OSCAR and Sickle Cell Campaigning: Patients Organising for Better Care

Learning what the doctors had not explained

Neville Clare’s campaign began with the difficulty of understanding his own illness. Born in Jamaica and brought to England during childhood, he experienced recurring ill health before learning that he had a form of sickle cell disorder. His personal account describes emergency surgery at seventeen, followed by years in which the diagnosis and its implications were not properly explained to him. Becoming informed was therefore part of becoming able to speak for himself. He would make access to knowledge central to his work with other patients. ¹

Clare built his understanding through independent study, eventually gaining a master’s degree and a doctorate in community health education. His interests included the social and psychological dimensions of illness. He drew support from his parents, friends, patients, families and sympathetic health professionals. That combination of personal experience, learning and relationships would sustain a campaign concerned with how people were treated both inside and beyond the consulting room. ¹

An organisation led by patients

In 1975 Clare established the Organisation for Sickle Cell Anaemia Research, known as OSCAR. Black Cultural Archives preserves an early leaflet from its Wood Green branch, a small surviving trace of the effort to reach people who needed information and support. The organisation grew in a period when sickle cell services were poorly developed and patients faced racism and stigma. Its formation placed someone living with the condition at the centre of organised efforts to change those circumstances. ²

OSCAR’s reach extended beyond north London. Groups developed in places including Sandwell, Nottingham, Dudley, Bristol, Reading, Croydon and Leicester. Clare became a mentor to emerging local organisations, continuing that role until his death in 2015. These groups gave people somewhere to share experience and a means of approaching local services collectively. A leaflet, meeting or conversation could connect an isolated household to a wider body of knowledge, while giving local campaigners a name under which to organise. ²

Understanding the condition without reducing the person

Sickle cell disease is inherited and affects red blood cells. It can cause severe episodes of pain, tiredness and other serious complications, but its effects vary between people and over time. Carrying sickle cell trait is different from having the disease. These distinctions are essential to understanding why campaigners worked so hard to improve public knowledge: a shared name did not mean that everybody had the same symptoms, needs or experience. ³

Although sickle cell has particular significance in Black British history, it is not confined to people of African or Caribbean heritage. The NHS also identifies Mediterranean, Asian and Middle Eastern backgrounds among those with a greater likelihood of inheriting it. Its physical and emotional effects can make support from other people valuable. Campaigns rooted in Black communities could therefore address a condition affecting people across several backgrounds, while challenging the particular racism that Black patients encountered. ³

Birmingham: the work around the hospital bed

Ajay Dattani’s oral history for Black Cultural Archives describes OSCAR Birmingham’s early strength in the city’s Caribbean communities. He remembers organisers with connections to Jamaica, St Kitts and Barbados, working with very limited money. Fundraising walks brought people together, and the organisation became familiar even among residents who did not fully understand sickle cell. His account places collective effort, rather than substantial resources, at the heart of its early reputation. ⁴

Dattani also recalls workers and volunteers visiting people in hospital, bringing essentials and asking whether things were secure at home. The questions extended beyond the illness itself: had the patient left anything unattended, and was the house locked? Such details show what community support could mean during an unexpected admission. Someone in pain might also be worrying about ordinary responsibilities that had abruptly become difficult to manage. Dattani’s retrospective account cannot establish that every branch operated identically, but it records a form of assistance grounded in knowing people and recognising the practical disruption of illness. ⁴

Meeting other families

For Laurel Brumant, joining a support group changed her sense of what it meant to live with sickle cell. In her recorded testimony, she remembers nurse Elizabeth Anionwu speaking to her and her mother on a hospital ward. Until then, she had not known other people with the condition. The group introduced her to families whose experiences made her own life feel less isolated. Her mother also gained support, showing how the consequences of illness reached across a household. ⁵

Brumant remembers people sitting together, talking and explaining what they had experienced. Anionwu helped them discuss the services that existed and those that were missing. The meetings created room for knowledge that was difficult to gather during a hurried appointment. Families could compare experiences, ask questions and recognise needs they shared. This was part of the wider support-group movement surrounding sickle cell, rather than evidence that every such meeting belonged to OSCAR. Its importance lay in making patients and carers visible to one another as people with knowledge worth hearing. ⁵

A wider network of voluntary action

The Sickle Cell Society became a registered charity in 1979, bringing together people living with sickle cell, parents and health professionals. It was a separate organisation from OSCAR, although both belonged to the expanding field of voluntary action around the condition. The Society’s stated purpose linked better quality of life with the right to good care. It also recognised that improving professional knowledge required resources: awareness could not depend entirely on patients repeatedly explaining themselves. ⁶

Volunteers contributed administrative work and fundraising as well as public campaigning. This less visible labour helped sustain an organisation between prominent events. Administrative support and fundraising helped sustain research, educational projects and activities for children. The Society’s own account describes work alongside health professionals rather than a simple division between campaigners and clinicians. Patients could challenge poor treatment while building relationships with practitioners who shared their concern and could help change services. ⁶

Making decision-makers respond

Health professional Lola Oni remembers improvements as the outcome of sustained pressure. In her Black Cultural Archives interview, she describes patients making demands, practitioners gaining influence and public figures helping to draw attention to neglect. She names supporters including Trevor Phillips, Trevor McDonald and Bishop Wilfred Wood, alongside clinicians such as Sally Davies and Anionwu. Their contributions operated through different routes, from public visibility to influence within health services. ⁷

Oni’s account stresses that goodwill alone was insufficient. In her assessment, campaigners had to make inaction difficult for those responsible for policy and spending. Celebrity support could help an issue reach an audience, but patients’ demands gave the campaign its purpose. Her testimony also complicates any story in which services simply improved as medical knowledge advanced. Knowledge had to become a priority for people controlling resources. Organising connected the experience of a hospital ward with arguments about what institutions should fund, teach and provide. ⁷

Keeping support local

OSCAR Sandwell dates its work to 1988. Its stated purposes combine support for people and families, public understanding of sickle cell and thalassaemia, and the promotion of research. Maintaining this combination is significant. Publicity may bring a condition to wider attention, while an individual family still needs someone who can respond to its circumstances. A local organisation can work at both levels, making the general campaign meaningful through continuing contact with residents. ⁸

The organisation also identifies fundraising as part of its mission. That recognises a practical condition of community work: services require income as well as commitment. An association that survives for decades must keep making the case for its work to people who may never have experienced sickle cell themselves. Sandwell’s history extends the story beyond a founding moment in London, showing how a locally rooted organisation could carry related purposes into a different place and through successive generations. ⁸

OSCAR Birmingham describes its work through the health, social and economic circumstances of children, adults and families. Its listed activities include mentoring, befriending, counselling, advice, volunteering and training, alongside research and health promotion. This range reflects the many settings in which illness can affect a person’s life. Support may involve confidence, relationships and participation as well as understanding a diagnosis. The organisation’s stated approach places respect for the individual, their culture and preferences at the centre of that work. ⁹

It is also careful to include families and carers. That wider view recognises the relationships through which much support is provided. A child, an adult in employment and a parent caring for someone else may approach the same organisation with different questions. The variety of services offers a response to that difference. Local organisations could retain a shared commitment to sickle cell while developing their work around the needs of the people who used them. ⁹

Taking experience into schools

The need for better understanding extended into education. A research programme conducted between 2006 and 2011 by De Montfort, York and Loughborough universities gathered evidence from pupils, schools and local authorities in England. Its work included a survey of 569 young people living with sickle cell and interviews with forty. Respondents described being prevented from drinking water or using the toilet when needed, and being required to undertake unsuitable exercise. Some said tiredness had been dismissed as laziness. ¹⁰

The researchers also found that many local authorities lacked basic information about affected pupils. This was a study of particular participants and institutions, not a claim that every child experienced the same treatment. Nevertheless, it showed why access to a hospital specialist could not resolve every difficulty. Children spent much of their lives in classrooms, where ordinary rules and assumptions could overlook their condition. Listening to their accounts produced evidence of problems that broad statements of support for inclusion could easily miss. ¹⁰

Patients helping to shape research

OSCAR Sandwell later partnered with the Sickle Cell Society and De Montfort University in research on employment. Published in 2020, the project’s findings drew on interviews with forty-seven adults and discussions led by people living with sickle cell. Participants helped determine the questions and consider possible responses. The work included people in a wide range of occupations, challenging any assumption that living with the condition necessarily placed someone outside working life. ¹¹

The researchers reported discrimination, limited understanding of fluctuating illness and difficulties obtaining support. They also designed participation around the realities of sickle cell: people could contribute when their health and energy allowed, without being obliged to attend every stage. This was a practical way of sharing authority over research. Patients supplied more than examples for experts to interpret; they helped decide what needed investigation and how findings could be used. The resulting employment guide brought community knowledge into a form that workers and employers could discuss. ¹¹

Recognition within national services

National provision changed considerably over the decades. Newborn screening for sickle cell was fully introduced across England in 2006. A Public Health England review ten years later described how screening could identify affected babies early enough for prompt specialist attention. This represented a different starting point from Clare’s experience of living with illness for years without understanding its cause. The development concerned England specifically; it should not be treated as a single date for every health service in the United Kingdom. ¹²

The same review acknowledged the part played by patient organisations. The screening programme worked with the Sickle Cell Society and the UK Thalassaemia Society on public outreach and understanding families’ perspectives. Iyamide Thomas of the Sickle Cell Society described a family-focused film project that helped explain the conditions and screening. This placed community organisations within the delivery of public information. Their relationships and experience had a role alongside laboratory testing, professional standards and specialist treatment services. ¹²

The continuing demand to be heard

Progress did not end the need for campaigning. In November 2021 the All-Party Parliamentary Group on Sickle Cell and Thalassaemia and the Sickle Cell Society published No One’s Listening. Following the coroner’s report on Evan Nathan Smith’s death, the inquiry heard evidence from patients, clinicians and politicians and received more than a hundred written submissions. It identified poor care, inadequate training, failures of communication and the influence of racism on patients’ treatment. The report distinguished generally well-regarded specialist services from serious problems elsewhere, particularly emergency departments and general wards. ¹³

Its findings returned to a question that had driven earlier organising: would people living with sickle cell be believed when they explained what they needed? The report was an APPG publication, not a judgment or an official report approved by Parliament. Its force came from the evidence gathered and the demands it placed before institutions. Across this history, patients and families repeatedly turned private experience into collective testimony, making care a matter for public scrutiny and organised action. ¹³

Sources

[1] Dr Neville Clare. Neville Clare: life, education and campaigning.

[2] Black Cultural Archives. Challenging: sickle cell campaigning and the OSCAR leaflet.

[3] NHS. Sickle cell disease; Reviewed 22 September 2026.

[4] Black Cultural Archives. Ajay Dattani: oral-history transcript on OSCAR Birmingham.

[5] Black Cultural Archives. Laurel Brumant: oral-history transcript on support groups.

[6] Sickle Cell Society. About the Sickle Cell Society.

[7] Black Cultural Archives. Lola Oni: oral-history transcript on campaigning and policy.

[8] OSCAR Sandwell. Welcome and mission statement.

[9] OSCAR Birmingham. Who We Are: history, information and services.

[10] De Montfort University, University of York and Loughborough University. Education of Minority Ethnic Pupils: Young People with Sickle Cell Disease; Research conducted 2006–2011.

[11] De Montfort University, Sickle Cell Society and OSCAR Sandwell. Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder; 2020.

[12] Cathy Coppinger, Public Health England. We have helped thousands of babies during ten years of newborn screening for sickle cell disease; 1 September 2016.

[13] APPG on Sickle Cell and Thalassaemia and Sickle Cell Society. No One's Listening: An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care; November 2021.

Sources checked on 23 October 2026.