With this being Cervical Cancer Awareness month, Sarah O’Mahony speaks to Emer Connolly and Jodi Moloney who tell their own stories and discuss how the HSE should move forward.
Emer is a UCC student from Cork who in February 2021 was diagnosed with early stage cervical cancer and began treatment to stop it’s progression following a long battle to have her symptoms legitimised. Jodi is a Maynooth University student from Dublin whose tweets detailing her experience attempting to access gynaecological care in Ireland while presenting with symptoms of cervical cancer went viral.
Due to the information deficit that exists and the lack of awareness of cervical cancer symptoms, Irish women can be sidelined by the health system. The striking part of Jodi’s story is that she learned of the clinic she will soon attend in Poland through TikTok. Young Irish women document their travels abroad, staying in hotels near clinics in the UK, Poland, Spain and Romania where often times they find other Irish women navigating the same journey. They have taken up the government’s responsibility to fully inform women of their options. Jodi tells me that a wave of women have contacted her sharing their experiences and divulging that travelling abroad for care was a new revelation to them. It is evident that the creation of an easily accessible resource providing information on the length of public waiting lists for specialist gynaecological care, what to expect from such appointments and possible healthcare options abroad is needed. Also, a recommendation by The Radical Listening Project commissioned by the government, which held workshops to give women from diverse backgrounds an opportunity to voice their concerns, pointed to the multilingual development of such resources to promote accessibility.
When speaking to Emer, a major theme was the perception within the health system that young women are unlikely to have major gynaecological problems. “It took me over 12 months to have my symptoms validated and receive an accurate diagnosis”. The general lack of understanding of cervical cancer symptoms is indisputable. Both women had an experience of visiting A & E and being dismissed. Jodi waited 12 hours in excruciating pain to be asked if she was pregnant or possibly constipated by a doctor. She was eventually discharged with constipation tablets. Emer was rushed to hospital by ambulance after collapsing from pain and was also questioned about pregnancy until finally told she ‘probably had endometriosis’ and was discharged with painkillers. Young women who present with gynaecological needs are not prioritised. This of course leaves us with the expectation of the prioritisation of older women. However, Jodi shares with me that her sister who is over 25, with kids of her own and has a history of cysts must wait six months to see a specialist privately. The government must address gaps in care across all age groups. Sláintecare is the government’s plan to introduce a universal healthcare model similar to the NHS. The improvements that this system will supposedly offer will be worth little if only one demographic sees an improvement. The phrase universal healthcare is not just for fun.
The system of public and private healthcare is often described as classist. However, the option of private healthcare does not offer much benefit for women in constant pain on long waiting lists. Along with Jodi being served with more than a year’s wait within the public system to see a specialist, the private clinic she was referred to has not had any available appointments since her referral in October. Similarly, it took Emer 8 months for her to source just a private smear test. Access to private healthcare did not offer either woman much relief, with Emer stating that her “mental health plummeted” while she waited. Emer sees herself as “highly privileged to have private healthcare” as her wait was substantially lower than that of the public system. However, it is still appalling and incredibly frustrating. There are currently 30,000 women in Ireland who have been on a public waiting list for more than 18 months seeking their first hospital appointment. For women who have cysts, this length of time exposes them to the risk of their cyst rupturing which can have complications such as sepsis. As Emer states “there is such a fear that by the time you do get seen, your symptoms or condition could be far worse”. It is a discriminatory system where the most vulnerable are at most risk. One would hope that in the next ten years, the divide between public and private will be removed by Sláintecare.
Discrimination against those from disadvantaged communities is not a new concept. The history of asylums, workhouses and mother and baby homes points to the institutionalisation of the most vulnerable in society under corrupt and degrading conditions. Today, the quality of healthcare provided to women in Direct Provision is similarly degrading. As discussed by Dr Elinor Cleghorn in her book Unwell Women, women’s healthcare intersects with race, class and money. Government recognition of this is necessary for true policy transformation.
Controversially, Irish policy dictates that only women over 25 can access a free cervical cancer screening. Jodi’s tweet advocating for the abolishment of the age limit gathered 25,000 likes. Taking another view, in the US you can access a screening over the age of 21 and this sees 60 percent of women under 25 take advantage of this. Emer shares that “women should not have to be a certain age or be in a privileged position [to access private healthcare] to be able to avail of a screening”. Emer’s journey had a major impact on her mental health, college participation and other aspects of her life. Meanwhile, her experience is described as a rarity by the HSE. Even though the government repeats that very few women under 25 develop cervical cancer, women like Emer endure complete indifference. “I spent months ringing GPs searching for appointments but was never able to get beyond the GP receptionist. Once I mentioned my age (I was 21) I was instantly shut down and told I was “too young.” It’s beyond obvious that the theme of “too young” is a damaging one.
Before this experience, Emer was already fearful of the HSE’s treatment of women as a result of the CervicalCheck scandal. This involved 221 women whose revised test results were kept from them. Once Vicky Phelan publicised the scandal, CMO Tony Holohan advised against a review of the programme, advice ignored by the government. Phelan’s story is well known, as is the fact that neither the HSE nor the laboratory involved in her test ever admitted to wrongdoing. Twenty women have since died, yet those involved still evade accountability. It is also notable that Holohan has never publicly apologised. Why should women have faith in a system that continues to hurt them?
Jodi suggests that if the HSE admitted to their faults instead of ‘shifting the blame’ elsewhere, the cycle of hurt would stop. Emer says that change is “overdue”. A beacon of hope is Dr Vicky O’Dwyer of the Rotunda Hospital in Dublin, who spoke on Newstalk in response to Jodi. Dr O’Dwyer acknowledges that countries such as Poland follow preventative strategies regarding women’s healthcare while the Irish system only refers women to specialists once a problem has developed. Dr O’ Dwyer is opening up a conversation that hundreds of thousands of women want to see happen. As Jodi describes, she spoke up because too many women are “too scared, too traumatised or don’t know how to”. Like Jodi, Emer aims to share her story going forward “in hopes that it will raise awareness and prevent girls from ending up” in her position. Emer also emphasises “the importance of being vocal about how you are feeling to family and friends”. The strength that Emer and Jodi have demonstrated is immense and is something that requires support. It really does take a village.
Initiatives like the Radical Listening Project are encouraging. We must hold the expectation that it will not fade into a placatory action but instead begin the easing of access to general and specialist gynaecological care, the development of patient informed undergraduate and postgraduate curriculums for healthcare professionals, the provision of more funding as well as greater research and communication with the women that the health service serve. During Dr Cleghorn’s interview with Dave Fanning, she explained how sociological and medical research is now being conducted to examine how we can unlearn deep rooted medical gender biases. The future is bright, especially one that learns from women such as Emer and Jodi. By speaking out, they are adding to a history of women that have helped us heal. Their experiences must not be in vain.