DS1500 is the form
To be given DLA under "special rules " includes the highest care component, but does NOT automatically give the mobility component. I’ve been receiving DLA since December 2009 (still here more than 6 months later 
) and I don’t get anything for mobility.
Blue Badge application is separate (to your local council, I think, but others will know) and I was told that I would be very unlikely to get one if I applied.
Hopefully if my mobility deteriorates, I could reapply for the mobility component of DLA. Anyone done this in the past year or so?
Hi All
I’ve given up all hope of getting any help from the Macmillan CAB advisors and was hoping someone on this thread might be able to help me. I’m totally confused even though the process looks like it should be quite straight forward. I had an oncology appointment yesterday and I asked him about form DS1500 and he said that I had to get the form from somewhere first and give it to him to fill out but I don’t think this is correct is it? If it is, where do I get one from? I don’t know where to turn to next??
Sharon
Sharon my understanding is that all doctors, consultants. macmillan etc have these forms. Either go and ask your PALS people in the hospital or seek out the hospital welfare person. You might get some answers. It really is ridiculous isn’t it.
Dawn
xx
Thanks Dawn,
It is really frustrating because I have tried ringing my consultant’s secretary but she says she knows nothing about it, and the breast care nurse said the same. According to the instructions that come with the DLA all you have to do is ask your doctor or specialist for a DS1500 report but nobody I have asked seems to even know what this is let alone have the forms.
I think I contacted DWP and asked them to send me the DS1500 form
- see direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/DG_10011731
or
patient.co.uk/showdoc/23069010/
I discussed the with my BCN - I made it clear that I didn’t want to see the onc’s report! I filled in the relevant parts of the form, and my BCN checked it and arranged for it to send it off.
Hi,
I too struggled re DLA benefits until I rang my macmillan nurse, which triggered form filling and a visit from local disability rep. it all came together then.
I wonder why there is such a regional disparity, service disparity, and a total misunderstanding of the diagnosis of sec.BC.
I have a blue badge ( sec lung mets) but we need to keep an eye on these as changes are promised!!!
Good luck with your search for support, you deserve it, I hope it will help a little to help you deal with this disease.
hazlenut
Sorry you are having problems. The difference in services is crazy!
I got referal to mac nurse from my GP, the Mac nurse filled the DLA form out for me I just had to sign them, she also got GP to sign the DS1500.
Perhaps a visit to GP or phone local MAc/hospice?
Good luck!
Julie x
Hi All
Thanks for all your suggestions. I think I’m finally getting somewhere now.
I went to the GP surgery as you suggested,Julie and at first I was told to ask either a macmillan nurse or a breast care nurse. I felt like screaming because I was just going around in circles but when I told them that I’d tried all those avenues, they came up with the right form and they are going to ask the GP to fill it out.
I have one question though. Has anyone found that their GP interprets the 6 months rule strictly and won’t sign it or is it more or less given if you have an uncertain prognosis. I’m not sure about my gp, he can be quite officious.
Hi again,
My Gp wouldn’t touch it, macmillan nurse and Oncologist signed mine the 6 months rule is unanswerable in many cases and oncs seem to know this. Yes i have a GP a bit like that too, makes you wonder why they do the job!!! Ha Ha silly me , it must be the salary of course!!
Can you tell i had a bit of a snotty conversation with mine just yesterday… I always feel like a sulky teenager when i see him! Do you have a local disability rights group? The lady who visited me, ( she was contacted by Macmillan nurse) reduced me to tears she was so kind. I hope you find similar
Good luck
Well I’m reduced to tears this morning but not out of kindness. I managed to get through to the Macmillan CAB advisor yesterday and she was lovely. She gave me loads of advice and support and said she would ring back this morning at 9.30. She said if she didn’t phone me for any reason I should phone her, and guess what I did and she’s not there. She doesn’t even work for Macmillan on a Wednesday and the CAB where she works the rest of the time doesn’t have a telephone line. I don’t know what she’s playing at but it’s really annoying to the point that I feel like putting in a complaint.
If my doctor won’t fill out my DS1500 form, I’ve no idea where that leaves me.
Hi Crawford,
It no wonder you’re feeling at the end of your thether. I certainly would phone up and complain. You’re going through enough without all this.
Can I ask if you’ve spoke to your onc? As they will also sign the DS1500 for you. I hope you get this sorted out soon;
you don’t need this added stress.
Love
Chris xx
Hi Girls
Just to clarify things, your GP should automatically issue you with the DS1500 when the diagnosis of mets is made. Just so that you don’t miss out on a payment, as soon as you have your diagnosis, either make an appointment with your GP or telephone your GP surgery and ask for the DS1500 to be completed. Your 1st payment should be issued within around 10 days of receipt.
I know this as a GP Practice manager…with mets.
Good luck…Jane xx
Just to clarify things further - and I know I shall probably be shot down in flames for this but still…
Disability Living Allowance (DLA) is available if you have care and/or mobility needs. In addition, the DS1500 form allows you “if you have a progressive disease and are not reasonably expected to live for more than six months” (direct quote from the Directgov site) to get DLA more quickly. This is not necessarily the same as receiving a diagnosis of mets.
I realise that I am fortunate, if anyone with secondaries can be called fortunate, in that I am currently well and responding to treatment, and have no intention of popping anywhere in the next six months. I have every sympathy for those whose situation is more serious, and realise that I shall reach that stage at some point too, but nevertheless I feel it is wrong to suggest that DLA is necessarily automatically available to everyone diagnosed with mets.
My aim is not to offend or upset anyone, but to ensure that false expectations are not raised.
Hi geewhiz
I think the reason why many of us apply for DLA is that there is no certainty that any of us will be here in 6 months! I sincerely hope we all are, I too feel well at the moment, but there are no guarantees and I know from my time on these forums that the bloody disease can progress very quickly. It makes sense to have everything in place to facilitate less worry when the ‘unfortunate end is in sight.’ I also have had to reduce my hours at work as my fitness levels and physical abilities have decreased and find the payment enables me to survive financially.
I must admit I did feel a bit guilty that perhaps I wasn’t entitled to it as I can sometimes walk freely (not always though, due to the mets in my hip!)but realise that I would MUCH rather be continuing to work full time and this DLA goes some way to being a financial compensation for the completely shit hand life has dealt me and my family. I would certainly never have chosen to be here!
Yes many of us rely on DLA to help us cope financially after a secondary diagnosis.
I am not shooting anybody down in flames but we are not all lucky enough to be supported financially.
I am managing to carry on working (albeit reduced hours) but many people are not so lucky with their secondary diagnosis.
I suffer extreme fatigue, aching, tiredness and depression (not including other drug side effects). Some days I barely manage part time.
If i did not work and/or have DLA we could not cope financially at all. That is it what it is paid for, to enable people with disabilities to be able to live.
I will not be alive to receive my state pension to which I have paid into, this assuages the guilt.
Who is to know whose death is not ‘reasonably’ expected in 6 months with a secondary diagnosis. Things can change very quickly and this is the uncertainty we have to live with.
Julie
hi all, so glad i found this thread i too claim DLA, i was dx with BC in sept 10 took vol redun (been their 20 years and firm onway out)thought id be looking for new job in a years time, on the 20th nov 10 was DX with secondaries my BCN sorted form for DLA appart from the affects of chemo and slight back pain i manage ok (altho since lossing hair dont go out much)ive worked since 16 im 50 now, more than likley i too wont recive a state pension so why the bloody hell do i feel guilty for claiming???im looking into drawing lump pension sum due to ill health dose any one know if this will affect DLA???once the hairs back and chemo done i intend to try to enjoy wat time i have left no matter how long that is…i, like i would think all u ladies would agree, would give anything to be geting up at 5am to go to work even at this time of year but like its been said before life has delt us a SxxT hand so lets make the most of it …
I’m still struggling with dla. Everytime I think I am getting somewhere I get knocked back. I asked my GP’s receptionist for the DS1500 form about a week and a half ago and she said she would ask the doctor but I haven’t heard anything since. I’m not sure if that’s because it would normally take a while for them to put together or if it’s because they have forgotten me or if it’s because they won’t do it for me? I suppose I’ll have to go back in and ask again but it took me all my courage to go in the first time. I don’t know why it is that in some areas the breast care nurse or macmillan nurse seem willing to sort it all out for you but in other areas you are just left to get on with it yourself. If it hadn’t been for these forums I wouldn’t even have known about dla.
hi
I downloaded my form from the direct gov wed site.I filled it out and asked them to contact my oncologist,which they did.I was granted full benefit.I was advised to tell them everything and to fill it out as I felt on my worse days, I was in the middle of chemo and could not even get out of bed so told them that!
I could have claimed under the 6 month rule but could not bring myself to do it.It would have been far easier.
Good luck and hope you sort it out.Why is everything so difficult when we most need it?
The way I look at it this disease has made me so angry I am not going to be beaten by someone who does not understand,or a piece of paper!
Just to respond to a comment made earlier, I started this thread because I thought it would be a resource for secondaries ladies wanting to seek financial support, not a forum to discuss the merits or otherwise of seeking that support. I think many of us feel guilty already for all sorts of reasons without adding to that guilt by feeling like somehow we shouldn’t be applying for benefits that are there to help us.
And I agree with julie about the unpredictability of this disease. Someone I got to know via this forum died in January, having gone down hill very rapidly. I don’t think anyone of us could say with absolute certainty that we will or won’t still be here in six months’ time.
Alison