Cystic Fibrosis: Living Costs

Debate between Margaret Ferrier and Andrew Western

Thursday 2nd February 2023 Westminster Hall

[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.