As part of our new series of blog posts with partners we’re delighted to welcome John James from Sickle Cell Society. June 19th – World Sickle Cell Awareness Day – is an important event in the calendar for the many millions of people globally affected by this condition. For visitors to HealthUnlocked who have been affected by Sickle Cell Disease the SCS HealthUnlocked Community provides support and information from a wide range of people who have experiences to share.
Matt Jameson Evans from HealthUnlocked asked John a few questions:
MJE: John, can you introduce yourself to the HealthUnlocked community?
JJ: My name is John James and I’m the Chief Executive Officer of the UK Sickle Cell Society. I joined the organization six months ago after a long career in health services management, operating at CEO level and also the civil service. I have commissioned new sickle cell services during my health service career.
The Sickle Cell Society is the only national organization in the United Kingdom that supports people with sickle cell. We offer a range of services including providing information and counseling to individuals with sickle cell and their families. We also offer an annual children’s holiday and we have a small welfare fund to help those who are finding it difficult to buy essentials to cope with sickle cell. And finally we have links with local support groups across the whole country. We also have links with a range of statutory, voluntary and private sector partners.
We work for one purpose and one purpose only and that is to improve the services available to people with sickle cell and their families.
MJE: If the rest of the population knew more about Sickle Cell Disease (SCD) how could that improve things for people with the condition?
JJ: Sickle cell is over 100 years old as a recognized condition. One thing that would happen if more people knew about it would be raised awareness about the common complications – some are very serious. They include strokes, anemia, infections, and damaged kidneys and eyes.
I make a distinction between awareness and education. It’s one thing to raise awareness but it’s another thing to educate people about what sickle cell means and what patients typically experience.
For the Sickle Cell Society increased awareness would help us raise much-needed funds. For example, even though sickle cell is more common than conditions like cystic fibrosis, we have less attention and fewer funds to support people with the condition. So we need to improve this.
MJE: What has the SCS got planned for Sickle Cell Awareness Day this year?
JJ: We have done a press release and joint campaign work with the NHS Blood & Transplant Organization aiming to raise awareness because we would like for people to donate blood. We also organized an open day for a few hours at our office inviting people to come by and engage with us directly about what having sickle cell means and what can be done about it.
MJE: Can you briefly explain the impact of a diagnosis of Sickle Cell Disease and what Sickle Cell trait means.
JJ: Sickle cell is a genetic blood disorder and although it’s been around for 100 years there is no cure for it. The word sickle, which is our logo, is the shape of the red blood cell, the sickle shape.
The ‘trait’ is that you can carry just the gene. The implications are that, depending on whether your partner carries the gene, there’s a chance that your children may have sickle cell as well.
In simple terms it’s an incurable genetic blood disorder commonly among people of African descent but not exclusively. And it’s the United Kingdom’s most common genetic disorder and also one of the top globally.
MJE: You hear a fair amount in the news about how medical professionals sometimes misjudge treatment of Sickle Cell Disease – is this a big problem?
JJ: Yes it is a big problem. Why? Let me illustrate with a recent inquest regarding an incident with a young woman in her early 20s with sickle cell. The London ambulance services were called out and sadly she died before she reached the hospital. Though this wasn’t the direct reason for her death, the inquest revealed that the paramedics were unaware how to treat an individual with sickle cell. This illustrates the need for professionals to be educated and trained because of how many people there are in the UK with sickle cell.
MJE: If there was one thing you would want everyone to know about SCD what would it be?
JJ: That’s a challenging question because of course I would prefer that people knew a lot more than just one thing. But if it was just one thing I’d want them to know that even though we’ve been aware of SCD for 100 years we still don’t have a cure.
How have you found having a HealthUnlocked community?
JJ: I have to say that HealthUnlocked has been welcoming as an online community and the dialogue has also been supportive: “how can we help you, what we do with your community”. We found you all helpful – as an example, this idea to start the blog to raise awareness about conditions like sickle cell – it goes to the heart of some of what we are doing.
MJE: Thanks, good luck with awareness day today, and we hope the Sickle Cell Community on HealthUnlocked continues to go from strength to strength.
– Matt Jameson Evans, Co-Founder & Chief Medical Officer