Moving children’s stem cell transplants to Ireland would ‘ease burden’ on patients

Children with rare inherited diseases currently have to travel to UK for treatment

Children from ethnic minorities are disproportionately affected by inborn errors of metabolism, and inborn errors of immunity and haemoglobinopathies, which require stem cell treatment. Photograph: Colin Anderson
Children from ethnic minorities are disproportionately affected by inborn errors of metabolism, and inborn errors of immunity and haemoglobinopathies, which require stem cell treatment. Photograph: Colin Anderson

Repatriating stem cell transplant services for children with rare inherited conditions to Ireland would ease the burden on patients and their families and save the HSE money, according to an official review.

The HSE would have sufficient bed capacity to accommodate stem cell transplant patients currently treated in the UK, according to the health technology assessment by the Health Information and Quality Authority (Hiqa).

However, the ability to bring the service to Ireland would rely on the recruitment of additional nursing and support staff, it notes.

The review suggests a phased approach to any change in order to support the build-up of sustainable capacity in the service.

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“While there is substantial uncertainty in relation to costs, it was estimated that repatriating care for these patients could lead to cost reductions for the HSE,” according to the authority’s deputy chief executive and director of health technology assessment Dr Máirín Ryan.

“When a child needs to undergo a stem cell transplant this experience is incredibly stressful for families. The need to travel abroad increases the stress further, with children and their parents having to remain abroad for periods of between two and six months. This means that families are separated from one another for long periods.”

“Our assessment found that repatriation of stem cell transplants to Ireland would reduce the financial, logistical and emotional burden that these families face.”

Currently stem cell treatment for children with inborn errors of metabolism, and inborn errors of immunity and haemoglobinopathies, are performed in the UK. These conditions disproportionately affect ethnic minorities in Ireland.

There is an allogeneic haematopoietic stem cell transplant (HSCT) service in Crumlin children’s hospital, where children with leukaemia and other conditions receive their treatment.

Hiqa found that repatriating other patients to Ireland would potentially double the number of paediatric allogeneic (donor derived) HSCT procedures carried out in Ireland every year.

Paul Cullen

Paul Cullen

Paul Cullen is a former heath editor of The Irish Times.