Cystic Fibrosis: Living Costs

Andrew Western Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon]

It is almost like the hon. Lady read my next point. That is one of the focuses of my request. It is my next sentence, would you believe?

We must remove unnecessary PIP reassessments for people with long-term conditions such as CF. There has to be an understanding of what CF is and how it affects people. There has to be an understanding that their lives are not like anybody else’s lives. I said earlier that the median lifespan for people with CF in the last year was 38 years. It is sad to say this, but it is a life-limiting condition.

There is a requirement for claimants to report any change in health to the Department for Work and Pensions—wow! It would be great if every person with cystic fibrosis could say, “I tell you what, I’m better today. I won’t need those 70 pills and the medication for the next wee while.” That does not happen. It would be a miracle. I believe in miracles—you know I do, Ms Harris—but they do not happen every day. The fact is that people sometimes have a sickness or a disability—this is one of them—that means they need help. I have always been a great believer that society is marked by how it helps those who need help, and that is what we need to do.

These people have a progressive lifelong condition and their health is unlikely to improve, but there is the threat of constant reassessment—my goodness, reassessment again. We know the condition is life-changing and life-limiting, and that they probably need a transplant. The hon. Member for Bristol East (Kerry McCarthy) is always here in these debates. I welcome her to her place—not that it is my job to welcome people to Westminster Hall, but I like to see her because I know she makes very helpful contributions. The reassessments provoke anxiety and are costly and unnecessary. Streamlining the assessment system would mean that those with progressive, long-term conditions such as CF do not have to undertake reassessments. That would not only remove the anxiety but provide cost savings to the DWP. We do not need to do those reassessments because it is a life-limiting disease.

I feel very frustrated—I am sure others do too—when people with life-limiting diseases have to go through reassessments for employment and support allowance, PIP or DLA. It is absolutely unbelievable that that should happen.

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

The hon. Gentleman is making an excellent point about the reassessment process. Does he agree that many people with cystic fibrosis are unfortunately unable to access PIP because it is treated as an illness, rather than a disability? The assessment process assesses what people may theoretically be able to do, rather than what they can do in practice on a daily basis.

[Jim Shannon]

The hon. Gentleman has summed it up in that one sentence. I said when he made his maiden speech last week that his contributions will add much to this House. That is one of them, and I thank him for it. I wholeheartedly support him.

I again ask the Minister—she knows these requests, because I have made her Department aware of them—to remove VAT on energy bills. That is important for people with CF because, at a time when energy bills are already astronomical, the median energy bill for an adult with CF is £26 higher every month than for typical households. For parents of children with CF, the figure rises to £36, because they do more and keep more heat in the house for their children. Adults can sometimes bear with it a wee bit, but there is still a cost factor.

--- Later in debate ---

[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.

[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.