Sickle Cell Treatment

Kate Osamor Excerpts

Wednesday 8th December 2021 Westminster Hall

[Kate Osamor (Edmonton) (Lab/Co-op)]

Thank you for calling me to speak, Mrs Miller. It is a pleasure to serve under your chairmanship, although “chairship” is a better word. I thank my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) for securing this important debate and for setting out a strong argument.

First, our thoughts must be with Evan Smith, who tragically died at North Middlesex hospital in my constituency. Owing to a determination to prevent further tragically avoidable deaths, the sickle cell and thalassaemia all-party parliamentary group must be given huge credit for putting together the hugely important “No One’s Listening” report on the failures in sickle cell care, and for producing an extensive and thought-through list of recommendations.

It has clearly been found that although the details of Evan’s case are particularly distressing, this is not just an individual failing of one hospital but the reflection of widespread shortcomings in care and a lack of institutional knowledge, which have led those with sickle cell to be fearful of receiving secondary care and of attending hospitals. Indeed, North Middlesex hospital is situated in an area with a large black population and, compared with the average hospital, it should have been adept at caring for sickle cell patients. Evidence of the dismissal of the pain of sickle cell patients sadly tallied with what has been highlighted by other studies of the disparities regarding the treatment of black people by healthcare staff, such as by Five X More, which has done work on black maternal health.

I wholeheartedly endorse the recommendations made in the all-party group’s report, and I want to highlight a number of those recommendations. First, the North London Partners integrated care system, within which my constituency and North Middlesex hospital fall, should develop a concrete plan to improve sickle cell care and share lessons learned from across the country. North Middlesex hospital should also engage with Betty and Charles, the parents of Evan Smith, regarding an appropriate memorial for their son.

I urge the Government to tackle the report’s recommendations with the seriousness that they deserve. Knowledge of sickle cell among healthcare professionals must be improved by mandating that universities should provide training in sickle cell as part of the curriculum, and healthcare in England should develop a mandatory e-learning module for staff treating sickle cell patients in high-prevalence areas.

The standard of care must be improved by developing individualised care plans for sickle cell patients, with copies passed to the patients and all their carers. NHS trusts should develop action plans to ensure compliance with the clinical guidelines to deliver pain relief to sickle cell patients within half an hour.

Finally, the NHS Race and Health Observatory should undertake a study of sickle cell care, examining how racism affects the experiences of patients, and the prioritisation that sickle cell patients are given compared with those experiencing other conditions. While sickle cell patient advisory groups are flourishing, they should be given the resources they need to have an oversight of sickle cell services across all hospitals. There is a lot of work to be done, but the way forward has been set.

I want to add that North Middlesex hospital has a unit for people who have sickle cell, so what happened to Evan should not have happened. The A&E experience for all patients who have sickle cell needs to be looked at with urgency. Thank you for listening.

--- Later in debate ---

[Maria Caulfield]

The hon. Member makes a good point. Most patients are probably young, of working age, and have to pay for their prescriptions, but around 89% of all community prescriptions are not paid for—they are free at the moment—and for those with long-term conditions, such as sickle cell, there are the prepayment certificates covering prescriptions for around £2 per week, no matter how many items they have to order. If, say, someone needed three items, that gives a saving of around £228 per year. I know that that does not give free prescriptions, but it is an existing system that patients are often not told about, and it can offer huge savings. I am happy to discuss that with the hon. Member after this debate.

I want to reassure colleagues that a huge amount is being done by the Department to improve the treatment of sickle cell patients. Clear and positive work is under way. It is quite new and innovative, and we hope it will make a difference in a very short space of time. There are still gaps in the provision of services.

[Kate Osamor]

I thank the Minister for the update that she has just given us, but she has not said anything about the bottleneck in A&E. Patients arrive and they are not listened to and not believed. What work will the Government do on that area of hospital treatment?

[Maria Caulfield]

The hon. Member makes an excellent point. There are NICE guidelines on sickle cell, so I will ask departmental colleagues to look at how often they are not followed. The issue was raised about analgesia not being given within half an hour of someone presenting. That is in NICE guidance, and the guideline should be followed in A&E or other areas where patients are admitted. I am happy to look at the prevalence of that not happening and why not. Again, I think that a lot of it is not deliberate. Much of it is to do with the education of staff, who might be in busy A&E departments with lots of people in pain, and they might not realise the impact on a sickle cell patient who does not get analgesia in a timely manner.