Monday 23 September 2019

'Talk of value for money annoys me when lives are on line'

Christmas: Vicky has big plans for 2019 but will spend the festive season at home with her family

New arrival: From left is Vicky with new family member Alfie, Amelia, husband Jim, and son Darragh at home. Photo: Liam Burke
New arrival: From left is Vicky with new family member Alfie, Amelia, husband Jim, and son Darragh at home. Photo: Liam Burke
Eilish O'Regan

Eilish O'Regan

When it comes to choosing the most inspiring people of 2018 the top accolade must surely go to Vicky Phelan.

The 43-year-old Limerick mother-of-two, who was battling advanced cervical cancer when she fought her High Court case against CervicalCheck last April, refused to sign a confidentiality clause.

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She only discovered her cancer in 2014 three years after incorrectly getting the all clear.

She wanted to alert other women with cervical cancer that they may also have received wrong smear test results and an internal audit revealing these errors had probably not been disclosed to them.

"Something in me told me it was the right thing to do. I was quite ill at the time and had just had my first course of the drug Pembro. I did not know if it would work."

Her emotionally charged address on the steps the Four Courts set in train a public outcry and demands on CervicalCheck to come clean.

We now know 221 women received wrong results, 20 of whom have since died.

An inquiry report found CervicalCheck was "doomed to fail at some point", laboratories were not visited for four years and nobody was in charge.

Eight months on Vicky is enjoying great health and renewed energy thanks to her response to sessions of the experimental drug Pembro.

But along with that has come the realisation that being an advocate for change and patient empowerment has been the job she has been looking for all her life.

"I am not paid and I do it voluntarily. I used to wonder at people who say their work does not feel like a job. This now feels like what I was meant to do," she said, having previously had a career in education.

While she is content to largely leave the drive for improvements in cervical screening to fellow campaigners Stephen Teap and Lorraine Walsh, she is broadening her crusade to give patients more rights and change ingrained cultures of resistance in the health service.

She has secured a commitment that the HSE will provide the drug Pembro to women with cervical cancer outside the 221 group.

"I am concerned it is taking so long. I am also worried that there appears to be some decision to force oncologists to first get permission from the HSE before prescribing a high-tech drug which is not licensed for a specific cancer. If that was the case I would never have had access to Pembro."

It was due to her own research and pressure that she got access to the drug last spring after turning down palliative chemotherapy which she knew would leave her very unwell.

It was initially funded by public donations to her go-fund-me appeal.

"I offered to pay it back but people would not take it. So now I am going use it to employ a medical researcher to help other patients with advanced cancer to get on a drug trial in Ireland or abroad."

The office will be piloted for six months in the Mater Hospital in Dublin and aims to give patients who have run out of options with existing treatment other avenues.

"I was able to do it because part of the job was research. Other patients may be too unwell or not know how.

"I get very annoyed when I hear people talking about percentages and value for money in deciding whether to give patients access to drugs.

"I have not spent a day in hospital since I started on the drug. If I was on palliative chemotherapy I might be in and out of hospital with infection."

Along with her drug treatment she also has regular infusions of vitamin C.

And when she has time she goes to Galway for hyperbaric oxygen therapy, which is given to some patients undergoing radiotherapy and it increases the amount of oxygen in the blood.

"Patients need to be given choice to make their own decisions."

She warns against making new laws that take away choice.

"I agree with preventing ads for treatments promising a cure which are alternative. But I am taking these in conjunction with medical treatment."

She does not follow a special diet and abandoned an earlier strict regime.

"I don't eat a lot of red meat but I have a glass of wine."

Christmas will be spent taking a well-earned break with her husband Jim and two children Amelia (12) and Darragh (7).

It has been a hectic schedule of meeting with politicians, medics and media appearances to continue to drive change and maintain the momentum.

There is another busy 2019 ahead and more insights on which test results were due to negligence or screening limits.

Vicky has also been a worthy recipient of great honours including an honorary doctorate in the University of Limerick and presentations of awards.

And there has also been a much-loved addition to the family in recent weeks in the form of Alfie, an easygoing bulldog.

"Getting Alfie has been the best decision we have ever made.

"We are mad about him.

"He is a big slob who just loves hugs and cuddles. I never expected a dog to have such impact on me as Alfie."

Irish Independent

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