Cystic Fibrosis: Living Costs

Debate between Andrew Western and Kerry McCarthy

Thursday 2nd February 2023 Westminster Hall

[Andrew Western (Stretford and Urmston) (Lab)]

It is a pleasure to serve under your chairship, Ms Harris, and I congratulate the hon. Member for Strangford (Jim Shannon) on securing what is an incredibly important debate, in which I will speak on behalf of my constituent Penny Mitchell and her family. Penny’s daughter, Eva, is 15, and cystic fibrosis affects all her organs. As we know, CF is a degenerative, life-shortening disease. I will not go through the symptoms, as colleagues are already aware of them—the hon. Member for Strangford set many of them out—but I will focus on some of the challenges that Penny has taken the time to tell me about, and I will share just some of her correspondence with me.

For Penny and Eva, the problem with the current system of support is that CF is seen as an illness, not a disability. CF adults are not eligible for free prescriptions, because that list was last reviewed in 1968, and at that point—as the hon. Member for Strangford highlighted—those with CF were not expected to live to adulthood. The need for a review is clear: when we consider that Eva was born with CF and is currently taking around seven different medications a day, we can see what an injustice that is.

However, Penny’s biggest concern is that when Eva turns 16 in June, she will no longer be eligible for disability living allowance for Eva, who will have to claim PIP. As I highlighted in my intervention earlier, that can be a challenging process for those with CF, because PIP is assessed on difficulties doing daily tasks and on mobility and does not necessarily reflect the struggles of people with illnesses such as Eva’s. In many ways, she is quite unlikely to be eligible for PIP, even though the things for which Penny was given DLA still need doing and funding. Penny is scared that, without financial support as an adult, Eva will simply decide she is unable to do those things—things like attending hospital, buying the extra food she needs or keeping herself warm and clean. The risks to her health are obvious.

Eva is currently in school year 11. Because she is constantly fatigued and trying to battle chest infections, and also suffers from anxieties related to living with a medical condition that will shorten her life, she has only been able to physically attend school for 50% of this school year and the previous year. That has an impact on her ability to get good qualifications and secure a good, well-paid job in future.

[Kerry McCarthy]

My hon. Friend mentioned anxiety. As many people will know, I have a niece with CF, who has just turned 18. She is very much at the healthy end of the spectrum, which is good, but there comes a point, particularly with access to social media, when young people start to learn that they have a life-limiting condition. They learn far more about it than they perhaps would have done in the days when they would have relied on their parents to tell them about it and at a time when their parents thought they could handle it. Supporting them from a mental health point of view while they are going through that is really important too.

[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.