Financial support/benefits for new secondaries dx

Public Archive
1

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 macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsAdvisers/MacmillanLocalBenefitsAdvisers.aspx. 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

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Alison I think this is a really good idea to have this as a sticky - even in the short time I have been here I’ve seen the same questions pop up again and again.

I haven’t got into this issue at all as I wasn’t working before dx - so I thought I would ask for others in the same situation - I assume these benefits only apply to people that are / were working? The idea of a Blue Badge is very appealing - is there a physical requirement, ie unable to walk over a certain distance perhaps? I would feel a bit of a fraud as 90% of the time I am fine, but on bad days and treatment days it would be lovely to be able to park near the hospital.

Finty x

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Hi finty

Yes, there are questions on the DLA form that you have to fill in regarding your mobility. Here is where it is especially valuable to have a Macmillan benefits person to advise you. I can’t remember the cut off distance that is the yardstick, perhaps 30 metres? Which really isn’t very far at all. I was virtually unable to walk at all at time of sec diagnosis and so it was easy for me to answer the questions without any qualms, and for a good 18 months - 2 years after that I was either on crutches or having/getting over a hip replacement op. Now, like you, I feel like a fraud much of the time now, but Macmillan benefits advisors I have spoken to say that I am still fully entitled to the blue badge and that it counts for the days when you are at your worst even if those days are few and far between. And there are days when I am really thankful for the blue badge. (I do still tend to get out of the car and limp a bit dramatically on my good days, though, as I don’t feel entirely comfortable with my ‘disability’. Silly I know!)

You would certainly be eligible for DLA - it has nothing to do with your employment status - with a DS1500 it would automatically be higher rate for care regardless of whether you actually spend money on care. And the mobility element of it would depend on how you answer the questions. Without DS1500 it would be either middle or higher rate care depending on how you answer questions. Well worth having the DS1500 as it bypasses a lot of stuff.

Anyway, do apply for what you are entitled to. Even if you end up spending the extra on treats, meals out, cinema, etc, surely it all helps to sweeten the pill of our bc!

Best wishes.
Alison xx

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Thanks Alison - that is really helpful. I’ve never had a Macmillan contact - as I’ve been treated privately so far, it hasn’t really arisen as an issue. But for my longer term treatments I will be going back into the NHS, it is something I must organise. Many thanks again.

finty x

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Alison says in her post:

“Anyway, do apply for what you are entitled to. Even if you end up spending the extra on treats, meals out, cinema, etc, surely it all helps to sweeten the pill of our bc!”

It gets even sweeter. Disabled concert-goers (and one companion) receive a 50% discount on all ticket prices (except Arena and Gallery areas) for concerts at the Royal Albert Hall and Cadogan Hall. To claim this discount call the Access Information Line on 020 7838 3110 if booking by phone. I think this applies in cinemas too.

Dawn
xx

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Hi all

If you live near Manchester and like classical music, you might like to know that the Bridgewater Hall also offers 50% off your ticket and a companion’s ticket if you are in receipt of DLA. Ring their box-office for details – I just had to show them a copy of a recent DLA letter, which they photocopied and now keep on file.

Marilyn x

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Hi Alison, I think it is a great idea to keep all the info together, and keep it as a sticky, as finty says the questions do seem to keep croping up.
I had a panic attack when asked to fill in another form after my initial three years for DLA was up, and if it wasnt for Dawns help in pointing out question 4 I might not have had it carried on, she told me to think about the best person who they could ask about my BC and how it affects me, as it is not always your onc. The other thing that crops up a lot is travel insurance, I know on one thread I read that Dianne{Jodie1} put a list together of ones that she had used.

All the best to all you ladies Roz xxx

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I must confess that whilst I think that gathering all this information is good, I do have some problems with this thread and its implication that everyone with secondaries should be claiming DLA.

To quote from the Directgov website:

“You may get Disability Living Allowance if:
you have a physical disability (including a sensory disability, such as blindness) or mental disability (including learning disabilities), or both
your disability is severe enough for you to need help caring for yourself or someone to supervise you, for your own or someone else’s safety, or you have walking difficulties, or both”

Alternatively, DLA can be claimed using the DS1500 form under the special rules “if you have a progressive disease and you are not expected to live for more than another six months”

I have several areas of metastases to my bones, and am undergoing chemotherapy, but cannot honestly say that I fall into the physical disability or less than 6 months to live categories at the moment, and I am sure that I am not alone.

In a climate of limited resources where we are only too keen to decry, for example, lack of funding for cancer treatments, I am surprised at the increasing promotion on this and other forums of the idea that we should all claim these benefits.

Am I the only one to be concerned?

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Wow geewhiz

I am so happy for you that you appear to be in the fortunate position of not having to worry about how to make ends meet. Many of us are not so fortunate. I remember the gut-wrenching sickening panic when I was first diagnosed. I was facing having a fixed term contract, that had been really promising when I took it on, not being renewed and was not in a position physically to seek alternative employment, either then or subsequently. I had worked full time as the main breadwinner throughout all my treatment for primary breast cancer, taking only a few days off each chemo cycle and bussing to my radiotherapy every day after work. But with my secondary diagnosis I went almost overnight from having been employed for all of my working life to being virtually unemployable. My husband’s salary was - is - not on its own enough to pay all our outgoings. I was sick with worry about how we would cope financially, and so it was hugely significant for us that I should be able to claim DLA AND Employment and Support Allowance AND whatever else I was ENTITLED to. I am sure I am not alone. My oncologist was delighted (if that’s the right word) to be able to help me by signing the DS1500, as he could see how worried I was on top of a diagnosis of metastatic breast cancer, and who knows, perhaps at the time he had reason to suspect that I might not afterall be “reasonably expected to live for more than six months.” (That’s the real quote from the Directgov website, by the way - you omitted the word ‘reasonably’ from your quote.)

I sincerely hope that you, and many many others, will live for a lot longer than 6 months. I have lived for about two and a half years now since my secondaries diagnosis, but that’s not enough. I want to see my nearly-four year old grow up. I want to live to a ripe old age. But we all know that this disease can be so unpredictable. Who’s to say that next week, next month, any one of us won’t get further spread, or the cancer cranks up a gear, or the treatment we’re on fails, so that the chance of us living for less than another six months becomes much more real. I for one am glad that I have my DLA in place now, as that’s the last thing I would want to be organising with less than six months to live.

And what is the point in living in a progressive society such as ours that has a culture of supporting those in need, of contributing all the while you are working, and of not then seeking help when you need it and are entitled to it?

Best wishes.
Alison

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Alison

I couldn’t agree more with your last posting. I think we’ve ‘conversed’ about this theme on another thread! When I went to BCC’s secondary courses earlier this year there was a Benefit’s specialist who stated that, contrary to many reports that we hear, millions of pounds worth of benefits are left unclaimed because people are unaware of what they are entitled to.

Cancer is an extremely costly business for a patient. The long term care needed by those of us with secondaries brings along with it many costs. I’m not working due to returning to the UK after a period working abroad and being hit with the secondary news as I was just about to apply for work. The DLA provides a much needed boost to my finances. Without this extra money I would really struggle. DLA has also enabled me to get a disabilty rail card which helps enormously with travel costs.

Some days I feel fine (though never as fit as I was before), others mean that I suffer quite severe fatigue. This, however, is not the point. Disability comes in many forms and the effects of a long-term illness are many and varied.

Obviously, it’s a personal choice whether to claim or not but the information should be there for all. There’s a lot of guilt associated with cancer and I, in the beginning, felt uneasy about getting financial help. Did I really deserve it? Is it right? I now feel that it IS just. The welfare state exists for good and valid reasons and the contributions we have made during our working lives mean that we have the right to apply for these benefits when our lives have been affected by serious illness.

Alison (2!!)

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I agree with you both. I am no longer able to work full time and without DLA we could not make ends meet.

My secondary diagnosis means that some days I am unable to get out of bed for physical and emotional reasons.

I too have worked all of my life and gone in many times when I shouldn’t have.
The term ‘reasonably’ as you say, is the significant one. There have been many people on this site, who have had progression and died in far less than 6 months. If your oncologist is prepared to sign a DS1500 on your behalf, that should be the end of it.
If you are in denial about your prognosis fine. Here is hoping that we outlive it 20 times over but there are no guarantees.
If you dont have pain, dont get fatigued, exhausted, despondent and emotional…dont apply !!!

Without my car, i could not get about and I could not work.
Somebody once said on here that DLA under the special rules should be viewed as the state retirement pension that you have contributed towards and will never have.

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Thanks ladies :slight_smile:

Alison x

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Thanks Juliet66 - I feel better now - the analogy between the state pension we won’t get and DLA is a fine one. I’ve been a higher rate taxpayer all my life but still felt ‘guilty’ claiming DLA (albeit for my depression and the fact I can’t get out on my own etc etc, but aggravated by inabilty to move in the mornings courtesy of Arimidex!)

Nina

14

Geewhiz says “I must confess that whilst I think that gathering all this information is good, I do have some problems with this thread and its implication that everyone with secondaries should be claiming DLA.”

Actually Geewhiz I do think everyone with secondaries should be filling out the forms under Special Rules to claim DLA. It is down to the Department of Work & Pensions to decide then who is entitled.

It is of course a great help to those who struggle with finances through not being able to work and incurring many additional expenses. I love Juliet’s reference to “DLA under the special rules should be viewed as the state retirement pension that you have contributed towards and will never have.” I must be doubly blessed 'cos I get both DLA and my state pension. (you can’t make a claim if you have already passed 65 years of age).

What appals me is that many people with 2ndary cancer do not know about DLA so since I discovered it some 4 years after my 2ndary dx I have made sure both here and on bcpals I make it known and will share my experience in the hope it helps others who remain in ignorance! I can understand why it would be difficult for oncologists & bcn’s to tell someone at the point of diagnosis because of the statement about not reasonably being expected to live longer than 6 months. That sort of talk can be quite scary. I think it can be quite helpful to share it on forums such as this where newly dx mets girls can read our discussions and know that many of us live beyond this deadline.

Dawn
xx

15

Hi,

I quite agreed with you Juliet that I see getting the DLA as the pension contributions I paid in but know I’ll never get. It took me months to apply even through the onc and doctors advised me to and my prognosis was poor. So there is a mixture of guilty and the reality of the awful disease.
I’ve worked all my adult life as has my husband, as Alison said if it help sweeten the bitter pill of BC and eases the financial burden.

Thank - you for the info on the theatres we love going up there.

One more thing that may benefit some is if you have terminal cover on your mortage insurance. There was a thread here, the onc mention at the time of sec dx, but I think taking in the dx and prognoses was too much. I looked at our policy after nine months at the beginning of the year and its says if you have a terminal illness and have less than a year to live then they will pay off your mortage for you. I phoned my onc and asked whether she thought I could applied, I desperately wanted her to say no but she said she would write a favourable letter because of the unpredictable of the illness and my prognosis was still maybe a year if I was lucky. The up shot was the insurance pay off the mortage, I never been so depressed in my life and cried not because they paid it off but because it made me realise the reality of my situation.
I think I’ve spend my life feeling guilty and I don’t know why. My onc said to me thats why you paid insurance and you never think you’re ever going to use it so don’t feel gulity.

Hope this is of some help and you’re all keeping well.

Love

Chris
xxxxx

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Hi Ladies, Nothing new to add. I didn’t know anything about DLA when I was diagnosed and I too was worried sick about how I was going to pay my mortgage and loans off. It has made such a HUGE difference to my mental state and I could then concentrate on the rest of my life and my treatment.
I am in receipt of the higher rate of DLA which means I can if I wish apply for a car under the MOTOBILITY scheme. The part of my allowance is taken off each month before the balance is paid into my bank account. I only need to put in fuel. This also means that I do not need to worry when I need new tyres, an MOT, or a service as this is all covered for me. The car is my lifeline and means I can have my independence and gets me out of the house. This is so important as I have had to give up work and I need the company of other people and to go to the shops of course!
The BLUE BADGE SCHEME has also been such a fantastic thing for me. I can get nearer to the door of shops especially on my “bad” days and can park in the centre of town at parking meters for free and even on double yellow lines sometimes. But working out where and when you can and cannot park takes some stamina! It is never very clear.
Thank you for starting this thread. Val

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Hi Ladies, Just like to add that I agree with everything you are saying Alison, I am sure that we would all rather be working than having a terminal illness that affects us all in differant ways and means that we have to claim DLA. I to have worked all my working life and paid my contributions untill being hit with this disease and all it brings with it, and yes how Juliet sees it as getting the pension she will never get is a great way of looking at it and I agree with her. When I asked my doctor about DLA she said that no-one in all probability would employ me now, and she is right.

Keep up the good work Roz xx

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Hi, Just wanted to say,I too agree with all the comments barring Geeewhiz.
I have just applied for ESA & DLA, thanks to my Mac lady, 8 months after secondaries dx. My wages were being used to pay the mortgage, albeit at a higher sum than was nec, to try and get it paid off in a shorter time so that we could retire and enjoy life,hopefully a bit earlier than the norm. This is now probably not going to happen, all because of cancer.
I probably fall into the category of not actually relying on the money to survive, but we would have to cut back on things at a stage in ours lives we don’t want to…all because of cancer.
I will not be able to return to my job, as it is far too strenuous, although I am hoping to find a part time job somewhere if I am able and if anyone will take me on?
The benefits will not be equal to my lost salary, but they will mean I won’t be as worried about the heating bills (high due to me now being at home instead of work). It will also mean I can still buy things for my granddaughter and family if I want to.
I’ve been very careful with finances all my working life, paying into pensions, not using credit, etc. and feel that whilst the benefits I can legally claim in no way make up for this dreaded disease, if they make life easier & more comfortable then, “thanks very much!”
I didn’t know about the railcard or car scheme, so thanks for that info.
Sandra x

19

Dear All

breastcancercare.org.uk/employ/

This link takes you through to our Employ literature, explaining what your rights are and what we are campaigning for at the moment.

Best wishes
Poppy

20

Thanks to you all for the information. I think it would be good to make it available to all of us in this situation - even if someone doesn’t want to take it further. I was diagnosed with one small secondary tumour on my hip 18 months ago (9 years on from primary breast cancer). At a Breast Cancer Care day in Glasgow, all the other women had applied and were receiving the benefits and had Blue badges. I asked a Benefits Advisor in the Maggie Centre in Edinburgh and she made me feel a complete fraud and asked me lots of questions about mobility etc. which I didn’t really know how to answer. I did get a one-of grant from Macmillan for heating and clothing, but didn’t take the other things any further. Have recently been diagnosed with secondaries on my liver and other bones, so am definitely going to apply again. I have 18 weekly chemo sessions and I can hardly imagine what I will feel like during that! My secondary breast cancer nurse is going to get the ball rolling for me, so fingers crossed. I don’t have a job, unlikely to get one now and have paid NI all my working life (now 59) and it would be fantastic to get some help. Bests wishes and love to you all