Dr Sentamu chaired the NHS Sickle Cell and Thalassaemia Screening Programme from 2001 to November 2013.
Sickle cell disease and thalassaemia major affect haemoglobin, a part of the blood that carries oxygen around the body. People who have these conditions will need specialist care throughout their lives. All pregnant women in England are offered a blood test to find out if they carry a gene for thalassaemia, and those at high risk of being a sickle cell carrier are also offered a test for sickle cell. If the mother is found to be a carrier, screening is also offered to the father.
Dr Alison Streetly explains why the role of the Archbishop was so important and celebrates the impact of his unflagging commitment over 13 years...
We realised early on that a prominent lay chair would be invaluable in establishing the programme within the NHS and creating confidence in the public. We faced challenges on every front. Firstly, we were the first national genetic screening programme in the NHS. What did genetic screening involve? What choices would arise? We needed to explain that – including some novel concepts – such as genetic carriers and that men might be invited to have an antenatal screening test!
Then there was a huge issue that sickle cell and thalassaemia were poorly understood by both professionals and the public. They are more widespread amongst black and minority ethnic populations and there was also huge misunderstanding and stigma.
And, within the NHS, there was some resistance to the programme and many practical issues in implementing it. There was also a big issue with care. From the start, the Archbishop championed the principle that it is only ethical to deliver screening if affected people can then access quality services. At the time care was extremely patchy and uneven.
The Archbishop was uniquely placed to help us tackle these challenges. Having grown up in Africa he had personal understanding of sickle cell and its impact. He also knew how stigma and misunderstanding can act as barriers for people. He was respected as a man of influence and moral integrity.
He launched himself into chairing with gusto and a dogged determination to cut through technicalities and practical difficulties and get things done. From the start he recognised the importance of reaching out to the public and involving the voluntary sector. We set up a highly innovative public outreach programme which had service users and the voluntary sector at its heart.
As chair, the Archbishop excelled in bringing people together from diverse backgrounds, professional specialties and interests. He focused minds on what needed doing and was fearless in holding people to account. Where the programme struggled, he would engage at the highest political and medical levels to resolve problems. At the same time, he was personally supportive of individuals – sometimes junior people and particularly service users.
Screening has made a huge impact in improving the detection of the conditions, giving people informed choices in pregnancy, and also in driving improvements in the quality of care which has resulted in extended life expectancy.
The screening programme was pioneering in many ways, not least in having John Sentamu as a high profile lay chair. He was uniquely equipped for the role. A man of influence from the populations most affected by the conditions, he had moral authority as a religious leader, disciplined thinking from his legal training and, above all, an ebullient, can-do sustained commitment.Dr Allison Streetly OBE, director of the screening programme (2003-2013)
The Sickle Cell Society supports and represents people affected by sickle cell disease to improve their overall quality of life.
Thalassaemia is one of a group of genetic blood disorders referred to as haemoglopinopathies. These disorders, mainly comprising different types of thalassaemia and sickle cell anaemia, are among the most common hereditary diseases worldwide: around 7% of the global population carry an abnormal haemoglobin gene, and more than half a million affected children are born each year. Find out more about this at the UK Thalassaemia Society