PARLIAMENTARY DEBATE
Sickle Cell Treatment - 8 December 2021 (Commons/Westminster Hall)

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.

I thank my right hon. Friend, my hon. Friend the Member for Edmonton (Kate Osamor) and all the other Members who have done a lot on this topic in the House. Despite this being a long-running disease, we have not paid enough attention to it at an institutional level, be that in primary or secondary care. That needs urgent redress.

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?

I thank my right hon. Friend for giving way a second time; he is being very generous. Does he agree that that lack of awareness goes all the way through to the research community, whereby sickle cell is one of the most under-researched diseases, despite the fact that research into it has many different and interesting applications through its links to malaria and all sorts of other diseases, and that there is simply not enough research funding going into understanding this disease?

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.

It is a pleasure to serve under your chairmanship, Mrs Miller. I congratulate the right hon. Member for Wolverhampton South East (Mr McFadden) on securing this debate, on his very powerful speech and on his leadership of the APPG. I agreed with every word that he said. He is right that this issue should unite Members in all parties. I have the honour to have recently replaced our very good friend, Sir David Amess, as the Conservative officer of the APPG; I do so with pride. It is a great responsibility and I look to continue the formidable work that Sir David did for this very important cause, as he did for so many other causes in this House.

The right hon. Member for Wolverhampton South East has given a comprehensive account of a very powerful and impactful report. I want to highlight a number of its observations and recommendations, drawn from the evidence given by people who are living with sickle cell or, in many cases, have suffered the consequences of family members falling victim to the condition. My first point reflects on inequality, as referred to by the right hon. Gentleman. I have the honour of chairing the Science and Technology Committee, and some Members will have read the joint inquiry report that my Committee and the Health and Social Care Committee conducted; one of the chapters of that was about the differential impact of covid on different groups in society. We made some recommendations as to how we could improve our practice in future. As the right hon. Gentleman said, that also applies to sickle cell.

In particular, the report emphasises the need for a—if I may put it this way—geographical strategy for the management and response to sickle cell. As the right hon. Gentleman said, sickle cell disproportionately affects black people; we know that the distribution of people of ethnic minorities is not consistent across the country. That will mean that there are some places that have an ethnically diverse population who are used to coping with and helping people with sickle cell; other places will not. That cannot be left to chance; all places have people who will have sickle cell. It is very important that we put in place connections between those hospitals and trusts that have deep experience and those that do not. That would mean that experience could be accessed immediately when the circumstances arose. That is a very important commitment that we should make. The establishment of 42 integrated care systems across the NHS provides the ideal mechanism for that.

The second point from the report that I wanted to emphasise—which the right hon. Member for Wolverhampton South East also touched on—is the differential practice within hospitals. Some disciplines, such as haematology departments, have very high levels of understanding and expertise in caring for sickle cell patients, but other departments and disciplines within the same hospitals do not. I am particularly concerned by the patchy experience of A&E departments and emergency medicine. That is very important, and I hope that the Minister, in her response, will point to ways in which the diffusion of knowledge across hospitals—rather than its remaining in silos—can be seized on as a practical outcome of this report, as it is clearly attainable.

Thirdly, I want to emphasise the importance of giving timely pain relief to people presenting in A&E with sickle cell. We know that there is an acute need for that to be administered promptly. The National Institute for Health and Care Excellence standard is that that should be within 30 minutes, but the report was striking in noting that only 30% of adults—for example—said that they were given pain relief early enough. It is greatly concerning that people are suffering great distress during that time, and that has longer-term consequences for their health. In this time of covid, and as we enter into the winter when, as we know from our experiences as constituency MPs, A&E departments come under particular pressure and waiting times are understandably longer, there is an especial need for emergency medical practitioners to be able to not only spot but respond to the very immediate needs of people presenting in A&E departments with sickle cell.

For the fourth aspect that I would like to emphasise, I will again draw from our work in our covid inquiry. A consequence of covid and the response to it in hospitals has been that, as we know, there are great restrictions on relatives and carers accompanying people into hospitals. We looked at the experience of people with learning disabilities who did not have people to advocate for them. Obviously we are talking about sickle cell, not about people with learning disabilities; nevertheless, the assistance of their relatives, loved ones and carers is particularly important. They are able to communicate the particular needs of the patient at a time when the sufferer may not be able to express themselves because of intense pain. I hope that might be recognised during the remaining period of this covid pandemic—that there are patients who need people to help communicate their needs if they are in a state that means they cannot do that directly themselves. Of course, one means of doing that is to pay attention to their care plans, so that they are followed. That would be a way in which we can ensure that the right treatment is given.

Those are just four of the themes that come out of a very comprehensive and powerful report, but they are four aspects that have a particular relevance to the immediate weeks and months ahead, as we face some difficulties across the NHS. It is important, as we seek to ensure that covid does not exacerbate inequalities, that this potential further source of inequality is attended to, and that action is taken by the NHS so that conditions during the weeks ahead can be better than they would otherwise be.

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.

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.]

Order.

I was just getting started.

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.

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?

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.

It is a pleasure to serve under your chairship, Mrs Miller. I pay tribute to my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) for securing this important debate and for his tireless work as the chair of the APPG on sickle cell and thalassaemia. I would also like to reflect on the work of the late hon. Member for Southend West, who was a former officer of the APPG, on sickle cell and to say how much poorer we are today without his contribution, which I know would have been well received by all of us.

This debate is quite personal for me. Reading through the report about Evan’s lack of care and the failings brought back many memories. My late mother suffered from sickle cell anaemia, which is a disease that does not discriminate. My late mum was one of 12 children—same mum and same dad—but she was the only child who had full-blown sickle cell. Some of my aunts and uncles had the trait. I found out that I had the trait when I got pregnant with my daughter, who is now six years old. I went on to have a healthy daughter and a healthy son. My daughter has the trait, but my son does not. That shows how sickle cell can affect anybody.

Reading through some of the failings in Evan’s care—or lack of care—made me, as my late mother’s principal carer, remember some of the issues we encountered in the 1990s. As a young child, I had to learn about diamorphine, co-codamol, penicillin, folic acid and the large variety of painkillers that sickle cell patients have to take. I knew how important it was for my mum to have access to oxygen when she had shortness of breath, and to hear that Evan had to call 999 from his hospital bed to get oxygen, in 2019, and to see sickle cell patients failed so badly, breaks my heart.

My mum had two oxygen units at home; that is how severe her sickle cell was. I know that for many sickle cell patients this time of year is so difficult and that they have to make sure that they are wrapped up warm because, once they start getting cold, that pain gets into their bones. I spent many nights rubbing my mum’s legs and back, trying to help her relieve the pain. I know how important it is to make sure that when the ambulance arrives, the symptoms are properly outlined so that when she arrives at A&E she is prescribed with the right drugs, not paracetamol.

I know how to describe the searing pain that sickle cell patients face when they are going through a crisis, with doctors and some nurses looking at them with a blank expression because they do not understand. My mum used to describe that pain to me as someone chiselling at her knee, her bones and her joints. That is why patients need that strong pain medication, not because they are addicted to painkillers. Calling sickle cell patients addicts is totally wrong.

I know how important it is to ensure there is access to good quality housing and that patients who suffer from sickle cell have time off for appointments. I know how timely it was—a matter of life and death—that my mum got the blood transfusions she needed. This 21-year-old boy was failed. With the right level of care and support, sickle patients can lead a fulfilling life. My mum went on to have three healthy children—I am one of three girls—and thankfully, she saw her granddaughter before she died in 2015, when she was 60. Evan will never have that chance. He will not have a chance to start a family, his parents will not have a chance to see their grandchildren, and he will not have a chance to fulfil his life ambitions. Why? Because he was failed by the doctors and nurses who should have helped him. That area has a high prevalence of sickle cell patients, so why did they not know what to do? Those doctors and nurses should be caring for sickle cell patients, regardless of their race.

The APPG’s report highlights the many failings that took place. I will not go into it, as many Members have highlighted it, but it is important that we listen to its clear recommendations. The fact is that our communities, not just in London but right across the UK, are becoming more diverse, and we have to make sure that the people going into the health system now understand this disease. We are going to see more diverse communities, and this is not just about black, Asian and minority ethnic people in London, but about BAME people right across the country. Our population will continue to be diverse, which is something we should celebrate, but those people will be scared, not wanting to move to and live in areas where this disease is not understood. That understanding existed at King’s College Hospital where my mum was cared for, and at Guy’s and St Thomas’ in my constituency now, but there were times when my mum would be scared to visit family members in other parts of the country because she did not know whether, if she came into a crisis, she would be understood if she had to go into hospital.

Sickle cell patients should not be scared to travel and leave their areas, but basic things that should be available to everybody are being denied them. I thought the days of patients not being believed about their pain threshold—being told that they should come back, or that they should go and buy paracetamol over the counter—were over, but all those things seem to be happening now, so this issue is really important. I hope that the Minister will respond to the critical recommendations in this report with a clear action plan. No one should be failed in the way that Evan has been failed. No one should have to die because they suffer from sickle cell.

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.]

Order. The sitting is suspended for 15 minutes.

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.

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.

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

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.

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.

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.

I am grateful to the right hon. Member for Wolverhampton South East (Mr McFadden) for securing this important debate, for the manner in which he opened it and for the work of the APPG that he chairs. He said we should all be concerned by the lack of understanding of sickle cell disease. I think we all agree with that fact. This has been a consensual debate and a valuable reminder that this issue is about the pain and loss that impacts on many families. That pain was well demonstrated by the personal testimony of the hon. Member for Vauxhall (Florence Eshalomi), who spoke so movingly of her mother’s experience. I am in full agreement that the increasing diversity of our communities amplifies the need for greater awareness of the disease.

The hon. Member for Lewisham East (Janet Daby) used the term “ignorance and neglect”, which summed things up pretty well, given that deaths from sickle cell disease are pretty much avoidable. She also highlighted the cost of sickle cell medicines—a point I will return to. The hon. Member for Streatham (Bell Ribeiro-Addy) also gave a personal account of her experience of the disease and spoke strongly about the institutional racism that has been experienced. This matter should concern all of us from all parts of the country. I commend her for her action on blood donation—something, I must confess, that I have always been too frightened to do myself. We all need to consider the importance of giving blood.

Like the hon. Member for Strangford (Jim Shannon), I was impressed by the APPG’s report, “No One’s Listening”, published in November 2021 with its stakeholder group, the Sickle Cell Society. The report found that sickle cell patients too often receive substandard care; that community care for sickle cell patients is generally inadequate or non-existent, which leads to unnecessary admissions to hospital; and that awareness of sickle cell disease is low, as we have heard repeatedly.

The right hon. Member for Tunbridge Wells (Greg Clark) highlighted the differential impact of geographic factors, even within the same hospitals. That is an important point that I had not properly considered, although I had thought about the race element affecting different parts of the country differently. The hon. Member for Edmonton (Kate Osamor) highlighted the fear of sufferers even of attending hospitals, particularly in areas with a high population susceptible to sickle cell disease. Again, that is a point I had not thought of, so I am grateful for that commentary.

Sickle cell disease overwhelmingly affects people from particular heritage backgrounds, and the report highlighted the role of racism in diagnosing and treating sickle cell patients. People from African, Asian, Caribbean, eastern Mediterranean and middle eastern backgrounds are more likely to have sickle cell disease or to carry the gene, and it is therefore impossible to debate this subject without considering race and the failings to adequately provide equality of treatment within the existing system. It is particularly concerning that many sufferers believe that racist attitudes affect healthcare providers’ perceptions of the disease. A number of Members highlighted the systematic racism that appears to exist.

Sickle cell disease is a genetic blood disease. There are treatments to manage it, but it is a lifelong condition. These disorders are inherited, with the only cure being transplants. Approximately 5% of the world’s population carries trait genes for inherited blood disorders, and around 15,000 sufferers in the UK have sickle cell disease, which affects how the body produces red blood cells. Normal red blood cells around the red blood cells affected by sickle cell disease harden and become sickle-shaped, like a crescent moon. This causes the red blood cells to die too quickly and block blood vessels, leading to symptoms that are often painful, as we heard in a number of testimonies.

The Scottish Government are committed to improving the availability of treatment services in order for patients with sickle cell disease to receive the care they need. The Scottish Government’s NHS recovery plan for 2021-26 sets out the plan for healthcare over the next five years, including investment of more than £400 million to create a network of 10 national treatment centres across Scotland, increasing capacity for diagnostic care. The plan also sets out the Scottish Government’s £155 million investment to provide general practices and their patients with support from a range of healthcare professionals in the community. The plan includes the recruitment of further pharmacists to help with patients’ repeat prescriptions and medicine reviews and of community nurses to assist with the diagnostic tests and chronic disease management.

It is vital that we design and develop services that meet the needs of everyone, with a focus on those experiencing health inequalities, and we have heard much of those inequalities today. The UK Government should follow the lead of the Scottish Government in the provision of free prescriptions to those who suffer from sickle cell disease and beyond. Sickle cell disease usually requires lifelong treatment, and a medicine called hydroxycarbamide—I probably spell it worse than I pronounce it—may be prescribed by a patient’s doctor to manage episodes of pain. Patients are usually told to take it as a capsule once a day.

In Scotland, we abolished prescription charges in 2011, but in England the current charge is £9.35 per item. There is a live petition—e-petition 588355—to encourage the UK Government to add sickle cell to the prescription charge exemption list. They responded on 6 August that they have

“no plans to make changes to the list of medical conditions exempting patients from prescription charges”.

That petition has a few days left for people to sign it. I encourage the Minister to reconsider the position on prescription charges and to support the recommendations detailed in the excellent all-party parliamentary group report.

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—

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

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.

It is a pleasure to serve under your chairmanship, Mrs Miller. I thank the right hon. Member for Wolverhampton South East (Mr McFadden) for securing this important debate, for all his hard work chairing the sickle cell and thalassaemia all-party parliamentary group and for the report it has put together. It is a crucial report that highlights some of the gaps in the treatment, management and experience of those with sickle cell disease. I also thank the hon. Member for Vauxhall (Florence Eshalomi) for sharing her experience. Hearing first-hand experience of what it is like to have a family member going through a sickle cell crisis and the experience of healthcare is extremely helpful.

Anyone who has read the “No One’s Listening” report cannot fail to be moved by some of the findings. It is such an important issue when we consider that the majority of patients who suffer with sickle cell are black. The tragic death of Evan highlights some of the disparities that are part of this issue. Managing the disease is much more than a physical problem. I thank the APPG and the Sickle Cell Society for the work they have done to shine a light on the challenges facing sickle cell patients. Any failure in care is one failure too many.

I want to reassure all colleagues here that the Government are not just listening; action is taking place right now. I think colleagues will be pleased by some of the changes already made since the report was done, which we want to build on. I am happy to work with the APPG and Members across the House to address the gaps highlighted in the report.

As the shadow Minister, hon. Member for Leicester West (Liz Kendall), said, working with the sickle cell community is vital if we are to address these issues. NHS England is doing that, working with the community to develop a new service. The specifications have outlined a new model of care for the development of 10 haemoglobinopathy co-ordinating centres for sickle cell disease care in England, each leading a network of care and overseeing specialist teams and local centres.

What this means—what many have described in the debate today—is that those specialist centres, which is where patients experience really good care, feel very confident and get great advice, are now able to reach out to local centres and share their experience, so if a patient does not have access to a specialist centre, they can still access that specialist care through their local facilities. That is only just starting, but it is making a huge difference to the experience of patients and in supporting staff, many of whom might never have encountered a sickle cell patient. Some might have, but that might have been a long time ago. Having the support of specialist input is crucial.

In addition, the National Haemoglobinopathy Panel has been set up to run a national multidisciplinary meeting and to provide clinical leadership and co-ordination for those haemoglobinopathies co-ordinating centres, so that patients’ cases can be reviewed by a national group of specialists, and recommendations and support can be fed in.

NHS England also provided funding last year and this year to develop and update a national register—a database of UK patients with red cell disorders. Previously, although testing has been available for babies to identify whether they have sickle cell, that has never been fed into the NHS. With the new register, GPs and hospitals can all identify who in their local communities has sickle cell, and they can start to plan resources and services accordingly. Hopefully, no one will slip through the gaps, and when a patient turns up at A&E they will be identified as a sickle cell patient without having to explain all the issues that they face.

I thank the Minister for what she is saying about the list that will be created for babies. Will there be a similar list of professionals in certain areas who have experience of working with sickle cell patients? The Minister is saying that the list will be set up retrospectively, but it would be good to know what resources are already available.

The hon. Member makes an excellent point. The HCCs—the 10 specialist networks that have been set up around the country—will do just that. People will be registered, so that anyone who lives where there is a sickle cell community but no specialist provision is available can feed in and advice can be passed back and forth. This is the start of the process of making that happen in practice. There has not yet been an evaluation because the service is very new, but it is expected that when it publishes the results of its activity a significant improvement in standards will be seen. The results will be used to target areas of concern. We will see where improvements have been made and where improvements still need to be made. Once the service starts to report back, I think colleagues will be pleased with the progress.

The education and awareness of medical professionals was raised by everyone in the debate, and was highlighted in the “No One’s Listening” report. Health Education England has recently made improvements to the medical curriculum in relation to sickle cell and thalassaemia, and now the curriculum has, as core competencies, modules on those. Health Education England has held discussions with royal colleges to ensure that the curriculum is delivered to all four nations.

There are now two e-learning modules with sickle cell content—NHS screening programmes and the maternity support worker programme—and other e-learning programmes on wider areas, such as anaesthesia, radiology and pain management, are also including sessions on sickle cell. We are making some progress on that, but for me, as someone who has worked in healthcare, that education needs to be ongoing. It is great for people to get some education when they are students, but if they do not come across a sickle cell patient for five or six years, that learning might be at the back of their mind. We also need to focus on ongoing education.

NHS Blood and Transplant is working really hard to improve the service experienced by patients. Given that, until recently, blood transfusions were one of only two treatments for these conditions, much work has been done on that. NHS Blood and Transplant submitted, I believe, evidence to the report and described a number of areas in which it is involved that could be improved. Some of that is being worked on right now, including improving matching of more donors of African descent, improving co-ordination of care and improving consistent access to red cell exchange services. Some work is being done specifically on that area.

As has been mentioned by many colleagues, we know that sickle cell disease is particularly common in people with African or Caribbean family backgrounds. Health inequalities are made much worse if someone has sickle cell or has experienced covid, and we know that in maternity, women from black and Asian ethnic groups have disproportionately negative outcomes. I am meeting the Equalities Minister fairly soon to look at the specific areas of health where black communities in particular are disproportionately affected and have poorer outcomes. I am happy to update colleagues—we are very keen to look at those areas—and to work jointly with the Equalities Minister to improve outcomes in those areas.

The Office for Health Improvement and Disparities, launched this October, plans to tackle health disparities across the UK. The NHS Race and Health Observatory has also developed a new evidence-focused remit to tackle ethnic health inequalities, and sickle cell is one area that it is looking at. Coinciding with the launch of the APPG report in November, the observatory appointed a sickle cell expert, Dr Carl Reynolds, to drive forward work in this area. He is reviewing the evidence that contrasts sickle cell care with other rare genetic diseases, to examine the robustness of sickle cell patient care pathways within the NHS. That work will additionally support the work of other organisations and build on many of the report’s findings.

I will just touch on research and treatment. As, I think, the right hon. Member for Wolverhampton South East said, a new drug has been developed, and recommended by NICE, for sickle cell disease—the first in more than 20 years. It is expected to reduce the number of times that a patient will end up in A&E and go through a crisis. Research is vital to develop new drugs and improve treatments, and I want to reassure colleagues that funding is available.

The National Institute for Health Research has £1 billion per year set aside for research, researchers on any condition can apply for funding from that pot. It is often the case that researchers for rare diseases such as sickle cell do not come forward with proposals because there tend to be far more researchers and clinicians for better-known conditions, and far more charities driving researchers forward to apply for research funding. Not only funding, but help and guidance is available. If there is research that clinicians or academics want to do in this area, we are very keen to see them come forward and apply for that funding. If they are not successful, they will receive feedback as to why that was. Funding is available; it is not ringfenced for any particular condition, so researchers on all conditions may apply.

In conclusion, I again thank all members of the APPG for their hard work on behalf of the sickle cell community, but also for their important report, which highlights many of the discrepancies and gaps that sickle cell patients have been facing. Deaths such as Evan’s, simply because of a lack of care and expertise when he was admitted to hospital, are unacceptable, and we want to change that. I think that today’s debate really highlights how much work there is to do

Before the Minister sits down, there is one point that I do not believe she has touched on—prescriptions. I should be grateful if she would let us know whether the Government have any plans to make prescriptions free for people who require medication for sickle cell.

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.

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?

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.

On the point about A&E, I welcome, as I am sure colleagues do, the commitment to look at the figures. Given that we have APPG reports, could the Minister perhaps circulate them, through the NHS, to A&E departments to remind them of the current NICE guidance?

My right hon. Friend makes an excellent point. I am happy to work with departmental officials to look at how, if the NICE guidelines are there, we can make sure they are distributed so that all clinical areas are aware of them, particularly, as the point was made, to areas where there is a high prevalence of sickle cell that are more likely to see someone admitted to A&E. I am happy to take that forward.

I want to reassure colleagues that progress is being made. I want to place on the record my thanks to all those in specialist units who work really hard behind the scenes to improve the care for sickle cell patients and to get information out to the NHS across the board. Where there are gaps, I am happy to work with the APPG to make sure we address those.