Sickle Cell Treatment

Jim Shannon Excerpts

Wednesday 8th December 2021 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you, Mrs Miller, for giving me the opportunity to speak on this issue. I am my party’s health spokesperson and it is always a pleasure to speak on any health issue.

I was talking to a colleague about Stephen Pound, the former Member for Ealing North, who told me about this disease. He and I had a good, friendly relationship. I went to an all-party group event on sickle cell, and through Stephen’s introduction I perhaps gained some small knowledge of the disease. I want to speak today on behalf of those people who have sickle cell. We do not have it in Northern Ireland; thank the Lord we do not have it in Northern Ireland—[Interruption.]

[Mrs Maria Miller (in the Chair)]

Order.

[Jim Shannon]

I was just getting started.

[Mrs Maria Miller (in the Chair)]

There is a Division in the House. I am going to suspend the sitting for 15 minutes, and for 10 minutes for each subsequent vote, but may I encourage Members to return to this Chamber as soon as possible so that we can resume the debate and ensure that as many Members as possible can participate? Thank you.

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[Mrs Maria Miller (in the Chair)]

Order. If the next break is 15 minutes long, and we have just one break, we should complete this debate at around 5 o’clock. Can Members bear that in mind?

[Jim Shannon]

I will not repeat what I have already said; I will not take more than four or five minutes, and then I will give other Members a chance to speak. I was referring to Stephen Pound, the former Member for Ealing North, who introduced me to sickle cell and understanding that process. This happened around the time that the daughter of one of my staff members had taken ill—she lives over here. I am not smarter than anyone else when it comes to health issues, but I just happened to say to my staff member, “I hope she hasn’t got that sickle cell.” From what I understand, she could not have had it. However, she did have primary biliary cholangitis; this is a lifetime health issue—a forever illness. It was just because at that time, I had been made aware of sickle cell, and I wondered if there was any connection.

Sickle cell can affect anyone, although it is more common in people from African and Caribbean backgrounds. The National Institute for Health and Care Excellence estimates that there are currently 12,500 to 15,000 people with sickle cell disease in England, while data from NHS Digital shows that there were almost 25,000 hospital admissions in England in 2020-21 where the primary diagnosis was sickle cell disorders. It is very clear that there is a significant issue when it comes to sickle cell. I commend the right hon. Member for Wolverhampton South East (Mr McFadden) for introducing the debate and raising awareness of the condition—I should have done so at the beginning; apologies for not doing so—and I support all the other speakers who are here today.

A stem cell or bone marrow transplant is currently the only cure for sickle cell disease. Neither are commonly undertaken in sickle cell patients. The US National Heart, Lung and Blood Institute notes that a

“well- matched donor is needed for a patient to have the best chance for a successful transplant”.

In the introduction to sickle cell given to me by Stephen Pound, that was one of the things that we looked at in relation to transplant issues. However, most patients who have sickle cell disease are either too old for transplants, since the risks associated with transplants become greater as a person gets older—and the older someone gets, the less they may want to receive one—or they do not have a relative who is a good enough genetic match to be a donor.

There are many issues that need to be resolved. After reading the APPG on sickle cell and thalassaemia report into the quality of care received by sickle cell patients, “No One’s Listening”, my heart went out to those people who quite simply feel abandoned—many people do. How do we improve that? The Minister and I are good friends, and I know that, when asked for help with this issue, she will come back with a response that the right hon. Member for Wolverhampton South East, and others, will be happy with.

The key findings of the report are a true indictment of the current state of play for sickle cell sufferers. Evidence of substandard care for sickle cell patients, either in a general ward or attending an accident and emergency department, including a widespread lack of adherence to national care standards, is unacceptable, as is the fact that there is clearly a low awareness of sickle cell among health care professionals. There are examples of inadequate training and insufficient investment in sickle cell care. In the Minister’s response, can she give some indication of how that can be improved, so that awareness can be raised and sickness levels addressed?

Many sickle cell sufferers feel that they are not getting answers. That is not a criticism of Government, but if we indicate that there is a problem, as we are doing through this debate, and there is a way of curing that problem, let us do that. There is a clear breakdown that must addressed, not simply clinically, with treatments being made widely available, but further with the training of medical staff and teams to understand this disease and its other medical contraindications.

Those are the issues that we are looking to the Minister to address. I support the right hon. Member for Wolverhampton South East and his attempt to highlight this plight, as he and other speakers have done so well—that will continue in the following contributions. They have not simply highlighted the problem, but pushed the Government and the Minister for action to begin the steps to rectify our current approach.

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[Bell Ribeiro-Addy (Streatham) (Lab)]

It is a pleasure to serve under your chairship, Mrs Miller. I congratulate my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) on securing this debate and on his sterling work as the chair of the sickle cell and thalassaemia all-party parliamentary group. I also commend my neighbour, my hon. Friend the Member for Vauxhall (Florence Eshalomi). She always speaks with such affection about her mother, and I hope that she knows that her mum would be so incredibly proud of her if she were alive today.

The APPG’s landmark report, which was triggered by the tragic and avoidable death of Evan Nathan Smith in North Middlesex hospital, reveals the terrible truth of sickle cell treatment: the substandard care, the stigmatisation and the lack of prioritisation of this condition. As an officer of the group, I was pleased not only that the report came out, but to be able to give evidence as somebody who cared for someone with sickle cell—as someone who lost a loved one, my friend Adjuah, to negligent care. I sat with her through many hospital admissions, and I witnessed mistakes and mistreatment. She said to me on more than one occasion, “One day this hospital is going to kill me,” and one day it actually did. I hope that the Minister has read the report, has taken into account its many recommendations and will outline what steps the Government will take to improve the treatment of sickle cell and the overall experience of sickle cell patients in our national health service.

I also hope that the Minister will touch on what steps the Government will take specifically to improve the treatment of black sickle cell patients. Unfortunately, for those of African and Caribbean heritage, the experience of sickle cell is made far worse by the prevalence of institutional racism. In several past debates and in various inquiries, reports and personal accounts, we have heard how racist attitudes have a negative impact on a patient’s healthcare and experience: lack of research, which is certainly a major issue with sickle cell; biased perceptions of pain tolerance, drug habits and medical knowledge; and experiences of overt racism. All of that makes the experience of living with any condition difficult, but it makes living with sickle cell even harder.

When we talk about institutional racism in the NHS, we are sometimes met with Conservative Members saying, “Why are you calling our NHS staff racist?”. We are not calling NHS staff racist; we value our NHS staff. We are recognising that the institution of the NHS, which is governed by the Government, has issues when it comes to race, and that the policies and practices create biases that cause us problems. We want to know what the Government are doing about that.

Sickle cell is often referred to as an invisible illness, because of how the pain is experienced—often it is invisible to others. However, there is also a distinct lack of education and public awareness of the condition and the symptoms. I point specifically to the issue of education. I studied biomedical sciences and specialised in cellular pathology as an undergraduate. Because of the amount I knew about sickle cell before I went to university, I was struck by just how much it was used as an example but just how little those teaching me knew about its practical aspects. If we do not improve the education of those who treat people, we are never going to improve the outcomes. That definitely needs to be looked at.

The recent removal of discriminatory blood donation restrictions on black donors was a massive step in the right direction, which I really welcome. The largest beneficiaries of the change will be those patients who are often treated through blood transfusions and need rare blood subgroups, such as Ro, that are more common in black people. I have that blood group, so I give blood. Blood donations have gone down rapidly during the pandemic, but they are needed no less at the moment. I encourage all people from the black community, and from all communities, to give blood. I would love to see a blood donation stand in Parliament one day; there are so many of us here, and we should all be able to roll up our sleeves and give a pint or two.

[Jim Shannon]

I think that the Government have been keen to have blood donations, and the hon. Lady has very kindly volunteered and has been donating. She could perhaps be a poster lady for the campaign. Maybe the Minister will take that on board.

[Bell Ribeiro-Addy]

I thank the hon. Gentleman for his contribution, and look forward to seeing him roll up his sleeve as well.

Maintaining those discriminatory blood donation rules for so long was really poor. They were based on outdated HIV science and denied thousands of black sickle cell patients the treatment that they needed, but not only that; the legacy of those rules resulted in a reluctance among the black community to come forward to donate blood. The restrictions have resulted in a shortage of black blood donors and have had a severe effect on the willingness of the black community to donate overall. We have to undo that damage.

I call on the Minister to promise all of us here, and those who are keenly watching the debate, that the Government will act to improve the quality of care and treatment of sickle cell patients. Words are good, but action is better. My hon. Friends have touched on prescriptions and the barriers to receiving proper care. We want action on that. Those watching the debate at home do so in eager anticipation of something that will give them hope of better treatment. I sincerely hope that the Minister will not let them down.