General cancer discussions

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DS1500 and terminal diagnosis

Sally88
Posted by

Hi all,

I was wondering under what circumstances you were given the DS1500 form? My mum has had chemo for recurrence and her mac nurse said she should apply for this benefit as it is quite generous. But then when we got the visit from the woman from the DWP the form had "for patients with a terminal diagnosis and probably less than 6 months to live" stamped all over it! (the visitor was useless and we had lots of problems getting the actuall benefit but that's another story!)

But what's worrying me now is that no-one from her medical team told her she was in the 'less than 6 months' category. I don't know what to make of it all to be honest. Is this their way of breaking the news to us? Or was the mac nurse just too busy to think through the implications of filling in the form and forgot to tell us?

I wondered if any of you had any experiences of this to share?

 

thank you all,

 

SA

kessiex2
Posted by

Sally  What a shock for you, I find that pretty discusting. I was given "Attendance allowance" through  the Mac Nurseor Paliative nurse, and nothing was mentioned about 6 months to live. Although like your Mum I am incurable but no date has been given to me, and I dont want to know anyway,. Is that what your Mum was told. If not then that is bad and  I can just imagine how your Mum must be feeling. I would certainly contact the nurse and ask her. Or failing that contact  the consultant. This is one saddest thins I have read .Has any information at all been given to your Mum at the hospital. As i said nothing was given to me and I didnt ask, but I would be so upset to be given that information by a  visit from the D W P. That wasnt a lot of help I know, but to get in touch with the Mac Nurse  Best wishes to you both  Kessie

LittleH
Posted by

Hi SA

 

My hubbie got the DS15000 as his cancer had returned, he got full DLA and incapacity benefit with all other benefits. He was nt diagnosed as terminal at that stage, we just got told it was due to it being a recurrence that you are eligible for this.

Helen xxx

Sally88
Posted by

Thanks for the replies Kessie and Little H. I have been onto the Mac nurse and she's just being really vague and saying it's difficult to say  what the outcome will be and we should talk to the oncologist when she goes for her next chemo. Regardless of that, I think it was very insensitve of her not to tell us how the form would be laid out. It basically says something to the effect that "this benefit is for those who are unlikely to survive beyond 6 months".

 

Litlte H, my mum is also being treated for a recurrence (2nd one actually) so hopefully she'll have a bit more time yet ...

 

xxx

 

 

 

lilianmandy
Posted by

I think you need to separate the six months from the money - if you are eligible to apply - the money is substantial - 125 per week - and you get it for as long as you live- if the doctor is prepared to sign the form this is based on the average statistical survival as much as anything personal.  I have stage 4 malignant melanoma and know I have a terminal diagnosis but am hoping to last a bit longer than 6 months -  my doctor was happy to sign the form - if I do last more I'm not worried about getting more money than I should -  I won't be getting my state pension which I have paid into for years - so as I see it I am entitled and therefore can use the money for some extra  treats and to make whatever time I have left  a bit nicer - I'd rather do this than get the paperwork sorted out two or three months befgore I die and end up getting a lump sum as I'm on my death bed which will then go into my estate when I could have spent it on ice cream and cocktails. 

I know the 6 moths thing is upsetting - I couldn't even put the forms for my medical retirement in the photocopier as  I couldn't bear to read what they said - but you do get over the shock and  find ways of living with it. 

 

 Once I'd applied for mine  it toook about three weeks to process and I got the form from my GP and sent this together with some consultants' letters which they seemed pretty happy with - once you get it you are also eligible automatically for a blue badge which ,akes going out and parking easier. 

 

Hope this is helpful Mandy

kezzerbird
Posted by

Hi guys..I have just been awarded full DLA after kicking up merry hell and yes the DS1500 helped. I have no idea of how long I have and I don't wish to know but I am hanging around for more than 6 months no matter what. I think no one can ever say how long we have but I follow the old rule of "Where there is life, there is hope" and I always say that I am not dying of cancer, I am living with it and that is what I do. I wish I had known about all this before it would have been one less thing to worry about. Take care..love Carol x

Christine R
Posted by

Hi, As far as I'm aware the money is awarded due to a terminal diagnosis. I know it does say 6 months on the form, but it is given for as long as the person lives. I know it's very confusing, but I think it is worded in such a way so that people do not have to go through the normal lengthy procedures while waiting for a benefit award.

I'm sorry you had such a shock, but I can assure you it's not necessarily the case that your mum has less than six months to live. I think the nurse you have spoken to should be spoken to about the way she has dealt with you. I too would be in a state if I had seen that written somewhere.

My dad was awarded this money when he was diagnosed with advanced bowel cancer. No time limit was given for him. His cancer was inoperable, but they were going to give him chemo, but, unfortunately his bowel perforated before he had the chance to start it.

I hope this has been of some help to you and you are a little less anxious.

Best wishes, Christine xx

tomlia02
Posted by

Hi

I worked for the DWP many years ago, a DS1500 can be issued to anyone diagnosed with a 'Terminal Illness', the reason for a DS1500 is to save time filling in claim forms and waiting extremely long periods before claims are approved.  The issue of a DS1500 will give an existing or new claiment access to full dissability benefits from the date of issue without the need to fill in forms or wait to be evaluated. It doesn't always speed up payment but is always backdated to date of issue.   I hope this answers your question and as for the 6 month statement, this is not fact as no one can ever give an exact timescale, it is supose to be a guide to whoever issues the DS1500 but not neccessarily accurate..

stanmo
Posted by

My husband has incurable lung cancer which has spread to his thigh.He was only diagnosed 8 weeks ago and no mention was made  by any of the doctors he has seen that he may live 6 months or less.So when I saw the wording about special cases on the DS1500 form I was devaststed.I have spoken to our Macmillan nurse about it and she assured me that it did not mean that Stan might only have 6 months to live.I have looked at info about this form on the web and although it does say for patients who MAY only have 6 months ,it also says the benefit can be paid for 3 years before it is reviewed.Confusing!!!My son,who is a doctor says Dad would not be offered the treatment he is to undergo if there was such a small amount of time expected for him to live,

Hope this helps.I do feel the form needs changing as it is a huge shock to see such wording on a benefit claim form.

Maureen

Sally88
Posted by

Thanks everyone - really appreciate the comments.

I think part of the problem was that the woman who came to see us was really insensitive and just read out what was written on the form namely  "death can reasonably be expected within 6 months". And also that the Mac nurse didn't prepare us for this - I don't think it would have hurt her to say something like "everyone's different, nobody really knows for sure" etc etc.

She was diagnosed as stage 4 with lung mets 18 months ago, so we've always known she's in the 'can't be cured' group (if that's how you want to define 'terminal'). But obviously, the way that form reads it's like you've really passed the point of no return.

My mum was obviously upset and although I've tried to reassure her with your feedback, I think she's got it into her head now that she's in the closing stages ...

Well, hopefully her latest lot of chemo (caeylx) will give her some relief and what with all her steroids and oramorph she'll probably forget about this for a while.

Thanks again for all you help guys xxx

positivelady
Posted by

Hi just wanted to add something.

My partner (who passed away just over a year ago) was also told by Macmillan to apply for DLA under the special rules, ie doesnt expect to live for more than six months and yes you are so right, how devastating to read this and how cruelly worded. It was a long time before I could bring myself to fill out the Claim form, but we did and financially it helped us a lot.

I do however, know people who claimed under these special rules and are still fighting fit so it is not all doom and gloom.

Hope this helps, take care, Julie xx

Sally88
Posted by

Thanks Julie,

It's good to hear that it doesn't always have to mean that you are definitely in the final 6 months. I do still think they really need to think of another way of administering the form though. It's such a shock to read it if you haven't been prepared in advance by someone.

All the best to you,

Sal xx

Hiccup80
Posted by

Hi Mandy,

My mum has just been diagnosed with stage 4 lung cancer. 

The lung nurse spoke about benefits available.  We know the condition is terminal but we do not know possible time scales.

Mum is still working and I think will do for as long as she is able. Can the DS1500 benefit be applied for whilst working so it can kick in once she is no longer able...

Thanks in advance for your advice. X 

Hiccup80
Posted by

Hi Tomlia02,

This is really helpful, thanks for posting.

How does this work if the person is still managing to work currently but is diagnosed as terminal?

Thanks in advance x 

CeCe
Posted by

I hope she manages to get over this shock..I had a v similar bad experience , and it threw me for a while, ( and still can) but it's vital to be as up as you can to get through this, so she must get her dancing and singing shoes on, and do whatever makes her laugh. She sounds like she has fantastic support in you. Best of luck