Just had letter stopped ESA. How do I cope now?

Hi can anyone help diagnosed dec 09 2 ops chemo n rads finished in aug am divorced hav a 14 yr old daughter n hav been getting help from ESA went for a medical a few weeks ago and just got aletter today sayin thev stopped it yestoday. I’m still not feeling great get very tired get out if breath goin upstairs am seein lymphodemia nurse for arm n hav got a swollen n painfull breast so goin t hav sum massage but hav had a bad dose of bronchitis which I’m havin trouble shifting. My job is a mobile hairdesser n I’d dont feel up to it yet but I’m now worried if thers any help I can get is ther any other support bein Th weekend thers no one t ring n my ex husband hasn’t paid me any maintenance for 5 months so I’m getting stressed. Any advice would be appreciated . Rozita xx

Hi Rozita,

The very first thing you should do is write informing them that you wish to appeal the decision. After that you need to write a formal letter outlining in detail why you feel their decision was wrong and why you still need ESA. Make sure that you use your worst day to describe your situation.

I’m on the old incapacity benefit due to an ongoing problem and I’ve had to appeal twice - both times the decision was overturned in my favour. My GP supported me though the process and he told me that of all his patients who had to appeal only one person didn’t keep his benefit and that was because he genuinely could return to work.

You might also want to talk to a Macmillan benefits advisor - they can be very helpful in situations like this.

I hope it all works out!

Nymeria xx

Hi Rozina

I haven’t posted for ages but I feel for you and would like to offer you some help. I’ve had to appeal to keep my benefit. Here is my experience. Firstly, I didn’t even have to write and appeal - I phoned them and told them I was disgusted. The lady asked “was I phoning to appeal” to which I said “Yes”. She asked me quite a lot of questions which I answered as the worse case scenario - you must make sure and do this otherwise they may not overturn their decision. She then said they would be in touch at a later date. This they did and I was given the benefit. Secondly, seek help from anyone within the system who knows you well and can be put down in the DWP paperwork - MacMillan nurse, Community nurse, GP etc. For me, it was my Community nurse who was prepared to stick her neck out and help me. My oncologist said women with primary breast cancer are not entitled to DLA so I didn’t seek help from him on any benefits matters. My GPs were hopeless. Even if you don’t have a Macmillan Nurse at the present time, you could make contact with one. Macmillan advertise widely as helping people with financial problems so they may be a good one to contact.

I hope you manage to win your appeal.

All the very best of luck.


I would highly recommend getting advice from Macmillan. I was diagnosed shortly after we had started a small business and I couldn’t get Incapacity Benefit or even the lowest DLA payment (a very callous GP in my practice actually told the DWP I wasn’t sick enough - after he made these comments I spent 4 months in bed whilst on Taxotere as I had extreme side effects and ended up in an isolation room).

6 months after I was diagnosed I contacted Macmillan, but not about benefits. It came into the conversation that I wasn’t getting any and they told us we should have been advised to try for Working Tax Credit in my husband’s name. They sent us the forms and we got turned down first time, so Macmillan said to try again and to change the way we had filled some of the bits in. Second time round we got £96 a week, an absolute godsend as we were eking out savings by this point. It really helped us with the basics and we were very grateful. The DWP are notoriously bad for not giving people the right info.