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Doctors need training in how to ask grieving parents for their children’s organs says NHS, as number of donations plateau

This article was taken from: https://www.telegraph.co.uk/news/2019/03/04/doctors-need-training-ask-grieving-parents-childrens-organs/

By Sophie Barnes

Doctors need training in how to ask grieving parents for their children’s organs NHS Blood and Transplant has said, as the number of organ donations has plateaued.

Parents are being urged by the blood and transplant service to consider organ donation when their child dies as new figures show the number donating has not changed in more than five years.

Health and Social Care Secretary Matt Hancock, who is backing a new NHS campaign to drive up the number of donors, said people “must not shy away from this difficult, and potentially life-saving, conversation.”

“Hundreds of young lives were saved last year because of the selfless actions of 57 families. We must find the strength to have the incredibly difficult conversations that have the potential to save the lives of children and babies,” he added.

While donations from adults have risen by a fifth since 2003/4, the numbers from children have remained static.

Around half of families who are approached about organ donation following the death of a child consent to their organs being used, but half do not.

There are currently 177 children waiting for an organ transplant in the UK. In 2017/18, 17 children died waiting for a transplant.

In the same year, organs from 57 children resulted in 200 transplant operations, but this is barely up on the 55 child donors in 2013/14.

Angie Scales, lead nurse for paediatric and neonatal donation at NHS Blood and Transplant, said there are “many complex reasons” behind the static number of child organ donations but that when a specialist organ donation nurse is involved in conversations with families the consent rate is higher.

She said: “It’s not just about educating staff to refer, or to be able to have that conversation with families, because obviously we have the specialist nurses and one of their jobs is to be able to have that conversation with families about donation.

“What we’re trying to work towards is to enable specialist nurses and clinical teams to have a discussion together at an early point when they’re doing their initial planning around end of life in terms of children,” she added.

Young children often need organs that match their size, and it can be particularly difficult to find the right sized hearts for children and babies.

While adults on the urgent heart transplant list typically wait 29 days for a new heart, children wait 70 days.

As a result of this desperate need, NHS Blood and Transplant has launched a new strategy to drive up the number of organ donations among under 18s.

Measures include more support for families and dedicated training on organ donation for clinical staff caring for paediatric patients.

John and Kerry Darling took the decision to donate their daughter Karis’s organs after she died in 2011.

Mr Darling said: “The NHS people were wonderful. They give us regular updates, letting us know what’s happening with the patients that received organs from Karis.

“Every day’s really hard for us but knowing there’s people out there who have benefited from our daughter just gives you a little bit of comfort.”

Children can join the NHS organ donor register in England, although parents must give consent for donation.

The NHS agency said doctors and nurses need training in how to identify potential organ donors as well as how to have the conversation with parents about donating.

A government organ donor taskforce in 2008 said all clinical staff likely to be involved in the treatment of potential organ donors “should receive mandatory training in the principles of donation” and the report published today said this recommendation “is as true today as it was 10 years ago”.

NHS Blood and Transplant said the new strategy aims to embed organ donation, when possible, as a routine end of life choice.