UK Parliament / Open data

Cystic Fibrosis: Living Costs

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.

About this proceeding contribution

Reference

727 cc170-1WH 

Session

2022-23

Chamber / Committee

Westminster Hall
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