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.