NI solicitor whose fiancé died six weeks before wedding on her charity work for ‘forgotten’ cancer sufferers

Leona O’neill received an MBE from the Princess Royal in recognition of her dedication to fundraising for people diagnosed with sarcoma. By Áine Toner

IN March, a Northern Irish solicitor was appointed an MBE for services to charitable fundraising for people with sarcoma. Leona O’neill, originally from Coleraine but living in Belfast, established The Boom Foundation in April 2013 after losing her fiancé Philip to sarcoma, a rare form of soft tissue and bone cancer, six weeks before their wedding.

The Foundation’s aims are to raise money to help people who have been diagnosed with sarcoma and maintain awareness of an often-forgotten cancer.

It remains the only charity solely dedicated to sarcoma patients in Northern Ireland. To date, it has raised almost £500,000 through donations and fundraising.

Its financial assistance, which is not means tested, offers a range of support to patients and their families.

This can include travel expenses if patients need to commute for treatment, or a loved one’s accommodation if they need to stay close to a hospital, or respite weekends in between bouts of treatment.

“For children who are going on for treatment, we’ll buy them ipads or some kind of video to allow them to have their own device in the children’s hospital,” explains Leona.

“We have paid for car modifications, following patients’ amputations. We’ve paid for travel insurance, where it’s been particularly high for patients going on a trip. We’ve paid for trips on occasions where palliative patients are having a last holiday with their families.

“We have paid for private tuition for patients here and that GCSE, A-level stage because there’s no private tuition from the education authority for those for that age group.

“[We can] help with prosthetic legs. So on the NHS, they’ll only get that very bog standard first prosthesis, and for some patients who want to continue running or go into sport, we’ll pay for that.”

Leona is keen to praise the volunteers and trustees who work together to make The Boom Foundation such a success, explaining they do not take a salary and work in their free time.

Any money raised goes directly to helping patients and the Foundation is aligned with Sarcoma UK.

“We have a shared email address, and we pick up work as and when we can,” explains Leona of The Boom Foundation.

“So for instance, I might spend a lunchtime and I can do a referral so I can phone a patient during my lunch, if I’m walking out or pick up a couple of emails during the day. We want people to know that the money they’re raising is going to the patients as opposed to going to printing things or advertising.”

Though her full-time job is as a solicitor, when asked Leona says both roles complement the other, offering ‘invaluable’ skills such as understanding legal documents.

“Even just communication skills, being able to communicate with the health professionals and the other charities and patients as well. It’s just that those interpersonal skills, I think, are invaluable.”

Anyone receiving a cancer diagnosis and possible subsequent treatment plan can understandably feel isolated or alone.

“I think that’s so true of cancer across the board,” says Leona.

“The problem with sarcoma as well is and people don’t realise is that when you’re diagnosed with sarcoma, the first thing you’ll be told and the first things that you’ll read is about how rare it is, and that because there’s over 100 different subtypes of sarcoma, you might not ever come across someone who has the same subtype as you.

“With breast cancer and testicular cancer and all of those different types of cancer that are so serious as well, because there’s so many more people diagnosed with those types of cancers, there’s more research, there’s more drugs available, there’s more awareness around them, there’s more charities focusing their time on those particular cancers.

“So for sarcoma patients, they feel isolated in the diagnosis, they feel isolated in the care and support that they might receive. And also not being able to share the same experience with someone else locally.”

Many patients with different cancers will be discharged from hospital care at some stage – but this isn’t the case with sarcoma patients.

“The sarcoma patient will never be discharged from care because of the very high incidence of reoccurrence. They have to be scanned every three to six months to make sure that there’s no metastasis,” says Leona.

“There’s about 100 new patients each year [diagnosed in Northern Ireland] but on top of the 100 from last year and the 100 from the year before there’s a huge number across Northern Ireland who are continually being reviewed so the numbers of patients are huge because they don’t really get that. Because of that continued review, they never really feel like they’re out of out of care.”

Leona speaks of scanxiety — patients receiving a letter inviting them to a three-monthly review scan.

“They’re anxious about that scan, then they’re anxious about the results that may take another few weeks or a month to come in. And then before you know it, you’ve got the other the next letter for the next scan. It’s just never ending.”

The Boom Foundation can act as a conduit for patients and their families, asking questions or providing explanations during what is an emotive and fraught time.

“At the time I was a newly qualified solicitor, so my salary wasn’t great at the time,” explains Leona of when Philip was ill.

“He was off work, and he was in sales, so his salary was largely driven by his sales. So, when he wasn’t working, he got very little and then when his sick pay ran out, he effectively had nothing. We still had a mortgage to pay, bills to pay.

“At that time, obviously we were paying for a wedding.

“I remember filling out a form for Macmillan, and I remember trying to get him DLA and the amount of paperwork involved in that. I was a solicitor, albeit a trainee at the time, I was used to doing paperwork, and I just remember thinking if there wasn’t somebody jumping up and down to get these things done, I mean, how on earth would anybody get these things done.”

Philip, she says, was a private person who’d often say, ‘You’d think I’m the only person in Northern Ireland with cancer’.

“I remember saying to him, but you’re the only person that I care about at the minute who has cancer.

“That was his way of saying to me, would you calm down. He was always really embarrassed going into these consultations with his consultant and he would just quite happily just sit there and be spoken to.

“Whereas I was the one asking all of the questions. It did make me think that there are patients still sitting there being spoken to and not even able to ask certain questions.

“I think the health professionals that we have here are superb, I really do,” she continues.

“But they’re really massively under pressure and they can’t be having telephone conversations with patients a day after they’ve had a consultation with them just because the patient wasn’t able to take in everything that was said at the time.

“But we can; we’ve that time that we can actually sit down and explain to them this is what they meant by that, and this is the drug that you’re going to be on and, why don’t we ask these questions at your next review. We can help the patients to sort of do that.”

In March 2017, Leona was awarded a Point of Light honour, an award that recognises inspirational volunteers.

“She was informed of the upcoming investiture in October 2023.

“I’ll be honest, I’ve got a friend who does really sophisticated pranks. For a time, I was thinking is this real?” she laughs.

“When it came out in the new year’s honours list. I was totally overwhelmed.

“I think this is a typical Northern Irish thing as well, we’re not very good at taking a compliment. I couldn’t do Boom if it wasn’t for all of the trustees and volunteers.

“To me, the MBE was personal, but it was more about a great recognition for all of the work that’s done behind the scenes.

“When I got the MBE, a part of me would rather it had been something for the charity, but it just took me a little bit of time to understand actually it is about the charity, it was for the charity.

“It’s just, I suppose, recognition of what work I’ve done too. But I suppose that took me a little bit of time just to get my head around that you know, I wanted it to be more about everybody else too.” The day, she says, was ‘lovely’ and ‘beautiful’.

“Windsor itself was just beautiful. It was first time I’d been there. It was as close to feeling royal that you’ll ever feel I think because the minute you get there, all the staff are congratulating you and it felt very genuine.” The ‘very intimate’ setting saw Princess Anne award Leona with her MBE, as her husband and mum looked on, alongside a string quartet.

“A lot of people who helped me in the charity as well, some of them been personally affected by sarcoma,” says Leona.

“I know that they get a lot out of being able to give that support back. Everybody was really delighted obviously that I got the MBE too.

“I know that a lot of the other volunteers and trustees do as well, they wouldn’t do otherwise.

“It is a lot of work and it’s a lot of your own free time given up, so I think you need to get something out of it to be able to do it 11 years on.”

For more information on The Boom Foundation, see www.theboomfoundation.co.uk