Do you think it would be useful for women with a new secondary diagnosis to have access to a 'sticky thread', like the travel insurance one, so that the information about benefits and other financial support doesn't get lost? When you are first diagnosed, how you are going to manage financially is a real concern, and I think it would really help reduce the stress of what is a ghastly period by sharing our experiences. I know that this information is posted regularly but then the posts get buried. If you agree, and can add to this post, I think BCC will make it a sticky thread.
So, here goes ...
First comment I would make is - get your onc to fill out a DS1500 for you. This opens lots of doors. The reasoning behind the DS1500 is that your onc is acknowledging that it wouldn't be too much of a surprise if the cancer killed you off within six months. It's not to confirm that the cancer WILL kill you off within six months, as some oncs seem to assume. Even the DLA don't expect you to die within six months, as it is assessed again after three years!
Secondly, approach a Macmillan/CAB benefits advisor to help you fill the forms in, preferably one who has experience of helping people with cancer. The website link is http://www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsAdvisers/MacmillanLocalBenefitsAdv.... You can self-refer or get referred by your GP. They know how to fill the various forms in to your best advantage.
Thirdly, there doesn't seem to be much information available all in one place about what you are entitled to over and above the obvious Disability Living Allowance and Employment and Support Allowance. I very much get the feeling that it is left up to the individual to discover what they are entitled to. In my case it took almost two years to find out about - via these forums - the disabled railcard and bus pass.
The range of financial support I have been able to access is:
* A Macmillan grant - I think it was about £500 that I put towards nursery fees
* Disability Living Allowance - because of the DS1500 this automatically came through. You can claim thie even if you are working, it's not means tested.
* Employment and Support Allowance, because I'd come to the end of a fixed term contract at work part way through my chemo and my contract wasn't renewed (what a surprise! no doubt in part because my employer offered a generous life insurance package as part of employment benefits and they didn't fancy paying out!). Again, because of the DS1500 and the DLA, I have been automatically put into the 'support group', which actually means that they leave you alone and don't expect you to turn up for medicals or any kind of fitness for work sessions.
* Disabled railcard - substantial discount off rail tickets nationally
* Disabled bus pass - free travel within your bus area, not sure how it would work if you were to bus further afield
* Reduced rate for access to local leisure centre as a result of being on Employment and Support Allowance (ESA)
* Disabled blue badge because of by Disability Living Allowance (DLA), which convenient and mostly free parking
* Because of Disabled blue badge I have also accessed a Motability car. Depending on the car you choose, you may or may not pay a lump sum up front, but then the monthly payments for the car (it's like a lease) come straight out of the mobility element of the DLA, and they pay for road tax, insurance, servicing, etc. All you have to pay for is the fuel. After three years you give it back and choose a new one.
Of course I would much rather not be receiving any of the above, but given my circumstances it certainly eases our financial situation, and having paid my national insurance contributions all my working life I have a right to claim what I am now entitled to.
Can't think of anything else right now, but I'll post again if I do, and if any other secondaries ladies have anything to add, please do.
Take care, and if you're reading this because you've just been diagnosed with secondaries, I hope that this info will help ease the stress.
I wrote you a pm about a week ago, not sure if u got it, it had all my contact details. Just wondering if you received it. As I do most of my posting from my phone and hve the fingers of a baby elephant if the had fingers!!! So wasn't sure if I'd pressed right buttons etc!!
Hi Nicky, I just had a fairly non intrusive form to fill in. Was asked how often I see my Onc, my GP. What treatments am I on..how long have I been on them. No 'how do you manage' and 'can you do this' 'how far can you walk' sort of questioning. They then contacted my Onc to verify my answers and that was that..it just took a long time to come through.
Hi Belinda, just seen your news from a few days ago - what a relief 🙂 Did you have to have anything re-signed/re-assessed or did they just re examine your original form?
Finally some good news (sort of). I got my letter from the ESA this morning and they have put me in the support group and have upped the money to the full amount. I didn't have to go for a medical or anything. I say sort of because obviously I would be much happier to not be in this situation in the first place but at least I can relax now that I know we will have some, all be it a very small, income for the foreseeable future. Just have to wait and see about DLA now. One thing, does anyone know how much of the additional support money will be clawed back by a decrease in Council Tax Benefit?
Hi Blondie, Don't worry about the name thing, I forgive you. Actually I answer to Sharon as well, though crawfo is fine too.
Elizabethtracey, I'm not sure about dss payments for travelling to hospital but Macmillan do a grant which can be used to cover hospital expenses. If you contact Macmillan they will fill out the forms for you and it is very easy to claim.
potmaid, I'm really pleased you got so much help from Macmillan. It's good to know that when the service works properly, they are able to help people. For me, I would rate their service as less than useless.
Great news Belinda :). I do think it is awful the way this sort of thing puts us under unnecessary stress. This is the bad side of forums - we here of people being treated what appears to us to be unfairly and we are left wondering if we will be the next one.
I don't know if any one else has completed their forms the way I did (I wish now I had kept a copy!). Where it asked questions like how far can you walk I was intentionally evasive. I said something like I didn't know how far because I was afraid to put it to the test. I went all through my hospital notes picking out snippets from the bone/mri scan reports and quoting them to show how seriously my bone structure was damaged. I have a lot of really awful cramps that amongst other things can affect my feet. They last for about 20mins on a bad one and I am afraid with them coming on suddenly I will fall and with the state of my bones, cannot risk a fall.
I think what I am saying is if the style of the question doesn't suit you - answer it in your own way. If you have gone the DS1500 route - and it is best to do that if you have 2ndaries then you don't have to answer a lot of the questions.
LOL probably the next person that answers the way I did will get their form returned with a note that says "Answer the question please!"
Keeping fingers crossed for you Crawfo that you will get yours accepted without waiting too long. And for anyone else waiting under the stress of renewal.
Just to let you know that I was rather surprised and taken aback as already my Mcmillian nurse has the DLA1500 form all ready and signed,withing 3 days of enquiring!!! Its me lagging behind filling out my bit, so fingers crossed I will get the award. I was totally against having someone sign something saying i had only 6 months to live but after reading up and helpful posts on this forum, you are all correct, no one knows really, with or without treatment, how long we have and to be honest the form is very daunting when faced with it, frightened to write in the wrong thing. I am at this minute trying to work out how far i can walk without severe discomfort, I can barely stand sometimes without hurting somewhere......
She has been a godsend, when she says she will do something, she has it done, she got me the blue badge on a fast track system withing 4 working days, I was impressed.
I hope you all hear soon and work out any appeals that are in the pipeline, fingers crossed my form is filled out correctly without having to jump through anymore hoops......
hi ladies, does anyone know how or if i can claim travelling expenses to get to hospital for my rads, the hospital is miles away from where i live, any suggestions would be gratefully received all the best liz xxx
I sent my forms off this morning so we will have to wait and see how the claim goes. I think I meet the criteria but I don't know what the dla people will think.
Mackers, I pm'd you.
blondie, I'm also delighted you got your dla.
scottishlass, I am seeing my GP on Friday but don't have a good rapport with him. I find him very difficult to talk to and the thought of talking to him about such a difficult subject puts me off. I've got an appointment with my onc the following week so maybe I will discuss it then.
Tnx very much for your post I've just had a mx chemo and radiation and now am hving my mets looked at. So to ask the doc or consultant to sign a form that says I have less than 6 months to live doesn't seem right. However just rang the Dla and she did say some docs sign the form anyway, ignoring the "6" months thing ....So worth a try I'll give it a go !!!
On another note had my bone drug 40 minutes ago CAN'T wait for a cup of tea!!
If you get your DLA under the special rules (DS1500) you do not have to complete any of that guff in the care section. Your adviser should have just told you to tick 'special rules'.
Thanks everyone for your replies, really nice that you are all so supportive.
It's not the money it's the principle... I really don't think the benefit form is geared up towards us. We should have a form especially for people with secondaries who aren't well enough to work, but who can be left alone for an hour, who dont hear voices and can cook a meal without endangering herself and her nearest and dearest and can even be trusted with knives, not all the time tho!!! Joke!!Sorry if I sound flippant but I find the whole thing a bit embarrassing and I really don't know why...?
Crawford... The Mcmillian nurse sent me the forms with the criteria and some helpful information on what to put in the form... She said if I appealed I would most prob deff get it. I'm quite happy to send you a copy of the form she gave me or give you a call and I'll go through it with you on the phone what she said to me if you want to pm me. I wouldnt try filling in the form on your own without this information...as there seems to be a knack!!! How awful does that sound!!!
The things we have to go through!!! I'm ok tho and thanks again for all your support...
Mackers and Crawford
Re-read my post and it seems a bit insensitive given your experiences with getting DLA. Do persevere and do get help - it is better to delay sending in the forms and getting it right than going through the process of appealing, if at all possible.
I wonder if you should contact your local Hospice for help. Our hospice has Mac nurses attached and they were brilliant and helped me loads. You don't have to be at death's door to be helped by the hospice people. I was referred by the hospital as soon as I was diagnosed with secondary disease and they assessed my needs (including DLA and Blue Badge, reiki massage etc) and told me that their business was palliative care and support for you and your carers - however long you need it.
Letting you all know that, hurray!!, I have been granted my DLA with no change. I am so so relieved and happy - that, coupled with the fact that last week the insurance company paid out the whole of my pension pot without a quibble - should make me suicidal (ie I must be really poorly) but here I am pleased as punch and planning how to spend my loot.
Forget the fact that it is CT scan Monday, treatment on Tuesday - the sun is shining, life is good!
Crawford. Why not make an appointment with your Oncologist or/and GP. The fact that you are having trouble contacting anyone who will return your call is appalling. But if you get your GP right in front of you you can ask them, face to face, if they will support you in your application. Getting them on your side is essential. I know what it is like when you have no energy and everything seem such an effort. I do wonder why the powers that be make things so difficult for people who are quite ill. I do not think they have experience of the difficulties it causes us. So get your Oncologist or GP working for you. It should make all the difference. Sorry to push you, But it will be worth it if your application is successful. Do not give up just yet. Love Val
I've given up on getting any help from the Macmillan service re filling out the forms, etc. Last contact I had with anyone they told me they were going to ring me on a particular day. When she didn't ring I rang her and was told she didn't work that day. Ever get the feeling someone was trying to avoid you. I've asked my GP's secretary for ds1500 but haven't heard anything back despite going in and asking again on two separate occasions. I've decided to fill out the forms on my own and no doubt I will say the wrong thing and have the claim rejected but I can't afford to wait any longer for someone to help me and I don't have the energy to pester people until they help.
I would appeal. I would speak to my GP with the letter you have just received about refusal and also talk to my Oncologist or Breast Care nurse.
I have been unable to work for 12 years now. If I had a job they would have to allow me to sit down and rest every 20 minutes AND have an afternoon nap... think not.
This benefit has made a huge difference in my life and how I would mange without it is unthinkable. I had to retire at 49/50. I don't want to be beholden either but I worked for 10 years after my first diagnosis and have never been unemployed before. Perhaps it is my turn to claim a benefit that has made my life more bearable by taking away the anxiety of not having a salary coming in and help with my daily care and getting around.
I hope you will go to appeal. Let us know what you decide and the outcome. I am sorry you have this to deal with on top of everything else and that you are successful next time. Love Val
Mackers - I understand your frustration; I'd planned to submit and then decided not to as I'm still able to do alot even though I've now put in for early retirement on ill health from work - advice I got from a benifits advisor at a very useful BCC "Living with Breast Cancer" day was that you needed to make sure you met the criteria - and I've decided that I don't yet as on a bad day I can still "cope" and get around by myself - just can't find enough energy to walk to the bus after chemo and I can't drive as shoulder op more bone mets has restricted movement in left arm. I think there are a lot of us with secondaries who do not really meet the criteria and have additional expenses due to the illness.... I don't want to be so ill I need to benefit but it is annoying at the same time when some BCNs seem to advice submitting for benefits for all secondaries.
Hi Mackers, like Wendy I've found Macmillan nurses are normally really helpful with all the form filling, please don't give up, do apply again.
I agree it's not very nice having to apply..just what's not needed on top of all the other medical stuff..moan away..this is the place..we all know how you feel..xx
Really sorry to hear that Mackers 😞 Can your Macmillan nurse help you to appeal?
It's such a slap in the face I think, having to go through all this and then for them turn around and say, basically, "It's not that bad, what are you moaning about...."
Thinking of you.
This is just for moaning purposes only !!!
I have just been refused the Dla. I have a couple of mets pelvis and rib. I know I didn't fill the form in properly Mcmillian nurse explained afterwards. I just find the whole thing so difficult ! "can I go to the toilet on my own, can i go out in open spaces alone." makes me sound like a b&"&&** toddler!! I know your supposed to think your worst day, but i just find the whole thing really hard.
I am hoping to go back to work partime only a couple of days, but if I agreed with everything on the form i don't see how I could as I would be incapable of doing most things on my own!!!
I am very aware of the fact I'm very ill and who knows how long I'll be around (fingers crossed many years!!!) but I wish 'THEY'would give us all a break and a bit if dignity!!!
Just thought I'd chip in here with your discussion re Blue badge and DLA.
My macmillian nurse is so proactive, she got me a Blue badge on the fast track scheme, it took 4 days.......I was so impressed, not used it yet as I am on strong painkillers but useful to have when ferried to the hospital.
She is getting the DLA 1500 form for me monday, hoping she can wave hare magic wand with that too lol.
Another nice day in sunny Oxfordshire, am going to make the most of it and at least sit outside and get some 'rays'
Will I relate my best Blue Badge moment?
We were in Italy. I was really frail at the time. My husband was sick to the back teeth of people pointing to my car and the fact that I was parking in a Disabled bay. So this incident was the straw that broke the camels back for my hubby. To cut a long story short he shouted at a young man who was questioning the fact we were using a disabled bay' So he shouted to the young man to get out his car...The young man opened his door....but didn't get out....because he had no legs! Just goes to show that even the disabled get it wrong sometimes!
Overcast up here today. Not venturing far though as did too much yesterday. Love Val
I think I would be tempted to display a note next to the Blue Badge explaining in no uncertain terms why it is necessary - and then wait at a safe distance to enjoy the discomfort of the busy bodies reading it. But that's just me!
I remember that case. Didn't an older man go for her with a stick ?
The blue badge will not have anything to do with the decision. As you say, probably communication channels.
I have a blue badge and use it when I need to. I have been waiting for a challenge. As yet I have just had funny looks and people inspecting my badge (from a distance thankfully).
Nicky, you should definitely have one.
Hi Val and Nicky, yes I think my lack of a blue badge could perhaps be a factor in my DLA assessment taking so long. At this very moment I don't think I need a badge as I feel less stiff on this chemo than I was with Arimidex. I would/will apply if/when this changes though. Nicky I was quite unprepared for having to get well out of (some) other's way when on crutches...particularly in supermarkets! So many seem in such a hurry and see a person on crutches as an inconvenience..an obstacle in their rush to the checkout. 😞
The friend I mentioned resorted to taking off her wig to prove she was on chemo..no-one should be put in such a situation that they feel they have to do that. 😞 She was really shaken by the whole incident and was really poorly at that time.
I am just about to apply for my blue badge in preparation for when I come out of hospital, however my Macmillan nurse said that I should have one, if just to get a wider parking bay, for those of us with stiff joints/bone mets it's not always easy to slide out of a car in a restricted space! I will store up some retorts to use if any small minded people challenge me! Although it would probably be all talk, as I would probably just crumple if challenged!
Hi Belinda, I use my Blue badge every day. But I have been verbally attacked before and it is not a nice thing to experience. But I won't let those small minded people stop me from using it. It makes a HUGE difference to my day to day life as it conserves what little energy I do have, to do the things I like doing without becoming exhausted just getting to places. If you really could use a blue badge, DO PLEASE think again. (It may also help with your claim to DLA). I am sorry that your friend had the hassle which upset her no doubt. How long will it take for the general public get it into their heads that you do not need to be in a wheel chair to be entitled to a Blue badge. Nosy busy bodies all of them. Hope you hear soon so that you know where you are. Hugs Val
Hi Julie, I think my claim is being held up by the usual contacting doctor/Onc channels...I must surely hear back soon??!
I've never claimed for a blue badge as I just don't need the added hassle it can bring in a Tesco/Sainsbury car park. A friend who died a few years ago was really aggressively verbally attacked by a shopper not thinking she was ill enough to be using her badge...a few months before she died and in front of her young daughter. 😞
Julie, So glad that you have had your DLA renewed. It is such a worry for a lot of us. Glad you didn't have to wait too long to hear the result. Hope you are well at them moment. Thank you so much for letting us know.
Belinda and Blondie I cannot understand how you are still waiting for your result for DLA. I just hope it all comes right for you both after waiting so long. Do they realise just how much it worries us all....the not knowing either way. Love to all on this thread. Val
Well done on getting your DLA. I have still not heard anything and still dread the post. Husband just retired so the indecision over our 'indefinite' awards is awful. I fear that taking more time over Belinda and my claim may not be good news.
Not really been posting that much lately. However I have just had my DLA renewed under special rules at the same rate.
It took just over a week.
Hi Belinda and all
I too have been having sleepless nights, and dreading the arrival of the post as my DLA is being assessed too. Any news on your assessment Belinda?
Great to be able to post!
Thanks for the info on esa support group and getting more money. I am in the assessment phase at the moment but hope it will go up to £90 when I get assessed. I think I'm right in saying that if I could get dla under special rules it would go up straight away and I wouldn't have to go through the assessment. The trouble is I am getting nowhere with getting someone to sign the DS1500 for me. I went back to my GP surgery but they told me they have written to my oncologist for advice and I'm still waiting to hear.
Sorry girls if I am getting a bit off topic :). But in response to Val - you are doing really well to have got back down to 20/20. When I was on MST like you I was up to 60/60 and getting more and more tired. I switched a while back to fentanyl and have just doubled the patch dose I am on from 100 to 2x100. On top of that I am still needing to top up with fentanyl lozenges as and when. But if I do any extra activity like simple housework it ups the pain. Am also taking 300x3 gabapentin and the macmillan doctor is talking of increasing that dose. As for the dexamf... I was first prescribed these in 2009 and still have not finished that box - so really do take them very occasionally. Thanks for remember the grandkids - but there is only one! and they are spending this weekend with us. He is so delightful, a lovely natured little chap. I am just so thrilled that I have been around to get to know him.