Tobacco and Vapes Bill (Third sitting)

Bambos Charalambous Excerpts

Committee stage
Wednesday 1st May 2024 Public Bill Committees

[The Chair]

I inform Committee members that we have 14 minutes to go and three people who have not yet spoken and would like to. I want to bring in the Minister and the shadow Minister at the end. I notice that there is huge unanimity among our panel members. Could I also ask you to be brief and perhaps get one of your number to answer a question so that we get everybody in? Bambos Charalambous is next.

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

Q Sir Chris, you mentioned tobacco-related diseases. I want to focus on the impact that that has on the NHS. How would the Bill help the NHS in the short term and then in the long term?

Professor Sir Chris Whitty: In the interests of brevity—the medical director of the NHS is one of your next witnesses—there would be an immediate effect on the NHS because things like asthma attacks in children would be affected almost immediately. Over time there will be a growing positive impact on the NHS as people do not prematurely become unwell with chronic diseases that are extremely difficult to treat and consume enormous resources, in addition to the much more important thing of the extraordinary impact on individuals and their families, their social life, their work life and so on. So there will be a positive and growing impact. If you look forward 30, 40, 50 years, the impact of the Bill on the NHS will be substantial, but we will start to see the effects rapidly, particularly at the paediatric end of the spectrum.

[Trudy Harrison (Copeland) (Con)]

Q Bearing in mind what the Chair just said about being brief, can the panel explain the stages of addiction—the physiological, psychological, biological impacts of addiction—and perhaps comment on the frequently heard statement that this is a free country, people should have choice and then use discipline?

Professor Sir Chris Whitty: I will reiterate my point and then hand over to Sir Frank for a longer answer. Cigarettes are a product designed to take choice away. That is the whole basis of the industry. If you are pro-choice you are anti-cigarette—absolutely, straightforwardly, no question.

Sir Francis Atherton: As I have said, nicotine is an incredibly addictive substance and it does not take long to become addicted, so it is not really a stage; it is almost instantaneous. People smoke a few cigarettes and the nicotine addiction kicks in. Obviously, it varies from person to person, but by and large it is highly addictive to young people. The younger you start, the more addictive it is, but it is addictive across the whole of the lifecycle, so nobody is immune to that addiction. Breaking that cycle of addiction and getting out of it gets you into psychological dependencies and repeated attempts to quit—the things that many smokers have been through, which cost them so much time, energy and effort, in terms of money and their personal effort and wellbeing. That is all I can say about the status of addiction. Was there anything more specific that you wanted to know?

Tobacco and Vapes Bill (First sitting)

Bambos Charalambous Excerpts

Committee stage
Tuesday 30th April 2024 Public Bill Committees

[Bob Blackman (Harrow East) (Con)]

I chair the all-party parliamentary group on smoking and health.

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

I do not know whether it is an actual declaration, but I did the Cancer Research 10k fun run in February—the winter run.

[The Chair]

That is more of a boast than a declaration of interest.

Hospice Funding

Bambos Charalambous Excerpts

Monday 22nd April 2024 Commons Chamber

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

I thank the hon. Members for Hastings and Rye (Sally-Ann Hart) and for Darlington (Peter Gibson) for securing this important debate.

Hospices do incredible work. In communities across the country, they hundreds of thousands of people every year with essential palliative and end of life care. The services that hospices deliver are absolutely crucial to improving the quality of life for people in their final weeks and days, helping to provide a dignified, comfortable and compassionate end of life. That support is vital not just to people at the end of their lives, but to their family and friends. End of life care impacts not just the patient but all their loved ones, and the specialist support that hospices provide patients in their final stages of life, and their families who are watching them pass away without suffering or pain, is immeasurable. It is why hospices are so important.

In my Enfield, Southgate constituency, we are lucky to have a facility of the incredible North London Hospice, which has been caring for people since 1984. Its health and wellbeing centre in Barrowell Green helps to enable the best of life at the end of life for people across the boroughs of Enfield, Haringey and Barnet, providing tailored care, including physical, emotional, spiritual, wellbeing and bereavement support for patients, friends, carers and loved ones. I must also mention those in the wonderful North London Hospice photography club, who support each other and take amazing pictures, which they sell to raise funds for the hospice.

I remember hearing from a constituent of mine, Joy Watkins, who was receiving care and support at the hospice. Joy has sadly now passed away, but her words about the importance of the hospice and the care that she received were incredibly moving. Joy spoke about going to something called a death café—an informal space for people to talk about end of life, share their concerns and listen of others express their thoughts, hopes and experiences of death. She said that going to the death café enabled her to make choices about the end of her life. She could make choices about who to spend time with and about the finances that she would make use of at the end of her life. It transformed the way in which she viewed and handled the end of her life.

The way in which we talk about and approach dying matters, and Joy’s words have really stuck with me. Indeed, they were one of the reasons I introduced my private Member’s Bill—the Terminal Illness (Provision of Palliative Care and Support for Carers) Bill—back in 2018. Next month, Hospice UK will be promoting its campaign for Dying Matters Awareness Week, and I look forward to supporting its efforts on that important initiative. Honest and timely conversations about death and dying are essential to good end of life care, but barriers including lack of confidence, taboos around discussing death, and confusion about who should be having these conversations all too often mean that patients, carers and families may not understand what is happening or get all the information and support that they need. That is where hospices and their brilliant staff come in. More recently, a close family member of mine received support from North London Hospice, and although Gabby sadly passed away, I am so grateful for the hospice’s specialist care.

Yesterday I and about a dozen hon. Members ran the London marathon. I was proud to do so to raise money for North London Hospice. When pounding the streets of London in such a wonderful festival of community yesterday, I was struck by how many runners were, like me, raising money for their local hospices. That demonstrates the sad reality of inadequate central funding for hospices. I have been trying to bang the drum for North London Hospice since I was first elected, and although it took me a few years to muster the courage to put on the running vest and put my knees on the line, as each year passes it feels as if the challenges facing hospices grow greater and more acute.

As we know, hospices are an integral part of our health and social care system. They work in partnership with local health and care systems, helping to reduce the pressure on our NHS by caring for patients who would otherwise be directly supported by NHS services. As a community, we are reliant on hospices—they are important parts of the communities that they serve—but they are also reliant on us for support, through fundraising and donations, because they are largely charitably funded. On average, around two thirds of adult hospice income is raised through fundraising such as charity shops and marathons, and the figure is higher for children’s hospices, which must raise around four fifths of their income.

[Munira Wilson]

On children’s hospices, Shooting Star in my constituency, which I have already mentioned, is very grateful that the Minister has committed to the children’s hospice grant for 2024-25, which comes centrally from NHS England. The problem is that that is a year-to-year commitment, which does not help hospices such as Shooting Star to plan for the long term. Does the hon. Gentleman agree that a ringfence should be placed around that funding and that it should be pegged to inflation year on year so that children’s hospices can plan properly?

[Bambos Charalambous]

The hon. Member makes an excellent point. Long-term funding is absolutely essential if hospices, particularly children’s hospices, are to be able to plan ahead.

North London Hospice is reliant on donations from the community each year to fill its £10 million funding gap, as only a small proportion of its costs are funded by the NHS. Of course, the cost of living crisis continues to eat away at people’s finances, which directly impacts on our communities’ ability to provide the vital charitable support that hospices rely on. The reality of the current state of funding is that hospices are struggling to keep up with inflation and rising costs, which is leading to services being cut. However, demand for palliative care continues to grow—for North London Hospice, it has grown at a rate of 5% year on year. The costs of running hospice services, including energy bills and the cost of paying staff a fair wage, also continue to rise rapidly.

Hospices recruit from a small pool of staff in the NHS and care sector, but they are not provided with the same Government funding to meet NHS pay levels, meaning that many hospice staff are doing the same job as their NHS colleagues but being paid less for it. As a result, Hospice UK’s figures suggest an 11% growth in payroll costs this year, which means around £130 million of additional spending that is not met by increased statutory funding. As I have mentioned, those costs are not met with additional uplifts from NHS funding or contracts, and despite a legal requirement for ICBs to commission palliative care services that meet the needs of the local population, the funding that hospices receive from ICBs varies significantly across the country and means that charitable donations make up much of their income.

[Gen Kitchen (Wellingborough) (Lab)]

As a former hospice fundraiser—it is what I did before I came here —I am grateful to the hon. Members for Hastings and Rye (Sally-Ann Hart) and for Darlington (Peter Gibson) for securing the debate. Part of the problem that I faced at first hand was that when I was going out to private companies, trusts and foundations in order to raise funds to increase pay with inflation, that was often the hardest thing to fundraise for. The ICB was never very forthcoming, particularly when we would enter into conversations with it in the year prior to the year being funded.

[Bambos Charalambous]

My hon. Friend makes an excellent point. Fundraising is hard enough; inflationary costs make it much harder for fundraisers to do their excellent job of bringing an enormous amount of money together to make sure that all our hospices are run adequately.

Many hospices, like North London Hospice, will continue to operate a deficit budget for 2024-25, with the shortfall being met from reserves. Indeed, Hospice UK estimates that the sector is on track for a £77 million collective deficit for financial year 2023-24, the worst end of year figures in around 20 years of tracking. This funding model is simply unsustainable, and will undoubtedly lead to hospices cutting back essential services for patients. The issue is becoming increasingly urgent. We need to look at how hospices are funded in this country. They provide essential support; they should not be a voluntary service that is topped up by whatever fundraising is available. An integral part of our healthcare system is reliant on charitable donations. No other services are funded in that way; it is unthinkable that it would be left up to charities to plug shortfalls in maternity services, for example, so why is end of life care reliant on the kindness of strangers? It is really worrying. We need a far more secure, long-term model of funding that protects our hospices and partners them with the wider health and care system. If we do not properly support our hospices, we are in danger of losing them.

[Martin Docherty-Hughes (West Dunbartonshire) (SNP)]

I appreciate that funding models are different across the UK, but the hon. Gentleman has raised a point that I have a bit of concern about. There are two hospices in my constituency, one of which, St Margaret of Scotland, is the largest and oldest in Scotland. The voluntary capacity on the board of management has allowed it to develop and increase its palliative care provision. Does the hon. Gentleman agree that we should maybe look at parity of esteem between the voluntary hospice sector and our different NHS structures, in order to have equity of approach and investment?

[Bambos Charalambous]

The hon. Member makes an excellent point. We need to look at what models work best for each region. I do not know about the model he talked about, but we need to look at the long-term funding of hospices, and what works best for each hospice and region.

I am pleased that today’s debate has shown the strength of feeling on this issue, and that Members have highlighted the need for greater support and funding for hospices in the UK. That point was made clearly in the excellent speech by the hon. Member for Hastings and Rye, as well as in interventions. I look forward to hearing from the Minister on the Government’s response to the challenges that have been outlined. Finally, I once again thank everyone at North London Hospice for all their amazing work in my community and beyond, and I also thank Hospice UK for all its advocacy on these issues and its excellent briefings ahead of today’s debate.

Hospice Sector: Fiscal Support and Cost of Living

Bambos Charalambous Excerpts

Thursday 2nd March 2023 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Paisley. I congratulate the hon. Member for North Ayrshire and Arran (Patricia Gibson) on securing this timely and important debate.

The work of hospices is incredible. I am lucky that North London Hospice has a facility in my constituency, as well as others in north London. The support it provides is absolutely essential, not just to people at the end of their lives, but to their family and friends. In my constituency, we have a wellbeing centre that provides therapies and counselling. We also have something called a death café, where people can talk about end of life. I was very lucky to know a constituent, Joy Watkins, who has sadly passed away now. She said that going to the death café enabled her to make choices about the end of her life. She could make choices about who to spend time with and about the finances that she would make use of at the end of her life. It transformed the way in which she handled the end of her life. The work of hospices is clearly incredible, and we need to celebrate it.

Hospices are very much part of the community. As the hon. Lady said, they rely on fundraising for much of their support. The statutory support from the clinical commissioning groups can range from 1% to 50%, and the rest of it has to be found through fundraising. Marie Curie said in its briefing that as much as 80% of hospices’ finances come from fundraising efforts such as marathon runs.

I do not know whether many people read in yesterday’s newspapers that a 13-year-old boy, Max Woosey, has raised over £700,000 for his hospice in north Devon by camping outside in a tent for three years. People make those superhuman efforts because they care so much about the services provided by hospices.

As has been the case for many charities, hospices have been hit by the cost of living crisis. People are tightening their belts because they are struggling to make ends meet, which has an impact on the amount of money raised by charities. It hits them hard because there is less money to go around, so they have to make savings. Hospices are different from most charities, however, because they have no choice about the support they provide. People are there to receive end-of-life care, and hospices have to meet their energy costs to provide that care. They also have to provide support through the specially trained hospice staff who assist people at the end of life. Clearly, hospices do not have any choice about whether they spend their money on energy bills, so they are in desperate need of support.

In my constituency, North London Hospice now faces an energy bill of more than £460,000 in 2023-24—an increase of £280,000. That is a huge amount of money, and it is more that can be bridged by any additional fundraising efforts. Although the energy bills discount scheme is welcome, it needs to be extended because, as I mentioned earlier, hospices do not have any other means of finding extra money. Fundraising is already very tight for hospices, so we need to make sure that we ask the Government for this funding. The Budget is only a couple of weeks away, and I hope that the Chancellor listens to our request.

There is also a wider argument, which I am not proposing to make today, about the funding for hospices generally. The service they provide should not just be a voluntary service that is topped up by whatever fundraising available. Hospices actually help the NHS by providing additional assistance. There should not be a postcode lottery whereby clinical commissioning groups choose to give hospices funding according to how they are prioritised in their areas. We need to look at the funding model for hospices.

Today, however, we are asking, in these very unusual and extreme circumstances, for the Chancellor to find additional money to support hospices, because it is some of our most vulnerable people who need their support. They are literally at the end of their lives, and hospices have no other way to receive funding. I urge the Minister—though it may not be up to him; it may be down to the Chancellor—to find the additional funding.

Before I close, I thank Hospice UK and Marie Curie for the excellent briefings they have provided for today’s debate. It is a shame that more Members are not present. I know that if the debate had taken place at another time, it would have been very well attended. I will leave it there, and I look forward to hearing from the Minister. I may have to leave before the end of the debate, so I apologise for that in advance, Mr Paisley.

NHS Workforce Expansion

Bambos Charalambous Excerpts

Tuesday 28th February 2023 Commons Chamber

[Wes Streeting]

I apologise for keeping my hon. Friend bobbing—the last thing the NHS needs is another patient, so I hope the exercise has been good for his joints rather than the straw that breaks that camel’s back.

My hon. Friend is absolutely right. I think cancer treatment is in many respects the canary in the coalmine, because it is an area where speed really does matter and where early detection can make a huge difference to the success of the outcomes. It is why, when we were in government, we had a cancer guarantee. By pursuing that cancer guarantee and making sure that patients received timely access to both diagnosis and treatment, the rising tide for cancer patients lifted all ships, and we saw a general improvement in the NHS, so that by the time we left government we had the lowest waiting times in history.

I am deeply anxious that within those waiting lists, which stand at a record in excess of 7 million now, will be a huge amount of undiagnosed cancer. As I know from personal experience of going to accident and emergency with something else, it is often in A&E departments that cancer is detected. I worry how many cancer patients like me will arrive at A&E, see the waiting times and walk away with a cancer undiagnosed. It certainly keeps me awake at night, and it should keep Ministers awake at night too.

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

I congratulate my hon. Friend on an excellent speech. Is he aware that Macmillan Cancer Support has today published research showing that 2022 was the year in which all national cancer targets were missed in at least one month? That is truly shocking, and it is why we need an NHS workforce plan urgently. Does he agree that it is about time the Government came forward and produced such a plan?

[Wes Streeting]

I wholeheartedly agree with my hon. Friend. Unless the NHS has the staff it needs, patients will not get the timely care they deserve. It really is as simple as that. We have a plan; the Government do not, and they are very welcome to take ours.

International Thalassaemia Day

Bambos Charalambous Excerpts

Wednesday 27th April 2022 Westminster Hall

[Stewart Hosie (in the Chair)]

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.

[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?

--- Later in debate ---

[Bambos Charalambous]

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 worth noting that thalassaemia affects many ethnicities, though predominantly those of Asian heritage, and the average life span is considerably lower in the Asian population than in the Mediterranean population. That may be for a variety of reasons; however, there is certainly worry among members of the UK Thalassaemia Society that the racial disparity they encounter may have an impact on their health outcomes. Again, I would be grateful if the Minister took that concern on board and raised it with health professionals.

I hope this debate will help raise awareness of thalassaemia and the particular difficulties that patients face. I hope the Minister will tell us how she will work to improve equal access to care and equal health outcomes for this community. How does she believe we can tackle the explicit and implicit discriminatory attitudes that still exist in healthcare settings? I thank the UK Thalassaemia Society, Genetic Alliance UK and the Royal College of Pathologists for providing me with information for the debate. I hope the Minister will take my points into consideration and re-evaluate the Government’s position on thalassaemia and rare diseases, to see what more can be done to improve health outcomes for people with thalassaemia and to raise awareness of the condition among health professionals and the wider public.

Randox Covid Contracts

Bambos Charalambous Excerpts

Wednesday 17th November 2021 Commons Chamber

[Angela Rayner]

My hon. Friend makes an important point. We have heard about this distinction from other companies and organisations that have experience in the field; they feel as though they were blocked and there was not a transparent process for them to go through. We have seen concerns about how procurement decisions were being made for companies such as Randox, with the lack of any paper trail showing that they were made properly. How is that fair? The question is very simple: what are Ministers hiding?

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

Is that not the nub of the point: the fact that Ministers are using WhatsApp messages to make contracts is a way of circumventing the procurement process, which is there to protect the probity of Government spending? That is why we should be challenging these things as firmly as we can.

[Angela Rayner]

My hon. Friend makes a good point on probity. If Ministers have nothing to hide and no rules were broken, surely they would be happy to publish the details of these meetings and the correspondence. But they have refused time and time again to do so. So today we have tabled this motion and we will put it to a vote, because the only logical conclusion is that there is something to hide—that the dodgy lobbying at the heart of this scandal has played a part in how vast sums of taxpayers’ cash have been spent.

Covid-19 Update

Bambos Charalambous Excerpts

Monday 19th April 2021 Commons Chamber

[Matt Hancock]

My hon. Friend raises an important point, and I am happy to look into it. I am also pleased that the cost of the tests that are needed for travel is coming down, and an important piece of work is under way to see how we can get that down further. Nevertheless, my hon. Friend makes a strong case for her constituent.

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

Face coverings are likely to remain a feature to protect against covid-19, but people with hidden disabilities who cannot wear such coverings will face abuse. Despite raising the matter on previous occasions, including once with the Prime Minister, and having been promised an awareness campaign, nothing has happened. Will the Secretary of State tell me when that campaign will happen?

[Matt Hancock]

Yes, an awareness campaign is under way, and I am grateful for advance notice of this question. I will write to the hon. Gentleman with the full details. He may say to me, “Sorry, Matt; more needs to be done,” in which case I will look into it, but he makes an important point on which I essentially agree with him.

UK Rare Diseases Framework

Bambos Charalambous Excerpts

Wednesday 24th March 2021 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mrs Miller. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing this important debate and on her excellent opening speech.

As chair of the all-party parliamentary group on sickle cell and thalassaemia, I know that this subject is of great interest to people with thalassaemia. I will focus my speech on one of the four high-level priorities of the framework: improved access to specialist care, treatment and medicine. People with rare diseases say that the tantalising prospect that one day there will be a cure for the rare diseases affecting them is something that gives them hope and huge motivation, and that drives them to campaign passionately for the development, and then approval, of that medicine or therapy. When it comes to assessing the effectiveness of such drugs or treatments for rare diseases, however, the approach taken by NICE leaves a lot to be desired.

Recently, NICE gave a provisional negative appraisal to a ground-breaking gene therapy treatment that would have eliminated the need for the chronic treatment of many people with a severe form of thalassaemia. One of the contentious issues with NICE’s assessment has been the inflexibility of the arbitrary discount rates. The small number of people with rare diseases means that there is often insufficient evidence available to satisfy NICE’s assessors. I note that NICE has undertaken a methods review process in which the discount rate is a key area of potential reform, which I very much welcome. Additionally, I want to ask NICE to take greater account of the testimony from patients, because only by understanding patients’ lived experience can a committee properly assess the effectiveness of a drug or treatment.

For people with rare diseases such as thalassaemia, the approval of a drug or treatment can be the difference between life and death. It is imperative that we get this right, and that means things have to change quickly. We need the implementation of an action plan for the rare diseases framework, and we need it now.

Oral Answers to Questions

Bambos Charalambous Excerpts

Tuesday 23rd February 2021 Commons Chamber

[Helen Whately]

I thank my hon. Friend for his question. I can tell him that the National Institute for Health and Care Excellence published a guideline on vitamin D for covid in December. Its expert panel supported current Government advice to take vitamin D supplements through the autumn and winter. However, there is insufficient evidence that taking vitamin D mitigates effects of covid-19. I can also say that hydroxychloroquine is not recommended or authorised for the treatment of covid outside of trials.

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

What recent assessment he has made of the effect of the covid-19 outbreak on cancer care and treatment.

[Mick Whitley (Birkenhead) (Lab)]

What recent assessment he has made of the effect of the covid-19 outbreak on cancer care and treatment.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

The tremendous efforts of our NHS cancer workforce are helping to ensure that those who need treatment can continue to access it without delay. The NHS has been clear, as have Ministers, since the beginning of the pandemic that continuation of urgent cancer care must be a priority. The NHS has established covid-secure cancer hubs, consolidated surgery, centralised triage to prioritise patients based on clinical need, and utilised the independent sector for capacity.

[Bambos Charalambous]

Staff at North Middlesex University Hospital have done an incredible job under difficult circumstances, delivering cancer care and treatment, but despite that the Government have acknowledged that more than 30,000 people are missing a diagnosis of cancer compared with 2019. With the cancer recovery plan due to expire at the end of March, can the Minister please set out her commitments to beat the backlog after March? How will a renewed cancer recovery plan help meet the ambitions for cancer care set out in the NHS long-term plan?

[Jo Churchill]

I am concerned, like the hon. Gentleman, about those who have not come forward and those who are not currently accessing treatment. I reassure him that once people do come forward, there is a speedy path to treatment. The numbers of those who are entering treatment, both on two weeks and on 31 days, is ahead of what it was at this time last year, and we are seeing enormous efforts from the cancer workforce. I am meeting this afternoon with the all-party parliamentary groups on radiotherapy and on cancer, and we will be discussing the recovery plan, which he is right goes to March. However, every single trust has been given a target to produce a plan for ongoing assessment of how it is addressing the backlog going forward.