Sickle Cell Treatment

Janet Daby Excerpts

Wednesday 8th December 2021 Westminster Hall

[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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[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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[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

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.

[Janet Daby]

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.

[Maria Caulfield]

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