It's time to prioritise Sickle Cell patients
As we mark World Sickle Cell Day, I pay tribute to the resilience and strength that people with Sickle Cell display every day. I also want to thank the Sickle Cell Society and patient groups for the continuing support they give to people living with Sickle Cell.
Many of these patients, however, still suffer hostility and ignorance, especially when they are going through a crisis. My aim as Chair of the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia is to ensure that the recommendations from the No One’s Listening Report are implemented in full.
The findings in this report published in 2021 reveal a pattern of years of sub-standard care, stigmatisation and lack of prioritisation.
My main concerns are that many people are discriminated against and are not seen as a priority when they come to A&E with a Sickle Cell crisis. This has all led to patient deaths over many years with ‘near misses’ becoming commonplace.
Furthermore, despite Sickle Cell being the fastest-growing genetic blood condition in the UK it still receives less funding for research programmes compared to other similar conditions.
Slowly but surely progress is being made. I've had positive meetings with associated health services in which we discussed the need to improve the practical training nurses receive in relation to Sickle Cell.
I've also met with the Government on what Hospital Trusts should be doing to meet the 30-minute NICE pain relief requirement and to ensure that Sickle Cell patients are quickly triaged when presenting at A&E. The responses were positive, and I am keen to engage more with the Government on this.
More generally I'm pleased that treatments are becoming more available to patients. I've also been following updates on the development of bone marrow and stem cell transplant options for people with Sickle Cell. It is encouraging that the NHS has developed and is rolling out new patient cards, which should prioritise their treatment of patients when they present themselves at A&E.
Nevertheless, much more work needs to be done. Sickle Cell patients deserve free prescriptions. There is also an urgent need for more people of black heritage to come forward to donate blood to treat Sickle Cell patients following a soaring shortage in donations.
We are far away from where we can be, but as Chair of the Sickle Cell and Thalassemia APPG I will work tirelessly until the recommendations from the No One’s Listening Report are implemented.
Janet Daby is the Labour MP for Lewisham East and Parliamentary Under-Secretary of State (Minister for Children and Families) at the Department for Education.
