Just wanted to post this link to the Macmillan information about benefits and financial help. I know lots of you will already have seen it, but there seem to be some new members on the thread who perhaps haven't http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Financialissues/Benefitsandfi...
Breast Cancer Care is also a member of the Disability Benefits Consortium, a national coalition of over 50 charities and other organisations, committed to to working towards a fair benefits system. As part of the Consortium we've just launched a survey to find out more about how disabled people (including people affected by breast cancer) are experiencing the benefits system right now. The results will inform the Consortium's campaigning work to influence Government policy. Lots of you clearly have experiences to share, so if you'd like to fill in the survey, please do so here http://www.surveymonkey.com/s/disability-benefits
with best wishes to you all
I'm really pleased Tina that it was all so straightforward for you. It just. It seems really hard that we have to be put through these hoops. I just loved your reply to them - but it is all so true, if nothing has changed maybe that is all they want to know! Your story is very similar to mine - I first claimed in 2006 with 2ndary bones only! but at the time chose not to ask for mobility. 2 years later when things got worse I wrote and asked, thought I had nothing to lose LOL and was amazed when not only did they award the highest rate, but backdated it to the Aug.2006 claim. There is just no real consistency in the way they deal with claims though.
Thought I'd share my recent experience as I didn't follow any of their stupid requests. I was diagnosed with primary and secondary (bones only) in August 2006 and on advice of my palliative nurse, applied for DLA under special rules for highest care and whatever mobility component I could get. My GP gave me my DS1500 and I was awarded the highest care component and the lowest mobility. In 2008 I had a lot of pain in my hip, couldn't walk without a stick and needed radiotherapy. My palliative nurse wrote to the DWP and they awarded me the highest mobility component with no input from me or any of the doctors, nor a new DS1500.
Earlier this year, my award came up for renewal. I was not in the best of moods and basically filled in the form with as little information as possible, stating that they already had all this information and unless they knew something I didn't, Stage 4 cancer is still incurable. The bit where they asked for a DS1500, I wrote 'you already have this and nothing has changed'. I was awarded both components at the highest level again within a few weeks. I had expected to get a narky letter or something but I think they got the message...
Glad to hear you have been granted DLA again, Alison - I, too had to re-apply last year, as my onc laughed when i asked him to sign a DS1500 (my GP had signed one in 2003). Nice woman from the DWP rang to discuss my application with me, and urged me to review whether I needed support at night (I don't), so she could approve both elements at the higher/highest rate. I did get awarded mobility at the higher rate, and home care at the middle rate (no night care needed - yet). It was very stressful to have to go through the full application process, but I fear that the replacement for DLA will be even more difficult for us to receive - watch this space, I guess. xx
Hello, just thought I'd share my recent experience when reapplying for DLA 3 years on. Having originally applied with a DS1500, I approached my onc for another DS1500 but this time around he refused, on the grounds that I have bone mets only, ie not in a life threatening organ, so don't fulfil the 6 month criterion. My GP also refused, so I applied under normal rules.
The way I filled the claim form in was to virtually ignore the tick boxes and to just provide lots of information in my own words, mostly on separate sheets of paper that I just attached to the form. I found that many of the questions on the form really weren't relevant to bone mets. Anyway, I think this approach worked. I also asked my GP for a letter in support of my claim, and sent her a list of ways in which the bone mets, treatments and medications affect me. She provided me with a letter which basically just referenced my list, which I included with my claim. And I think that with the DLA you have to show how the award could or would make a difference (even if you don't already have any help or don't even intend to access any help), ie how having the award would help, not just say how bad things are. I wrote things like I needed my Motability car in order to attend regular secondary support group meetings, as they were in another town and public transport was too tiring etc, and I needed to attend these meetings for my mental wellbeing. Without the car I wouldn't be able to attend
I was really worried that applying under normal rules I would have to wait months for a response, but actually once my claim form went in I heard back very quickly, and was awarded higher rate moblility as before, with the care component being downgraded to lowest rate. To be honest, I was surprised to get anything on the care side without the DS1500, so guess my claim had been dealt with by someone with compassion!
you need to be in receipt of the higher rate of mobility allowance to apply for a car.If you go onto the mobility web site you will see the list of cars available.There are all makes,and types.Many you can get without making a down payment and some you may be requied to make a small deposit.Depends on the make and model you choose.DLA will then deduct the amount of the mobility car from your payments and send it directly to motability.If you go onto the motability site it explains how everything works.
You do not have to be the driver youself so don't worry if you are not up to driving.You can nominate another driver and they automatically insure it for 2 named drivers,
I have had my car for 12 months now, and it was great not to have to pay for the service,the insurance and the tax.It is the only way I could afford to run a car and I could not get around without it.
hi ive just got dvla u norm get it for 3 yrs it shld tell u on the paper work im looking into a car but i drive manual but also like u im on chemo so im not going to get one yet it will sit out side while im on chemo so im gona wait to sept when new plates come out they look well posh lol tc laura
My friends husband had a brain cyst a few years ago and is on DLA and is still getting it. They just keep reapplying for it every couple of years.
hiya girls, iv just been given my blue badge, and im in a bit of a haze about getting a moblity car, do i get an automatic/ manual? at the moment im on chemo and the weakness in my legs is bad, but when i stop chemo it will go back to normal, im hoping so...And i havn't asked how long iv got,so is is worth it? just found out at the end of may it had spread, got diognosed in june 2010, spread to lungs, liver,lymph nodes, so head is full of questions, sorry for being a muddle head....who would be the person to ask....ziska2
Hi my gp done the special rules forms I also have sec to lungs and arthritis you have to put it down on form how she is on bad days cannot walk 100 yards and needs help I know I do some days my oh as to take me to loo otherwise u won't get it tc Laura
My sister isn't in contact with any MacMillan staff this time around. She has been refused DLA under the normal rules but now I have seen her application form and what she has said it is no surprise why they have refused. I have since spoken with her oncologist secretary and explained this and she will make enquiries and come back to me later this week.
Having now explained things a little to my sister, it may be that she accepts that this is the only way forward, to claim under special rules.
Would appreciate any advice.
It is difficult to come to terms with a diagnosis of secondary BC. I was advised to apply for DLA under special rules by a McMillan Psychologist. I was told that I was eligible under special rules because no one would be surprised if I died from cancer within 6 months, this is not the same as a prognosis. I have been on DLA for 2.5 years, there are other women who have had it for a lot longer and are still going strong. My DLA will be reviewed at the 3 year point.
I encouraged my sister to apply for DLA as she has multiple secondaries, (breast,lung,neck but not sure about bones)but she felt uncomfortable claiming under special rules (incase it jinx'd her) so completed the normal forms. She has today been refused on the basis that she can walk 100 yards, needs to assistance for washing and dressing etc.
I did speak to the onc secretary (in confidence)and explained they may receive correspondence from DLA (DWP) and asked them to complete regarding my sister's condition. I'm not sure whether this has been done but how else can I go about getting her help with this?
She does have Arthiritus in both her knees and walking is difficult for her but they said she can walk 100 yards albeit, slowly, blah,blah.
I should say at this point my sister is in denial but that is her coping mechanism and I do have to approach this carefully and sensitively.
Who are the 'specialist benefits officer's' to which you refer to on here? Where are they based?
Would appreciate any help/advice please.
Hi Dawn, Just thought I would let you know that thanks to your advice to look at question 4 and think about who to put down I have had a letter this morning to let me know that my DLA is staying the same.
So to everyone who gets the letter to say they are looking at the DLA you are recieving, dont panic, put down the person you are most in touch with and who knows you beast.
Dawn, I have been reading your posts on other threads and send you all my love and hugs. xxx
Lots of love Roz xxx
Hi Rozvi, That's marvellous news. She will have to provide a letter to say that you are ill etc. etc. but the advisor will sort that out for you, so you shouldn't have a problem.
Hope you are feeling well today along with everyone else. Take care, lotsa love, Dianne x x x
Hi Jodie 1,
Thanks for ur reply, just come back from my doctors to ask her if ok to put her down as the person to best tell them about my condition, and she was great, said she will do whatever it takes, which makes me feel a lot better, will let you know how it goes,
Keep safe and well all you ladies and gents.
Hi Rozvi, Good luck with the forms, hope it all works out well for you. I know what you mean about not wanting to tell your family how much something is affecting you. Good luck with it and let us know how you get on. Take care of yourself.
Hope everyone is well today. Lots of love, Dianne x x x
Hi dawnhc, Thank you for responding and thank you very much for the advice, I didnt even see question 4 although I have looked through the form quite a lot, ( I must be going mad, or getting old) Yes I do get the highest rate on both and would be lost without it. I have got a great doctor so will put her down. Will let you know how I get on.
Jodie1. Thanks for your response, I will follow dawns lead and hope all turns out ok.
It is just good to talk things over with people that are not so much involved, I dont mean that in a bad way, but sometimes you dont want to show your family how much things affect you.
Take care you all.xxxx
Hi Everyone, Had a great week with my parents although my poor bones are suffering today with all the driving. Still, it was worth it as I saw lots of old friends.
Rozvi, hope you get the form sorted out soon. Just follow Dawn's advice and you shouldn't have a problem.
Marina, hope you're getting somewhere with your claim, let us know how you get on and I hope the headaches have cleared up now.
Take care everyone, hope you are all feeling well today.
Lots of love, Dianne x x x
I have been on DLA at the full amount for both parts since 2006.
I received the DBD551 form a few weeks ago. All you need to do is fill in the information requested BUT be sure that for question 4 you put the name of the person you think will best support your claim. Then send it back to them as requested within 2 weeks. They then contact the person you name and ask them for information about you.
You shouldn't have a problem - if you are claiming both parts at the highest rate (assuming you are because you mention the DS1500) they will confirm that you are on the correct amount and leave you alone for another 3 years hopefully!
This is all part of their checking on people after receiving DLA for 3 years. If I can answer any more questions then please do ask - either here or through a pm.
Hi everyone, Im new to this, but you all sound so friendly, so here goes. Was diagnosed in dec 2005 with breast cancer and secondries in bone after fracturing my hip, have mets on spine and ribs, and bone in other hip is getting worse, orthopedic surgeon keeps eye on it and will operate on it when needs be, but I am still here after 4 years and thank my lucky stars every day.
What brought me to this site was the fact I recieved a DBD551 form this morning and I must say my stomach did a few turns. When I first went on DLA my mac nurse took the form and filled it in under the special rules.Having read all the posts from you all I am very confused, I presume it is not the form to renew the DLA but one to check you are getting the correct amount, does anyone know if I need to get the DS1500 form as well, and is this from the doctor.
Just to wish you a lovely week with your parents, hope you are feeling ok and have a good time. Look forward to hearing from you when you return
Lots of love
Hi Everyone, I agree Snoogle, they're a nightmare to complete on your own. My benefits advisor was brilliant thank goodness.
Marina, you're very welcome for the tips I gave, I do hope you get it sorted out soon. So sorry to hear you had such a bad headache and I hope you're feeling much better today. I'm going away next week for a few days to visit my parents and they don't have internet access so I won't be able to post until next Friday. In the meantime I hope you and everyone else stays well. Take good care of yourselves, lots of love to you all. Dianne x x x
I used to have a job that dealt with loads of paperwork, but I found the DLA form so daunting that I ended up getting the help of a Macmillan Benefits Adviser to fill out the form. If all benefit forms are like that it is no surprise that so many pensioners do not claim their entitlements.
Thank you so much for your advice and help. Sorry I didn't respond yesterday I went out with my daughter, granddaughters and some friends to a beautiful lavender field not too far from us, but I started off with a headache and by the end of the day was in bed with really bad migraine and feeling very sick, so what should have been a nice day turned a bit grotty, never mind!! Hope you are feeling ok today.
Once again thanks for your help, I think they make these benefits so difficult to access hoping we wont bother!
Hi Everyone, Just to say that I'm absolutely delighted for you Scaryfox, what a relief. Marvellous news.
Hope everyone else is feeling good. Take care of yourselves and have a good and painfree day.
Lots of love to you all, Dianne x x x
WOOHOOO great news Scaryfox. It is such a relief isn't it, but so wrong that they put us through this sort of uncertainty. My biggest surprise came when I applied for the motability part of DLA. I hadn't felt it right when I first claimed under DS1500 so only claimed the care part. When things got worse I wrote and asked for the mobility part and then found, like you, a large sum in my bank account. They only went and backdated the mobility part to when I first started claiming the care element!! Enjoy it 🙂
Just checked my bank account and there is a big payment in there from the DLA - backdated I assume from when I applied about 3 months ago!
Havent recieved any letter or anything so not sure how much I'm getting per week exactly, but it looks like enough to top up my (now greatly reduced) salary quite a bit!!
Thanks for all your support xx
Here's the link to the Directgov website which has information about claiming DLA:
you may also find the BCC publication 'Breast cancer and benefits' helpful too:
Hi Everyone, Scaryfox, good luck with your application, you are entitled to it so don't give up. Try not to let it stress you out as I'm sure it will sort itself out this time.
Marina, you most definitely are entitled to this whether you are working or not and it's tax free. Ring your local Macmillan centre and ask to be put in touch with their benefits advisor who should come out to your home, sort the forms out and that should be the end of it. You are also entitled to a blue badge for your car which they will sort out as well.
Debbie, I don't understand your GP or the ONC refusing to help with this. What the hell are they thinking about, I just can't believe some of their attitudes. You're entitled to this, believe me I was nervous about it as well but in the end it was so easy. Your GP and ONC need to look at the rules. Anyone with a secondary diagnosis is eligible for this, so have another go, it makes me furious with some people's unhelpful behaviour. Don't we have enough to put up with without some snotty know-all blocking the way. I keep asking this question ' Why are some people so unkind?'
Well, that's my rant for the day, I'll put my soapbox away now!!! I hope that you all feel well today and take good care of yourselves.
Lots of love to you all, Dianne x x x
I don't know if this will help anyone. I live in Leeds and we have an organisation called Welfare Rights and they have helped lots of people I know, myself included with benefit/DLA advice. They also help to fill the forms out with you because they can be very daunting in that they are very long - they really help to take the stress out of things. I don't know if Welfare Rights are nationwide but there may be something similar in your area. I got the number from my local Job Centre. Hope this helps.
Hi, I have secondaries to the bones and take medication - spoke to my oncologist about signing the form and he refused - he said I had many years left - obviously its the best news I could ask for but I am sure others who get the allowance also have many years left - my GP signed to release a personal pension to me under serious ill health rules but she didnt feel comfortable signing for the DLA ?? Dont really get it - suppose it depends on who your GP/Onc is which isnt really fair ! Still, will focus on being well and happy and not worry too much about it, at least I have my pension payout to fall back on so all good and I am gonna enjoy life - good luck with your applications ladies ! Debbie x
Hope you are all ok. Do you think I will be entitled to DLA, I had primary bc in 2006 and secondary in lung diagnosed in Nov 2009. I am not working, I am not sure if I qualify maybe someone can advise me. Thanks for your help
Thanks guys, saw the advisor, apparently my oncologist has filled out another DS1500, in addition to the one my GP did, and the macmillan lady has sent a letter asking them to reconsider... we can only wait, but this is not helping my stress levels! x
Hi Scaryfox, good luck for today, can't wait to hear what the advisor says. Julie is right, you should get it backdated to the original application date.
Hope everyone is well today. Take care, lots of love, Dianne x x x
Hi scary fox,
The others are right, you are entitled, there is an appeal procedure and you should definitely appeal! You say a Macmillan volunteer helped, it may be she doesn't know the system well enough, my Mac nurse did mine for me or there are dedicated benefits advisors, ring your Mac support and see if they can get someone with more knowledge on your case to appeal, I also think when you do get it it should be backdated to original application date.
Anyway, good luck! Hope it gets sorted quickly, let us know how you get on.