Tuesday 12 December 2017

'Cancer has put such pressure on me financially... I couldn't afford the €20 train fare to Dublin for treatment' - The cost of mounting medical bills

Coming to terms with a cancer diganosis can be a rollercoaster - for the patient and their family. Add the mounting medical bills and the stresses of everyday life, the disease itself becomes just one part of the cancer journey

Patricia Dempsey's cancer expenses have impacted on her entire life. Photo: Dylan Vaughan
Patricia Dempsey's cancer expenses have impacted on her entire life. Photo: Dylan Vaughan
Billy and Una Black have found it hard to make ends meet since Billy's cancer diagnosis

Ailin Quinlan

Patricia Dempsey had a well-paid job as an office administrator before she was diagnosed with cancer - now she's unemployed and so financially strapped she recently couldn't afford the €20 train fare to hospital for a check-up.

Billy Black had his own thriving business, while wife Úna worked as a FÁS administrator, but the couple's comfortable lives fell apart in 2004 when Billy was diagnosed with the disease.

Úna gave up her job to care for him and, unable to continue working, Billy had to sell his business. Now the Blacks have to watch every penny.

When a loved one is diagnosed with cancer, their survival is the first priority, but the Irish Cancer Society warns, the disease can often cause serious financial difficulties for patients and their families too.

If a person is self-employed, young, without private health insurance, ineligible for a medical card or doesn't have savings, they're left in a very vulnerable position - often, says the ICS, which is currently carrying out a national survey into the cost of cancer for patients and their families - unable to manage even basic expenses such as travel to hospital for treatment.

"Cancer patients calling the Irish Cancer Society's Cancer Nurseline, visiting Daffodil Centres and availing of the Society's patient travel and financial support services, have highlighted how they are trying to cope with the increased costs associated with their cancer diagnosis while also suffering a drop in income," says the organisation.

Last year, the organisation donated more than €1.5 million to cancer patients and their families through its Financial Support Scheme towards essentials, such as fuel to heat a patient's house, childcare or travel costs.

When Carlow woman Patricia Dempsey was diagnosed with ovarian cancer in 2011, she had no inkling of the devastating financial implications.

"I was so ill in the run-up to the diagnosis that I'd given up my job as an office administrator in August 2011," she recalls.

The 48-year-old had chemotherapy between November 2011 and April of 2012, followed by a hysterectomy that September.

In November 2013 she started a FÁS course to get back to work.

But in February 2014, during a routine check-up, the dentist discovered something suspicious on her tongue, and on April 1 Patricia had surgery to remove a tumour.

Money is now a significant issue for her - and even though she's still not out of the woods physically, Patricia has been told to sign on for Jobseeker's Allowance.

"I had illness benefit of €198 a week plus €28 rent allowance for two years.

"Then I was told to go on the Jobseeker's Allowance - €188 a week plus €28 a week rent allowance."

A single woman renting a shared house, she finds it difficult to manage on her welfare payments - despite this she has held on to her car because she feels it will help her get back to work..

"I find it very hard to manage," she admits.

"I still have to attend St James's Hospital in Dublin every month for monitoring and I get the train up because petrol and car-park costs are so expensive.

"The train costs €20 but recently I had to cancel my appointment because I had to renew my car insurance, and along with all the other bills I couldn't afford the train fare to Dublin.

"Cancer has put so much pressure on me. Initially my immediate priority was to survive, but the financial implications have been devastating."

She applied to the Irish Cancer society for financial support and received a grant for €300.

"I was very glad of it," she said, adding that until her cancer diagnosis her life was comfortable and financially stable - but now she's struggling to survive on less than half of what she had been earning.

Patricia is currently on a JobBridge Scheme, training as a medical secretary and hopes to look for work in September

"It has been very difficult. I feel I've hit a brick wall. I've worked all my life and I was forced to go on social welfare - it was not a choice," she says, adding that she believes cancer patients should be treated both as a separate welfare category and on a case-by-case basis.

"If you're a cancer patient you should be treated differently, because cancer has such an enormous impact on every part of your life.

"You're trying to fight this thing while you have the pressure of not having enough to pay your ESB bill."

The Black family would be familiar with the financial stress caused by cancer.

Until Billy Black was diagnosed with stage three colon cancer in 2004, he and his wife Úna had a comfortable lifestyle. At the time, Úna, now 69, was a senior development officer with FÁS, while Billy ran a thriving vehicle repair service. Billy, from Letterkenny, Co Donegal, had an operation to remove the tumour in April 2004.

He began a course of chemotherapy at the end of June which lasted until the following Christmas, followed by regular check-ups. However complications saw Billy admitted to hospital on up to 15 occasions between 2004 and 2013.

The financial consequences of his ill-health were significant.

Because Billy was self-employed in a one-man business, he had to close down - and, again because he was self-employed, he was not eligible for State support.

"There was no sick pay, and, while I was earning, he wasn't entitled to any social welfare," recalls his wife, who points out that Billy paid all his tax and PRSI all through his life.

Úna took early retirement in 2006 at the age of 59, because she says, at that stage "there was questions over Billy's survival."

As a result, she wasn't entitled to a full pension - and she's not entitled to a State pension because she's a former civil servant.

"The shock of the cancer was bad enough. We had some savings but Billy's business was closed, plus it took a while to sell it." Once he became ill, she recalls, lifestyle costs multiplied: "There was car-parking at the hospital, several times a day at ¤3 a go.

The grocery and heating bills climbed.

"Billy was extremely ill with chemo and only able to eat certain things, so the grocery bill became more expensive. The central heating was on constantly on because the chemo left him very cold.

"There were VHI payments, €2,600 a year. There was his medication. The first bill was €360," she recalls.

After that the couple availed of the cut-off of €84 a month until they finally got a medical card in 2008.

"He never worked after the colonoscopy - he was 59 at that stage - and for six-and-a-half years he got nothing until his old age pension, and then, because he hadn't been contributing for some years, he didn't get the full contributory pension.

"I was on my pension, but it was only three-quarters of a normal pension."

The cancer has made a big difference to their lives, Una says. "We now have to think carefully about everything we do. We know there are a lot people worse off than us," she says, adding however, that the fact that Billy was self-employed really worked against them.

"We discovered that if you're self-employed and fall ill, there's no safety net."

Life has been very stressful since 2004, she says.

"There should be support for people who are self-employed. You should have the same rights as anyone else. If I'd not been working I don't know how we would have managed. We were always prudent and careful and that was what saved us."

The fact that she was good at administration also helped make things easier, she believes.

Many extremely ill people struggle to cope without the reassurance of either job security or sick pay, says Liz Barragry, a senior medical social worker in oncology at the Mater University Hospital:

"A huge number of patients who present to our service for support at diagnosis, come with concerns around the financial impact of their diagnosis.

"People can be very quickly without an income and they may have to negotiate social welfare payments at a time when they're dealing with stress," she says.

"I've had women with me who've either closed a business or made the decision about closing their business and their fears for the future can be profound," she says that the issue is one which deserves urgent attention at government level.

"Sometimes there's a misconception that there's a lot more support out there than there actually is - or that existing supports are sufficient," she warns.

On top of that, she says, the reality of "linking in with available services can involve lengthy delays - or services may simply not meet the needs of particular patients.

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