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Help patients cope with the financial toll of cancer

A cancer diagnosis is difficult enough, but for many people it also leads to severe financial hardship.
cancer

A cancer diagnosis is difficult enough, but for many people it also leads to severe financial hardship

Macmillan Cancer Support estimates that cancer costs an average of 570 a month for more than eight in ten patients, with working parents of young children hit hardest of all.

The costs associated with the disease include travel to and from hospital appointments for consultations and treatment, a rise in household bills caused by being at home more and by feeling the cold after treatment, as well as paying for extra support, such as cleaning. Many people also find their income drops, as they cut down their working hours or stop work altogether because they feel too ill to continue.

When you are diagnosed with

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A cancer diagnosis is difficult enough, but for many people it also leads to severe financial hardship

More than a third of people diagnosed with cancer had not considered that the disease
would affect them financially. Picture: Getty

Macmillan Cancer Support estimates that cancer costs an average of £570 a month for more than eight in ten patients, with working parents of young children hit hardest of all.

The costs associated with the disease include travel to and from hospital appointments for consultations and treatment, a rise in household bills caused by being at home more and by feeling the cold after treatment, as well as paying for extra support, such as cleaning. Many people also find their income drops, as they cut down their working hours or stop work altogether because they feel too ill to continue.

‘When you are diagnosed with cancer, the last thing you need to be worrying about is how to pay the bills and keep a roof over your head,’ says Macmillan chief executive Lynda Thomas.

Seeking support

This financial strain can be the straw that breaks the camel’s back, she adds: ‘We are talking about families whose world has already been turned upside down and now they are having to stop going out or spending money on treats for their children. And even then, they’re still at risk of getting into debt. It’s a worrying and isolating place to be.’

According to research conducted by the charity earlier this year, more than a third of people diagnosed with cancer had no idea the disease would affect them financially, while a further one in ten underestimated its impact on their financial situation.

Macmillan now offers a range of guidance, advice and grants. It urges patients to seek support as soon as possible, before debts begin spiralling out of control. The charity says it helped 90,000 people affected by cancer access £267 million in benefits last year, and more than 600 people a week received a one-off grant averaging £400 to put towards heating costs, extra clothing or a holiday.

Among those who have received support in the past is Mario Barlaba, who now works as a Macmillan cancer support and information officer at the University Hospitals of North Midlands NHS Trust in Staffordshire. He was diagnosed with non-Hodgkins lymphoma in the summer of 2006.

Help at Macmillan

‘At the time, I had been running my own restaurant for almost five years and it was doing well,’ says Mr Barlaba. ‘When I was diagnosed, I realised that I wouldn’t be able to work, so I approached my insurance company. But they said that because it was an illness, not an accident, they wouldn’t pay me anything. I remember being in a hospital corridor and I just broke down. Everything felt as if it was collapsing.’

Already going through the process of separating from his wife, Mr Barlaba was living in a flat above his restaurant. He soon realised that, as well as losing his business, he would lose his home. ‘I just couldn’t afford the outgoings anymore and I got an eviction notice,’ he says. He moved into a local authority flat the day he was evicted.

Supporting him through his illness and these challenges was Macmillan haematology clinical nurse specialist Pat Holland. ‘I’d told her about the news from the insurance company on the day it happened,’ says Mr Barlaba. ‘Two weeks later, she gave me two cheques from Macmillan, which helped me to buy a carpet and a cooker for the new flat. It was massive for me.’

Today, the two still keep in touch. ‘I can’t thank her enough for what she did for me. I don’t know how I’d have coped without her,’ Mr Barlaba says. ‘She was always there to support me when I needed her. My children were both very young, and my family lived in Italy and Bermuda, so the only person I could turn to was Pat. She was there to catch me when I fell down.’

Giving back

Credit cards linked to the business, alongside incapacity and housing benefits, enabled Mr Barlaba to live for the next few years. ‘I decided that if I got through everything, I would work to give something back,’ he says.

In 2009, he became a full-time volunteer with Macmillan, working at an information centre alongside his nurse, Ms Holland. In 2013, he was appointed to a paid post at New Cross Hospital, part of the Royal Wolverhampton Hospitals NHS Trust, before moving to his current permanent role last year.

‘I’ve taken a completely different career path,’ he says. ‘It’s interesting and I love it. I have passion for what I do. My mission is to make sure that no one goes through what I did.’

Mr Barlaba says few patients are prepared for the financial implications of their diagnosis. ‘It’s a shock for most people,’ he says. ‘All the hospital appointments cost a lot in travel and car parking fees. Another common side-effect of having cancer is feeling the cold much more. It’s not unusual for heating bills to double at least because you need to keep warm.’

Benefits help

But he adds there is a range of support and services available to patients now that didn’t exist when he was diagnosed 10 years ago. ‘At Macmillan there are experts who can sort everything out for you. For example, your benefit claim, which means you can push that worry to the back of your mind because that is looked after. When you have cancer, the last thing you need are more stresses in your life.’

For Ms Holland, supporting Mr Barlaba was all in a day’s work. ‘It’s about identifying when things are a problem and then acting,’ she says. ‘Anxieties cause more problems, so if we can reduce them that’s always better for the patient.’

In her clinical nurse specialist role at Burton Hospitals NHS Foundation Trust she sits in on consultations when patients are first told their diagnosis, and provides counselling afterwards. ‘Finances are a key issue and I broach the subject then,’ she says. ‘I reassure them that we don’t pry into their finances, but we are here to help and they should talk to me if they’re worried, because I can signpost them to expert support.’

Detailed plan

Patients’ needs are holistically assessed at their next appointment and this includes a more detailed look at coping financially in light of their treatment. Money matters can be a sensitive topic, but this can be an opportunity for patients to share their fears about the future.

‘People realise that they are going to need time off work and it may be for quite a while,’ says Ms Holland. ‘Obviously that affects being able to pay the bills and day-to-day living. If we spot any issues at this stage, we signpost them towards help straight away and we continue to assess them throughout their treatment too.

‘I’m very proud to be a Macmillan nurse because I’m in a position where I can help patients.’

Key statistics
  • Macmillan says in 2015 there were an estimated 2.5 million people living with cancer in the UK; this is predicted to rise to 4 million by 2030.
  • The number of people living with cancer has risen by almost half a million in the past 5 years.
  • Although more people are now surviving cancer, around one in four faces poor health or disability after treatment.
  • Four out of five people are, on average, £570 worse off every month as a result of a cancer diagnosis.
  • Some patients remain unaware of the financial support they may be entitled to receive, including free prescriptions.
  • More than half of those living with cancer have higher day-to-day living costs, including heating and paying for extra help.
How to support patients
  • Ask questions. If you feel it is appropriate, ask how the person will cope at home and what their work situation is like. By identifying any issues early on, you can steer them in the right direction for support.
  • Be aware that money can be a sensitive subject for patients. They may not expect a healthcare professional to ask about money worries, so raise the subject sensitively. Give patients information leaflets they can read in their own time.
  • Look for signs a patient may be struggling, even if they haven’t shared their problems. For example, have they lost weight because they don’t have enough money for food? Have they said they are worried about paying the bills or feel they must go back to work because of finances? Have they missed appointments? It could be a sign they can’t afford transport.
  • Remember that situations change, and while patients may not be affected financially at the beginning of their treatment, it could become a problem later. Keep talking so you can offer support throughout treatment and beyond.
  • Signpost patients to expert help. This includes Macmillan’s welfare rights and benefits advisers, energy advisers and specialist financial guides. They can help patients navigate the benefits system, manage debt and borrowing, and cope with increased energy bills.
  • Check if there is a local Macmillan information and support centre near you. Their expert advisers provide face-to-face financial information and support.

For more information, call the Macmillan support line on 0808 808 00 00 or visit macmillan.org.uk/moneyworries


Lynne Pearce is a freelance health writer

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