Cystic Fibrosis: Living Costs

Jim Shannon Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

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.

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

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?

[Jim Shannon]

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.

[Margaret Ferrier]

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?

[Jim Shannon]

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.

[Andrew Western (Stretford and Urmston) (Lab)]

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.

[Jim Shannon]

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.

[Liz Twist (Blaydon) (Lab)]

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.

[Jim Shannon]

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.

[Kerry McCarthy (Bristol East) (Lab)]

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.

[Jim Shannon]

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.

[Lee Anderson (Ashfield) (Con)]

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.

[Jim Shannon]

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.

[Lee Anderson]

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.

--- Later in debate ---

[Jim Shannon]

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.

--- Later in debate ---

[Helen Whately]

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.

[Jim Shannon]

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.

[Helen Whately]

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.

[Jim Shannon]

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.

[Helen Whately]

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.

[Jim Shannon]

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.