Sickle Cell Treatment

Maria Caulfield Excerpts

Wednesday 8th December 2021 Westminster Hall

[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

[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.

[Kate Osamor]

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?

[Maria Caulfield]

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.

[Greg Clark]

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?

[Maria Caulfield]

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.