This post has been a long time coming, I've had a few challenges over the past few weeks. Things I needed to deal with offline. It's been a struggle, but I remain positive and upbeat about the future.
Being able to attend the meeting held on the 10th January at London's City Hall was an opportunity for me to meet up with some of the many brave people who have gone through what I'm dealing with. They've come out the other side and were able to give me encouragement going forward.
Yes, it was a positive coming together in that sense. At the same time, I felt the voices in the room were preaching to the choir. I would go so far as to say everyone was in agreement, more needs to be done and perhaps local government funding could go some way towards making that happen, because currently, I'm seeing the efforts of many people, be it patients or their families appear fragmented and driven solely by the individual's desire to move forward.
Individuals setting up their own campaigns to highlight what is a widespread problem in BAME Communities. Charities doing what they can to shoulder some of the burden and the NHS doing what they can for all Communities. There doesn't feel or seem to be (in my experience at least) a central hub. A single point of contact for BAME Community members to visit - both patient and potential donors to get information that relates to them as Ethnic Minority People in London / The UK. I think this is a real problem in 2019. We should have fixed this long ago. Hopefully now, steps will be made to address this point specifically - and that's not said to undermine the many many efforts that have gone before.
The Organ Donation statistics have shown there is a problem with BAME Communities with Organ Donation. So, it's a reasonable judgement to say we need to address the issues currently existing in those communities separately to other Communities. We need to address the fears, myths and falsehoods circulated and believed by so many Black and Asian people. We need to tackle the Religious and Cultural beliefs people have and show them, all of the major religions of the world support the participation of Organ Donation. Why? Because it's viewed as an act of giving, a generous gift to help save the life of another human being. There is no greater gift one person could give to another.
Thinking back to the Assembly meeting, in attendance, were a number of courageous people. One lady shared her powerful story of dialysis treatment and the impact it had on her everyday life. She spoke of having to spend close to six hours out of her day, three times a week, attached to a machine. This doesn't include her travel time to and from the hospital. That's approximately eighteen hours of her week, which could have been spent working towards her dreams or enjoying family life. She's spent ten years so far waiting for a life-saving kidney and still with no clear idea when her call will come. Granted, many will say "dialysis can sustain life" but it doesn't give a person the freedom or control to crucially LIVE their life!
This was just one of many example stories happening across London and the Nation. Another contributor spoke of visiting a dialysis unit and seeing a greater proportion of Ethnic faces being dialysed. Hearing this, congers up the image of God's waiting room! Picture it, people left on dialysis, waiting for that all-important phone call to tell them an organ has been found - it's heartbreaking.
Why? Because we haven't adequately tackled the problems in our Community. This doesn't just affect the person in need of a Donor, it impacts their entire family too.
Another testimony that struck a chord with the audience was that of DJ Lonyo, he received a double transplant (kidney and pancreas) within 4 months! This is by far the exception, it's far from being the rule. But wouldn't it be great if this was the rule?
To hear of a black person, transplanted in such a short time frame is often classed as "rare" and "lucky" when in my opinion this should be the norm! We have much to do as a community before we can truly claim that.
Black people are severely disadvantaged, compared to their white counterparts. Many people still think Organ Donation is something that only occurs after death. This just isn't the case, and I feel it's this message, we need to be spread into the community - along with many other key points on the topic. In many cases (granted not all), nobody actually has to die for another to live. If more people volunteered to become a LIVING DONOR, they would create the environment and opportunity for a planned transplantation to take place. Which is by far a better situation to be in, compared to a cadaver or deceased donor situation. Don't get me wrong, it's not a perfect system, and I mean not to criticise it - it's what we have right now and we have to work with it. But I want to leave you in no doubts that there are clear advantages to having a living donor organ form part of the transplant procedure. In my case, as you know I'm in need of a replacement Kidney. This is what I'm seeking as a first and preferred option - given the choice.
I took many things away from the meeting at the Assembly. The one I can't help but focus on is that the clock is ticking and time is short. I speak of my own personal situation. It is important for people to Register to become an Organ Donor, that's absolutely right and proper. But we should also be talking about Living Donation at the same time AND finding ways to help patients to convey the message to friends and family, for they are the ones who need help understanding the importance of this. They need to be told about the advantages of receiving a living organ... Generally speaking and statistically, the recipient is more likely to have a better and longer-lasting transplant experience.
The alternative? Waiting for a call, perhaps in the middle of the night to say a donor organ has been found (following the death of another person). That phone call is very much dependent on a computer algorithm to decide the deceased Donor Organ's fate, and in turn which of the many Recipients will be lucky this time around to be given the chance at life off of the donor waiting list. Much like a lottery ticket - it could be you(!) If more people came forward, we could start to make inroads into the waiting lists! We know many have waited years and others continue to wait, not knowing if they'll receive a call before THE FINAL CALL.
Some hard facts: People from BAME communities are more likely to need an organ transplant, but the fit and healthy among us are not open to considering donation - OR worse still - block the thought of organ donation altogether.
I certainly agree, there needs to be more done to raise the profile of living organ donation, it should be on an equal footing if not higher than the deceased donor process. I appreciate society needs time to catch up with those of us in need. However, time isn't on our side. Which is why I think "baby steps" isn't the correct approach we should be taking. People are dying while we move slowly on this. Believe it or not, I am torn. Even though I think we should be moving quickly on this, I too recognise Joe public needs to be held by the hand and walked from today's situation into the future - where I want things to be - in regards Organ Donation. I'm there already. Joe public doesn't like change at the best of times - let alone fast change! *sigh*
In addition to the ways in which people learn about organ donation, we need to recognise Social media can play a massive part in educating the people. It's a double-edged sword, it has the potential to be used as a force for good or evil. Organ Donation advocates are leading the charge, sharing the messages, spreading the positive Organ Donation word... After all, the focus on social media should be to generate conversation, to normalise Organ Donation and make it a topic we can openly discuss and learn more about. As an example, I speak of the courageous team behind Share Your Wishes‏ on Twitter @share_wishes and they're just one of many.
Unfortunately, there are also those who would seek to spread inaccurate, false information. Fake news as it were. Rumours, presented as facts have, and continue to be allowed to spread unchallenged. This is what I see as being the greatest threat we face today within our Community, second only perhaps to knife crime. Some may think the use of the word "threat" is too strong, I'd disagree. Black and Asian people are negatively impacted by a number of illnesses which require Organ Donation to be a part of the treatment/solution. But if we do not have enough BAME people signing up to become Donors in the first place. What will happen?
Accurate information needs to be made more readily available, from reputable websites, frequented by black people. From my own personal experiences, the resources I've found have often been poor, very much generic or even out of date. They do offer the basic information but they don't go far enough in tackling the many misconceptions circulating online.
I'm going to stop here, as I feel I've poured more into this post that I had expected to.
Thankfully, this special event was recorded in full and has subtitles for my hearing-impaired friends out there.
The heartfelt and real stories of patients and families waiting for a life-changing gift.
The wider community need to listen to these testimonies and the difficulties our brothers and sisters are experiencing because of a shortage of donors. Whether we're talking about kidney, liver or heart failure the need for donors remains great.
The below video is a recording of the Meeting at London's City Hall, I've broken it up into 3 parts so you don't have to sit through the breaks. Enjoy!

On the hunt for BAME Organ Donors


PART 1

PART 2

PART 3



#BAMEdonor
#AssemblyHealth

You can drop me a message either via Twitter @Naomi_My_Story or HERE I love reading all of your messages of encouragement.
If you are moved by my story and want to get more involved, please consider doing one of the following two things:

1. Registering to become an Organ Donor here: https://www.organdonation.nhs.uk/ if you do, be sure to let me know!
New registrations give me a boost!

2. If you want to help me directly by being tested to see if you could donate, you will need to be aware of the following:
  • Firstly, I am BLOOD TYPE O-NEGATIVE it's important you know this in advance to be considered for a possible direct donation.
    Failing that, an indirect donation is still a possibility. Please still get in touch using the below...
  • Secondly, please complete THIS FORM and someone will get back to you to move things forward.

AGAIN, THANK YOU!