Sickle Cell Treatment

Debate between Maria Miller and Janet Daby

Wednesday 8th December 2021 Westminster Hall

[Janet Daby (Lewisham East) (Lab)]

There have been some really powerful contributions to this debate, especially from my hon. Friend the Member for Vauxhall (Florence Eshalomi). I appreciate everything that she has shared, including the turmoil and difficulty that was endured when she had to care for her mother. I want to acknowledge that, and show her my appreciation and thank her for her contribution.

I also congratulate my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) on securing this important debate. He knows only too well the need to speak about the experience of children, young people and adults who have sickle cell disease and where they experience health inequalities. People with sickle cell disease desperately need us to raise their profile in this place, and I am so pleased that we are able to do so this afternoon. My right hon. Friend and I have worked hard on this issue together through the sickle cell and thalassaemia APPG.

It is truly shameful that the history of treatment of sickle cell in this country is a story of ignorance and neglect. That disease causes unimaginable suffering, most often to people of African and Caribbean descent, a group of people who already experience medical discrimination. I have frequently spoken out in this place about health inequalities, with specific reference to the impact of sickle cell in diverse communities, and the correspondingly poor investment into care and research. I have heard first-hand stories of the suffering of patients, both their physical pain and the psychological trauma of not being able to afford their medication or their condition not being understood as a student, in the workplace or, indeed, in hospitals. I have heard from people who feel worried about disclosing their illness—about their voices not being heard and their pain not being believed. A young man has told me that he is afraid to attend an A&E department in case he is not believed and treated correctly when he is in a crisis, and that is not the first time that I have heard this. Going into hospital should be about alleviating fears and worries. A hospital should be a place of safety, but that is not the general experience among some people who suffer from sickle cell.

When a doctor or nurse does know how to treat someone with sickle cell, that patient feels confident, but too often, that is not the case. Our nation has already heard about the case of Evan Nathan Smith—[Interruption.]

[Mrs Maria Miller (in the Chair)]

Order. The sitting is suspended for 15 minutes.

--- Later in debate ---

[Mrs Maria Miller (in the Chair)]

Everyone is back now, so I will recommence the debate. Just so that everybody can plan their day, I can confirm that we will end the debate at 4.56 pm. I will call the Front Benchers at 4.24 pm.

[Janet Daby]

Thank you, Mrs Miller. Our nation should know of the case of Evan Nathan Smith, but there were also the deaths of two army recruits during military training. If they had been treated appropriately—all of them—their deaths could have been avoided. One of the young men was aged 21; the other was 31. They were undiagnosed with sickle cell. A coroner warned that their deaths could be repeated without urgent Government intervention. The recent inquiry by the APPG found that the majority of sickle cell patients surveyed had received inadequate healthcare support, adding to their physical discomfort and distress. Our NHS is underfunded, and it needs the resources to train staff to have specialist understanding of sickle cell.

The Government have decided not to fund the research that is so desperately needed and they need to say why that is. Will the Minister give young and old sickle cell sufferers hope for their future by ensuring that training on sickle cell is included in the teaching of medical, nursing and midwifery degrees at all universities and colleges? A further area that needs to be addressed urgently is how to respond to a sickle cell crisis. That information is needed, and these professionals need to know what to do.

A sickle cell crisis is when sufferers experience a severe attack. Their blood cells stick together, and it causes unimaginable pain across their whole body. Sadly, too often medical professionals do not recognise the signs of a crisis. Stigma and stereotyping have a part to play in this, and racial discrimination must come to an end. If necessary pain relief is not given, the condition can worsen and go on to affect internal organs, which causes other medical conditions. At its worse, it leads to death. That can be prevented if the Government have the will to make the necessary changes.

NICE guidelines state that the first dose of pain relief should be administered no longer than 30 minutes after a sickle cell crisis starts. Can the Minister tell me why that target is so often missed? Why does the Care Quality Commission not recommend it as an official guideline? What do the Government intend to do to address this?

The APPG report made several recommendations, including guidance for specific NHS trusts to improve their performance. It requested commitments to raise awareness of sickle cell in the medical community, from paramedics to A&E doctors and senior consultants. Professionals from across the public sector also need to be educated in what sickle cell involves, from nursery nurses to teachers and employers. Children, young people and adults with sickle cell need to be understood.

We should investigate whether we can test every baby for this disease. We know that around 300 babies are born with sickle cell each year. If they have not done so already, I ask that the Minister and her team urgently read the APPG report supported by research from the Sickle Cell Society and take heed of the guidance to change practices. Sickle cell patients like Shubby Osoba are describing sickle cell care as a lottery. On some days, in some hospitals, sufferers get the help they need. On other days, in other hospitals, they do not. That is just not good enough.

Over two years ago I asked the then Health Secretary, the right hon. Member for West Suffolk (Matt Hancock) if he would remove the current charge for prescriptions for sickle cell medicines. Some patients are on five different medications a day. For a lifelong illness, that is a heavy financial cost. The right hon. Member for West Suffolk promised to look into this, but all this time later nothing has changed. Will the Minister take forward this measure and relieve patients of yet another burden on their lives?

I also bring it to the Minister’s attention that it is more cost-effective for the public purse to prevent hospitalisation by adding this lifelong disease to the list for free medication than to treat people with this disease in hospital. I am sure Members would agree that prevention is better than cure. In this case, preventing a crisis by free medicine is much cheaper than being in hospital. I impress upon the Minister the need to have a conversation with the Chancellor concerning this issue. So much more needs to be done. On behalf of those with sickle cell and their families, I ask the Minister to respond appropriately to the serious concerns that have been raised by myself and other Members across this Chamber.

[Mrs Maria Miller (in the Chair)]

I remind hon. Members that we need to go to the Front-Bench speeches at 4.24 pm.