PARLIAMENTARY DEBATE
Cystic Fibrosis: Living Costs - 2 February 2023 (Commons/Westminster Hall)

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.”

The findings continue:

“Three-in-five (59%) of adults with CF had also incurred some form of income loss as a result of their condition in the last two years—for example, reducing working hours, taking unpaid leave to attend appointments or leaving work altogether”,

as many have to.

The Cystic Fibrosis Trust has seen a significant increase in the support needed, with 72%—a big figure—of helpline inquiries since October 2022 relating to financial support. Between October and December 2022, it provided cost of living fund grants to hundreds of households and increased its grants for essential household appliances and white goods. The figures are real—they are quite detrimental and very hard to comprehend.

According to the Marmot review of health inequalities,

“Those living in the poorest neighbourhoods are twice as likely to develop a lung condition, and seven times as likely to die from one than those in the richest areas.”

We have seen the pressures on those with CF, but those pressures are even greater if they live in households where money is tight, where they cannot keep a wage and where they are probably more dependent on benefits. I will talk about that in my requests to the Minister. I know that benefit payments are not the Minister’s responsibility, but they are one of the issues that come off the back of this debate.

Because poorer communities are disproportionately impacted by the cost of living crisis, many of those living with a lung condition are more likely to be struggling from the outset. Asthma and Lung UK found that almost two thirds—63%—of those surveyed with a lung condition are

“buying and eating less food.”

That is when they need food more, need the right food and need it in the right quantity. Eating less food can lower immunity and increase the risk of

“viruses that are the top trigger of asthma attacks”.

It is clear that those who suffer from cystic fibrosis, or from other lung conditions, are in grave need of help. That is my ask of the Minister today. Some of the issues will take cross-Department co-operation, but I believe the Minister is best placed to take them forward. The collective asks that I and others in this debate have are so important.

I should have said at the beginning—I apologise for not doing so—that I thank the Backbench Business Committee for agreeing to the debate. The Committee is very good when we propose debates to it, and it granted this one without any thought whatsoever. We also hoped to have the debate at this time, because it ties in nicely. There are people in the Gallery who have helped me, and probably others in this room, to prepare our contributions for today.

Ask number two, which I have raised before but will raise again, is that benefits must continue to rise in line with inflation. Some 83% of parents of children with CF are receiving one or more type of benefit, and 68% of adults with CF are claiming at least one form of benefit, according to the new report. The Office for Budget Responsibility forecasts that consumer prices index inflation for 2023 will be 7.4%. Those are the figures. If the Government—I always say these things respectfully and they are not meant critically, which is not my form, but I ask them because they need to be said—do not continue to increase benefits in line with inflation, not only those with CF but all the poorest will suffer a detrimental blow.

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.

I feel very frustrated—I am sure others do too—when people with life-limiting diseases have to go through reassessments for employment and support allowance, PIP or DLA. It is absolutely unbelievable that that should happen.

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.

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.

But since I have been here we have made great leaps with this new drug—Trikafta—which we agreed to fund a couple of years back. That is a game changer, and although there are challenges for CF patients, and they have the extra costs involved, we are also seeing great innovations in medicine, which are making sure that they live longer and have a better quality of life. CF patients nowadays can have—if not a more normal life—a good quality of life compared to what they did 20 or 30 years ago. As I said, Trikafta is a game changer. When it was introduced a few years back, I got lots of emails from families with little children saying, “We’re over the moon.”

In Ashfield, we have a little CF warrior called Amelia Rose Ratcliffe. She was a lockdown baby and was born on 12 October 2020. I have been to see her. She is a gorgeous little girl and dead clever. She lives with her mum and dad and her brother, Alfie. To be told, as a parent, that your kid has CF—I really don’t know you cope with that. At one time, it was a death sentence, but now, with innovations in medicine, it is a lot better.

The family is a middle-income family, and they are really feeling the pinch. Like I say, keeping the house warm is so important. Then there are the nappies: CF patients, whether children or adults, go to the toilet more—it is as simple as that. So if you have a CF baby, the nappies are another extra cost. There is other equipment you have to buy; you can buy these vibration vests, which shake the chest and clear it of mucus. People have to buy them privately; they are about four or five grand —they are a lot of money, but if you have the money, I am sure you would do anything for your children.

There are the constant trips to the hospital—it is a lot of trips. The hon. Member for Strangford mentioned parking fees. We are lucky at our local CF unit, because the patients can park for free, so that is not a problem, but I wish other trusts would take a leaf out of their book. Blowing machines and percussion machines are other stuff you can buy—the NHS is pretty good at supplying them. Parents are always looking for lots of stuff to make their child’s life more comfortable and to prolong it, and to give their child a better quality of life.

That is what it is about: having that quality of life. Since my wife had a transplant, her quality of life has been a lot better, and we thank our donor’s family every day. That is another thing we do not really think about in these discussions: eventually, without the right medication, some patients will need a transplant, and that is a matter of life and death—my wife would not be here now without a transplant.

I spoke to Amelia’s mum, Holly, last night and asked her if she wanted me to say anything in this debate, because she cannot be here and obviously cannot speak here. She wrote a few words down for me, and I want to read them out:

“Being a cf parent is one of the hardest things I have ever had to go through. Not just physically, but mentally too. Dealing with the condition in itself is hard enough, having no cure available. Endless physio, daily routines, no days off, hospital stays, hospital trips and constant need for medications just to keep her… well… and … it’s sometimes not enough to keep her well. The constant worry for the future and what the future holds for Amelia, really plays heavy on our minds. But we try and stay as positive as possible, as we have no other choice but to take every day as it comes. It’s draining physically, from running around finding the medication, as there are a lot of shortages for certain cf medicines. So going to a number of pharmacies to find medication is a strain. There is no break, and it is a full-time condition 24/7. The price increase on everything with the cost of living adds extra strain and other things in life have taken a back seat.”

She finishes by saying that she wishes the Government could help the whole CF community as much as possible, and she thanks us for discussing these matters today. That is quite good coming from Holly.

I spoke briefly about prescription charges. My wife was diagnosed with CF at 18. She obviously had to pay for her prescriptions, but then, when she got to 23 or 24, she was—not fortunately—diagnosed with diabetes. Because she had diabetes, she then got free prescriptions. The two diseases are so contradictory: for one disease, CF, you have to eat a lot of high-calorie junk food such as burgers and chips, which is a dream for most of us, but that totally contradicts diabetes, so regulating your insulin is a constant struggle. My wife always says to me that she would sooner have CF than diabetes, even though CF can be a killer. That is the struggle people have to manage, and it is a constant job.

We have talked about free prescriptions. The hon. Member for Strangford said that the cost would be £200,000; that is about the average wage of a premiership footballer, so I do not think it is too much money. But we have to be careful, because not every CF family is poor; there are a lot of CF people who go to work and have good jobs and careers, and any support should be targeted at the most vulnerable families, because there are some very vulnerable CF families out there who do not have much money. For a CF family like mine, I am prepared to pay a little bit more and not have a benefit to make sure that my neighbour, who does not have that money or that support, gets a little bit more.

I know that the Minister is listening, and that she has a big heart. There are lots of little Amelias all over the country, and there will be lots of CF families watching this debate—I know that Amelia’s family is watching. There are lots of people in the CF community and from the Cystic Fibrosis Trust who will be encouraging people to keep tagging me on Facebook and making a nuisance of themselves, but I am glad they do, because we need to debate this important issue in this place; if we cannot change things here, I am in the wrong place. So thank you, Ms Harris; this is a great debate.

It is a pleasure to serve under your chairship, Ms Harris, and I congratulate the hon. Member for Strangford (Jim Shannon) on securing what is an incredibly important debate, in which I will speak on behalf of my constituent Penny Mitchell and her family. Penny’s daughter, Eva, is 15, and cystic fibrosis affects all her organs. As we know, CF is a degenerative, life-shortening disease. I will not go through the symptoms, as colleagues are already aware of them—the hon. Member for Strangford set many of them out—but I will focus on some of the challenges that Penny has taken the time to tell me about, and I will share just some of her correspondence with me.

For Penny and Eva, the problem with the current system of support is that CF is seen as an illness, not a disability. CF adults are not eligible for free prescriptions, because that list was last reviewed in 1968, and at that point—as the hon. Member for Strangford highlighted—those with CF were not expected to live to adulthood. The need for a review is clear: when we consider that Eva was born with CF and is currently taking around seven different medications a day, we can see what an injustice that is.

However, Penny’s biggest concern is that when Eva turns 16 in June, she will no longer be eligible for disability living allowance for Eva, who will have to claim PIP. As I highlighted in my intervention earlier, that can be a challenging process for those with CF, because PIP is assessed on difficulties doing daily tasks and on mobility and does not necessarily reflect the struggles of people with illnesses such as Eva’s. In many ways, she is quite unlikely to be eligible for PIP, even though the things for which Penny was given DLA still need doing and funding. Penny is scared that, without financial support as an adult, Eva will simply decide she is unable to do those things—things like attending hospital, buying the extra food she needs or keeping herself warm and clean. The risks to her health are obvious.

Eva is currently in school year 11. Because she is constantly fatigued and trying to battle chest infections, and also suffers from anxieties related to living with a medical condition that will shorten her life, she has only been able to physically attend school for 50% of this school year and the previous year. That has an impact on her ability to get good qualifications and secure a good, well-paid job in future.

My hon. Friend makes a really important point. We have talked about some of the associated conditions that can come with CF, such as diabetes, but the mental health implications for some sufferers are acute. I hope the Minister will take account of that in her response.

Penny is incredibly concerned—given how difficult it is for Eva to attend school and the support she needs from Penny to do that—about how difficult it will be for Eva to secure work. That is something they worry about a considerable amount; with the current cost of living, it is a huge concern, because without receiving funding to support her living costs, Eva will be left in a vulnerable position. She will be less likely to earn a decent living, as she may be able to work only part time and will not necessarily have the same qualifications as somebody who has been in school full time.

Eva’s illness is not properly recognised by the current criteria, which seem to assume that people need financial help only because they are unable to do certain physical daily tasks and lack mobility. In theory, Eva can do those things, but she does not usually feel well enough to do them and so relies heavily on help, but that does not necessarily come across in the current system. Why does current financial support not consider the impact of an illness on a person’s ability to get an education and gain decent employment, and recognise that providing support would enable them to maximise their potential and earn the best living that they can in the circumstances?

If young people such as Eva were routinely financially supported with PIP, it would take some pressure away from them so that they could focus on doing what they can manage to do, and it would help them to meet their costs of living. Penny faces the prospect that, in order for Eva to attend college, she will have to reduce her hours at work to be able to take her there. That would obviously have a significant impact on the family finances, but getting a bus early in the morning and back again after college may add to Eva’s fatigue, so Penny taking her there is the only way for the situation to be manageable and for Eva to avoid missing college too often.

The hon. Member is making a great speech. People with disabilities such as cystic fibrosis find it harder to maintain employment and, as he says, worry about keeping up with bills. It is estimated that only half of employers have occupational sick pay schemes. Does the hon. Member share my concern about the impact of the UK’s very limited statutory sick pay rate on vulnerable people who need to take time off work?

I share the hon. Lady’s concern. She is absolutely right that this impacts significantly on people’s ability to function in the workplace. It also impacts on the mental health issues raised by my hon. Friend the Member for Bristol East (Kerry McCarthy), so it is an important issue, and the hon. Lady is right to raise it.

Let me return to Penny and Eva’s plight and the concerns that Penny has set out to me. Because Penny will no longer get DLA and Eva is unlikely to get PIP to help with costs, there appears to be little support for Eva, moving forward. I have had correspondence with Penny beyond what I have shared with colleagues here. Eva needs multiple prescriptions, which she will have to pay for as an adult. She has frequent hospital visits. These are familiar concerns, which we have heard about. Travelling to hospital incurs parking costs, but also petrol costs. Eva needs extra food to prevent her from being malnourished, as she cannot digest food properly; extra water to be clean, as she sweats excessive salt out; and, of course, extra heating—an issue that colleagues have mentioned—to keep her warm.

The cost of living is tough for us all, but it is having an especially acute impact on those with CF. Given that it is so hard for them to work full time and that the benefits system does not necessarily look after them in adulthood, this is a real crisis, so I hope action can be taken. I am pleased to associate myself with colleagues who have so far spoken in highlighting the many ways in which the Government could take action. A review of the now 55-year-old list of conditions for which there are free prescriptions is one such way. The hon. Member for Strangford highlighted an uprating of benefits. There could also be some practical support around VAT on energy bills. Other support could be offered to help people with the rising cost of food, and the hon. Member for Ashfield (Lee Anderson) mentioned the potential clash in managing diet when balancing the impacts of cystic fibrosis and diabetes, which can in itself add to food costs, although that may be offset by the free prescriptions.

There is a considerable amount going on here. As I said, I associate myself with the comments of my colleagues, and I hope the Minister will indicate in her response what action can be taken.

I am grateful to the hon. Member for Strangford (Jim Shannon) for securing this debate on the impact of cystic fibrosis and for covering the issue quite comprehensively. Cystic fibrosis is a chronic condition that affects the lungs and has many other serious side effects. It is one of the UK’s most common life-threatening inherited diseases; about 10,800 people across the UK currently have it.

There can be little doubt as to the profound impact of cystic fibrosis on one’s life. We must recognise that the current cost of living crisis disproportionately affects those with disabilities, including those with cystic fibrosis. This has been well illustrated in today’s debate by a range of Members who gave examples of direct lived experience from their families and constituents, in particular the hon. Members for Ashfield (Lee Anderson) and for Stretford and Urmston (Andrew Western), who both did so excellently.

A report from the University of Bristol put the additional cost of living with cystic fibrosis at £6,500 a year. The dietary requirements alone—good nutrition is vital to support the need for 150% to 200% more energy —represent an alarming cost for many. As the hon. Member for Strangford mentioned, people with cystic fibrosis may have to take as many as 70 enzyme pills to help to digest food: an absolutely staggering number. As well as that, most people with the condition require 20% to 50% more calories a day than people without it, while some may need considerably more.

Some people with cystic fibrosis use a wheelchair to get around and oxygen to help them breathe, with sufferers often having to undergo a rigorous daily regime of treatments to stay healthy. All this comes with costs attached, and often relies on an individual or their family having sufficient income to cover it.

Cystic Fibrosis UK’s report, “The cost of cystic fibrosis”, shows that 87% of people with cystic fibrosis are worried about the cost of living, and that this is a growing concern for many in the community over the coming months. The report also found that one in three people with cystic fibrosis had missed a hospital appointment due to the cost, one in three had run out of food before they had enough money to buy more, and one in three had to prioritise one basic essential over another.

The impact of shielding and lockdowns as a result of the covid-19 pandemic and the rising cost of living have added even further financial burden for many people with cystic fibrosis. Extra life costs for sufferers and their families—spending more on essential goods and services such as heating, insurance, specialist diets, equipment and therapies—mean less money in their pockets, with the result that they are more likely to have a lower standard of living, even when they earn the same as an adult without the condition.

In England, cystic fibrosis is currently not one of the medical conditions that exempts people from paying prescription charges. In contrast, as we have heard already, the Scottish Government have scrapped all prescription charges. It is particularly concerning that 25% of people with cystic fibrosis use their benefits to pay for prescriptions that are essential to live with the condition. Some 44% of people with cystic fibrosis said that they rely on statutory sick pay while sick. I continue to oppose the rules around statutory sick pay, which fall far short of meeting a dignified standard of living and are not flexible enough to meet real needs, as the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) highlighted earlier. Workers need to earn at least £120 per week to be eligible for statutory sick pay, meaning the lowest earners and those working part time are more likely to miss out on income support. As we have heard, many with cystic fibrosis fall into those categories. The UK has one of the lowest sick pay rates in the OECD. The current rate of £99.35 is wholly inadequate, and one in five workers is not eligible for it. Groups most likely to miss out are women and those in insecure work. I have repeatedly called on the UK Government to increase statutory sick pay in line with the real living wage, make it available to everyone by removing the qualified worker and earnings requirements, and extend it to 52 weeks instead of 28.

Heating and energy costs are another area where sufferers typically face higher monthly bills than others. As has been mentioned, removing VAT from energy bills would help. I also support the idea of reimbursing additional costs for lifesaving medical equipment powered at home. Perhaps it is time to investigate the possibility of effectively prescribing energy for some conditions.

The SNP will continue to urge the UK Government to use all the reserved powers at their disposal to tackle the cost of living crisis on the scale required. That includes access to borrowing, providing benefits and support to households, and ensuring that those benefits rise in line with the cost of living. Tackling VAT on fuel, taxation on windfall profits and regulation of the energy market are all areas where the power is currently reserved to Westminster. Until the Scottish Parliament has full power over those areas, we require action from this place. I look forward to the Minister’s response.

It is always a pleasure to respond on behalf of the shadow Health and Social Care team, and to see you in the Chair, Ms Harris, guiding our proceedings. I sincerely thank my hon. Friend for securing this important debate—I know the convention is to call him the hon. Member for Strangford (Jim Shannon), but he is my friend. He always manages to find a way of getting pressing issues such as this one, which are all too often overlooked by this place, discussed on the Floor of the House. I am grateful for that, and for the comprehensive and detailed way in which he set out the case before us. This has been a good debate.

I thank the hon. Members who made short contributions, such as the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) and my hon. Friends the Members for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy). Coming to the substantial contributions, I sincerely thank the hon. Member for Ashfield (Lee Anderson) for sharing his personal experiences. It is often difficult to do that in this place, and he added a great amount of knowledge, detail and worth to our considerations. I am sure that the Minister will feel the same. On behalf of the whole House, I send our best wishes for the future to him and his wife, and to Amelia and her family. Sharing our constituents’ personal experiences is also important, because we are sent here to advocate for them.

I also thank my hon. Friend the Member for Stretford and Urmston (Andrew Western). He has certainly hit the ground running as a newly elected MP. He is already making eloquent contributions following the by-election, including today on behalf of his constituents, Penny and Eva. In a similar vein to what I said about the hon. Member for Ashfield, it is important that real-life experiences are articulated in these debates.

The cost of living crisis is impacting people right across the country, as we are all too aware with our constituency caseloads. We all hear regularly that many constituents are having to make the difficult choice between putting food on the table or heating their home. It is all too commonplace for constituents to open their energy bills with a feeling of dread in the pit of their stomachs. Many have no idea how they will get through the next week, let alone month.

For those with cystic fibrosis, however, the problems are even more challenging. As many Members highlighted, they are much more likely to be struggling with their finances than the general UK population. They are at a significant social and economic disadvantage. As we have heard, CF is a genetic condition that affects almost 11,000 people in the United Kingdom. People with CF experience, as we heard graphically from the hon. Member for Ashfield, a build-up of sticky mucus in the lungs, digestive system and other organs. It can affect multiple parts of the body, with symptoms including, but not limited to, reduced lung function, increased susceptibility to infection, weakened bones, liver disease, diabetes and more.

Households affected by CF face a median loss of about £564 a month. That financial hit would be extremely difficult in favourable economic circumstances, but in the current financial context it is nothing short of devastating for too many people who live with CF. As the Cystic Fibrosis Trust points out, many people with CF incur a “double-hit” to their finances by having to spend more to keep themselves healthy and being forced to make different decisions about education or employment opportunities.

Jess, an adult living with CF, said:

“Living with CF has always caused my life to be unpredictable, which has cost me financially as well as in many other aspects of my life”.

Jess sums up what many people living with CF know all too well: in almost every aspect of day-to-day living, it is more expensive to be a person with CF.

Energy bills are a prime example. Many people with CF have to use nebulisers, feeding pumps, electric sterilisers and other energy-intensive appliances for their health. That means that the median energy cost for an adult with CF is £26 more than a typical bill. For a child with CF, that climbs to £36 more. I would be interested, then, if the Minister could set out what assessment the Government have made of the current support available to those living with CF.

Furthermore, like Members from across the House—this is not a party political point—I am really concerned that, although energy bills are predicted to rise to an average of £3,000 from April, the Government have still not yet set out their plans to support households beyond that date. Will they explain what is likely to happen, particularly for people with additional costs that they cannot do anything about because of the need for medical assistance? Extra support would benefit people across the country and households affected by CF, which are particularly vulnerable to energy price rises.

I also want to raise the issue of access to benefits with the Minister. I know this is not her direct responsibility, but I am sure she is in dialogue with colleagues in the Department for Work and Pensions. As has been said, disability living allowance and PIP were the most commonly claimed benefits from people living with CF. However, as the Cystic Fibrosis Trust makes clear, a surprising number of those with CF have either been turned down or have not applied for support because they expect to be refused.

CF is a changeable condition. Many people living with it have good days as well as bad days, and that can lead those applying for benefits being unfairly declined or facing stigma in accessing support. What assessment has the Minister made of access to welfare support for people with CF, and are the Government taking any steps to improve access for those with the condition?

Labour has committed to overhauling routes into work for sick or long-term unemployed people and doing away with some of the gruelling reassessments. We have pledged to guarantee extra support for flexible working for those with chronic conditions, and I would like to see that pledge matched by the Government today. It is something that the shadow Front Bench would be willing to support the Minister in pursuing, as she has responsibility for this matter. I appreciate that the Minister works in the Department of Health and Social Care, but she must realise that many of the levers to improve the lives of people with cystic fibrosis sit in other Departments, including the DWP. Will she commit to working cross-departmentally on the issues we have discussed to improve the lives of those living with serious conditions such as CF?

CF is a difficult enough condition to manage without having to face systemic, financial, employment and social barriers, too. The Government need to take the experiences of those living with cystic fibrosis seriously and try to fix the issues we have been discussing. The tools are there for the Government to act. That means ensuring that support is in place to guarantee that those living with acute conditions like cystic fibrosis cannot just make it through the cost of living crisis, but in future can lead lives that are meaningful, joyful and supported by us in this place through the welfare system and employment support. The Government will have our support in making that happen.

It is a pleasure to serve under your chairmanship, Ms Harris. I thank the hon. Member for Strangford (Jim Shannon) for not just securing the debate, but the tone in which he conducted it and his well-established support for the cystic fibrosis community. His continued presence at cystic fibrosis debates over the years has impressed on the Government the vital role that public services play in supporting people with cystic fibrosis, as well as driving home the stark realities of living with the condition. I also thank him for his kind works to me as a Minister in the Department of Health and Social Care.

I pay tribute to all hon. Members who have taken the time to speak in the debate. The hon. Member spoke powerfully about what it is like for people living with cystic fibrosis and the challenges and costs, including the cost of medication, food and energy and the loss of income, drawing on the good work in the Bristol University report, “The Financial Costs of Cystic Fibrosis”, which I have indeed read. I thank my hon. Friend the Member for Ashfield (Lee Anderson), who spoke powerfully from his personal experience of his wife living with cystic fibrosis. He talked about the extra heating and food costs and the need for 4,000 calories a day for somebody with the condition, which practically is expensive to do. He spoke about how it is a 24-hour challenge and, indeed, what the nights are like living with someone with cystic fibrosis. I welcome the optimism he brought to this Chamber as he spoke about some of the improvements to quality of life thanks to medical innovations.

My hon. Friend spoke powerfully about the CF warrior in his constituency—little Amelia Rose Ratcliffe—and what her life and, particularly at the moment, the life of her parents looking after her is like. Again, there are a lot of extra costs and all the extra trips for appointments and to the hospital. It was good to hear that there is free parking at his local hospital. He spoke powerfully about the constant worry for parents and how there are lots of little Amelias and their families all around the country. As a parent myself, I can imagine how worrying it would be for the parents of a child with a condition such as cystic fibrosis.

I think this is the first time that I have spoken in a debate with the hon. Member for Stretford and Urmston (Andrew Western), so I welcome him to Parliament. He spoke about Eva, who is older than Amelia and in school year 11, and about how she has missed a lot of school and the challenges and worries that brings—for instance, in respect of what her life will be like after school and what employment opportunities she will have. In particular, he brought into the conversation the issue of the anxiety that adults and especially young people with cystic fibrosis experience, as well as the broader mental health impact. Those are really important issues for us to discuss.

It was also good to hear from the hon. Members for Rutherglen and Hamilton West (Margaret Ferrier), for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy), and, of course, from my fellow Front Benchers, the hon. Members for Linlithgow and East Falkirk (Martyn Day) and for Denton and Reddish (Andrew Gwynne). It has been good to have this number of people contributing to a debate on this subject in Parliament.

I wish to recognise the fantastic work undertaken by the Cystic Fibrosis Trust, which advocates on the behalf of people living with cystic fibrosis and their families and continues—very effectively indeed—to bring their needs to the attention of parliamentarians. The work of the trust to help people with the increased financial burdens associated with cystic fibrosis, be it through direct financial assistance or by providing advice and information to those in need, is substantial and should be commended. The trust’s continued support for people with the condition, along with the support provided by other voluntary sector organisations, is invaluable.

During this debate, we have talked and heard about the pressures that face people with cystic fibrosis because of the increased cost of living; indeed, those pressures are set out clearly in the report from the University of Bristol. Although the increased cost of living affects us all, it has been rightly acknowledged by the Members present that the cost of living situation for people with cystic fibrosis is far more acute than the pressures that face most people.

The majority of people with cystic fibrosis will claim at least one form of benefit, with many claiming two or more benefits, and I know how important that money is to those who rely on it. As a country, we will spend around £66 billion this financial year on benefits to support disabled people and people with health conditions. In fact, specific spending on the main disability benefits—personal independence payment, disability living allowance and attendance allowance—is more than £7 billion higher in real terms than it was in 2010. Significant amounts of money are going to those who claim benefits, including disability benefits, but I have clearly heard the conversation today about how life can still be very hard for those with cystic fibrosis who claim benefits.

The Government are committed to helping those with cystic fibrosis who are able to work to do so. Our goal of reducing the disability employment gap remains, and we continue to support disabled people to start, stay and succeed in work. We do this through a range of mechanisms which, particularly for cystic fibrosis, take into consideration the impact of such a condition on someone’s ability to work. For instance, mechanisms include increasing work coach support in jobcentres for people with health conditions who receive universal credit or employment support allowance, and disability employment advisers in jobcentres who offer advice and expertise on how to help disabled people and people with health conditions into work.

For people who are in work, the Disability Confident scheme encourages employers to think differently about disability and health, and to take positive action to address the issues that employees face in the workplace. Also, the information and advice service provides tailored guidance on supporting and managing health and disability in the workplace. In addition, we support Access to Work grants towards the extra costs of working beyond standard reasonable adjustments, to ensure that people such as those with cystic fibrosis who can work have the support that they need to do so.

Several Members spoke about the cost of energy. To help with the rising cost of energy, our energy bills support scheme is delivering a £400 non-repayable Government discount in instalments over six months to help 29 million households with energy bills over the winter. The energy price guarantee, which saves a typical household around £900 this winter, will be extended to April 2024. Also, over the past year there has been extra support for people on means-tested benefits such as universal credit, to help them with the higher energy costs we have been talking about. Sums of £650 were paid out in two payments last summer and November to households in that situation, with an additional £150 for those on disability benefits.

The household support fund, which is £1.5 billion in total, has gone to local authorities to provide support to the most vulnerable people in their communities. Local authorities judge who most needs that help and how best to give it. Local authorities have provided support to help with energy costs, and sometimes specifically to help people whose health needs contribute to their finding it difficult to afford their extra energy costs. The fund was intentionally distributed in such a way as to give local authorities the flexibility to use it most effectively to help their communities and the people they know most need help.

Let me address some of the concerns expressed about the costs directly linked to cystic fibrosis, such as prescription costs and challenges in attending appointments. It is true to say—it has come up this afternoon—that not everyone with cystic fibrosis will qualify for free prescriptions, but there are prescription charge exemptions in place in England to help patients with the greatest need to afford prescriptions. For instance, people with cystic fibrosis who receive benefits may be exempt through the NHS low-income scheme.

Those who have to pay NHS prescription charges and need many prescription items can save money with a prescription prepayment certificate, which allows people to claim as many prescriptions as they need for a set cost. A three-month prescription prepayment certificate, which costs £30.25, or an annual one, which costs just over £108, will save people money if they need four or more items in three months or 12 or more items in 12 months. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 a week.

I absolutely hear the hon. Member’s argument, and similar points were made during the debate. As the Minister with oversight of major conditions, cystic fibrosis is not the only condition about which I have received letters, parliamentary questions and lobbying in general asking for exemptions to prescription charges. We cannot just look at cystic fibrosis in isolation; a similar argument could be made in relation to a number of other conditions. As I have set out, the way the system works is specifically designed to help people on low incomes with the cost of prescriptions and make it more affordable for people who have to get a lot of prescriptions during the course of a year.

I want to follow on from what the hon. Member for Bristol East (Kerry McCarthy) said. I think I referred in my contribution to the 1968 legislation. The perception at the time was that children who had CF were not going to survive, and that therefore there was no need to include CF, but today there are more adults who have CF than ever. The point that I am making is that things have changed. Will the Minister convey that information to the DWP in as strong a fashion as we have in this Chamber, and ask the DWP to look at that? I know it is not the Minister’s responsibility to look at that, but if that is agreeable to her, it would be helpful.

As ever, the hon. Member is extremely persuasive. I will be happy to take that up with ministerial colleagues who are responsible for prescription charges, but I do say that this is the case not just for cystic fibrosis. We should be aware that we would be similarly lobbied on behalf of other conditions, so we need to be aware of the breadth of the issue raised. However, I shall be happy to take up the matter with ministerial colleagues.

I want to pick up on the cost of attending medical appointments, which was also raised. To help people to get to appointments, the NHS healthcare travel costs scheme provides financial assistance to eligible patients who need assistance with their travel costs. That includes patients in receipt of a qualifying benefit and those on the NHS low-income scheme.

Another way to alleviate the cost pressures of medical appointments for people with cystic fibrosis—I stress that this is only where appropriate; I do not want to be misconstrued—is for appointments to be virtual. NHS England is supporting NHS providers to embed and spread the use video consultations innovatively, where that is the right thing for a patient, and in discussion with the patient in respect of their individual needs. For some patients, that is helpful in reducing the number of journeys they make to appointments—but I am clear, and I know very well, that some appointments should and have to be in person, particularly whenever anybody wants that.

I tried to illustrate this point earlier, but although I understand that, with the restructuring of hospitals, not every hospital can specifically respond to everything—hence the centralisation of medication and healthcare—when it comes to cystic fibrosis and getting an appointment with a consultant, physio or whoever it might be, one factor is the distance that a great many patients have to travel, especially those in rural areas. The Minister has said that those on benefits can qualify for travel costs, but for some people it is not the cost alone; it is the travel itself. I am sorry for going on a wee bit, Ms Harris, but as I said earlier, for most people with CF that means two to five hours every day of their lives, so the impact on them is greater. The Minister has talked about the physical and mental health aspects, but there are wider aspects, which include the long distances that people have to travel just to get the treatment they are after.

The hon. Gentleman makes an important point about having to travel further for appointments and treatment, which affects people in rural areas generally. Those costs will clearly affect those who have to travel regularly and frequently, such as patients with cystic fibrosis who need many appointments. I am very happy to take away the point he raises and to look at whether we should do something different or specific for those living further away from wherever they need to go for treatment.

I want to pick up on the point about hospital parking, which is clearly another cost that might be affecting people. The Government committed to introducing free hospital car parking for those in great need, including frequent out-patient attenders, as part of our election manifesto. NHS trusts and NHS foundation trusts are required to comply where applicable with NHS car parking guidance, which outlines that disabled patients and visitors should receive free parking for the duration of their attendance at, or visit to, hospital. It also makes it clear that parking will be provided free to all out-patients who attend hospital for an appointment at least three times in a month and for an overall period of at least three months. Importantly for parents of children with cystic fibrosis, parents of children who are admitted as an in-patient overnight should receive free parking between the hours of 7.30 pm and 8 am while visiting their child. I was glad to hear from my hon. Friend the Member for Ashfield that, as I have heard in other places, there is indeed free parking for the patients with cystic fibrosis he mentioned and their families.

I want to mention the innovative work—which also touches on the virtual appointments that I mentioned a moment ago—that Royal Brompton and Harefield NHS Foundation Trust is doing in partnership with NuvoAir, whereby patients use spirometer devices at home to measure lung function and access the results on their phones or tablets via Bluetooth. The results can be shared with a specialist cystic fibrosis clinical team at the Royal Brompton Hospital during virtual consultations, saving the patients time and money while ensuring effective monitoring by the clinical team. There is a balance here, because although the many appointments mean extra journeys, we are doing things to improve the lives of people with cystic fibrosis and to help with the practicalities of the necessary extra treatment and care.

This debate has powerfully brought to life the extra challenges facing people living with cystic fibrosis and their families. It has been helpful to air the issues relating to extra costs and anxiety and the practical difficulties of living with the condition. I pay tribute to all those involved in supporting people with cystic fibrosis and all those living with it. The drive and determination to improve things is inspirational, and I hope that I have reassured everybody about the Government’s commitment to supporting patients with cystic fibrosis and their families.

I thank all Members for their contributions. I thank the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for her interventions on costs, benefits, and employment issues; she is always very wise. I thank the hon. Member for Blaydon (Liz Twist) for bringing her knowledge about lungs and asthma, which are part of this subject matter, from the APPG for respiratory health. I thank the hon. Member for Bristol East (Kerry McCarthy) for her efforts over the years. She referred to mental health, because physical ailments sometimes spill over into mental health issues.

We are all indebted to the hon. Member for Ashfield (Lee Anderson) for his personal story, because he described what it is like to live with extreme CF. We thank him for that story and for what he does for his wife—I know she appreciates it greatly, particularly with her diabetes. We also appreciate the other personal story about Amelia; I never realised that people so young could be affected.

The hon. Member for Stretford and Urmston (Andrew Western) referred to his constituent Penny Mitchell and her daughter Eva, to DLA and PIPs, to the extra water and food that people may need, and to the problems that some experience in securing employment. My friend the hon. Member for Linlithgow and East Falkirk (Martyn Day) emphasised how CF sufferers can pay £6,500 a year and referred to how CF patients have to prioritise aspects of their lives, to acceptable levels of benefits, and to energy costs.

I genuinely always love the contributions of the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), because they are full of detail and evidence-based knowledge and propose many good ideas. He referred to people choosing between putting food on the table or heating their home, to how the condition affects multiple body parts, to its unpredictability—people do not know what the next day will be like—and to welfare support and the DWP.

I am pleased that the Minister showed her heart in how she responded to our requests. I welcome what the Government are trying to do with the steps they are taking. The Minister has heard our stories both individually and collectively on the behalf of our constituents. We want the benefits to be reviewed, and I am pleased that the Minister is prepared to take that to the DWP. Adults with CF today need the system to change. While every person with CF would love to be able to work, the reality is that they cannot.

I thank the Minister for her response and thank everybody else for their contributions. I hope that on the behalf of those in the Gallery today representing people with CF, we can do better collectively. That is what this is about, and I am sure that the Minister will be as energetic as we are in making that happen.

Question put and agreed to.

Resolved,

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