get me back on track ?

Hi Lilacblushes,
I was told that a Macmillan grant would have to be for a specific purpose,ie, 1 or more big energy bills or if your washing machine, fridge or cooker broke down they would replace it for you. My Macmillan nurse told me that but its still worth a try.
Love Andrea x

margret can i say go to the citizens advice and get them to fill in the forms for you ,i went to mine when i claimed and they went through the form with a tooth comb,i actually had to go before a tribunal and passad on not being able to tie a knot in a bow !! at the time of my claim id had a d hhs medical and they said i was capable to work ! now id had a mastectomy chemo and rads and had severe lymphodemea in my arm and they said i could work !!now i cant lift anything with this arm and am in constant pain ,especially in my joints,but my money was stopped ,i had a fight i can tell you but have now got the lower rate of 17 but its not very much i know but it does help a bit ,keep on fighting and remeber to put down exactly how it affects you on the worst days ,get someone who knows what they are doing to fill it in ok hope this helps lynn xx

Thanks for that Andrea - that was how I understood it too, the energy bills have been the biggest problem but as I am on a pay as you go meter I have no actual bill to show.

One thing on the finacial side that really does annoy me is that getting cancer does not entitle you to free prescriptions. Within 2 weeks of coming uot of hospital I bought a 4 month pre-payment card as it looked like I was going to have a rough ride of it infection wise. Of course once I had shelled out the money for that they reduced the cost by half and I didn’t need any more medication since then!

I got a Macmillan grant to help with a couple of bills, mortgage and gas bill because work stopped paying me SSP forgot to tell me, I did not notice, had other things on my mind and was getting half pay anyway. This resulted in me going nearly 2 months with no money at all because it took the DHSS so long to decide if they were going to pay me anything. The grant was for £350 and my breast care nurse recommended me for it, she is also a Macmillan nurse and it was a godsend because I did not know where else to turn at the time.

Best wishes
Dawne

I’ve not actually had a reduced income as I have actually only taken 2 weeks off for surgery and leave early for my rads and my employers are fantastic about not reducing my pay. … but I am not highly paid and although my son is good at giving me a realistic amount each month I do tend to just get by each mnth. Add in the silly extras like more washing, heating and some convenience foods etc and my budget just gets stretched to the max. I just seem to be juggling money around at the moment trying to get everything covered. It’s just one more struggle to have to add to the list.

thanks for you comments tho … I still doubt that I would be entitled to anything but might be worth asking, the worst they can say is no.