Photo Credit: Simon McKenzie, Street Levels Media
On Thursday 24th October 2024, I had the privilege to attend Black History Month Screening of Sickle The Docufilm at Ritzy in Brixton, London. The documentary was produced by Black Haringey Thrive in partnership with the Red Cell Network, which is part of UCL Hospitals NHS Foundation Trust.
Invited by Charlie Buckle, one of the real life Sickle Cell patient featuring in the documentary, I was eager to find out more about Sickle Cell Disorder and hear her story. How did she thrive beyond Sickle? How could one help other patients in the community do so?
Trailer of Sickle The Docufilm
I was not the only one eager to find out more. The “sold out” Premiere Screening of the film the month before in North London already was evidence that the wider public was ready to listen. Perhaps the 2024 hit Netflix show "Supacell", about a group of black South Londoners with superpowers triggered by sickle cell anaemia, has something to do with it.
Nonetheless, Charlie explained to me in our interview that Supacell is not an accurate representation of the disorder and patients' stories. On the otherhand, the Docufilm Sickle raises public awareness and educates viewers about Sickle Cell disorder based on science and experience, not fiction, with a clear call to action. For instance, after the first screening, Charlie had a very direct and personal win. She recalled how her friends and loved ones decided to become blood donors, check their blood type and keep each other in check in a WhatsApp group. They also planned to organise a blood donation after-party to celebrate supporting Charlie’s cause. All of this happened as a result of watching "Sickle".
It doesn't take away though the fact that Charlie Buckle, also known on social media as @ThatBlackVeganChick, is an amazing ambassador for the cause. She is continually raising awareness, engaging our community and advocating for a holistic lifestyle to improve the lives of those with Sickle Cell disorder.
On the left, Charlie Buckle @ThatBlackVeganChick with myself.
So what really is Sickle Cell disorder?
According to the Sickle Cell Society, a UK national charity representing and supporting people affected by a Sickle Cell disorder, “it is the disorder of the haemoglobin in the red blood.”
Normally, red blood cells are disc-shaped and flexible so they can move easily through the blood vessels to carry oxygen to the body. In sickle cell disorder, red blood cells are misshaped, typically crescent- or “sickle”-shaped due to a genetic mutation. As a result, the red blood cells can stick to each other and the blood vessel wall, causing blockages.
Sickle cell genes are inherited from parents who have a Sickle Cell Trait (one sickle cell gene and one normal haemoglobin gene). An individual with Sickle cell trait, whilst being a carrier, does not have the disorder. However, if two parents have a Sickle Cell Trait and pass the gene to their child, the child will be born with Sickle Cell disorder.
Sickle Cell Disorder currently impacts 15,000 people in the UK, mostly of African and Caribbean descents. As for the symptoms, the Docufilm shows how painful and traumatic Sickle Cell crisis are. Acute pain may require strong painkillers such as morphine. They can also be many peripheral consequences to Sickle Cell Disorder such as damage to internal organs.
Is there a cure?
The only current possible cure for the disorder is bone marrow and stem cell transplants if a suitable donor can be found but very few can access this cure. Hence, treatment of Sickle Cell Disorder mostly focuses on preventing and treating complications.
One most widely known treatment is blood transfusion which has two goals and is especially crucial when a Sickle Cell crisis occurs. The transfusion corrects the amount of the low oxygen-carrying capacity caused by severe anaemia and it also decreases the proportion of sickle red cells blocking blood vessels. Blood, from donors of the same ethnicity as the patient, provides the best treatment.
For instance, during the Q&A, a lady with Sickle Cell Disorder explained how she can no longer have transfusions. That's because the blood she was receiving from white donors was not a good match and so, over time, she produced antibodies interfering with transfusions.
According to NHS Blood and Transplant paper titled “Black heritage donors giving blood in record numbers, 12 June 2023”, Black donors are also 10 times more likely than white donors to have a blood type known as Ro, needed to treat sickle cell disorder.
Nonetheless, treatment and prevention do not have to be confined to clinical means explained Charlie. The disorder also has a huge impact on the patient’s psychology and lifestyle.
In the film, we find out that Charlie was told that she wouldn't live passed 25 years old.
How can one visualise a future? Dare to dream? Envisage long term goals such as building a family? Yet, today, she is an expectant mother who resolved to live and thrive.
Changing her diet was key to changing her mindset “as nutrition has a direct impact on the mind” she revealed. Better nutrition provided her with a clearer focus, improved her mood and increased her energy level. However, she added “it upsets me that our treatment plan is very similar to oncology patients. However, oncology patients are given a dietician and a nutritionist to attend to them but we don't have that”.
In truth, the disparity of resources for Sickle Cell Disorder is quite alarming and shocking. Moving forward, this Docufilm should also be a wake-up call for Public Health Institutions and call them to action. Improving care experience for Sickle patients should be given as much priority and emphasis as calling upon the Afro-Caribbean community to donate blood.
The paper “No One's listening” is an inquiry into the avoidable deaths and failures of care for Sickle Cell patients in secondary care by the All-Party Parliamentary Group Sickle Cell and Thalassaemia. It explores why Sickle Cell in secondary care is sub-standard and not a priority, on both general wards and in A&E. There are failings in providing joined-up sickle cell care and inadequate training among healthcare professionals to name but a few.
The tragic loss of Evan Nathan Smith in April 2019 sadly illustrates the lack of competent and dedicated staff to treat Sickle Cell patients. As reported by the Guardian newspaper, Evan died after being denied oxygen. "If medical staff had recognised his symptoms and treated him sooner, he would have lived" a coroner concluded at the time.
This feeling is still echoed by patients in 2024. Steph George, a real life patient also featured in The Docufilm Sickle, explained during the Q&A that NHS Sickle cell training only equates to one hour yearly and in some instance is not even mandatory. She also highlights the importance of attitudes changing within the NHS and that listening to patients and accountability are paramount.
Sarah Babalola, Give blood Spread Love, Steph George speaking, Charlie Buckle and Anton Forde, Black Thrive Haringey on the right
Photo Credit: Simon McKenzie, Street Levels Media
So this Docufilm is undoubtedly a step in the right direction and shows the viewer why and how to support family, friends and the wider community affected by Sickle Cell Disorder. It is within the reach of both the NHS and the community to ensure that many more patients live fuller lives and thrive beyond Sickle Cell therefore this conversation must go on.
After congratulating Sickle Warriors on stage, including her sister moved to tears, Steph George's sister added “We didn't have a say in being born like this but to see this conversation happening and people wanting to hear what we have to say is amazing”.
I couldn't agree more. The Docufilm Sickle is a win and I celebrate what it has the potential to achieve for all Sickle Warriors defying the odds day by day.
To check future screenings near you, click the link below.
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