Cystic Fibrosis: Living Costs

Helen Whately Excerpts

Thursday 2nd February 2023 Westminster Hall

[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.

[Jim Shannon]

I want to follow on from what the hon. Member for Bristol East (Kerry McCarthy) said. I think I referred in my contribution to the 1968 legislation. The perception at the time was that children who had CF were not going to survive, and that therefore there was no need to include CF, but today there are more adults who have CF than ever. The point that I am making is that things have changed. Will the Minister convey that information to the DWP in as strong a fashion as we have in this Chamber, and ask the DWP to look at that? I know it is not the Minister’s responsibility to look at that, but if that is agreeable to her, it would be helpful.

[Helen Whately]

As ever, the hon. Member is extremely persuasive. I will be happy to take that up with ministerial colleagues who are responsible for prescription charges, but I do say that this is the case not just for cystic fibrosis. We should be aware that we would be similarly lobbied on behalf of other conditions, so we need to be aware of the breadth of the issue raised. However, I shall be happy to take up the matter with ministerial colleagues.

I want to pick up on the cost of attending medical appointments, which was also raised. To help people to get to appointments, the NHS healthcare travel costs scheme provides financial assistance to eligible patients who need assistance with their travel costs. That includes patients in receipt of a qualifying benefit and those on the NHS low-income scheme.

Another way to alleviate the cost pressures of medical appointments for people with cystic fibrosis—I stress that this is only where appropriate; I do not want to be misconstrued—is for appointments to be virtual. NHS England is supporting NHS providers to embed and spread the use video consultations innovatively, where that is the right thing for a patient, and in discussion with the patient in respect of their individual needs. For some patients, that is helpful in reducing the number of journeys they make to appointments—but I am clear, and I know very well, that some appointments should and have to be in person, particularly whenever anybody wants that.

[Jim Shannon]

I tried to illustrate this point earlier, but although I understand that, with the restructuring of hospitals, not every hospital can specifically respond to everything—hence the centralisation of medication and healthcare—when it comes to cystic fibrosis and getting an appointment with a consultant, physio or whoever it might be, one factor is the distance that a great many patients have to travel, especially those in rural areas. The Minister has said that those on benefits can qualify for travel costs, but for some people it is not the cost alone; it is the travel itself. I am sorry for going on a wee bit, Ms Harris, but as I said earlier, for most people with CF that means two to five hours every day of their lives, so the impact on them is greater. The Minister has talked about the physical and mental health aspects, but there are wider aspects, which include the long distances that people have to travel just to get the treatment they are after.

[Helen Whately]

The hon. Gentleman makes an important point about having to travel further for appointments and treatment, which affects people in rural areas generally. Those costs will clearly affect those who have to travel regularly and frequently, such as patients with cystic fibrosis who need many appointments. I am very happy to take away the point he raises and to look at whether we should do something different or specific for those living further away from wherever they need to go for treatment.

I want to pick up on the point about hospital parking, which is clearly another cost that might be affecting people. The Government committed to introducing free hospital car parking for those in great need, including frequent out-patient attenders, as part of our election manifesto. NHS trusts and NHS foundation trusts are required to comply where applicable with NHS car parking guidance, which outlines that disabled patients and visitors should receive free parking for the duration of their attendance at, or visit to, hospital. It also makes it clear that parking will be provided free to all out-patients who attend hospital for an appointment at least three times in a month and for an overall period of at least three months. Importantly for parents of children with cystic fibrosis, parents of children who are admitted as an in-patient overnight should receive free parking between the hours of 7.30 pm and 8 am while visiting their child. I was glad to hear from my hon. Friend the Member for Ashfield that, as I have heard in other places, there is indeed free parking for the patients with cystic fibrosis he mentioned and their families.

I want to mention the innovative work—which also touches on the virtual appointments that I mentioned a moment ago—that Royal Brompton and Harefield NHS Foundation Trust is doing in partnership with NuvoAir, whereby patients use spirometer devices at home to measure lung function and access the results on their phones or tablets via Bluetooth. The results can be shared with a specialist cystic fibrosis clinical team at the Royal Brompton Hospital during virtual consultations, saving the patients time and money while ensuring effective monitoring by the clinical team. There is a balance here, because although the many appointments mean extra journeys, we are doing things to improve the lives of people with cystic fibrosis and to help with the practicalities of the necessary extra treatment and care.

This debate has powerfully brought to life the extra challenges facing people living with cystic fibrosis and their families. It has been helpful to air the issues relating to extra costs and anxiety and the practical difficulties of living with the condition. I pay tribute to all those involved in supporting people with cystic fibrosis and all those living with it. The drive and determination to improve things is inspirational, and I hope that I have reassured everybody about the Government’s commitment to supporting patients with cystic fibrosis and their families.