01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Address: 54 Station Road, London, NW10 4UA
Email: john.james@sicklecellsociety.org
Telephone Number: 0208 961 7795

Website: www.sicklecellsociety.org
Registered Charity Number: 1046631

Prevalence of Sickle Cell: Sickle Cell disease is one of the most common genetic blood conditions in the UK. There are at least 15,000 people living with Sickle Cell disease and 380,000 people are carriers of the gene.

What is Sickle Cell Disease (SCD)?

In the UK, SCD is most commonly seen in people of African and Caribbean descent. To a lesser extent, people of Middle Eastern, Eastern Mediterranean and Asian origin are also affected and it is very rare in white Europeans.

SCD causes ‘sickling’ of red blood cells. Healthy red blood cells are round in shape and flexible allowing them to flow easily through blood vessels. Sickle cells on the other hand are typically rigid and sickle shaped, causing blockages in the body’s blood vessels. For people with sickle cell disease this manifests itself through regular Sickle cell crises – periods of extreme pain which often require emergency hospital admission, intravenous painkillers and blood transfusion.

There is no safe and effective cure for Sickle Cell Disease. Careful management of the condition can reduce its impact on day to day life but it remains extremely challenging to live with. The condition can cause chronic fatigue, strokes, tissue and organ damage and early mortality.

What support is available?

The Sickle Cell Society is a national charity with strong European and International links.

The society was established in 1979 and remains the only national charity in the UK that supports and represents people affected by SCD to improve their overall quality of life. We provide:

  • Information, advice and guidance
  • Advocacy in relation to education, health services, housing and employment
  • Development and capacity building of local peer-support networks
  • Awareness raising through seminars for patients and practitioners, public events, web and printed resources and social media
  • An annual children’s holiday
  • Training
  • Campaigning
  • Assistance into medical research
  • Policy development with stakeholders such as NICE, NHS England (specialised services), Public Health England (Sickle Cell and Thalassaemia screening programme) National Offender Management (Prisons) and with other voluntary organisations such as Genetic Alliance UK and The Specialised Healthcare Alliance

We are a certified member of the information standard, demonstrating our commitment to trustworthy health and care information and internal quality assurance processes. Resources are always developed in conjunction with a committee that includes patients/carers.

The Society is a user-led organisation. Currently, four board members have SCD or carry the sickle cell gene.

Information provided by the Sickle Cell Society, 17th March 2017

Breaking Down Barriers Project Overview

SCS aim to use the funding from this project to “contribute towards the salary of our Helpline and Information Officer, to support the provision of advice, information and signposting.” Their role will be to:

  • Translation – develop and produce their current resources in French and Portuguese. This will go through extensive review to maintain their Information Standards Certification.
  • Information and support – recruit someone who is able to speak French and Portuguese to provide support to different communities and help them to develop their understanding of the condition and the complex medical information.

Year 2 Project

The Breaking Down Barriers Advisory Group met in November 2017 to review the grant monitoring forms for year 1 projects and to consider the action plans submitted for year 2. Following successful completion of year 1, they were pleased to approve the plan submitted by the Sickle Cell Society to carry out the following work:

  • Contribute to the funding of the Helpline and BDB Project Officer
  • Explore barriers to accessing health services for people from BME communities
  • Continue to work with French and Portuguese speaking communities and further develop relationships with community groups
  • Develop accessible resources