Cystic Fibrosis: Living Costs

I beg to move,

That this House has considered the impact of cystic fibrosis on living costs.

It is a real pleasure to be here in Westminster Hall—a bit breathless, but we are here. This is a massive subject, and I am very pleased that many colleagues have been able to attend in support. Looking around the room, I see many Members who have personal stories to tell; they will do so, and their stories will reinforce the questions that we all wish to ask the Minister. I am very pleased to see the Minister in her place, as well as the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne). He and I seem to be in many debates together; indeed, we are a bit of a tag team. It is also a pleasure to serve under your chairship, Ms Harris.

I am the DUP spokesperson for health, so I am pleased to be able to highlight the struggles of those with cystic fibrosis and other lung conditions who have been affected by the spiralling cost of living. As the Minister knows, I will make a number of asks of her in my speech. Most Members will be aware that cystic fibrosis is a progressive, life-limiting genetic condition that primarily affects the lungs and the digestive system. The condition is due to inheriting a faulty gene from both parents that causes the lungs and the digestive system to become clogged with mucus, making it hard to breathe and to digest food—that is the graphic way of explaining what it means. It is common for those with CF to also have CF-related diabetes; I did not know that until I read the research, but I was aware that other effects include osteoporosis and being malnourished. Some 80% of people with CF are pancreatic insufficient, and therefore need a higher calorie intake to maintain a healthy weight.

Roughly 11,000 people in the UK have CF: 9,000 here on the mainland in England, 1,000 in Scotland, 500 in Wales and 500 in Northern Ireland. In 2021, the median age of people with CF who died was 38. Wow—this disease really puts life into perspective. People with CF are particularly susceptible to lung infections, and therefore cannot meet each other face to face due to the risk of cross-infection. Again, the life of someone with CF is really restricted, and is much more difficult.

That brings us to the crux of the issue: living with CF demands an incredibly high burden of treatment, taking at least two to five hours and up to 70 pills each day. People with CF have higher food bills because they need a higher calorie intake to maintain a healthy weight, and higher energy bills because they need to keep their homes warm to stave off lung infections and they may need to power an additional fridge to store sterile medications or essential medical devices such as ventilators. Life as a person with CF is so different from everybody else’s life.

People with CF living in England must pay for their NHS prescriptions, unless they are exempt. Those with CF living in England and, at least until 2024, in Northern Ireland also have to pay hospital car parking charges. The Cystic Fibrosis Trust, in conjunction with Bristol University, commissioned a report entitled “The Financial Costs of Cystic Fibrosis”. I urge the Minister to take time to process that report; if she has already done so, we thank her for that. It will give her a good perspective on my speech, and perhaps on other Members’ speeches as well.

I congratulate the hon. Gentleman on securing another debate in Westminster Hall—he is very successful at doing so, and I thank him very much. According to research, an adult with cystic fibrosis will, on average, incur an additional £209 per month in living costs, while a parent carer of a child with the condition will incur an additional £291. Very few people on an average income have that kind of money to spare. Does the hon. Gentleman agree that dropping prescription charges for people with cystic fibrosis, as has been done in Scotland, would be one way of easing the burden on families?

I thank the hon. Lady for her intervention, and I agree with her. In Northern Ireland, there are no prescription charges—there is no cost—which I believe makes a difference. That is one of my asks of the Minister; there are a lot of asks, most of which are financial, but they are very important.

To follow on from the hon. Lady’s intervention, the report also revealed that the additional cost of living due to cystic fibrosis is over £6,500 per annum. The financial burden is made up of both extra spending to keep well and the loss of income. The key findings indicate:

“Families with CF are more likely to be struggling with their finances than the public—24% of adults with CF and 35% of parents of children with CF described meeting their bills each month as a ‘constant struggle’”—

life is really hard for people with CF—

“compared to 17% of UK households overall.”

The findings continue:

“Food and rising energy bills were the biggest financial concern for people with CF and their families—both are essential to the health and quality of life of people with CF.

For the average family the combined impact of extra spending”

includes “heating, expensive dietary needs” and “attending medical appointments”—the local hospital is not always where they go to meet a consultant or specialist—and “home medical equipment”. Life for a CF patient in their home is almost like being in a hospital.

There is also the loss of income: treatment takes two to five hours every day, which means that they cannot keep down a full-time job; indeed, it would be difficult to keep down a part-time job. The extra spending and loss of income means

“they are thousands of pounds worse off than comparable families.”

I thank the hon. Gentleman for giving way again; he is being very generous. Research conducted by the University of Bristol found that a surprising number of cystic fibrosis patients had applications for personal independence payment or disability living allowance rejected, and others did not apply because they did not know what support might be available. Does he have any thoughts about how the DWP could improve awareness of the condition and ensure people are getting the right support?

It is almost like the hon. Lady read my next point. That is one of the focuses of my request. It is my next sentence, would you believe?

We must remove unnecessary PIP reassessments for people with long-term conditions such as CF. There has to be an understanding of what CF is and how it affects people. There has to be an understanding that their lives are not like anybody else’s lives. I said earlier that the median lifespan for people with CF in the last year was 38 years. It is sad to say this, but it is a life-limiting condition.

There is a requirement for claimants to report any change in health to the Department for Work and Pensions—wow! It would be great if every person with cystic fibrosis could say, “I tell you what, I’m better today. I won’t need those 70 pills and the medication for the next wee while.” That does not happen. It would be a miracle. I believe in miracles—you know I do, Ms Harris—but they do not happen every day. The fact is that people sometimes have a sickness or a disability—this is one of them—that means they need help. I have always been a great believer that society is marked by how it helps those who need help, and that is what we need to do.

These people have a progressive lifelong condition and their health is unlikely to improve, but there is the threat of constant reassessment—my goodness, reassessment again. We know the condition is life-changing and life-limiting, and that they probably need a transplant. The hon. Member for Bristol East (Kerry McCarthy) is always here in these debates. I welcome her to her place—not that it is my job to welcome people to Westminster Hall, but I like to see her because I know she makes very helpful contributions. The reassessments provoke anxiety and are costly and unnecessary. Streamlining the assessment system would mean that those with progressive, long-term conditions such as CF do not have to undertake reassessments. That would not only remove the anxiety but provide cost savings to the DWP. We do not need to do those reassessments because it is a life-limiting disease.

The hon. Gentleman is making an excellent point about the reassessment process. Does he agree that many people with cystic fibrosis are unfortunately unable to access PIP because it is treated as an illness, rather than a disability? The assessment process assesses what people may theoretically be able to do, rather than what they can do in practice on a daily basis.

The hon. Gentleman has summed it up in that one sentence. I said when he made his maiden speech last week that his contributions will add much to this House. That is one of them, and I thank him for it. I wholeheartedly support him.

I again ask the Minister—she knows these requests, because I have made her Department aware of them—to remove VAT on energy bills. That is important for people with CF because, at a time when energy bills are already astronomical, the median energy bill for an adult with CF is £26 higher every month than for typical households. For parents of children with CF, the figure rises to £36, because they do more and keep more heat in the house for their children. Adults can sometimes bear with it a wee bit, but there is still a cost factor.

The hon. Gentleman is making an excellent speech. Does he agree that it is really important that people with lung conditions have the right environment at home and the right heating? The additional costs, especially given the rising energy costs, mean that we must take care of those people who need extra heat. That applies especially to people with CF.

The hon. Lady is absolutely right. I thank her for her contributions on this subject. She brings much knowledge to these debates. I am pleased to be a member of the all-party parliamentary group for respiratory health with her. We work with others to ensure that we can pursue matters, and today we are pursuing this matter for our constituents.

It is good to be in a Westminster Hall debate led by the hon. Gentleman; he is often a fixture here. I thank him for his kind words about my presence in previous debates.

On the energy bill issue, is the hon. Gentleman as concerned as I am about the reports of forced prepayment meters, including for people with extreme vulnerabilities and disabilities? Often those forced prepayment meters lead to self-disconnection because they are more expensive and people cannot afford to keep them topped up. I welcome today’s announcement that there is to be a moratorium on forced prepayment, but we should not have that at all, particularly for people with conditions that require their homes to be heated.

I do not have that in my notes, so I thank the hon. Lady for her knowledgeable intervention. That issue is hard to comprehend. If we have a decent wage, energy is not a big problem. On the minimum wage, it becomes a problem. When someone is disabled, it becomes an even bigger problem. She is right and I thank her for that reminder. We are all making points that we look to the Minister to respond to. Those with prepayment meters are under especial pressure and we look to the Minister to respond to that.

Removing VAT from energy bills would benefit not only CF families but all of the poor, as they spend a larger percentage of their income on energy bills.

Hospitals should provide free parking. I call on NHS England hospitals to provide access to free hospital parking for people with chronic medical conditions. Most hospital car parking charges are already abolished in Wales and Scotland, and Northern Ireland is set to abolish them in 2024. For once, the mainland needs to catch up with the regions. However, there are worries about potential delays to that coming into effect, given that there is currently no sitting Northern Ireland Assembly.

The guidance from the Department of Health and Social Care for NHS trusts in England makes it mandatory for parking to be free for those with blue badges, those attending as an out-patient three times a month for at least three months, and parents of sick children staying overnight, but it is rare that those with CF meet those criteria. The hon. Member for Stretford and Urmston (Andrew Western) referred to the assessment process, and that has to be addressed.

I am on to ask No. 5. Some 80% of people with CF are pancreatic insufficient, meaning they require a higher calorie diet. During hospital appointments and in-patient stays, it is vital that they have access to affordable food. However, NHS England’s national standards for healthcare food and drink do not refer to a need to ensure that affordable food is available in hospital cafés and canteens. That must change because there are people who cannot afford the right sort of food, but who need it.

The hon. Gentleman is making a passionate speech, but I want to pull him up on one point. The City Hospital in Nottingham has its own cystic fibrosis unit. The in-patients get a personal chef who cooks them whatever they want 24 hours a day. They have access to snacks, cakes and all the junk food that CF patients need, so what the hon. Gentleman says is not correct in my neck of the woods, where they have their own chef and can eat whatever they want, whenever they want.

I am really pleased to hear about that initiative in the hon. Gentleman’s hospital. That is a model for the rest—well done! We look forward to that scheme being taken on board by the Government.

The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) made a point about ending prescription charges for people with cystic fibrosis in England. I am on my last page, Ms Harris—I am conscious that I committed to a timescale, and I will try to keep to that. I am thankful for the exemption in place in Northern Ireland, but I cannot in all conscience leave it out of any debate on this issue for my fellow British citizens. As everyone knows, I am a great supporter of the United Kingdom of Great Britain and Northern Ireland. I am pleased that my friend, the hon. Member for Linlithgow and East Falkirk (Martyn Day), who will speak shortly for the Scots Nats party, is part of this great United Kingdom as well.

The list of medical conditions that are exempt from prescription charges was written by the Government in 1968, so I think it is time to look at that again. The reality is that, at that time, children with CF were not expected to live to be adults, so CF was not included in the list. However, there are now more adults than children living with CF and it continues to be one of the few chronic, life-shortening conditions where people pay for their prescriptions. One of my asks of the Minister is for that to change.

I thank the hon. Gentleman for giving way; he is being very generous with his time. Is he aware that there is a loophole in the system? Although people with CF cannot get free prescriptions, if they have diabetes caused by CF, they can. It is crazy and unacceptable that they have to rely on getting another disease before they can get a free prescription.

I thank the hon. Gentleman for his intervention, which reveals another anomaly. The list of questions for the Minister is getting longer, but I know she will be able to respond.

Ending prescription charges for the estimated 2,500 people with CF who are not currently eligible for free prescriptions could cost the Exchequer as little as £270,250 per annum. That is not a big cost. The Cystic Fibrosis Trust believes that ensuring that people with CF receive free prescriptions will mean they can live better, healthier and longer lives, ultimately reducing the burden on the NHS. It is vital that there is an urgent review of the medical exemption list to ensure that people with CF across the UK have equitable access to free prescriptions.

I thank all Members for their contributions and interventions. I look forward to the contributions by the SNP spokesperson, the hon. Member for Linlithgow and East Falkirk, and the shadow Minister, the hon. Member for Denton and Reddish. I thank the Minister pre-emptively for her response, for which I have high hopes. I genuinely know that the Minister has a heart for effecting real change—and that, I believe, is what is needed today.

It is a pleasure to serve under your chairship, Ms Harris.

I have an interest in this subject because, as hon. Members will know, I am part of the CF community, in that my wife has cystic fibrosis. She was not diagnosed until she was 18 years old, so her journey was a little bit different from that of most CF patients, who are diagnosed at birth using a simple test. Obviously, at the age of 18, having just finished school and done her A-levels, she was getting ready to head off to university and start her new life, so it was a shock to be told by the doctor, “You’re not going to live beyond the age of 30.”

However, she did live longer than the age of 30. With medication and care from our health service, she has led a decent life. Six years ago, she had a double lung transplant at Royal Papworth Hospital and she is doing all right—she is getting about and going about her business. We are forever grateful to the NHS. So I know a little bit about cystic fibrosis. I know what it is like to live with somebody who has CF and about the extra challenges and costs involved.

There are costs—just little things—that you would not even think about if you did not know someone with CF. The hon. Member for Strangford (Jim Shannon) is quite right that heating your home is crucial. It is also the food: my wife has to eat about 4,000 calories a day. She is basically like a stick insect, my missus—she is ever so thin. She cannot put weight on; she has to eat 4,000 calories just to maintain that weight.

Pre-transplant, my wife had to stop in the house to keep warm. If we went out for food, as we did on many occasions and wished we had not, the cold air made her sick—it made her cough. People with CF cough and cough until eventually they are sick. That messes up their diabetes, and then they have to eat more food to keep the weight on. It is a 24-hour challenge.

When you wake up in the middle of the night, your partner can be coughing. It is not just coughing; there can be a cup full of blood at the side of the bed, because blood is coming out of their lungs. You think, “My goodness, this is horrible. They’re going to die.” But they are not, because that is normal for a CF patient; that is what they do. You have to spend the night pounding their backs and giving them percussion, to make sure the mucus comes up.