Patient advocacy by the women and families affected by the CervicalCheck controversy has improved healthcare in the State, a new study has found, but these women say they still have a lack of trust in the health system.
The 221+ group is a patient group that was established after it emerged scores of women with cervical cancer were not told that smear test results showing them to be in the clear were inaccurate and the revised test results were kept from them for years.
The controversy emerged after Vicky Phelan settled a High Court case against a US laboratory that was subcontracted by CervicalCheck, the national cervical screening programme, to assess the tests.
On Tuesday, the group published new research from the University of Limerick that found the group and patient advocates have “contributed significantly to an improved healthcare system in Ireland”.
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According to the research, “the work of patient representatives to improve the quality of information from, and interaction with, the health service provides improved outcomes for patients generally”.
Dr Elaine Kinsella, associate professor in the department of psychology in UL, and project lead, said the findings indicate how peer support can “buffer negative emotional experiences”.
Women don’t feel they’re being listened to by their doctor. There is a collective healing in the patient group, with the understanding and shared understanding
— Lyn Fenton - 221+ member
“It reinforces findings elsewhere that in-group support can diminish stress experiences and enhance wellbeing allowing those impacted to interpret a significant life challenge as more manageable.”
However, Lyn Fenton, a 221+ member, said there remain issues around trust in healthcare and trauma among those implicated in the controversy.
“Women don’t feel they’re being listened to by their doctor. There is a collective healing in the patient group, with the understanding and shared understanding. But you shouldn’t have to have a group in order to heal; women shouldn’t be as traumatised in the first place,” she said.
“When you’re traumatised it creates this bubble inside you and you don’t know what to do. You don’t trust anyone. They told you everything was okay, you trusted in the system, and it turns out it wasn’t. So if you don’t trust in a professional, then who can you trust?”
Ceara Martyn, manager of the 221+ patient support group, said a voice for patients “should be included in all elements of health policy and service development”.
“The Government has already committed to this and has set out a framework by which patient representatives [are] recognised and value for their contribution,” she said.
“This consultation process needs to be brought to a close with a decision that either reimburse expenses and/or compensate patient representatives so that we can start to recognise the value they add and encourage greater participation.”
It is important to remember that the serious failures in the organisation, planning and operation of CervicalCheck have taken time and effort to correct
— Dr Gabriel Scally
Ms Martyn said the lack of trust in the health system can have “ongoing impacts” on patient health.
“If you don’t trust them after you went to them the first time, it’s much harder to go back to them the second time.”
Dr Gabriel Scally, a Northern Irish public health physician who conducted a report on the controversy, said the report provides a “very good basis for 221+ to make a continued and valuable contribution into the future”.
“It is important to remember that the serious failures in the organisation, planning and operation of CervicalCheck have taken time and effort to correct. The few remaining changes that have not been implemented still require an organisation like 221+ to act with independence and insight in ensuring that Ireland’s cervical screening programme is the best that it possibly can be.”
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