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Sickle cell project launched in Brent

NEW SERVICE: Dr Ajit Shah of the Brent Clinical Commissioning Group, one of the experts involved in creating the new project, speaking at the launch event

A COMMUNITY care service dedicated to assisting people with sickle cell disorder (SCD) was launched in Brent, northwest London, to coincide with Sickle Cell Awareness Day on June 19.

Created by members of The Sickle Cell Society (SCS) and Brent Clinical Commissioning Group, the two organisations united to create awareness about Britain’s most prevalent blood disorder and discuss patient experiences.

Speaking to The Voice, John James, chief executive of SCS, said: “Sickle cell is this country’s biggest blood genetic disorder and it doesn’t get enough attention from government and stake holders and it’s quite clear that some of the services that are available for people with sickle cell are not as good as they should be.”

MISGUIDED

Brent has the highest population of SCD patients in the UK.

Dispelling the notion that sickle cell was exclusively a ‘black illness’, James explained that the misguided notion originally stemmed from stereotypes.

But he acknowledged that this was changing. “I think what has happened since the 1950s, 60s and 70s is that we have seen a change in the demographics of this country. There are more mixed race relationships, increased migration and so forth and that’s contributed to the rise in the number and mix of people with sickle cell.”

On the future goals of the organisation, James said that the next task was raising awareness of the failings of the present systems to policy makers and stakeholders.

He said: “You’ve heard patients talk eloquently about their experience of the services and uniformly it was quite clear that the experience was not as good as it should be. We want patients to work with us to help get that message across because patients matter.”

Also present at the event was Dr Lola Oni OBE, a specialist nurse consultant and service director at Brent Sickle Cell & thalassaemia centre.

Dr Oni told The Voice that more education needed to be available to allow individuals to make informed decisions, particularly in family planning.

She said: “There’s still a lot of stigma attached to sickle cell disease. A lot of sufferers keep it very secret, they don’t want people to know particularly in the African community because of the stigma. As a result of that some people don’t know who needs the support in their own community.”

CHALLENGE

She added that the biggest challenge to the progress of meeting the needs of sufferers was funding for research.

“You will find it very difficult to get funding to deal with conditions that people see as a ‘minority’ condition as far as they’re concerned. Research can influence the way in which we manage people but unless we get the funding to do the research it’s going to be difficult to find cures.

“Some research is going on but it’s just not enough

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