‘Travellers are dying of same diseases as all of us’

April is Bowel Cancer Awareness Month and while the focus is on how we can all watch out for the signs, for communities that are socioeconomically disadvantaged, targeted campaigns are needed to teach people the symptoms of a disease that accounts for 11% of cancer deaths in Ireland.

According to the HSE, 2,500 people in Ireland are diagnosed with colorectal cancer every year, making it the second most common invasive cancer in men and the third most common in women. While the survival rate has improved, the mortality rates for colorectal cancer in Ireland are still below the European average.

Health inequality is also at play here. “Given the well-established link between socioeconomic factors and health, it is not surprising that deprivation can affect the risk of developing cancer, the stage at which it is diagnosed, and overall outcomes,” says a HSE spokesperson.

A National Cancer Registry of Ireland (NCRI) 2023 report found that between 2014 and 2018, men and women in the most deprived areas had a higher rate of cancer (7% higher for men and 5% higher for women) compared to those in more affluent areas. For colorectal cancer, men in the most deprived areas had an 8% higher rate of colorectal cancer than those in the least deprived areas.

Lynsey Kavanagh, co-director of the Pavee Point Traveller and Roma Centre, says that social determinants profoundly impact health outcomes. “Travellers are dying of the same causes as the general population, not of some rare or exotic diseases. We are talking about cancer, CVD and respiratory issues, but in far greater numbers.

“Travellers are not getting access to timely or quality care and, as a result, are dying at disproportionate numbers.”

Money talks when accessing healthcare in Ireland.

Just last month, professor Gráinne O’Kane, a leading oncologist, warned that patients on low incomes were missing out on vital cancer care, because more life-saving drugs are only available to those who can afford to pay.

Speaking at the Irish Pharmaceutical Healthcare Association (IPHA) conference, O’Kane said: “We’re in this position now, where I’m sitting and asking that question — and I hate it — ‘Do you have private health insurance?’ What do I do? Do I tell the patient who doesn’t have private health insurance, who is low income, who has five kids at home, that there is a drug you could potentially access, but it costs this amount?

“We just have to think about what we want to do here, and what identity we want to have in Ireland, given our position in Europe.”

Trust is crucial

Caroline Murray also wears another hat. She co-ordinates the Community Champions Programme, a pilot run by the HSE National Screening Service, launched in Galway and Roscommon in 2024.

“The role of the community champion is to provide practical information about screening in the community,” she says.

Encouraging engagement with BowelScreen is central to the Community Champions’ work. “We went through the process of registering for BowelScreen, what the kit looks like, and how you use it. We also talked about how the community health workers would bring up this topic in their outreach programmes with the Traveller community. One project made a short video on BowelScreen that they sent via WhatsApp to inform their community.

“We also co-designed an A5 leaflet through funding from the Adult Literacy for Life collaboration and innovation fund that the community health workers could use to explain about bowel cancer in their outreach programme.”

Murray says that while Traveller men engage with male-specific issues, it’s often the women who engage with all the programmes. “The men left for the breast [programme], but the women were laughing, because they were saying,‘We stayed for the prostate’.”

Building trust is essential to her outreach work, particularly when discussing sensitive health issues.

“The bowel can be a bit [challenging], because you are dealing with their poo and it can be a bit funny chatting with people about that.”

Awareness programmes about signs and symptoms, particularly screening, are very practical. “Literacy can be a barrier — they get so many letters and medical letters, and it can become overwhelming sometimes,” says Murray.

If you ask someone on the street about the process for bowel screening, she says, many wouldn’t know, not least the fact that you have to register to receive the testing kit.

“Once registered, you then repeat the cycle every two years. Bowel screening currently covers those aged 59 to 69, arguably too advanced an age group for a population with a low life expectancy, such as Travellers,” she says.

Lack of investment

According to Lynsey Kavanagh, the right policies are often in place, but are not always implemented. “For example, the National Traveller Health Action Plan was launched in 2022, with great commitment and hopes from Travellers and Traveller organisations around the country that it would deliver essential outcomes in Traveller health. It was also the first time since 2008 that Traveller health had received additional core funding of €1.3m to implement the plan.

“Unfortunately, the plan has not received any new core funding since its launch in 2022 and that lack of real investment in Traveller health is a key challenge in addressing health equity.

“We look forward to working with the new minister [for health] to address this gap.”

However, the Government has stepped up its efforts in related areas.

A recent HSE initiative is establishing a network of regional cancer-prevention officers, with five currently appointed. These are senior health promotion and improvement officers with a special remit in cancer prevention and early detection. They carry out targeted work in their local area, through other health and wellbeing staff, healthcare professionals, community groups and others.

Also, the National Cancer Control Programme (NCCP), in partnership with Pavee Point, has commissioned UCD to undertake national research on Travellers and cancer awareness, and that report is due to be finalised shortly.

“There’s a need to create the conditions in which Travellers not only feel comfortable, but confident in a service to engage effectively with it,” says Kavanagh, adding that a community development approach works best.

“A key concern is also digital health and the need for digital health solutions not to further marginalise Travellers or other marginalised groups from the health system.”

Yet there are signs of growing awareness.

The annual National Traveller and Roma Men’s Health Day, typically held in June in association with Men’s Health Week, has seen a significant increase in Traveller men attending and engaging each year.

“That indicates that there’s not only a keen interest in health, but that when you create the conditions, people will engage,” says Kavanagh.

Whatever about divine intervention — and specifically those blessing themselves whenever they hear the word ‘cancer’ — earthly intervention will work, too.

Additional information contributed by Dr Fiona McGuire, specialist registrar in public health medicine, NCCP, and Dr Triona McCarthy, consultant in public health medicine, NCCP.

Spot the symptoms 

• Changes in bowel habits — diarrhoea, runny bowel movements, constipation, needing to poo more or less often than usual.
• Blood in your poo, which may look red or black.
• Abdominal issues — cramps, general abdominal pain, bloating that doesn’t go away.
• Weight loss when you’re not trying to lose weight.
• Tiredness and lack of energy when you’ve had enough rest.
• Any unusual change you know isn’t right for you.
• If you experience one or more of these symptoms, you should make an appointment to see your GP.

• For information on bowel cancer screening and using home test kits, click here.