Financial support/benefits for new secondaries dx

Re contributions based esa, as long as you have paid enough NI it isn’t means tested so they won’t take your husbands income into account.

Hi all

I’ve heard from the DWP that I’ve been awarded the top amount of DLA. I wasn’t able to get a ds1500 from my doctor but thought I would apply anyway as I am finding it increasingly difficult to walk due to pain. I also didn’t get much help from the macmillan benefits advisor but the macmillan nurse was a godsend. She spoke to the dwp assessor on my behalf and I’m sure whatever she told him helped him make the decision in my favour.

Heartfelt thanks to everyone on this thread who offered advise. I probably would have given up without it, especially when my doctor was so unhelpful. The money is really welcome, believe me, because with this and esa together with child tax benefits, we will be just about able to keep our heads above water.

Glad you got there in the end crawfo64. The difference DLA every month makes life just that wee bit easier. Glad it all came right in the end. Val

Hi I’ve just got dla higher rate I need to claim ESA on special rules does anyone have any info as I’m also on working tax credit also do I get any discount on c tax benefit unsure wat to do many thanks laura

Hi Everyone, Could anyone assist me with information on any Life Assurance companies for patients already diagnosed with secondaries. Thanks

Crawfo I am soooooooooo pleased to read your post. Am almost jumping up and down :). You fought so hard to get this and I just can’t believe you had so little support. It really was quite shocking.

Dawn
xx

Hi Laura,

I don’t know anything about ESA but found this link to be really helpful. It sets out a lot of problems being encountered by people with terminal illnesses claiming ESA. It is really well written and clear to understand I think so well worth taking a look at and deciding what your next move should be.

macmillan.org.uk/Documents/GetInvolved/Campaigns/Benefits/FailedByTheSystemReport.pdf

It seems that if you are receiving DLA under DS1500 Special Rules then you should be placed in the Support Group for ESA and not have to go through any of the hoops that many seem to have to jump through.

Dawn
xx

Hi Dawn thank u very much i will call them tues the info was v gd happy Easter x

Hi everyone,

Just downloaded the DS1500 form and looked through it. Isn’t it complicated??!! Heading off to a local CAB tomorrow. Any advice welcome. Thanks

xx

P.S. secondaries in Liver and bone but currently stable and not on chemo.

Hi M1yu,
You shouldn’t have to fill in the whole DLA form. You should get your cons. or GP to fill in the DS1500 which you need to get back signed and include with your completed DLA form.

When you get the signed DS1500 back, you can tick the box on page 8 of the DLA form and then follow the instructions for ‘Special Rules’ on which parts you need to complete. Page 9 of the Notes will give you more info. Under Special Rules, you should get the higher rate of the Care Component without any waiting period (mine came through the same week). Macmillan were a great help here!

Good luck!
xxx

Hi all, I was recently diagnosed at stage IV at the same time as finding the primary IDC in my right breast, I have mets to my lungs and I am currently undergoing chemo, got a CT scan in 4 weeks time to asertain how well the chemo has been working.

So I came on here and after reading the posts I decided to claim the DLA my doctor filled in the form DS1500 and I filled in the actual form with the help of a Macmillian lady over the phone who kind of talked me through what to say, in actual fact I just related what my worst days had been so far. I am currently being supported by my boyfriend as I have not earnt any money for quite sometime what with the reccession and the economic climate in my field of expertise. Also for the past 3 years I have been trying to carve a self employed life which has not worked out and has left me without enough NI contributions to claim ESA (prior to this 3 years I worked for 15 years paying all my taxes and NI) yet they still wont give me anything. We are super super skint we can just afford to buy food and pay our bills thats it, nothing else, I cant afford to buy supplements or go for complementary medicine cause I have no money of my own, I have resorted to selling stuff on ebay to try and pay for the stuff I want to try although I’m running out of stuff to sell!.

I sent my form off nearly 2 weeks ago, when should I expect a reply? Also they have sent me a letter (looks like a sort of statutory letter) saying they have my claim and that should they need anymore info they will contact me or arrange for a medical examination, also at the end of this letter they say if you have not heard from us within 8 weeks feel free to call us, WHAT 8 weeks thats rediculous is’nt it? Any advice would be a great help please.

Sarah xxxx

With a DS1500 you should not have to wait that long.
What you have received is a general letter, not one for special rules.

If you are up to it, you should ring back and explain this.
If you are not up to it ask a Macmillan advisor to do it for you.
Also have you had a general benefit check, it may be that you are entitled to tax credits or maybe some council tax benefit.

Pm me if you need any more advice.

Julie x

Sarah, it does indeed sound like a standard form of reply. With DS1500 they will start the DLA from the date they received your letter. Normally they start paying within 2 weeks! So like juliet suggests nothing will be last by giving them a call and perhaps saying you were surprised to read theirs as you understood under DS1500 the claims were processed very quickly! Or like Juliet says - ask the macmillan adviser if she will do it for you.

Dawn
xx

hi Sarah
I know exactly where you are coming from as I was self employed when dx.I did not have enough ni credits as they told me I had sufficient to claim my pension so I had stopped paying-on their advice!Then when i tried to claim could not get anything.You need to get a benefits check urgently.CAB did mine for me and in the end I got income support and then they changed it to pension credit.I know all the benefits are changed now so ask for advice.Macmillan or CAB will do this for you and your benefits are usually backdated to when you apply.You should check for council tax reduction as well.
Macmillan will also give grants under certain circumstances and help with paying bills.
As the others have said under special rules DLA usually gets sorted quicker.
I know exactly how stressful this is.I also sold everything I owned on ebay and only survived with my son’s help.The cancer is enough to cope with and this worry on top is just too much.
Try not to get too stressed, and hope things get sorted for you very quickly.

Also re therapies.Do you have a maggies centre or any support groups in your area.I got therapies paid for by a charity support group.There will likely be something similar in your area.Your bc nurse may have information.

Linda xx

Hello ladies,

Thanks so much for the advice, its such a support and comfort, by the end of this week it will be 2 weeks since we sent the forms off so will ring the macmillan lady by thursday if I have not heard and see what she can find out. Praying that I get given this money as really really need it. Good luck to anyone else whose going through this process at the moment.

Love and light
Sarah xx

I am new here having recently been diagnosed with bc and now, after scans find I have secondaries in my bones. I don’t feel able to join in the discussions just yet but wanted to add to the comments about claiming benefits. Please do not fail to mention that none of the benefits available apply to anyone over 65. The cut off day is the day before your 65th birthday. After that you can only claim if unable to toilet or bathe or walk and therefore need constant (day and night) care. Attendance allowance doesn’t give you anything for travel - no car, no help with car expenses if you have the car etc., etc., Please beware of these.

Hello,

Thanks for all your advice I phoned the Macmillan lady and she dealt with the follow ups basically they had put me in the wrong place and were trying to return the form for me to fill in but as I had ticked the special rules box and supplied a SP1500 it should of been sent for a decision straight away, the DLA apologised for their mistake, so I should have an answer by the end of next week at the latest.

Thanks again.
Sarah xxx

Hi Ladies,

Just spent the best part of a day on the phone with my GP, the macmillen advisor, and DLA, they want more evidence from my onocologist, I dont understand I thought if the DS1500 was filled in then the claim would be treated as special rules which does apply to me with secondaries. My GP filled in the DS1500 and now they want the onocologist to fill something in, this is a total nightmare and one that keeps going on and on and on its already been 2 weeks, the macmillen advisor said maybe by the end of next week things will be more clearer about what they are going to do they have not said no yet just want more info from the onc. What part of there form (DS1500) do they not understand!!!

Sorry I just really needed a proper rant, such a nightmare, so emotional as also today found out that a sister of a friend of mine has just died from this god awful disease leaving 2 small children.

You rant away! you’ve every right, I’m sdorry you are having such problems with DLA.
Hope it gets sorted quickly. TRY to have a good weekend.
ZJulie x

Hi there, my last post on this subject was on the 31st of March, seems like a lifetime away now. That’s 8 weeks from when i filled out the DLA forms and sent them off.
I phoned my mcmillian nurse to see if they knew who to call to chase it up as I have never had an acknowlegement of them receiving my forms.
The MN got back to me and said they have no trace of my form and so she set in motion another 15000 form to be signed and me to fill out the mobility section again. I did this today while I was having bloods taken only to return home to a message on my phone from the DLA.
I returned their call and the lady said she had found my form and would make a judgment today :o) shorlty afterwards the finance lady rang to get my bank details and said my award had been sorted and i will hear at what level in a few days.
So the moral of this story is to chase them up, I left it far too late but they will backdate it to the date of the claim.
Good luck to other ladies claiming
Clare x