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.