Finley Larcombe was a typically active seven-year-old boy, who enjoyed karate and playing with his friends. His mother Natasha describes him as “full of beans”. When he started experiencing chest pain last year, doctors thought he had simply pulled a muscle.
When this was followed by a fever, Natasha was told he likely had a virus. But he also had pains in his legs, and when she started researching his symptoms online, the feeling grew that something wasn’t right.
“I think Finley’s got cancer,” she told her husband. Her worst fears were confirmed last December, when her son was diagnosed with leukaemia.
“I went into complete and utter shock and devastation,” says the 30-year-old mother-of-three. “I can’t even begin to explain what it felt like. When people say it’s all just a bit of a blur, it’s cliched, but it really is.” The diagnosis was enough to deal with on its own. But matters were complicated for Natasha and her family by the fact that, living in the Somerset market town of Bridgwater, they were not very close to a hospital that could treat Finley. Their local, Bridgwater Community Hospital, has a minor injury unit and one ward.
Natasha initially took Finley there with his leg pain, and he was sent on to the paediatric ward in Musgrove Park Hospital in Taunton, a 12-mile journey along the M5, which Natasha says can take take “45 minutes to an hour on a bad day.” After that, her son was sent to Bristol Royal Hospital for Children for treatment – almost 40 miles from their home.
“The first seven months were the worst,” recalls Natasha. “We’ve had a lot of unexpected admissions for temperatures and so on, and at first we were going back to Bristol [every time]. You’re looking at a three-hour round trip.”
When Finley went into consolidation (therapy to kill any cancer cells that may be left in the body), the appointments took place in Taunton. “That was hell for us,” says his mother. For the next stage of therapy, called interim maintenance, they were back at Bristol again, travelling there every fortnight for an eight-week period. Then back to Taunton for delayed intensification, which reduces the amount of leukaemia in the bone marrow and nervous system.
Her family are not the only ones forced to make significant trips, an issue affecting many patients who do not live close to a hospital with relevant resources. Last month, Alison Rowlands expressed hope that the Government would provide help with the cost after having to make 200-mile round trips for her daughter Elin, 13, from Anglesey, who has had to travel to Liverpool’s Alder Hey Children’s Hospital for specialist treatment since her diagnosis in 2013. Each trip cost the family between £35 and £40, her mother said. “You worry enough about your daughter going through this horrible treatment without having to worry where the money’s going to come from to put petrol in the car,” she told the BBC.
Natasha’s family also suffered financially. “I haven’t got a job any more while I care for Finley, and travelling and parking hits your finances,” she says. But she and her husband, an engineer, have received some help in the form of a £200 grant from a hospital fund provided by Leukaemia Care, which The Telegraph is supporting as part of its Christmas Charity Appeal.
“It helped out majorly because you could fill your tank up and not have to worry for a while, and it helped pay for parking,” says Natasha, who previously worked as a transport manager for a haulage company.
Jasmine Barnett, 27, has also been helped by the fund since being diagnosed with acute promyelocytic leukemia, an aggressive form of the disease, in February. “I was training for the London Marathon this year and in January I had a bad ankle, which my doctor said was probably from over-exertion,” she says. “I later found out joint pain was a symptom of leukaemia.” She had been tiring easily and experiencing cold and flu-like symptoms, but was “dosing up on Beechams and ploughing through. I worked up until the day of diagnosis.”
Jasmine, a childminder who also has two young children of her own, returned to her GP in early February. “I was having night sweats, bleeding gums, a bleeding nose and feeling awful.” He performed a blood test there, and six hours later, rang Jasmine and told her to go straight to hospital.
“I was admitted and within 24 hours had had my first chemotherapy and first bone marrow biopsy,” says Jasmine, who had initially thought the shock diagnosis must be wrong. Living in South Elmsall, a small town in West Yorkshire, she too was unable to be treated on her doorstep. Instead, she was admitted to Pinderfields General Hospital in Wakefield, a 26-mile round trip from her house.
“I was an inpatient for an entire month, so my husband and mum were coming to see me every day,” she says. “My husband was doing the majority of the travelling and parking, and it did add up to hundreds of pounds with the parking and petrol costs. As soon as I was released and back at home, I still had to go to hospital, sometimes every day. I was having to get different family members to take me, because I wasn’t able to drive.”
Because she is self-employed, she didn’t receive any sick pay. But Leukaemia Care approved her for a £200 grant to help with travel costs immediately after she applied. “[The travelling to hospital and parking was an] unexpected expense and it was so useful they were able to cover it,” she says.
Indeed, the cost of travelling for treatment can be an unanticipated extra burden for those already going through a frightening and difficult time. But it’s that one Leukaemia Care is well aware of, having carried out surveys of more than 2,000 leukaemia patients in 2016 and 2017 and discovered that one of the most important concerns was the impact of cancer on their finances. On average, 43 per cent of patients reported experiencing a negative impact on their finances, 64 per cent of whom had experienced an increase to their monthly costs.
The hospital travel fund was launched in April this year to help them fund travel to and from hospital appointments, with the money intended to cover fuel, wear and tear for cars, taxis, public transport costs and parking. It has proved overwhelmingly popular, according to the charity, which will have distributed £50,000 to patients and their loved ones by the end of this month.
Finley, now eight, went into remission after his first five weeks of treatment, but will continue his therapy until 2022, which means plenty more long journeys to Taunton for the foreseeable future. Jasmine is now having some of her appointments at Pontefract Hospital, about eight miles away - so not quite such an onerous journey, and returned to work again last month. For her, as well as so many others, the support Leukaemia Care provides will continue to make a considerable difference.
:: Leukaemia Care, which provides support to individuals and families affected by blood cancer, is one of three charities supported by this year’s Telegraph Christmas Charity Appeal. Our two other charities are Wooden Spoon, which works with Britain’s rugby community to raise money for sick, disabled and disadvantaged children; and The Silver Line, a 24-hour helpline and support service for lonely elderly people. To make a donation, visit telegraph.co.uk/charity, call 0151 284 1927