Screening for sickle cell and beta thalassaemia

Awareness/understanding about the conditions

Some people we talked to, especially those who had friends or family with sickle cell disorders or beta thalassaemia major, were very well-informed about the conditions. However, even people in this group reported some gaps in their knowledge. For example, a woman who herself had SC disorder said, “I didn't realise that there's actually a difference between sicklers. I didn't know there's SC [SC disorder] and SS [sickle cell anaemia] until I came to this country and I read more about it. In Nigeria all I knew was I just had sickle cell.” SC disorder is a type of sickle cell disorder which is distinct from sickle cell anaemia. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects. 

Within the UK, levels of awareness are quite high in some communities. 

A Christian mother suggested that the church could play an active role in raising awareness, and a Muslim mother had heard helpful information on Radio Ramadan.

Other people we talked to, including several people from white European backgrounds, said they knew little about the conditions before they were invited for screening. Most thought it would be helpful to have more public information explaining that white people could also be affected. 

Some people had arrived in the UK relatively recently, and described varying levels of awareness in their countries of origin which had influenced their own views. A number of people who had come from African countries said that sickle cell anaemia was widely known about, and one woman had been taught about it at school. However, several mentioned a general perception that few people with sickle cell disorders will live past their early twenties. For some people this was all they had heard about it before having screening, and they had not been aware that improvements in care have led to better quality of life and improved life expectancy for many people.

Of course it is still the case that people with sickle cell anaemia may die at a young age, especially if they are living somewhere without sufficient access to care and medication. But one mother said she felt sometimes parents in Africa did not seek medical help because they assumed the child would die young anyway, so it was important to raise awareness.

Levels of awareness about beta thalassaemia and haemoglobin E also varied considerably. One couple said in the area of Italy where they came from everybody knew about beta thalassaemia because so many people were affected. In contrast, a couple from Vietnam and a woman from Thailand said no-one they knew had ever heard of either beta thalassaemia or haemoglobin E. One woman who was herself well-informed about beta thalassaemia had found it difficult to organise carrier screening for her fiancé in Pakistan. 

Several people said they felt the level of general information and understanding about the conditions was improving steadily in the UK, even though there was more to be done. Better information is needed both for the general population, as well as for some health staff who do not routinely come across people affected by sickle cell disorders or beta thalassaemia major. The communications strategy and training programme set up by the National Screening Programme aims to tackle precisely this issue. The following is a quote from the Standards for the linked Antenatal and Newborn Screening Programme November 2006:

“All those directly involved in the provision of antenatal and newborn screening information or services should have an induction to the programme, and must undertake regular updating in line with continuing professional development guidance for their profession and guidance”

Several other people talked about the contribution people who themselves have the conditions can make in challenging stigma and raising awareness, both amongst friends and acquaintances and with organisations such as schools and local councils. 

See also:

'Living with sickle cell disorders'

'Living with beta thalassaemia major and intermedia'

'What kinds of information people want'

'Communicating the results'

Last reviewed September 2015.
Last updated August 2010.

 

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