I am posting this on behalf of the Policy and Campaigns Team at Breast Cancer Care.
Financial assistance after diagnosis?
We are looking for case studies to help us lobby Government. Changes to benefits are proposed that we believe may negatively impact people with breast cancer.
We’re specifically looking to talk to people who either:
· tried to claim Disability Living Allowance (DLA) within 6 months of a breast cancer diagnosis, and were refused
· claimed and received DLA within 6 months of a breast cancer diagnosis
· can talk about the impact that this extra money did or could have made on their lives and finances
· can talk about the financial strains they faced after their diagnosis (particularly within the first 6 months).
· Tried/wanted to claim Employment and Support Allowance(ESA) but were ineligible or refused the benefit.
Please call Kiran in the policy team on 0207 960 3468 to have a quick chat about your experiences. You can also email on <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6b%69%72%61%6e%2e%64%68%61%6d%69%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6b%69%72%61%6e%2e%64%68%61%6d%69%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> and I will call you back between the 18th and 25th August.
Was dx Jan 2010. Had no idea until I saw this that I could have claimed money; know nothing at all about govt benefits. Was self-employed and did not earn anything for a year so have HUGE debts now.
What a shame there is no advice about this at the point of diagnosis. :-(.
I suppose at the actual time of diagnosis, the focus is on treatment decisions and dealing with the cancer; money worries take a bit longer to hit and you’re not in much state to deal with them rationally till the clinical situation is stabilised. If you were employed, it’s when your sick pay runs out that the bank, dwp etc gets involved and this takes between weeks and months depending on your employer, contract etc and of course what time you have to take off for treatment or if you are unable to return at all, or need to make permanent changes eg reduced hours, lower grade.
I think a written info pack and/or online stuff that you can access later (probably referring to it many times!) as the fog clears, or which someone else can get to on your behalf, would be very useful. It is all very confusing.
Yes, even those of us lucky enough to be employed with good terms of employment can face money worries. I had full pay for six months off sick but there’s no way I could afford to drop to half pay after that so had to go back to work less than two weeks after finishing rads, and that was including taking a week’s leave.
I have a little bit of sick leave at full pay left this year but I didn’t dare use it all in case I’m ill again within this twelve month period.
The fact that I’d only had two days off sick in the previous eleven years of working here had no impact at all on how much sick leave I can take now. It doesn’t seem very fair when I consider how much time some other people in my office have had off over the years.
Sorry to hijack the thread and I know I’m very lucky compared to some, but I needed to get that off my chest!
When it comes to changing jobs though Jane there is a world of a difference between eighteen months disruption for various cancer treatments after fifteen years with only two days off, compared to those who always take an extra week with “some-bug” whenever they go on leave and can be predicted not to turn up the friday before a bank holiday weekend! Your good record so far will also have affected how sypmathetic or not your boss is to the little things that are at her discretion. Bosses aren’t stupid and there are ways of making that clear when they have to write a reference.
Hi
My primary dx was Feb 2009, second suspect primary Dec 2010 and then got dx with secondary in my liver March 2011. My friend completed my application for DLA under special conditions which was approved in April 2011. This has been extremly helpful as you can imagine with the cost of having cancer. Could have done with some back in 2009 when having chemo, op then radiotherapy. I have been extremly lucky to have been give 6 months sick leave 2009 again late 2010 and 4 months at the start of this year and as a single parent I live with the worry about what will happen if I get ill again and unable to work
My primary dx was Sept 2010 with secondary to liver the following month… shock does not even cover it as consultants were convinced all was okay. Only had a 2.5cm with all margins achieved and 2 lymph nodes infected but I was unlucky! Applied for DLA with support from Macmillan and was awarded within 3 weeks. It has helped enormously. I am extremely positive and determined to live life to the full.
I am a little confused can you only get financial assistance if you are working. A gentleman from MM came to see me and advised me to ring another MM person. I am on pension but the Macmillan nurse who I rang just said if my pension was above a certain level I would not be entitled to anything. I have had chemo, mast and full lyphy clearance and radiotherapy and have to pay someone to clean my house, do my garden and also my ironing as my arm is too painful to do these things - it is not easy on pension. Should I be entitled to any help?
Hi All
I have finally given in & applied for DLA, It has taken me ages to make this decision as I have always had strong opinions on people claiming when they are not in need. The local CAB helped me complete the form & I was exhausted after it. so now I wait for up to 12 weeks to see if I will be awarded it. I was DX primary in 08 with 2nd dx in 2010 & recent spread which has left me with very little energy & major depression. I feel sad that I have been through much but have to almost beg for DLA, I acknowledge that you have to prove that your are " in need" but I do not think people in general realise how much money it costs you to be ill, espically if you have to travel any distance for treatment.
I will let you all know the outcome of my application.
hugs for you all
Is everyone entitled to disability allowance who have been diagnosed with breast cancer? Nobody informed me about this. Is there any charity that can give financial advice?
Here’s a link to Macmillan cancer support, the webpage you will be directed to contains information and advice about financial help and benefits available, they also have a helpline you may wish to call for more advice and you can access the number via this link too:
Just to let you all know that I have been awarded DLA only had to wait 4 weeks for it, it has been awarded for a year and then I guess I have to reapply if required. For now it takes a fair bit of pressure off me. I really enjoyed going to the supermarket and stocking up the basic food stuff without the worry of can I afford this, even treated myself to real butter… ( one of to celebrate)
Hope this helps others who are thinking about applying and being put off for whatever reason.
I am retired, with my state pension and an occupational pension.
One of the worrying aspects of BC for me has been the financial implications of travel - breast clinic 80 mile round trip, radiotherapy unit 150 mile round trip, surgery and some review appts 30 mile round trip.
Total cost around £2000, mostly over a few months.
How did I afford it? Used cash from savings, which meant there wasn’t going to be enough capital to clear interest-only mortgage, or to fund further cancwer-related expenses… so I sold my house and downsized.
elginguine - Well done on your successful application for DLA its such a nightmare trying to get this benefit, I think the government need to make a new benefit for the terminally ill instead of us secondary breast cancer patients having to apply for DLA should be TLA, they awarded me the DLA after a 5 month waiting period for one year which runs out soon and I’ve had too re-fill in the dreaded forms and get my GP to supply a DS1500, its utterly ridiculous and full of contradictions.
Grumpy - Sorry to hear about your financial strife, such a shame you had too dip into your savings and downsize your house, seems crazy to me and makes me angry I expect you worked all your life paying into a system that in your hour of need has let you down, did you apply for a macmillan grant? only I’m sure there grants are for such circumstances.
I received no financial support at all even though i got made redundant during treatment. Rads was an hour away so the amount of petrol money ive had to use has been ridiculous on top of everything else. I tried to claim and for dla and a grant to cover petrol but have had nothing at all so had to go back to work part time while i was having rads and back full time straight after treatment finished
I saw a macmillan benefits advisor, lovely chap, who works with the CAB, and he looked into it for me. However my income from pensions was just a smidge over the limit, and the savings - even though spoken for to clear the mortgage - were too high as well. So faced with the knowledge I would need £120 per week for 6 weeks for travel to radio, and because I was concerned about any future expenses, I did the downsizing bit.
AND IT’S THE BEST THING I DID - it occupied my mind, I moved the day before my consent appt, had the builders in during radio, so rented a friend’s holiday flat for the duration (another £200 p wk) and put the dogs in kennels for some of the time (£100 p wk), I’ve got delightful neighbours, live in a pretty street with a green and a brook down the middle, handy for the Health centre, the park, Big Walks, the shops etc in the village, and best of all I don’t have to worry about money anymore.
and the radio was only 3 weeks, new regime just started at Preston…
I know I was fortunate that I could use the downsizing scenario to relieve financial pressure (no partner, no kids to accommodate)and honestly I would encourage folk to look at it as an option.
Apparently there are volunteers who do hospital runs, and some ambulance provision but hard to get hold of etc. And friends couldn’t help out - working- and anyhow I wasn’t going to ask people to drive me if I couldn’t give them the petrol money of £25 per trip. And it’s not my fault the NHS decides to put the radio unit 75 miles away!!!
I was turned down for everything after I was diagnosed in 2006, we had no real income either as we had started a business 6 weeks earlier.
My application for DLA was turned down as the DWP sent a letter to a GP at my surgery and he wrote back to them to say in his opinion I wasn’t sick enough (yeah, right - I went on to be confined to bed for the best part of 4 months, then I was in isolation for 7 days at the end). I was turned down for Incapacity Benefit as I had taken some time out of work to look after my late father who had dementia, he died 12 months before I found out I had BC. During my time as a carer, somebody at the local Jobcentre messed up my application for Disabled Carers Allowance and told me I had to try claiming JSA - this resulted in me ending up with a 3 months gap in NI, hence no entitlement to contribution based state help. I had to chase the application up as it went to 5 different offices and they forgot to send the letter out telling me I had been refused assistance. When I contacted the DWP in Edinburgh, I was told by the person I spoke to that breast cancer was not an excuse for trying to access benefits. I was absolutely gutted by the whole episode, especially as I felt so vulnerable.
I contacted Macmillan via their website for something related to a campaign about benefits and somebody contacted me who said we should have been advised we could get Working Tax Credit for having a start up business with hardly an income. They got us £96 a week (but we were rejected first time and reapplied). However, as we weren’t told about this by the DWP we missed out on 8 months money and they only backdate for 3.
It’s my opinion that the whole system is designed to put genuine people off claiming.
How DARE anyone describe breast cancer as ‘an excuse for trying to access benefits’ - that is outrageous!!!
These problems will continue until staff with higher personal skills and more comprehensive knowledge are employed by these agencies - and where will they be found for the low salaries paid?