At Genetic Alliance UK we get asked this question a lot. Many of the patients we work with are not s…
There are currently 6642 people across the UK waiting for an organ transplant – some of them will die waiting for that call. Many of our member organisations represent patients with conditions that can cause damage to certain organs. This means that many of the patients they support may require an organ transplant at some point in their lives. The number of people waiting for organs considerably outstrips the number of organs that become available for transplant.
In the UK population 70-90% of people report being in favour of organ donation, but in 2012 only 29% of adults were actually on the Organ Donor Register. This means that people who believe in organ donation do not get the chance to donate their organs because they have not made their wishes known, and it is assumed that they are not willing to donate. Currently the UK arrangements mean that if someone passes away without registering a preference, the responsibility to decide whether or not organs should be donated is passed to their close relatives. It can be hard for families to decide whether to donate their loved one’s organs after their death if they had not registered a choice.
From today, Tuesday 1 December 2015, the way you become an organ donor in Wales has changed. The assumption upon death will be that you have deemed consent, unless you have registered a desire not to donate or have made your wishes clear to someone before your death. This is called a ‘soft opt out’ system of consent.
These changes will apply to all adults who are over 18 years of age, have been living in Wales for over a year and are considered to have the mental capacity to consent.
Organs donated in Wales will still go onto the centralised list for the UK – so it is still really important that interested groups and patients continue to push for change in the other three nations of the UK. Scotland and Northern Ireland both have private members bills introducing opt out organ donation currently progressing through their devolved legislative bodies and we’ll be watching closely to see the outcome of these.
Whether you want to be an organ donor or not, and whether you live in Wales or not, it is important that everyone starts talking to their loved ones about organ donation. You can join the donor register here, or register your decision here if you live in Wales.
If you have questions or comments about this work please contact the Genetic Alliance UK team.