Cystic Fibrosis: Prescription Charge Exemption

Virendra Sharma Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Mr Virendra Sharma (in the Chair)]

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

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

I beg to move,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As Anna told me:

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

--- Later in debate ---

[Sir John Hayes (South Holland and The Deepings) (Con)]

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 the Member for Ashfield (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 the Member for Blackpool North and Cleveleys (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 Lords—Lord 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 the Member for Blackpool North and Cleveleys (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.

[Mr Virendra Sharma (in the Chair)]

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