By Susan Donlon, Communications Team, National Screening Service
The National Screening Service (NSS) met recently with Patient Advocacy Group 221+ and other key stakeholders to review the implementation of recommendations from a collaborative consultation and research report.
The report was an outcome of a jointly-developed consultation in partnership with patient representatives from 221+ who were affected by the CervicalCheck audit. The consultation captured the personal views and experiences of women and their recommendations for improvements and change in future processes of cervical cancer audit and disclosure.
The meeting was facilitated by independent facilitator Nadine Ferris France.
Consultation
Opening the meeting Nadine provided an overview of the consultation process: building trust with specific guiding principles; designing and agreeing the process; and moving to the outcome of interpreting and agreeing recommendations. Nadine emphasised the importance of spending time at the early stage to build trust as it helps move through the latter stages - “You have to go slow to go fast”. The process, Nadine said, captured the “humanity, dignity and willingness of people to make things better”.
221+ Manager Ceara Martyn welcomed everyone to review the “very positive outcomes from the report.” The 2-year process, Ceara said, “has informed us all how to engage meaningfully” in what was sometimes “a difficult process”. Ceara thanked the NSS for the commitment to that “meaningful engagement from the beginning” and said the personal cervical screening review process is “a world first we should all be proud of”.
Estelle McLaughlin, Public Health Strategy and Development Manager with the NSS, reaffirmed that commitment saying “we wanted the process to be led by the women [of 221+]” and though challenging at times, we can now “celebrate our progress and share the outcome and learnings”.
Commenting on the opening remarks, one 221+ member said “we felt all the way through, and were convinced all the way through, that we were not just ticking a box. It was meaningful, the trust we built. We believed in what we were doing and you gave us an opportunity to use something so difficult for something good.”
Research
Anne Vestergaard, Quality Matters, provided an overview of the research, and the findings and recommendations for screening, audit, disclosure and post-disclosure. The main findings identified a clear need for future improvement in each step of the patient journey and resulted in detailed recommendations to improve the information and supports provided to people going through a review process.
The positive outcome, Anne explained, are the core principles identified as considerations to be applied throughout the personal cervical screening review process with the aim of improving the patient experience: empowerment and respect through transparency and choice; empathy, personal contact and care; and structure, organisation and clarity.
Reflecting on this outcome, Ceara said the personal cervical screening review process for women that has come from the report is “groundbreaking”.
Progress
Chief Executive of the NSS, Fiona Murphy, spoke about the journey to personal cervical screening reviews arising from the Interval Cancer project and a recommendation in the Expert Reference Group reports to “establish patient-requested review and disclosure processes”. Commissioning the work with 221+, putting women and their lived experiences at the centre and ensuring a supportive process of independent facilitation was an important part of our learning, Fiona said, and thanked the women for being “hugely courageous” throughout the process.
Fiona said the NSS has strengthened processes and governance structures that the report recommendations spoke to. Improvements have been implemented in many areas including communications, quality assurance and risk management, information governance, and in promoting transparency and inclusiveness – bringing our Patient and Public Partnership representatives into our decision-making processes.
Quality and comprehensive education and training with a wide community of medical and nursing professionals on the limitations of screening is driven by a new CervicalCheck Education Strategy and new standards and requirements in cervical screening education programmes. This is a vital part in the development of workforce competencies in communication about cervical screening, recommended in the recently-published World Health Organization report on best practices in cervical screening programmes.
The NSS has embedded a culture of engagement and partnership. “We have enhanced how and where we communicate and engage with all stakeholders, across all four screening programmes,” Fiona said. “We’ve improved how people can provide feedback through the Your Service Your Say facility and our real-time patient experience online surveys currently rolled out in two screening programmes. Screening isn’t just us [the NSS]. It’s all of us”, and all of this work is underpinned by the NSS 5-year strategy, Choose Screening - Together we can make a difference.
Clinical Director of CervicalCheck, Prof Noírín Russell talked about the development and implementation of personal cervical screening reviews saying this process is “no longer theoretical – these are happening”. Women are being provided with the support, information and reassurance they need to tell their own story and to make informed decisions about what reviews could potentially mean for them personally.
Programme Lead for the HSE National Open Disclosure Programme, Angela Tysall provided an overview of developments in open disclosure across the HSE aligned with recommendations from the 221+ consultation and research report. The ethos of the National Open Disclosure Policy and Programme is reinforced by the HSE values of care, compassion, trust and learning. It ensures the rights of all patients to be communicated with in an open, honest and empathic manner, and that they are met with dignity and respect throughout the process. “The patient experience is the single biggest driver for open disclosure” Angela said.
Commenting on the progress presented, one 221+ member thanked the NSS for taking “so much of what we said on board”, and another said “it feels great personally to be heard”.
The future
There was consensus among all in attendance that there is an opportunity to work together towards another common goal – Cervical Cancer Elimination. During her presentation, Prof Russell said she was excited about the future. “To think that we can eliminate cervical cancer is such an exciting prospect. I believe we can get there.” The NSS along with its partners is preparing to announce Ireland’s target date for elimination in November 2023.
Closing the meeting, Ceara thanked everyone for coming. “We all had the same goal,” Ceara said, over 2 years of sharing and working together. “Today we are moving forward together with the patient voice at the centre”.