Organ Donation and Transplantation Strategy

Jim Shannon Excerpts

Wednesday 23rd February 2022 Westminster Hall

[Anthony Mangnall (Totnes) (Con)]

I beg to move,

That this House has considered the organ donation and transplantation strategy.

It is a pleasure to serve under your chairmanship, Ms McVey. I thank the Backbench Business Committee for granting the opportunity to debate the important topic of the organ donation and transplantation strategy. I also thank the Minister and her departmental team for their responses to my inquiries about organ donation on behalf of my constituents. Their answers have been detailed, helpful and reassuring.

In the time I have been in this place, I have learned that Westminster Hall debates are not always used to be helpful to the Government and are often used to point out their flaws and failings. I may be guilty of having done that once or twice myself, but I want to use this debate to do three things. First, I want to congratulate the Government on the steps they have taken thus far, most notably with the Organ Donation (Deemed Consent) Act 2019. Secondly, I want to encourage further education and awareness around organ donation. Thirdly, I want to explore future steps that the Government can take in relation to organ donation and transplantation strategy.

In May 2020, the law around organ donation in England was changed to allow more people to save more lives. The Organ Donation (Deemed Consent) Act, which many hon. Members present supported, changed the law to mean that an individual agrees to become an organ donor when they die if they are over 18, have not opted out and are not in an excluded group. The Government’s legislation brought us more into line with other countries but, more importantly, the number of available organ donors increased dramatically, while the number of people opting out of the opting-in initiative only slightly increased. Pre opt-out—before 5 May 2020—the UK had 26,037,200 registrations, whereas the total UK opt-in registration was 27,594,279 on 13 February 2020. By comparison, fewer than 1.5 million people opted out before 5 May 2020, with the total number now standing at 2.3 million. These numbers show that in less than two years, we have had a sizeable increase in the number of potential organ donors, while only a small percentage of the population have chosen to opt out of the initiative.

NHS Blood and Transplant launched a public awareness campaign in April 2019 to inform the public about the prospective law change and the choices available to them. An evaluation of that campaign found that over 75% of adults in England were aware of the new system of consent. The third year of the campaign, which I believe comes to an end in March 2022, looks to encourage people to talk to their families and loved ones about organ donation and their organ donation decisions. With consent rates currently at 68% across the UK and 78.8% in the south-west, it is particularly welcome to see the Government state their ambition to increase consent levels to 80%. A 12% increase is likely to result in approximately 700 more transplants per year and countless lives saved.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for securing the debate. The hon. Member for Barnsley Central (Dan Jarvis), who is present, the former MP Geoffrey Robinson and I were part of the team that worked to get the organ transplant legislation changed. As a member of the Democratic Unionist party, I was always in favour of the opt-out. I am very pleased to say that my party saw the light and supported that line of thought. With Northern Ireland and other countries in the UK having passed legislation to adopt the choice to opt out of organ donations, does the hon. Gentleman agree that now is the time for a UK-wide strategy to ensure that no organ is lost because the system does not efficiently make the most of the connectivity between each region of the United Kingdom of Great Britain and Northern Ireland?

[Anthony Mangnall]

I am always delighted to take questions from the hon. Gentleman. I absolutely agree that if there is parity in all four corners of the United Kingdom, there is an opportunity to ensure that all citizens can get the organs they need; that they can get on to the register where possible; and that there is a developed and comprehensive transplantation strategy across the country. I understand that the hon. Gentleman went further than his party and was by far one of the earliest supporters of the opt-out initiative. I know to my heart that he was a pioneer in leading his party and getting them to where they needed to be to see the changes in Northern Ireland. I am grateful for his question.

As I was saying, the Government and the NHS should be proud of the campaign that they have run to date, and the undeniable progress that it has delivered. That brings me to my second point: the organ donor register. I am sure that all colleagues here today will agree that it is essential that we encourage as many people as possible to sign up to the organ donor register. As of 31 March 2021, 38% of the population had joined the register, while 3% had opted out. Initiatives are already in place to increase registration, with a number of routes available, whether through the Driver and Vehicle Licensing Agency, the NHS app, applying for a Boots advantage card, or even through the NHS Blood and Transplant organ donation website, which, just for clarity, is at www.organdonation.nhs.uk.

It is vital that we continue to keep as many avenues open as possible, and that the campaign continues to be fully supported and championed by the Government. With that in mind, I ask the Minister what plans are in place to continue to raise awareness of the organ donor register and to encourage continued conversation and education around organ donation. Secondly, would the Minister consider extending the scheme to include other official forms? That might include, but not be limited to, those signing up to the electoral roll or giving blood.

The organ donor register moves an individual’s organ donation from a passive decision to an active one. For every individual that decides to sign up to the organ donation website, they are providing a record of their consent to help save lives should the unimaginable happen to them. Importantly, by signing that register, individuals are providing an affirmation of their desire to be an organ donor, which I hope that their family members and loved ones will honour—I will touch on that again shortly.

As of 13 February 2022, there are 6,157 people waiting for an organ transplant in the UK. Even the large numbers that I have buried the House in thus far hide the fact that there is a shortage of donors in the UK. Between April 2020 and March 2021, in the UK, there were a total of 1,180 deceased donors and 444 living donors, which resulted in 3,391 lives being either saved or dramatically improved by an organ transplant. However, 474 people died while on the active waiting list and a further 693 were removed, primarily because of deteriorating health. Of course, I accept the varied reasons why people come off the list, but the numbers provide an indication that while the situation is improving, there is still work to be done.

The NHS Blood and Transplant strategy, “Organ Donation and Transplantation 2030: Meeting the Need”, published on 1 June, calls for a highly public campaign broadening the settings in which people might find information around organ donation. It also includes six key points: making living and deceased donation an expected part of care; developing and pioneering new technologies and techniques; ensuring recipient outcomes are the best in the world; ensuring that people of all backgrounds and circumstances have timely access to the organs they need; maintaining a sustainable service across the UK; and building a pioneering culture of research and innovation in donation and transplantation in the UK. I ask the Minister how those six action points are being monitored, and how often they will be reviewed. Furthermore, does she feel that anything should be added to those points since the introduction of the 2019 Act?

Although I promised to be positive and congratulatory about the Government’s action on this matter, I am aware of a few areas relating to organ donation that are causing some concern. As mentioned already, under the 2019 Act, and specifically the opt-out system, all over-18s—albeit with a few caveats—are considered to become organ donors when they die unless they opt out. An individual can also actively register, as I have mentioned already, through the organ donor register. However, a family member or loved one can—and often does—overrule the donation of an organ in both instances. As mentioned already, the consent rate for eligible donors was 68% between April 2020 and March 2021, meaning that loved ones, for various reasons, refused to support 32% of potential donations. That equates to 695 donors.

There are myriad reasons why consent for deceased donors might not be given: the patient expressing a desire not to donate, but not opting out; a lack of desire for further surgery on a body; a feeling that the patient had suffered enough; the fact that the process takes too long; or the fact that the donation was against religious beliefs. Of course we must respect the decisions and views of family members and loved ones; staggeringly, however, 10.2% of those 32% of organ donations were refused because family members were unsure about whether the patient would have wanted to donate. Surely that clearly shows the continuing need to have a conversation and actively encourage greater sign-up to the organ donation register. In actual numbers, that 10.2% equates to 71 individuals whose organs might have helped to save a great number of lives. Of course, I make no judgment about those families and the decisions that they take in incredibly difficult circumstances, but there is an opportunity for us to go that little bit further and help save those extra few lives.

With that in mind, what progress has been made with the Leave Them Certain campaign mentioned in the NHS Blood and Transplant strategic plan, which I referenced earlier? I understand that the Human Tissue Authority guidance specifically states that families will always be consulted and that scrutiny is needed in the process. However, where possible we should be trying to eliminate the second-guessing and possibility of going against the deceased’s final wishes.

I asked for this debate because among the regular correspondence that I have had with constituents on the matter of organ donation, I have had the incredible good fortune of having been introduced to Sarah Meredith and her family. Sarah is a 29-year-old constituent who lives with cystic fibrosis. Thanks to the approval of the drug Kaftrio, Sarah and thousands of others living with cystic fibrosis can look ahead with an improved degree of certainty and a greater quality of life. However, that wonder drug does not solve all the difficulties of living with that disease; Sarah needs a liver transplant.

Over the course of the last two years, I have met Sarah’s mother Cathy and sister Jessica to hear first hand about the ailments from which Sarah suffers and some of the problems that they have identified within our transplant system and the wider regional disparity when it comes to healthcare services. I have already highlighted some of the concerns around organ donation, but I would like to add a few words about healthcare infrastructure. The organ utilisation group, chaired by Professor Stephen Powis, was established by the then Health Secretary, my right hon. Friend the Member for West Suffolk (Matt Hancock), to provide recommendations that would deliver improvements in the number of organs accepted and successfully transplanted; to optimise the use of existing skilled workforce investment in infrastructure; to support innovation in the field of organ transplantation; to standardise practices across the country—a point made by the hon. Member for Strangford (Jim Shannon); and to provide equity of access and patient outcomes. I look forward to seeing the recommendations, the report when it is published—in March, I believe—and the Government’s response.

Will the Minister come before the House when the report is published to take questions from Members interested in this topic? Although the south-west can boast a high consent rate—it is only slightly off the Government’s 80% target—we are at something of a disadvantage when it comes to liver transplant units across the region. There are just eight such units in the UK, including one in a children’s hospital. The liver transplant centres nearest my constituency of Totnes in south Devon are in either London or Birmingham.

I have heard anecdotal and first-hand accounts about ill patients who have been asked to make the journey to London from south Devon for a transplant, only to arrive and discover that the organ they were expecting has deteriorated and is no longer suitable for transplantation. One can only imagine how awful that journey is in both directions in that situation. I understand that there is a new national programme to expand the number of living transplant centres across the UK and that the north-west and south-west are two priority areas due to a lack of existing transplant infrastructure. Will the Minister reassure me and all those across the south-west who are hoping for an improved service that this new programme will be rolled out at pace? It is clear that many cannot wait.

[Anthony Mangnall]

I thank the hon. and gallant—and mayoral—Member for his intervention. He has been an extraordinary champion on this matter; a significant amount of my research has been on the back of his words in this place to help to get that legislation to where it needs to be. On his point about education, I think he is absolutely correct. We need a combination of education and funding across all our hospitals, GP surgeries and other available forums to promote this issue so that we can bring down that five-year high and help to get as many people as possible off the transplant list, as quickly as possible.

[Jim Shannon]

I want to say for the record that my nephew—my brother’s son—had a kidney transplant; he was born as a wee child with a kidney the size of my thumbnail. He had to wait until he was almost 16 before he got a transplant, but he got it, and today that young man has a full life because of that. If anyone ever needs evidence—I know we all have some—of what a transplant can do, I can speak personally to that.

[Anthony Mangnall]

As ever, I thank the hon. Gentleman for his powerful intervention. He uses personal experience to lend great weight to a very serious topic, and that has certainly been registered by me and by the House. As we develop more and more strategies, as I hope we will, to encourage more and more to sign up on the organ donor register, people will hear his words, among those of others.

We are often quick to say that other countries have it better than us. While I am not suggesting that that is the case—especially thanks to the remarkable improvements that have been made over a short period of time—I will ask the Minister a final two questions. First, what engagement and consideration has the Department of Health and Social Care given to other countries’ organ donation and transplant strategies? Spain is often mentioned, and I would be interested to hear whether there is any consideration of that model and whether we can learn anything from it.

Secondly, the transplant benefit score also determines the position in which a patient might sit in relation to receiving an organ. How is that position altered when a new drug is used on a patient, presumably—one hopes—improving their situation? It would be interesting to understand whether the transplant benefit score is quick enough to determine where they are on that list.

The Meredith family are a fantastic group of campaigners for organ donation, and they are the reason why this debate is happening. I hope that their efforts in pushing me and others will result in renewed campaigns to make people aware of the organ donation register and to improve access to transplant facilities in the south-west. I very much look forward to hearing the Minister’s response.

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

It is a pleasure to serve under your chairmanship, Ms McVey. I thank my hon. Friend the Member for Totnes (Anthony Mangnall) for securing this debate and for being such a passionate champion for organ donation and transplantation. Having helped the hon. Member for Barnsley Central (Dan Jarvis) with the legislation, my hon. Friend is not just sitting on his laurels, but continuing with the campaign, because, as has been said, the legislation on its own is not enough to make a difference.

I also thank all those donors and their families who, at a very difficult time in their lives, have to make incredibly tough decisions. Even with the changes in legislation, it is an incredibly difficult time for them. Hon. Members will know that the 6,000 patients across the UK who are today waiting for lifesaving transplants are incredibly grateful for those who donate. The estimate is that every donor can save around nine lives, so it really does make a difference. More than one person a day sadly dies on the waiting list, so it is crucial that organ donation continues to be a high-profile issue.

It is nearly two years since the introduction of deemed consent for organ and tissue donation, known as Max and Keira’s law. All donors are now considered potential organ and tissue donors after death unless they make a decision that they do not want to donate. As my hon. Friend has said, among all the families approached since May 2020, the consent rate is about 66%. It could be higher. It is a good figure—much better than where we were—but there is still a lot of room for improvement. However, it has led to 296 organ donors and resulted in 714 organs being transplanted: we cannot overestimate the difference that has made to the individuals who received those organs and to their families.

If people wish to opt out, they can do so: currently, 27 million people have opted into the UK organ donor register and 2 million have opted out, so there is flexibility there. However, for many people, there is still a lack of awareness that a register exists, and very often they have not had those conversations with family members. Should the time come when, unfortunately, an incident happens and organ donation needs to be considered, families play a crucial role throughout the donation process, both helping NHS staff understand the wishes of the deceased and ensuring their organs are suitable for transplantation. As my hon. Friend the Member for Totnes has pointed out, it is really important that we continue to have national conversations about organ donation, so that if the time comes, the family of the deceased person are aware of what the issues are. Even with an opt-in and opt-out system, that conversation should take place well in advance.

At difficult moments, both families and NHS staff who may be working in A&E or in different clinical units may not feel comfortable having that conversation. When the family are struggling to come to terms with the fact that their loved one is on the register, but they are not happy about that, those are very delicate conversations to have, and it is important that staff are supported as well. The views of the family will always be taken into account: even though they cannot revoke legally valid consent, they will have an influence; as we heard from my hon. Friend, that is having an impact and meaning that some donations are not happening.

The role of the specialist nurse in discussing the matter sensitively and helping to understand some of the family’s concerns is important and that role needs to be facilitated wherever possible, because that can make the crucial difference between the family accepting the decision of their loved one and not coming to terms with it. We need to make that conversation routine and build awareness, because a 32% impact on the loss of organs into the system for donation is a very high figure.

NHS Blood and Transplant, which is responsible for organ and tissue donation across the UK, has launched the new UK-wide organ donation strategy, the main aim of which is simply to increase organ donation and transplantation. My hon. Friend the Member for Totnes asked what work is being done to raise awareness: we have organ donation week in September, and last September that led to the Leave Them Certain campaign. That campaign aimed to reinforce the role of the family and normalise people sharing their organ donation decision with family members so that, if that discussion needs to happen, it does not come as a shock. We are also introducing organ donation and transplantation into the school curriculum, because it is important to start that conversation early on, and aiming to promote awareness in young people about not just their own decision, but that of their other family members.

There was a multimedia campaign on Valentine’s day this year—my hon. Friend might have been busy on Valentine’s day; I do not know—to encourage families to have a heart-to-heart discussion about organ donation. There were 300 people waiting for a heart transplant on Valentine’s day, including more than 40 children, so it was thought crucial to raise awareness on that day, but we can all do our bit when it comes to promoting the need for organ donation. World Kidney Day is 11 March, which will provide us with another opportunity, but I am very happy if my hon. Friend wants to apply for another debate this coming September to hold our feet to the fire in making sure that we are driving up organ donation numbers.

I want to touch on health disparities, because some communities are struggling more than most when it comes to organ donation. Black and Asian communities face significant shortages and significantly longer waits—around 10 months longer than the general population—and much of that disparity is due to the lack of donation in those communities. There is a whole host of reasons why that is and, as my hon. Friend the Member for Totnes has said, this is not about judging those who do not donate: it is about increasing awareness of the difference that organ donation can make to people’s lives. Alongside other stakeholders, such as the National Black, Asian and Minority Ethnic Transplant Alliance and all the main faith organisations in England, we are actively trying to tackle some of the concerns of particular groups and communities around organ donation. We are raising awareness and promoting the work that can be done.

I am particularly concerned about the point that my hon. Friend mentioned about provision for living donations in the south-west, and the logistics that sometimes lead to donations and transplantations failing. If someone is willing to donate an organ, we should make every effort to ensure that it becomes a successful transplant. I will take away his point and look at some of the factors that might be influencing that situation.

Covid has had an impact on the service. As we heard from the hon. Member for Barnsley Central, the waiting list is higher than it has been in past, but I am pleased to say that organ donation and transplantation has now mostly returned to pre-pandemic levels, although there is a backlog of people to get through.

[Jim Shannon]

In my intervention, I referred to the need for co-ordination between the four regions, so that no organ could or would be lost. There was some discussion in the newspapers, although I am not sure of the evidential basis for it, that said that some organs had been lost during the covid pandemic. Let us make sure that does not happen.

[Maria Caulfield]

The hon. Gentleman is absolutely right. We need to ensure that we tackle any practical or logistical issues; I am happy to look at that. If there are particular regions where the centres are difficult to access because of the distances involved, then we absolutely need to consider that.

I take on board the points made by my hon. Friend the Member for Totnes about improving the ability of people to sign up for the register, whether through the electoral roll or through other mechanisms; we want to make that as easy as possible. I am convinced that there are groups of people who would be very happy to donate, but we need to make it as easy as possible for them to do so.

I will look at international comparisons. If there are lessons to be learned from other countries, let us not reinvent the wheel but gain some knowledge from them.

I thank all hon. Members for taking part today, particularly my hon. Friend the Member for Totnes, and I thank the Meredith family, who are driving this campaign forward and are the reason for the debate today. We are making huge progress. The legislation has made a big difference, but there is lots more we can do to ensure that people are not waiting on the transplant list any longer than they need to.

Question put and agreed to.

Dementia Research in the UK

Jim Shannon Excerpts

Thursday 10th February 2022 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in any debate secured by the hon. Member for Oldham East and Saddleworth (Debbie Abrahams). Indeed, I do not think she has secured any debate on dementia in either the Chamber or in Westminster Hall that I have not been at. That is first because I want to support her, but secondly because the subject matter is something that is real to me as a constituency MP, and to others who have told their stories in the Chamber. I find those stories incredibly moving because they illustrate, as personal stories always do, how complex this issue is. It is a pleasure to support the hon. Lady in this issue, which affects every corner of this great United Kingdom of Great Britain and Northern Ireland.

Strangford is a very beautiful location with wonderful facilities and lovely people. Given that, we have a high number of older retirees, who moved there to enjoy the safety of our constituency. The natural follow-on from that is that we have a large number of people who are susceptible to dementia. Over the years, when one is probably at around my age, one notices people who one remembers from childhood but who are now getting older and have developed dementia. I have quite a few friends in that position—I am not better than anybody else, but I can fairly quickly see where the issues are and one notices the slip away.

For instance, my mother had a lady living next door. One day she came in to see her and afterwards I said, “Mum, I think that lady is just starting to have a wee bit of dementia or Alzheimer’s.” She said, “Are you sure?” and I said, “I’m not smarter than anybody else, but I think there’s the start of something there”, and unfortunately there was. We know that drugs and medication can delay the process by five or six years, stopping the slide. As a busy constituency MP, I deliver on these issues all the time, whether it be attendance allowance forms, benefits issues or just helping people, as I do by the day, by the hour and by the minute. Recent figures and statistics show, and this is scary, that just under a fifth of all dementia diagnoses in Northern Ireland are of residents in the local trust in my Strangford constituency. As a busy MP with very busy staff who deal with these issues every day, every week and every month, I see these things.

Of course, we understand that dementia is not limited to individuals. We must remember that dementia affects entire families. The right hon. and gallant Member for Beckenham (Bob Stewart) mentioned his mum, and the hon. Member for Ochil and South Perthshire (John Nicolson) told a very personal story about his mum, too. We can all relate, as it affects entire families—children, grandchildren, sisters and brothers.

Dementia takes people away from us while they are still alive. Those words sum up the debate very well, as that is the impact of dementia and Alzheimer’s. People see the shell of their precious sister, who has forgotten her husband and who screams when he comes into the room, “Who is this man?” She does not recognise him, but they have been married for 35 or 40 years. She cannot express her toileting needs or say that she is simply lost, which is what these people are. That is the reality.

This is replicated widely throughout the UK. Life is simply harder, as taking the standard medication is a trial. It is little wonder that, currently, one in four NHS hospital beds is occupied by someone living with dementia.

[Bob Stewart]

It is nice to see you in the Chair, Mr Deputy Speaker.

A friend of mine tells me that his wife suffers from dementia. She sometimes turns round to him and says, “Why are you sitting in my husband’s chair? Get out.” Isn’t that tragic?

[Jim Shannon]

That is exactly the kind of story we are all trying to illustrate with our words, or broken words, this afternoon. It is exactly what my constituents say to me.

The economic cost to the UK of caring for people with dementia is estimated to grow from £24 billion in 2014 to £47 billion by 2050. If that is the case, we really need research and development. Everyone who has spoken in this debate has said that we need it now.

I do not want to catch the Minister out, as that is not my nature, but the commitment in the 2019 Conservative manifesto has not yet been delivered. I am not getting at him, as he knows, but we need to have that commitment delivered. Dementia is increasing, and so must our response. We need funding for cures and coping mechanisms, which goes back to the commitment on research and development.

Asking people to play a game of sudoku on their phone each day is not a preventive strategy. We must put our money where our mouth is and find a way to answer the question of dementia. Way before covid arrived, I was invited to attend a dementia and Alzheimer’s help group at the Church of Ireland church in Newtownards. I learned a lot that day from speaking to family members, who told me that playing music sometimes seems to bring those with dementia or Alzheimer’s back to where they were. The hon. Member for Ochil and South Perthshire spoke about dancing, and I saw a lady dance—that is what she remembered. Music seems to bring people back, so it can be therapeutic.



There is one event I attended that I do not think I will ever forget. I know the people who run an Alzheimer’s and dementia home. They are very good to all their residents, who have different levels of dementia and Alzheimer’s and are at different stages. The trust were doing an event and they invited me as the MP and some of the local councillors down. They said, “We are going to try to illustrate to you what it’s like to have dementia or Alzheimer’s.”

Here is what they did: first, we put earphones on, which kept the noise around us but made a constant noise in our ears that was quite deafening and scary. They locked us in a room, in darkness, and they put a mask over our eyes so we could see nothing but darkness, which the right hon. Member for Beckenham (Bob Stewart) referred to. They put a sole in our shoe that had points in, so that every time we took a step it was like stepping on stones. We did that for 10 minutes, and it was probably the closest I ever came to being mad. That is how horrendously scary that experience was, and it left a lasting mark on me. That illustrates, from a personal point of view, what it means to have dementia or Alzheimer’s.

In the 2019 Conservative manifesto, the Government committed to addressing dementia, pledging to double funding for dementia research to £160 million a year. However, I say gently to the Minister that two years in we have seen no plan to deliver that funding increase. I understand that there are reasons because of covid-19, but there are also reasons to deliver what was committed, which we all support, and we would all support the Government to make that happen.

The latest figures show a decrease in Government spending on dementia research. For the year 2020, funding for dementia research was £75.7 million, down £7 million from £82.5 in 2019 and £22.4 million down from its peak of £98.1 million in 2016. That tells me that we really need to do something. I know this Minister is a Minister of action, and I know that, when it comes to telling us what will happen, he will be able to tell us that that funding commitment will be addressed, so I look forward to his response.

I support the calls of Alzheimer’s Research UK. The rapid development of the covid-19 vaccines, a success story that we all welcome, tells us that, if we focus on something, we can do it. If we can do it, let us do it—and if we need the money that was committed to make that happen, let us do that as well. That is what we want to make happen. Alzheimer’s Research UK says:

“The rapid development of COVID-19 vaccines has demonstrated the role the UK Government can play in bringing together different stakeholders to focus on a common challenge, and the impact this collective energy, funding and determination can have. In parallel to increased research funding, we need the approach taken to COVID vaccines to be applied to dementia—coordinated, ambitious action from government to bring together industry, health services and researchers”—

all those who want to help, including our Minister and the Government. It continues:

“This bold approach must be reflected in the forthcoming Department of Health and Social Care’s Dementia Strategy and will ultimately ensure UK patients have priority access to innovative new dementia treatments.”

Dementia is unfortunately a growing problem, and we must focus on it, not simply because it will be beneficial to our financials in the long term—it will—but because families are being torn apart by the pain of losing loved ones while they care for their shell. That is what is happening. It is like losing a piece of them week by week, and it hurts. It hurts all those families. It hurt the right hon. Member for Beckenham, it hurt the hon. Member for Ochil and South Perthshire and it hurt the hon. Member for Oldham East and Saddleworth, who lost her mum.

When I think of all those things, I believe we can do more to stop dementia, and funding for research is the way we must go. Again, I look to the Minister—to my Minister and to my Government—to make that manifesto commitment a reality, and sooner rather than later.

Special Educational Needs and Children’s Mental Health Services

Jim Shannon Excerpts

Wednesday 9th February 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you, Ms Fovargue. I apologise to the hon. Member for Newbury (Laura Farris) for not being here earlier—I was at the launch of an inquiry that I chair. I spoke to you, Ms Fovargue, to ask for permission and I thank all hon. Members for the opportunity to make a contribution.

Special needs education is a key issue. When the news of lockdown for schools came, my initial concern was for those going through exams. My next train of thought was for those special needs children whose parents simply could not take them on. They were difficult times, as everyone present knows, and the hon. Member for Newbury knows that better than most.

We had parents ringing our diverted phones crying because they literally could not settle their special needs child who was waiting on their school bus and could not understand the concept of lockdown and what it meant. For special needs children, it is important to have a routine and a simplified version of life, so that they can try to cope with it. It is not an exaggeration to say that children with special needs were distraught, and it quickly became clear that the impact on them was large. I was thankful for the Tor Bank School, the special needs school in my area, which kept its doors open for its own pupils and took a small number of students from other schools that were unable to open. Our office referred one pupil whose mother was distraught, and they took the child in until their own school reopened. These schools took special steps to enable things to happen, and we are in debt to them for that.

My thanks go to Peter Weir MLA, the former Education Minister, for allocating specific funding to special needs schools for tailored catch-up programmes and mental health support, as well as to mainstream schools for the wellbeing of pupils. Recognising the impact of isolation on individual children, and on children as class groups, is an essential part of helping them process and deal appropriately with the remnants of isolation. I am thankful that Ministers have rightly acknowledged the difficulty of lockdown for our children and that it is our duty to do our utmost to repair it.

The briefing that I received from Parentkind merely underscored my opinion of the damage done to all schoolchildren, but particularly children with special educational needs. I want to quote from it because it illustrates the problem. I know people say there are lies, damned lies and statistics, but I tell you what: these statistics tell a story. I hope nobody else has stated them already.

Some 55% of children with special educational needs experience homework-related stress, as opposed to 37% of children without SEN. Anxiety affects 55% of children with SEN, as opposed to 34% of ordinary children. Other figures include 46% versus 32% for exam stress; 45% versus 27% for bullying; 34% versus 16% for pressure to constantly engage with social media; 38% versus 11% for depression; 35% versus 11% for cyber-bullying and online abuse; 30% versus 6% for self-harm; 28% versus 5% for eating disorders; 25% versus 4% for sexual harassment; and 23% versus 3% for substance misuse.

Those statistics clearly illustrate the impact on those with special needs. These figures underscore the greater vulnerability and the higher risk facing children from less advantaged backgrounds or with additional needs or disabilities. The data shows that they were more susceptible to mental health impacts and social challenges in their peer group. It is clear, as this debate shows, that there is a problem, and we in this House need to ensure that the solution is available and is long term.

It is good to see the Minister in her place. We have a special friendship, and she does extremely well when it comes to answering these issues. We look to her to address the impact on England. This issue is not her responsibility when it comes to Northern Ireland, but it is always good to bring a Northern Ireland perspective to these debates, as well as to illustrate to the hon. Member for Newbury that we in Northern Ireland have similar pressures.

[James Daly (Bury North) (Con)]

It is a pleasure to speak in this debate. I thank my hon. Friend the Member for Newbury (Laura Farris) for bringing this important issue forward. I hope that Members will forgive me because, based on the contributions that have already been made, I am going to give a completely different speech from the one I had intended to make.

I certainly do not like doing this, but I feel that I have to bring my personal experiences to the debate. My son is on the autistic spectrum.

[Jim Shannon]

Will the hon. Gentleman give way?

Covid-19: Military aid to Civil Authorities

Jim Shannon Excerpts

Tuesday 8th February 2022 Westminster Hall

[Chris Loder (West Dorset) (Con)]

I beg to move,

That this House has considered requests for military aid to civil authorities during the covid-19 outbreak.

It is a pleasure to serve under your chairmanship today, Mr Hollobone. I am grateful to the House for allowing time for this important debate.

Coronavirus has created pressures on all public services the likes of which we have never seen before. When those services are critical for preserving life, the pressures—increased absenteeism and greater demand—are significantly more noticeable. Many constituents have had awful experiences of waiting four, eight or even 10 hours for an ambulance for either themselves or a relative. I applied for this debate because constituents—many of whom are relatives of vulnerable people—have recently been in touch to share their despair over having to wait many hours for an ambulance, even in urgent circumstances.

One constituent had to stay by the side of his late father’s body for nine hours before an ambulance was able to attend to his father and take him away. The shock of finding his father unexpectedly dead at home would have been enough—I cannot imagine having to sit beside a deceased loved one for many hours, waiting for help that just does not turn up. Another constituent in her 80s waited for an ambulance for 10 hours after she broke her hip at home. Another was identified as having a stroke by a doctor who lived nearby; because they could not wait for an ambulance, the doctor kindly drove her directly to the hospital.

There are many such stories. I am sure West Dorset is not the only area in the United Kingdom experiencing such difficulty, and I am sure I am not the only MP hearing such stories. In this debate, my intention is not to pile criticism on the South Western Ambulance Service. In West Dorset and across the wider south-west, our ambulance service has been working to absolute capacity until it simply cannot do any more. Diligent MPs cannot stand by and allow this situation to go on without proper scrutiny. It is clear that something needs to change.

These failures are caused not by incompetence or inefficiency, but by a greater demand upon our health systems than they are capable of handling without further back-up. A lack of social care options for people fit for discharge has caused a backing up throughout the hospital system that has ultimately compounded this situation. Ambulances often need to queue outside A&E for hours, with patients having to wait so long that they are triaged in the ambulance.

Ambulance drivers are in frequent close contact with vulnerable people. They have needed to be even more vigilant than the rest of us about self-testing and isolating when required so that they do not infect their patients. While that sense of care and responsibility is their duty, it has resulted in higher levels of absenteeism than the ambulance workforce has been able to manage.

The compounding of those issues—with absenteeism and capacity pressures in hospitals resulting in ambulances queuing at A&E, unable to leave until they have safely transferred their patients into the care of hospital staff—has meant the ambulance service is unable to respond to the next call. The result at home in West Dorset is a lack of ambulances available and people waiting for hours, sometimes in great pain and distress.

When our civilian services are in this situation, during a national crisis or not, the last step of escalation is to the Government, for assistance from the Ministry of Defence.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on an absolutely superb debate, as I was saying to him beforehand. It will probably encapsulate all our thoughts, and I know the Minister will wish to respond to him. We have been grateful recipients of Army medics in our hospitals during covid-19; indeed, even this week, help is being given by 50 to 60 medics in the Ulster Hospital, just on the edge of my constituency. Does the hon. Member not agree that there is a very clear role for the Army to play, and that that role has not yet ended? Further, we owe a debt of gratitude to those who serve us in times of war and peace—our wonderful armed forces.

[Chris Loder]

I cannot agree enough with the hon. Gentleman. I am delighted to be part of the armed forces parliamentary scheme and spending time with the Royal Navy at the moment. Those in the armed forces not only dedicate their lives to service of this country, but go so far in supporting and helping those in need in the most difficult situations. They are to be commended far more than I can do in this debate this afternoon.

Although we understand that the armed forces capacity is not limitless, we unconsciously rely, safe in the knowledge, that in the direst circumstances our service personnel will step in and avert a crisis. When that does not or cannot happen, the resilience of our emergency services comes into question.

My local South Western Ambulance Service first scoped its request for military support in July last year. There were six operational and clinical areas where it sought additional support, because of increased activity and absenteeism due to coronavirus. Of those six areas, only one was fulfilled. After many weeks of negotiation, the South Western Ambulance Service received very limited military personnel on 11 August last year: 18 soldiers to fill logistics roles, who also replenished equipment on ambulances until the end of August. Those 18 soldiers were much appreciated, but that was only 18 for 5 million people in the south-west.

The South Western Ambulance Service had also asked for clinicians, blue-light drivers and mechanics, among other roles, but those requests were not granted. I know that it is not the role of Her Majesty’s armed forces indiscriminately to provide any and all support to civilian services that is requested. However, in March 2020, the Secretary of State for Defence announced:

“From me downwards the entirely of the Ministry of Defence and the armed forces are dedicated to getting the nation through this global pandemic.”

At that time 10,000 personnel were put at higher readiness, thus making 20,000 personnel available, if needed. Therefore, we might be forgiven for believing that assistance from the Government would be more forthcoming in this case.

The period of the coronavirus pandemic has been one where our armed forces were at their most ready to assist civilian services, and should be commended for it. Of course, more services required help and so military assistance had to be spread more thinly, but it was surprising to discover that the MACA request from the South Western Ambulance Service was fulfilled only to an extremely small extent. That gives me and my constituents great cause for concern. That was mainly as a result of the original request being filtered down and weakened by some civil servants before evaluation. That is a great concern to me as a south-west MP.

I have no doubt that difficult decisions had to be taken. The armed forces are needed operationally for so many things. To ask them to support civil services is no small request in terms of resources and, of course, the military cannot simply be diverted from its primary role. However, given the extent to which we have experienced ambulance waiting times, citizens waiting in pain for so long, and the watering down of the needs of ambulance services before evaluations took place, I question whether there are things that can be learned to improve the process of MACA requests in future, by looking at examples such as those I have outlined.

Ambulance services exist to respond to acute and critical events. Those are situations that cannot, by definition, wait without potentially endangering life. Compared with another operational deployment of the armed forces in the pandemic, testing, one has to note that, although testing was vital for oversight of the overall size of the pandemic in the UK, a timely covid test does not compare, in terms of urgency, with a person waiting for hours in acute pain—a person in their 80s having broken their hip or a person with a suspected heart attack or stroke.

Perhaps in the future we ought to have a better publicised hierarchy of need when we face a crisis that requires military support to the civilian authorities. I cannot pretend to know the intimate details of every MACA request submitted to the Government, but I can think of few acute and urgent services that might need prioritised support—and none other than our ambulance service.

One of the criteria for MACA provision is that military aid should always be the last resort, and that the use of mutual aid, other agencies and the private sector must be otherwise considered as insufficient or unsuitable. I pay tribute to St John Ambulance, which has provided much support and continues to do so. It is a volunteer army in itself, with a deeply held mission to help those in need. I wonder whether there needs to be a more established role for St John Ambulance in this area, so that it is able to more readily and structurally respond to some of these needs and to have a more substantial role in our nation’s resilience arrangements to support the emergency services. That would enable ambulance services to receive support more readily than in the cases I have outlined.

The South Western ambulance service did not and does not ask for help lightly. Only when the situation for its patients was becoming very difficult indeed did it contact the Government for help. I should say that it is only following my own intervention and inquiry that the ambulance service kindly shared some of its insights with me. Even I was surprised, though, to hear that only one out of six of its specific requests was partly fulfilled.

I hope this debate will offer an opportunity for the Government to review and improve the systems surrounding MACA requests. Greater clarity and transparency for those services making requests is needed so that they know what levels of support they can expect, especially when there is no alternative. Then my colleagues and I —MPs of Dorset and the wider south-west—will be able to further support the ambulance service in making sure we never experience some of these difficulties again.

--- Later in debate ---

[Edward Argar]

I will address that point and then return to the military point. I had a very productive meeting with St John Ambulance in the past couple of weeks to discuss exactly that. We should not underestimate the huge role it has already played throughout the pandemic in supporting our ambulance and other emergency services.

[Jim Shannon]

This does not cover the constituency of the hon. Member for West Dorset (Chris Loder), but Northern Ireland has a Territorial Army medical regiment based in Belfast. The majority of people in it are probably NHS staff—they are doctors, nurses or whatever —and that is where their interest in being in the TA comes from. Will there be circumstances on the mainland in which the TA medical corps could be used to our advantage and to address staffing shortcomings?

[Edward Argar]

It is important that we take advantage of all opportunities in terms of those qualified professionals and their ability to support our more regular frontline services.

To pick up on the point raised by my hon. Friend the Member for West Dorset about MACAs and military capacity, a large number of those 20,000 were used for testing and helping to build Nightingale hospitals, and they have recently been helping in vaccine testing centres. However, capacity in terms of, for example, clinically qualified Army medics is limited, and they often already serve in the NHS and in hospitals, so there is not a huge pool to draw on. It is important that we are clear about that. Secondly, I mentioned to my hon. Friend the point about those qualified as blue-light drivers. Again, that is not all the 20,000 or anywhere near. We have to be—realistic is the wrong word—careful in our expectations of the capacity to support specific requests, such as the specific types of support that his ambulance service put in for.

More broadly, considerable support has been offered by the military for tasks such as logistics, which my hon. Friend highlighted—for example, in supporting the ambulance service in a range of roles. Currently, the Ministry of Defence provides support to ambulance services in the following ways: 366 personnel in a range of roles, including non-driving roles; 96 personnel continuing non-blue-light ambulance driving support for the Scottish Ambulance Service; and 313 personnel in driver support to the Welsh ambulance service.

My understanding of the specific matter to which my hon. Friend referred is that it was incorporated into the broader request for ambulance drivers between 10 and 31 August last year. The element of that request to be granted was the 28 category C drivers who were provided by the Ministry of Defence. However, I come back to the point that, while he is right that the military are always there to assist us in times of need, we equally need to be realistic about their capacity in specific places.

Elective Treatment

Jim Shannon Excerpts

Tuesday 8th February 2022 Commons Chamber

[Sajid Javid]

I agree with my hon. Friend about the importance of the workforce. She is right to raise the importance of cancer care and to note that it has remained a huge priority for the NHS despite all the pressures of the pandemic. In the plan that we are publishing today, we have set out a number of cancer targets. They are all very ambitious with record amounts of investment. Once my hon. Friend has looked at the plan, I would be happy to discuss it further with her, either the cancer aspects or anything else.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for a progressive and positive statement on the way forward. With statistics showing that there were some 10 times more patients waiting six weeks or more for cancer diagnostic tests at the end of November 2021 than in November 2019 in England, and with similar UK-wide statistics, what specifically is the Secretary of State doing to address the massive backlog in those life-saving tests?

[Sajid Javid]

I welcome the hon. Gentleman’s comments. With respect to life-saving tests and scans, including for cancer, the plan sets out a huge amount of new investment in diagnostic capacity. One area of investment is the new community diagnostic centres, some 69 of which have already opened across England in convenient places such as shopping malls and car parks, which people can access much more easily and get their results from much more quickly.

Elective Care Recovery in England

Jim Shannon Excerpts

Monday 7th February 2022 Commons Chamber

[Edward Argar]

My hon. Friend is right to draw attention to the huge financial challenges that trusts were saddled with following Labour’s PFI deals and I am of course delighted to agree to meet him to see what we can do to try to untangle the worst of them.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his answers, which reflect the fact that he understands the need to do better and wants to improve. Will he outline what discussions have taken place among the devolved Assemblies and the Government here to prevent healthcare from becoming a postcode lottery in the UK? Does he acknowledge the fact that, although waiting lists for appointments were worsened by the covid crisis, they were poor beforehand, so all regions need to work together to address the issue of recovery?

Dentist Industry and NHS Backlogs

Jim Shannon Excerpts

Monday 7th February 2022 Commons Chamber

[Andy Carter]

I thank the Father of the House for his intervention, and I agree with him—the needle in a haystack analogy is absolutely right. In my role as a local MP, I am representing both providers of dental treatment and patients who want to access that treatment. So I have tried to take time in the past couple of weeks to speak to dentists in my constituency about their experiences and how the system is operating today. Many of them have been providing NHS services for many decades.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this debate to the Chamber, because this is an important subject, not only for him, but for all of us. Does he agree that unless we have more support for the dental industry and for affordable dental care, this will not be possible for those who are working and not entitled to help yet who are struggling with the increased cost of living? Does he further agree that there is a dental catastrophe waiting to happen in the near future if we do not do something right now?

[Andy Carter]

I absolutely agree with the hon. Gentleman. That is the purpose of this debate: to highlight to the Minister the concern that I and other Members around the country have that NHS dentistry is on the brink and that there has to be radical change.

As well as talking to dentists, I have spoken to constituents who have written to me, completed an online survey that I placed on my website or messaged me directly following publicity in local newspapers about this debate. This topic matters not only so that people can access urgent treatment for toothache. More and more studies are confirming what dentists have always argued: that tooth decay and gum disease are increasingly linked to a heightened risk of serious health problems such as stroke, heart disease and diabetes. A healthy mouth is the gateway to a healthy body. Neglecting oral health can sabotage our long-term overall health. As the hon. Gentleman indicated, this topic really does matter to many, many people.

One of the first issues I want to highlight is the challenge people face when they move house. Finding NHS treatment can be almost impossible as a new resident in a location. I wanted to say, “getting on to a surgery’s list,” but it is clear from speaking to dentists that the notion of getting on to a list does not exist anymore; there are no such things as dentists’ lists today.

In my quest to help residents, I have spoken to NHS England, Warrington clinical commissioning group and the regional dentists’ team. They have all pointed me to an NHS website that lists details of dentists who are accepting patients in my local area. The reality is that the website is massively out of date. In most cases, surgery information has not been updated for about two years. Despite being assured that there are dentists accepting new patients in Warrington, it is simply impossible to find them. As my hon. Friend the Member for Worthing West (Sir Peter Bottomley) indicated, it is like looking for a needle in a haystack.

On Friday, I had it confirmed by constituents I spoke to that NHS England could not provide them with the details of any dentist in Warrington, Cheshire or Merseyside who was accepting new NHS patients. They could provide details of emergency dental treatment services available in Manchester or Liverpool, but NHS England confirmed that no dentists are currently taking on new NHS patients across an area with a population of about 1.8 million people. I am afraid, Minister, that the signposting we are offering online is woeful and urgently needs to be updated.

In early January, I heard from many people living in Appleton, who had received notice from their local practice that after many years of providing NHS treatment, it would no longer be offering services through the NHS. On Friday last week, I met Paul and Paula Green, who have been patients at Appleton Park dentist surgery for many years. They are two of about 8,000 local people who received the notification that their provider was changing the way it offers services, and that the only way they could continue to get treatment at the local practice was to become part of a dental plan or to pay for their treatment. Mrs Green has been at the same surgery for about 50 years. In fact, the whole family are patients. They were suddenly informed that treatment provided by the NHS would no longer be available from the end of March. They will have to look further afield for a practice—there are no other practices in the village—and there is no guarantee that they will be taken on by any practice in Warrington, Cheshire or Merseyside.

Many of those 8,000 people will be left without an NHS dentist. Some could even be mid-treatment. They have paid their national insurance and their taxes, in many cases over many years, but now they cannot get NHS treatment. Understandably, they are pretty cross. They are cross with the dentist for making this change. They are cross with the regional NHS team. They are cross with me as their Member of Parliament. They are cross with the Government. They want to know what the Minister is going to do to help them find an NHS dentist who can look after their family’s oral health.

Myriad factors are driving practices across the country to make such moves, and I will cover a couple of the main issues that I hear when I talk to owners and senior dentists across my constituency. One of the first issues I want to discuss is the need—much like in many other sectors—to bolster and boost skills. Dental practices stand or fall based on the quality of their people, and if a dental practice cannot recruit enough good staff with the right level of training, that practice obviously has a serious problem. However, unfortunately, research suggests that this is a common problem for small and medium-sized dental practices right across the UK. Most dentists are SMEs: they are run by a senior dentist, receiving payment from the NHS to provide services through an annual contract, which I will discuss in more detail shortly.

The problem is that the UK does not seem to be producing sufficient numbers of dentists with the skills that those SMEs need. On top of that, the difficulty with dentistry is that when people graduate, they tend to work where they qualify or where they live, and they are not necessarily going to dental schools in the north of England—in fact, most of the dental schools in this country are in the south or the midlands. We are simply not training enough people in the regions who want to become dentists, who want to take on those NHS contracts, and it is not sufficient to say that we pay trained professionals well. We seem to have a lack of supply and over-demand.

What is the sector looking for? By widening access and participation in training, the Government need to create more flexible entry routes, including for overseas dentists, as well as develop training places for dental professionals right across the UK. This is not just about dentists: it is about upskilling dental technicians and dental associates by providing them with more training, so that they can provide a greater range of services. There are many vacancies for salaried dentists available in the UK—anyone who searches online can find details in pretty much every town around the country—but the problem is particularly bad in small towns and villages across the north of England, and the ability to track new entrants into NHS roles is limited, particularly when dentists working in the private sector can earn much more than they do in the NHS.

There is also an immediate need for dentists from outside the European economic area, and we should be making much more of our fantastic links to the Commonwealth countries, where there is often a surplus of trained dentists. Will the Minister look to extend the General Dental Council’s recognition of dental qualifications to schools outside the EEA? When needed, candidates could work in a provisional registration period with close supervision and training for a year before registration with the GDC is granted, a measure already used for overseas doctors by the General Medial Council, but not currently employed by dentists. I ask the Minister to look at recruitment, with a target to increase the number of UK dentist training places and incentives for NHS dentists to move to areas where there is less access to NHS provision.

I mentioned the NHS contract earlier, and I want to move on to that topic now. One of the main points that I have heard from dentists is that urgent attention needs to be paid to the 2006 NHS dental contract. Without fail, every dentist I have spoken to has said that the current system of renumerating dentists purely on activity is simply not fit for purpose. It has received criticism from dentists; from Governments of both political persuasions; from the Health and Social Care Committee; from the chief dental officer for England and Wales; from the British Dental Association; from patient groups; from all the major providers of dentistry in the UK; and, I think, from numerous Health Ministers who want to see changes. I suspect that my hon. Friend the Minister also wants changes to be made to the dental contract.

Covid-19: Purchasing Effort

Jim Shannon Excerpts

Thursday 3rd February 2022 Commons Chamber

[Madam Deputy Speaker (Dame Eleanor Laing)]

And finally, I call Jim Shannon.

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to ask a question in this House, at whatever time, Madam Deputy Speaker. May I thank the Minister and the Government for their endeavours during the pandemic? I do not think that anybody in this House does not recognise that, without the Government’s initiatives, these things would not have happened.

I understand the pressure that the Department of Health and Social Care was under at the outset of the pandemic to ensure that staff were not taking their lives in their own hands when they entered hospital. But Minister, reports of £8.7 billion losses are astounding. Will there be a full investigation into the scale of loss and the reasons for the loss? I understand the problems at that time—I really do—but think of the good that that money could have done to address waiting lists and new cancer drugs. Minister, what has happened grieves me in my heart, and I suspect it grieves you in your heart—

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. Please will the hon. Gentleman not call the Minister “you”? It is my ambition that he will one day get this right—please, please.

[Jim Shannon]

It grieves me in my heart, and I suspect that it grieves the Minister in his heart as well.

[Edward Argar]

I am grateful to the hon. Gentleman for his question. I have made it clear throughout that our priority was getting the PPE that we needed to give that protection and to save lives but, equally, every pound of taxpayers’ money is valuable. Where fraud or failure to deliver contracts is evidenced, we will go after that money, quite rightly, and seek to recoup it for the taxpayer.

On the amount that is, for want of a better way of putting it, lost through goods not being fit for use, that is £673 million, but that is what we are investigating through those contract dispute resolution mechanisms and through anti-fraud work. The other amounts of money in here did purchase PPE, which was delivered and which we have. Different settings require different standards of PPE, so some that was purchased may not be of the standard for the NHS but can be used elsewhere. We are exploring all options to make sure that the PPE we have, where it can be, is used.

Cystic Fibrosis: Prescription Charge Exemption

Jim Shannon Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak on this issue. I thank the hon. Member for Blackpool North and Cleveleys (Paul Maynard) for leading the debate, as he often does, on an issue that is of particular interest to him. Again, he has shown his expertise and knowledge on the subject matter.

I also thank the hon. Member for Ashfield (Lee Anderson) for his personal contribution. There is no better way to tell a story than by recounting personal experience, which he has, and we thank him for disclosing it and making it public. He is right about the ESA and PIP—they are there to help—but those people are not working. Therefore, the money that they have coming in is also to try to keep their household surviving. It is not as though they have a whole lot of extra money to put into things, because they do not. That is a fact of life.

I am the Democratic Unionist party’s health spokesperson, and I am very pleased to participate in this important debate. I think the hon. Member for Bristol East (Kerry McCarthy) and I have been in nearly every debate on this issue in Westminster Hall, for whatever number of years that may be. I cannot remember ever not following her—I am always following in her footsteps. I thank her for her knowledge and for telling her story. We may have heard it before, but it does not lessen the impact on the family.

The issue is quite simple. A list of exempt medical conditions was written by the Government over 50 years ago in 1968, and although in the UK there are now more adults than children living with cystic fibrosis, the Government have never updated the list. I am very clear, as was the hon. Member for Ashfield, that they should change the list of exempt conditions. The Minister is a good man—I am not saying that to pacify him in any way or to be smart: he is a good man. The relationship that he has with every MP, including myself, has always been very amenable, and he tries to solve problems. Not to put the Minister under any pressure, but we look to his good nature to give us some hope on where we are with this issue. It is simple: it is time to get CF on the exemption list.

The Cystic Fibrosis Trust can offer a one-off grant for the first 12 months of prescription prepayment charge, which gives individuals free prescriptions for a year. That does not help with the payments that are due after. As the hon. Member for Ashfield and others have referred to, it is about the ongoing costs. The Government stated in 2021 that they had no plans to review or extend the prescription charge medical exemptions list. That was disappointing; there is no sense in saying otherwise. I felt particularly aggrieved. I do not think it is too late for the Minister to take the issue back to his Department and see whether it is possible to change that decision.

Cystic fibrosis is a genetic condition affecting more than 10,600 people in the UK. One in 19 people in the UK is said to carry some types of the cystic fibrosis gene. Cystic fibrosis accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. If we add up those costs and the ongoing visits to the GP, there must be a financial argument to make CF an exempt condition. I would suggest that there might be a cost saving in that process.

Given that cystic fibrosis impacts so many people daily, not only in Northern Ireland but across the UK, I believe there are further steps the Government can take to ensure that prescription charges are waived. I had a debate on asthma here about a month five weeks ago, which raised concerns about why people with lung conditions are not on the Government exemption list. Lung disease is the third-largest killer in the UK, and at least one in five people will develop a lung condition in their lives. A recent survey showed that 57% of people skipped getting their prescriptions for asthma, as they struggled to afford it. In our society, in this day and age, I find it incredible. There are questions that people need answered.

I do not see it as acceptable that people with lifelong respiratory diseases must pay up to £100—or £104, as the hon. Member for Bristol East said, to be exact—for prescription charges each year. Through a series of parliamentary questions, I asked the Government why there are still prescription charges for lung diseases. The Minister knows that I am fond of him, but I am really disheartened that the Government will not take this small step, for a small cost, to make their life slightly easier. There are many leading charities and organisations that provide the best support for people suffering from cystic fibrosis and other respiratory diseases, but it should not be solely down to them to fix the problem.

My request to the Minister is simple. I urge him and his Department to hear the pleas of the hon. Members for Bristol East, for Ashfield and for Blackpool North and Cleveleys, who each gave personal examples of people affected. I have constituents who are affected. In Northern Ireland, they are fortunate enough that their CF drugs are being paid for. I am asking the Minister here, in the mother of Parliaments, to take our case to the Secretary of State for Health or whoever it needs to be presented to.

The fee may not seem like a lot, but it is to families on lower incomes, who simply cannot work due to diseases like cystic fibrosis. Over the years, I have had constituents come to see me. It is tragic to watch people with cystic fibrosis gasping for the breath that we take for granted. My plea is on their behalf. The fee is a large chunk of money for something they cannot control and will never go away. For the one in five that will at some point be diagnosed with a lung disease, I urge the Minister, who is a good man, to take immediate action and follow closely behind Northern Ireland, Scotland and Wales and remove—immediately if possible, or tell us when it can be done—prescription charges.

--- Later in debate ---

[The Minister for Health (Edward Argar)]

It is a pleasure as always to serve under your chairmanship, Mr Sharma. I congratulate my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) on securing this important debate and thank all hon. Members who have taken part. Although this issue falls within Lord Kamall’s ministerial portfolio rather than mine, it is privilege to answer in this place and to engage in this debate.

Nobody here today, and nobody viewing our proceedings or reading them when they are written up in Hansard, can fail to have been moved by the experiences and stories that we have heard. Hon. Members on both sides of the House told moving stories about their constituents—in the case of my hon. Friend the Member for Ashfield (Lee Anderson), who spoke of his very personal experience, it was his wife, Sinead. As hon. Members have said, it is always incredibly powerful and moving in this place when an hon. Member is willing to share their own experiences, not just with this House and colleagues but essentially with the public. It was powerful, it was personal and it was poignant, and I thank him for that.

I also thank the hon. Member for Bristol East (Kerry McCarthy) for her contribution, in which she set out—again, very movingly—very personal stories, to make this real. It is very easy in this place for us to slip into talking about policies and grand strategies and to not always relate that to people and individual lives and experiences. I am very grateful to the hon. Lady. I do not always agree with her on everything in a political context, but I certainly agree with her on EDMs. I share the experience. I remember Bob Russell from the time before I was a Member, when I worked for previous Members in this place. I admire his belief in the power of EDMs, although I have to say that I do not share it and, like the hon. Lady, I occasionally have to explain to constituents and others who understand-ably think that an EDM moves the agenda forward, that it rarely does, but that it may, on occasion, put down a marker.

As ever, I am grateful to the hon. Member for Strangford (Jim Shannon) for his comments. He mentioned that he has been in just about every debate on this subject, along with the hon. Member for Bristol East. Given his assiduity in attending debates in this House, that could be said for a vast array of subjects, on which he has given well-informed and eloquent contributions, not only representing his constituents, but putting issues of national concern on the agenda.

[Jim Shannon]

The Minister referred to the former Member, Bob Russell. I recall him standing at the door to be No. 1 on EDMs. I put in at least two EDMs every week. Their purpose is not to change policy, but to raise awareness or congratulate some person or group that has been active in the community. For me, that is what EDMs are about.

[Edward Argar]

I am grateful to the hon. Gentleman for his spirited defence of early-day motions, of which he makes powerful use, as he does with every opportunity he has to speak in this place.

My right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) is no longer able to be here, but he made a valuable contribution, and I am grateful to you, Mr Sharma, for allowing him to speak—even if, as a former Minister, he should have known better the consequences of seeking to tempt me to make policy at the Dispatch Box without cross-Government agreement, which might have led to an early termination of my ministerial career. He made a powerful point, as all hon. and right hon. Members have done, and I will turn to some of those points in a moment.

Before I do so, I want to recognise the fantastic work undertaken by the Cystic Fibrosis Trust, which does a fantastic job on behalf of people living with cystic fibrosis and their families, and in bringing the condition and the needs of people with it to the attention of this House, and more widely. I also acknowledge the work of the Prescription Charges Coalition, of which the Cystic Fibrosis Trust is a member. It has worked tirelessly to raise awareness of the help available to patients with the cost of their prescriptions and campaigns on an issue that its members feel strongly about. In our democracy, whether or not we agree on the policy position, it is right that we recognise those who get out there, campaign and seek to drive change and policy. It is important to recognise those who are active in our democracy in that way.

As we have heard, cystic fibrosis is a life-limiting condition affecting many thousands of people in the UK. It is not only a life-limiting disease but, as we heard from my hon. Friend the Member for Ashfield, a disease that can impact on the quality of life and the life experiences of those affected and their families. While there is no cure for cystic fibrosis, there are treatments available on the NHS to help reduce the effect of symptoms and make it easier to live with.

It is not that long ago that conditions such as cystic fibrosis saw life expectancy so low that many were advised not to expect to live beyond their teens. Thanks to advancements in treatments, better care and the work of organisations such as the Cystic Fibrosis Trust, people with cystic fibrosis are now living for longer, with a better quality of life, with half of those with the condition living past the age of 40. Children born with cystic fibrosis today are likely to live longer than that. That is a positive story and a reflection on our medical and scientific advances.

I turn to the crux of the debate. When the medical exemption list was drawn up in 1968 in agreement with the British Medical Association, it was limited to readily identifiable, permanent medical conditions that automatically called for continuous, lifelong and, in most cases, replacement therapy without which the patient would become seriously ill or even die. As the shadow Minister, the hon. Member for Enfield North (Feryal Clark), alluded to, there has been a review since 1968—only one—which resulted in the addition of cancer in 2009.

When the exemption list was drawn up, decisions on which conditions to include were based on medical knowledge at the time—for instance, children with cystic fibrosis were not expected to live to see adulthood—and it is entirely understandable that, given advances in treatment and increases in life expectancy, those who are now living with cystic fibrosis for a lot longer should wish to pursue exemption from prescription charges to help them maintain their quality of life with the drugs that are essential to their quality of life. The issue of prescription charges was reviewed more broadly in the round in the 2010 Gilmore report, which did not recommend further changes at that stage.

As the hon. Member for Enfield North alluded to, I know that the answers that Ministers have given, stating that the Government have no immediate plans to review the list, will have caused disappointment to right hon. and hon. Members and to those with this condition. We do think it would not be right in this context to look at one condition in isolation, separate from other conditions, because others would rightly argue that their condition was potentially equally deserving of an exemption if it fitted the same criteria. My hon. Friend the Member for Blackpool North and Cleveleys has rightly advanced the case of cystic fibrosis, and I entirely understand why, but I know that he will also recognise that other conditions might qualify for consideration in the same way, or for the same case to be made for them by right hon. and hon. Members.

When the exemption list was first put in place in 1968, 42% of items on prescription were free; now 89% are free. There has been considerable change in that space, but to go to the heart of what right hon. and hon. Members have asked for today, were my right hon. Friend the Member for South Holland and The Deepings in his place, I would disappoint him by saying that, as he will appreciate, I cannot make policy standing at the Dispatch Box. It is important that everything is considered carefully. Although this is not my policy, I will continue to reflect on the points that have been made by right hon. and hon. Members today and by campaigners on this issue. I will also ensure that I will not only speak to my noble Friend, the Minister with portfolio responsibility for this issue, but draw to his attention the transcript of today’s debate.

[Edward Argar]

I am grateful to the hon. Lady. She may or may not always agree with me, but I will always endeavour to be straight with the House, even when the message may not always be the one that Members want to hear. I cannot stand here now and say that there will be a review of that list; it is important for me to be honest with her. What I can say—which she may feel is insufficient, and I entirely respect her if she does—is that I will reflect on the points made today and the issues raised. I will discuss this issue with my noble Friend and ensure that the points that have been made in this debate are conveyed to him, but it would be wrong of me to commit to something that I am not in a position to commit to. The hon. Lady rightly presses her case, but I know that she will appreciate my position, and it is important that I am honest with the House in that respect.

I touched on the help with prescription costs previously, and the number of items. While I know that this is not at the heart of the point made by my hon. Friend the Member for Blackpool North and Cleveleys, it is still important that I put on record the point that I alluded to: when medical exemptions were introduced, only 42% of all NHS prescription items were dispensed free of charge. That figure is now around 89%, and around 60% of the English population do not pay prescription charges at all. Many people with medical conditions not on the exempt list already get free prescriptions on other grounds, as my hon. Friend the Member for Blackpool North and Cleveleys said, with current exemptions providing valuable help for those on the lowest incomes.

[Jim Shannon]

In my contribution, I referred to Scotland, Wales and Northern Ireland, where prescription charges are free. I have knowledge of Northern Ireland, though not of Scotland and Wales, and understand that we follow the rules of the National Institute for Health and Care Excellence in the UK but have some liberty about what we add on. I understand that the Minister is not responsible for this. He is a good man who has been honest with us. What we wish to be conveyed from this debate, to the person who is responsible, is that the same should happen here as in Northern Ireland, Scotland and Wales.

[Edward Argar]

I am grateful to the hon. Gentleman. I will finish the point I was making and then respond to his. We have already heard about the annual certificate, which can be purchased by direct debit in instalments, meaning that a person can have all the prescribed items they need for just over £2 a week. I take the point from the hon. Member for Bristol East that that may still not solve the problem for everyone, but that route provides a significant potential reduction in costs.

I shall now respond to the point raised by the hon. Member for Strangford on the devolved Administrations, and the broader approach to prescription charges. Although we have surprisingly managed to stray away from it for quite a while, any debate on this subject will touch on the different positions of England and the devolved Administrations, given the latter’s abolition of charges for prescriptions. I suspect that many people will ask why there is that difference in approach. Health is a devolved matter and the devolved Administrations have full discretion over how they spend their budgets and the choices they make, presumably choosing to spend a proportionately larger share of those budgets on prescriptions.

We have opted for a different approach in England. We also recognise that prescription charges, more broadly, raise significant revenue, which provides a valuable contribution directly to NHS services in England. In 2019-20, they contributed just over £600 million in revenue to NHS frontline services. There is always a balance to be struck, and I suspect that we shall return to this topic, with Members taking different views.

With regard to the key point made by the hon. Member for Strangford, although I am not directly responsible for this area of policy I will continue to reflect on that. In this House, there are times when individual debates or speeches—I look at my hon. Friend the Member for Ashfield—resonate, and cause Ministers to turn them over in their head and reflect on the points made. All hon. Members will be able to point to speeches they have heard on different topics in the main Chamber that stay with them. They go away from that debate, still reflecting on what that right hon. or hon. Member has said. My hon. Friend the Member for Ashfield has had that effect today. I will reflect carefully on what he said, within the context that I cannot make policy at the Dispatch Box. In response to the point made by the hon. Member for Strangford, I will pick up that issue and convey the sentiments of Members speaking today to my noble Friend Lord Kamall, and ensure that he has a copy of the transcript of the debate.

I conclude by thanking all hon. Members for their contributions. Often, people judge what goes on in this place by the half an hour or 40 minutes that they see at 12 noon on a Wednesday on both sides of the Chamber and what happens there. Many people do not see what happens in Westminster Hall, where, in a measured and sensible way, people can discuss, debate and sometimes disagree on issues that really matter and impact on the lives of individuals or particular groups of people. This debate is one that those that clears a very high bar for the quality of the contributions, for the importance of the subject and for its ability to cause us to leave this Chamber continuing to reflect on what we have heard.

NHS Hysteroscopy Treatment

Jim Shannon Excerpts

Monday 31st January 2022 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab)]

I am, frankly, very disappointed to have to be raising this issue again in this House. This is the ninth time I have spoken about this, and it is more than eight years since my first speech on this topic. However, the problem of pain and trauma caused during hysteroscopies has not gone away. I want to pay tribute to the Campaign Against Painful Hysteroscopy, who do so much to let women know that they are not alone, that their experience has not been singular, that they were not making it up and they were not hysterical; they were experiencing great pain and discomfort. That campaign offers comfort and a productive outlet for their utterly justifiable anger. My hope is that this Minister will not only take this issue away, but will commit today to getting action at a national level, because it is a true scandal that these horrific abuses are still taking place. Let me be really clear with people. Every time I speak, I have new stories, because women hear my speech as they reel from fresh abuses and they get in touch. So all these stories that I am going to recount today have happened since my last speech on this issue.

I will start with the story of Jane, who had a hysteroscopy late last year. Jane had been warned by her excellent GP that the specialist might attempt to talk her into a hysteroscopy without anaesthetic, and that she had the right to insist on proper pain relief. After all, she has several well-recognised risk factors for pain during hysteroscopy, including endometriosis, a tilted uterus, and never having had children. Fully aware of that, Jane received a letter for an appointment about the results of an ultrasound scan she had had. The letter said nothing about a hysteroscopy, and nothing about her risks or her right to anaesthetic, so she went along expecting simply to have a discussion with a consultant about the results of the scan. But when she got there, she was informed that the consultant wanted to do a hysteroscopy there and then. She said immediately she wanted a general anaesthetic, and explained that she had had terrible pain from similar procedures in the past. Shamefully, the consultant’s response was to laugh in her face and say

“if we gave a general anaesthetic to every woman who had a hysteroscopy the queue would be a mile long”.

To laugh at a woman in distress in that position, I find abhorrent.

Jane was scared. She shook but she felt she had no choice but to comply. She told the doctor and nurse what she had heard about the pain, but they told her not to believe everything she read. She told me that

“as soon as the speculum went in I felt immense pain that was absolutely unbearable...the doctor was having difficulty finding the opening to my cervix so twisted the speculum and dug around, which caused indescribable pain, I felt I might pass out, I had tunnel vision”—

and she was “shaking and hyperventilating.”

At that point, thank heavens, the procedure was stopped but, unbelievably, the doctor said that he simply did not understand why Jane was in so much pain and causing such a fuss, which only worried her more, because it increased her concern that she had cancer. Even after all that, the doctor was still unwilling to consider a proper anaesthetic. Instead, he prescribed a hormonal pessary and suggested that she come back for another go in a fortnight.

Jane was in a fog. She does not remember anything other than getting home and curling up on the sofa, shaking with shock. She has relived the experience over and over, unable to move on because of the threat that she would have to go through it all again without pain relief. She has had trouble sleeping and has had to take time off work because she cannot concentrate. Understandably, Jane believes that she has post-traumatic stress disorder. She told me that she was actually more afraid of having another brutal experience than she was of dealing with possible cancer. How much will the late detection of cancers resulting from this fear cost our NHS and our families? I emphasise to the Minister that this is not major surgery; it could be essentially painless if only proper anaesthetics were offered.

The last I heard, Jane will now have a hysteroscopy with a general anaesthetic. I am praying that she does not have cancer, because if she does, the months-long delay caused by her mistreatment and the callous attitude of that doctor could be deadly to her. What estimate have the Government made of the added cost of failed hysteroscopies that must then be repeated with anaesthetic? Jane is not alone in her experience and in having understandable distrust of the NHS and doctors as a result of her trauma.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on her speech. I was there the last time that she brought this issue to the House, as I am tonight, because my wife has been through the experience that the hon. Lady referred to. As a result, I think it is important that I am here to support her not just for my wife, but for every other lady across the United Kingdom. Pain relief is a way of providing much needed reassurance for women who are having hysteroscopies. This is a potentially life-changing treatment and women must be enabled to be as comfortable as possible—I see how important that is. Some 35% of the women who undergo anaesthesia-free hysteroscopies reported severe pain. Does the hon. Lady agree that the pain medications and anaesthesia must be readily available for those who need it? No one should have to live in this day and age with severe pain that cannot be taken care of.

[Ms Brown]

I agree with the hon. Gentleman and I am grateful for his intervention. I know he has been in these debates with me, and he makes the same point: no woman should have to go through this. No woman should be held down while procedures happen because they are screaming with pain and they want the pain to stop.

Another woman who contacted me about a hysteroscopy that took place last year told me that she had never experienced so much pain—not from a hip operation, nor from having her spleen removed. As a result of her traumatic experience, she now has anxiety and has been prescribed tablets by her GP just to help her function with the day-to-day. Like Jane, she is losing sleep and no doubt her broader health has been harmed by this. She does not know whether she has cancer, but she told me that she is now too scared to go to the hospital for anything.

There are so many stories that I could have told today. I am sent so many of them, despite the fact that the issue does not get a huge amount of press. Women who experience this are seeking out me and the charity I work with to tell us about it. If there were more publicity, more women would come forward. I really hope that the Minister understands that this is an issue of patient safety, but also an issue of common decency. It is an issue of confidence in the medical professions and the NHS, and it will be costing us all, both in money and in lives, because problems simply are not being caught early enough.