Sickle Cell Treatment

Bell Ribeiro-Addy Excerpts

Wednesday 8th December 2021 Westminster Hall

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

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

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

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

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

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

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

[Jim Shannon]

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

[Bell Ribeiro-Addy]

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

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

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

--- Later in debate ---

[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

[Bell Ribeiro-Addy]

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.

[Maria Caulfield]

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.