Sickle Cell Treatment

Greg Clark Excerpts

Wednesday 8th December 2021 Westminster Hall

[Greg Clark (Tunbridge Wells) (Con)]

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.

--- Later in debate ---

[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.