Oral Answers to Questions

Ruth Jones Excerpts

Tuesday 15th October 2024 Commons Chamber

[The Minister for Secondary Care (Karin Smyth)]

As Lord Darzi outlined, capital development in the NHS is shocking, with a backlog of £11 billion in maintenance. I would be happy to meet the hon. Member to discuss his problem.

[Ruth Jones (Newport West and Islwyn) (Lab)]

T5. Alan Petersen is a senior pharmacist in my constituency. He tells me that pharmacies have experienced high volatility in drugs pricing and big increases in bills in recent years. At the same time, they are expected to do far more in direct consultation with the public. Given the UK Government’s jurisdiction over funding dispensing services in England and Wales, when do they plan to review pharmacy funding?

[Stephen Kinnock]

Obviously, health is a devolved matter and funding for pharmacies in Wales is the responsibility of the Welsh Government. Nevertheless, I pay tribute to the Welsh Government for securing a deal with pharmacies in Wales in line with DDRB—the review body on doctors’ and dentists’ remuneration—pay recommendations. I know that arrangements in England affect matters in Wales and I am working as a matter of urgency to conclude the consultation on the community pharmacy contractual framework.

Vaping: Under-18s

Ruth Jones Excerpts

Tuesday 2nd May 2023 Westminster Hall

[Dr Hudson]

I totally concur. My hon. Friend has read my mind: I am about to talk about the advertising, the colourful labelling, the fruit flavours and so on, which draw in young people.

I have asked a number of parliamentary questions about vaping, and the recurrent theme in the Government’s answers is that they acknowledge that vapes are not risk free, and that nicotine is highly addictive and can be harmful. Some studies suggest that vaping among young people can be a gateway to risky behaviour such as drinking and tobacco smoking, which would be a perverse thing to happen. Vaping is supposed to get adults off smoking, but if it is leading young people into smoking, that is not a good thing.

[Ruth Jones (Newport West) (Lab)]

The hon. Gentleman is making a powerful speech about the detriment to health of vaping for under-18s. He mentioned a study, but does he agree that there is not sufficient research on under-18s, so we do not know exactly how safe or unsafe these products are?

[Dr Hudson]

I agree. That is exactly right: there is a paucity of data. I will ask the Government and the Department of Health and Social Care to create the datasets so that we can make evidence-based decisions.

Concerningly, ASH Scotland suggests that children with mental health issues including mood disorders and eating disorders, who are among the most vulnerable people in society, are potentially more likely to use vapes. That is a real concern. I am passionate about mental health, especially among our young people, and I urge the Government to continue to protect the most vulnerable. That has been the hallmark of this compassionate Conservative Government.

Anecdotally, we hear much about the impact of these products. We hear reports of children’s sleep patterns being disrupted. They set their alarms for 2 o’clock or 3 o’clock in the morning so that they can vape in the middle of the night to avoid withdrawal symptoms the next day. At school, there have been reports of students leaving lessons and even walking out of examinations because they simply cannot last without the use of a vape. If vaping is having a detrimental impact on our young children’s life chances, this is a matter not merely of health but of social and educational development. One teacher in my constituency noted that the issue is so widespread that vapes are being illicitly traded in the school playground.

I want to touch on the marketing of vapes to under-18s, as colleagues have done. A particular issue with the vaping market is the flagrant targeting of under-18s as potential consumers through trendy advertising on social media. Products are promoted with bright colours and inviting fruit flavours—sweet flavours such as mango, bubblegum and cherry ice.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O'Brien)]

I thank my hon. Friend the Member for Penrith and The Border (Dr Hudson) for securing this very important and timely debate on youth vaping, and for his excellent speech. Lots of Members have made important contributions to policy in this area, and I pay tribute to them for that, as well as for their contributions today.

Until recently, our regulations—including on the minimum age of sale, advertising restrictions and the cap on nicotine levels—have been reasonably effective at keeping the rate of vaping among under-18s low. However, over the last 18 months we have seen a surge in the use and promotion of cheap, colourful products that do not always comply with our regulations, and there has been a sharp increase in the number of children vaping. NHS figures show that 9% of 11 to 15-year-old children used e-cigarettes in 2021—up from 6% in 2018. That is a big concern, because there is every reason to think that the rate has continued to go up.

We know that vapes are not risk-free. Nicotine is highly addictive and can be harmful, and there are unanswered questions about the effects of long-term use, as the hon. Member for Newport West (Ruth Jones) pointed out. Our message is very clear: vapes should not be used by people under the age of 18, or by non-smokers. That is why I announced on 11 April that we are stepping up our efforts to stop kids getting hooked on vaping. First, we launched a call for evidence on youth vaping to identify opportunities to reduce the number of children accessing and using vape products, and to explore where the Government can go further. That call for evidence explores a range of issues, including how we ensure regulatory compliance, the appearance and characteristics of vapes, the marketing and promotion of them, and the role of social media. My hon. Friend the Member for Eastbourne (Caroline Ansell) rightly talked about them being stacked up like sweeties, and that concerns me, too. On the other hand, my hon. Friend the Member for Northampton South (Andrew Lewer) warned that this is not a straightforward matter to regulate, and pointed out the need to avoid counterproductive changes that stop people swapping from smoking to vaping.

Our call for evidence will also seek to ensure that we understand the vaping market better. It will look at such issues as the price of low-cost products. The call for evidence also considers the environmental impact of vapes, particularly the disposable ones that have become so appealing to young people.

[Ruth Jones]

The Minister is talking about the environmental impact. How closely is he working with Department for Environment, Food and Rural Affairs colleagues to ensure recycling, and to ensure a circular economy in the precious metals mentioned, which must be brought back into the economy?

[Neil O'Brien]

Closely. I am also listening to my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), who has led discussion on the subject through her ten-minute rule Bill. She is right to be concerned about the environmental impact of disposable products. The proportion of young people using those disposable products has gone up from 8% in 2021 to 52% by 2022. Clearly, they are an important part of youth vaping.

Down Syndrome Bill

Ruth Jones Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Dr Liam Fox (North Somerset) (Con)]

I beg to move, That the Bill be now read the Third time.

May I begin by thanking Members on both sides of the House for the support that they have given the Bill from the very outset? There are not many things that justify the downsides of being a Member of Parliament, but this is certainly one of the upsides—when we can see what will inevitably be a crisis emerging and do something about it in due time. That is one of the privileges given to us, and I am grateful to Members for their support in taking the Bill forward. They have not only supported it here in the House but advocated for it outside the House, where it has become one of the best-known private Members’ Bills in recent times in terms of public awareness of what is happening. That matters a great deal, because the Bill is not exactly the same as it was when we considered it on Second Reading—a subject that I will come to in a moment.

The most common question that I am asked is, “Why have you been so concerned with this issue?” I explained on Second Reading that when I was growing up, the boy next door to me had Down syndrome. As a GP, I saw a number of those with Down syndrome and their families, and I saw the difficulties that they encountered. We regularly see one of my friends in my constituency, where I live, whose son Freddie has Down syndrome. As Members of Parliament, we have all recognised that having someone in the family with Down syndrome is not just a single problem to be dealt with; it is a conglomeration of problems. Families find themselves fighting on a number of fronts to get the quality of care that, frankly, they already have a right to. For me, that was why we needed a separate Bill.

All Members will have had letters asking why the Bill could not have been wider—why we could not have included more conditions in it. I suppose there are two answers to that. The first is that private Members’ Bills have to be short and concise if we are going to get them through. Let me be very frank: getting a foot on the ladder of legislation in areas such as this is crucial. If we reach for too much in a private Member’s Bill, we can end up with zero. I think we have set the appropriate level of ambition in this Bill.

We also have to recognise the complications that come with an extended Bill when it comes to the view of the Treasury. Many years ago, I was in the place of the Lord Commissioner of Her Majesty’s Treasury, my hon. Friend the Member for Castle Point (Rebecca Harris). It is definitely a case of gamekeeper turned poacher, but you learn a great deal as the gamekeeper for when you have to be the poacher later on when it comes to private Members’ Bills. I put on the record my thanks to her for her help. The role of the Friday Whip is not well understood outside Parliament, but when they are on your side, they can be very powerful allies indeed, and her support is very much appreciated.

We also wanted the Bill to be separate because it is about a definable group in the population. Down syndrome is not something where there is any dubiety about the diagnosis and, as I said, there are complex identifiable needs. For example, we know that those with Down syndrome have a higher level of issues such as congenital heart disease, they have a higher instance of leukaemia, they have myriad ear, nose and throat problems, and the earlier they are dealt with, the better. It is difficult enough for parents to be fighting waiting lists and fighting to be regarded with sufficient urgency; if they are also dealing with the education system and trying to get help for a learning disability, that is an additional problem.

The successes in medical care are the main driver for the Bill. When I was growing up, that boy next door had a life expectancy of 15 years. When I became a doctor in 1983, the life expectancy was about 30. Now, it is about 60. We should all be extremely grateful for that, but, as ever with advances in medical science, it brings its own problems. The problem, if we want to see it as such, is that parents will have this extra worry: “What will happen when I’m not there?” That is why I referred at the very beginning to a perfectly identifiable crisis that is on its way to us. If we actually take measures now, we can prevent individual tragedies. If there is a real justification for Members of Parliament having their own constituencies and dealing with real people, rather than being creatures only of a political party, it is that constituency link, which tells us about problems that need to be addressed and gives us the early warning sign to pass legislation to be able to deal with them. The complexity of the issues is one reason why we need separate legislation and why we had to bring different provisions into the Bill as it comes back for Third Reading from when it left the House after Second Reading.

[Ruth Jones (Newport West) (Lab)]

The right hon. Member is making such a powerful point. He and many other Members have had numerous letters questioning the narrowness of the Bill. Will he reassure us that this is only the beginning and most definitely not the end of the process?

[Dr Fox]

Indeed. I would not even say it is the end of the beginning. It is on the way to being the end of the beginning, but this will be a perpetual battle. So long as medical science is able to make advances in genetics and immunology, this process will continue into the future and we will need to look at it. It is worth pointing out, to answer the hon. Lady’s question more directly, that we considered this in Committee. The Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), made it clear that in the guidance that will be issued, which I will come to in a moment, it is entirely possible to deal with the effects of other conditions that may have the same effects as those emanating from Down syndrome. In a way, yes, we are starting the process, and the way in which we change the Bill is absolutely key to that.

On Second Reading, I think it is fair to say, because we can be a little self-critical, that this was a well-meaning Bill that went as far as we could. However, I made it clear that one big issue was missing—the enforcement of rights. It is all very well to make available new provisions and rights in law, but if an individual or parent does not have the ability to enforce those rights, if there are no mechanisms or levels to pull to enable them to get the full benefit of what the legislation supposedly gives them, ultimately we are failing to achieve what we want. We discussed two major issues. I purposely left them out of the Bill on Second Reading because we were not ready. There is nothing worse than poorly-thought-out legislation that we have to come back and amend. It is far better to think the process through, get agreement on both sides of the House and with the Government, and then proceed on the basis of unanimity, as happened in Committee.

The changes were essentially twofold. The first was getting agreement from Ministers that they would issue guidance to local health and education bodies and planning authorities to ensure that healthcare, education and long-term care issues would be properly taken into account. That was a major step forward. Again, it answers the question of how we can broaden the effects of the Bill, even with measures that are not in the Bill. That means looking at other conditions that will face the same problems as created by Down’s syndrome. However, that agreement created its own parliamentary problem for us, because as those who listen to debates in the other place will know, guidance issued by Ministers that is not laid before Parliament creates a potential democratic deficit. That is why I think it was the first major step forward for the Bill in Committee when the Government agreed not simply that the Minister would issue guidance, or that that guidance could apply directly to the various bodies concerned—another important step in itself—but that that guidance would be laid before Parliament.

Up to that point, I had considered whether we needed to put a sunset clause in the Bill, to have it completely reviewed to see whether it worked in practice. The fact that the guidance will be laid before Parliament enables us to look in real time at what is happening, including parliamentary Committees looking at how the guidance actually works. That is a huge step forward. I think it is actually precedent-setting and turns this from a nice Bill into a cutting-edge and meaningful Bill. That is a huge achievement and one thing for which the Bill will be most remembered.

Cystic Fibrosis: Prescription Charge Exemption

Ruth Jones Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

I beg to move,

That this House has considered prescription charge exemption and cystic fibrosis.

It is a pleasure to serve under your chairmanship, Mr Sharma, and to open this debate on a matter that I know is of very great interest to a significant number of people in the country. I am very grateful to all those who have emailed me over the past few days since the debate was announced, not least those who contributed via the Chamber engagement programme that the House of Commons runs. Their comments and insights have certainly deepened my understanding, and I hope that their contributions will enrich the debate in particular. I am also grateful to the Cystic Fibrosis Trust for its members’ contributions, and for the support and briefings that it has given me.

I am sure that hon. Members here today are more than aware of cystic fibrosis. It is one of the few serious, life-threatening, chronic conditions for which people are still required to pay prescription charges. The Cystic Fibrosis Trust estimates that there are around 2,500 people in England who did not qualify for free prescriptions and are faced with a lifelong financial burden. Indeed, the Cystic Fibrosis Trust calculates that there are now more adults than children with cystic fibrosis.

This issue has concerned me not just over the past few weeks but for 25 years, since I was first diagnosed with epilepsy. The consultant told me, somewhat bizarrely, that one upside of the diagnosis was that at least I would now get free prescriptions. I said, “What?” That was news to me; I was not even aware such a thing existed. I had not required medication for my cerebral palsy, and had been a relatively healthy teenager. It had never occurred to me.

At the same time as I had the good fortune to be diagnosed with epilepsy, I had an even weightier burden to carry: I was the health policy officer for the Conservative party, as we languished in opposition. It was a slightly odd time, I have to say—perhaps that gives hope to those opposite that all things change in time. I not only had to deal with the somewhat bizarre queries of Ann Widdecombe at 6 am when I rang her up, but got to see all the briefings and lobbying that came across my desk. One of the early ones was from the Cystic Fibrosis Trust, telling me about the particular predicament that its members were in: not being entitled to free prescriptions. I thought to myself, “How perverse! They have a lifelong, life-limiting, chronic condition for which they cannot get prescriptions, yet, for my epilepsy, which is chronic and can have devastating consequences, I do get free prescriptions.”

It is not just a case, like mine, of taking some five tablets over the course of the day to manage epilepsy. As Gayle told me,

“My daughter takes more than 50 tablets a day to treat the condition. When you compare this to other serious lifelong conditions that are exempt from prescription charges it is impossible to understand why CF is not included and this outdated decision needs to be rectified”.

The lack of an exemption leads to some perverse situations. As Sarah told me,

“Thankfully I developed diabetes, which is a horrible thing to be grateful for. As a result of getting another health condition which comes with more challenges for my health, it meant I was exempt from paying all prescription charges”.

Go back to that first word that she used: “Thankfully”. What a bizarre thing to have to say with regard to diabetes.

At this point, I should pay tribute to someone who is not here today: Bob Russell, the former Member for Colchester, whom older Members here will know well. He campaigned non-stop on this issue. It is worth cycling back to what he said in 2013, the last time that we debated this issue in the House. He said:

“Those with long-term conditions do not choose to be ill. They face a daily routine of various types of medication and physiotherapy to maintain any quality of life.”—[Official Report, 10 July 2013; Vol. 566, c. 511.]

Those words are as true today as they were back in 2013—and back in 2003, 1993, 1983 and all the other many times that this issue has been discussed.

When I first researched this issue 25 years ago, I was even more surprised by the fact that the exemption list was based on a list of conditions that had not been reviewed since as far back as 1968—before man had made it to the moon—with the exception of the addition of cancer in 2008. My contention to the Minister today is a simple one. It is the one I urged my right hon. Friend the Member for North Somerset (Dr Fox), when he was shadow Health Secretary, to pose to the then Health Secretary Alan Milburn in 1999. Why has the list not been reviewed since 1968? People live with cystic fibrosis well into adulthood these days, which was not the case in 1968. Why can we not review matters and take modern medicine into account? In particular, why is it fair for me to get free prescriptions when they cannot?

As Anna told me:

“The exemption list was introduced in 1968 when children born CF were not expected to live to their teens. Now more than ever, with the life-changing personalised medicines that are available to the majority of CF patients, life expectancy will be massively increased. Therefore, CF should be reconsidered for exemption as most patients will now be living relatively normal lives.”

[Ruth Jones (Newport West) (Lab)]

I thank the hon. Member for giving way; he is making a powerful speech. As a former physiotherapist who used to treat children and young people with cystic fibrosis, I know exactly the point he is making. Living in to adulthood is fantastic and brilliant, but people are being penalised. Is it not right that those people should not have to worry about having to take medication? It should be a right.

[Paul Maynard]

The hon. Lady is exactly right, and I will demonstrate why with a few examples from people with CF. For those living with CF, medication, physio and general health all have to be considered when planning the simplest activity. Being unwell frequently interferes with work and education. As Sam says:

“Due to the nature of the illness I have been unable to work full time after previously trying. Prescriptions is another cost I have to pay despite barely getting any financial support from the government. To me it shows a lack of understanding the fact the medication ultimately contributes to us staying alive and gives us the best chance of trying to contribute to society.”

We could easily be having a debate about other long-term conditions, such as asthma, which are not included either. I could point to transplant patients, a category that would not have existed in 1968 but who rely on drugs to sustain their lives. If any Scottish National party or Plaid Cymru Members were present, they might have cited the example of prescription charge regimes in Wales and Scotland. Opposition Members might bring up the claims and calls of the wider Prescription Charges Coalition. I will leave it to them to make those points; those views are not necessarily shared by Government Members.

I want to focus, laser-like, on this single issue. We have seen in today’s newspapers the success that such an approach can have. The long campaign on hormone replacement therapy by the hon. Member for Swansea East (Carolyn Harris) finally got some good news. It is clear that we need to undertake a thoroughgoing review, setting out what conditions have been brought into scope since the Medicines Act 1968, through advances in medical science. Those might be conditions that did not, or could not, have existed in 1968, or conditions where life has now been further prolonged.

I am sure I can predict some elements in the Minister’s reply, because they were made by former Labour Ministers and in 2013. I am sure we will hear of the wonders of prescription prepayment certificates at just £2 a week—what could be better value? That is less than the price of a cup of coffee at Costa. But many living with a long-term medical condition such as CF can be economically disadvantaged by their condition, by prescription charges and by paying for the annual prepayment certificate, which costs £108. That adds to their financial burden.

According to the Cystic Fibrosis Trust, about one in 10 people with CF—just under 1,000 in the case of that survey—received emergency grants of about £150 from the trust in 2020-21. More than half of those grants were awarded for daily living costs, such as food. As Tracy told me:

“A few years ago I had to take redundancy due to ill health…I had previously paid for a prepaid prescription certificate but could not afford to renew it when it ran out. After 3 months without medication, I was in a poor state of health, constantly coughing, very weak, unable to lie down or even sleep sat up due to the accumulation of mucus in my lungs. After 4 nights without sleep I saw my GP who gave me a prescription for a strong course of antibiotics and steroid tablets. We had to miss a payment on a household bill so that I could pay for my prescription. The first course of antibiotics didn’t clear the infection, so I needed a further one. I had to borrow money from a family member to pay for it…Eventually, I was able to claim PIP which allowed me to pay for my own prescriptions again. I consider myself lucky to have someone who was able to help me out when they saw how ill I was.”

There is also a serious risk that those who incur prescription charges for their CF may not take their essential medicines, particularly if they are experiencing financial hardship, or in higher education on a limited income. Over a third of those who replied to the Cystic Fibrosis Trust survey said that they had not taken medication because of the cost of prescriptions. As Anna told me:

“During university I didn’t take my medication simply because I couldn’t afford the fees. The blunt fact here is that people with CF take anywhere from 10-30 different medications a month. People with CF have been charged an insane amount of money when there is a system in place meant to protect people with long-term health conditions from being financially penalised—however they are being kept from the exemption list.”

The cost to the Government of righting what I believe to be a moral wrong is £270,000. As a former Minister, I know that that sort of money can often be found with a good rootle down the back of the ministerial sofa—a bit of jingling of the coins. However, there must be darker, deeper and slightly odder reasons why successive Governments—of all colours, and I look across the Chamber as I say that—have refused to review the 1968 list, despite all the pressure and reasonable arguments to do so. I cannot begin to imagine why Ministers are saying no.

If anyone wonders what this change might mean for CF patients, they should listen to Mario:

“My partner would then feel supported by the government rather than left on her own. The relationship to her medicine would change from financial to purely medical. Support, hope and fairness is the minimum we ought to give to people with life-threatening long-term conditions such as cystic fibrosis.”

Or listen to Donna:

“CF patients have enough problems to face, we should do anything we can to help. CF drugs may be expensive, but lung transplants cost even more.”

I will leave the final words to Sharon, another survey contributor:

“I would have more money available to pay for life’s other essentials. It would be pleasing to see the end of an injustice as I have no choice but to take this life lengthening medication and shouldn’t be required to pay for it when if I had been born with another condition, I wouldn’t have to.”

I hope that the Minister listens to those pleas and reasonable questions, and sets out the Government’s agenda to right what I believe to be a wrong.

[Kerry McCarthy (Bristol East) (Lab)]

It is always a great pleasure to see you in the Chair, Mr Sharma, and I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing this debate.

As some Members might know, I have a personal interest in this issue, as my niece Maisie has cystic fibrosis. She was diagnosed when she was just a few weeks old. Actually, it was during that little period after Christmas: it was her mother’s birthday on 28 December and her dad’s birthday on the 30th, and she was taken to hospital because her progress had started to go backwards. One of the welcome developments since she was born is that there is now a heel prick test, so that newborn babies are screened for CF, which prevents people from having to go through a similar situation.

Maisie is one of those who is benefiting from access to the new drugs that have been developed recently, and at 17 she is doing really well. The same is true of one of my constituents, who is just a little older. His dad tells me that it is as if he had never had cystic fibrosis. That is great news and I congratulate all those who have been involved in developing these drugs—Kalydeco, Orkambi and its version for children, Symkevi, and Trikafta—and in making them freely available on the NHS. The former Health Secretary, the right hon. Member for West Suffolk (Matt Hancock), was obviously instrumental in that process and I thank him for it. Of course, I also thank the Cystic Fibrosis Trust for spearheading that campaign.

I also want us to remember those for whom these medical advances came too late. My constituent Lee Partridge tragically lost both his daughters to CF: Richelle at the age of 26 in 2015, and Lauren at the age of 19 just a few months later in January 2016. Perhaps if they had been born a decade later, the new drugs would have saved their lives. These medical developments happen so quickly. No sooner had the campaign paid off and Orkambi been approved than Trikafta was suddenly around the corner. I must admit that my sister, Maisie’s mother, did not even realise that there was another campaign to mount because it came so quickly afterwards.

I hope this means that cystic fibrosis will eventually become a condition that people live with to a normal age, rather than being something that they die from. We are here today because while it used to be the case that sufferers rarely survived into adulthood, life expectancy has increased almost fourfold since then and, as we have heard, there are now more adults than children with cystic fibrosis. If that had been the case back in 1968, when the list of exemptions from prescription charges was drawn up, there is no doubt that cystic fibrosis would have been on that list. It seems quite anomalous. We ought to treat conditions like for like, based on need. We cannot live in the past with this fixed state from 1968, which has become pretty meaningless.

Today I have received an answer to a written question requesting the figures for how many adults have to pay for cystic fibrosis prescriptions. I was told that those figures are not collected. We know that about 89% of all prescriptions are dispensed free of charge, but we do not know specifically what that means for adult patients with cystic fibrosis. The Cystic Fibrosis Trust estimates their number to be around 2,500 people in England.

Although the three drugs I have mentioned that target CF at its root cause are free to patients, which is obviously good, many patients often need to pay for additional medication to prevent lung and sinus infections, therapies to aid digestion, antibiotics and so on. Those who live in poorer areas are statistically more likely to contract severe lung infections, meaning that they are more likely to have to pick up the bill for antibiotic prescriptions. Having a lifelong condition incurs all sorts of hidden charges, including the cost of traveling to medical appointments or buying specific foods to cater to dietary needs. We are lucky in Bristol to have both an adult and a child cystic fibrosis unit, but someone living in Milton Keynes, as my niece does, has to travel to Oxford for their treatment. As the cost of living crisis escalates over the coming months, disabled people will face increasing energy bills and food costs, and many will experience the burden of stressful work capability assessments—we know that the Government are bringing in tougher sanctions on jobseekers. Shouldering the cost of a prescription-exempt chronic condition can mean a choice for some people between paying the bills and affording essential meds.

I was recently contacted by Martin, a constituent whose 19-year-old son James has cystic fibrosis. James works part time. Last year, his claim for disability allowance stopped when he reached adulthood, and his personal independence payment application was refused. Martin currently pays for James’s prepaid prescription certificate, but he worries that a change in his own financial situation would mean that he would not be able to foot the bill for his son’s prescription. What is ironic is that Martin himself has insulin-dependent diabetes, which entitles him to free NHS prescriptions. He cannot even begin to understand how he is deemed eligible while his son is not, meaning he does not pay for his own prescriptions but does pay for his son’s.

Martin is not alone in his opinion—96% of people who responded to a Cystic Fibrosis Trust survey described the prescription charges as unfair. It certainly gives rise to the question why CF patients should be treated differently from others with other lifelong conditions that exempt them. I asked the Health Secretary last year whether the Government plan to review the list of conditions exempt from prescription charges. A junior Minister responded to confirm that the Government did not plan to do so.

The former Liberal Democrat Member Bob Russell has been mentioned. I always use Bob Russell as an example of why early-day motions are perhaps not all they are cracked up to be. For years on years—it might have been two decades—Bob queued to be No. 1 on the early-day motion list so he could call for an exemption from prescription charges for cystic fibrosis patients. He always got lots of signatures, because his early-day motion was No.1 and first in the booklet, but we are still here debating the issue. When I am trying to explain to my constituents why my signing an early-day motion will not change the world, Bob is the example I use. It would be lovely if we could move on from having these debates and making the same points over and over again. There is no logical reason for it, other than the point that if the Government reopen the 1968 list they will have to review other conditions as well, because people are living longer due to medical advances. I do not think that is a very moral reason for not doing it.

We get told that patients who are not exempt from prescription charges can apply for a prepaid prescription certificate that costs £2 per week. However, that is £104 per year; everything adds up, and I have already mentioned increasing fuel bills and food prices. That is £104 per year that they should not be paying. Grants are available through charities such as the Cystic Fibrosis Trust to support those in urgent need, but they are in high demand. Between 2020 and 2021, one in 10 people with cystic fibrosis received an emergency grant from the trust; the majority of those grants went towards basic living costs.

There is a serious risk that cystic fibrosis patients who incur prescription charges may avoid taking essential medicines, especially if they are already in financial hardship. People living with chronic conditions in Wales do not have to face the same difficult choice between medication and heating their homes, as all NHS prescriptions are free there.

[Ruth Jones]

My hon. Friend is making a powerful speech. Would she agree with me that, for all of us living in Wales, the fact that all of our prescriptions are free means that people do not have to worry about not having the money to take life-saving medication?

Covid-19 Update

Ruth Jones Excerpts

Friday 26th November 2021 Commons Chamber

[Sajid Javid]

My hon. Friend has made an important point. One reason for the difference between dealing with this pandemic today and dealing with it even a year ago is that we already have more treatments, and my hon. Friend has just mentioned another potential new treatment. I am afraid that I cannot give him any exact date for when we think the trials will be over, but I am pleased that they are taking place. He is right to point to the potential of that treatment, but I can reassure him that whether the UK’s engagement is with ivermectin or with other potential new treatments, it could not be more engaged.

[Ruth Jones (Newport West) (Lab)]

I thank the Secretary of State for coming to the House today to make his statement with such urgency.

A number of high-profile sporting events were due to take place in South Africa this weekend, including the united rugby championship, in which the Cardiff and Scarlets rugby teams were due to play. What assistance has been given to get them home ahead of the midday deadline today? May I also ask what discussions the Secretary of State has had with the devolved Administrations to ensure a co-ordinated, orderly introduction of the new travel restrictions?

[Sajid Javid]

I understand that this is difficult news, whether for the sports teams or the thousands of British tourists and others who currently find themselves in South Africa, Botswana or any of these countries, but I hope that many will understand. Indeed, I have had messages today from people who are in South Africa, saying that this has made their life a bit more difficult when it comes to getting back home, but they fully understand and support the action that has been taken.

The hon. Member asked what could be done to try to get the team back before the deadline. The answer is nothing; we will not do anything to help them get back before the deadline, because for anyone who is in South Africa, the best thing to do is to come back after 4 am on Sunday and go into hotel quarantine.

Chronic Obstructive Pulmonary Disease

Ruth Jones Excerpts

Wednesday 17th November 2021 Westminster Hall

[Ruth Jones (Newport West) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Nokes, and to speak in this important debate today. I am very grateful to my hon. Friend the Member for Weaver Vale (Mike Amesbury) for securing this debate and raising such an important issue. Ms Nokes, you may know that as well as being Member of Parliament for Newport West, I am shadow minister for air quality, so these issues are very important to me.

The link between air pollution and lung disease is obvious to all of us. Before I came to this House, I spent 30 years working as a physiotherapist in the NHS, so I know a little bit about lungs. Thanks to the excellent campaigners at the British Lung Foundation and Asthma UK, we have the data today—the important statistics that we all need. Two in five, or 41%, of babies are born every year into heavily polluted areas of the UK, where levels of particulate matter 2.5 are higher than the 2005 World Health Organisation recommendations. That equates to over a quarter of a million babies every year, or one born every two minutes. Over a third of all maternity units in England exceed the World Health Organisation’s air quality guidance; if we use the new guidelines, which came out a couple of months ago, that figure reaches almost 95%.

We also know that some 85% of people who live in areas with illegal levels of nitrogen dioxide make up the poorest 20% of the UK population. Birmingham, Liverpool and Manchester rank among the top 10 areas with the highest proportion of deprived neighbourhoods in England, and all those cities have main roads that breach legal nitrogen oxide limits. I know from my work with my hon. Friends the Members for Manchester, Withington (Jeff Smith) and for Weaver Vale, as well as the metro Mayors Steve Rotheram and Andy Burnham, how much work is needed to address these issues. Similarly, people in the poorest communities are two and a half times more likely to develop COPD than those in more affluent communities, and we know that disadvantages in early life are linked to the development of COPD. I make no apologies for sharing this data, and I will go on: some 29% of hospitals, 37% of GPs’ surgeries, 31% of schools and 26% of care homes in England are located in communities with levels of PM_2.5 above the levels recommended by the WHO. Of course, those guidelines have been strengthened in recent months, so the pressure on Ministers is even greater now.

The link between toxic air and lung disease is so devastating, and I note that 43% of respondents to the Asthma UK-BLF survey reported that their COPD was adversely affected by air pollution. More broadly, 88% of people with a lung condition have said that air pollution affects their health and wellbeing, so it is not just physical symptoms we are dealing with, but mental health symptoms. Of those who responded to the survey, 63% of people with a lung condition can feel out of breath and 53% have increased coughing due to high levels of air pollution. Some 60% of people with a lung condition affected by air pollution say that they have been discouraged from leaving their home due to air pollution at some point, with 28% feeling this way at least once a month.

This House needs to listen to those affected daily by the impact of toxic air on those living with existing lung disease. In Parliament and out in the community over the past year, I have repeatedly raised the fact that the time to act has well and truly come. Almost 60% of people in England now live in areas where the levels of toxic air pollution exceeded legal limits in 2019 and 2020. We cannot go on as we are: we require real leadership, and we require it now. The Government’s so-called landmark Environment Act 2021 was a missed opportunity to contribute to cross-Government solutions to this problem. I know that much of environment policy is devolved to the nations of the UK, and that health policy is also devolved, but that does not mean there cannot be a co-ordinated approach with the devolved Administrations to addressing this very serious issue. I would be grateful if the Minister outlined the discussions that have taken place, and will take place in the weeks ahead, with the devolved nations.

The covid pandemic saw a big change in people’s behaviour and lifestyle habits, and we saw how that led to cleaner air and a healthier environment, although it was a temporary change. We all know that air pollution is a public health crisis, as my hon. Friend the Member for Weaver Vale has outlined. Last summer, the British Lung Foundation and Asthma UK surveyed about 14,000 people with a lung condition and found that a great many people noticed an improvement in their symptoms, likely due to better air quality during lockdown.

In my more than 30 years working in the NHS as a physio, I saw every day the damage that toxic air can cause to the lungs, health and mobility of people of all ages and from all communities, including those whose lungs are damaged while still in the womb, and those suffering from asthma, COPD and other serious lung conditions. The task of making our air cleaner starts with each of us. It is important that we are all aware of the air pollution levels in the communities we live in, so that we know the local challenges facing us all.

I am so grateful to my hon. Friend the Member for Weaver Vale for calling this debate and providing the opportunity to highlight the very grave link between toxic air and COPD. I hope he will feel better soon. We must act and we must act now.

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you as chair, Ms Nokes. I congratulate my hon. Friend the Member for Weaver Vale (Mike Amesbury) on securing this debate on an important subject.

In my constituency of Blaydon, in the north-east of England, the figures for those diagnosed with COPD are sadly above the UK average. We know that 1.3 million across the UK have a diagnosis of COPD, but it is estimated that a similar number have undiagnosed COPD. In Blaydon, 2.9% of people have a COPD diagnosis, well above the England-wide figure of 1.9%. It is sadly in the top 10% of constituencies with the highest prevalence. The north-east is the region with the highest prevalence of COPD, at 3%. Remember, that figure is for diagnosed COPD. As I have said, it is estimated that double that number have COPD but do not have a diagnosis.

The British Lung Foundation has today—World COPD day—launched its report “Failing on the fundamentals”, based on the largest survey of those with COPD. It finds unacceptable levels of diagnosis and care for those with the condition. In the north-east, 78.1% of survey respondents reported that they had not received the five fundamentals of COPD care, as set out in NICE guidelines, and as referred to by my hon. Friend. That is 4 percentage points higher than the England-wide average of 74.1%.

Some 29.1% reported facing stigma and discrimination, which is similar to the England-wide average. A higher proportion in the north-east cited as barriers to diagnosis not wanting to know if they had COPD and not knowing the signs of potential COPD. In addition, 53% of respondents in the north-east who smoke said that they had been offered support to quit smoking in the past year, slightly lower than the 55.9% across England. As we know, stopping smoking is a key part of the treatment of COPD.

That matters because behind each of those statistics lies a real struggling person. In my constituency office, we see too many people hugely affected by COPD. As the condition develops, they face increasing disability and exacerbations or flare-ups of their condition, affecting their mobility and day-to-day life, evidenced by their need to claim disability benefits. It affects every part of their life, including their mental health. We need to get better at diagnosing and treating COPD, to stop its progression and reduce that impact on daily life. I want to speak in particular about diagnosis and what needs to be done, first, in the recovery from covid and then more generally.

As we have heard, the diagnosis of COPD is appallingly low, and the British Lung Foundation cite several reasons. More than 1.3 million people have a diagnosis of COPD and a similar number have the condition, as yet undiagnosed. The British Lung Foundation’s first annual COPD survey, which was just published, as I said earlier, shows that even before the pandemic, almost three quarters—70%—of people who have been diagnosed with COPD said that they faced barriers in getting a diagnosis. Recent Government figures demonstrate that diagnosis rates, which were already far too low, plummeted further during covid-19. In 2020, there was a 51% reduction in COPD diagnosis compared with 2019, which means that about 46,000 people in England alone missed out on a diagnosis. As we heard, that is a much higher drop than for comparable conditions.

The BLF says that diagnostic tests have still not properly resumed, so it is likely that as many as 92,000 people in England have gone undiagnosed in the past two years. While rates of cancer diagnosis are already up to, and in some areas better than, pre-pandemic levels—thank goodness for that, I hasten to add—there is no dedicated plan to address the huge backlog in respiratory care.

Spirometry is the main diagnostic test for COPD, but it was paused at the height of the pandemic because it was believed to be an aerosol-generating procedure. It has been now confirmed that that is not the case. Guidance has been published on how to conduct spirometry in a covid-safe manner, but it appears to have made little difference. By and large, spirometry testing has still not resumed in primary care, which is where most people with COPD are diagnosed.

[Ruth Jones]

My hon. Friend is making a powerful point. Spirometry is key, because COPD cannot be diagnosed by video link or telephone. Does she agree that it is crucial for people to be seen face to face to ensure that we fully diagnose them in future?

[Liz Twist]

I certainly agree. The British Lung Foundation says that there is a clear need for NHS England to intervene and work with local health services to prioritise the urgent restart of spirometry testing in primary care for the diagnosis of COPD and other respiratory conditions. The same would also be true in the other nations of the UK.

Two of the major barriers to restarting spirometry testing in primary care are a lack of capacity and, ironically, the creation of community diagnostic centres. If rolled out to the recommended scale, community diagnostic centres should help to improve diagnosis of COPD and other conditions, but people with COPD cannot afford to wait until CDCs are established for a formal diagnosis while their symptoms and wellbeing deteriorate. Unless spirometry and other diagnostic tests are restarted in general practice, the diagnostic backlog risks overwhelming CDCs as soon as they are established.

The Government and NHS England need to provide sufficient funding for enough capacity to conduct spirometry testing in primary care. Delays in diagnosis mean that too many people with COPD are seeing their condition worsen, which has the real impact on their day-to-day lives that I talked about, so the problem must be tackled urgently for the sake of my constituents with COPD, particularly those not yet diagnosed.

The Government need to properly fund our public health services. We have to make sure that stop smoking services can be easily accessed by those already diagnosed with COPD and those who may develop it, as the link between smoking and COPD is clear. The proposed updated tobacco control plan, which we are expecting, will play a key part in preventing COPD. It needs to look at the polluter pays principle, which calls on tobacco producers to pay for the damage that they cause, as recommended by the all-party parliamentary group on smoking and health.

Will the Minister agree today to implement the steps proposed by the British Lung Foundation and others to improve diagnosis of COPD as a matter of urgency? Will she commit to improve funding for public health services, in particular smoking cessation services? Will she ensure that the tobacco control plan addresses the issues raised by the APPG on smoking and health?

--- Later in debate ---

[The Minister for Care and Mental Health (Gillian Keegan)]

It is a pleasure to serve under your chairmanship, Ms Nokes, for the first time. I add my thanks and congratulations to the hon. Member for Weaver Vale (Mike Amesbury) on securing this debate, particularly on World COPD Day. We very much appreciate his support for the taskforce for improving lung health. It was also a pleasure to hear hon. Members’ contributions to the debate, and I will try my best to answer their questions.

The Government are dedicated to supporting those with chronic obstructive pulmonary disease, or COPD, which is a lot easier to say. In the last 10 years, we have rolled out guidance and initiatives to support and improve this area.

In 2011, a Department of Health outcomes strategy for COPD and asthma set out a proactive approach to early identification, diagnosis, intervention, proactive care and management at all stages of the disease. A wrong diagnosis will result in patients not getting the care they need, as a number of Members mentioned. That is why in 2013 a guide to performing quality-assured diagnostic spirometry was produced by the NHS, with several charities and other stakeholders. The guide was published to support accurate diagnosis of respiratory conditions and tackle the effects of misdiagnosis.

The national asthma and COPD audit programme was launched in March 2018. Led by the Royal College of Physicians, it aims to improve quality of care, services and clinical outcomes for patients with asthma and COPD by collecting and providing data on a range of indicators. As part of the national COPD audit programme, NHS England and NHS Improvement have developed a best practice tariff for COPD. The tariff is applicable to hospital trusts, in order to promote best practice and ensure improvements in care. Best practice will be considered to have been achieved when 60% of patients admitted for an exacerbation of COPD receive specialist input to their care within 24 hours of admission, and where COPD patients receive a discharge bundle before actually being discharged.

The NHS long-term plan sets out the NHS ambition to improve access to treatments for COPD patients. A date was requested by the hon. Member for Strangford (Jim Shannon). As part of the long-term plan, access to pulmonary rehabilitation will be expanded by 2028. Pulmonary rehabilitation, an exercise and education programme, is one of the most effective treatments for COPD, with 90% of patients who complete the programme experiencing improved exercise capacity or increased quality of life. By expanding pulmonary rehabilitation services over 10 years, 500,000 exacerbations can be prevented and 80,000 admissions avoided.

[Ruth Jones]

I take the Minister’s point about pulmonary rehabilitation being so important—an integral part of the management of these long-term chronic conditions—but 10 years is a long time. People need help now, so what is she thinking in terms of immediately putting into place the extra staff and resources required for pulmonary rehab?

[Gillian Keegan]

I will come to that, and I will also come to the questions about recovery and catch-up, which a number of people mentioned.

To increase access to pulmonary rehabilitation, a population management approach will be used in primary care to find eligible patients from existing COPD registers who have not previously been referred to rehabilitation. New models of providing rehabilitation to those with mild COPD, including digital tools, will be offered to give support to a wider group of patients with rehabilitation and self-management support.

The use of COPD discharge bundles, where appropriate, will also help to increase referrals to pulmonary rehabilitation, and the NHS long-term plan will build on a range of existing national initiatives focused on respiratory disease. The quality and outcomes framework, or QOF, ensures that all GP practices establish and maintain a register of patients with a COPD diagnosis, and the QOF for 2021-22 includes the improved respiratory indicator, including the recording of the number of exacerbations and assessments of breathlessness, and an offer of referral to PR.

NICE quality standards have been published, with the aim of raising the standard of care that those with COPD receive. The NHS RightCare Pathway for COPD is being rolled out nationally. This pathway defines the core components of an optimal service for people with COPD, and it includes timely access to PR as part of the optimal treatment pathway. It provides resources to support local health economies, and the pathway also concentrates improvement efforts on addressing variation and population health.

At the beginning of the pandemic, NICE published rapid guidance on COPD, which outlines how to communicate with, treat and care for patients suffering from COPD. It also outlines how healthcare workers should modify their usual care and service delivery during the pandemic.

Menopausal Symptoms: Support

Ruth Jones Excerpts

Wednesday 9th June 2021 Westminster Hall

[Ruth Jones (Newport West) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Ghani, I believe for the first time, and I very much thank my hon. Friend the Member for Swansea East (Carolyn Harris) for securing such an important debate.

In preparation for this debate, I looked up the definition of menopause. There was a very short phrase that just described it as a natural process of ageing. Really? It does not feel very natural when you are going through it, I have to say. It also stated that there was no specific medicinal treatment. Treatment is aimed at “decreasing the signs and symptoms”, which is a very vague, non-specific definition.

I wonder why, even today, there is such a lack of knowledge and communication about such an important topic. There is lots of communication about puberty and pregnancy—they are well documented and well discussed, so people know what will happen before they experience them. It feels like menopause is the last taboo.

Having been a physiotherapist in my previous life, I thought that I knew all there was to know about the menopause, but nobody prepared me for the mental health aspects. My husband can testify to several meltdowns on my part, which left him completely taken aback, as was I. Obviously, once we realised what it was, we could put solutions in motion. But it is important that we know what is happening before it actually happens. Support is needed, whether at home or at work—I certainly benefited from the support of colleagues in the workplace—for all who go through the menopause, including before they go through it.

I feel privileged to have worked in the NHS in Wales on the menopause policy, which was issued in December 2018. The working group was all women of a certain age plus one very embarrassed man, but they produced important policy and guidance, offering specific and practical solutions for dealing with the menopause. They include simple things such as opening a window, relocating a desk or sorting out uniforms—simple things that just need to be put in practice. I urge the Minister to look at those sorts of practical solutions, because that is what we need to publicise.

In conclusion, I again thank my hon. Friend the Member for Swansea East for highlighting this important topic, and I urge the Minister to do all she can to make sure that people experiencing the menopause are supported, both here in this place and in the wider world outside Parliament, because this really is a time for action and not words.

Covid Contracts: Judicial Review

Ruth Jones Excerpts

Wednesday 24th February 2021 Commons Chamber

[Edward Argar]

My hon. Friend highlights the work of his fantastic hospital at Northwick Park and the fact, which I alluded to in response to the Chair of the Public Accounts Committee, that while we did not run out of PPE nationally, there were some real challenges at a number of sites. They did an amazing job to ensure that they had the PPE they needed. I believe the minimum time it can take to run a tender is around a month, and I certainly would not have wished to see us not utilising regulation 32 and waiting a month to order and secure the PPE that his hospital and those working in it needed.

[Ruth Jones (Newport West) (Lab) [V]]

The people of Newport West have looked at the media reports, the court judgments and the answers given in this House on this matter with horror. There appears to be no respect for honest, law-abiding citizens who play by the rules, and that is unacceptable, so when will Ministers finally show their respect for the will of the people and the ruling of the court and stop this reckless behaviour?

[Edward Argar]

I have made it clear that I and Ministers always respect the courts and the judgments delivered in them. I also have great respect for, and recognise the importance of, transparency. I would say to the hon. Lady, however, that I also respect the need to rapidly deliver the PPE that was needed last year at the height of the pandemic, which is what our constituents would expect us to do. As we cast our minds back, I think that is what they would have wanted us to focus on at that time. On her final point, yes I am quite happy to restate the Government’s commitment to the importance of transparency.

Covid-19 Update

Ruth Jones Excerpts

Tuesday 2nd February 2021 Commons Chamber

[Matt Hancock]

I agree entirely with my hon. Friend. The Royal College of Psychiatrists has been clear in describing the negative impact of school closures and also the negative impact of the virus getting out of control. The challenge we have is to try to mitigate both those problems, and it is the vaccine that is the best way through.

[Ruth Jones (Newport West) (Lab)]

I start by thanking our amazing NHS staff, and especially those working in the Aneurin Bevan health board here in south-east Wales, for their amazing work throughout the pandemic. Will the Secretary of State update the House on any conversations he may have had with the pharmaceutical companies about the need to modify the vaccine in the light of the new variants?

[Matt Hancock]

We are working with pharmaceutical companies and the scientists to understand whether and where such modifications are needed and how they can be brought to use on the frontline as quickly as is safely possible. That is obviously an important consideration given the new variants that we have seen. We have confidence that, should modifications to vaccines be necessary in large scale, they will be available more quickly than the original vaccines and, just as the first time round, when we got in there early and bought at risk, we are having conversations right now with the pharmaceutical companies to ensure that we are right at the front.

Covid-19 Update and Hospitality Curfew

Ruth Jones Excerpts

Thursday 1st October 2020 Commons Chamber

[Matt Hancock]

Yes, I know the Belstead Arms in Chantry well from campaigning pitstops, and it is true that Suffolk has the finest pubs in the country. My hon. Friend is making his case for Ipswich very strongly. Of course we keep these things under review, and will lift these measures as soon as we can.

[Ruth Jones (Newport West) (Lab) [V]]

I have spoken to many business owners and residents across Newport West in the past few days, and there is increasing concern that the UK Government’s left hand does not know what the right hand is doing. The border between Wales and England is extremely porous and any differences in local lockdown rules and restrictions are confusing for those living along it. So can the Secretary of State outline exactly how, and how often, he is meeting Members of the devolved Administrations to ensure that all parts of the UK are involved and engaged as we chart our way through this crisis?

[Matt Hancock]

Constantly, is the answer. I was brought up on the Welsh border, in Cheshire. I know exactly how porous the border is. Of course, public health is devolved and I would be surprised if the hon. Lady was arguing against the devolution of health powers. In fact, I have received a text from my Welsh opposite number during this session, so we have a constant conversation and dialogue to try to minimise exactly the sorts of issues that she talks about.