A quick recap
Last month, we discussed our efforts in patient engagement and key events that we attended including during World Sickle Cell Day where we shared our research.
What have we been up to this month?
This month, we provide an update on our research, discuss a sickle cell awareness event Rutendo attended, and we highlight the national blood shortage.
1. Research Update
We have been working closely with statistician Professor Alex Bottle who has been providing his expertise in analysing NHS hospital data to explore inequalities in hospital outcomes (including hospitalisations and length of hospital stay) in sickle cell compared to cystic fibrosis and haemophilia. We continue to progress with our literature review summarising existing evidence on inequalities and our work exploring specific indicators of inequality (including research funding) in sickle cell compared to these other conditions. We have started writing these up for publications in scientific journals and will work with patient representatives to produce abstracts in lay terms. Ultimately, all our work will be summarised in a report for the NHS RHO, and in a set of recommendations.
2. Engagement with patients, healthcare professionals and the public
Rutendo attended an event at The Africa Centre hosted by the Sickle Cell Society which focused on raising awareness about sickle cell and the importance of blood donations. There were great discussions among the panellists (including a patient representative and healthcare professionals) and the audience on tackling myths about sickle cell. The conversation covered a wide range of topics ranging from the use of language to blood donations.
3. National blood shortage
Although this is not directly part of our work, blood transfusions are an important intervention in people with sickle cell. Fred is a regular blood donor. It is a small gift that can save lives.
Blood stocks are currently unprecedentedly low. Due to a recent cyber-attack on London hospitals and a high number of unfilled appointments, blood supplies have dropped significantly. The NHS Blood and Transplant has issued an ‘amber alert’ and is urgently asking O negative and O positive donors to give blood.
You can book an appointment online, on the GiveBloodNHS app or call 0300 123 23 23.
4. Stay hydrated in the Heatwave
Finally, staying well hydrated is essential to prevent pain crisis and other complications in sickle cell. As we are experiencing some hot days, please remember to drink plenty of water throughout the day!!!
Rutendo and Fred wish you a great summer! See you next month.