North v South: ‘No person going through cancer should have to deal with invoices or debt collectors’

Ger Collins with her son Brian: “I spent a fortune on parking at Beaumont hospital going in and out for appointments and scans.”
Cancer patients north and south of the border share many common experiences. The shock of diagnosis, waiting for tests and results, and putting their lives on hold. What sets them apart, however, is the range of supports available to them during treatment. More than 33,000 people are diagnosed with cancer every year on the island of Ireland.

In 2019, I became one of them.

Last January, while living in Belfast, I was diagnosed with breast cancer and required surgery, chemotherapy, radiotherapy, and hormonal treatment.

There was nothing unusual or special about my treatment for oestrogen-positive breast cancer. It would have been similar, regardless of which side of the border I lived.

For cancer patients south of the border, the level of support is inconsistent

What set my experience apart, however, was the range of supports available under the National Health Service (NHS) that helped ease the burden of the cancer diagnosis and treatment. A 24-hour helpline during chemotherapy, at least one free wig, and free car parking are among a range of supports available to cancer patients in Northern Ireland.

For cancer patients south of the border, however, the level of support is inconsistent. Supports can vary depending on where you live or if you are a public or private patient. There is no standard or universal package of support for anyone who receives a cancer diagnosis in Ireland. And for many cancer patients, that can present additional battles at a vulnerable time.

Health systems

How cancer patients are treated and supported on either side of the border will be influenced, in part, by the availability of free universal healthcare under the NHS in Northern Ireland versus the tiered public/private system offered under the Health Service Executive (HSE) in Ireland.

While patients in the north do not pay for medication or treatment, their counterparts south of the border may face some costs depending on whether they have private health insurance, a medical card, or neither.

For HSE patients such as Léa Hearst, without insurance or a medical card, getting a cancer diagnosis can mean hospital charges of up to €800 a year for chemotherapy treatment, in addition to drug costs.

Married and living in Dublin, the French national was charged €160 a month over four months for inpatient charges for chemotherapy treatment last year and also had to pay €134 a month for drugs. “I was surprised to receive my first bill two weeks after the treatment commenced and horrified when threatening letters started to arrive from a debt collection agency a month later, I couldn’t understand it,” Hearst, who lost her job within months of the diagnosis, explained.

Léa Hearst: “When I told my family and close friends about my cancer diagnosis they told me to come home. If I had known how difficult it would be here I would’ve gone back to France.”
Léa Hearst: “When I told my family and close friends about my cancer diagnosis they told me to come home. If I had known how difficult it would be here I would’ve gone back to France.”

The 51-year-old, who is writing a short book about her cancer experience in Ireland, also faced additional costs during treatment such as paying for a wig, car parking, and higher heating bills. “I come from a country with universal healthcare. When I told my family and close friends about my cancer diagnosis they told me to come home. If I had known how difficult it would be here I would’ve gone back to France, ” she says.

“No person going through cancer should have to deal with invoices or debt collectors. Instead, patients should automatically be given a medical card once they get a cancer diagnosis. That would give patients back some dignity and ease financial pressures.”

The Irish Cancer Society calculated that the average cost to someone dealing with cancer is €756 a month

How many other cancer patients face similar pressures is unclear, as the HSE and individual hospital groups were unable to provide figures for the number of cancer patients charged in 2018.

Just a few weeks ago, the Irish Cancer Society calculated that the average cost to someone dealing with cancer is €756 a month.The society continues to lobby for an automatic medical card for all cancer patients and for an end to the use of debt collectors by the HSE.

Car parking

While patients in the north are offered free hospital car parking, south of the border cancer patients face a less certain policy on car parking charges, which can vary from hospital to hospital.

Ger Collins, an ambassador for Breast Cancer Ireland, was diagnosed in 2015 and recalls car parking as an issue then, with some hospitals offering free car parking and others not. “I spent a fortune on parking at Beaumont hospital going in and out for appointments and scans. On the day that I was diagnosed, I remember it was €13 for parking for the few hours I was there. I found that very frustrating. I mean I could manage that but for somebody else that could be their dinner,” Collins says.

Ger Collins with her son Brian: “I spent a fortune on parking at Beaumont hospital going in and out for appointments and scans.”
Ger Collins with her son Brian: “I spent a fortune on parking at Beaumont hospital going in and out for appointments and scans.”

In March, 2018, Minister for Health Simon Harris announced a review of hospital car parking charges but recommendations produced a year ago remain to be implemented. The HSE said “discussions are ongoing with the department in relation to the funding required in order to complete the implementation of the recommendations of the report”.

Out-of-hours

For many patients, chemotherapy is the toughest part of their treatment. It is an anxious time when patients have to deal with possible side effects and the risk of serious infection.

Patients undergoing chemotherapy in Northern Ireland, however, can access a 24-hour triaged helpline if patients are concerned about a rise or fall in temperature or worsening side-effects. The oncology and haematology helpline is staffed by specialist nurses and doctors and ensures patients with infection are fast-tracked to hospital.

Under the HSE, some cancer patients can avail of out-of-hours support, but it is not standardised or available to all cancer patients receiving chemotherapy.

Some HSE hospitals have oncology/ haematology teams on call to deal with patient concerns, but many patients with concerns out-of-hours may have to contact their inpatient ward or a hospital emergency department.

Hair loss

Under the NHS, chemotherapy patients are offered, free of charge, the option to choose one real hair wig a year or one synthetic hair wig every six months during the period of hair loss.

South of the border, there is no automatic entitlement to a wig or hair piece for chemotherapy patients. Medical card holders can avail of a wig allowance, but the level of financial support will vary depending on where they live.

The HSE says it is working on plans to standardise this allowance, which is only available to medical card holders, but could not say when: “Recommendations are being considered in relation to the standardisation of this allowance nationally.”

The Irish Cancer Society says universal access to bras, prosthesis and wigs would make a “huge difference financially” for women

Patients with private health insurance may be entitled to claim for some wig or hair piece costs under their policy; patients without insurance or a medical card may be entitled to claim tax back on wigs or hair pieces.

Meanwhile, breast cancer survivors are awaiting new guidelines for post-operative supports such as prosthesis and post-mastectomy bras, which were shelved in 2017. Two years on, the guidelines have yet to be published. The Irish Cancer Society says universal access to bras, prosthesis and wigs would make a “huge difference financially” for women.

Treatment summaries

Variations in support and care for cancer patients north and south of the border go beyond differences between the two healthcare systems.

Low-cost initiatives, such as providing patients with treatment summaries are available under the NHS but not the HSE.

Under the NHS, cancer patients receive summaries and information about their illness and the treatment they received, such as surgery, chemotherapy or radiotherapy. The initiative improves communication, empowers patients, and offers peace of mind.

This simple measure, however, is not yet available to patients treated by the HSE, despite a commitment under the current National Cancer Strategy that half of all cancer patients would be offered treatment summaries and care plans by 2018.

The HSE confirmed that treatment plans are being rolled out on a pilot basis next year for patients with colorectal cancer. A spokesperson said: “A pilot will commence in 2020 and will involve multidisciplinary teams in Beaumont, Limerick and Cork city with colorectal cancer services.”

Maresa first day of chemo.
Maresa's first day of chemo.

Supports available to breast cancer patients

1) Northern Ireland: The NHS offers free healthcare, prescriptions, and medications to all patients, including cancer patients.
Ireland: The HSE does not offer free healthcare or medications to all patients. Patients may have private health insurance, may qualify for a medical card on assessment, or may have neither and face inpatient charges of up to €800 a year for some treatments such as chemotherapy.

2) Northern Ireland: Free car parking for cancer patients attending chemotherapy and radiotherapy – daily or weekly passes provided.
Ireland: Patients continue to pay for hospital parking; some hospitals may offer free parking and some have reduced their rates for cancer patients. Issue reviewed in 2018 but no standard policy or guideline implemented yet.

3) Northern Ireland: 24-hour oncology helpline during chemotherapy. Patients are triaged by a nurse and doctor and fast-tracked to hospital if issues arise. Available up to six weeks after last chemo. This helpline is in addition to breast-care nurses who are assigned to each patient on diagnosis.
Ireland: Patients are assigned a breast care nurse on diagnosis, who can be contacted during daytime hours. Some cancer centres have oncology and haematology teams on call for out-of-hours. Otherwise, patients may be advised to contact an inpatient ward or hospital emergency department.

4) Northern Ireland: Free wigs are made available to all chemotherapy patients – patients can avail of one synthetic wig every six months while hair loss continues, or one human hair wig per year.
Ireland: Medical card patients may receive a free or subsidised wig, but allowances and grants for wigs and hairpieces vary across the country and have yet to be standardised. Private patients can claim some of the cost of purchasing a wig, depending on cover. Patients with neither may be able to apply for a tax rebate under the Med1 scheme.

5) Northern Ireland: A treatment summary and documentation is provided to the patient at various stages of treatment – eg surgery, chemotherapy and radiotherapy.
Ireland: Treatment summaries for patients have not yet been introduced despite a commitment in the current National Cancer Strategy. Treatment summaries will be piloted in 2020 for colorectal cancer patients at a number of hospitals.

Photographs of Maresa Fagan at her first and last chemotherapy session.
Maresa Fagan on the day of her last chemotherapy session. Maresa's fee for this article has been donated to cancer charities north and south of the border

Health services fail to meet urgent breast referral targets

Health services on both sides of the border are failing to meet targets to see urgent breast cancer referrals within a two-week period.

According to the latest figures available, the HSE is struggling to meet its 95 per cent target to assess all urgent breast cancer referrals within two weeks. In fact, between April and June this year, just 67.5 per cent of urgent breast cancer referrals to the HSE were seen within the recommended time frame.

The collapse of the Stormont executive in January 2017 has impacted on cancer services and waiting times

A spokesperson for the HSE said strike action by nursing staff earlier in the year impacted on services: “In the April to June period 2019, clinic wait times increased as the symptomatic breast clinics were impacted by the INMO strike earlier in the year. Data from September 2019 returns shows that 81 per cent of all attendances were seen within 10 working days and 91 per cent within 15 working days. This improvement is expected to continue.”

In Northern Ireland, the collapse of the Stormont executive in January 2017 has impacted on cancer services and waiting times.

Between April and June this year, 80 per cent of urgent breast cancer referrals were seen in two weeks, falling well short of the 100 per cent ministerial target. The target has not been met since March, 2018. A recent Westminster report by the Northern Ireland Affairs Committee also found that cancer services in Northern Ireland are trailing behind the rest of the UK.

Despite the absence of Stormont, breast cancer services are being reconfigured and a new 10-year cancer strategy is being developed but will require a health minister to implement changes.

A spokesperson for the Department of Health said: “The new Cancer Strategy 2020 will be available for ministerial consideration and public consultation in June 2020.”