'Give it a go': Former patients share their experiences of cancer screening

A diverse network of volunteer representatives who have undergone screening offers the HSE valuable insights into the patient journey and advice on improving its communications

Mary Kennedy, who received treatment for early-stage bowel cancer following her diagnosis through the HSE’s bowel screening programme, is a patient representative. Picture: Moya Nolan.

Most people have some awareness of the programmes operated by the HSE’s National Screening Service (NSS) — BreastCheck, CervicalCheck, Diabetic RetinaScreen and BowelScreen — but what is less known is the Patient and Public Partnership (PPP), a panel of citizens who voluntarily give their time and expertise to ensure that the needs of people who are being screened are met and that the experience is patient-led — which was not the case several years ago.

Recommendations made in Dr Gabriel Scally’s 2018 scoping inquiry into CervicalCheck resulted in the establishment of the PPP, which emulated best-practice international models, such as those found in Canada and NHS England.

Following a recruitment drive last year to boost numbers and diversity, the PPP acquired 14 new representatives, bringing the total to 39, six of whom represent “an area of diversity”, says Fiona Ness, general manager of communications, engagement and information development at the NSS, adding that these reps are involved in almost 75 projects.

No qualifications are necessary to become a PPP rep, as the NSS considers those who sign up — and recruitment is ongoing — to be ‘expert by experience’.

PPP reps can cherry-pick what interests them across the four screening programmes, with some choosing to get involved with a particular programme if they have had first-hand experience — be that positive or negative — of that programme.

“When we go to PPP, we don’t say, ‘You have to do this’, or ‘we want you here’,” explains Ness. 

“We put out an expression of interest on the projects, the committees, the meetings, or the work that we’re doing, and ask people if they would like to join. 

"We give them a good descriptive sense of it. We’ll talk them through it, and then we’ll link people in to the projects they would like to work on.”

Best outcome

Mary Kennedy, 63, became a PPP rep at the end of last year, to encourage others to participate in screening, following her positive interaction with BowelScreen.

Kennedy, a retired garda, was 61 when the BowelScreen letter arrived. She was active and “had absolutely no symptoms” that might suggest anything was amiss. 

Having been sent the home test kit, Kennedy completed it as instructed, sent it off and, a couple of weeks later, “I got a letter from them to say that they had seen blood in my sample.”

BowelScreen invites men and women, aged 60 to 69, to participate in screening every two years, via a faecal immunochemical test (FIT) that can detect blood in the stool. If blood is detected, it does not necessarily mean cancer, but further investigation, in the form of a colonoscopy, is recommended.

Mary Kennedy on BowelScreen programme: “I can’t speak highly enough about it, and I can’t encourage people enough to do it."

According to the Irish Cancer Society, bowel cancer — also known as colorectal cancer or cancer of the colon or rectum — is common in Ireland, especially among the over-50s, with 2,500 people diagnosed yearly. Screening, which is for those who have no symptoms, can spot early signs of the disease.

Kennedy subsequently attended Connolly Hospital for a colonoscopy — an examination of the bowel using a small camera — and cancer was discovered.

She had a bowel resection a few weeks later, in Beaumont, and three weeks after that was informed by her consultant that “my cancer was caught very early. It hadn’t spread, and I didn’t require any more treatment. It was the best outcome anybody could have.”

She is now “under surveillance” until five years post-treatment, which involves regular bloods and yearly colonoscopies.

Having found her experience of BowelScreen wholly positive — “I can’t speak highly enough about it, and I can’t encourage people enough to do it” — Kennedy agreed to feature in a Bowel Cancer Awareness Month campaign video, and subsequently joined the PPP.

Hearing the experience of peers is one of the biggest motivators in encouraging engagement, Ness explains, pointing to spikes in interaction with BowelScreen’s website whenever Kennedy’s video is shown online. “It’s driving people to go and find out more about screening,” she says.

‘I wanted to give something back’

Keith Cairns was 69 when he sent off his BowelScreen FIT test, and an abnormal result meant he needed a colonoscopy, which, he says, came as a “huge shock”.

He was nervous about undergoing the procedure — “I’m the biggest chicken ever known” — but a phonecall from the BowelScreen nurse provided reassurance.

“She made me feel so at ease.”

He underwent the procedure at St James’s Hospital, and polyps were found, which, when biopsied, were deemed non-cancerous. About a week after his colonoscopy, Cairns got a letter to say “everything was OK”.

He found that his experience, from “start to finish”, had been “super” and, having sent an email relaying the positive nature of his interactions with BowelScreen, was asked if he’d be interested in becoming a PPP rep. He was, and has been playing an active role since.

“I wanted to give something back,” he says.

He notes, as does Kennedy, that the advent of online meetings during the pandemic makes attending these “very easy”.

Cairns and Kennedy have found that their opinions and feedback as PPP reps are valued at meetings. 

“The screening people really listened to everything that everybody said,” Cairns says.

“I think the fact that we’re being included in [everything] is what makes it count. In other words, they’re giving us the opportunity to say, ‘Excuse me. Maybe that’s not the way we would say it. Maybe we do it this way.’”

Kennedy has had a similar experience: “Your input is valued.”

She is justifiably proud of the difference she’s making.

Unless you’re in the system, you can’t do anything about it. It’s better to be involved, so that you can give some sort of input. I think it has to make a difference.

For his part, Cairns, now aged 76, says he has helped to take “the jargon out of the posters or out the flyers” offering wording in “plain-man’s language”.

PPP reps can be hard taskmasters, which is welcomed. Ness recalls one PPP rep who, while insisting “this has to be absolutely right”, also pushed for faster delivery of the project in hand, urging, ‘It’s taking too long. Move it on’. She is keen to stress that such accountability was “really appreciated”.

PPP engagement is in the process of becoming embedded across all aspects of the NSS. “It’s consultation and co-design and partnership,” Ness says. 

“More and more, we’re moving towards a partnership model.”

Reps are offered the same training and skills as staff and get to share their input in end-of-year and programme reports.

“They have a direct line to the chief executive,” she says.

A marker of the network’s success, Ness says, is that NSS is “hitting high marks with people’s experience of the [screening] services now”.

“Give it a go,” is Kennedy’s advice to anyone considering getting involved in the PPP. “And if you find it’s not for you, that’s OK, too.”

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.

This special edition on bowel cancer is part of a series of projects marking Feelgood’s 25th anniversary.