Sickle Cell Treatment

Marsha De Cordova Excerpts

Wednesday 8th December 2021 Westminster Hall

[Mr McFadden]

I quite agree with my hon. Friend, and our report goes into many recommendations that could improve care. Indeed, it is a call to action; it is a call to arms. Following Evan’s death, the deaths of others and the many near misses involving sickle cell patients, we wanted the report to set out the changes that are needed to stop this story from repeating itself over and over again.

Sickle cell affects about 15,000 people in the UK, with many more carrying a trait. Patients with the condition experience periodic crises—bouts of intense, severe pain that sometimes require hospitalisation. The crises are treated with strong pain relief, and sometimes blood transfusions, and over time they can result in organ damage, an increased risk of stroke, other associated conditions and even early death. It is therefore common among sickle cell patients to have to go to hospital regularly, to present at A&E and to be admitted on to wards. This is an important point. For sickle cell patients, contact with the healthcare system or admission to hospital is not a one-off; it is a lifelong part of living with the condition.

To prepare our report, we took evidence in three oral evidence sessions in June this year. We heard from patients, clinicians and policy makers. We heard from Evan Smith’s parents, Betty and Charles, who spoke with so much dignity about the loss of their son and their determination to make sure that other families do not have to go through what they have been through. We received over 100 written submissions and, taken together, this is the most comprehensive report on sickle cell care that the APPG has ever produced.

[Marsha De Cordova (Battersea) (Lab)]

I congratulate my right hon. Friend on his leadership on and commitment to this issue. The report that his APPG has produced has shone a light on some of the challenges faced by people living with sickle cell—whether it is around some of the negative attitudes, the lack of awareness and understanding, or, most importantly, patient care. Does he agree that tackling this issue and the multiple health inequalities that exist will require significant investment and resource from the Government, and an acknowledgement of the structural racism that exists within the health setting?

[Mr McFadden]

My hon. Friend makes some very strong points, and I will discuss some of them, including the question of race.

Since the report’s publication, I have continued to receive emails from sickle cell patients all around the country that confirm the report’s findings, and I want to put on the record my gratitude to each and every person who has taken the trouble to write to me, whether it was just after the report was published or in advance of today’s debate.

Let me set out the main findings of the report for the House. Let us begin with a positive: we found a good level of trust among sickle cell patients in the specialist haematology departments of hospitals that look after them on a long-term basis. We found clinicians passionately committed to better treatment and honest enough to tell us when that good treatment was not there. We found that where there is a good level of understanding and knowledge, sickle cell patients are generally well treated and well looked after, but we also found a huge gulf between the good level of confidence and trust in the specialist parts of the system, and treatment in the more generalised parts of the system—specifically A&E and general wards.

Our key findings include the unacceptable variability of treatment, depending on where someone lives or who happens to be on duty at the time; patients having to battle for the pain relief to which they are entitled; and protocols on pain relief—for example, that it be administered within 30 minutes of arrival—being regularly and repeatedly ignored or not being implemented. Witnesses told us of waiting for hours in excruciating pain. Some clinicians spoke of adherence to the pain relief guidelines within their hospital being as low as just 20% or 30%. There is a lack of compliance with care plans that have been agreed for individual patients, including with the hospital where a patient has turned up, and people have been told, “That doesn’t apply here.”

We found a dangerous lack of communication between the general and specialist parts of the system. In Evan Smith’s case, he had been in the hospital for over two days before the haematology unit even knew he had been admitted. That finding was described as “shocking” by one haematologist who gave evidence to the group. Such delays can contribute to mistakes, with the most terrible consequences. As well as deaths, we heard about a number of near misses where care had gone badly wrong and the patient had still survived.

There is a lack of awareness of the condition and a lack of understanding about how to respond to a sickle cell crisis among some NHS staff. Everyone in the healthcare system knows the key symptoms of a heart attack or a stroke, and how to respond to them. With sickle cell, however, the patient experience is often one of being caught in a perpetual loop of trying to teach staff about what is happening to them and what treatment they need, often at the time that they are experiencing excruciating pain.