While there is gradual awareness about sickle cell within the population it most affects, there is growing concern that some medical professionals remain ill-prepared to meet their most urgent needs.
With the tragic death of two sickle cell patients making recent national news headlines, the National Health Service appears to have a case to answer with regard to how the disease is diagnosed, treated, monitored and addressed.
Evan Smith was going through a sickle cell episode so severe that he called the emergency services from his hospital bed in North Middlesex in April 2019. The findings of the inquest into his case read like a perfect storm of missed cues; breaks in communication; failure to acknowledge red flags and fundamentally a patient who was not listened to.
Richard Okorogheye’s mother Evidence Joel today in West London raising awareness of sickle cell disease for Richard’s foundation – encouraging people to give blood.#SickleCell #SickleCellAwarenessDay pic.twitter.com/jmz5ERsA2s
— Thomas Kingsley (@ThomasKingsley_) June 18, 2021
Similar short shrift was given to the parents of Richard Okorogheye who were told: “If you can’t find your son, how do you expect police officers to find your son for you?” when he was first reported missing. A callous response by any measure, was exacerbated by the lack of understanding and subsequent lack of urgency surrounding him being a sickle cell patient without access to treatment.
Britain’s first ever sickle cell nurse specialist and health equality pioneer, Dame Elizabeth Anionwu believes this needs to be addressed from the perspective of funding allocation and sickle cell deaths that pre-COVID-19 could have been avoided. “You [nurses] can’t be everything but you can signpost people, but you can’t signpost people if you’re in a bubble and you never connect with social services, or housing or whatever and vice versa; you can’t just be in the community, but you don’t know how the hospital operates etc…”
This push for a joined up multidisciplinary approach to treatment and monitoring of sickle cell is reiterated in the Sickle Cell Society’s most recent report on a study into Standards and Recommendations for Clinical Care. Guidance in the executive summary suggests (but is not limited to):
- General Practitioner (GP) and community nurses should be kept informed about patients on a regular basis.
- There should be community paediatric services to coordinate the community needs of the child and to liaise with Child and Adolescent Mental Health Services (CAMHS), local authority services and the voluntary sector where it is needed.
- Local authority services (including education and social services) should know about the specific needs of children with Sickle Cell Disease (SCD) and their families.
- Any child with a deterioration in cognitive functioning should be assessed by an educational psychologist or clinical/neuropsychologist.
- Age-appropriate mental health services should be aware of the specific emotional and learning needs of children with SCD and their families.
Whilst delighted with the progress that has been made with getting awareness of the illness higher on the NHS agenda than it used to be, Dame Elizabeth sites the above examples as the sad evidence that sickle cell has slipped off some people’s agenda.
She strongly believes lessons can be learned and best practice can be established by drawing parallels between how community activism influenced the medical treatment of patients at the sharp edge of the HIV/AIDS crisis in the 1980s and how to prevent avoidable deaths due to Sickle Cell Disease in present day – even before the COVID-19 pandemic placed crippling pressure on an already burdened NHS.
“There are so many similar issues with sickle cell disease in terms that it mainly affects the Black community and that causes stigma in itself. That causes prejudice; that causes health inequalities because if you compare it with the resources allocated to cystic fibrosis – an equally terrible illness – and haemophilia – an equally terrible illness…which one do you find is lesser resourced? Sickle Cell of course.” she scoffed.
But despite the grim picture painted by those statistics, Dame Elizabeth is pleased they exist because in her view what can be measured in black and white can command changes and improvements in legislation and policy. “If you keep banging on about health inequalities, well okay here’s a case study, what are you going to do about it? And it does work!”
World Sickle Cell Awareness Day is considered a day of raising awareness and is recognized on 19 June.
For more information on how to better understand the disease and how to contribute to raising awareness of Sickle Cell Disease visit here.
This article was written by Katrina Marshall.