DE MONTFORT University and the journal Ethnicity and Health will jointly host an international sickle cell social research conference from April 14-16 to mark the 100th anniversary since the first publication on sickle cell, called Peculiar Elongated Cells by Dr James Herrick in 1910.
This week The Voice looks at why it is so important to raise awareness of the disease.
Nigeria-born Nancy Segilola Scott is one of the UK’s 13,000 residents living with Sickle Cell Disease (SCD).
The inherited genetic blood condition, which often restricts blood flow to tissues and organs and can lead to major complications such as stroke and even death, often leaves Nancy with such crippling pain that she confessed that she once asked a doctor to chop her limbs off. Often her painful situation is worsened by a lack of awareness of her condition. In 2008 Nancy recalled going into a hospital where she was forced to fill in forms while being in the grip of excruciating pain and, while needing treatment on holiday in Somerset, a nurse actually asked her, “what is sickle cell?”
Nancy told The Voice last week that the pain is “still excruciating” but there has been positive changes regarding her treatment in health care settings since the government introduced standards in 2008 to provide guidance to health professionals on the minimum levels of care expected for every adult with SCD in the UK.
“Since the standards were published, I’ve found an improvement in hospitals,” Nancy, from Islington in London, said. “The last few times I was admitted, the doctors and nurses had been extremely attentive to my care and hadn’t felt the need to ask repetitive, frustrating and unintelligent questions. I was given treatment as soon as they established that I suffer from sickle cell anaemia.”
This is one reason why Anne Welsh, chair of the UK Sickle Cell Society has named the standards among major sickle cell care achievements in the past 100 years. Welsh said the standards have helped to change situations where some sickle cell patients were left waiting for long periods, with a few people even dying while waiting for the care of health professionals. Some professionals even believed “they were not really in pain but were making it up,” Welsh recalled.
“Now any individual who suffers from sickle cell and goes into hospital will be seen immediately by a doctor so that is a wonderful and major achievement [which is] making a difference in patient care.” Welsh also lists, as welcome developments, the establishment of the Nationwide Comprehensive Care For the Future programme and the All Party Parliamentary group, which is lobbying for official recognition of sickle cell anaemia as a disability and for more support for people with sickle cell.
“This group helps us lobby MPs so we have a voice there. They help us talk about sickle cell and raise awareness,” she said. Welsh said much has also been achieved in medical research and treatment such as pain management but “I think a lot more needs to be done.” Nancy agreed. “Though the standards have had a positive effect in hospitals, it has failed to reach other important areas,” she said.
Welsh supported Nancy’s view. “One of things I still find is the lack of awareness in the general population and high risk communities. There is still lack of awareness about sickle cell although it affects many in the UK’s black and Indian communities. A lot of people don’t know what sickle cell is or how it affects individuals,” she said. “Sickle cell is an invisible disease. It is not something you see so it is hard for people to understand what that individual is going through.”
Simon Dyson, sociology professor at De Montfort University (DMU) in Leicester, said the lack of awareness is why there needs to be more social research into the experiences of people with sickle cell. “There have been a number of important medical advances but there have been relatively little original research that looks at sickle cell from a social point of view,” explained Dyson, who is also director of the Unit for the Social Study of Thalassaemia and Sickle Cell at DMU. Dyson is organising this week’s sickle cell conference and has invited over 70 academics and professionals to share social research and experiences at this week’s conference.
Dyson said social research is necessary because sickle cell treatment has advanced so more people with SCD are now living beyond childhood. This means that the UK and other countries worldwide need to research and develop new and more sustainable ways of supporting people with SCD socially as well as medically.
He added: “There is going to be increasing numbers, both globally and within the UK, of young people with sickle cell and we want to research ways to understand the best ways of supporting them to live long and fruitful lives. “Sickle cell is now the most common single gene condition in England. One in every 2,300 births is a child with sickle cell disease. It’s becoming much more common,” Dyson said.
“In the next 100 years medical research needs to be complemented by a much stronger social research agenda so that we can begin to advance the cause of people with sickle cell disease not only in the United Kingdom and the United States but across the world,” he said. He said the world should also re-focus on how sickle cell affects the developing world particularly Africa, where most children with SCD are born and where many die from preventable deaths.
“There are huge disparities in the amount of resources that are allocated to the care and support of people with sickle cell disease in the developed world compared to continents like Africa and countries like India,” Dyson added. He said an estimated 300,000 children are born every year with sickle cell disease in Africa and in poor, rural areas, where there is often no screening and little treatment, as many as 95 per cent of affected children could die before their fifth birthday.
He said “social cures” such as boosting education and awareness and installing newborn screening and crisis prevention programmes have saved up to 95 per cent of these at risk children in countries such as Ghana. The greater use of such programmes in Africa could see the survival of as many as 250,000 children with sickle cell disease, living to adulthood and eventually going into employment, Dyson said. “It is for that reason that I think we need to start to undertake social scientific research particularly around things like education and employment.”
The need for such research also remains in the UK. Referring to his recent research into school children with SCD, Dyson said: “There are very simple preventative measures that could be undertaken such as allowing them to drink water so that they don’t go into one of their sickle cell painful crises and supporting them when they miss time off school. These simple things aren’t being done.”
Dyson, who also called for more people to get tested to see if they are one of an estimated 200,000 UK people carrying the sickle cell gene, said social research is important because it can document the experiences of people with SCD. Research could document “what’s going on for the benefit of policy makers so they can be assured that these things are really happening and really need to change.”
Such research would help organisations such as the Sickle Cell society overcome challenges such as inadequate access to pain management; lack of knowledge among some professionals and the difference in quality of service depending on what area an individual lives. “One thing I would like to see change is that sickle cell disease carries a lot of stigma,” Welsh said. “We need that to change. Sickle cell should be given as much priority as other long-term medical conditions.”
She added: “I want people with sickle cell to have access to pain management; I want there to be a good understanding among professionals – it could be a social worker; the nurses at work; the teachers at school; an employer. “I want everyone who comes in contact or is dealing with someone with sickle cell to understand what the disease is all about because the care would be managed much better if you understand.”
“There is still inequality of care so I want every person with sickle cell in the UK to receive the same standard of treatment. I don’t want to be in Bristol and get a different type of treatment than I would get in London. “It would also be a top priority if there could be more research and if they could come close to a cure for the disease because I believe there is not enough money being pumped into research and if someone could just pump more money into research, that would definitely help…”
Nancy, who has a supportive boss and family, said she and other people with SCD also need help with basics such as “If they’re unable to work to get benefits and get help with anything in terms of sorting out electricity bills especially during the winter. “It was so cold last winter that I got ill three times. It’s never happened before. We couldn’t afford to turn the heating on for 24 hours so it caused a few problems.” “Because of the nature of my work, I travel a lot and thus my health insurance is quite expensive – perhaps I could get a a discount?”
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