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.

Oral Answers to Questions

Lee Anderson Excerpts

Tuesday 18th January 2022 Commons Chamber

[Edward Argar]

We will endeavour to respond swiftly, but if the hon. Gentleman would like to meet me about capital funding for those sorts of projects, I am always happy to meet him.

[Lee Anderson (Ashfield) (Con)]

Now then: the Health Secretary will be aware that King’s Mill Hospital in Ashfield was built under a disastrous private finance initiative deal under the last Labour Government. It now costs us about £1 million a week to service the debt—money that could be spent on social care in Ashfield. Will he meet me to discuss how we can rid my trust of this crippling debt of £1 million a week and spend it on social care?

Covid-19 Update

Lee Anderson Excerpts

Monday 7th June 2021 Commons Chamber

[Matt Hancock]

But why? Why on earth would you say, “I’m going to rule out doing something in two weeks’ time,” when we know that the extra data that we will get over the next week will help to make a more refined and more careful decision? I do not understand this argument that has been put by the SNP and the Green party that we should just make a decision now, when we will know more in a week’s time, so that is what we are going to do.

[Lee Anderson (Ashfield) (Con)]

Now then, I see that our NHS has published its very own woke alphabet, which includes terms such as “white fragility” for the letter W. Not only is this a load of nonsense, but it is very divisive. Does my right hon. Friend agree that the vast majority of our brilliant NHS staff are more interested in keeping the nation healthy than in learning the ABC of wokery?

[Matt Hancock]

Yes, I agree with my hon. Friend. He puts it well. This so-called glossary appeared on the NHS website. I have raised it with the NHS and it has been taken down.

Covid-19

Lee Anderson Excerpts

Tuesday 25th May 2021 Commons Chamber

[Nadhim Zahawi]

I absolutely join my hon. Friend in that, because I see it up and down the country all the time. I spoke earlier about the Dunkirk spirit, with people coming up and saying, “I want to be counted. I want to be part of this.” We demonstrated it to the world a little bit in the 2012 Olympics. This is a whole other scale of operation. Nevertheless, we have delivered on it and will continue to deliver on it, and I stand on the shoulders of the real heroes and heroines of the NHS family, our armed forces and local government.

[Lee Anderson (Ashfield) (Con)]

The vaccine works—it prevents serious illness and helps to prevent transmission—but I read in the papers this morning that even if someone has had two jabs, if they come into contact with someone who is positive after 21 June, they will still have to isolate for 10 days. Could my hon. Friend confirm whether or not that is correct?

[Nadhim Zahawi]

I answered a question on this issue earlier. Obviously if someone contracts covid, they have to isolate and quarantine, but in terms of their contacts, we are looking at regular testing to see whether there is an alternative. I am afraid that my hon. Friend will have to wait a little longer before step four, and we will say more on this on 14 June.

Future of Health and Care

Lee Anderson Excerpts

Thursday 11th February 2021 Commons Chamber

[Matt Hancock]

The reforms that we have set out were themselves initiated and generated from the NHS, which may be one reason why I am so pleased to have seen such a strong, positive reaction from the NHS to these proposals. They are about what happens over the decade to come. Of course we always need to be improving the NHS, and each reform is a matter of the context of its times. These reforms are about more innovation, more integration and more accountability for the NHS, all with the goal of supporting those who work on the frontline to deliver better care.

[Lee Anderson (Ashfield) (Con) [V]]

Covid has changed the way we live and work. We have all had to adapt, and our NHS has been forced to find better ways of working. Can my right hon. Friend reassure me that our NHS will learn from our covid days, adopt some of the new measures in place and improve its performance over the coming years, while delivering on our commitment to recruit 50,000 more nurses and build 40 new hospitals?

[Matt Hancock]

Absolutely. We are on track to hire 50,000 more nurses over this Parliament and build 40 new hospitals over the decade. Those were core commitments in the manifesto that my hon. Friend and I both stood on with great enthusiasm, and I look forward to delivering on them. The White Paper will help towards that, but that is on track and under way already. He is quite right about learning from what has gone well in the pandemic, during which the NHS has had to work so incredibly hard, and the White Paper will help to do that.

Some of the culture and some of the ways of working have been more flexible, more dynamic and more joined-up within the NHS over the past year, embracing more modern technology than ever before. It is critical that we keep pushing that culture forward and supporting people in driving that culture forward and do not fall back to old ways of working. The White Paper will help us to do that, but it is only one part, because it is everybody working as a team and working together that is at the core of where things have gone well over the pandemic.

Vaccine Roll-out

Lee Anderson Excerpts

Thursday 21st January 2021 Commons Chamber

[Matt Hancock [V]]

At heart, I agree with the instincts of the hon. Gentleman. The challenge is that we need to do this at scale. As supply is the rate-limiting factor, it is very important that any vaccination site can get enough people through to be able to use the vaccine in time—we do not want to leave stocks in the fridge. Pharmacists are experienced at vaccinating and pharmacy technicians can vaccinate, and they are a very important part of the programme. With pharmacies, we have started with the bigger sites that are able to achieve a higher throughput. It is because supply is the rate-limiting factor that we need to make sure that all supply is used up quickly from the point at which it is distributed. That is why we have taken that approach. I am thrilled that so many pharmacies are now coming on stream; there is lots more to do.

[Lee Anderson (Ashfield) (Con) [V]]

I volunteered in one of the brilliant vaccination hubs in Ashfield and there is one thing that we are not short of: people turning up every single day to get the vaccine. We need more capacity, to win the war quicker and save more lives, so will my right hon. Friend please tell me what he is doing to ensure that the people of Ashfield and Eastwood get their vaccination as soon as possible?

[Matt Hancock]

I am delighted that my hon. Friend is volunteering in a vaccination centre; that is terrific. This is a big national effort, and he is playing his part. Some 49,000 vaccinations had been done in Nottinghamshire as of 17 January. Clearly we still have to do more, but we are making very significant progress. As I said, the rate-limiting factor is the amount of supply that we get into the country, rather than, for instance, the enthusiasm of GPs in the NHS or, indeed, the number of volunteers who have stepped forward such as my hon. Friend.

Mental Health Act Reform

Lee Anderson Excerpts

Wednesday 13th January 2021 Commons Chamber

[Matt Hancock]

That is one of the purposes of having advocates in this way. Exactly how we frame that in law will no doubt be a subject for nuance and debate to get it right, and I am very grateful for the hon. Gentleman’s support. It is very heartening to see the emphatic cross-party support for the White Paper today, and the commitment I will give to him is that we should continue to discuss, and we will continue to discuss in an open-minded way, exactly how we put the details into legislation to make sure that we get them right and continue with this consensus-based approach.

[Lee Anderson (Ashfield) (Con) [V]]

In December 2016, with just a few months to live, my wife received the gift of a double lung transplant courtesy of a donor, a young lady called Holly. My wife coped with the physical recovery very well, thanks to our brilliant NHS and a loving family. However, her mental recovery is ongoing. My wife fell into a depression, believing that her lungs would reject and she would die.

With our new opt-out organ donor scheme, thousands more will receive the gift of life. Will my right hon. Friend please advise me on what more can be done to ensure that the mental health of donor recipients is treated on an equal footing with their physical health?

[Matt Hancock]

It is very moving to hear the personal testimony of so many people, and I am grateful to my hon. Friend for his personal testimony today of how important this is. Like him, I am thrilled that we have been able to make organ donation an opt-out system, and we did that in the middle of the pandemic. He is right that it is not just about physical recovery; it is about physical and mental recovery. The point he makes so sensitively just shows how important and how broad this subject is, and I would be very happy to work with him on this specific subject to make sure that people get the best possible services.

Covid-19 Update

Lee Anderson Excerpts

Monday 14th December 2020 Commons Chamber

[Matt Hancock]

With the decision to move areas into tier 3 comes extra financial support, and as I have said several times, we recommend that people exercise personal caution and responsibility over the Christmas period.

[Lee Anderson (Ashfield) (Con) [V]]

The tiering system has worked incredibly well in Ashfield and Eastwood, as rates are down due to the hard work and suffering of my constituents. Could my right hon. Friend reassure me that our hard work, dedication and willingness to do the right thing will be taken into account when deciding what tier we will be in at the end of the week?

[Matt Hancock]

My hon. Friend knows from personal experience what this disease can be like. He has been a powerful voice for Ashfield, and I will take his representations into account when we make a decision on Wednesday.

Coronavirus Vaccine

Lee Anderson Excerpts

Wednesday 2nd December 2020 Commons Chamber

[Matt Hancock]

We have that mutual recognition agreement in place now. The hon. Lady is right to point to the global scientific work—work between UK scientists and scientists based in the UK, German scientists at BioNTech, the American scientists and the Belgians, who are producing and manufacturing this vaccine. The approach has been about people coming together right around the world, and the UK has put more into the global search for a vaccine in cash terms than any other country; despite our medium size as a nation, we have been the most generous, and I am really proud of that.

[Lee Anderson (Ashfield) (Con)]

It is great news about the vaccine, and, on behalf of the residents of Ashfield and Eastwood, let me say a big thanks to the Health Secretary, the scientists and the pharmaceutical companies.

The small businesses in Ashfield and Eastwood have taken a massive financial hit during lockdown, despite doing their very best to be covid-secure, while supermarkets have recorded record profits. I have received lots of complaints this week from customers and staff at local supermarkets who say that the stores are overcrowded and not covid-safe; this is happening all over the country and is unfair to the small businesses, which have been hit the hardest. While the UK is being vaccinated, in the run-up to Christmas traders in my constituency will do their very best to beat the virus. Will my right hon. Friend therefore please remind the supermarket executives that they have a duty to protect their staff, customers, our NHS and the whole of the UK in order to beat the virus and get our lives back?

[Matt Hancock]

Yes, I am very happy from this Dispatch Box to remind the supermarkets of their responsibilities to follow covid-secure guidelines and ensure that they are in place for their customers and staff. I pay tribute to my hon. Friend for standing up for the small businesses of Ashfield. It is tough in Ashfield at the moment—I get that. We have the restrictions in place only because they are absolutely necessary. I know that he understands that. He is a strong voice in this Chamber for all the small businesses and residents of Ashfield.

Covid-19 Update and Hospitality Curfew

Lee Anderson Excerpts

Thursday 1st October 2020 Commons Chamber

[Lee Anderson (Ashfield) (Con)]

Pubs, such as the New Cross in Ashfield, run by Jay and Mathew, are losing revenue due to the 10 pm curfew. They fully understand the rules that need to be in place to keep us safe, so can my right hon. Friend please explain to the staff and regulars at the New Cross how science has guided the decision to close pubs at 10 pm?

[Matt Hancock]

I want to say to all the staff and all the regulars at the New Cross that we would not have this in place unless we thought it was needed. The science is about how, late at night, people end up closer together and therefore spread the virus more, and this will not stay in place one minute longer than it needs to.