Marking World Sickle Cell Day, the Chair of the Sickle Cell Society explains how people affected by the disorder can share their views on NHS England’s planned changes to specialised care:

Sickle Cell Disorder is the UK and the world’s most common life-threatening genetic blood disorder that affects both babies and adults.

The United Nations recognised its huge significance and impact in 2008 by creating World Sickle Cell Awareness Day. Its purpose is to urge governments and health care practitioners to raise awareness of this major health issue that causes suffering to patients and their families, and needs more funding and research.

The reality for many affected by Sickle Cell is a lifetime of pain of a type likened to child birth or being repeatedly axed. These debilitating events are known as a crisis; leading to many being hospitalised repeatedly, often for weeks at a time. Children miss school, adults miss work and daily life can be frustrating, eroding the resilience needed to live in modern society. The condition can cause chronic fatigue, and repeated crises lead to incremental damage to vital organs, muscles and bones, contributing to co-morbidities and early mortality.

In the UK around 15,000 people have sickle cell disorder (SCD), a further 380,000 people are carriers of the gene. Although Sickle Cell is largely thought of as affecting mainly people of Afro Caribbean heritage, it affects other ethnicities including those of Mediterranean, South American, Asian, and Middle Eastern backgrounds.

For decades, populations have become more diverse enabling a demographic shift so that some with the condition are now blue eyed and blonde. The NHS Sickle Cell and Thalessaemia Screening Programme confirms 1:450 new born white babies are carriers of the gene.

At The Sickle Cell Society, the UK’s only national sickle cell charity, our role includes improving policy and practice in the service and care of people with Sickle Cell Disorder. We deliver community based projects to patients, carers and their families, work with the NHS to improve standards of care, and manage the national screening programme. We work with public and private organisations to support research, improve skills, knowledge and health care service delivery. We also engage with government and administer the Sickle Cell and Thalessaemia All Party Parliamentary Group.

As Chair of the Society; with a team inspired to create a better future for patients and families, we won the GSK/Kings Fund Award for helping to improve people’s health and well being. I am proud of how we work with others to campaign for and achieve quality SCD care.

This year we published the 2nd edition of a national set of standards of care for people living with sickle cell disorder which consulted leading sickle cell healthcare professionals and sickle cell patients and aims to ensure that people with the disorder receive the same high level of care regardless of where they live.

On World Sickle Cell Day, I am acutely conscious of patient surveys saying health care services do not work for them. We are called to acknowledge and respond to the global disparity in awareness, equality, and treatments. In sub-Saharan Africa, where the majority of people with SCD are born, levels of infant mortality remain high and people often struggle to access timely and appropriate care.

In the UK we face different challenges, to design and develop services resourced to consistently deliver quality care comparable to other high prevalence conditions. However, we have a great opportunity to try to address these in an NHS Haemoglobinopathies Service Review which is currently underway. Details of engagement events can be found on the Society’s website www.sicklecellsociety.org

The Haemoglobinopathy Service Review – ‘haemoglobinopathy’ refers to inherited abnormalities in red blood cells – includes plans to:

• Introduce ‘Haemoglobinopathy Coordinating Centres’ which will be responsible for clinical leadership and education.
• Develop a ‘National Haemoglobinopathy Panel’ who will accept referrals about difficult clinical cases and, in time, consider which individuals would benefit most from new treatments, and
• Change how the existing Haemoglobinopathy Register works to improve the benefits to patients and clinicians; the register collects details of people with sickle cell and other red blood cell disorders to monitor and learn from their treatments.

You can find the full details of NHS England’s proposals here and I would encourage all patients, carers, medical professionals to read through this information and consider the changes, including how they may impact you, and complete our online survey.

You can also take part in our online and face to face discussions, which will be attended by NHS England representatives, to ensure your views are heard.

It’s so important that we as people affected by sickle cell disorder keep building upon the improvements we have achieved and take advantage of the opportunities to shape the clinical services that deliver our care. The opportunity to voice our opinions on the planned changes should not be missed.

• To find out more about Sickle Cell Disorder and the Sickle Cell Society go to sicklecellsociety.org where you will find information, videos, blogs, a newsletter, membership details and events.