Covid-19 Inquiry

Debate between Bambos Charalambous and Pat McFadden

Friday 19th July 2024 Commons Chamber

[Pat McFadden]

The hon. Member is right to praise the role of local government. My experience in Wolverhampton was that the council stepped up and did a fantastic job for local citizens during the pandemic. The financial position of local government is difficult; the financial position on a number of things is difficult. I am afraid the truth is that I cannot stand here and promise to write big cheques for everything. We did not say that we would do that during the election, and we will have to operate with a difficult—very difficult—economic inheritance. Everything that we do has to be underpinned by economic stability and financial responsibility. Tough as that is, I am afraid that we have seen the consequences of doing otherwise all too clearly in recent years.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

In her report, Baroness Hallett said:

“The UK government’s…pandemic strategy, from 2011, was outdated and lacked adaptability. It was virtually abandoned on its first encounter with the pandemic.”

Can my right hon. Friend give me an assurance that any future strategy will be robust and will be updated regularly?

[Pat McFadden]

One of the things that Baroness Hallett advises in her report is that every three years there is a proper exercise to test any plan and see whether it is fit for purpose. That is an important recommendation to take away and consider. It is difficult to plan for every possible risk. This is not an easy thing to do, but it is really important to try to have the best possible systems in place between the centre of Government, between the Departments and, as we have said, between local authorities and the devolved Administrations too.

International Thalassaemia Day

Debate between Bambos Charalambous and Pat McFadden

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?