Cystic Fibrosis: Prescription Charge Exemption

Debate between Ruth Jones and Paul Maynard

Wednesday 2nd February 2022 Westminster Hall

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

I beg to move,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As Anna told me:

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

[Ruth Jones (Newport West) (Lab)]

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

[Paul Maynard]

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

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

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

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

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

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

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

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

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

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

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

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

Or listen to Donna:

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

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

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

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