General Updates | The work of the Sickle Cell Society: supporting patients and improving SCD research

So the Sickle Cell Society is a national charity that works to support people who live with sickle cell. And we’re unusual as a charity in that we do a range of things, and the range of things isn’t just campaigning or influencing policy for sickle cell, but we provide direct services and support to people who live with sickle cell and their families, which is really quite unusual for a charity of our size. And there’s lots of things that we are proud of, but looking forward, there are two important strategic goals of the organisation. 

And one of those is about research for sickle cell. So how we improve the research landscape for sickle cell healthcare practitioners and others. And so, for example, we’re just completing, and this is a first, we’re just completing some work with Genomics England and the James Lind Alliance for a priority-setting process to identify the top 10 priorities for research in sickle and genomics. Not sickle and anything else. There’s lots more, but just sickle and genomics. Why? Well, sickle is probably one of the oldest genetic conditions that exists, and Genomics England have done lots of work, but they’ve ignored until now, they’ve ignored the oldest genetic conditions. So we’re very pleased that that work is taking place. 

And secondly, broader than the genomics priority-setting work, we’re looking at ways with our academic and clinical colleagues in terms of how we can just strengthen research generally. And we’ll be working with organisations like the NIHR, Department of Health and Social Care to find ways to do that. So those are prospective things that we are looking at. 

But I guess in terms of some of the highlights and successes of the charity, you can look no further than the No One’s Listening report, which has enabled millions of, albeit short-term funding, millions of pounds going into seven pilot emergency bypass centres and also improvements to community services. The risk of the short-term funding, and this is where the charity has to apply that campaigning and leverage, is that the NHS is in a place where money is tight, reorganisation is taking place, and the huge risk is that the positivity of starting to make those changes might fall off a cliff edge. So those are positive things that have happened. We need to see them sustained. But that’s where the work of the charity is important in our lobbying and campaigning. It’s pointless in our view to have some of the beginnings of improvements for this condition, which, by the way, has been ignored for decades and decades. It’s pointless having improvements only to say, oh, well, we’ve got to stop now. We haven’t got money, so hopefully I’ve given you there a couple of good examples about what we’ve been able to achieve but also what primarily on the research front that we’re looking to do going forward.

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