But Scotland has taken its first steps to helping those families in need. In giving its backing to stage one of the Human Tissue (Authorisation) (Scotland) Bill, MSPs at the Scottish Parliament have signalled their intent to make a difference.
More than 500 people in Scotland are currently waiting for an organ transplant that could save their lives. But there is a drastic shortage of donors, meaning many people are living with life-limiting illnesses and an uncertain future.
The proposed legislation looks to introduce an opt-out system, meaning everyone would automatically be considered to be an organ donor unless they wish not to.
British Heart Foundation (BHF) Scotland believes such a change will offer transplant patients the much- needed hope that a donor will be found before it’s too late.
A heart transplant may be the last option for people with end stage heart failure for which there is no cure.
Around 200 heart transplants are carried out in the UK every year, but more people could benefit if more donations were available.
One of the biggest concerns here in Scotland is there is a gap between the number of people who state that they would wish to donate organs and the number who go on to join the Organ Donation Register. We need this to change.
The proposed bill will enable those who support organ donation, but haven’t registered to have their wishes respected, by implementing a system in which those who do not explicitly opt-in or opt-out are deemed willing to donate their organs upon their death. This, however, is just one part of the story. Family consent levels in Scotland are also a significant concern and have a huge impact on those waiting for the call which could save their life. We have the lowest rate of family consent and also the lowest rate of organ donation in the UK.
International evidence has shown that family members are much more likely to authorise the donation of their loved one’s organs if the wishes of the deceased are well known.
The key difference for families living in an opt-out system, compared to an opt-in system, is that in the absence of a recorded decision, they will know their relative could have opted-out but chose not to do so. This is hoped to be the trigger for families who support donation proceeding when they are approached about their relative’s donation decision.
Since the introduction of a similar opt-out system in Wales in 2015, family consent rates have increased from less than 49 per cent to 70 per cent. It’s a situation we want to replicate here in Scotland.
It is also vital that families talk to each other about organ donation. Knowing our loved ones’ wishes in the event of their death and sharing our own is so important. It’s a conversation we all need to have.
While changing to an opt-out system in Scotland will offer a lifeline to the hundreds of people and their families waiting for an organ transplant, there is still much more that needs to be done. We believe the change in law needs to be supported by government investment in training, education and resources.
However the decision by the Scottish Parliament to approve stage one of the Bill is the first step – and an important one – offering us a significant opportunity to make a real difference to the lives of hundreds of people in Scotland. It should be grasped firmly with both hands by all 129 MSPs.
David McColgan, senior policy and public affairs manager, British Heart Foundation Scotland.