International Thalassaemia Day

Pat McFadden Excerpts

Wednesday 27th April 2022 Westminster Hall

[Bambos Charalambous (Enfield, Southgate) (Lab)]

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 want to focus on the last point about improving access to specialist care treatments and drugs. Thalassaemia is a rare disease and there are very few treatments for the condition. Some gene therapies have been developed, but have often not been able to progress beyond the National Institute for Health and Care Excellence’s criteria because either the formula for quality-adjusted life years is loaded against people with rare diseases or there is a smaller sample of people upon whom the gene therapy trials have been conducted. That is primarily because people with rare diseases are often few in number, and that limits who the therapy can be trialled on.

I note that NICE has done its methods and processes review, but I ask the Minister to ensure that the highly specialised technology and standard technology appraisal pathways are both fit for purpose for people with rare diseases, and that the uncertainty of cost effectiveness due to small population sizes is a serious consideration for NICE in assessing the appraisal of new gene-therapy technologies. Gene therapy and other technologies for people with rare diseases are literally a matter of life and death, and much more work needs to be done by the Government to ensure that people with rare diseases are not disadvantaged by the bureaucratic processes that fail to take into account the unique nature and impact of rare diseases on those who have to live with them.

The final part of the message is about care. This is about the experience of people with thalassaemia when receiving healthcare. I have met a number of people with thalassaemia who have shared their experiences with me. They require regular blood transfusions, and they told me about their pain and suffering following transfusions and how debilitating that can be. I have also read testimonies of people with thalassaemia who have experienced differing levels of treatment by health professionals. Because the condition tends to be extremely specific to a particular ethnic group in the UK and there are very small numbers of patients, the UKTS has found a huge disparity in services throughout the country with regard to the accessibility of thalassaemia care.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

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?

Sickle Cell Treatment

Pat McFadden Excerpts

Wednesday 8th December 2021 Westminster Hall

[Mrs Maria Miller (in the Chair)]

Before we begin, I remind Members that they are expected to wear face coverings when they are not speaking in the debate, in line with current guidance. I remind Members that they are asked by the House to have lateral flow tests twice a week. Please make sure that you give members of staff and other people lots of space when you are leaving or coming into the room. I expect that there will be a Division at around 3 o’clock, and I am advised that there could be up to four votes. If the Division bell rings, I will remind hon. Members what to do, but people who are speaking at around that time should bear that in mind, so that it does not freak you out—sorry, that is probably not parliamentary language—or catch you unawares.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

I beg to move,

That this House has considered the treatment of sickle cell.

Thank you for chairing our proceedings, Mrs Miller. I am very pleased to open this debate. I chair the sickle cell and thalassaemia all-party parliamentary group, which works for a better understanding of sickle cell and better treatment for those living with the condition. I am enormously grateful to all hon. Members who have supported the APPG’s work, including our late colleague Sir David Amess, who was one of our officers. I am also grateful to the Sickle Cell Society, which provides the secretariat function for the APPG. I also thank Parliament’s digital engagement unit, and the hundreds of individuals from around the country who have emailed me in advance of today’s debate.

The focus of our debate is the APPG’s recent report, “No one’s listening”, which has a number of findings and recommendations in relation to the care of people with sickle cell. The trigger for our report was the tragic and avoidable death of Evan Nathan Smith in North Middlesex University Hospital in 2019. The coroner’s report into Evan’s death, published in April of this year, found that he would not have died if medical staff had recognised his symptoms and treated him sooner. The report pointed to a

“lack of understanding of sickle cell disease in the medical and nursing staff looking after Mr Smith”

and

“a failure to appreciate the significance of those symptoms by those looking after Mr Smith at the time.”

Evan Smith was just 21 years old; he had his whole life in front of him. His death is not the only one in which a lack of understanding of sickle cell and mistakes in treatment have been contributory causes.

[Catherine West (Hornsey and Wood Green) (Lab)]

I thank my right hon. Friend, my hon. Friend the Member for Edmonton (Kate Osamor) and all the other Members who have done a lot on this topic in the House. Despite this being a long-running disease, we have not paid enough attention to it at an institutional level, be that in primary or secondary care. That needs urgent redress.

--- Later in debate ---

[Mr McFadden]

I quite agree with my hon. Friend, and our report goes into many recommendations that could improve care. Indeed, it is a call to action; it is a call to arms. Following Evan’s death, the deaths of others and the many near misses involving sickle cell patients, we wanted the report to set out the changes that are needed to stop this story from repeating itself over and over again.

Sickle cell affects about 15,000 people in the UK, with many more carrying a trait. Patients with the condition experience periodic crises—bouts of intense, severe pain that sometimes require hospitalisation. The crises are treated with strong pain relief, and sometimes blood transfusions, and over time they can result in organ damage, an increased risk of stroke, other associated conditions and even early death. It is therefore common among sickle cell patients to have to go to hospital regularly, to present at A&E and to be admitted on to wards. This is an important point. For sickle cell patients, contact with the healthcare system or admission to hospital is not a one-off; it is a lifelong part of living with the condition.

To prepare our report, we took evidence in three oral evidence sessions in June this year. We heard from patients, clinicians and policy makers. We heard from Evan Smith’s parents, Betty and Charles, who spoke with so much dignity about the loss of their son and their determination to make sure that other families do not have to go through what they have been through. We received over 100 written submissions and, taken together, this is the most comprehensive report on sickle cell care that the APPG has ever produced.

[Marsha De Cordova (Battersea) (Lab)]

I congratulate my right hon. Friend on his leadership on and commitment to this issue. The report that his APPG has produced has shone a light on some of the challenges faced by people living with sickle cell—whether it is around some of the negative attitudes, the lack of awareness and understanding, or, most importantly, patient care. Does he agree that tackling this issue and the multiple health inequalities that exist will require significant investment and resource from the Government, and an acknowledgement of the structural racism that exists within the health setting?

[Mr McFadden]

My hon. Friend makes some very strong points, and I will discuss some of them, including the question of race.

Since the report’s publication, I have continued to receive emails from sickle cell patients all around the country that confirm the report’s findings, and I want to put on the record my gratitude to each and every person who has taken the trouble to write to me, whether it was just after the report was published or in advance of today’s debate.

Let me set out the main findings of the report for the House. Let us begin with a positive: we found a good level of trust among sickle cell patients in the specialist haematology departments of hospitals that look after them on a long-term basis. We found clinicians passionately committed to better treatment and honest enough to tell us when that good treatment was not there. We found that where there is a good level of understanding and knowledge, sickle cell patients are generally well treated and well looked after, but we also found a huge gulf between the good level of confidence and trust in the specialist parts of the system, and treatment in the more generalised parts of the system—specifically A&E and general wards.

Our key findings include the unacceptable variability of treatment, depending on where someone lives or who happens to be on duty at the time; patients having to battle for the pain relief to which they are entitled; and protocols on pain relief—for example, that it be administered within 30 minutes of arrival—being regularly and repeatedly ignored or not being implemented. Witnesses told us of waiting for hours in excruciating pain. Some clinicians spoke of adherence to the pain relief guidelines within their hospital being as low as just 20% or 30%. There is a lack of compliance with care plans that have been agreed for individual patients, including with the hospital where a patient has turned up, and people have been told, “That doesn’t apply here.”

We found a dangerous lack of communication between the general and specialist parts of the system. In Evan Smith’s case, he had been in the hospital for over two days before the haematology unit even knew he had been admitted. That finding was described as “shocking” by one haematologist who gave evidence to the group. Such delays can contribute to mistakes, with the most terrible consequences. As well as deaths, we heard about a number of near misses where care had gone badly wrong and the patient had still survived.

There is a lack of awareness of the condition and a lack of understanding about how to respond to a sickle cell crisis among some NHS staff. Everyone in the healthcare system knows the key symptoms of a heart attack or a stroke, and how to respond to them. With sickle cell, however, the patient experience is often one of being caught in a perpetual loop of trying to teach staff about what is happening to them and what treatment they need, often at the time that they are experiencing excruciating pain.

[Catherine West]

I thank my right hon. Friend for giving way a second time; he is being very generous. Does he agree that that lack of awareness goes all the way through to the research community, whereby sickle cell is one of the most under-researched diseases, despite the fact that research into it has many different and interesting applications through its links to malaria and all sorts of other diseases, and that there is simply not enough research funding going into understanding this disease?

[Mr McFadden]

I very much agree with my hon. Friend. Indeed, the next finding that I was going to cite is a lack of research and innovation in treatment. There has only been one new drug approved in the UK for sickle cell treatment in decades and it was approved just before our report was published.

For each of the findings, we made recommendations: about training; about compliance with clinical guidelines; about reviews of sickle cell treatment in secondary care; about communications change; very importantly, about a stronger voice for patients in all of this; and in many other areas, too.

Underlying all those individual findings and recommendations are some key overarching themes. First of all, the experiences that I have described have contributed to a damaging loss of trust among sickle cell patients in the system that is there to help them. Some patients told us that they avoided going to hospital at all costs, no matter how serious their crisis, because they found the whole experience so exhausting and debilitating, or, as one woman put it,

“to avoid the mental strain of another battle...when she does not have the energy to advocate for herself”.

It cannot be right that people who need help have so little trust that they do not seek that help from the very system of care that is supposed to be there for them.

Secondly, there is the unavoidable question of race. Sickle cell is a condition that predominantly, but not exclusively, affects black people. Many patients told us of being treated with suspicion when they sought treatment, being regarded as troublesome by staff, being thought of as drug-seekers, and encountering negative and sometimes even hostile attitudes.

The principle of racial equality in healthcare is fundamental. No one is seeking to put one group of people above another, but we want to see equality in healthcare treatment and right now with sickle cell we do not have that. That situation is completely unacceptable and, following this report, it must be addressed.

Thirdly, the findings that we cite in our report are not new; these things have been happening for a long, long time. They have been raised time and again, and the fact that this situation is continuing has led to a great deal of anger and frustration among those living with sickle cell and their families.

Yet, even though all of those things are true, this might—just might—be a moment of opportunity. Why do I say that? Soon after the Secretary of State for Health and Social Care was appointed, he spoke about the “disease of disparity” and about how the covid pandemic had exposed a number of long-standing health inequalities, including racial ones. I welcome the Secretary of State’s commitment to address these inequalities and his warm welcome for our report on the day it was published. Perhaps this is a moment when we are more aware of health inequalities than we would have been before the pandemic; maybe this period can be a turning point for change.

There is no need for this to be a partisan issue. No one is pretending that the findings in our report only began in recent years or under one Government. These things have been there for a long time. However, perhaps the experience of the pandemic will give us a new-found resolve; maybe it will mean that this time people listen.

From the Secretary of State and the Department to the NHS in every part of the United Kingdom, we want this report to mark a moment of change in the treatment of sickle cell. We want to ensure that the issues raised in the report are addressed once and for all, and that training is improved so that staff throughout the system understand, and have a knowledge of, the condition. We want to ensure that care plans and pain relief protocols are adhered to by both the generalist and the specialist parts of the system. We want to step up research and innovation in treatment and restore trust among sickle cell patients. Most of all, we want to ensure that there is equal health treatment for everyone, regardless of the colour of their skin. That is not too much to ask for, but we do not have it at present.

Today I appeal to the Minister, the Secretary of State, my own Front-Bench team and the other parties represented here to become our allies in this and to work with us. Please do not let this be a missed opportunity. Let us collectively resolve that we will not have me, or another chair of the APPG, standing here in a few years’ time making exactly the same points as I am making today. Let us make sure that this time people do listen, that we act on these long-standing failures in the care of people with sickle cell and that we improve healthcare for people with this condition once and for all.

[Mrs Maria Miller (in the Chair)]

I remind hon. Members that if they want to speak in the debate, they should indicate it by rising in the normal way. I intend to call the Front-Bench spokespeople and the Minister just over 30 minutes before the end of the debate, whenever that falls—I will clarify that if there is a vote. I will not put in a time limit; if everybody is respectful of each other’s time, everybody should be able to speak.

--- Later in debate ---

[Mr McFadden]

I thank everybody who has spoken and contributed to this afternoon’s debate. It might be unfair to pick people out, but I want to pick out my hon. Friend the Member for Streatham (Bell Ribeiro-Addy), who was a witness when we took evidence for the inquiry, and my hon. Friend the Member for Vauxhall (Florence Eshalomi), who spoke so movingly and powerfully about her mum. To echo the words of my hon. Friend the Member for Streatham, I know that her mum would be really proud of her for what she has said in this debate.

I am grateful to the Minister for her response and the spirit in which she has listened to the debate. It is good to hear about the specialist units, the expert who has been appointed, and the other things that she highlighted. It is good to hear about all of that. However, the test will be in the lived experience of sickle cell patients themselves. One problem highlighted in the debate was that often the protocols are there—the 30-minute guidance is there and the care plans agreed with individual patients are there—but in the day-to-day experience they are not being adhered to, so a part of the battle is to make sure that things already there are applied properly. Anything that the Minister and the Department can do to reinforce that is welcome.

I make a final appeal to the Minister to make the report a moment for change, not just a debate that is here today, gone tomorrow. I appeal to her to go back to the Department, gather the officials, call in the different key parts of the NHS and tell them: “This time we are going to listen. This time we are going to make a difference, and we are going to change things for good for people living in this country with sickle cell.”

Question put and agreed to.

Resolved,

That this House has considered the treatment of sickle cell.

Covid-19 Update

Pat McFadden Excerpts

Friday 26th November 2021 Commons Chamber

[Sajid Javid]

My hon. Friend is right to point to the continued importance of the vaccination programme. There are some 5 million people in the UK who have not received a single shot of any type of vaccine. He is right to talk about the importance of the delivery methods of a vaccine and, as he has mentioned, there are trials of nasal vaccines. However, I am sure he will understand that until such vaccines are approved by our independent regulator, we will not be able to pursue them.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

I thank the Secretary of State, the NHS and everyone responsible for the booster programme that is helping to protect us as we enter the winter months, but is not one of the lessons of the news he has announced today that, if we do not tackle the enormous vaccine inequality around the world, we will continue to be exposed to new variants of this type? In Africa, for example, just 6.6% of the population have been vaccinated. Of course, it is every Government’s first duty to protect its own people—everyone understands that—but does he agree that the United Kingdom and other rich countries in the world must do more to ensure that surplus doses that we do not need are distributed to countries that do need them, rather than not being used and ultimately, in some cases, destroyed?

[Sajid Javid]

I very much agree with every word the right hon. Gentleman says, especially about surplus vaccines. That is exactly what we have done: whenever we have identified vaccines we may not need, we have offered them either bilaterally or through the COVID-19 Vaccines Global Access, or COVAX, programme. We will continue to play our role but, importantly, we will also continue to urge our international partners to do all they can as well.

Covid-19 Update

Pat McFadden Excerpts

Monday 15th November 2021 Commons Chamber

[Sajid Javid]

As always, my right hon. Friend makes an important point. I will not go through the arguments why vaccination, whether of social care or NHS workers, is so important, although of course patient safety is central to that. However, he is right to ask what can be done about the pressures on the social care system, and to point to the important question of discharge from hospitals, among other issues. We are giving record amounts of support to the adult social care sector. The funding is a huge part of that—not only funding going into the sector to build capacity, but funding going to the NHS through the discharge fund, which is hundreds of millions of pounds it can use to support early discharge into care homes.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

When the Secretary of State was appointed, he talked about tackling the “disease of disparity” and the inequalities in healthcare that had been exposed by the covid pandemic. Today, the sickle cell and thalassaemia all-party parliamentary group, which I chair, has published a major report on the care of people with sickle cell. The report exposes major inequalities and disparities, leading to people having to fight for the pain relief to which they are entitled, constantly having to explain their condition and developing a degree of mistrust in the healthcare system that is there to help them. We will send the Secretary of State a copy. Will he agree to meet me and representatives of the Sickle Cell Society to discuss the report’s findings?

[Sajid Javid]

Yes; I would be very happy to have that meeting with the right hon. Gentleman, because this is an important issue. While I have not yet read the entire report, I read the summary this morning, and it raises some important issues. If we are to properly tackle the disparities we see in this country, it is important that we look at all the proper research that has been done on them.

Covid-19 Update

Pat McFadden Excerpts

Tuesday 20th October 2020 Commons Chamber

[Matt Hancock]

Yes, we have been working very closely with the Tees Valley. The level 2 restrictions there were not something that we put into place lightly, but we followed the data. We will continue to follow the data and take the action that is needed—but only the action that is needed—and to engage with my hon. Friend and with the Mayor of Tees Valley, who is rising above party politics to do the right thing for the Tees Valley. The point that I would make to my hon. Friend, in addition to the points that he made, is that the impact on mental health is undoubtedly worse if the virus gets out of control, even though the measures that are taken are difficult ones. The Royal College of Psychiatrists has been very clear that the best thing for mental health is for us to keep the virus under control, although of course we need to mitigate the consequences that flow from the measures we sometimes have to take.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

Today marks a low point in the handling of this situation. Instead of reuniting people behind their approach, the Government have imposed this decision, leaving a bitter taste. There are other decisions still to come, and other regions are watching what has happened today, including my own in the west midlands. Can the Secretary of State assure the House that, as significant economic support is withdrawn at the end of this month, any decision on whether national restrictions are required will not be taken because that is cheaper and a means of avoiding adequate support for the businesses and workers concerned, because if that is the case, the public health measures and the economic measures will be pulling in two different directions?

Covid-19

Pat McFadden Excerpts

Monday 16th March 2020 Commons Chamber

[Matt Hancock]

On the latter point, the chief medical officer has set out today that immunity is built up by having had this virus. That evidence is constantly being kept under review, but immunity does appear to be built up. On the testing point, as I said to the right hon. Member for Normanton, Pontefract and Castleford (Yvette Cooper), of course we want tests to be available for everyone. Our goal is to beat this virus. We want to make sure that all our frontline medical staff can have the testing and that everyone in the community can have those tests, but where only a limited number of tests are available we have to use them to save life. I am working as fast as I can to increase the number.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

The Secretary of State said that this was a national effort and he is right, but it is more than that; this is a global crisis that has seen different approaches taken in different countries. Does he not accept that we need stronger, co-ordinated, global leadership, both on the health front and on the economic front, to get the best possible response to this global crisis?

[Matt Hancock]

I half agree with the right hon. Gentleman, and that is because I think that international co-ordination is important—I have been participating in regular G7 calls, as have the Prime Minister and the Chancellor of the Exchequer—but different countries are also in different places on the curve. For instance, we have introduced measures such as these earlier on the curve than similar countries, such as France and Germany.

Coronavirus

Pat McFadden Excerpts

Wednesday 11th March 2020 Commons Chamber

[Matt Hancock]

There are different types of social distancing. There is what is essentially case isolation, which is where somebody has symptoms and we are asking them to self-isolate. At the moment, if somebody has moderate or heavy symptoms, they should self-isolate, and we have talked about going, at the right time, to self-isolation—staying at home—for people with mild symptoms. There is also, of course, the need to ensure that older people and vulnerable people, for whom this virus has a bigger impact, can get the right advice on self-isolating, and that is something we are working on.

Here the timing really is critical, because the evidence of past epidemics and past crises of this nature shows that people do tire of these sorts of social distancing measures, so if we start them too early, they lose their effect and actually it is worse. The social science and the behavioural science are a very important part of the scientific advice that we rely on.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

One of the questions in the public’s mind is the degree of resistance acquired by those who have contracted the virus and then recovered. I appreciate that this is more a question for his medical and scientific advisers than directly for him, but could the Secretary of State give us any information on the degree of resistance acquired by those who have been through the virus and come out the other side?

[Matt Hancock]

I asked the chief medical officer this precise question this morning, so I can report to the right hon. Member what the chief medical officer says is the answer to this question. The degree of resistance is deemed to be very high, especially in the first year or more afterwards, for similar coronaviruses, and is therefore likely to be very high for this one. It is good news that it is highly likely that once people have got it and recovered, they are going to be okay. That is obviously good news for people who have had it, including our hon. Friend the Member for Mid Bedfordshire.