Most people diagnosed with cancer will be affected financially. They may not be able to work while having treatment and can face increased costs from travelling to appointments or higher heating bills. Often, money is their biggest worry. I’ve been working as a Macmillan Cancer Support welfare rights adviser since 2015, helping people cope with the financial impact of cancer and the effect this has on their emotional wellbeing.

Speaking to people who are struggling can be challenging, but helping someone access vital support or navigate the often-intimidating world of benefits is incredibly rewarding. In the past four years, I’ve helped countless people whose money worries have become extremely distressing at a time when they need to focus on their health.

Over the years Macmillan has received more and more calls from people with cancer who are struggling with Universal Credit. Our welfare rights team, which is funded almost entirely by donations, continues to work hard to meet the demand. The need for our services is urgent and growing; last year we helped over 2,000 people access Universal Credit.

Universal Credit was created to streamline the welfare system and help move people into work. On paper it should work well, but increasingly I see that the system is forcing people to jump through confusing hoops to access the money to which they are entitled.

Universal Credit is an online system, with people expected to make and manage their claim online – but this presents a challenge for many people with cancer. Lots of the people that I help are visiting hospital for regular treatments and are without easy access to the internet, while many more may need to travel to get online at a time when they should be concentrating on their health. Cancer treatment can make people feel muddled, confused and fatigued, and for some completing a complex application form can be too much. I’ve known people who don’t claim Universal Credit at all because the process is just too complicated.

On top of this, there are strict rules within Universal Credit about consent. This means that advice services like Macmillan can’t act on someone’s behalf or complete their claim for them without written permission or the person being present. This can make it harder for us to support people with their application. Universal Credit does have a telephone support line, and a home visiting service, but these options can be very difficult to access, even for those who are very unwell. This can delay a claim – and that vital payment – even more.

Most people also need to attend a Jobcentre, either to complete their Universal Credit application or to meet with a work coach. For the people I help going to a Jobcentre can be distressing. They may need to travel long distances and, if they’re having treatment, being in a crowded place could put them at risk of infection. Not only that but many people living with cancer, even those who have a job when they are diagnosed, worry that meeting a ‘work coach’ means they will need to return to work before they are ready. I’ve supported some people who’ve been told they have to meet their work coach to talk about applying for jobs, even when they have a doctor’s note saying they are unable to work.

These problems can be even more difficult for people living with a terminal cancer diagnosis, and I see these problems day in, day out.

Recently I supported someone who was already receiving another benefit – Personal Independence Payment – under special rules for people with a terminal illness. This should have made it simpler and quicker to receive Universal Credit, because they already had a form from their doctor explaining their condition. But when they applied, they were told they would still need to go in to the Jobcentre, even after they explained they were terminally ill. This did not need to be the case and led to so much additional stress and worry. This person had to travel a long way to get to the Jobcentre, taking precious time away from being with their loved ones.

Once they’ve managed to get through the stressful application process, people with cancer still have to wait five weeks before they get paid. This can be incredibly challenging as many of the people I work with don’t have savings and so find themselves in debt almost straight away. Often people have to take out advance payments offered by the government to manage, but then fall into debt further down the line when they have to pay them back.

Many people continue to struggle once they are receiving Universal Credit. For the first three months of a claim, Universal Credit can be as little as £317.82 per month. After this, some people with cancer who are having treatment will get a higher amount, but even with this some continue to struggle to pay their priority bills and essential living costs. The move from weekly to monthly payments under Universal Credit is also challenging for many, and the most vulnerable can be hit the hardest. There have been times when I’ve had to refer people living with cancer to foodbanks because they are in such financial difficulty, and the amount they have to live on is in reality not possible – it can be a heart-breaking situation.

At Macmillan we’re calling for the five-week wait for payment to be shortened, and changes to rules around consent so that Macmillan can directly help people with their applications. We also want people living with cancer to be guaranteed access to a home visit if they need one, to help them complete their application. These changes would make such a difference to the lives of the people I support, helping them get access to the vital financial support they need, when they need it.

Hazel Slow is a welfare rights advisor at Macmillan Cancer Support

Anyone in need of welfare advice can call Macmillan’s free support line, which is funded almost entirely by generous donations, on 0808 808 00 00 (Monday to Friday 8am to 8pm) or visit www.macmillan.org.uk