Labour has pledged to create a dedicated travel scheme for young cancer patients and their families, ensuring that the NHS covers all costs associated with travel to and from hospital for cancer treatment.

Labour’s £5 million annual Young Cancer Patient Travel Fund will be available to all children in England, regardless of income. It will be a fund based on need, not income.

It will be delivered through a centrally administered fund, supported by an online application system where families complete their travel distance information, which is verified by a health or social care professional, for families to receive retrospective payments for their travel costs.

Childhood cancer already places a deep emotional and physical strain on families, without the extra worry of being able to afford expensive travel costs for treatment.

We should be doing all we can to support these vulnerable children and their families when they need it most. We must make sure that wealth never stands as a barrier to treatment.

• Labour’s new commitment of £5m for a Young Cancer Patient Travel Fund will be met as part of the costed NHS funding plans which Labour set out at the General Election.
• According to Cancer Research UK, there are around 4,450 new diagnoses of cancer in children and young people every year in the UK.
• Because of its rarity, treatment for children and young people’s cancer is delivered in specialist treatment centres across the country, known as Principal Treatment Centres (PTCs).

According to research by the charity CLIC Sargent:

• Parents spend an average of £600 in additional expenses a month as a result of their child’s active cancer treatment- one of the top extra expenses is travel.
• Children and young people with cancer are forced into travelling an average of 60 miles for treatment- often for specialist cancer care which isn’t available at their local hospital.

• • 40% of young cancer patients and their families make round trips of 50 miles or more when undergoing treatment at their main treatment centre.
  • Young cancer patients travelling to Bristol Royal Hospital for Children have the longest average journey of 63 miles each way, a round trip of 126 miles. By comparison, those living in the county of Avon travel 16 miles for treatment.

• According to CLIC Sargent, when treatment is at its most intense, families spend £180 on travel to and from treatment every month if travelling five days a week.
• Travel costs can include train tickets, fuel, car maintenance and taxi fares.
• As treatment for young cancer patients can go on for years, families are often plunged into debt.
• Young cancer patients and their families travel twice as far, and spend twice as much, on travel costs as adults with cancer.
• CLIC Sargent estimate that families travelling the ‘average’ travel distance to and from treatment would spend around £1,000 over a year of treatment.

Average round trip journey to Principal Treatment Centres in England, according to CLIC Sargent research

(Top 17 hospitals with highest number of children and young people being treated for cancer)

Young cancer patients and their families get little support for travel costs, and most of them don’t qualify under the Government’s current system, the ‘NHS Healthcare Travel Costs Scheme’ (HTCS)

• The HTCS is the national assistance scheme that reimburses hospital travel costs to those on low incomes. The scheme is run by local hospitals and funded nationally by NHS England.
• To qualify for help with travel costs under the scheme, you must:

o  Receive an income related benefit or allowance (e.g. income-based Employment Support Allowance, Jobseeker’s Allowance or Universal Credit) or

o  Meet the eligibility criteria for the NHS Low Income Scheme, which is currently set at £16,000 and

o  Have a referral from a healthcare professional.

• These criteria, in particular the £16,000 threshold, mean that many families affected by childhood and young people’s cancer cannot access the scheme. Cancer costs all families regardless of income.
• The scheme is administered via a reimbursement scheme. This means that families would need to collect receipts and regularly take them to a hospital cashier to be reimbursed. This is not a practical option for families or young people who already have cancer treatment and daily family life to juggle.
• CLIC Sargent argues that with a maximum household income threshold of just £16,000 to qualify for the HTCS, too many families where a child has cancer are left struggling without the financial support they need.

o  66% of families affected by childhood and young people’s cancer rely on some form of non-state assistance in order to meet additional travel costs during treatment, for example charity grants, help from friends and family, and CLIC Sargent loans.

• In July 2017 CLIC Sargent research with parents found that:

o  Only 6% of parents received help from the NHS HTCS

o  78% of parents were not aware the NHS HTCS existed

o  40% of parents thought that assistance from the government with travel expenses could help them cope better financially

o  66% of parents told us they rely on some form of non-state assistance in order to meet additional travel costs during treatment, for example charity grants, help from family and friends and loans.

• On 11 September 2018, in a response to Karen Lee MP’s PQ, Steven Brine MP stated there is “work underway to review the service specifications for children and young people with cancer services” but made no mention of extending HCTS.

Labour’s commitment has the support of CLIC Sargant and has previously been recommended the APPG on Children, Teenagers and Young Adults with Cancer (APPG CTYAC)

• In 2016, CLIC Sargent in their #CancerCosts report, called for an urgent review of hospital travel assistance scheme.
• The 2018 APPG CTYAC Inquiry into Patient Experience (Listen Up Inquiry into Patient Experience) also called for the Government to commit to reviewing the travel assistance available to young cancer patients and their parents/carers and make recommendations for reform.

In 2018, CLIC Sargent called for the creation of an annual £5 million Young Cancer Patient Travel Fund.
Source: https://www.clicsargent.org.uk/content/childhood-cancer-awareness-month-1