My name is Tamara and I have been a Specialist Nurse Organ Donation (SNOD) for over 2 years. Prior to this role, I had a long career in emergency nursing as a charge nurse and a nurse practitioner. One important fact about me is that I am a 1st generation Filipina and proud of my heritage. Like all immigrants, my parents came to the UK seeking a better life for themselves and their families back home. What they endured in the early 1970s in England to have the life we have now is incredible. They were the original Filipino pioneers and I’m so proud to be their daughter.
I’ve always had a passion for organ donation, for me, it’s the ultimate gift you can give to another person. When this job opportunity came up, it combined my passion and my strength in supporting grieving families through the worst time of their lives.
When I started, I didn’t realise some of the statistics surrounding organ donation especially with Black, Asian and Minority Ethnic (BAME) groups. From the transplant list, 29.5% are listed as BAME background. We know that BAME communities wait longer than our White counterparts to get an organ due to tissue matching. There is greater chance of transplantation succeeding if the donor and recipient come from the same ethnic background (NHSBT, 2021).
I don’t want to talk statistics but it’s good to have a basic knowledge of what we as a Filipino community are working against. What does this mean to us? We probably know at least one member of our family who suffers with hypertension, diabetes or kidney failure and we probably know someone within our extended family and friends group who are on dialysis or who is waiting for a kidney transplant. You can see the pattern.
But why are we getting less donors? Why do Filipinos and people of colour wait longer on the transplant list?
With my job, I have the pleasure of covering all the London hospitals on my on-call shift and as you can imagine, I have met many Filipinos and people of colour sharing their views on organ donation. I had many interesting conversations with them, some of which I have to bust the myths they knew about organ donation.
Some people said that they support organ donation but they don’t think that anyone would want their organs due to their hypertension or diabetes. But these should not be road block for one to do such selfless act. We had many successful donors with all sorts of medical histories.
During the pandemic last year in May, the Organ Donation law changed to an ‘opt-out’ system. This means that we could deem consent that your loved one agreed to organ donation unless they made their decision known via the Organ Donor register (ODR) or via your family and friends. What happened during that time was that there was misinformation being spread, especially within Black and Brown communities, about the government taking over our bodies and organs and that everyone had to opt-out on the ODR to prevent this. What we saw was that there were bursts of opt-outs based on misinformation (NHSBT, 2021). Even I received a text on WhatsApp to opt-out! The Filipino community is tight and I would implore you to correct those myths and misconceptions or send them my way.
The other reason for BAME communities to say no to organ donation is due to religious beliefs – either they want to be buried whole or that their religion doesn’t support donation. We work very closely with our faith leaders in the hospital and it’s always one of the first questions we ask as SNODs about religious or spiritual beliefs with the families. I know how important faith is in the Filipino community and it’s equally important that I support and acknowledge my patient and families’ beliefs. We will always ensure that we try to get a chaplain, priest, imam, rabbi to the bedside but of course, because of COVID, prayers are offered via phone or video.
No major faiths are opposed to organ donation and is often considered the last act of charity. The Catholic Church have made clear that ‘in itself it is a good and meritorious thing to donate our organs after we are dead’ (A Catholic Perspective, 2014).
I’ve had first-hand experience of supporting a Filipino family through organ donation and for me it was a challenge. I had to support a patient who I connected with as if she was my own Lola (grandmother). It felt that somehow I was part of their family and was grieving too. During this time, my priority is to support the family through this difficult time. But just like many Filipinos, the real family members of "lola" were based across the world. Good thing the technology nowadays allows us to easily connect with anyone regardless of location. We were able to connect the family via video calls and give them opportunities to speak with the doctors and nurses face to face. When it came to the point of discussing end of life, we were there to support the family through this. We offered a priest to come in for prayers which they wanted and we had a chance to speak about "Lola" and who she was as a person. The family had said that she was a kind and giving person in life and would do anything for anyone. We spoke about organ donation and although they didn’t know what their loved one’s wishes were in life, they felt that organ donation would bring some light into such a sad situation and the idea of helping someone in need with a life changing gift aligned with ‘Lola’s’ personality. It ended up being a successful outcome and the family was so pleased that their loved one was living on and helping someone else.
September is an important month. Organ donation week always falls in this month and this year it starts on the 20th September.
It’s a time to reflect on the donor and their families, what they have gone through and what they have given to strangers. This year, some of the London SNODs are doing a walk in a shape of a liver around a leading liver transplant centre. This is to commemorate those that are on the transplant list and those that have given the gift of life.
I would ask that during this week, please consider your decision on organ donation, make your wishes known to your family and friends and leave them certain in the decision you’ve made.
I appreciate that talking about death can be difficult. I had a brief discussion about my wishes with my parents over a bowl of sinigang. They understood it and respect that this is my choice and we’ve never needed to talk about it since. It can be as simple as that for you too.
If you want to make your decision known on the ODR please go to
and if you want more information about organ donation please go to
About the Writer:
Tamara is currently a Specialist Nurse in Organ Donation (Band 7). She has been a nurse for 22 years and a proud 1st generation Filipina in the UK.
References
NSHBT, 2021 Organ Donation and Transplantation data for Black, Asian, Mixed Race and Minority Ethnic (BAME) communities