Cystic Fibrosis: Living Costs

Margaret Ferrier 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.

--- Later in debate ---

[Andrew Western]

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.

[Margaret Ferrier]

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?

[Andrew Western]

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.