30 Years of Caring

The Sickle Cell Society Celebrates a Milestone

Thirty years ago in a small, backroom in Brent, a group of patients, parents and health professionals gathered together to listen to and share experiences about the lack of understanding and poor treatment available for people with sickle cell disease in the UK. Thus began the birth of the Sickle Cell Society, the national charity whose mission is to enable and assist individuals with sickle cell disorder achieve their full economic and social potential. The Society does this by raising awareness through education, the provision of welfare services, advocacy and by assisting in research. As the Sickle Cell Society celebrates its 30th anniversary, it can look back with pride at some of what has been achieved over the years4

1979 Formation of the Sickle Cell Society by Ms. Elizabeth Anionwu, Mrs. Sherlene Rudder and Mrs. Millicent Simpson.

1981 The Sickle Cell Society donates £1,800 to Central Middlesex Hospital to purchase screening equipment.

1982 The Sickle Cell Society donates £5,000 to Willesden General Hospital for the purchase of a computer.

1985 The Society presents two ‘on-demand’ analgesia computer pumps to Central Middlesex Hospital London.

1988 The first respite holiday for children with sickle cell disorder started with a trip to Bognor Regis.

1993 The first national conference on sickle cell takes place at Aston University, Birmingham.

1996 The Society’s Ralma Faulkner Welfare Fund and its Bryon Jones Educational Fund are established.

1998 Launch of Brent Sickle Link and Lambeth Outreach Project – the Society’s support services for families affected by sickle cell disorder.

2001 Lobbying by the Society results in the formation of the NHS Sickle Cell and Thalassaemia Screening Programme on whose steering committee the Society subsequently gets representation.

2003 Cherie Blair makes a visit to the Society’s Harlesden Headquarters.

2004 Launch of the Society’s Regional Care Advisors’ Programme covering 5 regions in the UK.

2006 The Sickle Cell Society and key stakeholders including service users are hosted at 10 Downing Street by Mrs. Cherie Blair.

The World Health Organisation declares sickle-cell disease a global public health priority, the Society having been involved with the lobby.

The Society launches the first-ever Standards for the Clinical Care of Adults Living with Sickle Cell Disease in the UK, a unique collaboration involving the Society, NHS and Department of Health.

An All-Party Parliamentary Group (APPG) for Sickle Cell & Thalassaemia chaired by Diane Abbott (MP) is established.

The UN General Assembly in a resolution passed in December declares 19 June as the annual World Day for sickle cell & thalassaemia.

The first World Day for sickle cell and thalassaemia is celebrated. n

For information about sickle cell disease contact:
Sickle Cell Society, 54 Station Rd, London NW10 4UA
Tel: 020 8961 7795
Fax: 020 8961 8346
Email: [email protected]
Website: www.sicklecellsociety.org

Save the Date! Saturday, 12th December – Fund-raising Carol Service on behalf of the Sickle Cell Society. Details will soon be on our website.

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