Attitudes Need to Change if Sickle Cell Patients are to get the Treatment they need Exposing the Failings, Offering the Solutions
- 1. Total Eco Management Ltd (TEM LTD), UK
CITATION
Gbangbola K (2024) Attitudes Need to Change if Sickle Cell Patients are to get the Treatment they need Exposing the Failings, Offering the Solutions. J Subst Abuse Alcohol 11(1): 1101.
INTRODUCTION
As we approach National Sickle Cell Awareness Month, Sickle Cell Disorder (SCD) remains a little understood life-threatening medical condition. In the global SHAPE study [1] nearly half of medical practitioners cited difficulties understanding the condition, due their patients having a different ethnic background from them, a third found sickle cell (SC) patients challenging to understand. Patients however want patient safety, knowledge and safeguarding from long term risks, organ damage, mental health, poor care, discriminatory behaviors, contaminated blood, etc.
If the above exposes the elephant in the room, it is exacerbated by poor funding levels, a lack of research, non- inclusion in trials, specialist media ignoring patient views etc. Sadly, healthcare commissioners have been doing the same; never taking action to level up. Indeed, Inquests are generating ‘Prevention of Future Death reports’, recording what people living with SC always knew, SC patients dying are because of poor basic care and/or neglect while in hospital; the findings on race and inequality make for uncomfortable reading. MPs were peaked, prompting the 2021 Parliamentary enquiry on sickle cell named, ‘No One’s Iistening’ [2-10].
Progressive voices in medicine know there must be a shift in focus to action, in addition to talking about it, if we are to overcome the findings of SWAY [3]; this global survey found 40% of sickle cell patients feel sufficient terror, that they stay away from hospitals and suffer at home, to avoid the trauma they experience in hospital settings, during their frequent ‘medical emergencies’ where they are in fear of their life, in excruciating pain, ill and vulnerable! Shockingly, during all this, they are confronted by open discrimination, delay, anxiety. These medical responses behaviours represent sustained and enduring ‘moral injury’, the impacts from which there is a duty to provide healing, but still no one’s listening!
communities, suffering disparity, poor schools, jobs, and sub-standard primary, secondary, and community care. With respect to licensed treatment availability the NHS supports 4 treatments for Sickle Cell Disorder [4], but a whopping 511 for Cystic Fibrosis (CF) [5], which predominantly affects white people. The disparity is massive, indeed over 440 times more money is spent on Cystic fibrosis than SC [6]. Though white people have sickle cell disorder and sickle cell trait (a carrier of the sickle cell gene has a degree of malarial protection), it predominantly affects people of African and Caribbean heritage. In the UK an estimated 17,500 individuals have SCD, 10,500 have CF.
Tedros Ghebreyesus, Director General of the WHO said, ‘the racial inequality black people suffer is still an issue, and the WHO stands in solidarity with all marginalised patients in communities not consulted, not engaged, or empowered in their own care’.
Britain recently experienced mass civil racial unrest, but it was heartening to see the public, of all ethnicities, join as one in solidarity and unity against racism. The eradication of structural and systemic discrimination in healthcare needs leaders that fight for change for all, so privilege is levelled out.
Sickle Cell Disorder (SCD) is an important area of medicine for many reasons, it is the world’s most common genetic blood condition. This genetic change inflicts regular hospitalisation in a ‘medical emergency’ where patients experience excruciating pain; at levels likened to childbirth or being repeatedly axed.
Normally red blood cells are flexible and round, moving easily through the blood vessels for 120 days. The cells of people living with SC last 20 days leading to fatigue, a lack of oxygen to bones, tissue, and organs, and ‘S’ polymerization; an array of interactions in blood where the red blood cells become rigid, sticky, and sickle, or crescent moon shaped [7].
Expert reviews of The Sickle Cell Guide [7] request medical professionals, patients, and anyone with an interest, to get the book and be touched by its magic. As a seminal text it is unrivalled for its provision of encyclopedic knowledge on sickle cell disorder, the prestigious Lancet Review commented. This is a book that tells the world something it needs to hear. A writer without SC, knows a fraction of an equivalent person that lives with SC.
Different sectors of business have been aware for decades of the importance of engaging, and involving stakeholders, after all, they have an important stake. The SHAPE study and a new report of testimonies of the patient experience attest, medicine ‘is not listening to the sickle cell community’, contributing to the rise in mental health issues, as sure as covid contributed to a rise in waiting lists.
Few if any organization’s working in SC are formulating plans and targets to address problems in health and social care, despite report after report highlighting disparity and poor healthcare being delivered to the black community; The Black report 1980, Acheson Report, Marmot 1, and Marmot 2, Race and Maternity reported death is 5 times more likely if black. Significantly 83% of practitioners agreed sickle cell causes financial difficulties for patients, housing difficulties, terrible health quality of life issues, from birth right through to death. Hospitals need to address the issues, creating a culture where discrimination is not tolerated.
But how can a service change when those providing it do not know, or understand itsservicesusers, or their experience of the services? This is where stakeholder engagement is key, and the maintenance of constant assessments, to mitigate and prevent risk, disclosing matters material to customer/citizen/ patient satisfaction.
A startling new report ‘What Sickle Cell and Black Patients Really Want’ provides a rapid review into patient experiences, and the handling of complaints of poor and substandard healthcare, policies and practice, discrimination, and abuse. It delivers extensive testimonies, solutions, and recommendations able to generate a paradigm shift in care, health outcomes, and socioeconomic status. The report provides evidence, facts, and data, direct from the mouths of patients. Considering SC is one of medicines most common yet least understood ecosystems, the world needs to hear these voices, hear their testimonies, patients experiencing discrimination, calling 999 (Emergency Services) for help from their hospital beds in fear of their life; circumstances in which other patients have died. Patients in a medical emergency refused an ambulance, patients in excruciating pain denied pain relief, complaints never addressed etc.
This startling report makes a series of 12 recommendations
calling for change, some of these include:
- The NHS should work in partnership with hospitals and other agencies to develop a shared understanding of the prevalence of discrimination and abuse, and promote effective whole NHS responses and safeguarding through policy, law, and compliance with existing clinical guidelines.
- Hospital leaders should reach out to patients being clear, discrimination will not be tolerated towards NHS SC
patients, and staff will be held to account. It is a human right, a breach of the Equalities Act, with breaches facing consequences of up to, and including gross misconduct.
- SC specialist centres shall develop robust complaints processes to ensure that complaints from sickle cell patients are dealt with in a timely manner.
- A Questionnaire for patient satisfaction feedback for services received. This would be a key tool to improve patient experience whilst clarifying the standards they should receive.
- Centers of Sickle Cell care should be levelled up to the high-quality care expected at centers of Cystic Fibrosis [11-15] including funding, staffing, management, support service, SC and culturally sensitive training at every level of staffing etc. The top 10 Sickle cell centers should be twinned with the 10 best performing cystic fibrosis centers cross fertilising staff and leaders.
The changes should be completed and sustainably embedded with a 2-year levelling up target, and Patients should be on the Board.
The report recommendations could help reduce the number of painful sickle cell crisis a patient has; saving the NHS millions, reduce the impacts of the condition on a child’s education, an adults employment, and socioeconomic status. Many SC patients live within our most deprived communities and need these supports across the cost-of-living crisis, where cold is one of several triggers for a SC episodic attack [7].
Patients would benefit from a program of support promoting knowledge and good health, reducing hospitalisation, and providing quality treatment, adult and child cures like the 2020 Nobel Prize winning CRISPR gene therapy [9]. Also incredible NIHR trials I am involved in, to manufacture blood, enabling higher quality, no rejection, higher stocks of blood for all those in need, including many sickle cell patients dependent on monthly blood transfusions and the people that give blood at www. blood.co.uk Investing to save would save the NHS billions.
REFERENCES
- Global Blood Therapeutics SHAPE (Sickle Cell Health Awareness, Perspectives and Experience) published by the European Haematology Association and GBT.
- No One’s Listening – An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care November 2021
- Osunkwo I, Andemariam B, Minniti CP, Inusa BPD, Rassi FE, Gibson BF, et al. Impact of SCD on patients daily lives, symptoms Reported, and diseases management strategies: Result from the international Sickle Cell World Assessment Survey(SWAY). Am J Hemat. 2020; 96: 404-417.
- Global Data (2020) ‘Sickle Cell Disease: Marketed Drugs’.
- Global Data (2020) ‘Cystic Fibrosis: Marketed Drugs’. August 31 2021.
- Lee L, Smith-Whitley K, Banks S, Puckrein G. Reducing Health Care Disparities in Sickle Cell Disease: A Review. Public Health rep. 2019; 134: 599-607
- The Sickle Cell Guide – The seminal text on Sickle Cell acclaimed in the prestigious Lancet Medical Journal as having encyclopaedic knowledge
- Elliott Parris. Lancet Medical Journal Review of ‘The Sickle Cell Guide’. 2023: e249
- Gene-editing therapy may blood disorder, BBC Online and TV body.
- Kye Gbangbola writing in the Guardian Newspaper; 200 years old, 1.8 million supporters, in 180 countries. Article about Sickle Cell and Parliamentary Sickle Cell Inquiry Report ‘No One’s Listening’. 2021
- Jana Witt, Sophie Lewis, Sarah Clarke. Cystic Fibrosis Trust, UK Cystic Fibrosis Service Resourcing: 2020-2022 (2023)
- NHS Could Save Billions and Improve Quality – Sustainability, Health, and new Mandatory Measurement and Reporting Requirements.
- Novartis Pharmaceuticals Government Affairs team – Sickle Cell Disease: Burden on Patients, the health system, and the Economy in the UK – page 5 The True Burden of Living with Sickle Cell March 2021 Job No 1030337
- Global Data. ‘Haemophilia: Marketed Drugs. 2020.
- Gene-editing therapy may blood disorder. BBC Online and TV.