I think we’re quite fortunate in the UK because we have integrated and well-structured systems in place to look after patients with sickle cell disease from childhood all the way through adulthood. We do have some improvements to be made, especially with regards to transition protocols where patients need to be transitioned safely from paediatric to adult services, but we do have a good system in the UK...
I think we’re quite fortunate in the UK because we have integrated and well-structured systems in place to look after patients with sickle cell disease from childhood all the way through adulthood. We do have some improvements to be made, especially with regards to transition protocols where patients need to be transitioned safely from paediatric to adult services, but we do have a good system in the UK.
I think also raising awareness is extremely important because throughout the past many, many decades, there are always efforts to increase awareness, but there are still too many healthcare professionals that are patient-facing and see children and adults with sickle cell disease that just don’t have enough knowledge about it and don’t know how to manage it safely. And I think ensuring that we continue to raise awareness about sickle cell disease, particularly for healthcare providers, will help reduce some of that potential stigma or discrimination that patients face in emergency departments particularly, would be important. And that’s still maybe an unmet need.
Other than that, in the UK, we do have very robust evidence-based clinical guidelines that help management of sickle cell disease patients. But as I mentioned, we do have emerging therapies and having more clinical guidelines and real-world data will help us understand which patients to select and what the outcomes expected would be. And this kind of information will help us when we talk to patients and their carers about their options available to them.
I think we also need more equitable access to clinical research because, for example, in our centre, we have a very active research portfolio, but I don’t think everybody in the UK has access to such clinical research. And I think it would be better if we were able to be more inclusive and have more equitable access to clinical research, because this is where the future lies.
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