Sickle Cell Treatment

Debate between Maria Miller and Pat McFadden

Wednesday 8th December 2021 Westminster Hall

[Mrs Maria Miller (in the Chair)]

Before we begin, I remind Members that they are expected to wear face coverings when they are not speaking in the debate, in line with current guidance. I remind Members that they are asked by the House to have lateral flow tests twice a week. Please make sure that you give members of staff and other people lots of space when you are leaving or coming into the room. I expect that there will be a Division at around 3 o’clock, and I am advised that there could be up to four votes. If the Division bell rings, I will remind hon. Members what to do, but people who are speaking at around that time should bear that in mind, so that it does not freak you out—sorry, that is probably not parliamentary language—or catch you unawares.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

I beg to move,

That this House has considered the treatment of sickle cell.

Thank you for chairing our proceedings, Mrs Miller. I am very pleased to open this debate. I chair the sickle cell and thalassaemia all-party parliamentary group, which works for a better understanding of sickle cell and better treatment for those living with the condition. I am enormously grateful to all hon. Members who have supported the APPG’s work, including our late colleague Sir David Amess, who was one of our officers. I am also grateful to the Sickle Cell Society, which provides the secretariat function for the APPG. I also thank Parliament’s digital engagement unit, and the hundreds of individuals from around the country who have emailed me in advance of today’s debate.

The focus of our debate is the APPG’s recent report, “No one’s listening”, which has a number of findings and recommendations in relation to the care of people with sickle cell. The trigger for our report was the tragic and avoidable death of Evan Nathan Smith in North Middlesex University Hospital in 2019. The coroner’s report into Evan’s death, published in April of this year, found that he would not have died if medical staff had recognised his symptoms and treated him sooner. The report pointed to a

“lack of understanding of sickle cell disease in the medical and nursing staff looking after Mr Smith”

and

“a failure to appreciate the significance of those symptoms by those looking after Mr Smith at the time.”

Evan Smith was just 21 years old; he had his whole life in front of him. His death is not the only one in which a lack of understanding of sickle cell and mistakes in treatment have been contributory causes.

--- Later in debate ---

[Mr McFadden]

I very much agree with my hon. Friend. Indeed, the next finding that I was going to cite is a lack of research and innovation in treatment. There has only been one new drug approved in the UK for sickle cell treatment in decades and it was approved just before our report was published.

For each of the findings, we made recommendations: about training; about compliance with clinical guidelines; about reviews of sickle cell treatment in secondary care; about communications change; very importantly, about a stronger voice for patients in all of this; and in many other areas, too.

Underlying all those individual findings and recommendations are some key overarching themes. First of all, the experiences that I have described have contributed to a damaging loss of trust among sickle cell patients in the system that is there to help them. Some patients told us that they avoided going to hospital at all costs, no matter how serious their crisis, because they found the whole experience so exhausting and debilitating, or, as one woman put it,

“to avoid the mental strain of another battle...when she does not have the energy to advocate for herself”.

It cannot be right that people who need help have so little trust that they do not seek that help from the very system of care that is supposed to be there for them.

Secondly, there is the unavoidable question of race. Sickle cell is a condition that predominantly, but not exclusively, affects black people. Many patients told us of being treated with suspicion when they sought treatment, being regarded as troublesome by staff, being thought of as drug-seekers, and encountering negative and sometimes even hostile attitudes.

The principle of racial equality in healthcare is fundamental. No one is seeking to put one group of people above another, but we want to see equality in healthcare treatment and right now with sickle cell we do not have that. That situation is completely unacceptable and, following this report, it must be addressed.

Thirdly, the findings that we cite in our report are not new; these things have been happening for a long, long time. They have been raised time and again, and the fact that this situation is continuing has led to a great deal of anger and frustration among those living with sickle cell and their families.

Yet, even though all of those things are true, this might—just might—be a moment of opportunity. Why do I say that? Soon after the Secretary of State for Health and Social Care was appointed, he spoke about the “disease of disparity” and about how the covid pandemic had exposed a number of long-standing health inequalities, including racial ones. I welcome the Secretary of State’s commitment to address these inequalities and his warm welcome for our report on the day it was published. Perhaps this is a moment when we are more aware of health inequalities than we would have been before the pandemic; maybe this period can be a turning point for change.

There is no need for this to be a partisan issue. No one is pretending that the findings in our report only began in recent years or under one Government. These things have been there for a long time. However, perhaps the experience of the pandemic will give us a new-found resolve; maybe it will mean that this time people listen.

From the Secretary of State and the Department to the NHS in every part of the United Kingdom, we want this report to mark a moment of change in the treatment of sickle cell. We want to ensure that the issues raised in the report are addressed once and for all, and that training is improved so that staff throughout the system understand, and have a knowledge of, the condition. We want to ensure that care plans and pain relief protocols are adhered to by both the generalist and the specialist parts of the system. We want to step up research and innovation in treatment and restore trust among sickle cell patients. Most of all, we want to ensure that there is equal health treatment for everyone, regardless of the colour of their skin. That is not too much to ask for, but we do not have it at present.

Today I appeal to the Minister, the Secretary of State, my own Front-Bench team and the other parties represented here to become our allies in this and to work with us. Please do not let this be a missed opportunity. Let us collectively resolve that we will not have me, or another chair of the APPG, standing here in a few years’ time making exactly the same points as I am making today. Let us make sure that this time people do listen, that we act on these long-standing failures in the care of people with sickle cell and that we improve healthcare for people with this condition once and for all.

[Mrs Maria Miller (in the Chair)]

I remind hon. Members that if they want to speak in the debate, they should indicate it by rising in the normal way. I intend to call the Front-Bench spokespeople and the Minister just over 30 minutes before the end of the debate, whenever that falls—I will clarify that if there is a vote. I will not put in a time limit; if everybody is respectful of each other’s time, everybody should be able to speak.