Sickle Cell Treatment

Maria Miller Excerpts

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.

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[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.

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[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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On resuming—

[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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[Janet Daby (Lewisham East) (Lab)]

There have been some really powerful contributions to this debate, especially from my hon. Friend the Member for Vauxhall (Florence Eshalomi). I appreciate everything that she has shared, including the turmoil and difficulty that was endured when she had to care for her mother. I want to acknowledge that, and show her my appreciation and thank her for her contribution.

I also congratulate my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) on securing this important debate. He knows only too well the need to speak about the experience of children, young people and adults who have sickle cell disease and where they experience health inequalities. People with sickle cell disease desperately need us to raise their profile in this place, and I am so pleased that we are able to do so this afternoon. My right hon. Friend and I have worked hard on this issue together through the sickle cell and thalassaemia APPG.

It is truly shameful that the history of treatment of sickle cell in this country is a story of ignorance and neglect. That disease causes unimaginable suffering, most often to people of African and Caribbean descent, a group of people who already experience medical discrimination. I have frequently spoken out in this place about health inequalities, with specific reference to the impact of sickle cell in diverse communities, and the correspondingly poor investment into care and research. I have heard first-hand stories of the suffering of patients, both their physical pain and the psychological trauma of not being able to afford their medication or their condition not being understood as a student, in the workplace or, indeed, in hospitals. I have heard from people who feel worried about disclosing their illness—about their voices not being heard and their pain not being believed. A young man has told me that he is afraid to attend an A&E department in case he is not believed and treated correctly when he is in a crisis, and that is not the first time that I have heard this. Going into hospital should be about alleviating fears and worries. A hospital should be a place of safety, but that is not the general experience among some people who suffer from sickle cell.

When a doctor or nurse does know how to treat someone with sickle cell, that patient feels confident, but too often, that is not the case. Our nation has already heard about the case of Evan Nathan Smith—[Interruption.]

[Mrs Maria Miller (in the Chair)]

Order. The sitting is suspended for 15 minutes.

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On resuming—

[Mrs Maria Miller (in the Chair)]

Everyone is back now, so I will recommence the debate. Just so that everybody can plan their day, I can confirm that we will end the debate at 4.56 pm. I will call the Front Benchers at 4.24 pm.

[Janet Daby]

Thank you, Mrs Miller. Our nation should know of the case of Evan Nathan Smith, but there were also the deaths of two army recruits during military training. If they had been treated appropriately—all of them—their deaths could have been avoided. One of the young men was aged 21; the other was 31. They were undiagnosed with sickle cell. A coroner warned that their deaths could be repeated without urgent Government intervention. The recent inquiry by the APPG found that the majority of sickle cell patients surveyed had received inadequate healthcare support, adding to their physical discomfort and distress. Our NHS is underfunded, and it needs the resources to train staff to have specialist understanding of sickle cell.

The Government have decided not to fund the research that is so desperately needed and they need to say why that is. Will the Minister give young and old sickle cell sufferers hope for their future by ensuring that training on sickle cell is included in the teaching of medical, nursing and midwifery degrees at all universities and colleges? A further area that needs to be addressed urgently is how to respond to a sickle cell crisis. That information is needed, and these professionals need to know what to do.

A sickle cell crisis is when sufferers experience a severe attack. Their blood cells stick together, and it causes unimaginable pain across their whole body. Sadly, too often medical professionals do not recognise the signs of a crisis. Stigma and stereotyping have a part to play in this, and racial discrimination must come to an end. If necessary pain relief is not given, the condition can worsen and go on to affect internal organs, which causes other medical conditions. At its worse, it leads to death. That can be prevented if the Government have the will to make the necessary changes.

NICE guidelines state that the first dose of pain relief should be administered no longer than 30 minutes after a sickle cell crisis starts. Can the Minister tell me why that target is so often missed? Why does the Care Quality Commission not recommend it as an official guideline? What do the Government intend to do to address this?

The APPG report made several recommendations, including guidance for specific NHS trusts to improve their performance. It requested commitments to raise awareness of sickle cell in the medical community, from paramedics to A&E doctors and senior consultants. Professionals from across the public sector also need to be educated in what sickle cell involves, from nursery nurses to teachers and employers. Children, young people and adults with sickle cell need to be understood.

We should investigate whether we can test every baby for this disease. We know that around 300 babies are born with sickle cell each year. If they have not done so already, I ask that the Minister and her team urgently read the APPG report supported by research from the Sickle Cell Society and take heed of the guidance to change practices. Sickle cell patients like Shubby Osoba are describing sickle cell care as a lottery. On some days, in some hospitals, sufferers get the help they need. On other days, in other hospitals, they do not. That is just not good enough.

Over two years ago I asked the then Health Secretary, the right hon. Member for West Suffolk (Matt Hancock) if he would remove the current charge for prescriptions for sickle cell medicines. Some patients are on five different medications a day. For a lifelong illness, that is a heavy financial cost. The right hon. Member for West Suffolk promised to look into this, but all this time later nothing has changed. Will the Minister take forward this measure and relieve patients of yet another burden on their lives?

I also bring it to the Minister’s attention that it is more cost-effective for the public purse to prevent hospitalisation by adding this lifelong disease to the list for free medication than to treat people with this disease in hospital. I am sure Members would agree that prevention is better than cure. In this case, preventing a crisis by free medicine is much cheaper than being in hospital. I impress upon the Minister the need to have a conversation with the Chancellor concerning this issue. So much more needs to be done. On behalf of those with sickle cell and their families, I ask the Minister to respond appropriately to the serious concerns that have been raised by myself and other Members across this Chamber.

[Mrs Maria Miller (in the Chair)]

I remind hon. Members that we need to go to the Front-Bench speeches at 4.24 pm.

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[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Miller. Like everyone, I congratulate the right hon. Member for Wolverhampton South East (Mr McFadden) on securing this debate on an extremely important issue. I pay tribute to the members, officers and staff of the APPG on sickle cell and thalassaemia. The report “No One’s Listening” is one of the most powerful, serious and substantial reports I have read in a long time in this place and while working in the health and care field. The detail, analysis and recommendations it provides are really important and cannot be ignored.

As we heard from right hon. and hon. Members, the report was carried out in response to the absolutely tragic case of Evan Nathan Smith, who died in the most utterly appalling circumstances with his whole life ahead of him. It is crystal clear from the coroner’s inquest that he would not have died had it not been for the failures in his care: the failure to get the pain relief he desperately needed, the failure to give him a timely blood transfusion and the utter lack of understanding about sickle cell Opposition the part of the staff looking after him, in an area where they should have known because of the local population.

Most importantly, the report highlights far more fundamental issues, which my right hon. Friend the Member for Wolverhampton South East picked out in his comments. First, this is not an isolated incident, as my hon. Friends the Members for Vauxhall (Florence Eshalomi) and for Streatham (Bell Ribeiro-Addy) so powerfully and personally described. There is a pattern of years of substandard care in this crucial area. Patients understandably lose trust in the system. Secondly, there is the issue of race—the racial inequalities in the standard of care being provided and the stereotyping and discriminatory attitudes towards black people that have contributed to that. Of course, those two things are inextricably linked—

[Mrs Maria Miller (in the Chair)]

Order. Could I encourage the hon. Lady to project her voice this way?

[Liz Kendall]

I apologise. I should be speaking to people rather than into a void.

Unless we understand those two fundamental issues, we will never get the change we need. I want to use my time not to repeat what others have said but to talk about how we get real and lasting change, thinking about some of my own experience of working in health and care for 20 to 25 years. There is a lot in the report that is excellent. Much of it is coming from the top down, and there are important recommendations that should be followed, but the real change that we need to see is to give patients and their families far more say, control and involvement in the system, because that is how we will get lasting change.

Five key areas need to be addressed. The first is tackling the appalling variations in care that the report highlights. The really important issue, which my hon. Friend the Member for Vauxhall picked up, is that as our country becomes more diverse—something we should celebrate—this issue will not just affect London. That point was made in evidence to the APPG by Global Blood Therapeutics, which clearly said that the geography of sickle cell is starting to change, with patients increasingly moving outside London. In understanding that, we have to ensure that variations in care are ended in all parts of the country.

One of the most important recommendations in the report is that all NHS trusts should share findings of their internal reviews into incidents involving serious sickle cell care failings with the National Haemoglobinopathy Panel so that learnings can be communicated across the country. It is within the remit of the Minister and the Department to ensure that that happens, so I hope she will set out what she intends to do and what discussions she has had with NHS England about making it happen.

The second key recommendation around variations is that the CQC should make compliance with NICE clinical guidelines on the delivery of pain relief within 30 minutes for sickle cell patients an essential criterion that it uses when assessing NHS trusts. As far as I can see, the CQC has not responded to the report. I wonder what discussions the Minister has had with the CQC about that, because it is crucial.

The third issue around variation, which the right hon. Member for Tunbridge Wells (Greg Clark) touched on, is that we now have integrated care systems across the country. Every time there is an NHS reorganisation, and there have been many over the last two decades—I have been involved in some myself—we lose institutional memory about these issues and findings. What discussions has the Minister had with colleagues in the NHS about how we ensure that, when people have made changes or are trying to make a difference, that is reflected in the new ICSs as they get up and running across the country?

The second key issue is around communication and the lack of joined-up care. There are so many parts of the NHS where those conversations do not happen, and it is patients who are left telling people what they need. Will the Minister set out what she will do to try to ensure that NHS trusts improve communication within their own hospitals and follow the particular recommendation that all haematology teams are informed whenever a sickle cell patient comes into A&E or on to a general ward? I will pursue that with University Hospitals of Leicester in my constituency as a result of the report to ensure that it happens.

Thirdly, improved awareness of the condition and training are critical. That has the power to make one of the biggest differences. Staff are not purposely not understanding it; they need to be trained in it. The report sets out recommendations about universities having proper training, and says that the Nursing and Midwifery Council and the General Medical Council should urgently review their approach to training on sickle cell conditions. Again, I do not think that the NMC or the GMC have responded, although I may be mistaken, but unless people are properly trained how will they make a difference in the future?

The fourth issue is that of race, racism and discrimination within the NHS. I know from my own diverse constituency and the work that I have done with Leicester Against Racism that there is much that can be done to improve understanding of the different issues facing black, Asian and minority ethnic communities in the NHS, to improve access to and outcomes of care, to understand the implicit and explicit discriminatory attitudes that may be present in the NHS and, crucially, to have better representation of BAME communities in senior NHS leadership positions.

During today’s debate people have talked about their own experiences, understanding the issues and showing that Parliament can act on the issues that matter to our communities because of our diverse representation. That is what we need in the NHS. I hope the Minister will be able to say what NHS England is doing about those issues.

Last but by no means least, the NHS always changes its structures and organisations, and people move around, so it is often difficult to embed change in the system. In my experience, the only way to do that is to give patients and their families far more voice, and I include training in that.

Imagine if my hon. Friend the Member for Vauxhall—if she was not extremely busy representing her constituents—was involved in the training of health professionals and told her story so that people could hear what had happened to her. It would be a powerful driver of change if the people who use services could be part of the training and the way the system is regulated. That is how we will get real change in the system and I hope the Minister will set that out.

In conclusion, the report provides an opportunity to make substantial and lasting change. I hope the Minister will set out the Government’s response when she stands to speak.