Thanks for the link Roberta…it’s really bugging me we don’t all get the same practice re DLA. Breast cancer secondaries (sadly) surely are one of those clear cut cases which should be firmly at the very back of the queue for being up for review? As most of us are on treatment for life we can feel ok with one regime and dreadful on another. I tend not to post when I’m having a rubbish few days but like everyone else my life can be good at the start of a chemo cycle and a bit rubbish by the end. That’s rollercoaster life with secondaries. If you are suddenly very ill the last thing on your mind would be reapplying for special rules that had just been taken away.

Roberta thanks for that link. I think it explains why some of us are getting different requests. You need to read it all through but I will quote the last bit because it is relevant to the form Marilf & I have received.

" Special rules pilot review

In early 2007 Disability and Carers Service (DCS) undertook a sample review of cases awarded AA and DLA under the special rules provisions that had been in payment for more than 7 years.

DCS have now decided to widen this exercise and look again at more cases made under the Special Rules provision which have been in payment for more than three years.

It will look first at the cases of those customers aged under 55 years old and then move onto customers who are aged between 55 and 64.

Alongside this DCS will look at a further sample of cases where the customer is aged between 65 and 84 years old. This information will inform decisions about whether a wider roll out should include customers in this age group.

Customers aged over 85 years old have been excluded from the exercise as evidence from the pilot showed that the vast majority of awards in this age group remain correct.

The exercise began in November 2007 and will last for approximately 12 months.

Customers selected to take part in the exercise will initially receive an enquiry form (DBD551) by post.

The form asks for up-to-date information about the customer’s medical condition and current medical practitioner. "

Marilf - if you look at the bottom left of your first page you will see that it carries the ref DBD51. We seem to have come right at the end of this ‘exercise’. Don’t know about you Marilf but I have just passed 65! and been in receipt of payment for more than 3 years.

What I can’t make out is does this mean our form filling is just an exercise for them to gather info, or is this the beginning of more form filling for us.


Hi again girls
Thanks for that, Dawn. Well, I’m 60 and have received DLA under special rules for over 6 years, so they’ve definitely started to review the benefits going to “old biddies who haven’t died yet”! I’m outraged by all of this – spending HM Gov’s non-existant money on reviewing the relatively small benefits going to terminally ill people is such a dubious and shameful piece of work. Not to mention the stress it’s causing those of us whose lives are already uncertain enough.
Grrrrr xx

Hi Everyone, I was diagnosed last November with secondaries in lung, does anyone know if I am entitled to any benefits or where I go to find out. I am under the Royal Marsden in Sutton. Thanks for any information. I am 61 and don’t work Love Marina

Hi Marina, yes you are entitled to disability living allowance and with secondaries you should be able to claim ‘special rules’ disability living allowance. The special rules mentions not being expected to live for longer than 6 months but please be assured many of us have been claiming for long beyond the six months. It’s not mean tested so even if you were working full time you would be entitled to this benefit. Your GP, Oncologist or Macmillan nurse, if you see one, would be able to advise. Link is here, direct.gov.uk/en/disabledpeople/financialsupport/dg_10011731
and I hope you are well…x

Hi Belinda, Thank you so much for your very helpful advise, I will ask the secondary bc nurse at hospital. I have not had a very good week-end, been very down as a friend who I met in 2006, we went through our initial bc treatment together, she is only 44 with a 5 year old daughter, she is very poorly with secondaries everywhere including fluid around her heart, our Professor has predicted she will only live months, I hope and pray he is wrong. I myself am not too bad in myself, like everyone else good and bad days. Hope you are keeping fairly well. Thanks again for your prompt help.
Love Marinax

Hi again Marina, I’m so sorry to hear about your friend, it’s so sad to hear her daughter is only 5…I really hope things can improve for her.
Yes I’m sure the secondary bc nurse will be able to advise you on claiming DLA…x

Hi Bertie,

You will find the Sutton Marsden ok with the DS1500 Special Rules. I don’t know if Brian - the Welfare Officer is still around - but his ofice was towards the end of the blue carpetted corridor on the right and once I had spoken to the onc and got the DS1500 signed he helped me fill in the rest of it. I think he may well organise the DS1500 form as well for you if you spoke to him first.


Hi Dawn,

Thanks for info I will certainly try and track down Brian, I am due to see Melissa the secondary bc nurse so I wil ask her too.

Haven’t heard from you in a while do hope all is ok and your pain is being kept under control.

Take care

Hi Bertie :),

Not a lot of success with the pain control. I finished the course of rads must be about 10wks ago now but haven’t been able to reduce the pain meds. They will do another MRI on the 9th to see if it reduced the tumour so have fingers crossed. Meanwhile our daughter presented us with our first grandson who was born on the 17th as a beautiful little distraction.


Dawn how wonderful, congratulations on the birth of your first grandson. My daughter gave birth to our second grandaughter 2 days after my secondary diagnosis I cannot tell you the joy they bring to me, when I am with them I forget all my troubles, I know he will give you so much love and joy. My daughter lives in Banstead just 10 minutes from the Marsden.

So sorry to hear the rads didn’t enable you to reduce meds. Fingers crossed for 17th.

Marina xx

Hi Dawn, Congratulations on becoming a grandma. I am so envious! Let me know how you get on after your appointment on the 9th. I am going on Friday for my 3 monthly routine check. Please PM me about this beautiful grandson of yours…name weight etc. Keep well,Love Val

Thank you both for posts - but I don’t want to hijack this!!! It’s a shame we can’t put photos up (apart from our avatar) but I have put photos of him on bcpals Val so you could see them there.


Congrats Dawn on the birth of your grandson. They’re a joy aren’t they? We have 11 between us!!! Hope you are feeling well today and that the pain isn’t unbearable. Will be thinking of you on the 9th. Let us know how you get on.

Got my free tax disc today under the DLA rules, so that was nice.

Val, Bertie and Dawn, hope you are all well today and taking care of yourselves. Lotsa love, Dianne x x x


I hope you don’t mind my popping in here, but I wanted to let you know that Live Chat for women with Secondary Breast Cancer starts next Thursday 10 June at 11.30 for 1 hour.

Please follow this link


which will take you directly to the live chat page.

Hope you can join us.

Best wishes


I am trying poppy without any luck. Are you having problems your end? It just keeps trying to load.


Hi Poppy

Like Dawn I could not get it to load and when I did no messages came up. I have been trying to get into the live chat for months now and still not sorted out. It is frustrating are many other’s having this problem?


Hi Dawn and Anne

So sorry you had problems with live chat, I’ll email the team to see what the problem was and hopefully get it sorted for next time.

Best wishes

I can’t beleive there’s still the postcode lottery over all of this - it’s disgraceful. I’ve just phoned my doctors to get my DS1500 form sorted, and I don’t even need to see him. I’ve got a telephone consultation (as standard practice for my doc in situations like this) later today and my form will be ready to pick up in a couple of days.

Marilyn - I’m ok(ish) It’s results day tomorrow at Christies. I’ve had my radioisotope bone scan and my internals scan,so now it’s a case of complete overhaul of my body to see if there’s any other nasties lurking anywhere. They are using these new scans as a base for any further treatment. I think I’ve still got exemestane to try (providing they can sort out my migraines on that)in relation to hormone therapy, failing that, it’ll be chemo in tablet form if there’s anything else popped up. I’m kinda nervous, because I always seem to get bad news when I go in that blooming place. The cancer area in my spine has appeared to have improved, but now there’s some in one of my ribs - so I can’t win.

Hope you are well (and everyone else reading this!!)

J xx

Hi J
Big hugs & huge good luck for tomorrow! Would be lovely to see you (and other cupcake girls) sometime this month.
Marilyn xx