Cystic Fibrosis: Living Costs

Lee Anderson Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon]

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

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

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

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

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

[Lee Anderson (Ashfield) (Con)]

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.

[Jim Shannon]

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.

[Lee Anderson]

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.

--- Later in debate ---

[Lee Anderson (Ashfield) (Con)]

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.