For meaningful and impactful change, we need more unity
I fear that sickle cell charities in the U.K. are too disjointed to be effective
The sickle cell community needs unity if we are ever going to see change.
A few weeks back, I came across someone trying to start a charity for sickle cell patients. Ordinarily, you would think that as a sickle cell patient, I would find this heartwarming. But I had the opposite reaction.
Over the past five years here in the U.K., I’ve heard of a new sickle cell charity springing up seemingly every few months. Off the top of my head, I can name more than a dozen charities aimed at sickle cell patients. From personal experience, I don’t feel a personal connection to any of them, nor have I felt supported by them.
I believe this disconnection has prompted new charities to pop up. But we need to be honest: What has improved for us collectively with the number of charities we currently have?
The root of the problem
To effect real, positive, and long-lasting change, we need to be strong in numbers and unified in our mandate. We need to have clear and measurable objectives about what change is needed for patients, and what that looks like. I don’t believe it can happen with several disjointed and fragmented small charities.
Over the years, I’ve signed petition after petition from various sickle cell organizations, yet nothing that I know of has come of any of them. I think this is partly due to how disjointed and disorganized we appear as a community. How can government officials take so many disconnected charities seriously?
While sickle cell disease is unique and affects each person differently in many ways, our general stories are pretty much the same. If you speak with any sickle cell patient, no matter their age or ethnic background, you’ll hear similar stories of clinical maltreatment in their care experiences. You’ll learn of patients being forced to endure unimaginable pain because clinical staff believe patients are exaggerating. You’ll hear of cultural stigmas that make the life of a sickle cell patient seem unworthy or less than others. I could go on.
The daily fight that we sickle cell patients undertake isn’t easy. It’s much harder than it needs to be. Effective mobilization and organized advocacy could significantly improve our quality of life if we were united.
What is the solution, and how do we get there?
There is strength in numbers, and we need to collectively mobilize in an organized fashion. In an ideal world, I’d like to see all of the current charities in the U.K. merge into a single force under common leadership with clear objectives of change, and with teams that specialize in different ares of need; a cradle-to-the-grave approach toward patient support and advocacy.
We need a single charity that represents sickle cell patients of varying sickle genotypes, of all age groups, across the country. A charity that seeks to influence healthcare policy to the betterment of patient quality of life. A charity that seeks to educate and raise awareness of the illness among both clinical and nonclinical audiences. A charity that provides adequate support for school and workplace interventions where needed. A charity that supports parents of children with sickle cell. A charity that offers financial advice and assistance, spaces to explore and build hobbies, peer-to-peer support groups, mentorship, and retirement clubs. A charity that is a single-source safe space for sickle cell patients.
If we look at other long-term illness charities in the U.K., they have a single-voice approach, and as such, are able to garner significant fundraising support and be effective in influencing healthcare policy to the advantage of their patient group.
I understand that this is a tough conversation. It requires focusing on areas of development, which is always tricky. However, this difficult conversation, followed by effective strategy and meaningful action, is vital if we ever hope to see fairness and equality in treatment and quality of life for sickle patients.
This approach also will hopefully allow us to better help our community globally.
We must mobilize in a meaningful way, be strategic in our decision making, and see ourselves as a whole community, not the subgroups that we currently are.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Sharrel Howard
This is very true. Im in the U.S and both my family and friends have told me to start a movement or write a book. Honestly, I do feel as if those cries for help or just acknowledge, at the least, falls on deaf ears. I have personally made a huge life changing difference and I see the benefits and I try to share my experiences,but I get the feeling that there is no essential initiative to do something about it. Also it is some of us, like me, that just try not to characterize our life as a SCD patient because of everything it comes with. I do feel like our experiences, and some organization would definitely make a difference.