Sickle Cell Treatment

Debate between Liz Kendall and Maria Miller

Wednesday 8th December 2021 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

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—

[Mrs Maria Miller (in the Chair)]

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

[Liz Kendall]

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.