Sickle Cell Treatment

Florence Eshalomi Excerpts

Wednesday 8th December 2021 Westminster Hall

[Florence Eshalomi (Vauxhall) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Mrs Miller. I pay tribute to my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) for securing this important debate and for his tireless work as the chair of the APPG on sickle cell and thalassaemia. I would also like to reflect on the work of the late hon. Member for Southend West, who was a former officer of the APPG, on sickle cell and to say how much poorer we are today without his contribution, which I know would have been well received by all of us.

This debate is quite personal for me. Reading through the report about Evan’s lack of care and the failings brought back many memories. My late mother suffered from sickle cell anaemia, which is a disease that does not discriminate. My late mum was one of 12 children—same mum and same dad—but she was the only child who had full-blown sickle cell. Some of my aunts and uncles had the trait. I found out that I had the trait when I got pregnant with my daughter, who is now six years old. I went on to have a healthy daughter and a healthy son. My daughter has the trait, but my son does not. That shows how sickle cell can affect anybody.

Reading through some of the failings in Evan’s care—or lack of care—made me, as my late mother’s principal carer, remember some of the issues we encountered in the 1990s. As a young child, I had to learn about diamorphine, co-codamol, penicillin, folic acid and the large variety of painkillers that sickle cell patients have to take. I knew how important it was for my mum to have access to oxygen when she had shortness of breath, and to hear that Evan had to call 999 from his hospital bed to get oxygen, in 2019, and to see sickle cell patients failed so badly, breaks my heart.

My mum had two oxygen units at home; that is how severe her sickle cell was. I know that for many sickle cell patients this time of year is so difficult and that they have to make sure that they are wrapped up warm because, once they start getting cold, that pain gets into their bones. I spent many nights rubbing my mum’s legs and back, trying to help her relieve the pain. I know how important it is to make sure that when the ambulance arrives, the symptoms are properly outlined so that when she arrives at A&E she is prescribed with the right drugs, not paracetamol.

I know how to describe the searing pain that sickle cell patients face when they are going through a crisis, with doctors and some nurses looking at them with a blank expression because they do not understand. My mum used to describe that pain to me as someone chiselling at her knee, her bones and her joints. That is why patients need that strong pain medication, not because they are addicted to painkillers. Calling sickle cell patients addicts is totally wrong.

I know how important it is to ensure there is access to good quality housing and that patients who suffer from sickle cell have time off for appointments. I know how timely it was—a matter of life and death—that my mum got the blood transfusions she needed. This 21-year-old boy was failed. With the right level of care and support, sickle patients can lead a fulfilling life. My mum went on to have three healthy children—I am one of three girls—and thankfully, she saw her granddaughter before she died in 2015, when she was 60. Evan will never have that chance. He will not have a chance to start a family, his parents will not have a chance to see their grandchildren, and he will not have a chance to fulfil his life ambitions. Why? Because he was failed by the doctors and nurses who should have helped him. That area has a high prevalence of sickle cell patients, so why did they not know what to do? Those doctors and nurses should be caring for sickle cell patients, regardless of their race.

The APPG’s report highlights the many failings that took place. I will not go into it, as many Members have highlighted it, but it is important that we listen to its clear recommendations. The fact is that our communities, not just in London but right across the UK, are becoming more diverse, and we have to make sure that the people going into the health system now understand this disease. We are going to see more diverse communities, and this is not just about black, Asian and minority ethnic people in London, but about BAME people right across the country. Our population will continue to be diverse, which is something we should celebrate, but those people will be scared, not wanting to move to and live in areas where this disease is not understood. That understanding existed at King’s College Hospital where my mum was cared for, and at Guy’s and St Thomas’ in my constituency now, but there were times when my mum would be scared to visit family members in other parts of the country because she did not know whether, if she came into a crisis, she would be understood if she had to go into hospital.

Sickle cell patients should not be scared to travel and leave their areas, but basic things that should be available to everybody are being denied them. I thought the days of patients not being believed about their pain threshold—being told that they should come back, or that they should go and buy paracetamol over the counter—were over, but all those things seem to be happening now, so this issue is really important. I hope that the Minister will respond to the critical recommendations in this report with a clear action plan. No one should be failed in the way that Evan has been failed. No one should have to die because they suffer from sickle cell.