Cystic Fibrosis: Living Costs

Kerry McCarthy Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon]

The hon. Lady is absolutely right. I thank her for her contributions on this subject. She brings much knowledge to these debates. I am pleased to be a member of the all-party parliamentary group for respiratory health with her. We work with others to ensure that we can pursue matters, and today we are pursuing this matter for our constituents.

[Kerry McCarthy (Bristol East) (Lab)]

It is good to be in a Westminster Hall debate led by the hon. Gentleman; he is often a fixture here. I thank him for his kind words about my presence in previous debates.

On the energy bill issue, is the hon. Gentleman as concerned as I am about the reports of forced prepayment meters, including for people with extreme vulnerabilities and disabilities? Often those forced prepayment meters lead to self-disconnection because they are more expensive and people cannot afford to keep them topped up. I welcome today’s announcement that there is to be a moratorium on forced prepayment, but we should not have that at all, particularly for people with conditions that require their homes to be heated.

[Jim Shannon]

I do not have that in my notes, so I thank the hon. Lady for her knowledgeable intervention. That issue is hard to comprehend. If we have a decent wage, energy is not a big problem. On the minimum wage, it becomes a problem. When someone is disabled, it becomes an even bigger problem. She is right and I thank her for that reminder. We are all making points that we look to the Minister to respond to. Those with prepayment meters are under especial pressure and we look to the Minister to respond to that.

Removing VAT from energy bills would benefit not only CF families but all of the poor, as they spend a larger percentage of their income on energy bills.

Hospitals should provide free parking. I call on NHS England hospitals to provide access to free hospital parking for people with chronic medical conditions. Most hospital car parking charges are already abolished in Wales and Scotland, and Northern Ireland is set to abolish them in 2024. For once, the mainland needs to catch up with the regions. However, there are worries about potential delays to that coming into effect, given that there is currently no sitting Northern Ireland Assembly.

The guidance from the Department of Health and Social Care for NHS trusts in England makes it mandatory for parking to be free for those with blue badges, those attending as an out-patient three times a month for at least three months, and parents of sick children staying overnight, but it is rare that those with CF meet those criteria. The hon. Member for Stretford and Urmston (Andrew Western) referred to the assessment process, and that has to be addressed.

I am on to ask No. 5. Some 80% of people with CF are pancreatic insufficient, meaning they require a higher calorie diet. During hospital appointments and in-patient stays, it is vital that they have access to affordable food. However, NHS England’s national standards for healthcare food and drink do not refer to a need to ensure that affordable food is available in hospital cafés and canteens. That must change because there are people who cannot afford the right sort of food, but who need it.

--- 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.

--- Later in debate ---

[The Minister for Social Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Ms Harris. I thank the hon. Member for Strangford (Jim Shannon) for not just securing the debate, but the tone in which he conducted it and his well-established support for the cystic fibrosis community. His continued presence at cystic fibrosis debates over the years has impressed on the Government the vital role that public services play in supporting people with cystic fibrosis, as well as driving home the stark realities of living with the condition. I also thank him for his kind works to me as a Minister in the Department of Health and Social Care.

I pay tribute to all hon. Members who have taken the time to speak in the debate. The hon. Member spoke powerfully about what it is like for people living with cystic fibrosis and the challenges and costs, including the cost of medication, food and energy and the loss of income, drawing on the good work in the Bristol University report, “The Financial Costs of Cystic Fibrosis”, which I have indeed read. I thank my hon. Friend the Member for Ashfield (Lee Anderson), who spoke powerfully from his personal experience of his wife living with cystic fibrosis. He talked about the extra heating and food costs and the need for 4,000 calories a day for somebody with the condition, which practically is expensive to do. He spoke about how it is a 24-hour challenge and, indeed, what the nights are like living with someone with cystic fibrosis. I welcome the optimism he brought to this Chamber as he spoke about some of the improvements to quality of life thanks to medical innovations.

My hon. Friend spoke powerfully about the CF warrior in his constituency—little Amelia Rose Ratcliffe—and what her life and, particularly at the moment, the life of her parents looking after her is like. Again, there are a lot of extra costs and all the extra trips for appointments and to the hospital. It was good to hear that there is free parking at his local hospital. He spoke powerfully about the constant worry for parents and how there are lots of little Amelias and their families all around the country. As a parent myself, I can imagine how worrying it would be for the parents of a child with a condition such as cystic fibrosis.

I think this is the first time that I have spoken in a debate with the hon. Member for Stretford and Urmston (Andrew Western), so I welcome him to Parliament. He spoke about Eva, who is older than Amelia and in school year 11, and about how she has missed a lot of school and the challenges and worries that brings—for instance, in respect of what her life will be like after school and what employment opportunities she will have. In particular, he brought into the conversation the issue of the anxiety that adults and especially young people with cystic fibrosis experience, as well as the broader mental health impact. Those are really important issues for us to discuss.

It was also good to hear from the hon. Members for Rutherglen and Hamilton West (Margaret Ferrier), for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy), and, of course, from my fellow Front Benchers, the hon. Members for Linlithgow and East Falkirk (Martyn Day) and for Denton and Reddish (Andrew Gwynne). It has been good to have this number of people contributing to a debate on this subject in Parliament.

I wish to recognise the fantastic work undertaken by the Cystic Fibrosis Trust, which advocates on the behalf of people living with cystic fibrosis and their families and continues—very effectively indeed—to bring their needs to the attention of parliamentarians. The work of the trust to help people with the increased financial burdens associated with cystic fibrosis, be it through direct financial assistance or by providing advice and information to those in need, is substantial and should be commended. The trust’s continued support for people with the condition, along with the support provided by other voluntary sector organisations, is invaluable.

During this debate, we have talked and heard about the pressures that face people with cystic fibrosis because of the increased cost of living; indeed, those pressures are set out clearly in the report from the University of Bristol. Although the increased cost of living affects us all, it has been rightly acknowledged by the Members present that the cost of living situation for people with cystic fibrosis is far more acute than the pressures that face most people.

The majority of people with cystic fibrosis will claim at least one form of benefit, with many claiming two or more benefits, and I know how important that money is to those who rely on it. As a country, we will spend around £66 billion this financial year on benefits to support disabled people and people with health conditions. In fact, specific spending on the main disability benefits—personal independence payment, disability living allowance and attendance allowance—is more than £7 billion higher in real terms than it was in 2010. Significant amounts of money are going to those who claim benefits, including disability benefits, but I have clearly heard the conversation today about how life can still be very hard for those with cystic fibrosis who claim benefits.

The Government are committed to helping those with cystic fibrosis who are able to work to do so. Our goal of reducing the disability employment gap remains, and we continue to support disabled people to start, stay and succeed in work. We do this through a range of mechanisms which, particularly for cystic fibrosis, take into consideration the impact of such a condition on someone’s ability to work. For instance, mechanisms include increasing work coach support in jobcentres for people with health conditions who receive universal credit or employment support allowance, and disability employment advisers in jobcentres who offer advice and expertise on how to help disabled people and people with health conditions into work.

For people who are in work, the Disability Confident scheme encourages employers to think differently about disability and health, and to take positive action to address the issues that employees face in the workplace. Also, the information and advice service provides tailored guidance on supporting and managing health and disability in the workplace. In addition, we support Access to Work grants towards the extra costs of working beyond standard reasonable adjustments, to ensure that people such as those with cystic fibrosis who can work have the support that they need to do so.

Several Members spoke about the cost of energy. To help with the rising cost of energy, our energy bills support scheme is delivering a £400 non-repayable Government discount in instalments over six months to help 29 million households with energy bills over the winter. The energy price guarantee, which saves a typical household around £900 this winter, will be extended to April 2024. Also, over the past year there has been extra support for people on means-tested benefits such as universal credit, to help them with the higher energy costs we have been talking about. Sums of £650 were paid out in two payments last summer and November to households in that situation, with an additional £150 for those on disability benefits.

The household support fund, which is £1.5 billion in total, has gone to local authorities to provide support to the most vulnerable people in their communities. Local authorities judge who most needs that help and how best to give it. Local authorities have provided support to help with energy costs, and sometimes specifically to help people whose health needs contribute to their finding it difficult to afford their extra energy costs. The fund was intentionally distributed in such a way as to give local authorities the flexibility to use it most effectively to help their communities and the people they know most need help.

Let me address some of the concerns expressed about the costs directly linked to cystic fibrosis, such as prescription costs and challenges in attending appointments. It is true to say—it has come up this afternoon—that not everyone with cystic fibrosis will qualify for free prescriptions, but there are prescription charge exemptions in place in England to help patients with the greatest need to afford prescriptions. For instance, people with cystic fibrosis who receive benefits may be exempt through the NHS low-income scheme.

Those who have to pay NHS prescription charges and need many prescription items can save money with a prescription prepayment certificate, which allows people to claim as many prescriptions as they need for a set cost. A three-month prescription prepayment certificate, which costs £30.25, or an annual one, which costs just over £108, will save people money if they need four or more items in three months or 12 or more items in 12 months. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 a week.

[Kerry McCarthy]

I understand what the Minister is saying—it is said every time we raise this issue—but the only reason why people with cystic fibrosis are not covered by the rules that apply, say, to people with diabetes is that cystic fibrosis was seen as a childhood disease, and it was thought that people with cystic fibrosis would not live past the age of 16. That is an anomaly. It is good that they can get the season ticket, but they should not be treated like that. If they had survived beyond the age of 16 when the rules were brought in, they would not be treated like that now. Does the Minister therefore agree that it is still unfair?

[Helen Whately]

I absolutely hear the hon. Member’s argument, and similar points were made during the debate. As the Minister with oversight of major conditions, cystic fibrosis is not the only condition about which I have received letters, parliamentary questions and lobbying in general asking for exemptions to prescription charges. We cannot just look at cystic fibrosis in isolation; a similar argument could be made in relation to a number of other conditions. As I have set out, the way the system works is specifically designed to help people on low incomes with the cost of prescriptions and make it more affordable for people who have to get a lot of prescriptions during the course of a year.