Cystic Fibrosis: Prescription Charge Exemption

Jim Shannon Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak on this issue. I thank the hon. Member for Blackpool North and Cleveleys (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 the hon. Member for Ashfield (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 the hon. Member for Bristol East (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.

--- Later in debate ---

[The Minister for Health (Edward Argar)]

It is a pleasure as always to serve under your chairmanship, Mr Sharma. I congratulate my hon. Friend the Member for Blackpool North and Cleveleys (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 the Member for Ashfield (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 the hon. Member for Bristol East (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 the hon. Member for Strangford (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.

[Jim Shannon]

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.

[Edward Argar]

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 the Member for South Holland and The Deepings (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, the hon. Member for Enfield North (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.

[Edward Argar]

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.

[Jim Shannon]

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.

[Edward Argar]

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.