If you continue without changing your settings, we’ll assume you’re happy to receive all cookies from the BMA website. Find out more about cookies
When you visit any web site, it may store or retrieve information on your browser, mostly in the form of cookies. This information might be about you, your preferences or your device and is mostly used to make the site work as you expect it to. The information does not usually directly identify you, but it can give you a more personalised web experience.
Because we respect your right to privacy, you can choose not to allow some types of cookies. Click on the different category headings to find out more and change our default settings. However, blocking some types of cookies may impact your experience of the site and the services we are able to offer.
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms.
You can set your browser to block or alert you about these cookies, but some parts of the site will not then work. These cookies do not store any personally identifiable information.
These cookies are required
These cookies allow us to know which pages are the most and least popular and see how visitors move around the site. All information we collect is anonymous unless you actively provide personal information to us.
If you do not allow these cookies we will not know when you have visited our site, and will not be able to monitor its performance.
These cookies allow a website to remember choices you make (such as your user name, language or the region you're in) and tailor the website to provide enhanced features and content for you.
For example, they can be used to remember certain log-in details, changes you've made to text size, font and other parts of pages that you can customise. They may also be used to provide services you've asked for such as watching a video or commenting on a blog. These cookies may be used to ensure that all our services and communications are relevant to you. The information these cookies collect cannot track your browsing activity on other websites.
Without these cookies, a website cannot remember choices you've previously made or personalise your browsing experience meaning you would have to reset these for every visit. In addition, some functionality may not be available if this category is switched off.
Our websites sometimes integrate with other companies’ sites. For example, we integrate with social networking sites such as Twitter and Facebook, to make it easier for you to share what you have read. These sites place their own cookies on your browser as a result of us including their icons and ‘like’ or ‘share’ buttons on our sites.
No-one looks forward to discussing death with their loved ones, or thinking about what happens to our bodies after we die. This Organ Donation Week we’re encouraging the nation to start the conversation but it remains a sensitive, emotional subject; to some people, a remote possibility, and for others, too starkly in focus to consider.
It’s certainly something no parent wants to confront but there are many, like myself, who’ve found themselves in the unenviable situation where they must decide what happens to their child’s organs.
Many doctors will find themselves in a conversation with families - in and potentially outside work, including parents, other relatives, and patients themselves, in need of information about organ donation. Can our organs or tissues be used if individuals die at home? How long do we have to decide? What will happen if a decision to proceed is made? How can I be sure we’re following their wishes?
When our wonderful boy Alfie passed away aged nine, even though we had anticipated his death, and were ourselves both registered organ donors, we had never discussed or thought about Alfie as a potential organ donor.
Alfie was a very smiley, cuddly little boy with considerable learning difficulties and complex needs. We knew he was life-limited, and had always imagined he would die at home or in the hospice. Unexpectedly, we found ourselves in hospital, having to accept that his time had come, and that even getting home for a few days was not feasible.
At the point where we had agreed we’d move into a side room, and prepare to withdraw treatment, knowing death would follow quickly, it was my non-medical partner who asked about organ donation.
My immediate thought was it probably wasn’t medically possible because of his complex medical background, and how sick he then was. Also that the medical team caring for him would have raised this if he was. But I was mistaken, and I’m a neurologist who ought to know better. Sixteen hours later, Alfie did die in our arms, in private. That he was also an organ donor has been a source of great comfort and pride for us, but was so nearly a missed opportunity.
If I wasn’t well enough informed, and the brilliant healthcare team supporting us also almost missed this chance, are you? Can we expect the public to know what they need to, if health professionals including doctors don’t themselves know enough about the key criteria, practicalities, legal and ethical issues? Other than if you are in a few specific roles, the medical workforce receives little to no training in these areas.
This is why I approached NHS Blood and Transplant, and with them have now developed a freely available online learning course for healthcare professionals to help them understand the key processes with organ donation. I collaborated with a brilliant team of specialist nurses in organ donation, unexpectedly including Gordon Turpie, one of the nurses who helped look after Alfie in those final hours, and helped create treasured memories out of a situation no-one would choose.
The course is aimed at a multi-professional healthcare audience, including doctors at all levels and is also now part of the undergraduate medical curriculum at my own university. There isn’t a better time to learn more about organ donation as preparations are underway for England to adopt a ‘soft’ opt-out system long advocated for by the BMA.
After a public consultation, the Government announced on 5 August that it expects the new system to be in place from spring 2020 and is supporting a private member’s bill proceeding through Parliament.
Alfie’s death, left a hole in our lives and our hearts, but that his death was life-saving for other families has helped enormously. We gratefully received an Order of St John award on Alfie’s behalf and it’s been a great source of comfort for us knowing we didn’t miss the opportunity to give this life-changing gift to the world.
Find out more about the Futurelearn online course, Organ Donation: The Essentials for Healthcare Professionals, here.
Hannah Cock is professor of epilepsy and medical education at St George’s, University of London and a consultant neurologist at the Atkinson Morley Regional Neuroscience Centre, St Georges University Hospitals NHS Foundation Trust
Thank you for this article, and sharing the beautiful legacy that Alfie has given the world. .
How moving and powerful. Thank you Alfie and family