When I was diagnosed as having terminal cancer I was still working and enjoying it until I got a new manager who was a bully and decided right from the start, it did not matter how good my work was, she did not want someone with Cancer on the team. After a lot of bullying I needed to take time off to try and get to grips with some form of treatment. I applied for PIP and was advised to also apply for Contribution based ESA when I went onto half pay. I did this and as I had a terminal diagnosis I was awarded ESA and moved to the support group after 13 weeks. I was still getting harassed by my manager and the stress had caused my cancer to grow. I decided to apply for ill health retirement and the union said to do this early as it would take months. I applied and was told within 10 days that I had it which was, I thought, good. I had entitlement to another 5 months half pay which was more than my pension. However my manager wanted me to take the retirement straight away, told me lies saying they could then advertise my post (in fact the post was never advertised and my colleagues just had to take on more work). I worked out that with the ESA payments and my pension I was not too far off half pay and it would get the manager off my back. They also said that now ill health had been agreed I had to take it or they could dismiss me.
At no time did anyone tell me that drawing your work pension would affect getting Contribution based ESA and it didn't occur to me as I had still paid in the contributions over 30 years and I was on less money than if I had of been on half pay. However when I finished work I let them know (April 18) and was floored when they told me I may lose my ESA payment. If I had of known I could easily have kept my job going for the next 5 months and possibly even have returned to work as the bully of a manager left later that year. My payments continued and I needed the money so I spent it, Cancer is not cheap my bills have doubled as i was always working before so never needed heating etc, Car parking charges alone at hospitals has been crippling. I rang and wrote to the DWP 3 times from May to Nov 2018 as my payments had not changed.
Then finally I managed to speak to someone in November who told me my correspondence was on file just no one had done anything about it, I was being paid too much in fact my payments were reduced right down to £23 a week. Payments were changed immediately but I was now in debt to them for a few thousand pounds. I am still waiting to find out exactly how much and how I can pay it back. It is killing me as I have never been in debt before and should not be now.
So take care remember however small your pension is it will affect ESA payments and I am no better off in fact possibly worse off financially because I worked and paid into a pension scheme, then got cancer.
It is really stupid that at 59 with possibly less than a year to live and having been assessed as unfit to work I am now trying to find some work so I can pay off a debt DWP created.
I was very sorry to read your story and what you have experienced it might be helpful for .you to read through the following about Financial Guidance and support that Macmillans have to offer
Call Macmillans free on
0808 808 00 00
(Monday - Sunday, 8am - 8pm).
The Macmillan Support Line, staffed by trained experts, offers people with cancer and their loved ones practical, clinical, financial and emotional support. We have 5 teams here to help.
Cancer information and support (8am - 8pm)
This team answers each call, provides emotional and practical support, or can just listen if you need to talk. They will help find the best support for you, which could be arranging for you to speak to one of our specialist teams listed below, finding relevant resources online or support in your local area.
Cancer information nurse specialists (9am - 8pm)
This team of experienced cancer nurses uses their clinical skills to provide and talk through specialist information on symptoms and diagnosis, treatment, living with cancer, palliative care and end of life.
Financial guidance (9am - 5pm)
Our financial specialists are here to help you manage your finances, providing guidance in areas such as mortgages, insurance, pensions, future planning and more.
Work support (9am - 5pm)
Our dedicated team of work support advisers can help you understand your rights at work. They can provide information and guidance on talking to your employer and negotiating adjustments at work, and can answer questions on sick pay or taking time off. The team can also refer people with more complex needs to one-off legal advice.
Welfare rights (9am - 8pm)
Providing information on the benefits and grants you may be eligible to claim, our welfare team can advise on NHS health costs if you are on a low income or claim certain benefits. They can also find out if you're eligible to apply for a Macmillan grant to help with the financial impact of cancer.
Energy advice (9am - 5pm)
Here for you no matter who supplies your gas and electricity, our energy specialists can help to source funding if you are struggling with your bills.
When it gets busy we may not have someone available from our specialist teams but we'll get someone to call you back.
If you prefer, you can email us and we will reply within two working days.
Maz, the line is open between 8 am and 8 pm daily Monday to Sunday, calls to the support line is free from landlines and mobiles and you can contact the friendly advisors on
Although some advisers are only available during the hours shown above.
I would suggest that you give them a ring as soon as possible and see if they can give you some help and support
Remember nothing ventured nothing gained.
I hope that you can get some assistance soon
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They were very good when I applied for my benefits, I don't think we will qualify for any other financial support even though my husband is going to have to cut his hours to help care for me we will still not be classed as low income. We will just have to tighten our belts and get by. The problem re the ESA was that I had no idea it was not money we should not have and so I used it to make life a little easier. My neighbour has told me to stop worrying about it (easier said than done) and told me to tell them I will pay it back £1 a week.
I just wanted to highlight it to other people as no one at DWP ever told me.
Still speak to financial guidance as you maybe entitled to attendance allowance which is not means tested - but get some to help complete the form like Macmillans it Citizens Advice they are used to completing the forms as they are quite complicated.
Please do telephone support line you just don't know what they might suggest especially heating
Speak to the cashiers office at theh hospital they might be able to help with car parking charges.
I have made an amendment to my 2nd response
Thanks I think you have to be over 65 to apply for attendance allowance. I will ask McMillan but I am pretty sure everything is tied to low income and ours is just over the threshold. They don't take into account any dependents if they are not children. Lancashire don't even give any council tax concessions.
Hi, below 65 it is Personal Independence Payment (PIP). With a terminal illness you should be fast tracked. 2 components...mobility and personal care. Please get help to complete the form, there is guidance about how to answer and write about how you manage on a bad day.....approx £130 p wk if in the highest band on both
Regards, Lynda xx
Another day survived
Thanks Lynda I was awarded PIP and ESA contribution based because I had paid enough NI. But the ESA was stopped due to me taking my pension but if I had waited I would have got it at enhanced rate until I had to take my pension that was the issue.
It is not fair you have still paid it the money but don't get the benefit if you take your work pension.
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