#20 Organ Donation: hope and transition after an unexpected death with Vicki Caldwell, mother of organ donor Fi.

Organ Donation: hope and transition after an unexpected death with Vicki Caldwell, mother of organ donor Fi. This very special episode explores a mother’s lived experience of traumatic and unexpected death of losing a child, saying yes to organ donation and the transition to finding hope and a new way of living. The podcast is released to coincide with the second anniversary of Max and Keira’s Law (on 20.5.2022), which brought the change to an opt out system for organ donation.

Key messages from guests

• Fi  signed up for the Organ Donation at a very young age and initiated conversations with family and friends. 

• The simple, clear, consistent and compassionate messages supported Vicki and her family to understand the events on the day and demonstrate the value of good communication. 

• ICU can be a place of tranquillity and peace, a testimony to all staff involved. 

• Organ Donation did not complicate grief, but focused on a positive legacy and memory.

• After her death, Fi was able to save four people’s lives through her wish to donate her organs.

• How difficult it is to make a decision without having conversations in advance.

• Max and Keira’s Law was enacted on 20.5.2020 which means that consent is presumed with people having to opt out if they wish not to be a donor. The Law is named after Keira Ball, who died aged nine in 2017, and Max Johnson, the young boy  12, who was saved by her heart.

• Although it is an opt out system it is so important to ensure your families are aware of your wishes regarding Organ Donation. 

• As well as the life saving Organ Donation, the charity FEES Fund has been established in memory of Fi  (Fi's Enrichment Education Support (FEES) Fund.

• More work on Organ Donation and supporting conversations with schools can be found on FEES Fund.

• Out of such sadness new ways of living can be built.

Resource

• FEES Fund is a registered education charity set up in memory of Fiona (Fi) Braidwood. Fi died in a car accident in March 2016 just before her 18th Birthday. Her family and friends actively fund raise in her memory and have set up the trust fund, which awards grants three times a year. Fi’s love of learning, she benefited greatly from the opportunity to take part in enrichment education support activities  in the community where she lived and at the schools she attended.

• Research shows there are many benefits for children and young people who take part in extracurricular activities. Such activities can result in improved education outcomes, the building of social and emotional skills and improved social inclusion particularly when children from disadvantaged backgrounds take part.

• FEES Fund provides grants and the opportunity for children and young to take part in extracurricular activities when money is tight and there is a financial barrier to taking part. FEES Fund grants have funded music lessons, swim camps, musical theatre opportunities, funding for outdoor adventure, scout-based activities, mountain biking, forest school activities, community-based gardening projects, maths clubs, foreign travel and school enrichment trips.

• How to apply for a FEES Fund grant

• Donate to FEES Fund via the donation page

• Watch a film or read more about Fi’s gift of Organ donation 

• Follow @FEESFund on Instagram

• Find out more about Max and Keira's Law (effective from 20th May 2020) 

• Watch Donor family Donor family stories including a video of two mothers meeting up after transplant. 

• Find out more about Angie, mother of an organ donor - NHS Organ Donation

• See  Advice and guidance provided about writing letter to donor families and recipients 

• Find out more about the Donor Family Network 

• Find out more about NHS Organ Donation

Vicki Caldwell is a regional OU Social Work academic with a specialist interest in work-based learning, employer collaboration and apprenticeship delivery.

Following the sudden and unexpected death of her daughter in March 2016, Vicki has become interested in ‘active grief’: activities that don’t make your grief worse and can help with finding a new way of living with hope following a loss. Some of Vicki’s active grief strategies include walking challenges with friends, a regular yoga practice, spa visits, journaling and involvement in community-based activities that have been inspired by her daughter’s memory.

Vicki is the founding Trustee of FEES Fund (https://www.feesfund.org) an education charity set up in memory of Fiona Braidwood awarding grants to remove financial barriers so young people can take part in enrichment activities. Vicki has shared her experience of organ donation in support of NHSBT ‘Leave Them Certain’: a public awareness campaign around the importance of having conversations about wishes for organ donation. The recent law change to opt out means families remain at the centre of the decision-making process and are still approached to support this decision if no objection has been registered.

Vicki is a member of the Open Thanatology research group, North Bristol organ donation committee representing the views of donor families and part of NHS Blood and Transplant (NHSBT) ‘National Donor Families advisory group’. The latter is a group that ensures donor families’ perspectives are included in research, policy development and have influence within service improvements.

Find out more about my Bespoke Consultancy

• Service analysis for teams seeking to improve EoLC or prepare for CQC

• End of Life Care Education

• Lasting Power of Attorney Consultancy

• Talks and presentations

If you’d like to find out more about my work contact me.

What one thing will you do?

It would be great to share what resonated with you from this episode, what is the one thing you will do differently? Head to Twitter, Facebook or LinkedIn to continue these important conversations.

Thanks to all my guests for working with me to share their knowledge, experience and stories about Advance Care Planning. I hope you enjoyed listening and have insights to take away; I love hearing your reflections on the series and look forward to reviews on Spotify where you can also subscribe to the series.

Clare

Important Conversations about Important Conversations.