Better funding urged over fertility preservation for children with cancer

Some centres providing such treatments “heavily” rely on charitable funding, researchers said, as they called for a central funding pot to ensure “equitable provision” across the UK.

Advances in childhood cancer treatments mean that 80% of patients survive for the long term.

But many of these children encounter fertility issues in later life which have been caused by their cancer treatments.

As a result some children who are about to receive cancer care can be offered fertility preserving treatments such as “banking” sperm or ovarian tissue.

But researchers, led by academics from the University of Leeds, said anecdotal evidence suggests there is a variation in “provision and availability” of NHS funding across the UK for these supportive interventions.

So they set out to question the current funding arrangements for these treatments at the 20 paediatric cancer units of the UK.

Their study, published in the journal Archives of Disease in Childhood, involved a survey of experts from each of the units.

Of the 18 centres which replied to the survey, every centre had referred patients for fertility preservation in the preceding 12 months.

All of the centres had referred for ovarian tissue storage and sperm banking.

But researchers found regional variation when it came to referrals for mature egg and testicular tissue storage.

Six in 10 centres in the devolved nations had referred patients for mature egg collection and storage, but none of the centres in the Midlands or East of England had done so.

For testicular tissue storage, all of the centres in the Midlands and East of England had referred one or more patient, but this was true for only 80% of centres in the south of England and across the devolved nations.

Researchers also said that there was “wide variation” in funding sources for fertility preservation.

Of the centres aware of their funding source, half reported that ovarian and testicular tissue storage was funded by charitable sources – this increased in England compared with the rest of the UK.

Centres located in the Devolved Nations reported no reliance on charitable sources for funding.

But in England there was a “heavy reliance” on charitable sources, the authors said.

Three in four centres across the Midlands and the East of England and all centres across the North and South of England said that they relied on charitable sources for the funding of ovarian and testicular tissue storage.

“Inequality exists in provision of fertility preservation for children with cancer across the UK,” the authors concluded.

“There is lack of formalised government funding to support international guidelines, with resultant geographical variation in care.”

They added: “This study has for the first time confirmed marked variation in provision and funding of fertility preservation services for children with cancer across the UK.

“There is heavy reliance on charitable funding, particularly in England, compared with the other countries of the UK.

“Centralised NHS funding should be made available to ensure equitable provision of fertility preservation services and delivery of internationally acknowledged quality standards to all young people with cancer across the UK.”

Commenting on the paper, Dr Louise Soanes, chief nurse at the Teenage Cancer Trust, said: “Every young person with cancer should have an informed conversation about their fertility options, regardless of whether or not their treatment is likely to affect their fertility.

“But research undertaken by Teenage Cancer Trust found that over a quarter (29%) of respondents said they did not have a conversation about fertility with any health professional.

“We consistently hear from young cancer patients that they are not getting the information they need to make informed decisions on their fertility before treatment, such as fertility preservation. The impact this can have later in life, especially psychologically, can be devastating.

“We welcome this new research that highlights the need for fair and equitable access to fertility treatment and urge all health professionals to have honest and open conversations with young people in their care about these issues, from diagnosis.”

An spokesperson for the NHS in England said: “Cancer survival rates for children have increased substantially thanks to greater awareness, better access to tests and more lifesaving NHS treatments and all children with cancer should be advised about their options for fertility preservation before treatment begins in line with guidelines set out by Nice.”