A quick recap
In September, we discussed Sickle Cell Awareness month and the withdrawal of the new sickle cell drug, voxelotor.
What have we been up to?
October, which is Black History Month in the UK, has flown by, but we have been busy as the end of this project, funded by the NHS RHO, is fast approaching.
Throughout October and November, we dedicated our efforts to completing our analysis and to contributing to events highlighting sickle cell research and collaboration. We highlight our patient engagement survey which is now live and aims to gather insights on inequalities in sickle cell from people living with sickle cell or their caregivers. We discuss the Marmot report on structural racism and health inequalities, and highlight the new drafted strategy of the NHS RHO.
1. We need your input!
As part of our comparative research, we have developed a patient engagement survey to gather insights on the inequalities faced by people with sickle cell. The survey is open to adults with sickle cell or carers of individuals with sickle cell living in the UK. It is brief, consisting of just 10 questions, and takes approximately 10 minutes to complete. Participants who complete the survey will have the option to enter a prize draw to win a £50 voucher.
Experiences of people with sickle cell are key to this project, and we encourage you to participate or share the survey with others who may be eligible.
2. Annual Sickle Cell and Thalassaemia Conference (ASCAT)
Rutendo kicked off October by attending the ASCAT conference. She presented findings from our work on inequalities in research and funding related outputs in sickle cell compared with cystic fibrosis and haemophilia.
The conference showcased exciting progress in sickle cell research and there were key discussions around basic care, improving research in countries with limited resources and gene therapy, with a session including presentations given by patients.
3. Sickle Cell Alliance Launch
On Friday 25th October, Fred delivered a presentation on his sickle cell research at the launch event of the Sickle Cell Alliance at Imperial College London hosted by the Imperial Sickle Cell Group and Imperial Enterprise. The alliance seeks to build collaborative partnerships on sickle cell across faculties, institutions, and industries while informing national policy.
4. Racism exacerbates health inequalities
The Marmot Report on structural racism, ethnicity and health inequalities in London
conducted by University College London’s Institute of Health Equity and led by Professor Sir Michael Marmot was published this Autumn. The report found widespread racism in London and highlighted that racism leads to damage to physical and mental health over time. One of the report’s conclusions was that there is potential for more systematic action to tackle racism within organisations and services, in recruitment, employment practices and in service design and delivery.
5. NHS RHO 2024-2027 strategic ambitions
The NHS Race & Health Observatory held an event on Friday 8th November to launch their new strategic ambitions to reduce health inequalities in the UK. This event brought together a diverse audience and offered opportunities to comment on the 7 drafted ambitions of the NHS RHO. You can find more about these here.
Want to contact us?
If you have any questions about this work, feel free to email Rutendo or Fred, or to post a comment.