The blood from umbilical cords may be a better source of stem cells than bone marrow. Simon Usborne meets the couple campaigning to make donation of it easier

Today, all things being about average, 2,000 babies will be born in Britain, or roughly one every 80 seconds. Almost without exception, their umbilical cords will be clamped, cut – and incinerated. And this, say a growing number of parents and health professionals, is waste so flagrant it borders on the criminal. Far from being dead on arrival, these sinewy flexes are potential lifelines long after they would ordinarily be turned to ash.

Umbilical cords, and the placentas to which they are attached, contain blood, known as cord blood, that is not like your average bag of Group O. Rich in stem cells similar to those found in bone marrow, cord blood is invaluable in the treatment of a range of conditions including blood cancers such as leukaemia, as well as sickle cell anaemia and failures of the immune system. "It really is a magical resource that can potentially save thousands of lives," says Henny Braund, the head of the leading Leukaemia charity, the Anthony Nolan Trust (ANT).

Cord blood's great advantage is its ease of use. "It can be taken off the shelf and, unlike bone marrow donors, it doesn't change postcode, grow too old to donate or become ill," says Dr Derwood Pamphilon, clinical director for stem cells and immunotherapy at NHS Blood and Transplant. "There's also evidence it may be, for some groups, an as-good or better source of stem cells than conventional bone marrow transplants."

Donation is as simple as, well, giving blood. After birth, the cord is cut as normal. Before it and the placenta are discarded, a clinician pierces the cord with a needle and drains up to a quarter of a pint of blood into a plastic collection bag. The sample is then sent to a storage facility, where it is processed and put on ice for up to 20 years. In that time, somebody – perhaps a child with leukaemia – might just need it to live.

But despite a shortage of stem cell donors – especially those from ethnic minorities – barely a drop is saved from the ocean of cord blood that arrives with babies every day. Natalie Salama-Levy wanted to join the tiny minority of British mothers in a position to save their cells. She gave birth to a baby boy, Yoel, last week at her local hospital, the Royal Free in North London. She asked about cord blood donation at her first consultation. "It was obvious they didn't participate," she recalls. "We were told that because the hospital was so big there wasn't any kind of system in place, so we couldn't organise a collection."

Salama-Levy's husband, Lionel Levy, lost a close friend to leukaemia 18 years ago. Sue Harris was part of a Jewish community that was woefully unrepresented on the bone marrow register, leading Levy to launch a recruitment drive for thousands of minority donors. It was through this work that he became aware of cord blood, whose therapeutic properties were discovered in Paris in the late 1980s. Levy now works to raise awareness through a cord blood charity, but even that wasn't enough to secure a donation for his wife. "The whole situation was infuriating," he says.

There are two major cord blood banks in Britain: the NHS Cord Blood Bank and the Cord Blood Programme at the ANT, which also runs the country's largest bone marrow register. The NHS has collected 14,500 donations in the past 13 years, while the ANT's register includes more than 300 samples harvested since 2008. The NHS is committed to expanding its provision, having set a target of collecting 20,000 cords by 2013, but this is a long way short of the 50,000 cord blood units the ANT says would be enough to meet 90 per cent of transplant requests. Last year, the charity ran searches for more than 200 cord bloods but was forced to import almost 100 units from as far away as Japan.

Participation is a problem. Only six hospitals, all of them in and around London, offer cord blood donation. The NHS collects at Barnet General, Northwick Park, Luton and Dunstable, and Watford General, while the ANT has a unit at King's College Hospital. Dr Pamphilon says that, in many cases, stretched maternity wards don't have the capacity – or budget – to take cord blood, adding that it would be "impractical to suggest any mother anywhere could donate".

Those campaigning for the expansion of cord blood donation have an unlikely ally in the shape of Sir Richard Branson. His Virgin Health Bank, launched two years ago, is one of the biggest players in a growing market for commercial cord blood storage. Most set-ups offer their services as the "ultimate insurance policy" against your own baby developing a condition that may require a transplant. It's a sales pitch some critics believe preys on the fears of parents-to-be. "There is no published evidence to suggest cord blood collected in the event that a donor's child or family member becomes ill and needs stem cells will be useful in the future," says Dr. Pamphilon. "The potential use is speculative."

It's a criticism heard by Virgin Health Bank, which charges £1,500 for its service. It keeps 20 per cent of each of the 600 samples it has collected so far for private use, while freezing the majority in a public bank. "We're unique in creating an altruistic donation pot," says Virgin Health Bank's chief executive, Dr Rajan Jethwa. "And it would be a mistake to say private donations will offer zero value in the future."

The race to make cord blood donation easier and more widespread often seems hamstrung by rivalry between the public, private, and charity sectors, and a lack of direction. "It's unnecessarily complicated," Levy says. "One institution isn't going to solve this – we need a common plan." Virgin Health Bank has struggled to include the cord bloods it banks for public use on any of the key transplant registers, though it says it is close to striking an agreement with the ANT. In the meantime, an all-party parliamentary group on cord blood and stem cells, which meets this week, is trying to raise awareness in government.

In the meantime, mothers outside the catchment areas of the six hospitals that do offer collection must call on commercial banks if they wish to donate. Even then, as in Natalie Salama-Levy's case, they are frequently stymied by resistance from overworked midwives at hospitals with no system in place to administer collections or to allow third parties to perform the procedure. "It's such an unbelievable waste," she says. "Why would you not want to save a life from something that would be thrown away?"

Dr David Grant of Leukaemia and Lymphoma Research said: "Collecting cord blood is not as simple as your article implies (Cord blood: a wasted lifeline? 2 March). The Human Tissue Authority has expressed concern that 'unlawful umbilical cord blood collection may compromise safety and quality standards'.

"The HTA issued this warning following '... a number of incidents where parents collected cord blood unlawfully, and other cases where medical staff felt pressured to collect cord blood unlawfully without specialist training.'

"Since 5 July 2008, it has been a legal requirement that cord blood can only be collected under an HTA licence by suitably trained staff. This is in place for the protection of mother and baby and to ensure that any collected stem cells are uncontaminated and would be safe to use.

"The article may also reinforce a common misunderstanding – that stem cell transplants are the best treatment for leukaemia. Only about 3 per cent of patients with leukaemia receive donor transplants - with improved drug treatments for some types of leukaemia it is likely the rate will fall even lower."