Sickle Cell Treatment

Martyn Day Excerpts

Wednesday 8th December 2021 Westminster Hall

[Martyn Day (Linlithgow and East Falkirk) (SNP)]

I am grateful to the right hon. Member for Wolverhampton South East (Mr McFadden) for securing this important debate, for the manner in which he opened it and for the work of the APPG that he chairs. He said we should all be concerned by the lack of understanding of sickle cell disease. I think we all agree with that fact. This has been a consensual debate and a valuable reminder that this issue is about the pain and loss that impacts on many families. That pain was well demonstrated by the personal testimony of the hon. Member for Vauxhall (Florence Eshalomi), who spoke so movingly of her mother’s experience. I am in full agreement that the increasing diversity of our communities amplifies the need for greater awareness of the disease.

The hon. Member for Lewisham East (Janet Daby) used the term “ignorance and neglect”, which summed things up pretty well, given that deaths from sickle cell disease are pretty much avoidable. She also highlighted the cost of sickle cell medicines—a point I will return to. The hon. Member for Streatham (Bell Ribeiro-Addy) also gave a personal account of her experience of the disease and spoke strongly about the institutional racism that has been experienced. This matter should concern all of us from all parts of the country. I commend her for her action on blood donation—something, I must confess, that I have always been too frightened to do myself. We all need to consider the importance of giving blood.

Like the hon. Member for Strangford (Jim Shannon), I was impressed by the APPG’s report, “No One’s Listening”, published in November 2021 with its stakeholder group, the Sickle Cell Society. The report found that sickle cell patients too often receive substandard care; that community care for sickle cell patients is generally inadequate or non-existent, which leads to unnecessary admissions to hospital; and that awareness of sickle cell disease is low, as we have heard repeatedly.

The right hon. Member for Tunbridge Wells (Greg Clark) highlighted the differential impact of geographic factors, even within the same hospitals. That is an important point that I had not properly considered, although I had thought about the race element affecting different parts of the country differently. The hon. Member for Edmonton (Kate Osamor) highlighted the fear of sufferers even of attending hospitals, particularly in areas with a high population susceptible to sickle cell disease. Again, that is a point I had not thought of, so I am grateful for that commentary.

Sickle cell disease overwhelmingly affects people from particular heritage backgrounds, and the report highlighted the role of racism in diagnosing and treating sickle cell patients. People from African, Asian, Caribbean, eastern Mediterranean and middle eastern backgrounds are more likely to have sickle cell disease or to carry the gene, and it is therefore impossible to debate this subject without considering race and the failings to adequately provide equality of treatment within the existing system. It is particularly concerning that many sufferers believe that racist attitudes affect healthcare providers’ perceptions of the disease. A number of Members highlighted the systematic racism that appears to exist.

Sickle cell disease is a genetic blood disease. There are treatments to manage it, but it is a lifelong condition. These disorders are inherited, with the only cure being transplants. Approximately 5% of the world’s population carries trait genes for inherited blood disorders, and around 15,000 sufferers in the UK have sickle cell disease, which affects how the body produces red blood cells. Normal red blood cells around the red blood cells affected by sickle cell disease harden and become sickle-shaped, like a crescent moon. This causes the red blood cells to die too quickly and block blood vessels, leading to symptoms that are often painful, as we heard in a number of testimonies.

The Scottish Government are committed to improving the availability of treatment services in order for patients with sickle cell disease to receive the care they need. The Scottish Government’s NHS recovery plan for 2021-26 sets out the plan for healthcare over the next five years, including investment of more than £400 million to create a network of 10 national treatment centres across Scotland, increasing capacity for diagnostic care. The plan also sets out the Scottish Government’s £155 million investment to provide general practices and their patients with support from a range of healthcare professionals in the community. The plan includes the recruitment of further pharmacists to help with patients’ repeat prescriptions and medicine reviews and of community nurses to assist with the diagnostic tests and chronic disease management.

It is vital that we design and develop services that meet the needs of everyone, with a focus on those experiencing health inequalities, and we have heard much of those inequalities today. The UK Government should follow the lead of the Scottish Government in the provision of free prescriptions to those who suffer from sickle cell disease and beyond. Sickle cell disease usually requires lifelong treatment, and a medicine called hydroxycarbamide—I probably spell it worse than I pronounce it—may be prescribed by a patient’s doctor to manage episodes of pain. Patients are usually told to take it as a capsule once a day.

In Scotland, we abolished prescription charges in 2011, but in England the current charge is £9.35 per item. There is a live petition—e-petition 588355—to encourage the UK Government to add sickle cell to the prescription charge exemption list. They responded on 6 August that they have

“no plans to make changes to the list of medical conditions exempting patients from prescription charges”.

That petition has a few days left for people to sign it. I encourage the Minister to reconsider the position on prescription charges and to support the recommendations detailed in the excellent all-party parliamentary group report.