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.
xx
Belinda,
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.
Julie x
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!
finty x
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
Hello Ladies,
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’
luv Clare
Hi
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!!!
Love xxxx
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.
Wendy
x
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
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.
Fran
Hi Mackers,
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
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.
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
Hi
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!
blondie
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.
blondie
I’m pleased to hear this blondie.
Good luck with your CT. x
Delighted to hear that you got your DLA Blondie…Now I am just waiting for everyone else to get theirs too. Love Val
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…
Love xxx
Mackers,
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’.
Julie
Hi
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!!
Xxxx
That’s what I hate the most about Bondronate. I don’t mnind delaying breakfast but a want a cuppa and another and another in the morning.