Thursday 2 February 2023
[Carolyn Harris in the Chair]
Cystic Fibrosis: Living Costs
I beg to move,
That this House has considered the impact of cystic fibrosis on living costs.
It is a real pleasure to be here in Westminster Hall—a bit breathless, but we are here. This is a massive subject, and I am very pleased that many colleagues have been able to attend in support. Looking around the room, I see many Members who have personal stories to tell; they will do so, and their stories will reinforce the questions that we all wish to ask the Minister. I am very pleased to see the Minister in her place, as well as the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne). He and I seem to be in many debates together; indeed, we are a bit of a tag team. It is also a pleasure to serve under your chairship, Ms Harris.
I am the DUP spokesperson for health, so I am pleased to be able to highlight the struggles of those with cystic fibrosis and other lung conditions who have been affected by the spiralling cost of living. As the Minister knows, I will make a number of asks of her in my speech. Most Members will be aware that cystic fibrosis is a progressive, life-limiting genetic condition that primarily affects the lungs and the digestive system. The condition is due to inheriting a faulty gene from both parents that causes the lungs and the digestive system to become clogged with mucus, making it hard to breathe and to digest food—that is the graphic way of explaining what it means. It is common for those with CF to also have CF-related diabetes; I did not know that until I read the research, but I was aware that other effects include osteoporosis and being malnourished. Some 80% of people with CF are pancreatic insufficient, and therefore need a higher calorie intake to maintain a healthy weight.
Roughly 11,000 people in the UK have CF: 9,000 here on the mainland in England, 1,000 in Scotland, 500 in Wales and 500 in Northern Ireland. In 2021, the median age of people with CF who died was 38. Wow—this disease really puts life into perspective. People with CF are particularly susceptible to lung infections, and therefore cannot meet each other face to face due to the risk of cross-infection. Again, the life of someone with CF is really restricted, and is much more difficult.
That brings us to the crux of the issue: living with CF demands an incredibly high burden of treatment, taking at least two to five hours and up to 70 pills each day. People with CF have higher food bills because they need a higher calorie intake to maintain a healthy weight, and higher energy bills because they need to keep their homes warm to stave off lung infections and they may need to power an additional fridge to store sterile medications or essential medical devices such as ventilators. Life as a person with CF is so different from everybody else’s life.
People with CF living in England must pay for their NHS prescriptions, unless they are exempt. Those with CF living in England and, at least until 2024, in Northern Ireland also have to pay hospital car parking charges. The Cystic Fibrosis Trust, in conjunction with Bristol University, commissioned a report entitled “The Financial Costs of Cystic Fibrosis”. I urge the Minister to take time to process that report; if she has already done so, we thank her for that. It will give her a good perspective on my speech, and perhaps on other Members’ speeches as well.
I congratulate the hon. Gentleman on securing another debate in Westminster Hall—he is very successful at doing so, and I thank him very much. According to research, an adult with cystic fibrosis will, on average, incur an additional £209 per month in living costs, while a parent carer of a child with the condition will incur an additional £291. Very few people on an average income have that kind of money to spare. Does the hon. Gentleman agree that dropping prescription charges for people with cystic fibrosis, as has been done in Scotland, would be one way of easing the burden on families?
I thank the hon. Lady for her intervention, and I agree with her. In Northern Ireland, there are no prescription charges—there is no cost—which I believe makes a difference. That is one of my asks of the Minister; there are a lot of asks, most of which are financial, but they are very important.
To follow on from the hon. Lady’s intervention, the report also revealed that the additional cost of living due to cystic fibrosis is over £6,500 per annum. The financial burden is made up of both extra spending to keep well and the loss of income. The key findings indicate:
“Families with CF are more likely to be struggling with their finances than the public—24% of adults with CF and 35% of parents of children with CF described meeting their bills each month as a ‘constant struggle’”—
life is really hard for people with CF—
“compared to 17% of UK households overall.”
The findings continue:
“Food and rising energy bills were the biggest financial concern for people with CF and their families—both are essential to the health and quality of life of people with CF.
For the average family the combined impact of extra spending”
includes “heating, expensive dietary needs” and “attending medical appointments”—the local hospital is not always where they go to meet a consultant or specialist—and “home medical equipment”. Life for a CF patient in their home is almost like being in a hospital.
There is also the loss of income: treatment takes two to five hours every day, which means that they cannot keep down a full-time job; indeed, it would be difficult to keep down a part-time job. The extra spending and loss of income means
“they are thousands of pounds worse off than comparable families.”
The findings continue:
“Three-in-five (59%) of adults with CF had also incurred some form of income loss as a result of their condition in the last two years—for example, reducing working hours, taking unpaid leave to attend appointments or leaving work altogether”,
as many have to.
The Cystic Fibrosis Trust has seen a significant increase in the support needed, with 72%—a big figure—of helpline inquiries since October 2022 relating to financial support. Between October and December 2022, it provided cost of living fund grants to hundreds of households and increased its grants for essential household appliances and white goods. The figures are real—they are quite detrimental and very hard to comprehend.
According to the Marmot review of health inequalities,
“Those living in the poorest neighbourhoods are twice as likely to develop a lung condition, and seven times as likely to die from one than those in the richest areas.”
We have seen the pressures on those with CF, but those pressures are even greater if they live in households where money is tight, where they cannot keep a wage and where they are probably more dependent on benefits. I will talk about that in my requests to the Minister. I know that benefit payments are not the Minister’s responsibility, but they are one of the issues that come off the back of this debate.
Because poorer communities are disproportionately impacted by the cost of living crisis, many of those living with a lung condition are more likely to be struggling from the outset. Asthma and Lung UK found that almost two thirds—63%—of those surveyed with a lung condition are
“buying and eating less food.”
That is when they need food more, need the right food and need it in the right quantity. Eating less food can lower immunity and increase the risk of
“viruses that are the top trigger of asthma attacks”.
It is clear that those who suffer from cystic fibrosis, or from other lung conditions, are in grave need of help. That is my ask of the Minister today. Some of the issues will take cross-Department co-operation, but I believe the Minister is best placed to take them forward. The collective asks that I and others in this debate have are so important.
I should have said at the beginning—I apologise for not doing so—that I thank the Backbench Business Committee for agreeing to the debate. The Committee is very good when we propose debates to it, and it granted this one without any thought whatsoever. We also hoped to have the debate at this time, because it ties in nicely. There are people in the Gallery who have helped me, and probably others in this room, to prepare our contributions for today.
Ask number two, which I have raised before but will raise again, is that benefits must continue to rise in line with inflation. Some 83% of parents of children with CF are receiving one or more type of benefit, and 68% of adults with CF are claiming at least one form of benefit, according to the new report. The Office for Budget Responsibility forecasts that consumer prices index inflation for 2023 will be 7.4%. Those are the figures. If the Government—I always say these things respectfully and they are not meant critically, which is not my form, but I ask them because they need to be said—do not continue to increase benefits in line with inflation, not only those with CF but all the poorest will suffer a detrimental blow.
I thank the hon. Gentleman for giving way again; he is being very generous. Research conducted by the University of Bristol found that a surprising number of cystic fibrosis patients had applications for personal independence payment or disability living allowance rejected, and others did not apply because they did not know what support might be available. Does he have any thoughts about how the DWP could improve awareness of the condition and ensure people are getting the right support?
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.
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.
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.
The hon. Gentleman is making an excellent speech. Does he agree that it is really important that people with lung conditions have the right environment at home and the right heating? The additional costs, especially given the rising energy costs, mean that we must take care of those people who need extra heat. That applies especially to people with CF.
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.
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.
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.
The hon. Gentleman is making a passionate speech, but I want to pull him up on one point. The City Hospital in Nottingham has its own cystic fibrosis unit. The in-patients get a personal chef who cooks them whatever they want 24 hours a day. They have access to snacks, cakes and all the junk food that CF patients need, so what the hon. Gentleman says is not correct in my neck of the woods, where they have their own chef and can eat whatever they want, whenever they want.
I am really pleased to hear about that initiative in the hon. Gentleman’s hospital. That is a model for the rest—well done! We look forward to that scheme being taken on board by the Government.
The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) made a point about ending prescription charges for people with cystic fibrosis in England. I am on my last page, Ms Harris—I am conscious that I committed to a timescale, and I will try to keep to that. I am thankful for the exemption in place in Northern Ireland, but I cannot in all conscience leave it out of any debate on this issue for my fellow British citizens. As everyone knows, I am a great supporter of the United Kingdom of Great Britain and Northern Ireland. I am pleased that my friend, the hon. Member for Linlithgow and East Falkirk (Martyn Day), who will speak shortly for the Scots Nats party, is part of this great United Kingdom as well.
The list of medical conditions that are exempt from prescription charges was written by the Government in 1968, so I think it is time to look at that again. The reality is that, at that time, children with CF were not expected to live to be adults, so CF was not included in the list. However, there are now more adults than children living with CF and it continues to be one of the few chronic, life-shortening conditions where people pay for their prescriptions. One of my asks of the Minister is for that to change.
I thank the hon. Gentleman for giving way; he is being very generous with his time. Is he aware that there is a loophole in the system? Although people with CF cannot get free prescriptions, if they have diabetes caused by CF, they can. It is crazy and unacceptable that they have to rely on getting another disease before they can get a free prescription.
I thank the hon. Gentleman for his intervention, which reveals another anomaly. The list of questions for the Minister is getting longer, but I know she will be able to respond.
Ending prescription charges for the estimated 2,500 people with CF who are not currently eligible for free prescriptions could cost the Exchequer as little as £270,250 per annum. That is not a big cost. The Cystic Fibrosis Trust believes that ensuring that people with CF receive free prescriptions will mean they can live better, healthier and longer lives, ultimately reducing the burden on the NHS. It is vital that there is an urgent review of the medical exemption list to ensure that people with CF across the UK have equitable access to free prescriptions.
I thank all Members for their contributions and interventions. I look forward to the contributions by the SNP spokesperson, the hon. Member for Linlithgow and East Falkirk, and the shadow Minister, the hon. Member for Denton and Reddish. I thank the Minister pre-emptively for her response, for which I have high hopes. I genuinely know that the Minister has a heart for effecting real change—and that, I believe, is what is needed today.
It is a pleasure to serve under your chairship, Ms Harris.
I have an interest in this subject because, as hon. Members will know, I am part of the CF community, in that my wife has cystic fibrosis. She was not diagnosed until she was 18 years old, so her journey was a little bit different from that of most CF patients, who are diagnosed at birth using a simple test. Obviously, at the age of 18, having just finished school and done her A-levels, she was getting ready to head off to university and start her new life, so it was a shock to be told by the doctor, “You’re not going to live beyond the age of 30.”
However, she did live longer than the age of 30. With medication and care from our health service, she has led a decent life. Six years ago, she had a double lung transplant at Royal Papworth Hospital and she is doing all right—she is getting about and going about her business. We are forever grateful to the NHS. So I know a little bit about cystic fibrosis. I know what it is like to live with somebody who has CF and about the extra challenges and costs involved.
There are costs—just little things—that you would not even think about if you did not know someone with CF. The hon. Member for Strangford (Jim Shannon) is quite right that heating your home is crucial. It is also the food: my wife has to eat about 4,000 calories a day. She is basically like a stick insect, my missus—she is ever so thin. She cannot put weight on; she has to eat 4,000 calories just to maintain that weight.
Pre-transplant, my wife had to stop in the house to keep warm. If we went out for food, as we did on many occasions and wished we had not, the cold air made her sick—it made her cough. People with CF cough and cough until eventually they are sick. That messes up their diabetes, and then they have to eat more food to keep the weight on. It is a 24-hour challenge.
When you wake up in the middle of the night, your partner can be coughing. It is not just coughing; there can be a cup full of blood at the side of the bed, because blood is coming out of their lungs. You think, “My goodness, this is horrible. They’re going to die.” But they are not, because that is normal for a CF patient; that is what they do. You have to spend the night pounding their backs and giving them percussion, to make sure the mucus comes up.
But since I have been here we have made great leaps with this new drug—Trikafta—which we agreed to fund a couple of years back. That is a game changer, and although there are challenges for CF patients, and they have the extra costs involved, we are also seeing great innovations in medicine, which are making sure that they live longer and have a better quality of life. CF patients nowadays can have—if not a more normal life—a good quality of life compared to what they did 20 or 30 years ago. As I said, Trikafta is a game changer. When it was introduced a few years back, I got lots of emails from families with little children saying, “We’re over the moon.”
In Ashfield, we have a little CF warrior called Amelia Rose Ratcliffe. She was a lockdown baby and was born on 12 October 2020. I have been to see her. She is a gorgeous little girl and dead clever. She lives with her mum and dad and her brother, Alfie. To be told, as a parent, that your kid has CF—I really don’t know you cope with that. At one time, it was a death sentence, but now, with innovations in medicine, it is a lot better.
The family is a middle-income family, and they are really feeling the pinch. Like I say, keeping the house warm is so important. Then there are the nappies: CF patients, whether children or adults, go to the toilet more—it is as simple as that. So if you have a CF baby, the nappies are another extra cost. There is other equipment you have to buy; you can buy these vibration vests, which shake the chest and clear it of mucus. People have to buy them privately; they are about four or five grand —they are a lot of money, but if you have the money, I am sure you would do anything for your children.
There are the constant trips to the hospital—it is a lot of trips. The hon. Member for Strangford mentioned parking fees. We are lucky at our local CF unit, because the patients can park for free, so that is not a problem, but I wish other trusts would take a leaf out of their book. Blowing machines and percussion machines are other stuff you can buy—the NHS is pretty good at supplying them. Parents are always looking for lots of stuff to make their child’s life more comfortable and to prolong it, and to give their child a better quality of life.
That is what it is about: having that quality of life. Since my wife had a transplant, her quality of life has been a lot better, and we thank our donor’s family every day. That is another thing we do not really think about in these discussions: eventually, without the right medication, some patients will need a transplant, and that is a matter of life and death—my wife would not be here now without a transplant.
I spoke to Amelia’s mum, Holly, last night and asked her if she wanted me to say anything in this debate, because she cannot be here and obviously cannot speak here. She wrote a few words down for me, and I want to read them out:
“Being a cf parent is one of the hardest things I have ever had to go through. Not just physically, but mentally too. Dealing with the condition in itself is hard enough, having no cure available. Endless physio, daily routines, no days off, hospital stays, hospital trips and constant need for medications just to keep her… well… and … it’s sometimes not enough to keep her well. The constant worry for the future and what the future holds for Amelia, really plays heavy on our minds. But we try and stay as positive as possible, as we have no other choice but to take every day as it comes. It’s draining physically, from running around finding the medication, as there are a lot of shortages for certain cf medicines. So going to a number of pharmacies to find medication is a strain. There is no break, and it is a full-time condition 24/7. The price increase on everything with the cost of living adds extra strain and other things in life have taken a back seat.”
She finishes by saying that she wishes the Government could help the whole CF community as much as possible, and she thanks us for discussing these matters today. That is quite good coming from Holly.
I spoke briefly about prescription charges. My wife was diagnosed with CF at 18. She obviously had to pay for her prescriptions, but then, when she got to 23 or 24, she was—not fortunately—diagnosed with diabetes. Because she had diabetes, she then got free prescriptions. The two diseases are so contradictory: for one disease, CF, you have to eat a lot of high-calorie junk food such as burgers and chips, which is a dream for most of us, but that totally contradicts diabetes, so regulating your insulin is a constant struggle. My wife always says to me that she would sooner have CF than diabetes, even though CF can be a killer. That is the struggle people have to manage, and it is a constant job.
We have talked about free prescriptions. The hon. Member for Strangford said that the cost would be £200,000; that is about the average wage of a premiership footballer, so I do not think it is too much money. But we have to be careful, because not every CF family is poor; there are a lot of CF people who go to work and have good jobs and careers, and any support should be targeted at the most vulnerable families, because there are some very vulnerable CF families out there who do not have much money. For a CF family like mine, I am prepared to pay a little bit more and not have a benefit to make sure that my neighbour, who does not have that money or that support, gets a little bit more.
I know that the Minister is listening, and that she has a big heart. There are lots of little Amelias all over the country, and there will be lots of CF families watching this debate—I know that Amelia’s family is watching. There are lots of people in the CF community and from the Cystic Fibrosis Trust who will be encouraging people to keep tagging me on Facebook and making a nuisance of themselves, but I am glad they do, because we need to debate this important issue in this place; if we cannot change things here, I am in the wrong place. So thank you, Ms Harris; this is a great debate.
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.
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.
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.
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?
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.
I am grateful to the hon. Member for Strangford (Jim Shannon) for securing this debate on the impact of cystic fibrosis and for covering the issue quite comprehensively. Cystic fibrosis is a chronic condition that affects the lungs and has many other serious side effects. It is one of the UK’s most common life-threatening inherited diseases; about 10,800 people across the UK currently have it.
There can be little doubt as to the profound impact of cystic fibrosis on one’s life. We must recognise that the current cost of living crisis disproportionately affects those with disabilities, including those with cystic fibrosis. This has been well illustrated in today’s debate by a range of Members who gave examples of direct lived experience from their families and constituents, in particular the hon. Members for Ashfield (Lee Anderson) and for Stretford and Urmston (Andrew Western), who both did so excellently.
A report from the University of Bristol put the additional cost of living with cystic fibrosis at £6,500 a year. The dietary requirements alone—good nutrition is vital to support the need for 150% to 200% more energy —represent an alarming cost for many. As the hon. Member for Strangford mentioned, people with cystic fibrosis may have to take as many as 70 enzyme pills to help to digest food: an absolutely staggering number. As well as that, most people with the condition require 20% to 50% more calories a day than people without it, while some may need considerably more.
Some people with cystic fibrosis use a wheelchair to get around and oxygen to help them breathe, with sufferers often having to undergo a rigorous daily regime of treatments to stay healthy. All this comes with costs attached, and often relies on an individual or their family having sufficient income to cover it.
Cystic Fibrosis UK’s report, “The cost of cystic fibrosis”, shows that 87% of people with cystic fibrosis are worried about the cost of living, and that this is a growing concern for many in the community over the coming months. The report also found that one in three people with cystic fibrosis had missed a hospital appointment due to the cost, one in three had run out of food before they had enough money to buy more, and one in three had to prioritise one basic essential over another.
The impact of shielding and lockdowns as a result of the covid-19 pandemic and the rising cost of living have added even further financial burden for many people with cystic fibrosis. Extra life costs for sufferers and their families—spending more on essential goods and services such as heating, insurance, specialist diets, equipment and therapies—mean less money in their pockets, with the result that they are more likely to have a lower standard of living, even when they earn the same as an adult without the condition.
In England, cystic fibrosis is currently not one of the medical conditions that exempts people from paying prescription charges. In contrast, as we have heard already, the Scottish Government have scrapped all prescription charges. It is particularly concerning that 25% of people with cystic fibrosis use their benefits to pay for prescriptions that are essential to live with the condition. Some 44% of people with cystic fibrosis said that they rely on statutory sick pay while sick. I continue to oppose the rules around statutory sick pay, which fall far short of meeting a dignified standard of living and are not flexible enough to meet real needs, as the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) highlighted earlier. Workers need to earn at least £120 per week to be eligible for statutory sick pay, meaning the lowest earners and those working part time are more likely to miss out on income support. As we have heard, many with cystic fibrosis fall into those categories. The UK has one of the lowest sick pay rates in the OECD. The current rate of £99.35 is wholly inadequate, and one in five workers is not eligible for it. Groups most likely to miss out are women and those in insecure work. I have repeatedly called on the UK Government to increase statutory sick pay in line with the real living wage, make it available to everyone by removing the qualified worker and earnings requirements, and extend it to 52 weeks instead of 28.
Heating and energy costs are another area where sufferers typically face higher monthly bills than others. As has been mentioned, removing VAT from energy bills would help. I also support the idea of reimbursing additional costs for lifesaving medical equipment powered at home. Perhaps it is time to investigate the possibility of effectively prescribing energy for some conditions.
The SNP will continue to urge the UK Government to use all the reserved powers at their disposal to tackle the cost of living crisis on the scale required. That includes access to borrowing, providing benefits and support to households, and ensuring that those benefits rise in line with the cost of living. Tackling VAT on fuel, taxation on windfall profits and regulation of the energy market are all areas where the power is currently reserved to Westminster. Until the Scottish Parliament has full power over those areas, we require action from this place. I look forward to the Minister’s response.
It is always a pleasure to respond on behalf of the shadow Health and Social Care team, and to see you in the Chair, Ms Harris, guiding our proceedings. I sincerely thank my hon. Friend for securing this important debate—I know the convention is to call him the hon. Member for Strangford (Jim Shannon), but he is my friend. He always manages to find a way of getting pressing issues such as this one, which are all too often overlooked by this place, discussed on the Floor of the House. I am grateful for that, and for the comprehensive and detailed way in which he set out the case before us. This has been a good debate.
I thank the hon. Members who made short contributions, such as the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) and my hon. Friends the Members for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy). Coming to the substantial contributions, I sincerely thank the hon. Member for Ashfield (Lee Anderson) for sharing his personal experiences. It is often difficult to do that in this place, and he added a great amount of knowledge, detail and worth to our considerations. I am sure that the Minister will feel the same. On behalf of the whole House, I send our best wishes for the future to him and his wife, and to Amelia and her family. Sharing our constituents’ personal experiences is also important, because we are sent here to advocate for them.
I also thank my hon. Friend the Member for Stretford and Urmston (Andrew Western). He has certainly hit the ground running as a newly elected MP. He is already making eloquent contributions following the by-election, including today on behalf of his constituents, Penny and Eva. In a similar vein to what I said about the hon. Member for Ashfield, it is important that real-life experiences are articulated in these debates.
The cost of living crisis is impacting people right across the country, as we are all too aware with our constituency caseloads. We all hear regularly that many constituents are having to make the difficult choice between putting food on the table or heating their home. It is all too commonplace for constituents to open their energy bills with a feeling of dread in the pit of their stomachs. Many have no idea how they will get through the next week, let alone month.
For those with cystic fibrosis, however, the problems are even more challenging. As many Members highlighted, they are much more likely to be struggling with their finances than the general UK population. They are at a significant social and economic disadvantage. As we have heard, CF is a genetic condition that affects almost 11,000 people in the United Kingdom. People with CF experience, as we heard graphically from the hon. Member for Ashfield, a build-up of sticky mucus in the lungs, digestive system and other organs. It can affect multiple parts of the body, with symptoms including, but not limited to, reduced lung function, increased susceptibility to infection, weakened bones, liver disease, diabetes and more.
Households affected by CF face a median loss of about £564 a month. That financial hit would be extremely difficult in favourable economic circumstances, but in the current financial context it is nothing short of devastating for too many people who live with CF. As the Cystic Fibrosis Trust points out, many people with CF incur a “double-hit” to their finances by having to spend more to keep themselves healthy and being forced to make different decisions about education or employment opportunities.
Jess, an adult living with CF, said:
“Living with CF has always caused my life to be unpredictable, which has cost me financially as well as in many other aspects of my life”.
Jess sums up what many people living with CF know all too well: in almost every aspect of day-to-day living, it is more expensive to be a person with CF.
Energy bills are a prime example. Many people with CF have to use nebulisers, feeding pumps, electric sterilisers and other energy-intensive appliances for their health. That means that the median energy cost for an adult with CF is £26 more than a typical bill. For a child with CF, that climbs to £36 more. I would be interested, then, if the Minister could set out what assessment the Government have made of the current support available to those living with CF.
Furthermore, like Members from across the House—this is not a party political point—I am really concerned that, although energy bills are predicted to rise to an average of £3,000 from April, the Government have still not yet set out their plans to support households beyond that date. Will they explain what is likely to happen, particularly for people with additional costs that they cannot do anything about because of the need for medical assistance? Extra support would benefit people across the country and households affected by CF, which are particularly vulnerable to energy price rises.
I also want to raise the issue of access to benefits with the Minister. I know this is not her direct responsibility, but I am sure she is in dialogue with colleagues in the Department for Work and Pensions. As has been said, disability living allowance and PIP were the most commonly claimed benefits from people living with CF. However, as the Cystic Fibrosis Trust makes clear, a surprising number of those with CF have either been turned down or have not applied for support because they expect to be refused.
CF is a changeable condition. Many people living with it have good days as well as bad days, and that can lead those applying for benefits being unfairly declined or facing stigma in accessing support. What assessment has the Minister made of access to welfare support for people with CF, and are the Government taking any steps to improve access for those with the condition?
Labour has committed to overhauling routes into work for sick or long-term unemployed people and doing away with some of the gruelling reassessments. We have pledged to guarantee extra support for flexible working for those with chronic conditions, and I would like to see that pledge matched by the Government today. It is something that the shadow Front Bench would be willing to support the Minister in pursuing, as she has responsibility for this matter. I appreciate that the Minister works in the Department of Health and Social Care, but she must realise that many of the levers to improve the lives of people with cystic fibrosis sit in other Departments, including the DWP. Will she commit to working cross-departmentally on the issues we have discussed to improve the lives of those living with serious conditions such as CF?
CF is a difficult enough condition to manage without having to face systemic, financial, employment and social barriers, too. The Government need to take the experiences of those living with cystic fibrosis seriously and try to fix the issues we have been discussing. The tools are there for the Government to act. That means ensuring that support is in place to guarantee that those living with acute conditions like cystic fibrosis cannot just make it through the cost of living crisis, but in future can lead lives that are meaningful, joyful and supported by us in this place through the welfare system and employment support. The Government will have our support in making that happen.
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.
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?
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.
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.
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.
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.
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.
I thank all Members for their contributions. I thank the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for her interventions on costs, benefits, and employment issues; she is always very wise. I thank the hon. Member for Blaydon (Liz Twist) for bringing her knowledge about lungs and asthma, which are part of this subject matter, from the APPG for respiratory health. I thank the hon. Member for Bristol East (Kerry McCarthy) for her efforts over the years. She referred to mental health, because physical ailments sometimes spill over into mental health issues.
We are all indebted to the hon. Member for Ashfield (Lee Anderson) for his personal story, because he described what it is like to live with extreme CF. We thank him for that story and for what he does for his wife—I know she appreciates it greatly, particularly with her diabetes. We also appreciate the other personal story about Amelia; I never realised that people so young could be affected.
The hon. Member for Stretford and Urmston (Andrew Western) referred to his constituent Penny Mitchell and her daughter Eva, to DLA and PIPs, to the extra water and food that people may need, and to the problems that some experience in securing employment. My friend the hon. Member for Linlithgow and East Falkirk (Martyn Day) emphasised how CF sufferers can pay £6,500 a year and referred to how CF patients have to prioritise aspects of their lives, to acceptable levels of benefits, and to energy costs.
I genuinely always love the contributions of the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), because they are full of detail and evidence-based knowledge and propose many good ideas. He referred to people choosing between putting food on the table or heating their home, to how the condition affects multiple body parts, to its unpredictability—people do not know what the next day will be like—and to welfare support and the DWP.
I am pleased that the Minister showed her heart in how she responded to our requests. I welcome what the Government are trying to do with the steps they are taking. The Minister has heard our stories both individually and collectively on the behalf of our constituents. We want the benefits to be reviewed, and I am pleased that the Minister is prepared to take that to the DWP. Adults with CF today need the system to change. While every person with CF would love to be able to work, the reality is that they cannot.
I thank the Minister for her response and thank everybody else for their contributions. I hope that on the behalf of those in the Gallery today representing people with CF, we can do better collectively. That is what this is about, and I am sure that the Minister will be as energetic as we are in making that happen.
Question put and agreed to.
That this House has considered the impact of cystic fibrosis on living costs.
High Income Child Benefit Charge
[Graham Stringer in the Chair]
I beg to move,
That this House has considered the High Income Child Benefit Charge.
It is a pleasure to serve under your chairmanship, Mr Stringer. I put on record my thanks to the hon. Members who supported my application for this debate, and to the Backbench Business Committee for granting it and the Minister for attending.
I invite the House to consider the unfairness of the high income child benefit charge, and the ineffectiveness of its administration. The high income child benefit charge, which for brevity I will forthwith refer to as “the charge”, has its origins in the 2010 Conservative party conference, when George Osborne—the Chancellor at the time—proposed withdrawing child benefit, a previously universal benefit, from higher-rate taxpayers. One might initially approach that as a reasonable proposal; however, the reality is that the charge has consequences for some who do not consider themselves to be on a high income, as it ignores family size, how many earners are in the household, and what disposable income is available after basic needs such as food, housing and energy costs are all met.
Mr Osborne modified his proposals in the 2012 Budget, and went on to announce that, from January 2013, child benefit would be clawed back from families when the highest earner had an adjusted net income of between £50,000 and £60,000. The detail of how the adjusted net income works after taking account of any gift aid or pension contributions, and how those with a £60,000 adjusted net income effectively lose all entitlement to child benefit, was well set out in Westminster Hall by the hon. Member for South Thanet (Craig Mackinlay) during a debate that he secured on the charge in 2019.
I congratulate my hon. Friend on securing this debate. The high income child benefit charge is too complicated, which leads to many households that are entitled to child benefit not claiming it. What they may not realise is that not claiming means that they do not accrue the national insurance credits that claimants are given until a child turns 12, impacting on state pension and other benefits if one parent is not working. Does my hon. Friend share my concerns about that knock-on effect?
I do indeed share my hon. Friend’s concerns, and I will come on to them in my speech, although she has summed them up more succinctly than I have in the verbiage I am about to read.
In the previous debate, the hon. Member for South Thanet said that he had
“not found figures for how much the clawback and the lack of take-up of child benefit have saved the Treasury”—[Official Report, 3 September 2019; Vol. 664, c. 60WH.]
but estimated it to be £2 billion to £3 billion a year. I would be interested to know from the Minister whether the hon. Member’s estimate was accurate; I will return to the financial implications of the charge later. The hon. Member went on to say that its administration was
“a salutary lesson in how not to withdraw a universal benefit through the tax system. What we have on the statute book, which runs to many tens of pages of tax law, is the truly mad basis of trying to claw back a benefit. It is not related to overall family income, which many people describe as one of the real drawbacks of the system.”—[Official Report, 3 September 2019; Vol. 664, c. 63WH.]
I have several constituents who agree with the hon. Member—indeed, this goes to the heart of why the charge is seen as unfair. One of my constituents, Andrew Malloy, summed it up when he asked why a family with one parent earning £50,100 could be hit with a tax payback, while a family with two parents earning over £49,000 each was not affected. He has a valid point: a household with a total income of over £99,000 can still receive its full entitlement to child benefit. Shaun Boyle also struggles to understand why that is the rule, as households earning much more than his are entitled to benefits that his household is not. After deliberations, he concludes that
“this cannot be a fair system.”
From my questioning and research, I am inclined to agree with him entirely.
David Stuart is another constituent who stopped his child benefit payments in 2018 after only becoming aware of the high income tax threshold when his second child was born in November 2017. However, that did not stop His Majesty’s Revenue and Customs pursuing him for an overpayment of £6,000 with interest and five years of penalties covering the years from 2016 to 2020 for his two children. I raised David’s case directly with HMRC. It agreed it had made an error both in its assessment and in asking him to contact the child benefit office to get proof of the cessation. The HMRC respondent added:
“I will be providing feedback to the business in order to learn from our mistakes and avoid the same from happening again in the future.”
So far, so good. But David had to contact me again just last month as he had once again been asked to provide proof of how much child benefit had been paid. It therefore appears no action was taken to rectify the failings highlighted in his initial complaint, which HMRC said it was going to address.
David also raised the Wilkes case with me, on which the Court of Appeal ruled on 7 December last year. For those not familiar with the case, it addressed whether HMRC could impose the charge by means of “discovery assessments”, which allow HMRC to demand tax outside of the normal four-year assessment limit. The Court of Appeal conclusively determined that HMRC was wrong to impose the charge by discovery assessments—not just in the Wilkes case but on hundreds of thousands of taxpayers in the UK.
Yet a retrospective change in tax law that was announced by the then Chancellor, the right hon. Member for Richmond (Yorks) (Rishi Sunak), in his 2021 Budget, which was then enacted in sections 97 to 99 of the Finance Act 2022, meant that HMRC ensured in advance of the Wilkes judgment that the hundreds of thousands of other taxpayers who were similarly subjected to the charge discovery assessments could not benefit from the Wilkes case.
As David’s case was delayed awaiting the Court of Appeal judgment, he has now received a further discovery assessment for the charge between the 2016 and 2018 tax years. Understandably, he is “totally miffed” that one person’s case was upheld against HMRC, yet HMRC can continue to pursue others in exactly the same circumstances. In light of the Wilkes case, David hopes that today’s debate will shine a light on the poor handling and unfairness of the discovery assessments.
Another constituent, Stephen Waldron, calls the charge “wholly unfair” because child benefit is a payment to support people with the additional cost of raising a family. Stephen also says the charge is “unjust” because it is not based on a household’s total income. He has questioned why, when people decide to pool their resources and live and raise a family together, does the charge not reflect that? Perhaps the Minister can answer that question for Stephen today.
It was 2006 when Stephen first claimed child benefit. In 2013 he received a letter to advise he was not entitled to it, but it continued to be paid over the next seven years by HMRC, who then reclaimed it and blamed Stephen for not telling it. What really upset Stephen was that the demand for over £8,200 included interest and a 20% penalty for “failure to notify” the tax office to file a self-assessment for all those years, despite HMRC being fully aware of his household’s finances.
The circumstances of Stephen’s experience with HMRC over the charge was robustly argued in the 2019 debate, yet nearly two years later HMRC has not dealt with the previous criticisms of its practices. Things worsened for Stephen and many others as the clawback came in the midst of the covid-19 pandemic at a time when job stability was under one of its greatest threats, and he had to use his “safety net savings” to pay the demand.
I fully appreciate that the abbreviated examples of my constituents that I have highlighted today do not reflect the sense of injustice and stress that they have felt. None the less, it is important that the empirical impact of such an unfair policy is illustrated by individual experiences.
I have been tabling parliamentary questions on the charge since April 2019, after it was first brought to my attention. The answers I received at that time stated:
“If total household income was taken into account, information on the incomes of everyone in each of the eight million households receiving Child Benefit would need to be collected and would effectively introduce a new means test. The Government’s approach withdraws Child Benefit from those on high incomes, whilst having no impact on the majority of claimants.”
That implies that the charge affects only a minority. On means testing, the answering Minister in the 2019 debate stated that this would create
“a substantial administrative burden on both the state and families.”—[Official Report, 3 September 2019; Vol. 664, c. 73WH.]
However, we should not forget that the increase in the number of self-assessments that the charge creates brings its own administrative burden.
Another written answer, which referred to the £50,000 and £60,000 thresholds, said:
“The Government believes these are currently the correct level for the HICBC thresholds, but as with all elements of tax policy this remains under review as part of its annual Budget process.”
Those answers are in keeping with the response to a petition I presented in October 2021, which urged the UK Government to re-examine the charge policy to address the disparities it creates and ensure that any revised threshold was aligned with the basic-rate tax threshold. The basic rate of tax breached the £50,000 threshold on 6 April 2022 and thereby brought basic rate taxpayers within the scope of the charge. It is therefore operating beyond its original policy objective to affect higher rate taxpayers.
After presenting the petition and receiving the Government’s response, I was contacted by a non-constituent who works in financial services, thanking me for presenting the petition as it was
“of national interest to any tax payer who earns over £50,000 GROSS per annum”.
They went on to refer to the Government’s response as seeming to say that it was
“too hard to calculate for little benefit”,
and suggested that indexing the base threshold of £50,000
“would be a simple but effective solution to hundreds of thousands of households.”
I am aware of a letter from the Treasury, dated 26 January 2023, that dismisses the suggestion to index the threshold of the charge as it
“only affects a minority of Child Benefit claimants whilst helping to ensure the fiscal position remains sustainable.”
It appears that the Treasury’s position is somewhat conflicted. On the one hand, it thinks the threshold that was set for the charge 10 years ago is regarded as “high income”, and on the other it thinks it is acceptable for the basic rate tax band to breach this threshold.
Another tax-related conflict arising from the charge is that, although ignoring total household income and focusing on the single or only highest earner, at the same time it breaches the principle of independent taxation. It just does not add up to me.
That brings me back to the financial implications of the charge. When claiming child benefit, an affected individual can receive child benefit payments and pay the charge at the end of each tax year by means of self-assessment, and that is the case even if they are employed and normally pay their tax through pay as you earn. Alternatively, they can claim child benefit, but choose not to receive the payments and hence not pay the charge. That is known as “opting out”, and that is what my constituents David and Stephen, whom I mentioned earlier, have chosen to do. However, opting out impacts tax revenue going into the Treasury, with the most recent available figures showing a £15 million drop between the tax years 2013-14 and 2019-20. If the Minister is able to give figures for how much the clawback and the lack of take-up of child benefit have saved the Treasury, it would be helpful to know that the drop in tax revenue has also been accounted for in any figures that might have been found.
The drop in revenue is surprising when we consider that 7,000 more individuals have declared a liability for the charge over the same period. I would be interested to hear any explanation for that anomaly. The most recent available figures also show that the number of people who opted out of receiving child benefit increased by 252,000 between 31 August 2013 and the same date in 2021. That is 252,000 more families being impacted by the charge over an eight-year period. By my reckoning that is a rapidly growing minority, but a minority is what the Treasury’s response from 26 January still insists it is.
Of course, those figures do not account for those who do not make a claim for child benefit. Not everyone with a gross adjusted net income of £50,000 will go through the process of claiming child benefit, which effectively signs them up to completing a yearly self-assessment for the charge.
The latest data on child benefit from August 2021 shows a decrease of 122,000 families claiming child benefit when compared with the previous year, which equates to 215,000 children. Many people will see claiming child benefit as a complete waste of time and effort for little or no gain, or they will simply not make the claim to avoid finding themselves in a position similar to my constituent David, who was pursued for a period that he had opted out of. Therein lies a danger, because those who do not make a claim to child benefit due to the thresholds of the charge, will lose out on vital national insurance credits that protect their entitlement to contributory benefits, not least the state pension. That situation invariably affects many women.
There is also the scenario that, for various reasons, not everyone is aware of what their partner earns, respecting the principle of independent taxation. That further deters those people from making a claim for child benefit and, again, it is mainly women who lose out. Will the Minister advise me today if there is any way for women, or indeed affected men, caught in those circumstances to make a retrospective claim for national insurance credits? If not, can that be rectified at the earliest opportunity?
Another unintended consequence of not claiming child benefit is that the child is not then automatically allocated a national insurance number when they reach the age of 16. The scale of that future impact can only be imagined if we use the latest data on child benefit that shows that that will affect 215,000 children in just one year.
Referring to the number of families who claim child benefit, the latest child benefit statistics state
“following the introduction of the HICBC in January 2013, these figures decreased sharply…Following the sharp decrease in August 2013, there has been a downward trend in the number of families and children for whom Child Benefit payment is received. In August 2021, the number of children for whom Child Benefit payment is received is at its lowest level since HM Revenue & Customs (HMRC) began producing these statistics in 2003.”
Given the passage of time since its introduction and the constraints of the current economic climate, does the Minister not agree that it is time to address the many failings of the unfair high income child benefit charge? Is it not time to finally review this flawed policy, make it fit for purpose and thereby truly support households with children?
Ultimately, the best solution to meet the needs of families in my constituency is for the full powers of social security and taxation to be in the hands of the Scottish Parliament. Meanwhile, I hope the Minister will join me, my constituents and organisations such as Child Poverty Action Group in calling for making child benefit a universal benefit again, restoring the value of child benefit and increasing the take-up of child benefit. At the very least, will the Minister commit to reviewing the current policy?
I congratulate the hon. Member for Linlithgow and East Falkirk (Martyn Day) on raising the issue here today. I try to come to Westminster Hall as often as I can, but when I saw the subject of the debate I was very keen to come along and support the hon. Gentleman. I congratulate him on setting the scene so well.
I want to specifically focus on the child benefit threshold. As the hon. Gentleman mentioned, one person could earn £52,000 and their partner could earn £10,000, and they would be disadvantaged. However, partners who both earn £49,000 do not have the same issue. That is an anomaly that we have to try to address.
My party discussed this issue at our parliamentary meeting last Tuesday. We have a slot to move a ten-minute rule motion, and we are minded to bring forward this matter when the time comes. I have raised the issue in the Chamber on numerous occasions, as has my right hon. Friend the Member for East Antrim (Sammy Wilson).
I am pleased to see the Minister in her place—I always am, by the way. I know she always tries to give us a response that helps with where we are, so I await her response with anticipation—no pressure, Minister. We are pleased to see her here and we look forward to her contribution.
The cost of living crisis has had a detrimental impact on people’s finances across the whole of the United Kingdom of Great Britain and Northern Ireland. I have spoken in countless debates on this issue. Those who are struggling the most—working families—are among those who cannot make ends meet.
Child benefit is a great benefit. It was designed to be a helping hand, but instead the concept has become a hindrance for working-class families, and even some who were previously considered to be working class and are trying their best to provide their children with all they can. I am a grandparent now, but when we were endeavouring as parents, we tried to give our children as much as we could, as every parent would. That was not to spoil them, but to give them the opportunities that we perhaps did not have when we were younger.
The hon. Gentleman mentioned the cost of living crisis. The fact that the charge is not uprated in line with inflation means that thousands of liable families are losing part of the child benefit that they are entitled to. Does he agree that this must be swiftly addressed?
I thank the hon. Lady for her intervention; yes, I do agree. Later in my contribution I will ask for the very same thing, because I think it is important that we do so.
We were hoping to present a ten-minute rule motion on this issue in the near future. Our slot is probably in July of this year. I and my party feel that it is grossly unfair that the child benefit cap has remained the same for 10 years, while the price of bread has risen by 30% in Northern Ireland in this year alone. The cost of the diesel needed for people to get to work is up by 30p a litre from 2013, or 20%, while those who invested in electric cars have seen the price of electricity consumption increase from an average of £577 in 2013, with a current price cap of £2,500. Increases are not limited to those essentials. The Government’s retaining of the cap is nothing more than another squeeze of the middle class through taxes. The real burden falls on the middle class, and I, my party and others will do all we can to battle that.
I am pleased to see the shadow Minister, the hon. Member for Hampstead and Kilburn (Tulip Siddiq), in her place, and I look forward to her contribution. No doubt she and others will be saying the same thing.
I am attempting to bring about a change that I encourage the Government to consider. I find it extremely unfair that two parents could be on £49,000 a year and receive child benefit, but one parent can be on £10,000 and the other on £52,000 and they must pay an additional tax charge as a result. That anomaly is critical. A family on £98,000 are okay, but a family on £62,000 are not because one parent earns over the £49,000 or £49,500.
Another issue is that working families feel unable to take a pay rise because they would lose their child benefit and be worse off. I know families who were offered a wage increase from £49,500 and said, “Actually, I’m going be worse off,” and did not take it, so it is a fact of life for many.
A conversation took place in my office just last week on this subject. I always like to put the issues that we debate to my staff members, who give me their perspective. When we discussed it, they said that £50,000 sounded like a very decent yearly income, and it is, but when the cost of living is taken into consideration, these statistics are nowhere near as realistic as they seem. In addition, the high income child benefit charge is collected completely though a self-assessment, whereby individuals who are liable to pay it are required to find an annual tax return and, if they do not do so, they may be charged legal penalties for failing to register their liability and to pay their charge through their tax return, as some 180,000 families have had to do.
It has got to the stage where even families who are entitled to child support are opting out for fear that they will be hit with tax returns that they should have done but perhaps were unaware of. For my generation and the one after that, that was not a problem; we went to work, we received our child benefit, whatever it was, and we were thankful for it. There has been no uplift to the individual salary allowance since 2013—that is 10 years. There has been uncontrollable inflation since 2013, but no uplift for parents.
The Child Poverty Action Group has been in touch with my office, stating that benefit freezes and sub-inflationary upratings mean that child benefit has lost 30% of its value since 2010. One way that can be fixed is for the Government to increase child benefit by just £20 a week per child. That would pull half a million children out of poverty—the very issue that the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) referred to.
I said earlier that more families are choosing to opt out of child benefits due to the tax self-assessment that must be done. Covid also played a part in the reduction in the number of people applying for child benefit, mainly because parents were unable to register new births due to lockdown and there was reduced contact between parents and health visitors. Now that we are more or less out of that era, efforts should be made to reverse that trend.
Many Members, and more importantly many of our constituents, have raised issues about child benefits. No parent should have to sacrifice good work or a pay rise to get the full amount. That is ludicrous. No parent should have to get an accountant to fill in a separate tax return if they earn over £50,000. We must do more to support those parents through child benefits. More importantly, we must ensure that children are protected and that poverty statistics are dealt with. This has become a critical issue in my office, which is why my party is considering introducing a ten-minute rule Bill on it in July. I am sure the hon. Member for Linlithgow and East Falkirk will be one of the signatories when the time comes. We are asking the Minister for some more compassion, understanding and sympathy, given that the process denies some people what they should have by right.
It is a pleasure to serve under your chairmanship, Mr Stringer. I thank my hon. Friend the Member for Linlithgow and East Falkirk (Martyn Day) for securing this debate, which is timely because many families are concerned about their finances and are struggling to make ends meet in the current financial crisis.
There are three key measures or themes have emerged in the debate. The first is that the changes introduced by George Osborne way back in 2013 are unfair and flawed. Secondly, Members from across the Chamber have said that they can help the Minister make the child benefit system fit for purpose. Thirdly, we are asking the Government to implement changes. Even a Conservative Government can introduce the concept of universality again and see whether that is a better solution than the one we have at the moment.
On the first point, like other hon. Members I cannot understand for the life of me why a family with two parents both earning £40,000 a year—a total of £80,000 between them—can claim child benefit unhindered by any other consideration, yet another family in which the main earner’s salary is £50,000 is penalised and the children get less benefit or no benefit at all. How is that fair? How is that equitable?
Claimants whose earnings rise above £50,000 have their benefit clawed back through the tax system, which means that they are exposed to the self-assessment system—in many cases, for the very first time—and incur additional costs in hiring an accountant or tax specialist. How is that fair? How is that equitable?
The £50,000 threshold has never been uprated since 2013 to reflect wage inflation during that period, so more and more families are being unwittingly sucked into the tax trap set by Mr Osborne all those years ago. To compound the situation, taxpayers have been charged penalties for failing to register their liability. It is like the WASPI scandal mark 2: people are not given sufficient information about the changes made by the Treasury, so parents get trapped in the tax liability net without even knowing it.
For many parents, it is simply not worth the hassle of having to navigate through our clunky system, so more than half a million people have elected not to receive child benefit. I thought that might be a win-win for the Government—they save on all those admin costs, get off scot-free by not having to pay child benefit at all and, of course, they do not have to worry about these pesky kids—but my hon. Friend the Member for Linlithgow and East Falkirk has raised some questions that put those assumptions under some scrutiny. Again, I urge the Minister to reply to him so that we can get some clarity about that.
As my hon. Friend the Member for Linlithgow and East Falkirk pointed out, not claiming has some serious ramifications for both the parents and the child. As the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) alluded to in her intervention, for many parents—particularly women, or the lower earner—it means losing out on vital national insurance contributions, which could impact their state pension entitlement. As for the child, my hon. Friend has already highlighted the issue about national insurance cards for 16-year-olds.
The case is clear. The Government need to scale up the threshold from £50,000 to reflect pay inflation from 2013, but also to iron out some of these anomalies to ensure that child benefit is not only fair and equitable, but seen to be fair and equitable for all those families who are currently being penalised.
My second point is about the system being fit for purpose, which, from today, becomes a challenge for the Minister. I genuinely want to hear the solutions that are within her gift. Will she uprate the threshold beyond £50,000 in line with pay inflation from 2013, for example? If the clunky system has to remain, will she look carefully and sympathetically at the inequity of the families I have talked about, where family No. 1 is on £80,000 and has full child benefit, while family No. 2, on £50,000, is caught in the tax trap and offered limited or no benefit?
Will the Minister also consider devolving child benefit to the Scottish and Welsh Governments? Tackling child poverty is a national mission in Scotland. As part of our delivery plan, we already invest £8.5 billion to support families, a huge amount of which—£3.3 billion—is specifically targeted at supporting children. To help to mitigate the effects of the current cost of living crisis on households, our Government have also introduced the Scottish child payment, which they have uprated on one occasion. Better solutions can be found, and I hope the Minister is open to working with the Scottish Government and others to see where further devolution of budgets can take place. Will the Minister also solve the inequity of parents, especially women, who remove themselves from the child benefit tax trap but suffer other consequences, as other hon. Members have already highlighted?
I have left one issue until the end, which is universality. This policy is being driven by the needs of the Treasury, when it should be the needs of children and families. This is not just a challenge for the current Government, but, as the next election looms, a question for the Opposition, who aspire to be in Government. Is it therefore the policy of the Opposition to introduce universality to child benefit? It would be wonderful if that could be confirmed and a firm commitment given today in the summing up.
It is a pleasure to serve under your chairmanship, Mr Stringer. I am covering for my colleague who cannot be here today because of a constituency commitment. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for bringing forward a really important debate today. He spoke compassionately about his constituents, who are clearly struggling, and I applaud him for bringing this matter to the House. He will be pleased to know that Labour always welcomes the opportunity to highlight the significant pressures that families are facing across the United Kingdom, including in my constituency, as the cost of living crisis gets worse.
We have heard how hundreds of thousands more families are being pulled into the high income child benefit charge. The hon. Member for Strangford (Jim Shannon) put it well when he said that a lot of them are not from wealthy families, yet they are still being pulled into that charge. It is sad that hard-working people are having to pay for the chaos caused in recent months, and for 12 years of economic failure.
I want the Minister to explain the fiscal drag of freezing the threshold for the high income child benefit charge. I am sure she will make the case that maintaining the threshold at £50,000 allows the Government to prioritise the majority of families, particularly the poorest households, and that she will talk about difficult choices that have to be made and how taxpayers’ money is best spent. We all agree with that, but the truth is that the current benefits system is not working for anyone, least of all the poorest. A report published by the Joseph Rowntree Foundation last week found that the benefit system is fundamentally “not fit for purpose” and has “trapped” millions of children and families in poverty.
Helping more people into good-quality work must be a priority of social security. Over 1 million people are out of work, despite wanting a job, and yet employers are struggling to fill over 1 million vacancies. I looked at the figures. Employment in the UK is lower now than it was before the pandemic, and the employment rate has had the biggest drop out of the major G7 economies.
A shocking 2.5 million of those who have fallen out of the workforce have done so because of ill health. We know that being out of work is bad for health. The longer someone is out of work for sickness reasons, the more difficult it is for them to return to a job. Unfortunately, it feels like nothing is being done to break that dangerous cycle. We cannot simply write people off. Only 4% of people in the employment and support allowance support group return to work each year. That is a huge waste of the potential of British people, who we know can contribute a lot to the economy.
The hon. Member for Dunfermline and West Fife (Douglas Chapman) wanted to know about Labour’s approach. We would take a very different approach to the benefits system. We would modernise jobcentres, turning them into new hubs that focus on work progression. They would be no longer just a conveyer belt to lower-paid work, but an escalator to well-paid, secure jobs.
I looked at the figures again. Only one in 10 older or disabled people who are out of work are receiving any support to find a job. That is because the Government impose programme after programme on local areas, regardless of their local economic needs. A massive £20 billion is being spent across 49 schemes, administered by nine different Government Departments. Even that statistic sounds so confusing.
The fragmented system is wasting taxpayers’ money and failing to get people into work. In contrast, when some limited local design has been allowed in pockets of the country, such as the inspirational “Working Well” initiative in Greater Manchester, there have been real successes in helping people get back into employment. That is why the Labour party will shift resources and power to the local level and guarantee local innovation in the design and delivery of employment support services.
We also want to address the hindrance to work in the social security system by empowering jobcentres to help to broker flexible working opportunities for those who have caring responsibilities. Crucially, we will reform the Access to Work scheme, for which the waiting list for an assessment has trebled. People now wait months for a decision, and overall the work capability assessment regime leaves too many people trapped in unemployment.
Order. This is not a high-pressure debate and there is plenty of time, but the title is the high income child benefit charge. I am willing to relax and let the hon. Lady go a bit off-piste, but I think she is wandering quite a long way off the subject of the debate.
Apologies, Mr Stringer. You will be pleased to hear that I am on the last bit of my speech.
I ask the Minister to respond to the specific concerns raised today, especially in relation to the growing number of people pulled into the high income child benefit charge. I sincerely believe we need a proper plan to lift families out of poverty. We need to get our economy growing, and we need to offer opportunities for people in every part of the UK. I want to hear what the Minister has to say.
It is a pleasure to serve under your chairmanship, Mr Stringer. I congratulate the hon. Member for Linlithgow and East Falkirk (Martyn Day)—I hope that I pronounced that correctly—on securing this important debate. I say from the very outset that I understand the experiences of his constituents that he described, and I hope that in previous correspondence we have acknowledged the tension—I suppose that is the word—of these points in the tax system, not just in the context of child benefit but across the tax system. There are points of tension where the next rating, if you like, of taxation falls, and those have repercussions. I promise him that I spend a great deal of my time considering that, not just in this context but, as he will appreciate, across many other forms of taxation.
Child benefit is an incredibly important form of state assistance. Historically, many decades ago, in previous generations when women did not tend to work or were not permitted to work in the way that, thankfully, we are nowadays, child benefit was often the way in which they could feed and clothe their children. Although our working economy has, thankfully, changed in so very many ways since then, we as a Government want to maintain that link between the state and helping families to raise children who need the help.
We genuinely understand that, for the lowest paid or the poorest of families, child benefit payments are vital to help families pay for clothing, food and other essentials. Some 7.7 million families are helped with the cost of raising their sons and daughters, and the Government are keen to continue that tradition. That is why, when we had to make difficult decisions in the autumn statement, we protected child benefit in real terms, which means that from April this year, subject to us approving it in due course in the Finance Bill, child benefit will rise in line with the consumer prices index, or 10.1%.
Of course, there are other ways in which the Government and local authorities offer support to parents with childcare responsibilities and costs, including for example early education through the Department for Education’s free hours entitlements and financial support for childcare through tax-free childcare and universal credit childcare offers. We all want to ensure the very best start in life for our beloved children.
The difficult challenges that we face in the wider economy, not just domestically but internationally, are having an impact on families up and down the country. Many of the worries circle around rising prices, or inflation. That is precisely why, in his new year speech, the Prime Minister pledged to halve inflation by the end of the year. We understand that if prices are rising, our money does not go as far. We want to ensure that we can halt the pace at which prices are rising, so that our hard-earned money goes further.
We have also taken decisive action to support households with those pressures over this year and the next, including by helping millions of the most vulnerable households through the additional cost of living payments over this year and next; the energy price guarantee, which will save households £900 this year and £500 next year; and the support for all UK households provided through the £400 energy bill support scheme. But we need to continue with our plan for stability and fiscal prudence and to be responsible with the nation’s finances. That is why we want to ensure that welfare spending remains sustainable and focused on those who most need the help. We continue to support the vast majority of families with child benefit payments, but the high income child benefit charge allows us to maintain that sustainability.
The charge affects a small proportion of child benefit claimants—namely, those who have relatively high incomes. The hon. Member for Strangford (Jim Shannon) questioned the threshold. I hope that I can offer him some reassurance, on a national scale. In 2019-20—the last year for which I have been provided with figures—about 373,000 individuals in the UK declared a HICBC liability, HICBC being the acronym that the Treasury uses; I prefer what the hon. Member for Linlithgow and East Falkirk said—“the charge”. However, the vast majority of those 373,000 individuals have incomes above the UK higher rate income tax threshold of £50,270. That is in the context, as I have said, of 7.7 million families being assisted with the cost of raising children.
Many of the individuals who earn above the £50,270 mark will earn between £50,000 and £60,000, so they will not be required to pay back the entire value of their child benefit, because it is tapered in that £10,000 spectrum. We have, I am told, never aligned the threshold for the charge with the UK higher rate threshold or, indeed, other thresholds for income tax. Of course, I note that in Scotland the Scottish Government have set the higher rate threshold for Scottish income tax at a lower rate of over £43,000. We are very concerned that raising the threshold above the £50,000 figure would come at a significant cost to the Government at a time when support is needed for vital public services.
I was just about to come to the hon. Gentleman’s question about universality, if that is the point on which he is seeking to intervene. He raised the issue of universality, and my response to that would be that he and others are rightly focusing on the challenge of people just over the £50,000 mark or, indeed, making comparisons with couples who individually earn under the £50,000 mark but together obviously earn nearly £100,000. I do not quite know how I would justify extending child benefit to couples who earn significantly in excess of £50,000 each. Perhaps a mile or two down the river, in the City, there may be couples in banking, the finance sector and so on who are earning not just hundreds of thousands of pounds but even more. I for one would much rather that the tax paid by our constituents —those of the hon. Member for Dunfermline and West Fife and mine—was focused on those constituents on whom we have rightly focused, namely the poorest paid, rather than those earning astronomical salaries.
The point that I wanted to make was actually about whether we could get a view on the example that I gave of family 1 and family 2 and the inequity that there is for certain families. It may be that both parents or partners are under the limit but in total they earn a lot more than £60,000. I think that that is something that the Government could look at a bit more generously.
I very much understand this point. I do not know whether the hon. Gentleman was involved at all in the scrutiny of the Bill that became the Domestic Abuse Act 2021, which I had the privilege of taking through the House a year or two ago. Interestingly, one of the challenges that his SNP colleagues put to me, in the context of universal credit, was that universal credit is paid per household. They made the point that, particularly for victims of domestic abuse, they would prefer it to be paid to the individual. The reason why I raise that is that we have a long-standing tradition—since, I am told, the 1990s—of individual taxation. I, as a feminist, am entirely comfortable with being—indeed, demand the right to be—taxed on my income, rather than that of my husband. The system of independent taxation being what it is, every individual, including each partner in a couple, is treated equally and independently within the income tax system. That means that the child benefit charge, sitting as it does within the income tax system, must adhere to those principles; that is the idea behind it. I acknowledge the tensions that the hon. Members for Dunfermline and West Fife and for Linlithgow and East Falkirk have raised regarding those families where people fall just below the threshold, but Governments of all colours must do that kind of balancing when setting thresholds and rates of taxation, and so on. That is why the charge is set as it is.
I am a very simple person, and I am trying to work this out—the hon. Member for Dunfermline and West Fife (Douglas Chapman) referred to this example as well. If two people earn £49,000 a year, it is okay for them to have the benefit, but if one person earns £52,000 a year and their partner earns £10,000, that makes them liable for extra tax. Surely, the Government should look at that again—a collective income of £98,000 against a collective income of £62,000.
It is precisely because we are taxed as individuals. When HMRC considers the self-assessment forms that, I hope, colleagues across the House sent in in good time before the 31 January deadline, those forms will be considered on the basis of individuals’ own circumstances: we do not look at the circumstances of those individuals’ partners and tax them on their partner’s income. That is the underlying principle.
I accept that that principle rubs up against this particular policy, but I would be concerned about doing otherwise, and not just from the perspective of it chipping away at the principle of individual taxation. When we debate means testing, we ought to consider that we would be beginning to ask HMRC to collate data about people’s relationships and family setups in the context of collecting taxation. While there may be circumstances in which that happens, I do think we need to tread very carefully: for example, means testing would mean that individual taxpayers would have to explain their family setup to HMRC. Of course, family situations can change—relationships break down and relationships are formed—and at the moment, that sort of information is not collected by HMRC through self-assessment. I think we would all want to be sure we were comfortable with that information, and the burden of telling HMRC about it, being part of an individual’s self-assessment.
HMRC holds records on individual incomes, allowing it to identify who is liable for taxes, and communicates with those people as appropriate to encourage compliance. Basing the high income child benefit charge on household income would require all families in receipt of child benefit payments to report their household income data to HMRC in order to ensure compliance, which I think would be a significant administrative burden on not just HMRC but, more importantly, the families we are seeking to represent. Of course, as the hon. Member for Strangford has highlighted, some of those claimants will be on very low incomes, nowhere near the threshold of £50,000. Again, I wonder about the unintended consequences for such people.
The hon. Member for Linlithgow and East Falkirk asked me a question about men. I am sorry that I did not have a chance to note it down, but I hope we will be able to discuss it after the debate and that I will be able to provide him with an answer, even if not immediately.
I am keen to address the matter of complexity because, again, I have heard and understood the experiences that hon. Members have highlighted of the complexities for people who perhaps are PAYE employees but have to submit a self-assessment tax return. The reason for that—this is where the tax technicalities of my role come to the fore—is the charge is based on the amount of an individual’s adjusted net income, which is an individual’s total taxable income before any personal allowances and less certain tax reliefs. Using that measure avoids using estimates of income that could result in too little or too much tax being paid. For example, it allows people who have saved more into their pension or have donated to charity to have that reflected in their income self-assessment. That is the only way we have of establishing a person’s adjusted net income, but we have tried to help people with the administration of this. Indeed, there is a calculator on gov.uk to help people work out how much tax they may have to pay, which I hope will be of assistance for colleagues corresponding with constituents.
HMRC takes steps to notify those who may need to complete a tax return, including writing to 70,000 people each year to notify them and outline what they need to do to pay. Of course, families can claim child benefit but opt out of getting payments. That means they do not have to pay the charge but can keep the non-monetary benefits of claiming child benefit, such as the national insurance credits for state pension reasons, which the hon. Member for Linlithgow and East Falkirk referred to.
On the point of families deciding not to claim child benefit, the question was asked, “What does that mean in terms of national insurance credits and numbers?” I hope I can assure the hon. Member by telling him that a national insurance record can be filled in a number of ways, not simply through child benefits. Not everyone will require the national insurance credits that come with child benefits, and individuals may build up sufficient qualifying years over an expected working life of 50 years even if there are some gaps in their NI record, which of course may happen because of caring responsibilities. Most individuals under the age of 50 will get a full state pension with 35 qualifying years, and we encourage people to claim child benefit regardless of their income to help them build the qualifying years of national insurance. In terms of the child’s national insurance number, if a person claims but opts out of receiving payments, HMRC will give that national insurance number to the child automatically, but if the family do not claim at all, there is an online service provided by DWP to enable the child to obtain a national insurance number. I ask Members to please let their constituents know of that service if they are not aware of it.
The hon. Gentleman asked about the Wilkes case and made the point that the changes arising from the case were retrospective. Obviously, we have to have heed to the ruling in that case, so we have legislated to put beyond doubt that the longstanding rules that HMRC uses to recover tax that it discovers has not been assessed can continue to operate in relation to the charge. All the taxpayers who have been assessed were still liable for the charge and nothing in the court’s judgment called that into question. Indeed, I am told that this has been operationalised in recent times. Anyone who has concerns about bills or letters that they receive should be encouraged to contact HMRC, because, when tax is owed, time can be given in the right circumstances to pay it, for example, so that we ensure that we are supporting people with their tax affairs.
I hope that I have addressed many of the interesting points raised by hon. Members across the House on this important topic. I very much understand and welcome the scrutiny that the House brings to this important benefit and the operation of the policy to ensure that the benefit is paid to those families who need it the most. I assure colleagues that we will always keep this and any other tax policy under review. We will listen to colleagues on how the system can be improved for the benefit of families, carers and children. I hope that I have reassured hon. Members or at least explained the Government’s position on the policy, with the need to keep the public finances and, importantly, child benefit on a sustainable footing.
I am grateful to hon. Members who attended and supported the debate. I am grateful to the Minister for her comments. It will probably not come as a surprise to her that I remain convinced—perhaps even more so—that universality is the easiest and simplest way to resolve the problems that the system has.
One way or another, my constituents still face so many anomalies, with the obvious one being family income versus that of the individual. There is also the fact that the rates have not changed in such a long period of time, so something needs to be reviewed. I look forward to becoming a firm pen friend of the Minister as we go further through these debates.
Question put and agreed to.
That this House has considered the High Income Child Benefit Charge.