Cystic Fibrosis: Prescription Charge Exemption — [Mr Virendra Sharma in the Chair]

– in Westminster Hall at 11:28 am on 2nd February 2022.

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[Relevant document: e-petition 326574, Make prescriptions free for everyone with Cystic Fibrosis.]

[Mr Virendra Sharma in the Chair]

Photo of Virendra Sharma Virendra Sharma Labour, Ealing, Southall 2:30 pm, 2nd February 2022

Before we begin, I remind Members to observe social distancing and wear masks.

Photo of Paul Maynard Paul Maynard Conservative, Blackpool North and Cleveleys

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 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.”

Photo of Ruth Jones Ruth Jones Shadow Minister (Environment, Food and Rural Affairs)

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.

Photo of Paul Maynard Paul Maynard Conservative, Blackpool North and Cleveleys

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 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.

Photo of Kerry McCarthy Kerry McCarthy Labour, Bristol East 2:43 pm, 2nd February 2022

It is always a great pleasure to see you in the Chair, Mr Sharma, and I congratulate 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, 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.

Photo of Ruth Jones Ruth Jones Shadow Minister (Environment, Food and Rural Affairs)

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?

Photo of Kerry McCarthy Kerry McCarthy Labour, Bristol East

That is certainly true. I know that some people would say that this would mean that Government money would be used to subsidise the 11% of people who pay for their prescriptions at the moment. However, the figures that we have talked about and the unfairness of the current situation seem totally wrong.

Although I hope that cystic fibrosis becomes a condition people can live with, that drugs can manage the condition and that people do not suffer from too much, I would still not want to be in the situation of having it. It is still a condition where people have to have daily physiotherapy, take drugs such as Creon before eating any food, and make regular trips to the hospital. They have to be very careful to avoid infection and had to shield during covid. When people are paying that sort of price, giving them an exemption from prescription charges is not too much to ask. I hope that the Minister will finally commit to reopening the 1968 list, and make sure that cystic fibrosis patients do not have to pay this amount anymore.

Photo of Lee Anderson Lee Anderson Conservative, Ashfield 2:52 pm, 2nd February 2022

It is a pleasure to serve under your chairmanship, Mr Sharma. I thank my hon. Friend Paul Maynard for securing this debate today and for the very passionate speech he gave.

There are 2,500 people in the UK who suffer from cystic fibrosis; my wife, Sinead, is one of them. My wife was really poorly through childhood and up until the age of 18. She never got diagnosed with a condition; it was just considered a bad cough and a few digestive problems. In fact, a local GP thought she was a bit of a nuisance as she kept going back. At the age of 18—imagine this—she was just about to finish her A-levels, go to university and start her journey through life, when she was finally diagnosed with CF. She was told by a GP and people at the hospital that she probably would not live until she was 30. That was a good outcome, back then.

Undeterred, my wife carried on, went to university, did her studies, took her medication, did her physio—she did all the right things—in the hope of becoming a schoolteacher. She qualified with a degree at university and then went on to become a teacher. This was way before I met her. She has told me that paying the prescription charges was a struggle for her, because she had her student loans to pay off and she wanted to buy a house to live independently; she had dreams of living independently because she was fighting against time. She only had a few years to live; she did not think she would be here by the age of 30, so she had to plan her life out. She struggled—she really struggled.

Then, in a sort of blessing in disguise, my wife’s illness took a turn for the worse: she got CF-related type 1 diabetes, which meant that she could get free prescriptions. The irony is incredible: she has a life-limiting condition such as cystic fibrosis, which—let us be honest—is an early death sentence, yet the only way to get free prescriptions is to get another condition that is not as life threatening. I know diabetes is serious—my wife said that, actually, she would sooner have CF than diabetes, because it is a nightmare taking her insulin. However, our brilliant NHS has sorted that: she wears a patch with a sensor that tells her when she needs insulin. That is really good. Nevertheless, it was a real battle.

Living with someone with CF is a struggle. I met my wife 12 years ago. She is the best thing that has ever happened to me, if I am honest. I saw her at night, when she was getting really bad. When she was 32 or 33, she was told she had only a couple of years to live, and she was put on the list for a double lung transplant. We went down to the Royal Papworth Hospital, had the assessment and did all that stuff. I used to be awake with her at night—giving her physio, patting her back—while she was coughing up cups and cups of blood and throwing up.

Sometimes, we would go out for a meal and, as soon as we went out into the cold air, she would throw everything up. Because of the coughing, there is a big struggle for a CF patient to keep their food down. Most people do not know that—I did not even know what CF was before I met my wife. There is a constant struggle to keep their weight on. The heavier they are, the healthier they are and the better their lung capacity. My wife had to eat 4,000 or 5,000 calories a day. That is a lot of food. She had to eat lots of junk food—pizzas, chocolate, chips; every bit of junk food—which totally contradicted her diabetes. It was a battle between two illnesses to keep her fit and healthy.

My wife was on the transplant list for about two years. We had six calls; five were false alarms. We would get the call and get blue-lighted down to Papworth Hospital in Cambridgeshire. She would get ready for theatre, they would tell us about the donor and, then, about half an hour before surgery, they would come to us and say, “I’m sorry—it’s not a match. You’ve got to go home.” We would have to drive two and a half hours back up to Ashfield—that is a long journey of about 100 miles. There would be deathly silence in the car. We would not talk to one another; we were both upset, thinking, “Well, that’s it. You’ve got just a few months to live.” That happened five times.

On the sixth time, in December 2019, we got to Papworth and they said, “It’s a goer. We’re going ahead.” We got there at about 1 o’clock in the afternoon and she had the surgery that night. The lady whose organs she was receiving was still on a life support machine; she was still alive, but was, sadly, brain dead. When they turn the machine off, they disperse the organs all around the country to wherever they are going. It is a wonderful thing that our NHS does.

When the doctors told my wife that she was going to have the transplant, she broke down in tears and said, “I don’t want it.” We had to have a conversation, which was pretty blunt: “If you don’t have it, you won’t be here in a couple of months.” It did not take long to make her mind up. She is a braver person than me, and she had the surgery. She went into theatre at about 7 o’clock. Halfway through, the surgeon came out and said that they were really struggling; they had got one lung out and one lung in, but they could not get the other lung out. It was not looking good. Her mother and I were there, at Papworth.

Anyway, a couple of hours later, the surgeon came out again and said that they had got the lung out. They were fighting against time, because they only have a short amount of time. After about 14 hours, he came back down and said they had done it and were just sewing her up back up. She was fine after that, although it was a struggle. I think that people do not realise that a patient can get over the physical part—although it is a lot of pain, a lot of painkillers and a lot of medication—but the mental part is very tough. For my wife, knowing that she had somebody else’s organs inside her body, with the fear of rejection, was tough.

I hope that gives hon. Members a little insight into what it is like for a CF patient. It is hard to sympathise and empathise without having been there. That is the journey my wife went through. She always says that she cannot understand why she has this horrible condition but she cannot get a free prescription. Our spare bedroom is like a chemist’s. There are thousands of tablets. She takes over 50 tablets a day and now her transplant tablets as well, and the only reason she gets a free prescription is that she has diabetes. It seems absolutely crazy. I understand the argument that people get PIP or disability living allowance, and I understand that they should use that for extra living costs—I get that—but lots of CF patients out there do not get DLA or PIP. It is a real struggle, and we should take that into consideration.

I read this morning that the Cystic Fibrosis Trust says the cost to the Government would be about £270,000 a year if they waived prescription charges. To put that into context, it is similar to a premiership footballer’s weekly wage or the salary of a newsreader on the BBC—my favourite channel. That amount of money is what we are talking about.

We are limiting chances for people. Obviously, my wife went on to be a primary school teacher and make a fantastic contribution to society. For 10 years, she taught lots of children and made a real difference. She was able to do so not because she was financially secure, but because she did not have the extra debt of prescriptions. Fortunately, or unfortunately, she got diabetes, which made it less expensive for her but resulted in more hassle and more tablets.

However, we have new drugs such as Trikafta, which I thank the Government for introducing about 18 months ago and which, by the way, is a game-changer. A number of parents have contacted me to say, “This is brilliant. My child is going to live a near-normal life.” My wife did not get that chance. She had to have a transplant, so she is on limited time.

It seems now that we have done all this brilliant work and got these brilliant drugs that extend lives and let people live a more normal life—but living longer costs more money. I do not think that is fair, but I get both sides of the argument. It is not “one size fits all”. There are plenty of people with CF who have a few quid in the bank. We are comfortable in my household. My wife and I are all right—I get a decent salary—but there are people with CF who are a lot worse off than me, and I know from experience and talking to the CF community through social media that there are people out there for whom every penny counts and who skip their medication. If people with CF skip their medication, there is a good chance that could put them in hospital. Even worse, it could end up killing them, because skipping medication for a condition like this literally kills people.

I ask the Minister to have a serious think about waiving prescription charges. Like I say, it is not “one size fits all”. I do not personally think that everybody should get free prescriptions, because some people get extra benefits—the DLA, PIP or whatever—that are supposed to help them, but the Minister should take into account that it is a very costly job being a CF patient. They need extra food, and there is all the travel to the hospital and the doctors to have their blood done. It is an absolute nightmare. My wife has many trips to the hospital every single month, and there is the added cost of going down to Papworth once every three months for check-ups and stuff like that. The CF community is very small in this country, and not many people know much about it. I am fortunate that I know a little bit about it through my wife, so I can tell that story. I hope the Government listen, and I hope there can be some compromise.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 3:03 pm, 2nd February 2022

It is a pleasure to speak on this issue. I thank 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 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 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.

Photo of John Hayes John Hayes Conservative, South Holland and The Deepings 3:10 pm, 2nd February 2022

I had not intended to contribute to this debate, Mr Sharma. As you know, because I gave you written notice, I could not be here at the outset and I cannot stay for the end, and it is not conventional to contribute on that basis, so I am grateful for your indulgence in allowing me to do so. I decided to contribute only when I heard the superb speech of my hon. Friend Lee Anderson, which was both moving and informed by the most intimate personal experience. Sometimes in this place, that inspires us to contribute, and I will briefly say why.

Long before Bob Russell was invented, in the dim and distant past, and before my 19 consecutive years as a Front Bencher, I was a bright-eyed, bushy-tailed Back Bencher, fortunate in the late 1990s to come up in the ballot for private Members' Bills. It was the only private Member’s Bill I have ever had—we cannot have one as Front Benchers, and I have not had one since. I chose to introduce a Bill to do exactly what my hon. Friend Paul Maynard has requested today, which is to remove prescription charges for those suffering from cystic fibrosis. I did so, believing all that has been said in this debate by all who have contributed.

I went to see the then Labour Minister, a nice man in the House of LordsLord Hunt—who was a good, diligent Minister. He gave me a fair hearing as I put the case with all the vehemence but reason that has typified this debate. Unfortunately, I was not able to persuade him, and subsequent Health Ministers have remained unpersuaded. I put the case because I have a personal story too, but it is a story with a less happy ending than that told by my hon. Friend the Member for Ashfield. I had a close friend who suffered from cystic fibrosis, and her experience catalysed my commitment to try to do something about it.

My friend was a very young woman who worked for me when she contracted cystic fibrosis. She had two lung transplants at the Freeman Hospital, in the days when they were an extreme rarity—very few single lung transplants had been done in the early 1990s. She survived them both and did well, got married and had a baby. Later, she was due to be the godmother to my youngest son, who is now 17 years of age. When I asked her to do it, she said, “You know I won’t be around for his 21st birthday.” Sadly, she was not even around for his christening because, as my hon. Friend the Member for Ashfield said, people who have transplants are always likely to die of something other than the condition that originally provoked the transplant. My friend died of cancer in Derbyshire Royal Infirmary when my son was a tiny baby and the day after I had been to see her with the infant in my arms.

Jane, my dear friend, made me know how important this cause is, and made me understand why my hon. Friend Paul Maynard has done us a great service in bringing it before this Chamber and to the Minister’s attention. Having been a Minister many times—I am sorry to put my hon. Friend the Minister in this position, because he is a personal friend as well as being an hon. Friend—I know that if he were to say today in this debate, “We are going to do this,” it would happen, because in the great scheme of things it is not a huge decision for the Government. But, my goodness, it is an immense one for people such as the wife of my hon. Friend the Member for Ashfield and my late, dear friend. For that reason, I say to the Minister that he should stand up now and say that the Government will consider this or, better still, that they will do it. He would be remembered forever as the Minister who responded to a Westminster Hall debate on the basis of the strength of a cross-party argument that had such weight and substance—such vehemence expressed on behalf of those who suffer—that it persuaded him to act immediately. I hope that he might at least commit to considering this again, because it is a just and worthy cause. So many people would celebrate a small step for the Government, but a huge step for them.

Photo of Virendra Sharma Virendra Sharma Labour, Ealing, Southall

It was the right decision to let you come in. Thank you very much for your contribution.

Photo of Feryal Clark Feryal Clark Shadow Minister (Health and Social Care) 3:15 pm, 2nd February 2022

It is a pleasure to serve under your chairmanship this afternoon, Mr Sharma. I pay tribute to Paul Maynard for securing this important debate and for his continued campaigning on this issue. I also thank my hon. Friend Kerry McCarthy, Lee Anderson, Jim Shannon and Sir John Hayes. As has been said, hearing the personal stories of Members brings to the fore the reality faced by CF patients, which is really important, and I thank Members for sharing those personal stories.

As we have heard this afternoon, cystic fibrosis affects over 10,000 people in the UK, with one in 25 people being carriers of the CF gene. CF is a degenerative condition with symptoms that often start in early childhood, get progressively worse and affect people’s quality of life. Although there is no cure, treatments are available to help manage the condition and reduce its effects. Sadly, life expectancy for those living with CF is still shorter than that of the general population. People living with CF are also more susceptible to other conditions, including diabetes, osteoporosis and liver issues.

Despite the debilitating nature of CF, people living with the condition face a complex and discriminatory system when it comes to accessing prescriptions. The system of prescription charges is complex for most people, but for those living with long-term health conditions, it can present multiple challenges.

As all Members have said, there are several exemptions from prescription charges, based on demographics, income and pre-existing conditions. When it comes to pre-existing conditions, the list of conditions that are exempt from prescription charges was first created in 1968, as we have heard. In the 54 years since, we have seen immeasurable changes in our understanding of long-term conditions and the outcomes of people living with them, yet just one addition has been made to that list in those 54 years—just one. That leaves those living with CF in the position of needing to have another long-term condition to access free prescriptions. This two-tier system leaves thousands of people with the same conditions facing different circumstances.

We know the difficulties faced by those living with CF who have to pay for their prescriptions. The costs of prescriptions can put people off taking the medication they need, as we have heard. With the costs continuing to rise, those problems are only going to get worse. That not only leaves people suffering more than necessary but, as set out very eloquently by my hon. Friend the Member for Bristol East, will cost the NHS more money in the long term and further increase pressure on primary care.

At a time when the cost of living is continuing to rise, the Government ought to consider what more they can do to support people with these essential costs. The fact that one in 10 people living with CF were given emergency grants by the Cystic Fibrosis Trust to help them fund their medication shows how serious this problem is. No one should be forced to choose between paying for their prescription and risking their lives. Sadly, we know the financial pressures that those with long-term conditions often face. As the hon. Member for Strangford mentioned, surveys have shown that 29% of people living with CF have not taken their prescriptions due to financial pressures. Too many people are forced to make dangerous choices that they should not have to.

The inequality in prescriptions for those living with CF is clearly a cause for concern, and something that the Minister needs to look at. In December, he stated in response to a written question that the Government’s

“policy on entitlement to help with prescription charges in England is based on the principle that those who can afford to contribute should do so, while those who are likely to have difficulty…paying should be protected.”

What weight has he given to the financial difficulties of those living with long-term conditions such as CF when establishing his principles?

Furthermore, as I and other hon. Members have pointed out, the medical exemption list for prescription charges has been updated just once since 1968. Given the Government’s levelling-up agenda, one would assume that this would be a perfect opportunity to bring health policy properly into the 21st century. Given the powerful arguments that we have heard this afternoon, I hope the Minister’s position has progressed from the response he gave to the written question just a few weeks ago. For him to say that the Government have “no plans” to look again at this, despite the overwhelming changes in our health service in the last 54 years, is frankly slightly baffling. What reassurances can he give those living with CF that the Government understand their condition as it is now, not as it was in 1968?

The Minister furthermore suggested that capping charges at £108 for those living with long-term conditions through a prepayment certificate provided support. This highlights a failure to grasp just how serious the financial pressures faced by those living with long-term conditions such as CF are. Those living with CF face an outdated and unfair system that is wholly removed from the world as it is today. If the Government truly believe in levelling up, it is time for the Minister to look at this issue again.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care) 3:23 pm, 2nd February 2022

It is a pleasure as always to serve under your chairmanship, Mr Sharma. I congratulate my hon. Friend 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 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 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 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.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

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.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

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 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, 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.

Photo of Kerry McCarthy Kerry McCarthy Labour, Bristol East

I have just realised that it is groundhog day—I missed an ideal opportunity to weave that fact into my speech, as I think all of us would have done. Is there anything the Minister could say that does not makes us feel like we have been here many times before? He has said that he will reflect on these points, but is there not something a little bit more concrete that he can give us a commitment on, so that we feel that we are perhaps making some progress?

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

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.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

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.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

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.

Photo of Paul Maynard Paul Maynard Conservative, Blackpool North and Cleveleys 3:40 pm, 2nd February 2022

I thank all those who have participated, particularly my hon. Friend Lee Anderson. We are all grateful to him for not just speaking on a personal basis, but illuminating a debate far better than I could from my more dry, academic analysis. I thank him for his personal contribution, and I thank all hon. Members for a constructive debate. I recognise the point that the Minister made; making a commitment on the hoof at the Dispatch Box can be career-limiting. I know that myself, as I reflect on what I once said on rail and aviation, which I suspect led to my defenestration. Saving High Speed 2 can be terminal for a career, perhaps. None the less, I hope he will take the issue back to Lord Kamall, and that he might encourage him to meet me and other interested Members to hear what the Gentleman whose brief it is thinks of the matter.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

I am happy to reassure my hon. Friend that I will certainly convey his request for a meeting to my noble Friend.

Photo of Paul Maynard Paul Maynard Conservative, Blackpool North and Cleveleys

We have something concrete on which to conclude the debate.

Question put and agreed to.

Resolved,

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

Sitting suspended.