Family 'skimped to get by' during toddler's cancer treatment

For years, Alyssa McCrea wasn't sure when life with her young twin girls, Aria and Arabella, would feel normal again.

In summer 2022 Aria was diagnosed with leukaemia, aged three, and the family were thrust into a world of long hospital stays and regular travel.

Treatment would take two-and-a-half years in Belfast - a 110-mile return journey from the family's home in Derrykeighan, County Antrim - and costs mounted up as Alyssa made the journey up to four times a week.

In February, the government announced a bespoke fund to cover travel costs for families like Aria's facing the prospect of lengthy cancer treatment, but it only applies in England.

Stormont's Department of Health said it was "not possible" to set up a similar scheme in Northern Ireland, as there was not enough money in its budget.

Alyssa got the news of Aria's diagnosis just before she was due to start nursery.

"It was a massive shock, I couldn't even say the word cancer, I couldn't process it," said the now mum-of-three.

"Sometimes I'd have been up to the hospital for her treatment, we'd no sooner be home than she would take a high temperature and we'd have to go straight back up the road to make sure it wasn't anything major."

She was able to get a small amount of financial support from children's cancer charities as well as family and friends, but expenses kept rising.

"Sometimes I would have asked my mum after we'd ended up in hospital overnight if she could transfer me money as I wasn't expecting to be here, we were skimping to get by," she said.

She added that a travel fund like the one now in place in England would have given her "peace of mind" during one of the most stressful times of her life.

"A family doesn't plan for their young child to get diagnosed with cancer, they may not have savings behind them or may be in a bad position. Every little helps when you're going through that sort of treatment."

The government in England is setting aside £10m a year to pay for children and young people's travel costs up to the age of 24.

It has been called for by charities for some time, who argued that families have run up thousands of pounds in debt and had to cut back on essentials like food because of the cost of travel.

At the moment, financial support for this issue is heavily means-tested for families in Northern Ireland and is only made available to those on certain benefits.

The same is true in Wales, while Scotland has a more generous scheme.

The Republic of Ireland does not have a direct travel fund for children with cancer, but financial support is available through the Irish Cancer Society's Travel2Care scheme.

The Department of Health said it recognised patients undergoing treatment for long term conditions such as cancer might incur additional travel costs that could add additional financial pressure at an already difficult time.

The Help with Health Costs scheme provides individuals and their dependants with help for travel costs associated with medical treatment on referral from a doctor or dentist.

The scheme is open to individuals and their dependants, primarily on low incomes.

But a spokesperson added: "Given the significant deficit in the department's budget, it is not possible to consider any further financial assistance for young cancer patients and their families at this time."

The UK-wide charity Young Lives vs Cancer estimates that about 135 children and young people get a cancer diagnosis every year in Northern Ireland.

Its associate director of policy and influencing, Sonia Malik, said research the charity has carried out found it would cost Stormont's Department of Health about £300,000 a year to fund locally.

"That sounds like a large number but in the scheme of government budgets, it's not necessarily so large so we absolutely think it could be provided for as either a bespoke fund or as part of the national scheme," she said.

Alliance MP Sorcha Eastwood has been involved in the campaign to extend the inclusion of the fund to Northern Ireland, and has written a cross-party letter to the government asking them to ensure Northern Irish families are "not left behind".

"This fund would be a game changer for them. You cannot describe the pain and anguish when a loved one is going through cancer," she said.

She said Stormont's Health Minister Mike Nesbitt needed to "fight like hell" for those families to ensure they got the same support that people in England will now have access to.

As for Aria, she is happy and healthy again, having just celebrated her seventh birthday with sister Arabella.

Her mum, thankful that they are through the other side of treatment, hopes that by speaking out other families will, in time, get the financial help they did not.