‘Something isn't working': Leona Macken urges cervical screening reform after HSE apology over smear failures
Leona Macken, the 38-year-old woman with incurable cancer who received a court apology on Tuesday from the HSE over the failures in two smear tests that led to her diagnosis, has said she would still encourage women to get screened and would ensure her daughters are vaccinated.
However, she said she believes there is 'something wrong' with the cervical screening programme that must be identified and addressed.
Speaking on Newstalk Breakfast and later on RTÉ's Today with Claire Byrne, Ms Macken said she was 'overwhelmed' by the public support she has received.
She said the HSE's court apology 'meant a huge amount' to her.
'Just the acknowledgement alone from the failures and everything, and even the words that they used, it was a really good conclusion, I suppose, to everything for us. We kind of didn't know whether we were going to get it, and there's been a lot of women in my position that didn't get that, so it is something that I don't take for granted,' she told Newstalk.
The mother of two girls, aged five and eight, said on Today with Claire Byrne that while she trusted the system, its failure in her case does not mean it won't work for others.
'I would never tell someone not to get a smear. It didn't work for me, but that doesn't mean it won't work for you.
'I have two little girls, they'll be definitely getting the vaccinations. I don't want people to take from this that I'm saying smears don't work, it's just they need to be checked more like. Something isn't working somewhere and that's what we need to find out.'
Receiving the apology was crucial for both her and her husband, Alan as she had felt that she needed 'to stick up for myself.'
She had done 'everything right' and had even paid for smears herself having seen the experience of Jade Goody.
'I did everything I was meant to and for them to then validate that was huge for me.'
Leona Macken and her husband Alan settled their legal action against the HSE, arising from what they said were failures in the CervicalCheck screening programme in 2016 and 2020. Picture: Collins Courts
Despite two clear smear results, she said she always felt something was wrong.
After two pregnancies, she assumed her symptoms might be due to hormonal changes, polycystic ovaries, endometriosis or perimenopause. But blood tests and ultrasounds were clear.
'I just did not think cancer at all because I knew I'd been so careful and I also knew it was a slow progressing cancer so I knew like that if there was something there I would have had abnormalities at some stage.'
Ms Macken's current stage 4 diagnosis means 'it's treatable to a certain extent, but not curable.'
"When I went in first, as you can imagine, being told you have stage 4 cancer, after being through everything else, and knowing this could have been avoided, it was gut-wrenching. I felt like, so hard done by, I'd done everything I could do. How did I get to this point,' she said.
Telling her family was 'horrific.'
She is currently undergoing quadruple therapy—'two chemotherapies and one or two immunotherapies,' she said.
"At this point, I'm just still not giving in. I want to be the one to do it.
'I have two little girls growing up now and I'm worried about them. What's going to happen, you know? It's not good enough what's happening. I shouldn't be going through this today. I shouldn't be living this today.'
Ms Macken welcomed an apology from health minister Jennifer Carroll MacNeill and said she would love to meet her.
'I'm a very open person and I'm very open to a chat," she said.
"They need to see these people in real life and see what they're going through, that they're not just a cancer, there are stories behind these people, where it's affecting my mom, my dad, where people's daughters, mothers, you know, and we shouldn't be going through it.
"That's the most frustrating part is it could have been avoided.'
Leona Macken settled her legal action against the HSE, arising from what they said were failures in the CervicalCheck screening programme in 2016 and 2020. Picture: Collins Courts
She said she refused to give up.
'I have too much to live for. It's such a beautiful life. I have two beautiful children. I have an amazing family and a huge support behind me. In every other aspect of my life, I've always said I'm so lucky. I just have the most beautiful life and I just don't want to leave it."
But, she added, serious reform is needed.
"The auditing was stopped in 2018. It hasn't been picked up since. It was stopped weeks after Vicky Phelan's case," she said on Newstalk.
"The Patient Safety Act of 2013 states that if this is even picked back up, it must remain anonymous. So the patients aren't necessarily being told the results. There are so many things in the system that need to be rectified like it needs to be looked at. It's just not good enough. It's people's family, it's people's daughters, kids are losing their mommies."
On Morning Ireland, Minister Carroll MacNeill offered a personal apology and said that women should not have to fight for access to their medical history.
'There should be open disclosure and that's very, very clear and I want to offer my apology too in this case because what you have here is a 38-year-old woman who has been impacted in this way and so have her family and that is so, so important.'
The Minister acknowledged that all screening programmes have limitations but said 'this should never have happened.'
"What we want is people in medical negligence cases to have absolutely timely open disclosure, they need a resolution to their case and they do not need additional stress going through the court process.
'Obviously the state needs to manage it to a certain extent in terms of the broader liability but these are very, very clear cases and it is really important that people are treated and not provided additional stress and additional hurt through a court process."
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