14 November 2023
A year ago today we woke up to the news that Vicky Phelan, a mother, a wife, a daughter, a sister, a friend and a fighter had finally been overtaken by the scourge of cervical cancer.
Although she had always told us that a day would come when the body would give no more, for many of us with whom she had a shared history, it was a day we couldn’t believe would ever happen.
Our first thoughts this week are for Ameila and Darragh, her pride and joy, her husband Jim, her mother and father – Gaby and John, her siblings, extended family and friends of whom there are many. For them her absence from their lives every day can’t be replaced.
But her spirit lives on and it inspires all of us. The first we heard of Vicky Phelan was the day she stood outside a court room to say that she would not be silenced over the mistakes and shortcomings of others. She stood up for herself. More significantly she stood up for others.
We came to know her then as a woman who;
- Saw things as they are, rather than how others wanted them to be,
- Told it like it is to all comers,
- Worked tirelessly to find answers and make connections,
- Reached out to everyone involved, not just those who agreed with her, to learn more and try to do things better.
- Just wouldn’t give up.
Vicky set the standard for what effective, sustained advocacy can do in our health system.
Politicians on all sides earlier this year were quick to acknowledge her role in prompting the creation of the Patient Safety Bill – something that she had chased for years, a law that makes open disclosure a mandatory obligation of those charged with the care of a patient in the Irish Health system. Vicky would certainly have enjoyed the moment but only as a stepping stone.
Likewise, she would have celebrated the recommencement late last month of the processing in Ireland of CervicalCheck samples in the National Cervical Screening Laboratory at the Coombe Hospital, again, something she had campaigned on for a long time.
These, and the reforms of CervicalCheck guided by the recommendations of the Scally Report – which was commissioned in response to her revelations – are real changes that will benefit tens of thousands of Irish women for years to come.
But Vicky would be first to say that they are not enough. Her experience was that there isn’t coherence or co-ordination in the Irish healthcare system for the planning and delivery of women’s health and the necessities arising.
The urgent, intense, questioning attention that has surrounded CervicalCheck since 2018 will pass but many of the underlying systemic weaknesses that allowed its failure to happen are still there.
As we reflect on the year since Vicky left us, our desire to address those weaknesses is as strong as ever.
There needs to be a singular, programmed focus on women’s health. 32.18%[1] of the adult population between 16 and 65 is female. We appreciate that there are myriad demands on the system but it is time, publicly and unambiguously, to recognise the distinct and specialised health needs of women in the same way that there is recognition of aging (14.93% of the population over 65[2]) and childhood (20.77% under 16[3] [4]).
Vicky saw that bigger picture. Her courtside statement in 2018 was not to talk about her case but to alert others to what should have been done better for them. While many among us in 221+ are still trying to work through the impact of CervicalCheck on us personally, in the spirit of Vicky, as a priority, we want to ensure that what is learned, is put to good use for the good of all.
Vicky’s work got it across to decision makers that an excellent healthcare service is as much about how the patient feels about their care as it is about medical expertise, facilities, science and technology.
She also showed the value of the patient’s voice. Her initiative opened a conversation that Dr Scally and others have advanced where the experience of the patient is being recognised as a crucial contributor to health service planning and delivery.
As a community of women and families brought together by circumstances beyond our doing, 221+ will continue to follow the spirit of Vicky Phelan. We are determined that what she led us to learn will be put to good use. We will always be a voice for patients, sharing our experience and challenging assumptions. We are determined that healthcare for women in Ireland in the future will be better than it has been ever before.
And we will never forget Vicky Phelan as the woman who lit the flame.
For any media inquiries, you are welcome to contact 221+ by email via communications@221plus.ie.
For all other inquiries, please email info@221plus.ie.
Footnotes:
[1] The 2022 Census showed that Ireland now has a population of 5,149,139 made up 50.04% female, 49.96% male. Taking away the populations eligible for either paediatric or geriatric care and applying that ratio shows a population of 1,656,742 women between the ages of 16 and 65
[2] The 2022 census shows that there are 768,900 citizens over 65 in the State (https://www.cso.ie/en/releasesandpublications/ep/p-cpsr/censusofpopulation2022-summaryresults/populationchanges/)
[3] In establishing a national model of care for paediatric healthcare services in Ireland as part of preparations for the commissioning of the National Children’s Hospital, the Department of Health & Children established that up to the eve of their 16th birthday all children should be cared for in a paediatric setting. (http://thenewchildrenshospital.ie/wp-content/uploads/2011/08/National-Model-of-Care.pdf – p.6)
[4] According to ‘The State of the Nation’s Children’, an analysis of the 2022 Census data published by the Department of Children, Equality, Disability, Integration, and Youth, there are 1,069,403 children under the age of 16 in Ireland (https://assets.gov.ie/217089/c81cc2ed-a2c9-48d9-baa3-6c6a93488a80.pdf).