Leona Macken encourages women to get smear tests and says her daughters will get HPV vaccine
Leona Macken, the 38-year-old woman with incurable cancer who received an apology in court on Tuesday from the HSE over the "failings" that occurred in two smear tests which led to her diagnosis, has said she would still encourage women to get a smear test and she would have her daughters vaccinated.
However, she said she felt there was 'something wrong' with the cervical screening programme that needed to be identified and addressed.
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Speaking on Newstalk Breakfast and then RTÉ radio's Today with Claire Byrne show, Ms Macken said she had been 'overwhelmed' by the support she has received from the community.
Ms Macken said the HSE's apology in court 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 Breakfast.
The mother of two girls, aged five and eight, told Today with Claire Byrne that she had trusted the system, but just because it had failed her did not mean that it would not work for others.
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'I would never tell someone to not get a smear. It didn't work for me, it doesn't mean it's not going to 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 in court had been very important to 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.'
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Despite two clear smears, she knew something was wrong; she explained. Having gone through two pregnancies, she thought perhaps it was just her body changing or maybe polycystic ovaries, endometriosis or perimenopause. Blood tests and ultrasound scans 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 diagnosis of stage 4 cancer means 'it's treatable to a certain extent, but it's 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?'
Telling her family had been 'horrific'.
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Ms Macken is now undergoing quadruple therapy. 'That's like two chemotherapies, one immunotherapy, or two immunotherapies. 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 the apology from the Minister for Health, Jennifer Carroll MacNeill and said she would love to meet with the Minister.
'I'm a very open person, and I'm very open to a chat. They need to see these people in real life and see what they're going through, that they're not just a cancer, there's stories behind these people, where it's affecting my mom, my dad, we're 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.'
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Ms Macken said she would not 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 something needs to be changed. The auditing was stopped in 2018. It hasn't been picked up since. It was stopped weeks after Vicky Phelan's case. 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's 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' people's daughters, kids are losing their mommies,' she said on Newstalk Breakfast.
On Morning Ireland, the Minister for Health offered her personal apology to Ms Macken 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.'
Ms Carroll MacNeill said that the screening programme would 'always have some limitations,' but what had happened to Ms Macken should not have happened.
'It shouldn't happen, 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 when some of the issues are so very very clear and that has to change.
'There is a very different way that we need to approach medical negligence cases and how they're treated, and that is one of the most important things that I will be trying to address during the period that I am Minister for Health.'
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