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Published: 07 March 2024

Inclusive care reviews offer an open and human process for women diagnosed with cervical cancer

Brigid Doherty, Public Representative

Public representative Brigid Doherty talks about her journey from general nursing to advocacy work, and creating a personal review process for women who develop cervical cancer after screening

By Fiona Ness, National Screening Service (NSS) communications

“I’m practical. Pragmatic. Considered. And always with a good sense of humour, I hope…” public representative Brigid Doherty is describing how she sees herself. Those in government, health and law who have worked with Brigid during her 15 years in advocacy would likely agree.

Attentive, probing, listening, giving her views. An expert by experience. This is Brigid’s - unpaid – vocation since her retirement.

Brigid began her working life as a general nurse in Dublin before moving to England to work first as a Community Nurse, then as a Clinical Nurse Specialist in palliative care and then as a hospice manager. Not long after retiring back to Ireland, her daughter nudged her into volunteering for the patient advocacy service, Patient Focus. Brigid fired off her CV and was accepted in a voluntary capacity and shortly afterwards as a staff member.

“I learned a lot about the Irish health service through that work,” Brigid says. “I was involved in maternity cases in Portlaoise, the Neary redress scheme and many individual cases where the outcome of care was not what the person had expected. The role included highlighting issues of concern and providing direct advocacy to patients and their families.”

As a public representative, she says, “You can speak your mind. I’d find that very difficult if I couldn’t.”

Brigid was asked to join a series of Department of Health committees and external national healthcare reviews. Today she sits on the National Patient Safety Council and the Board of the National Office of Clinical Audit.

In 2018 she was visiting her son abroad when she received a call asking her to become a member of the Department of Health’s CervicalCheck Steering Committee.

This triggered a cascade of CervicalCheck-related advocacy work for Brigid, where she worked in multiple groups to examine issues, make recommendations and implement them. This work came full circle when she joined a group tasked with designing a process for providing personal cervical screening reviews to women who have a diagnosis of cancer after screening. “My heart went out to the women and their families,” she says. “The thing was to make it right for the women, going forward.

“Because I was involved at the beginning of the development of the review process I was able to influence decisions early on,” she says. “I felt free to express my opinion on what mattered to people, from what I knew from my advocacy experience.”

No matter your background, Brigid says that “when you are a patient having a review of healthcare, you are vulnerable; you do need someone supporting/guiding you through the process”.

Her work on the steering group required her to be up-to-date with technical processes, attend regular meetings to plan processes, read documentation, and help create information materials for the public. “It was important that concise language was used to communicate to the public, and that complex terms were made simple. The information often needed several changes until there was agreement.”

Personal cervical screening reviews are based on the premise that if a person develops cervical cancer after screening, when the time is right for them, they may want to know more about why that happened. “To provide the person with a review of their screening history in an open and transparent way requires a clear process that keeps the person at the very centre of it. This is a process for them,” Brigid says.

Brigid says the information on cervical screening reviews is “very clear”.

When reviews are offered in healthcare, Brigid says, the processes are not always user-friendly and can be difficult for people to understand or navigate. “I wanted to ensure that the cervical screening review process was not bureaucratic, that it was clearly described to people in simple language, that the process included communication resources to keep the person up-to-date with the progress being made. It was important that the timeline was clearly outlined”.

When she first heard that a review could take 12 to 18 months she says, she thought it was extreme. “But I can see now why a review could take this long. It takes time to get all the notes and to meet the woman and hear what she wants. This is why it is so important the patient has a trusted contact person in the NSS throughout the process,” she says.

“The connection the NSS Client Services department has with people who apply for a review is way beyond what I would have experienced in my time in patient advocacy. They build up a relationship; it makes the process human. They work hard to gain the trust of the person and that’s part of the process – restoration of trust with a health service you are wondering if it has failed you.”

“The reviews give people the facts. Then the health service takes the consequence of whatever the facts are. In other countries where they do [reviews of patient care], litigation against the health service tends to be reduced.

“During my advocacy work, having sat with patients through legal mediation processes, I can tell you that there’s nothing nice about a legal case. In the court mediation process people can be very angry that they never get to see or hear from the doctor. Never get to tell their story to them.

“There’s a softer side to having your questions answered through a care review that you can’t get through litigation. Reviews give people the opportunity to say they are angry or cross or to ask the same question over and over until they grasp the meaning of what they’re being told and at the end they can decide if they are satisfied.”

When you ask people what they want to get out of a review of their care, Brigid says they always say that “if there can be learning from a care review, then this is what people want.”

Brigid is proud of her work on personal cervical screening reviews. “It's really important to keep the national perspective when you are talking about screening. Screening is so important. It saves lives.”