At their meeting on Tuesday 17, December, 2019 with the Oireachtas Committee for Health, Lorraine Walsh and Stephen Teap, patient representatives of the 221+ Patient support Group reiterated the importance of continued oversight on the implementation of the recommendations of the Review of Cervical Check undertaken last year by Dr. Gabriel Scally.
Summary of Key Points
- Oversight of Scally report implementation must not be scaled down
- Individual Independent Review the final step to get the truth for RCOG women and families
- Healthcare professionals and patients must now rebuild mutual trust for shared benefit
- Cervical cancer survivors need lifetime care to deal with ongoing after-effects.
- Advocates believe that continued focus on vaccination and improved screening means eradication of cervical cancer in sight
Scally review
Noting that Dr. Scally reported on “huge deficiencies in oversight, procurement, quality assurance and auditing of the system” Lorraine Walsh said “the real success of his report and recommendations can only be appreciated when it is fully implemented” adding that this is paramount for the future success of screening in Ireland.
Mr Teap noted that although the CervicalCheck Steering Committee has continued to meet up to last week, there is now no schedule for that continued oversight into 2020 and he has “concerns about its fulfilment and it reaching 100% completion”. He called for confirmation of the continuation of this important work from the Minister for Health and a commitment from all parties that it would be continued beyond the lifetime of this government. “the oversight needs to continue, and we must also ensure there is a plan in place to review the ongoing actions that have been implemented, whilst following up to ensure they are still being worked on into the future”.
Rebuilding trust between patients and healthcare professionals
Both Mr Teap and Ms Walsh highlighted also the need for collaboration and a rebuilding of trust between healthcare professionals and patients. Recounting her recent personal experience, Ms Walsh noted that “We must recognise and acknowledge that Clinicians feel unsupported, isolated and undervalued. All involved have felt the strain but in different ways. As patients, we must value the concerns of clinicians on whom we rely”.
Mr Teap said “we cannot underestimate the importance of Patient Representatives and Medical Professionals working together with one voice to give a view from the ground up. We must talk, together, about the “Culture” in our Healthcare System that needs to be changed. Ms Walsh added that “we need to heal any divisions and come together for mutual benefit.
Individual independent reviews, post RCOG
Ms. Walsh also outlined her personal experience of the recent RCOG review. While acknowledging the work of RCOG in identifying “an array of missed opportunities” and of the HSE on the communication and disclosure of information, she noted that her own experience was neither “positive” or “reassuring”
“While I am not questioning the clinical assessment of each case, the accuracy of the administration of those reports and how they processed the information has not been accurate in some cases from our experience”
Mr Teap added “for those impacted, it is so very important to find out the truth individually. That is why we’ve been asking for the support of the Government for those who wish to have their own individual independent reviews so that they can get to the truth of what went on. This is what this is all about. To us the truth matters. If it cannot help us achieve this, that failure to support the women and families in determining the truth will be the Governments biggest failure in this debacle.
Supporting survivors
Again calling in her personal experiences and the shared testimony of others, Ms Walsh gave the Committee members a very detailed picture of the challenges faced by those who survive cervical cancer but who are left to live with its effects for life. “These women, and their families, desperately need post treatment care and support. Cervical cancer leaves horrible after-effects. There is a need to focus on provisions of:
- Psycho Oncology service
- Onco Social Worker
- Onco Fertility run in the public system
- Psychosexual support
- Dieticians to help with gastroenterology and post radiation bowel toxicity
- Pre-Clinical Lymphedema Assessment
- Physiotherapy for Pelvic Floor and lymphedema
There is a need for legislation that will enable surrogacy as an option for women in Ireland who, as a result of cancer, are left with this as their only option to have a child.
Eradicating Cervical cancer
Mr Teap emphasised the importance of sustaining public confidence in screening. “Screening saves lives and even Cervical Check Screening, a programme “doomed to fail” as described by Dr Gabriel Scally, has saved lives. We need to look after the women of Ireland today by fully implementing Dr Scally’s recommendations to ensure a Cervical Screening programme we can all trust and rely on”.
Ms Walsh added “In parallel we need to encourage the uptake of HPV vaccinations for girls and boys in order to reduce incidences of cervical cancer, but this takes time and faith on behalf of parents to vaccinate their children”.
Mt Teap concluded, “the eradication of cervical cancer is within reach I very strongly believe we can achieve this, I very strongly believe that we can prevent what happened to my wife and family happening other families in the future”.