In the last 12 months, 4,450 young cancer patients and their families across the UK have spent around £5 million travelling for treatment.
Last year Clic Sargent supported 40 local families whose children have received a cancer diagnosis.
The charity provided grants of over £5,000 to families struggling with the costs of cancer.
One Derry family have shared their experience of making the 140 mile round trip to Belfast for their daughter to receive treatment and the huge financial burden it placed on them.
During the most intense period of Fiadh Reed’s chemotherapy her family could spend at least £300 a month on travel expenses.
Fiadh was diagnosed with Acute Lymphoblastic Leukaemia (ALL) just days after her second birthday in November last year.
Her mum Christine explained that Fiadh was diagnosed with Leukaemia after she had been out of form, off her food and was spiking temperatures for around a week. “I had taken her to Out Of Hours and they took some blood samples. Two hours later we were told there was something not quite right and we were transferred to the Children’s Ward. In the early hours of the morning we were told it looked like Fiadh had Leukaemia.
“All I could think was: No, this isn’t happening, I am going to wake up.”
Christine and her husband Marc have an older child, Jacob who was just three at the time.
“That night I had told him I was taking Fiadh to the doctors and I wouldn’t be long, but I didn’t come home for four weeks.”
Fiadh was sent to the Royal Belfast Hospital the following day and started her treatment the day after.
Within three days of receiving her diagnosis she was in theatre having a bone marrow biopsy, which confirmed she had ALL, and had a central line put in for her treatment.
“I don’t think anybody really appreciates the distance until they are going through this. When you meet another parent from around this area you form an instant connection because the distance adds a whole level of complexity that no one really understands.”
The first round of Fiadh’s treatment, which she received as an inpatient, lasted 28 days. During some of this time Christine and other family members were able to avail of Paul’s House.
Christine said the ‘home from home’ which is supported by Clic Sargent was invaluable to her family at this time.
“I get emotional thinking about it. We had a base, we could bring Jacob, as he is not allowed on the ward. He didn’t get to see his sister that much, but he got to see me. During cancer treatment food becomes a massive thing, so having somewhere that I could make something for Fiadh that she actually wanted to eat was invaluable.
“We still use it a lot as outpatients because appointments can be really long days for us, especially when Fiadh needs blood or platelets. We could be there all day and the hospital is not a place you want to sit around. We can go to Paul’s House and Fiadh could have a play or a sleep.”
Fiadh’s treatment will continue until 2021 and all of it will be carried out in Belfast.
“On top of the treatment, Fiadh needs lot of blood transfusions and has had 30 so far. We could go up for treatment one day and the following day we find a bruise, meaning that she needs platelets, and have to go straight back up. Sometimes that has even happened on the same day.
“During the intense treatment we were up three times a week and on occasions we were up four. Each trip costs £25 in petrol and parking. We did not qualify for any travel allowance because even though I had to give up work, my husband was still working.”
Christine said she is ‘frustrated’ the government does not support working families with a travel grant.
“If there was a travel grant available, it would really help the many families from here who are so far away from the hospital.”
In the run up to the general election, Clic Sargent is asking the public to support their campaign calling on party leaders to commit to a Young Cancer Patient Travel Fund. Go to https://www.clicsargent.org.uk/join-our-fight/get-campaigning/travel-fund/