CLIC Sargent asks government to create patient travel fund
Today, and every day, 11 children and young people in the UK will hear the devastating news they have cancer.
Here in Scotland, around 240 youngsters are diagnosd with the disease every year.
The charity CLIC Sargent last year supported 571 children and young people with cancer in Scotland – both the newly diagnosed and those who have had the disease for several years.
And the charity is also there for parents who, as well as dealing with the fact that their wee one has cancer, have to contend with so much more besides.
Travelling great distances for treatment, juggling family and work life and struggling with finances – it’s a hard slog for parents who are trying to stay strong for their child.
And it’s for that reason CLIC Sargent gathered a petition during Childhood Cancer Awareness Month calling on UK Governments to set up a Young Cancer Patient Travel Fund for children and young people with cancer and their families.
More than 24,000 signatures were gathered for the petition, which has now been presented to the Department of Health.
In Scotland, families of children and young people with cancer face a round trip of 68 miles, on average, to get to and from hospital for treatment but many have to travel much further.
Clare Laxton, CLIC Sargent’s assistant director of policy and influencing, explained: “With just three specialist centres in Scotland, some families have to travel long distances to receive life-saving treatment.
“We had one family recently who faced a 360-mile round trip and another family who had to travel to Great Ormond Street in London, doing an 800-mile round trip.
“Some childhood cancers are so rare they can only be treated at one or two specialist hospitals across the UK.
“There’s no choice in having to travel and families are having to pay for it.
“Travel is the biggest additional cost familes have to face. On average, a family of a child with cancer faces spending £600 a month extra, on top of every day expenses and bills.
“This is often money families struggle to find, especially if parents have had to give up work or cut their hours to be with their child.”
And it’s for this reason that CLIC launched its Young Cancer Patient Travel Fund petition.
Clare said: “None of the travel cost schemes run by the UK governments are fit for purpose or reflect the unique needs of children and young people with cancer.
“However, we are hoping the petition will lead to meetings with governments to bring about change.”
The Scottish Government this year introduced a £1.5 million fund to help ease the financial burden of travel on parents of premature and sick newborn babies and help meet the additional costs they face as a result of their baby being in hospital.
CLIC Sargent believes the Neonatal Expenses Fund could be used as a blueprint for a similar fund for those with childhood cancer.
Clare said: “Something like that for parents of children with cancer would be hugely beneficial.
“The number of families is relatively small so the expense would not be vast.
“We have written to the Scottish Government with our petition asking them for a meeting to discuss this in more detail.
“We needed to prove that there’s a national expectation that families facing childhood cancer should get help with transport costs.
“The fact we’ve managed to amass more than 24,000 signatures for our petition sends a clear message.”
Meanwhile, CLIC Sargent is doing all it can to help families who are struggling financially as a result of their children’s diagnosis.
As well as providing grants for families, it also runs two home from home facilities in Edinburgh and Glasgow, which enable families to stay together during treatment.
Clare said: “Families can stay there for free, for as long as they need to.
“Our aim is to keep families together when their child is having treatment so there is room for parents and siblings to stay.
“It gives them a chance to meet other families who know what they’re going through and can support each other too.”
CLIC Sargent is also working with ScottishPower and British Gas to provide specialist support.
“We have a direct route to a specialist team who can help with reduced tarrifs,” said Clare. “Often heating bills escalate when a child is ill so it’s a big help for families who are struggling.”
The charity is now in talks with other energy suppliers in the hope of extending the scheme further.
To find out more about the charity, visit www.clicsargent.org.uk.
How you can help to fund a new home
The principle treatment centres for children and young people with cancer in Scotland are the Queen Elizabeth University Hospital in Glasgow, the Royal Hospital for Sick Children in Edinburgh and Royal Aberdeen Children’s Hospital.
Patients can opt to have treatment at their local district hospital but specialist treatment often means travelling further afield.
CLIC Sargent currently has two home from homes in Scotland, one in Glasgow and the other in Edinburgh.
With the Edinburgh hospital on the move, the charity is fundraising to pay for a new property.
The existing Edinburgh home, CLIC Villa, has supported thousands of families since it opened in 1997. More than 300 families have stayed at the house over the last two years, many for several months.
Kate Lee, chief executive of CLIC Sargent, said: “The new home will allow us to continue to provide a welcoming place to help families spend more time together and ease the burden of travel costs.”
Ciaran’s House, designed by LDN Architects, will be built on Old Dalkeith Road.
It will boast nine en-suite family bedrooms, as well as communal kitchens, laundry and social areas, helping families spend time together.
But the charity still needs help to raise the final £155,000 to cap a £3.3 million appeal.
To donate to CLIC Sargent’s appeal text HOME to 70020 to donate £3 or visit www.clicsargent.org.uk/donate.