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Financial support/benefits for new secondaries dx

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Financial support/benefits for new secondaries dx

Do you think it would be useful for women with a new secondary diagnosis to have access to a 'sticky thread', like the travel insurance one, so that the information about benefits and other financial support doesn't get lost? When you are first diagnosed, how you are going to manage financially is a real concern, and I think it would really help reduce the stress of what is a ghastly period by sharing our experiences. I know that this information is posted regularly but then the posts get buried. If you agree, and can add to this post, I think BCC will make it a sticky thread.

So, here goes ...

First comment I would make is - get your onc to fill out a DS1500 for you. This opens lots of doors. The reasoning behind the DS1500 is that your onc is acknowledging that it wouldn't be too much of a surprise if the cancer killed you off within six months. It's not to confirm that the cancer WILL kill you off within six months, as some oncs seem to assume. Even the DLA don't expect you to die within six months, as it is assessed again after three years!

Secondly, approach a Macmillan/CAB benefits advisor to help you fill the forms in, preferably one who has experience of helping people with cancer. The website link is http://www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsAdvisers/MacmillanLocalBenefitsAdv.... You can self-refer or get referred by your GP. They know how to fill the various forms in to your best advantage.

Thirdly, there doesn't seem to be much information available all in one place about what you are entitled to over and above the obvious Disability Living Allowance and Employment and Support Allowance. I very much get the feeling that it is left up to the individual to discover what they are entitled to. In my case it took almost two years to find out about - via these forums - the disabled railcard and bus pass.

The range of financial support I have been able to access is:

* A Macmillan grant - I think it was about £500 that I put towards nursery fees
* Disability Living Allowance - because of the DS1500 this automatically came through. You can claim thie even if you are working, it's not means tested.
* Employment and Support Allowance, because I'd come to the end of a fixed term contract at work part way through my chemo and my contract wasn't renewed (what a surprise! no doubt in part because my employer offered a generous life insurance package as part of employment benefits and they didn't fancy paying out!). Again, because of the DS1500 and the DLA, I have been automatically put into the 'support group', which actually means that they leave you alone and don't expect you to turn up for medicals or any kind of fitness for work sessions.
* Disabled railcard - substantial discount off rail tickets nationally
* Disabled bus pass - free travel within your bus area, not sure how it would work if you were to bus further afield
* Reduced rate for access to local leisure centre as a result of being on Employment and Support Allowance (ESA)
* Disabled blue badge because of by Disability Living Allowance (DLA), which convenient and mostly free parking
* Because of Disabled blue badge I have also accessed a Motability car. Depending on the car you choose, you may or may not pay a lump sum up front, but then the monthly payments for the car (it's like a lease) come straight out of the mobility element of the DLA, and they pay for road tax, insurance, servicing, etc. All you have to pay for is the fuel. After three years you give it back and choose a new one.

Of course I would much rather not be receiving any of the above, but given my circumstances it certainly eases our financial situation, and having paid my national insurance contributions all my working life I have a right to claim what I am now entitled to.

Can't think of anything else right now, but I'll post again if I do, and if any other secondaries ladies have anything to add, please do.

Take care, and if you're reading this because you've just been diagnosed with secondaries, I hope that this info will help ease the stress.

Alison x

285 REPLIES 285
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Hi Val,

I needed to provide 2 recent passport photos for my application. I may have paid a couple of pounds, but certainly not anything like £20. The money had to be a cheque, which seemed weird for such a small amount of money. Is the £20 refundable? I had to pay £20 for my 'free' parking pass at the hospital, it just gets transferred to the new one every 6 months. If I lose it (or allow someone else to use it fraudulantly) I lose the £20.

This is Chester West.

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Thanks for replying Julie. I have had my pass for years and years but now the Council want to charge us. Just wondered how many areas were going to do so. I find my Blue Badge wonderful benefit but think it is a bit unfair to charge at all. There are free bus passes for the over 60s who could be as fit as a fiddle but the disabled are being targeted. I will pay it... but wanted to know if there is any other areas doing this. I may write and complain if I find it is just Edinburgh.
Anyone else had this charge? Val x

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Val,

I had mine renewed for nothing, using the 'tellytalk' thing at the local library.

I did not even have to bring photographs as all was done virtually using a sort of video conferencing procedure.

I am not sure about Scotland but it is definitely worth checking things out .....before you pay !!!

julie x

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Anyone had this letter yet regarding Blue Badge?
My one runs out at the end of the month and I have been asked to pay £20 to have it renewed! I just wondered if any other area in Great Britain had asked Blue Badge Holders to do anything similar. I am in Edinburgh in Scotland. Thanks, val

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Thanks Marif have PM'd you in return. Val

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Val - have sent you a PM about my DLA review. xx

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PS I have not heard a thing but keep wondering if the postman is going to deliver the dreaded letter to me. I have been assured that I have nothing to worry about but it is still on the "back boiler" of my mind and it gets me down. Val

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Hi everyone.

I would like to know if anyone who has been claiming DLA for a few years has been called for a review. I just want to know how many of us are claiming and it you have had any trouble with an award or an appeal. I have been on DLA myself for many years. Just want to know how it is across the country. Thanks, Val

PS I hA

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I got the feeling when I spoke to the claim assessor for my DLA that the decision was his to make. The one I spoke to was lovely though and kept putting words into my mouth to support my claim, like at one point he said how he'd got the forms 4 days too late to backdate it, but they had been having problems with the internal post so did I think I might have posted it 5 days ago.

It's totally unfair but it seems to me your claim could be rejected just because you get an assessor who's a bit of jobsworth.

Having said that, this is the first time I've ever heard of anyone's claim being rejected after you've been given a DS1500. I thought that was the hard part, and once you got that you were home and dry, It would seem that maybe it's down to the government trying to save money.

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Hi Juliet66,

Thank god, I'm not going bonkers then, this is crazy, is'nt it??!!!!

Some people have said they have refused me due to the fact that I am going to be having mx surgery both primary and secondary found at the same time, this still does not take away from the fact that I have secondary cancer, I should be entitled to this benefit as others with the same diagnoses are receiving it. The woman I spoke with on the phone seemed to contradict herself saying that the decision makers or there doctors were the ones who made the decisions, then in the next breath she was saying that she would make a decision today!!!! So who the hell is making the decisions, I reckon these people at the DLA are more corrupt than anyone else, I reckon they have lied to me on more than one occassion since all this started, first of all they had lost the form, then it was put in the wrong pigeon hole, then it was because my GP's professionalism was being questioned, now its because my Onc has not got back to them due to his holiday and the fact that he's so busy making sure all his patients are being cared for and not thinking I must fill in all those stupid forms for the DLA, lies lies lies thats what I reckon, just trying to get out of giving me any money, so that the government figures look good. What a load of total b**shit.

Thanks for the tip about contacting the MP something I will do.

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This is the first time that I have ever heard of anything like this sarahlouise.

If your Gp has completed the form, based on the reports he/she receives from your Onc, that should be sufficient.

If you do not have the energy, just ring and request a 'reconsideration' or get your Mac adviser to do it. Your case will be looked at by a different decision maker. I would also tell them that you are going to see yor MP.
If you do not get a fairly swift response I would actually do that. Remember decision makers have no medical expertise. On your form look at the section...how we came to our decision...This will tell you which actual twerp decided that the DS1500 issued by your GP was not medically relevant.
If you have the energy please let us know. This is either a disgraceful error or the start of draconian changes to benefits for those with secondary cancer.
I have just re read My1u's post and am horrified as I suspect the latter.

Julie x

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So the DLA phoned me yesterday and told me that I had been refused on the grounds that they did'nt agree that I was a special rules case!!!!!! (even though I have multiple secondaries to my lungs). They then asked me a question about my mobility and told me that they would make a decision and send out a letter although the letter might take 10 days to arrive!!!!! (so I have to wait 10 days for them to tell me I did'nt get it!!!) what sort of sick joke are these people.

Ok so the government are cracking down on benefit fraudsters etc but i'm not lying about my diagnoses, my GP has filled in the DS1500 but they did'nt agree with her presenting the form saying it was not necessarily appropriate, they have contacted my Onc he has not responded to there request for a report yet as he has just got back from holiday. This has been going on since April and still I dont know whether I am going to get anything at all. This is causing no end of stress and upset I just dont need it.

Sorry about the rant ladies but I just cant get my head around the fact that they seem to think I am lying to them or something. Its just ridiculous, I tell everyone about this nightmare with the DLA and people are disgusted with the way they have treated me, I've always worked and paid into the system and feel cheated out of what should be rightfully mine. What is the point in paying into a system that lets you down when you really really need it.

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I have secondary breast cancer and am receiving DLV. I have been off sick for 9 months and have run out of sick pay. I phoned the help line and they advised me to get an ESA form. Good luck.

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I have lung mets claimed under special rules they ignored my box also but after a phone call was told it had been sorted I had no probs went straight through but I have also arthritis so that might of helped we don't need the extra stress ESP if we really did only have 6 months to live my was done in march so don't give up kp trying and appeal if u don't get it someone looks at y claim again u have to spell out the bad days otherwise u won't get a chance gd luck laura

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Hi M1yu,

So me and you in the same boat with this DLA, I was told to apply for DLA, found out I had secondaries mets in lungs just after finding out about the primary tumour in my right breast earlier this year beginning of march.

Shortly afterwards I decided to apply for DLA. Phoned macmillan they started the ball rolling and I duly filled in the forms ticking the special rules, my GP filled in the DS1500, DLA phoned and did'nt agree with my GP's opinion and filling in the DS1500 that I only had 6 months left to live, they now are waiting for my Onc to confirm the DS1500 and as he has just got back from the states has not had time to fill in there forms, too busy trying to help people suffering with cancer and not pen pushing!!!!!! So if he fills it in then they might give me it if not then no they wont. I am so skint I have practically sold everything on ebay that was worth anything got to go through my jewellery next if this carries on, its been at least 8 weeks so far and still no word from them, macmillan keeps phoning them but they have not heard back from Onc yet, so no answer.

And it is totally ridiculous that a dr has to sign a form that stipulates how long someone has left to live, yet in the same breath they will review the DLA award in 3 years!!!!!!!! how nuts is that!!!!!!!!! total contradiction.

There is no simple answer to your question (should be flippin simple) M1yu but dont hold your breath about this one, they seem to be tightening up on the DLA yet if you are a drug/alcholol addict you might get every benefit known to mankind, personally I feel we deserve the extra DLA money to help us through this utter nightmare.

I am still waiting for a reply about this and phone most days either macmillan or DLA, they even made out that I had filled the forms in incorrectly and totally ignored the fact that I ticked the special rules box, spent at least 2 weeks trying to get me to fill in the extra part of the forms (special rules do not have to fill in certain questions and sections of the forms), I think they are simply stalling for time, perhaps they think I might not make it so they wont have to pay any money out, this would not surprise me, but it is food for thought and will be making notes about this experience I feel a strong letter is on the cards.

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Thanks Teresa, I'll look into it.
Take care
Liz

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Just out of interest, has any of you with secondaries have been unsuccessful in applying for DLA under the special rule.

I had a phone call today saying I can't because they think I can live longer than 6 months!! But they will try to apply for me under the self care thing whatever that is and still no idea whether I can get it:-(

Posted more details under the "Employment, travel and financial issues" section. Just would like your view on this.

Thanks xx

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Hi there as far as Iam aware you can claim if you are only working less than 16 hrs per week so you might be entitled now.Good luck Teresa

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Hi
I'm currently off sick from the NHS as diagnosed with secondaries in my bones in February. I know I can't claim ESA at the moment as in the NHS scheme, I get full pay for 6 months then go onto half pay. Do any of you know if I can claim ESA when I'm on half pay? (I was only working one day a week anyway, so what I get is not a lot!)
Thanks
Liz

PS My Macmillan Nurse both at the hospital and the advisors in the community have been really helpful and I think I'm now claiming all the benefits I can, except the ESA.

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hi Alison 44, im have just come to an agrement with pension company on the grounds of ill health, i have got a lump sum and a small monthly pension had to get a letter off oncol dr saying what my life expectancy is, apart from them draging out the process it was quite easy...

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Hi - I am posting this here as there was previous discussion re pension and lump sum - and wondered if anyone has explored pension possibilities - I am working full time and have 2 pensions (one from former husb) and am 51 but may want to/need to access lump sum and pension sooner rather than later.

I have had financial advisor who suggested I fill in a form to transfer one of the pensions into one that will pay out enhanced benefits - but that involves filling in a form (which asks for details re incontinence etc) I am fortunately fine at the moment - though - as all have the symptoms of not being able to do too much (unfortunately) without needing rest and more rest afterwards !

Any info gratefully received !

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Thanks Sadie, I'll give them a go then.

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Hi, with secondary bc miaonline are by far the best and cheapest!! Happy holiday.

Sadie Xx

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Thanks. I know it's been discussed somewhere but can't find where. If you google it there are companies offering insurance without medicals for all kinds of conditions, including cancer but I don't want to be ripped off.

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Hi Crawfo

Am not sure where this was discussed on here but i got mine with insure pink even though will be travelling very soon after chemo , also been told miaonline is good too but my cancer is primary. A friend of mine with secondaries got a good deal with insurewith.com it can be done online but she found it easier to call them, they tend to deal well with longer health issues .Hope this helps

Sal

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Sorry to be a pain because I know it's already been discussed but I can't find it, can anyone point me in the right direction of the info on holiday insurance please. I've been offered the use of a holiday home in Goa by a friend of mine, all I have to do is pay flights but I don't know if or how I'll get insurance.

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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 🐵 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

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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

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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.

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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

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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.

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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

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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

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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

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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

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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

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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

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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.

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

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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.

http://www.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

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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

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

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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

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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

Member

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.

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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.

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Hi crawo64,

No problem at all...really sorry your not well.. Awful when u don't feel well, hope u are feeling better very soon.

If u need any help just send me a mail or give me a call...

Love Tracy xxx

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Hi Mackers

Sorry, I wasn't ignoring you. I've been quite ill with recurring bouts of sickness and diarrhea so haven't been on here for ages. I'm still not 100% and not up to doing anything about anything at the moment. I'll pm you again when I'm feeling a bit better if that's okay.

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Hi Mackers,
I'm no expert but I think if you've worked as long as you have you would probably get the contributions based ESA rather than the income one.Contribution based one should mean they don't take your husbands income into account but they do if it is income based.
Good luck!
PS. Have you considered DLA as well? That is not means tested either.
Julie x

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Hi

Sorry I hvent gone into this yet as still getting sick pay. Does it matter how much your husband earns are u still eligble for ESA (sry if wrong name)? I have worked for the last 24 years so have made all contributions, but does husband earnings effect it?

Thanks everyone.

Tracy xxxx