Remembering Windrush: Honouring the Legacy and Advocating for Sickle Cell Disorder
As we commemorate the anniversary of the Windrush generation's arrival in the UK, it is crucial to take some time for reflection. On 22 June 2023 marks 75 years since the first arrival of HMT Empire Windrush, which carried hundreds of Caribbean people to Britain. Their arrival was pivotal in enabling the UK to build back to a strong post war economy.
This significant milestone not only prompts us all to consider the challenges endured by these pioneers, but also serves as a catalyst to advocate for those who gave so much, but yet continue to face barriers today. In this post we’ll look at health impacts for this generation of people, in the area of Sickle Cell Disorder, and our work at the Sickle Cell Society UK to advocate for a better quality of life for individuals living with the disease.
The Windrush Legacy
The ‘Windrush generation’, was named after the ship that brought the first large group of Caribbean immigrants to the UK in 1948, and subsequent groups of Caribbean people arriving in the UK until the 1970s. This was at the invitation of the British government, who needed willing workers to fill a serious labour shortage, and provide the fledgling NHS with nursing and other staff.
These individuals made substantial contributions to various sectors, including healthcare, education, and public services. They enriched the cultural fabric of the nation, leaving an indelible mark on British society. We at the Sickle Cell Society are proud of their contribution.
The Disproportionate Impact of Sickle Cell Disease
Sickle Cell Disorder is a global condition. Millions of people across the world, in different populations are affected. It is, however, particularly common in people of an African or Caribbean family background . It is a genetic blood disorder that has a significant impact on the lives of those affected.
The main symptoms of Sickle Cell Disorder are anaemia and episodes of severe pain, known as sickle cell crisis, caused by a change in the shape of red blood cells, which carry oxygen around the body.
The pain occurs when the blood cells change to a ‘sickle’ shape and stick together after oxygen has been released, causing blockages in the small blood vessels.
People with Sickle Cell also have an increased risk of serious health issues such as acute chest syndrome, stroke, blindness and brain damage and can experience damage to major organs like the liver, kidney, lungs, heart and spleen. Complications of the disorder can also be fatal .
Many individuals from the Windrush generation and subsequent generations carry the sickle cell trait (sometimes called carrier status) or live with the disease. Despite these people being the crucial factor in developing many of the organisations and institutions we rely on, they have faced challenges in accessing appropriate healthcare, education, and employment opportunities, leading to a disproportionate impact on their quality of life.
Campaigning for Change
The Sickle Cell Society UK is the only national charity in the UK which supports and represents people affected by Sickle Cell disorder.
The Society was set up and the end of the ‘Windrush generation’, in 1979, and was formed by a group of patients, parents and health professionals who were all concerned about the lack of understanding and the inadequacy of treatment for people living with Sickle Cell Disorders .
Our work through the years has supported the Windrush generation to navigate the challenges presented by the condition and campaign for improvements. Today our work also supports descendants of the Windrush generation, who are living with the condition or carry the trait.
The only possible cure for Sickle Cell Disorder is a bone marrow transplant, but suitable donors are limited and difficult to find, and as a result, much of the charity’s work focusses on prevention and ongoing treatment.
We are proud that it was the Sickle Cell Society UK who campaigned successfully, in collaboration with health care professionals, to secure a new NHS policy for funding of adult bone marrow and stem cell transplants. Prior to that milestone of success, the NHS would only fund bone marrow and stem cell transplants for children with a sibling donor .
We work tirelessly to raise awareness, improve care, and fight for equal opportunities. The commemoration of Windrush serves as a poignant reminder of the ongoing struggles faced by the those affected by sickle cell in the Caribbean community, and is inspiring renewed efforts to address these challenges.
Our work falls into these areas:
1. Education and Awareness:
We actively raise awareness about Sickle Cell Disorder, dispelling myths, and educating communities, healthcare professionals, and policymakers. We conduct campaigns, workshops, and events to promote understanding and reduce the stigma surrounding the condition. We run a 5 day a week helpline service to provide one to one support to those who ask for our help. We have also developed 231 online engagement resources to help the sickle cell community, available on our website sicklecellsociety.org
2. Access to Healthcare:
Ensuring equitable access to quality healthcare services is a crucial aspect of Sickle Cell Disorder advocacy. We work collaboratively with healthcare providers and policymakers to improve diagnostic capabilities, expand treatment options, and enhance support services for affected individuals and their families.
One area of our work includes collaborating with the NHS Sickle Cell and Thalassaemia screening programme to screen for Sickle Cell. We also collaborate with NHS England, all the NHS Sickle Cell Centres across the country, NHS Blood and Transplant and other stakeholders who can influence better services and health outcomes for people living with sickle cell disorder.
We run programmes throughout London and the rest of the UK to help recruit blood donors, particularly donors from the black community, and partner with local gyms to help achieve this. In the last year we recruited 328 new blood donors and we work hard through our Give Blood Spread Love campaign to promote this message and increase donating amongst black heritage communities.
3. Empowerment and Support:
We provide invaluable support networks for individuals living with Sickle Cell Disorder. Our peer support service offers emotional support, shares resources and information, and empowers individuals to actively manage their condition and navigate the challenges they may face. It has been hugely successful in terms of its engagement with young people and parents, clinicians and commissioners.
4. Policy and Legislative Change:
We engage in campaigning to influence policy and legislative changes that directly impact the lives of individuals with Sickle Cell Disease. We work closely with policymakers to address gaps in healthcare provision, promote research funding, and advocate for inclusive policies that support equal opportunities in education and employment.
We work closely with the APPG - All-Party Parliamentary Group for Sickle Cell and Thalassaemia - to raise awareness and prioritise Sickle Cell Disorder on the political platform.
In 2021, the Society co- published the "No one’s Listening" report with this group. The report was based an inquiry which aimed to gain a nationwide picture of sickle cell care in the UK following the coroner’s report into the tragic death of Evan Nathan Smith in North Middlesex hospital.
The inquest found that Evan’s death would not have happened were it not for failures in the care he received. The inquiry found serious care failings in acute services for sickle cell and evidence of healthcare workers' attitude largely underpinned by racism. The report highlights that high-profile cases of failings like these are sadly not isolated incidents. Its publication is an urgent call to action to provide better care for those living with sickle cell.
Commemorating Windrush: A Call to Action
As we commemorate the Windrush anniversary, there is space for remembrance, but also for remedy: by working towards a better quality of life for people who left their home and everything they knew, to support the life we live today.
We can honour the legacy of the Windrush generation, ensuring that their contributions are celebrated, and the needs of those in that community who are affected by Sickle Cell Disease are acknowledged and met.
Our thanks go to Imperial NHS Trust who work to increase public understanding, and raise awareness of the condition to make a difference in the lives of those affected.