Sickle Cell Society

Charity of the Month

About Sickle Cell Society

Sickle Cell Society is the only national charity in the UK which supports and represents people affected by Sickle Cell.

Set up as a registered charity in 1979, the Society 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.

Sickle Cell is particularly common in people of an African or Caribbean family background. People with Sickle Cell are born with a condition, as it can only be inherited from both parents each having passed on the gene for Sickle Cell.

They work with members of the Black community to raise awareness of the condition and to provide help and support to those living with the condition.

Their Challenges

Last year Sickle Cell’s Helpline received 696 calls and 1428 emails from people living with sickle cell asking for our help and support. We reached over 9500 people directly and over 66,000 indirectly via events and social media. In addition, over 997 people took part in online events run by the Sickle Cell Society in the last year. All those who access support are typically from an African or Caribbean background.
A lot of our work centres around children and young people and each year we also deliver a virtual children’s holiday, aimed at those living with, or affected by sickle cell. This is a vital service to helping connect families with each other for peer support. One area of our work includes collaborating with the NHS Sickle Cell and Thalassaemia screening programme to screen for Sickle Cell and this is an area we have been focusing on growing.
They also run programmes throughout London and 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 have recruited 328 new blood donors. The Society benefits from the support of a wide range of individuals and organisations nationally, who together play a vital role in its success. Without this, we would be unable to finance essential research and educational projects and we would be unable to offer children a much-needed holiday.

Their Achievements / Goals

On a political platform, the Society has continued working closely with the APPG – All-Party Parliamentary Group for Sickle Cell and Thalassaemia to raise awareness and prioritise sickle cell on the political platform. In 2021, the Society co- published the “No one’s Listening” report with the APPG group, based on the ground-breaking inquiry led by rt Hon Pat McFadden MP in Autumn 2021. The inquiry was to get 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 and sickle cell patients all too often receive sub-standard care. Its publication is an urgent call to action to various parts of our healthcare system and related entities to provide better care for those living with sickle-cell.

A significant number of people who live with sickle cell are of African and Caribbean heritage. We salute all of our sickle cell warriors past and present for aiming to make positive change and take action in their life to improve health and wellness. As a charity we continue to work hard every day to take action in order to make positive changes for the Sickle Cell community.

The Society benefits from the support of a wide range of individuals and organisations nationally, who together play a vital role in its success. Without this, we would be unable to finance the essential research and educational projects and we would be unable to offer children a much-needed holiday.

Sickle Cell Society's Social Channels

If you would like to make a donation, find out how to fundraise for us, or are interested in more information about the work of the Sickle Cell society, please visit our website for more info, or scan the QR Code below.

John James, CEO of the Sickle Cell Society said

“We are delighted to celebrate Black History Month, together with our many supporters and donors.”