Do you know, when I look back on all this from 5 years down the line it really amazes me what I had to put up with from people like the DWP, the local Jobcentre, and even to a certain extent one of two of the GPs at my surgery. When my husband spoke to a GP about me being turned down for DLA, she just said “oh you have to have practically no use of your arms and legs to get it”. I’m afraid my husband cheekily retorted there were enough people in her waiting room who unlike us had never paid taxes or NI (we live in an area where there a lot of people on benefits as a career move if you want to put it that way, also a lot of young single mums on benefits).
Hindsight is a great thing, but I like to think if I ever had the misfortune to be in the same position again I would kick up a huge fuss and complain.
I have had no finacial assistance at all - I work full time for the nhs (!) but only get SSP - me and hubby have a mortgage and to lose my wages bar 73 pounds a week has left us completly skint - and I mean really skint - we are not entitled to any help at all as hubby also works full time … for the NHS (!) I had 4 weeks off after my op and I am now off for 6 weeks wich has incorporated 20 rads… I am exhausted and very down in the dumps but am considering returning to work full time next week due to money problems against my GP’s advice - I finished rads last Wednesday. I have always paid into the system since the age of 16 - I am now 48 - never claimed all we need is a bit of help with a genuine condition - I am ranting I know but something is wrong when I am not the only one in this terrible situation.
Like you I felt very cheated by the system - had worked from the age of 16, never had kids so no breaks for maternity leave. 2 short episodes of unemployment after redundancy donkey’s years ago, but I always managed to get temp work. Even when I did my degree in my 30s I had a p/t job weekends and a f/t one in the holidays. We were both higher rate taxpayers when we lived in London and we had private medical insurance via employers then so didn’t really use the NHS much at all. It makes me wonder why we bothered being hard workers if I’m honest.
I was diagnosed with TNBC in November 2011, had SLNB in Dec & began chemo on 23 Dec. Had 2 x EC which made me desperately tired and dizzy; then 2 x Docetaxel which wiped me out altogther. I am 65 but had not then claimed my pension, because self employed (consultant).
I applied for DLA because it isn’t means tested and I am 65 - was immediately rejected. Had one tlephone call (this during EC) and the main concern seemed to be that despite having to hold on to doors and walls, I could get to the loo on my own. There was no follow up with BCCN, Dr or OH/carer. I asked for decision to be reviewed, by this time I was on Docetaxel and the SEs were really awful - including depression mainly because of TN diagnosis and fear - I could not have been left alone for any length of time and certainly could not have prepared food for many days during the cycle. The response was still that I was not sick enough and did not qualify. Still no follow up at all with Dr or BCCN or chemo nurse, or with carer.
I have all the documentation if you want it.
I dropped the appeal - could not face it during chemo.
Unfortunately the chemo did not shrink tumour so I had Mx on 28 March, and now awaiting rads beginning 30 April.
Very disillusioned about benefits system, have never claimed anything before and have paid masses of tax all my working life.
I agree with other contributors - these people have no idea just how ill BC patients are especially on chemo - they seem to think that it’s like taking pills and we should be happy …
Good luck with the campaign. Other people may need it more than I do, financially - it’s depressing that the sytem is so insensitively administered.
as a single mum of three when diagnosed 11, 8, and 5 i feel i could have recieved practical help ie free school dinners. My ex husband had severe bi-polar disease so couldnt help out fiancially or help with kids day to day. I work for NHS, so got full pay for 6 months then half pay for six months. I struggled , and was enforced to go back to work then. I had difficulty getting time off for herceptin, even though this was in my own time, because the health care at home team could only let me know what time they would come the day before. I had taken a reaction to herceptin so needed steriods and anti histamines with every dose, which made it prolonged and i wasnt able to drive after a treatment.
On chemo i suffered severe fatigue and infections, i was on Neulasta and felt terrible. DLA turned me down . Whilst i was on chemo my child minder AKA my mum was diagnosed. In fact the day she got out of hospital after mx i was admitted and my children nearly ended up with social services, (i am very proud to ask for help, but had to ask friends to mind my kids and dogs).
I feel there should be help in emergency and temporary situations. I had to sell my gas guzzler and buy a car much too small for us.
I feel the side effects of chemo, rads, herceptin, hormonal therapy are different for everyone. Just because i drove my kids 20 miles to school and could make them some kind of food, whilst sleeping in between all of above, i was not entitled to any help
i think the way cancer patients are treated is discusting iv worked my whole life and at christmas cut my hours to 16 (big mistake) i done this to be there for my children 7 & 10 when they got home frm school anyway long story short i found a lump in may and was diag with grade 2 invasive bc i worked right up untill the day before my op 31st aug since then iv had nothing but hassle my work wont pay ssp because i didnt earn enough and the dwp said i wasnt entitled to esa as i got working tax then when i phoned working tax they said i wasnt entitled to working tax because i didnt get ssp or esa so now im left with £101 child tax and £33 child benifit to try and live on while i try to sort things out the welfer rights told me not to worry or stress myself hard not to with rent ,bills and 2 children to feed i wanted to go back to work but my doc wouldnt let me said i needed more time to heal and get used to the effects of tamoxifen also i start rads in a couple of wks so i dont know how i’l feel it just makes me mad when they keep saying dont stress or worry concentrate on getting better i feel as they just dont care if you have bc we didnt ask for this and im sure we would all rather be at work and healthy they dont take into account the emotional and mental effect of bc more help should be made available we shouldnt have to worry about this sort of stuff while dealing with our illness.
How do I find out about financial help as I am self employed and have just been dx because of the work I do I am unable to work due to it being quite a high emotionally related job and my emtions being all over the place just now. I only started the business in April this year so have not had chance to accumulate finances to keep me through this. I will have the added expense of travelling approx 18 -20 miles to hospital for treatment as this is the nearest one that does it even though I have a hospital 5 minutes walk from my house. Feeling a bit concered about how i will manage to keep up with rent council tax etc while not have any income
Hi
my cancer journey has eaten all our savings…we have put our lovely mews house on the market to buy a smaller place to release the equity…in this property climate we are likely to lose a lot on it but we are still mortaged for another 5 years…I tried to claim various benefits and was so messed about that I just gave up…there should be more support from the govt and info…we have never claimed benefits and didn’t really know what we were doing when we tried to…I was told that I could claim travel expenses but the people in the office at my local hossie made me feel really small…on top of chemo I couldn’t cope with that then when I eventually gathered all the required info and sent it in…they lost it!!..hence easier to sell the house…
I am in a more fortunate situation than many here, but my diagnosis has still had a huge impact on our finances. My income stopped on the day of my first chemo. They have finally agreed I will get SSP, but I have had nothing since the end of August. My husband is self-employed and has had to take time off work. Immediately we entered the system we were hit by travel and car parking costs (our hospital charges between £1.80 and £4.20ish per visit depending on how long they make you wait - but once I started chemo we were able to pay £25 to cover the next 20 visits and this helps a lot), then there are the NHS wig charges and having to buy over the counter remedies for any SEs… Our GP and hospital always encourage you to do this whenever possible, which I understand because they also have money worries. We are not entitled to any help with finances because we have savings, but the cancer costs eat into this and the future is a worry because my OH and I do not have much in the way of a pension to look forward to. Our savings were supposed to supplement the state pension, but may well have disappeared by the time we get there.
I’ve been off work since november and I get 6 months full pay and 6 months half pay. The job centre benefits department informed my OH that because I’m having radiotherapy I would be entitled to a small ESA payment but I think this is wrong. A friend of the family has ovarian cancer and works as a manager and the Macmillan nurses have informed her she will be entitled to DLA is this also right ? I’ve been on macmillan website but it is not very clear if you are entitled if employed – very confusing.
Dear Lady in red, I suggest that you telephone McMillan to have a chat to see if you could be entitled to DLA. You can indeed be working and receive DLA but you first need to complete an application form and it depends on how much help you need to get around and also if you need any personal care… It is NOT means tested. I have heard that some people have been refused DLA but have then gone on to appeal against thwe decision. I do not know your personal details so I cannot say if you will automatically be entitled but a chat with McMillan or your Breast Care Nurse would point you in the right direction. You can also ask your GP or Consultant if they will support your application. Worth applying for but not sure if you would or would not be successful especially with all the new changes that benefits are undergoing. Good luck. Val
Lady in red…as Val says you can be working and still be entitled to DLA.
Go to: benefitsnow.co.uk/apply/dlaapply.asp
which explains about claiming. Worth getting the application form and sending it in.
Hi, you might be entitiled to some ESA, it depends in how much your half pay is. You can get a non-means tested contribtion based ESA payment if you are getting no, or very little sick pay. DLA requires filling in a form about the effect your cancer has on your life. You definitly need help filling it in. Macmillan are very good at this - phone them for advice and, if you are entitled to anything, they will help fill in the form.
any advice?
i am due to have my op in 2 weeks…I have about 4 weeks left on full sick pay and then it will reduce to half. I am single and work full time. When it reduces to half I will not be able to cover my bills, mortgage and rent. I have no savings to fall back on. Obviously I don’t know how long I will need to be off work or if I will need chemo. I definitely have to rads has anyone got any advice on if I am entitled to anything?
debcully
I’m not very good at navigating this site really but up to now haven’t found a section that relates to both financial and marital
problems. I was wondering if anyone could give me advise on separation whilst coping with the return of cancer. I think to separate
would be may best option emotionally, financially not sure I could cope as I’m not able to work at the moment and for the foreseeable future.
Macmillan have lots of advice on financial issues during cancer treatment, here’s the link to their factsheet on the subject which you might find a useful read:
Debcully - you might try contacting your mortgage company to see if you can arrange a ‘payment holiday’ during your treatment. Some lenders are amenable to this. Same things goes with utility companies. I’d also give Macmillan a call and speak to their financial advisors to find out if you’d be entitled to any financial help. Best of luck.