City Hall - Investigation into BAME Organ Donation 18/03/2019
Welcome back to my story. This latest entry has been a long time in the making. I've had a few challenges along the way. I've persevered and kept writing. As a result, I have plenty to publish over the coming days/weeks... but this particular entry has taken some time to get out of my system. I hope I've done it justice... You decide...
After the London Assembly's Investigation into BAME Organ Donation meeting in January, I was naturally keen to learn how the Assembly's Health Committee would interpret the many concerns raised by the attendees, and how best they would attempt to address their concerns. Not an easy task. Could they truly grasp the state of affairs? What solutions would they think up to turn things around?
{I previously shared my thoughts on the meeting in January, so for those of you new here, welcome please feel free to click the link above to go back to that entry.}
The date of this latest meeting had been eagerly anticipated, by myself and many others. I don't recall whether this follow-up meeting's date was given back in January, I think it may have been. Either way, after receiving an emailed invitation from the London Assembly the date was set - 18th March! My calendar welcomed it with opened arms. The countdown to new news had begun...
I couldn't help but reflect on the personal accounts shared back in January. So many examples of tragedy, generosity and acts of selflessness. So many brave loved ones fighting for what they believe in. Having previously been faced with the Organ Donation question. They recognise - through the pain of loss - the greater good, and the joy that can come from Organ Donation.
What we need to understand and remember, is that registering to become an Organ Donor is just the first step. We need to also ensure our loved ones know about our decision to donate after death as well.
The last thing we want - or need - is for our loved ones to be faced with learning about our Decision after our passing. So why not save them the distress, let them know in advance. We want our family to respect our decision, not block it whilst in a state of grief.
Having the opportunity to sustain life in the face of adversity, has helped many people deal with the grieving process. The ability to give someone, or perhaps many people, the #GiftOfLife. A chance to live on. It's the ultimate gift a person can give.
With so much at stake for our community, I don't think anybody underestimates the enormity of the task placed at the feet of the Committee. We're all looking to receive something tangible to support the efforts of so many advocates championing the cause of Organ Donation... We need solutions to this problem - Now!
Perhaps together, we'll be able to start running at the problems currently plaguing our Community. Resolving many if not all of the issues highlighted back in January.
My next thoughts, upon learning the follow-up meeting would take the form of a Gala, was naturally - as any self-respecting woman would think:
"OMG - What am I going to wear??!!!"
Composed, and now over my initial panic, I sought comfort in the knowledge I'd be able to reconnect with people who'd attended January's meeting. You see, over the past few months, I've been fortunate enough to have exchanged messages with so many positive, inspirational and encouraging people via Twitter, many of whom would be in attendance. Some, in a similar position to my own - waiting for a match. Others, having already had their transplant, successful or otherwise, sharing their stories. Encouraging others to remain positive and upbeat.
So many people (generally) have come out the other side, and are now living the lives they never thought possible. Many having spent years on dialysis.
Each story as unique as the person telling it, everyone with a common theme - hope, determination and a desire to help others. Motivation to keep moving forward.
Stories like Jay and Sina Patel, talking about their son Aari. They are heroes in my eyes for what they've done and continue to do for the cause.
I digress...
I'd be remiss if I didn't acknowledge those within the Twitter Community who - unfortunately - didn't find their heroes in time to be saved OR weren't suitable for a transplant because of their deteriorating health.
In my short time connecting and getting to know people's stories on Twitter, I was lucky enough to have been touched by one person in particular, I'd like to pay tribute to...
He went by the name @Sanddancer999 or Bah Humbug. For those of us who felt his words of comfort, warmth and encouragement, we knew him simply as Derek.
In my eyes, he was the dictionary definition of a kind-hearted warm soul, who took the time to raise the spirits of others, whilst having his own health issues to battle through - without complaining or seeking anything in return from other. I know I'm not alone when I say I feel he touched so many with his words...
This became evident to me upon reading the numerous comments left after his passing... Derek, unfortunately, lost his battle earlier this year.
Losing him so abruptly shocked many, even though he was about to receive treatment for his various illnesses, he still had kind words to share with me. What I loved most about him was his energy, he never displayed anything but an upbeat attitude. His outlook was always positive, he had a tender heart and shared his emotional warmth freely. He was fearless! I still go back and read his messages to this day.
Derek's passing strangely felt personal, I'd not met him in person and didn't know him outside of Twitter, but we had connected on a level. His challenges were my challenges, different and yet similar. His passing refocused my mind. What more can I do to change the status quo?
Derek, wherever you are, may you rest in peace, safe in the knowledge you helped so many people deal with so much. Never again will I underestimate the power of communication, whether it be others reaching out to me, or the next time I myself need support. I pledge to do what I can, not to ignore it when I see it.
Some photos from the night:
Dr. Onkar Sahota - Chair, London Assembly Health Committee
Dr. Onkar Sahota opening proceedings
My Thoughts Post Gala...
Thinking back to how I felt after the Gala, apart from feeling drained and weak after such a long day, I actually felt sad. So much so, I had to disappear for a few days to take stock - perhaps partly why it's taken me so long to be able to commit all of this to "paper". I guess I should qualify what I mean by sad...
I felt it was an excellent opportunity to network and exchange thoughts, future plans, tactics and best practice. A pooling of ideas as it were.
Stories of success, in a circle such as this, is what spurs people to keep going. Everybody in the room was of the same opinion, in many respects it was a case of 'preaching to the choir'. The message was clear, but it's the people outside the room who need to hear it and act on it.
Behind the glitz and glamour of the night was an important message:
Black and Asian people occupy the lowest percentage ethnically to donate in all capacities,
and 62% of Londoners waiting for an organ transplant are either Black or Asian.
We, the "woke" are essentially the army, fighting battles on different fronts. Fighting against ingrained views held by a large section of my own Community. The Black Community!
What I find ironic is the fact we're fighting against our own - for the good of Our Community!!! I often stop and wonder to myself, what is it these naysayers get out of spreading misinformation? Who does it benefit? I know it's not the BAME Community, I also know their actions are holding us back, I'd go further, it's killing us! When I say that I mean it in the strongest possible terms. What is in the heads of these people? It's not for the greater good - I know that much - and it's contributing to the needless death of so many of our people prematurely.
"My life is in the hands of others. I'm relying on the kindness and compassion of a stranger I've not met yet. My 'needle in a haystack', perhaps unwilling to be found as yet, perhaps unaware of my plight. But still I search, in the hope they will reveal themselves to me." - Naomi Adams |
What I still struggle to come to terms with is knowing there are those in my community who are so entrenched, they would rather say no and see my demise, rather than say yes and help.
I get that it's a personal choice and people need to make the decision on their own - but I'm seeing a lot of hypocrites saying one thing when it doesn't impact them, and another if they too were in need.
For those of you interested to read the report The London Assembly's Health Committee produced and published, here it is:
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!
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