Have you been diagnosed with a brain tumour? Order your free information pack.

My benefits experience

A guest blog from Jason about his struggle to get the benefits he is entitled to after being diagnosed with an Astrocytoma brain tumour.

My name’s Jason and I was 23 when I was first diagnosed with an Astrocytoma brain tumour.

I was suffering with seizures, which weren’t yet controlled, so I couldn’t carry on working. I’d been working for years towards my dream job and finally landed it when suddenly I had to quit. To support myself, I applied for Employment Support Allowance (ESA) which helped so much towards my living costs. But it wasn’t enough to cover my medical costs.

Searching for support

In late 2017, I heard about Personal Independence Payment (PIP). I applied and told them everything about my life since diagnosis and the difficulties I was having day-to-day. I was struggling with anxiety when I went out, because of my seizures, and was experiencing memory problems. I’d often go out and get confused or forget what I went out for, so I needed someone to go with me and help.

An assessor came to my house and asked me questions and did mobility tests, like push and pull my arm/leg towards him. When my results came in I was surprised I scored zero on everything and some of the difficulties I’d explained had been ignored: they were only interested in my physical mobility, not the invisible problems so common for people with a brain tumour, like me.

Armed with knowledge and given guidance

I didn’t know I could appeal, so I didn’t ask for them to reconsider my application. However, luckily, I was in touch with The Brain Tumour Charity and Sarah, a member of the team, asked me one day if I was on PIP. She was surprised when I explained about my previous application and told me to apply again.

Initially, I was worried about reapplying – at the time of my first application my seizures weren’t controlled yet and I’d just come out of surgery, so if I hadn’t got it then, I thought I’d have no chance now. But Sarah said this wasn’t true and her and Denise, The Charity’s Benefits Advisor, helped me with my second application. I felt much more confident and explained in detail all the difficulties I had and how they affected me. The assessor really seemed to understand my difficulties this time.

Yet once again I was rejected, because physically I seemed fine and they said there was no medical evidence. I went back to Sarah and Denise, and they helped me complete a mandatory reconsideration, the next step after a rejected application.

Medical evidence

I sent a letter saying how I disagreed with their decision, explaining the difficulties I faced and the impact on my life. I also enclosed medical evidence from my doctor and put this in an envelope with my name and address on each letter. However, once again I was rejected and once again they claimed there was no medical evidence.

Sarah and Denise told me to ring and question this. It turned out when they got my envelope they separated everything and because I didn’t put my National Insurance Number on each item, my medical evidence had been put on an ‘unknown’ pile – even though they had my name and address on and I said in the letter I’d enclosed the evidence. They put my appeal on hold so I didn’t have to start over while I resent my medical information and now I’m waiting as they review this.

Hope for the future

I’m pleased to say my application has now been successful and my PIP payments have been backdated to the start of my second application. To anyone who is going through what I did, make sure to send in as much medical evidence as possible, get letters from everyone you see from your GP and your oncologist to counsellors. And, most importantly, persevere. It’s only by keeping going and raising awareness that we can improve things.

Benefits Clinic

If you need any help understanding and navigating the benefits system, our friendly Benefits Advisor, Denise, is here every Tuesday from 9.30am-4.30pm. Simply ring The Charity on 0808 800 0004 any day to book your appointment.

The Price You Pay: The Financial Impact of a Brain Tumour

Our report, The Price You Pay: the Financial Impact of a Brain Tumour, was created with the help of 300 people, including those personally affected, and we are so grateful for your input.

These stories and experiences will help us drive change so that, one day, the cost of a brain tumour won’t be so high.

Read the report