{"id":10,"date":"2025-01-23T12:31:10","date_gmt":"2025-01-23T12:31:10","guid":{"rendered":"https:\/\/micro.green-park.co.uk\/bre\/?page_id=10"},"modified":"2026-08-27T16:53:17","modified_gmt":"2026-08-27T15:53:17","slug":"about-us","status":"publish","type":"page","link":"https:\/\/micro.green-park.co.uk\/sicklecellsociety\/about-us\/","title":{"rendered":"About us"},"content":{"rendered":"\n
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Overview<\/h3>\n

The Society operates on a \u00a31.1 million budget with a team of\u00a0 sixteen staff. Income has grown steadily over the last five years, establishing strong organisational momentum. A significant proportion of this income comes from voluntary fundraising contributions, including donations and legacies.<\/p>\n

The charity has also achieved notable public affairs successes. A key example is persuading NHS England to fund pilots for emergency department bypass units in seven parts of the country. These units have greatly improved the care of people living with the condition when experiencing a sickle cell crisis.<\/p>\n

The next Chief Executive will take over at a pivotal moment. The Society is negotiating with funders to develop its first-ever scientific research programme. At the same time, commissioning of sickle cell services is moving to Integrated Care Boards (ICBs). Local commissioners have historically under-prioritised rare diseases and the Society is determined that the gains made from the sickle cell improvement programme are not lost as ICBs take on this role.<\/p>\n

Our Work<\/h3>\n

Key recent highlights of the charity\u2019s work include:<\/p>\n

    \n
  • Individual donations income grew\u00a0 by 60% compared to FY 24-25<\/li>\n
  • We received \u00a399,436 in income from corporate supporters, while also pursuing new funding\u00a0 applications for core and restricted projects and investing in relationships to sustain service delivery<\/li>\n
  • Our helpline received 327 calls and responded to 614 emails<\/li>\n
  • We had 85,000 users from 146 countries.<\/li>\n<\/ul>\n

    Helpline and Information Service<\/h3>\n

    Our advice line remains a vital source of support for people living with sickle cell and their families. The team respond to a wide range of enquiries covering health, education, social care, housing, welfare benefits, and more. The most common queries are around sickle cell treatments, research, requests for our resources, financial matters, donations, and requests for the charity to attend exhibitions and send speakers to events.<\/p>\n

    We also offer guidance to professionals in schools, healthcare settings, and other organisations seeking to better support individuals with sickle cell. The strength of our advice service lies in the depth of knowledge and lived experience held across our staff team, supported by input from our panel of expert medical advisers and trusted partners. This collective expertise not only informs the advice line, but also underpins our online resources, face-to-face community engagement, and consultancy work with larger organisations.<\/p>\n

    Our advice team continues to be active in the community, regularly attending events, hosting stalls, and sharing accessible information. These in-person opportunities are invaluable for connecting directly with people affected by sickle cell, gathering feedback, and helping shape how we deliver support\u2014ensuring that our services remain responsive to the real-world needs of those we serve.<\/p>\n

    Sickle Cell and Thalassaemia Screening Programme<\/h3>\n

    In October 2024, we began the second year of our collaboration with the UK Thalassaemia Society (UKTS), working in partnership with the NHS Sickle Cell and Thalassaemia Screening Programme. This project continues to ensure that the screening pathway is shaped by service user needs and focused on tackling health inequalities.<\/p>\n

    Family Retreat<\/h3>\n

    The Family Retreat brings together families from across the country that have at least one child living with sickle cell. The retreat has seen overwhelming demand, with more than 100 families applying for under 30 places. Families are prioritised based on need, enabling us to include several vulnerable households, including some new to the UK or affected by housing insecurity.<\/p>\n

    The retreat offers a rich mix of activities designed to support the whole family\u2014building confidence, improving understanding of sickle cell, and encouraging new friendships. The programme includes high-energy activities like abseiling and ziplining, along with wellbeing workshops, sibling support sessions, and dedicated sickle cell education for children and parents. Separate sessions are also held for parents, siblings, and young people, ensuring tailored support across the group.<\/p>\n

    Children and Young People Peer Mentoring<\/h3>\n

    Our Children and Young People’s Peer Mentoring Programme continues to provide essential, structured support for young people living with sickle cell. This year saw significant growth in reach and impact, with over 300 referrals in the London area \u2014a clear reflection of rising demand for peer-led, condition-specific mentoring.<\/p>\n

    To meet this need, we have successfully expanded our mentor pool, improving our capacity to match mentees more quickly and provide timely, high-quality support. Feedback from participants shows encouraging outcomes, including improved confidence, emotional resilience, and overall wellbeing. ITV News have covered the work of the programme.<\/p>\n

    Our Future Focus sessions are designed to support mentees as they go through key transitions, such as entering university, apprenticeships, and life beyond school. They offer practical guidance and broaden the scope of support we provide. Despite increased pressure on services, the programme has continued to deliver powerful, life-changing outcomes. Looking ahead, we aim to grow our mentor recruitment and training offer, strengthen transitions for young people completing the programme, and further embed Patient and Public Involvement and Engagement (PPIE)\u2014ensuring that young voices are not only heard but shape the future of sickle cell support services. We are focused on expanding the scheme into Liverpool, Manchester, and Sheffield, extending our reach to young people with sickle cell across the North West and South Yorkshire.<\/p>\n

    Transplantation<\/h3>\n

    Working with NHS Blood and Transplant, our Give Blood, Spread Love, England programme is increasing blood donation in Black and Brown communities \u2014 an important lifeline for people with sickle cell who rely on regular transfusions. These communities are more likely to have the \u2018RO\u2019 blood genotype, which better matches the needs of sickle cell patients and helps reduce serious complications from transfusions.<\/p>\n

    Public Affairs and Communications<\/h3>\n

    The Society seeks to influence public policy towards the provision of health services for people living with sickle cell. We have also done policy research on the impact of social security benefit changes, like the planned reforms to Personal Independence Payments. We support the work of the All Party Group on Sickle Cell and Thalassemia. A key APPG report was \u2018No One\u2019s Listening\u2019 in 2021. This report highlighted the failings in health services for people living with sickle cell.\u00a0 The report prompted action from NHS England to establish seven emergency department bypass units to ensure that people experiencing a sickle cell crisis received access to pain relief within the 30-minute target time set out by the national clinical guidelines for sickle cell.<\/p>\n

    In 2024, the Society organised a large-scale representation to the Medicine and Health Care Products Regulatory Agency (MHRA) in support of funding the newly licensed gene therapy treatment Casgevy. This was instrumental in securing the funding for the use of this therapy. Additionally, in 2026, the Society mobilised parliamentary supporters in order to ensure that funding was sustained for the sickle cell bypass units. We secured a select committee inquiry into bypass units where the Society\u2019s chief executive gave evidence.<\/p>\n

    Our Strategy<\/h3>\n

    The Society has prepared a corporate strategy for the next phase of our work. The key themes are as follows:<\/p>\n

    Influencing Health Policy and National Standards*.We will continue to ensure that the needs and experiences of people living with sickle cell inform national policy and healthcare standards. Key activities may include:<\/p>\n