Cystic Fibrosis: Prescription Charge Exemption

Lee Anderson Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Lee Anderson (Ashfield) (Con)]

It is a pleasure to serve under your chairmanship, Mr Sharma. I thank my hon. Friend the Member for Blackpool North and Cleveleys (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.