Cystic Fibrosis: Living Costs

Martyn Day Excerpts

Thursday 2nd February 2023 Westminster Hall

[Martyn Day (Linlithgow and East Falkirk) (SNP)]

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.