International Thalassaemia Day

I will call Bambos Charalambous to move the motion and then the Minister to respond. There will not be an opportunity for the Member in charge to wind up, as is the convention in 30-minute debates.

I beg to move,

That this House has considered International Thalassaemia Day 2022.

It is a pleasure to serve under your chairmanship, Mr Hosie.

International Thalassaemia Day is on 8 May, and this year’s message is “Be Aware. Share. Care.” The first part of the message is about raising awareness, so what is thalassaemia? Thalassaemias are inherited blood disorders that lower, alter or stop the production of haemoglobin in the blood. That leads to anaemia, which might be severe or life-threatening if not managed appropriately. There are several types of thalassaemia, depending on the severity of the mutation inherited. The most severe type is beta thalassaemia major, or transfusion-dependent thalassaemia, followed by beta thalassaemia intermedia and haemoglobin H disease.

Those living with transfusion-dependent thalassaemia receive blood transfusions every three weeks for life and daily iron chelation therapy. All patients develop secondary conditions and complications due to thalassaemia and iron overload. Sadly, they develop conditions such as diabetes, heart failure, osteoporosis and liver failure. Patients therefore have to spend a lot of time in hospital, whether it is for blood transfusions for thalassemia, or for the treatment and monitoring of secondary conditions.

Thalassaemia is not transmitted by transfusion, infection, environmental conditions or other factors, but is recessively inherited. It is more prevalent in individuals with Caribbean, South American, African, Mediterranean, south Asian, south-east Asian and middle eastern ancestry. Due to migration over centuries, it is found throughout the world, and it is estimated that there are 100 million people worldwide with a thalassaemia trait who are asymptomatic.

The prevalence of thalassaemia varies across different regions in the UK. Data published in 2020 by the National Haemoglobinopathy Registry—the NHR—indicates that there were more than 900 people living with beta thalassaemia major in the UK, 238 living with beta thalassaemia intermedia, 280 with beta thalassaemia/Hb E disease, and 300 with haemoglobin H disease.

The majority of patients with thalassaemia in the UK come from a British Pakistani or British Asian community. Each year, around 20 to 30 couples in the UK are identified as being at high risk of having a baby with a form of thalassaemia. My constituency of Enfield, Southgate has the highest number of people with thalassaemia in the UK and is home to the UK Thalassaemia Society, which campaigns for greater awareness and better health outcomes for people with thalassaemia. It has also given me advice and shared its findings for this debate.

The second part of the message for International Thalassaemia Day is about sharing—sharing essential information and knowledge to support the best health and social care outcomes for people with thalassaemia. The Department of Health and Social Care published its UK rare diseases framework last year, which acknowledged a number of challenges and set out the Government’s four priorities, which include increasing awareness of rare diseases among healthcare professionals, better co-ordination of care, and improving access to specialist care treatments and drugs, all of which I and the thalassaemia community very much support.

I am grateful to my hon. Friend for the speech he is making. On care, I do not know if he has had a chance to read the report from the sickle cell and thalassaemia all-party parliamentary group entitled, “No One’s Listening”. Sickle cell is not exactly the same thing as thalassaemia. There are differences, but there are similarities too in people’s experiences. Does he share my hope that that report will serve as a turning point to win a resolve for better treatment and greater understanding of these conditions, all the way from the Department of Health and Social Care through to the decision makers in the NHS?

My right hon. Friend makes an excellent point. I am aware of the report and have read it. He is absolutely right that much more needs to be done to ensure that people with thalassaemia, sickle cell and other rare diseases get the treatment they need. It is also about better training for health professionals to identify the symptoms of thalassaemia, sickle cell and other such conditions, so that people with thalassaemia are not disadvantaged when they come into contact with health professionals for the first time.

According to the UK Thalassaemia Society, the experience of their members is that the UK’s thalassaemia services are under-resourced, underdeveloped and understaffed, even compared with the treatment received by those with other blood disorders. Part of the work that the UK Thalassaemia Society has been involved in over several years is to review sickle cell and thalassaemia units throughout the country and all aspects that make up the patient pathway, from emergency care to in-patient and out-patient services. There appears to be evidence of health inequalities between the treatment of patients with thalassaemia and patients with other conditions.

As we know, thalassaemia particularly impacts specific ethnic groups, such as the British Asian population in the UK, and patients have reported to the UK Thalassaemia Society that they often feel that their ethnicity is linked to below standard treatment, and they have on occasion reported distressing instances of overt racism in connection with their treatment. That has sometimes severely impacted patients’ mental health, with patients describing feeling defeated and, in the worst instances, not wanting to live any more.

The UKTS has found that patients and families in some cases are afraid to talk to the managers and nurses involved about the instances described as they are fearful that they will receive worse treatment and be stereotyped further. As a result, they have chosen to suffer in silence. That is obviously extremely concerning, and I will happily share more information about that with the Minister outside the debate. I am sure that, like me, the Minister will find it entirely unacceptable that the ethnicity of patients in any way affects treatment or, in the worst cases, leads to deeply offensive racism.

It is a pleasure to serve under your chairmanship, Mr Hosie.

I thank the hon. Member for Enfield, Southgate (Bambos Charalambous) for securing today’s debate so efficiently ahead of International Thalassaemia Day on 8 May—we may well be prorogued by then, so it is a timely debate. Let me take the opportunity to thank him for all his work to champion the community as chair of the all-party parliamentary group for thalassaemia. I understand that the UK Thalassaemia Society is based in his constituency, and I am sure it is thankful for all his help and support.

Like sickle cell—I note the right hon. Member for Wolverhampton South East (Mr McFadden) is here—thalassaemia is a blood disorder that affects ethnic minority communities in the UK. It is right that the hon. Member for Enfield, Southgate raises the inequalities and inconsistencies around services that people with thalassaemia face. We are determined to address some of the long-standing issues in many areas.

We now resume the suspended debate. I call the Minister.

To go back to where we were, the Government are determined to address long-standing health disparities, particularly for those with thalassaemia. The NHS Race and Health Observatory was established just over a year ago with a remit to tackle some of the issues that minority communities face, particularly in health inequalities. Last year, the Government launched the Office for Health Improvement and Disparities, or OHID, which is doing huge amounts of work in these areas.

Health features quite heavily in the levelling-up White Paper. We want to reduce the gap in life expectancy between the areas with the highest and lowest, and by 2035 we want life expectancy to have risen by five years. Tackling the issues raised is key to that, particularly for the groups most at risk. I am mindful that the right hon. Member for Wolverhampton South East raised the “No One’s Listening” report, which features issues that those with thalassaemia face—the lack of understanding of the condition among healthcare staff and the treatment that patients need to receive. Those receiving blood transfusions might look well compared with a typical patient receiving a blood transfusion, but a three-weekly blood transfusion for life is very difficult even if things go smoothly. I want to reassure the right hon. Gentleman that we are trying to improve the experience of those with thalassaemia in a number of areas.

In 2019, NHS England concluded the review of haemoglobinopathy services, which resulted in the development of the new model that we now have, based on haemoglobinopathy co-ordinating centres and the national panel. That brings specialist services together to improve the experience of those using the services, and addresses health inequalities and improves outcomes for those with haemoglobinopathies, which includes thalassaemia patients.

To touch on thalassaemia in particular, four specific centres, alongside 10 sickle cell centres, have been commissioned to provide clinical expertise. We hope that even if patients cannot access those, the experience and good practice will ripple out across the country and improve the service and experience for patients and improve standards of care.