“I’ll be really honest with you: I’m having trouble right now and am on morphine today to manage the pain.”
Chanel Taylor endured long hours during a sickle cell crisis, while explaining how the COVID-19 pandemic has seen a significant reduction in blood transfusion supplies.
The 36-year-old, who was diagnosed with the blood disorder at just nine months old, is one of several patients whose treatment has been pushed back on more than one occasion since the virus outbreak last year. She usually has a transfusion every five weeks, receiving seven units of ethnically matched blood each time.
The delay severely affected her quality of life and the overall shortfall in transfusion supplies across the UK is dramatically affecting the well-being of many others who live with sickle cell disease – a disease that is predominantly African. and affects people of Caribbean descent.
Ms Taylor, marketing co-ordinator and NHS donor, said: “I was due to have an exchange on 2 August, however I received a message saying that my treatment was canceled due to staff shortages due to the COVID-19 outbreak ” said the care administrator.
Anxiety and distress took her back to 2020, when the pandemic began and a critical blood transfusion was delayed for almost a month.
“Typically, up to two weeks before my transfusion, I usually conserve my energy and try to minimize and prioritize my time—be it work, not taking on too much, running school. So I was feeling tired, exhausted at the time,” the mother-in-law explained.
“When I was told about the delay, I was distracted and stress is also a trigger for sickle cell; It increases my distress pain and anxiety. The thought of me not having an exchange really scared me.
“I wasn’t able to stand and cook, my daughter’s parents the way I usually do, we had a lot of takeaways – so my Uber and Deliveroo bills were high in the month of August. The lack of exchange itself can create a crisis; I have experienced joint swelling, vascular necrosis and deep vein thrombosis.”
Following the recent postponement of her transfusion, Ms Taylor, who has lost vision in her left eye as a result of her condition, had to wait three weeks for a reallocated slot and, during that time, call to see. Had to do whether they had any were available.
“I remember thinking ‘How many more patients are going through this in London? he said.
As the founder of Unsicle My Cells, a campaign group aimed at promoting awareness, she was able to discover that other patients are facing similar delays.
“There is a lot of experience with sickle cell patients not being able to receive treatment because of the pandemic, but we also believe it has to do with the fact that it is one of the fastest growing genetic diseases in the UK. which has very few resources, so we should always be assertive, fight for support and behave relatively well.”
“The pandemic caused so many problems for sickle cell patients because it led to the withdrawal of treatments.
“Also, this disease alone is an epidemic and it has been for many years – so why is it not being addressed? When it comes to canceling appointments and treatment, you’ve heard stories like Nathan Evan Smith, patients being called drug seekers and liars, yet sickle cell nerds. We are in 2021 and we are still fighting for that.”
Despite guidance from NHS Blood and Transplant, many trusts are not prioritizing patients with hereditary blood disorders, including sickle cell disease. Granthshala Also heard from Global Blood Therapeutics (GBT), a biopharmaceutical company dedicated to the discovery, development and delivery of life-changing therapies that provide hope to underserved patient communities.
Its chief executive, Nigel Nichols, said: “There has been a lack of focus on sickle cell disease and this has resulted in a massive 24.7% drop in donations to blood banks which are a lifeline for some sickle cell patients.
“This is despite the National Blood Transfusion Service alerting the NHS on this issue. Even though black voices have been raised and many groups have been talking about it for years, here we are.
“I think this is a symptom of the lack of innovation and standards of care that have been trending in the treatment of sickle cell over time; COVID has exposed the inequality that exists in this area as it is, among many other things. “
Pointing to race-based discrimination as a factor with which the disease is treated, Mr Nicholls is calling for more “cohesive and broad engagement” with policy-makers and the media to raise awareness to that level. can be extended to where it is needed to be.
At present there are 12,633 black and mixed black blood donors which is only 1.5 per cent of the total donor base. About 16,000 new donors from black and mixed black communities are needed to meet demands
In addition, current blood shortages heavily affect sickle cell patients, who require regular blood transfusions to manage symptoms of the disease, without which they can experience severe and life-threatening complications, including stroke or multiple organ failure. The risk of complications increases.
“Sickle cell patients also face discrimination because it is an invisible disability and because we don’t feel like we need care,” Ms Taylor reflected.
“We have to pay for the medicine; This is a 24 hour, 365 day challenge. We have no warnings, no timeline for when we will have these complications. So trying to educate people is really hard, especially when we have to advocate for ourselves. “
Credit: www.independent.co.uk /