The reality of living with an invisible condition. – Victoria Sanusi

Sickle cell isn’t a new condition, but people who have it told BuzzFeed News advances in medical treatment aren’t coming fast enough and are calling for more scientific research and greater investment to improve the quality of their lives.

The inherited blood disorder, which limits the way the red blood cells distribute oxygen around the body, can have a huge impact on the lives of those diagnosed: The health complications over time can be life-threatening and it comes with regular bouts of crippling pain (known as a sickle cell crisis), which means patients often spend a lot of time off work or in hospital.

It’s also considered an “invisible condition”, which leads to sickle cell being widely misunderstood. It affects black people more than any other ethnic group – a community that generally experiences poorer health outcomes because of inequality.

In 2013, an inquest found a failure to follow basic procedures contributed to the death of a young woman called Sarah Mulenga after she called the emergency services while having a sickle cell crisis. Two trainee paramedics refused to take the 21-year-old to hospital, her condition deteriorated, and she later died.

The high-profile case led to a number of changes for the better, but there is still a long way to go, those who have the condition say.

Kehinde Salami, 36, told BuzzFeed News that many new treatments were still not being made available on the NHS. “The care and treatment for sickle cell has gone a very long way in the last 15 years. However, there is a long way to go, especially as sickle cell medications currently [available] are not free on the NHS and there definitely needs to be more progress.”

He also said while Theresa May’s announcement that she’d be making organ donation opt-out was a “step in the right direction”, it would not benefit sickle cell patients on the whole as those who need transplants are the most extreme cases and he described needing one as “the last possible step before death”.

Salami continued: “There are many patients like myself who are in and out of hospital who are not in need of organ transplants at present and who then are also at risk of possible death as the treatment for the condition only involves reactive medication [including] pain medication and anti-inflammatories, which do not focus on curing the condition. This here and the limited treatment for the large population of sickle cell patients that fall in this category is where heavy investment is needed.

“Sorry for the essay, but I’m actually pissed off.”

Jenica Leah, from Birmingham, said more work was needed to improve understanding of the severity of the condition and how it affects people’s lives, including having to pay for prescriptions. In her case, she often has to make the journey to London for treatments that aren’t available close to home, which is another expense.

John James, chief executive of the Sickle Cell Society, said: “The Sickle Cell Society has been actively involved with clinicians undertaking peer reviews of all sickle cell services in England. This work has shown that improvements are being made. However, there is still a lot of work to be done to ensure that every patient living with sickle cell anaemia is getting the same high quality of care.”

James said there was also an urgent need for more psychology services to be made available for sickle cell patients across the country, as well as more awareness training for frontline staff to avoid “misinformed stereotypes such as labelling sickle cell patients as drug addicts”.

Too often the mental health aspect of having a long-term chronic condition is overlooked, he said. Addressing this, experts say, can improve a patient’s overall wellbeing.

In a statement, NHS England said: “Sickle cell disease can be an extremely debilitating, distressing condition and NHS England is currently reviewing the way specialist services are provided to ensure that patients receive the highest standards of care, treatment and support. Whilst specialist services are central to these improvements, it’s also important that each part of the NHS works with patients to improve ongoing care.”

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