NHS: Pre-pandemic Facility Levels

Lord Austin of Dudley Excerpts

Tuesday 29th March 2022 Lords Chamber

[Lord Austin of Dudley (Non-Afl)]

My Lords, for many patients, the service before the pandemic was not nearly good enough, so our ambition ought to be much higher in the future. Why can we not reform the system by empowering patients with choice and competition? With modern IT services, why can GPs not be paid by appointment and why can patients who choose to not be able to ring round to find a GP who can treat them when and where they want, instead of being restricted to one practice?

[Lord Kamall (Con)]

The noble Lord makes some really good suggestions. On technology, one of the things we are looking at is why, in this day and age, when you can book appointments online for most other meetings, you cannot for GP practices. We want to make sure that people can book online, by telephone, and in advance—rather than having to phone at 8 am —and also let them choose between different places. We have to look at all these options, but, at the same time, technology is not enough: we also have to change the work processes to match the changes in technology.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 29th October 2019 Commons Chamber

[Caroline Dinenage]

The hon. Gentleman is right to raise this. As I said in my first answer, it is important that we can work collaboratively with organisations in the private sector and across the NHS to make sure that patients, wherever they are in the country, in urban or rural areas, can access the right care and support when they need it.

[Ian Austin (Dudley North) (Ind)]

If the Minister and other Members want to find out how to provide a phenomenal audiology service, they should come to Dudley and visit the clinical CCG buildings at Brierley Hill. It is an amazing service. When I was referred to them for a hearing aid, I could not believe the service. You ring up and say “When can I come in?”, and they say “When would you like to come in?” “Could I come in tomorrow?” “What time would you like to arrive?”—no waiting lists, an absolutely phenomenal service. I was worried—

[Mr Speaker]

I call the Minister.

[Ian Austin (Dudley North) (Ind)]

I was worried that I was getting special treatment because I was the MP, but I was not; it is just an absolutely fantastic service, and I want to commend the brilliant men and women who provide it. It would be great if the Minister came to see them.

[Caroline Dinenage]

I don’t know about you, Mr Speaker, but I could listen to the hon. Gentleman talk all day. He is absolutely right to commend the wonderful services provided by the team in Dudley. I would be more than happy to visit at any time.

Health Infrastructure Plan

Lord Austin of Dudley Excerpts

Monday 30th September 2019 Commons Chamber

[Edward Argar]

I am grateful to the hon. Lady for her comments and for their tone. She is absolutely right to highlight the importance of the workforce. Investment in new, first-class buildings and in equipment is vital because they are the tools that the amazing workforce need to do their job. She highlights a specific point about pensions, particularly consultants’ pensions. As she will be aware, we have been looking at this, and the Secretary of State has recently launched a consultation more broadly on proposals to address the challenges on pensions taxation.

[Ian Austin (Dudley North) (Ind)]

Thanks to the brilliant chief executive, Sarah-Jane Marsh, and the fantastic team of doctors and nurses and all the support staff, the most seriously ill children from Dudley and elsewhere in the west midlands receive the most fantastic care at Birmingham Children’s Hospital. But that care is provided in buildings that are 155 years old and, as I understand it, there is no possibility of them being replaced for at least another 15 years. I know that the Minister has had a lot of requests for meetings and visits today, but I would like to ask him to make the short trip to Birmingham and come with me to meet Sarah-Jane Marsh and the staff, see what they are doing and see how much better it could be if he managed to find a way of enabling the hospital to have the new facilities it needs.

[Edward Argar]

I am grateful to the hon. Gentleman. He is right to highlight the world-leading work of that hospital, carried out by Sarah-Jane Marsh and her team. He is right: it is a team effort. Every single person in the NHS family is vital to delivering those amazing outcomes and he is right to highlight that. I am very happy, as ever, to visit the great city of Birmingham, and even more so to do it in tandem with him.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Stephen Hammond]

The hon. Lady has invited me to meet her to discuss that funding. She will be pleased to hear that I will be delighted to do so.

[Ian Austin (Dudley North) (Ind)]

4. What steps he is taking to ensure that people with cystic fibrosis receive the latest treatment for that condition.

[James Frith (Bury North) (Lab)]

18. Whether he plans to hold a further meeting with Vertex Pharmaceuticals to ensure that new drugs to treat cystic fibrosis can be approved.

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

We want patients living with cystic fibrosis to get the best care possible. Progress in specialised treatment for patients with CF means that people are living healthier and longer lives, but I recognise that it is frustrating for everyone, in particular patients and their families, that a deal on Orkambi has not been reached. It is for Vertex and NHS England to enter negotiations. I urge Vertex to consider the latest offer from NHSE.

[Ian Austin]

I have heard from people in Dudley and across the country about the difference that those new treatments make, but patients have been waiting for three and a half years now. Some families are having to take extreme measures to secure access to the drugs. Will the Minister and the Secretary of State meet me, people with cystic fibrosis or their parents, and the Cystic Fibrosis Trust so that we can get the whole thing sorted out and the wait for the drugs is not drawn out any longer with another summer or year of impasse?

[Seema Kennedy]

I recognise and share the frustration of patients and their families. The situation has been going on for far too long. I again urge Vertex to accept the offer. The hon. Gentleman has been in touch about a meeting, and I understand that we have responded to say that we will give him a firm date shortly.

Cystic Fibrosis Drugs: Orkambi

Lord Austin of Dudley Excerpts

Monday 10th June 2019 Westminster Hall

[Ian Austin (Dudley North) (Ind)]

We have been campaigning on this issue for well over four years; I think this is the fifth or sixth debate we have had in this Chamber or the main Chamber. We have met two Prime Ministers, two Health Secretaries and several Health Ministers. We have a new Health Minister with us today. We welcome her to her place, and we hope she will be able to unlock this issue in a way that her predecessors did not. I cannot remember how many cross-party letters we have delivered to Downing Street. There have been countless meetings between MPs, Vertex and the Cystic Fibrosis Trust. However, four years after this drug was licensed, it still is not being made available to the people who need it.

Imagine how many people’s lungs have suffered irreparable damage in that period. Imagine how many people have seen not just the quality but the length of their life reduced over the past four years. I pay tribute to the brilliant people from the Cystic Fibrosis Trust who are with us today: David Ramsden, Nick Medhurst and the brilliant Lynsey Beswick, whom we heard about earlier. Most of all, I pay tribute to the army of parents and carers who work so hard on this issue all year round. We are in this room today because of the inspirational work they do. It is humbling and heartbreaking to meet them and listen to their stories.

I became involved in this issue because I met Carly Jeavons, whom the hon. Member for Sutton and Cheam (Paul Scully) spoke about. She is from Dudley, and she took part in a clinical trial for Orkambi. Before being put on that trial, she had to choose between leaving work, with all the financial hardship that would cause, and struggling on in work with her health getting worse. She had to take 90 tablets and do two hours of physiotherapy a day. Her lung function was 44%. She had to spend two weeks in hospital every three months. That is not an unusual story, by the way, for people with cystic fibrosis.

Carly told me:

“Orkambi has changed my life. I quickly became well enough to start to live a more normal life again as a working mum. My health has remained stable…hospital visits have massively reduced,”

and unplanned admissions are now non-existent. Since she started having Orkambi, she has been able to go on holiday for the first time, she has got married, she has started a family and she has started a business. She makes a much bigger contribution to the economy. People talk about the cost of providing these drugs; what about the contribution that people who are given Orkambi can make to the country and the economy? Let us think about that.

I did not really understand the impact that having a condition such as cystic fibrosis has on the rest of someone’s life. I mentioned Lynsey a moment ago. I hope she does not mind me telling everyone this. She is in her 30s, and she told me that, at a time when her friends are getting married, planning families, developing their careers, starting businesses and making long-term plans, people such as her are deterred from doing those things. It was heartbreaking to listen to her tell me that, so I cannot imagine what it is like for her.

I hope people forgive me for being blunt, but people in Lynsey’s position are just not able to plan for their future in the same way because they do not know how long they have to live. Every day that people who could be helped by Orkambi are denied access to it is another day for which their lungs suffer irreparable damage. It is not like breaking a leg—a leg can be fixed and become normal again, but someone’s lungs will not recover.

I understand that Vertex wants to make a profit. Of course it does, and of course it needs to be able to fund future drug developments. But surely it would make sense to sell a lot of a drug at a slightly lower price than to sell nothing at a really high price. I am not an expert on pharmaceutical company economics, but that seems to me to be worth looking at.

What assessment has the Minister made of the case for Crown use licensing, where the Government take control of the situation and ensure that these drugs are provided? What assessment has she made of the case for the Government providing the cheaper drugs that are available elsewhere? It is a disgrace that families have to buy them from Argentina.

The Minister is new to the Department, and we really hope she will work night and day to get this sorted out. She should get NHS England, NICE and Vertex in a room and not let them out until they have come to an agreement. That is what we need to happen. Will she also meet the cross-party group of MPs who have been working on this issue, and the parents and the Cystic Fibrosis Trust, so we can discuss it in more detail than we are able to this afternoon?

The situation is urgent. The system has not worked. People with cystic fibrosis have been put in an appalling position. This really does need to be sorted out now.

NICE Appraisals: Rare Diseases Treatments

Lord Austin of Dudley Excerpts

Thursday 21st March 2019 Commons Chamber

[Ian Austin (Dudley North) (Ind)]

I thank the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), and the Backbench Business Committee, for arranging this debate. I am here to speak up for people in Dudley with cystic fibrosis, phenylketonuria—or PKU—and spinal muscular atrophy.

I have been campaigning with others to make Orkambi and other new treatments available for people with cystic fibrosis because I was contacted by Carly Jeavons from Dudley, who took part in the clinical trial for Orkambi, and by Samantha Carrier, whose baby daughter Daisy was diagnosed shortly after birth. Samantha has given up her career and now devotes her life to campaigning for access for these life-changing drugs. While listening to this debate, I have been receiving emails, texts and other messages from people around the country—heroic parents of children with cystic fibrosis who work so hard and campaign tirelessly for the treatments that their children need. I know that the Minister has met some of these parents, and I hope he will have some new answers for them today, because they have worked so hard to raise these issues, which really do need to be sorted out.

Before the clinical trial, Carly Jeavons had to take 90 tablets and do two hours of physiotherapy a day. She had a lung function of around 44% and spent two weeks in hospital every three months. She had to choose between the financial hardship of leaving work or her health being made worse as she struggled on at work. She told me:

“Orkambi has changed my life. My health has remained stable. I only need one or two courses of IV’s per year instead of the four previously, hospital visits have been massively reduced and admissions are non-existent.”

Since having Orkambi, she has been able to go on holiday abroad for the first time with her family, and she has got married. She has also started a business and is employing people, so she is making a much bigger contribution to the economy. The Government need to look at the contribution that people who get these drugs can make to the economy, not just at the costs of providing the drugs. I believe that NHS England and NICE are with Vertex this afternoon for yet another meeting about whether these cystic fibrosis drugs can be provided. But this comes three years after NICE appraised Orkambi. I really hope that the Minister will explain how this situation can be resolved and how other situations like it can be avoided, so that patients can get can get access to these drugs.

Let me turn to the issue of treatments for people with PKU. Some of the people who have been leading this campaign are sitting in the Public Gallery, watching this debate. Again, I hope that the Minister will have some good news for them today. As we have heard, PKU is a rare metabolic disease that leaves people unable to metabolise protein properly, leading to a toxic build-up of material that can cause irreversible brain damage. The only existing treatment is a strict diet of extremely low protein, meaning that almost all normal foods are off limits. The diet is lifelong, and sufferers find it stressful and difficult to cope with. I had never heard about this condition until a woman in Dudley called Kirsty Thornton got in touch with me. Since then, I have met the campaigners and taken part in a PKU diet challenge. I have also joined the cross-party parliamentary campaign led by the hon. Member for Blaydon to ensure that people with PKU get access to the treatments and supplements they need.

It is heartbreaking for parents of young kids with PKU who do not understand why they cannot go to their friends’ birthday parties in case they eat the wrong foods that will make them tired, sick and ill for the rest of the day, or for longer. Students say how difficult it is when their friends are going on nights out, or they move to university and the people they share a flat with are ordering in pizzas and so on, or they cannot go out on a date because they do not know what they are going to be able to eat or not eat. This must be really tough for young people.

[Kerry McCarthy]

My hon. Friend will probably be aware that the Government are looking at a new food strategy, and one of the things under consideration is better food labelling. A lot of people think that those who make certain dietary choices do it almost to be trendy, or just because it is the fashionable thing to do, but there are people whose lives are at stake if they cannot get the information on food that they need. Food manufacturers and anyone else involved in the provision of food need to be alert to the fact that it is important that people know what they are going to be eating.

[Ian Austin]

That is a really important point. The PKU campaigners have explained to me that on some occasions when manufacturers have changed the ingredients in food or drinks, that has had a terrible impact because people with PKU have not necessarily known about it, so they have continued to drink or eat things that they have consumed without any problems in the past, but because the ingredients have changed, it has caused them a big problem.

For many people with PKU, taking Kuvan considerably increases the amount of protein that they can safely eat. We are therefore urging the Government, the NHS and BioMarin, which manufactures these supplements, to agree a deal so that people with PKU can enjoy a normal healthy life. I spoke to the National Society for Phenylketonuria this morning, and it told me that the whole PKU community are demoralised. They say that they are working hard but feel that not much progress is being made. What is the Minister going to do today to give these people, some of whom are in the Public Gallery, and others who are sitting at home with their kids watching this debate, to give them hope of this situation being resolved?

My next point is about Spinraza treatment for people with spinal muscular atrophy, or SMA, which affects an estimated 1,300 people across the UK. It can cause irreversible loss of a child’s ability to crawl, walk, breathe and swallow. In the most severe cases, it can cause death. Spinraza is the first possible treatment for those who have SMA types 1, 2 and 3. It can slow its progression and prolong life. From April, this treatment is going to be routinely available in Scotland, and it is already available in 24 other countries in Europe, yet it is still stuck in the NICE process for England, Wales and Northern Ireland.

That is why, in the end, the purpose of this debate is to ask the Government to look carefully at the way that NICE works. New drugs are being developed, and technological changes are happening, so rapidly that the Minister needs to be able to tell us how the way drugs are assessed and licensed, and then approved, will work in future. How is he going to ensure that these ground-breaking drugs are made available to the people who need them, when they need them? In 2016, NICE was not able to recommend the use of Orkambi because of uncertainty around its long-term value, impact and cost-effectiveness. But this drug is available in the USA, across Europe, and, more recently, in Scotland, so when do the Government think patients in England are going to get it? This is really urgent. The system has not worked and patients are being let down.

On PKU, NICE decided to start an appraisal of Kuvan in 2018, but this has since been suspended. NICE is currently reconsidering which appraisal process to use to access Kuvan, and the NHS is considering whether to fund an interim policy for the use of the drug. But, again, this is not enough, and not quick enough. The NICE process sees PKU as rare, but not rare enough. As we have heard, the majority of PKU treatments are assessed by the STA process, which is designed for non-rare treatments. NICE’s approach evaluates the lifelong costs of treatment, meaning that the cost thresholds and the approach to evidence are all designed for more common diseases than PKU. SMA sufferers are waiting for NICE, NHS England and Biogen, which manufactures Spinraza, to come to a deal. I hope we will hear better news on all those things from the Government than we have in the past.

It is my job to listen to people in Dudley who are living with cystic fibrosis, PKU, SMA and other rare diseases, to come down to London and speak up for them in Parliament and to demand, as we are doing this afternoon, that the Government ensure that they get access to the treatment they need and deserve.

Orkambi

Lord Austin of Dudley Excerpts

Monday 4th February 2019 Commons Chamber

[Mr Ivan Lewis (Bury South) (Ind)]

rose—

[Ian Austin (Dudley North) (Lab)]

rose—

[Steve Brine]

I will give way once—and that is it—to the hon. Gentleman who rose first.

[Steve Brine]

Okay, the hon. Gentleman has got his press release with his intervention. Perhaps I should go back on what I said at the start. All he has done is to take away time, on what is a very complex issue, from my trying to set out a response to my hon. Friend’s Adjournment debate.

My hon. Friend has called on the Government to consider making use of the legal provision in UK patent law of Crown use licensing to break, as he rightly puts it, the current “deadlock”. As the hon. Member for Bury South (Mr Lewis) said, in a reasonable part of his intervention, it is a deadlock and it has been going on for some time. I commend my hon. Friend’s efforts in raising this. Indeed, it is right that we consider every possibility. Every effort must be made to ensure that effective medicines are made widely available to cystic fibrosis patients. There is no doubt and no debate about that.

I can assure my hon. Friend that we, too, have considered this option. Indeed, I have received initial advice on Crown use licensing. While the use of these mechanisms is not our preference, we are looking at all options. Crown use licensing is complicated, and it would not represent a quick solution to ensuring patient access to Orkambi. My hon. Friend the Member for Newton Abbot (Anne Marie Morris) mentioned that in her intervention and, sadly, she is right.

The UK is one of a limited number of countries that actively protects the role of intellectual property in medicines development in international forums. We believe, however, that there is a balance to be struck between providing incentives to create and commercialise new medicines and ensuring that they remain affordable to the taxpayer—our constituents.

The 2019 voluntary scheme for branded medicines pricing and access, alongside the statutory scheme for branded medicines, are two mechanisms that are in place for ensuring branded medicines are affordable to the NHS. The 2019 scheme provides for flexible commercial arrangements between companies and NHS England—in other words, the customer in this scenario.

In theory, Crown use licensing could be utilised with respect to Orkambi. However, in the past Crown use has only really been intended or designed to deal with emergencies, where a particular patented product is not available in the UK at all. Crown use has not historically been intended to circumvent commercial agreements or to create a mechanism for the production of medicines at a lower price.

The relevant legislation on Crown use states that compensation would need to be provided to the original patent holder—in this case, Vertex, and that would stick in the throat of many of us—which would need to take into account any loss of profit from not being awarded a contract to supply the patented medicine. Unless an agreement could be reached with Vertex, it would be for a court to decide on an amount in this instance. This would of course need to be paid from the public purse. If a Crown use licence were issued, then there would be a subsequent, critical question about how the medicine would be produced and authorised as the usual licensing requirements would apply, with approval required by the Medicines and Healthcare Products Regulatory Agency.

Vertex has protections in the form of both data and marketing exclusivity for Orkambi, and it will continue to have these for a number of years. As such, unless another manufacturer conducted its own clinical trials, there are no realistic alternatives at this time to produce it and the NHS does not hold such a capacity. Using this route, it could take several—many—years before the drug was available on the market, and it would, in all likelihood, be very expensive for another manufacturer. The total length of time and cost of manufacturing and licensing—plus the compensation to the patent holder and a potential appeals process through the courts, which seems inevitable everywhere we turn these days—could be potentially significant.

We also do not know what impact Crown use would have on the other medicines that Vertex supplies to the NHS or the pipeline of products that it is developing. We should remember—and my hon. Friend reminded us of this in his opening speech—that around 50% of people with CF would benefit from Orkambi; in other words, 50% would not.

Crown use could have the effect of putting patients at a disadvantage, jeopardising access to future medicines and potentially setting a precedent of issuing further licences at very high cost.

[Ian Austin]

Will the Minister give way?

[Steve Brine]

Just because I cannot resist the hon. Gentleman, I will give way to him.

[Ian Austin]

I am grateful to the Minister for giving way. He is setting out all the arguments against Crown use licensing. I agree with the point that he has made in the past—that Vertex needs to show flexibility on this—but I think we all think that the Government also need to show flexibility and to think carefully about whether the NICE guidelines work when evaluating these new, precision medicines. What we would all like to hear from him tonight is what he proposes to do, and what the Government are going to do, to break this deadlock and bring these negotiations to a conclusion.

[Steve Brine]

In response to the hon. Gentleman and to one of the other interventions about compromise and meeting in the middle—there is lots of talk about compromise at the moment—I suggest that the £500 million offer is a pretty good first step from the Government. I suggest that that is a pretty good attempt to meet in the middle. That is our constituents’ money.

Oral Answers to Questions

Lord Austin of Dudley Excerpts

Tuesday 24th July 2018 Commons Chamber

[Matt Hancock]

There are huge opportunities for AI to improve patient outcomes and to make life easier for staff. In answer to the second part of my hon. Friend’s question, it is all about getting interoperable data rules and standards in place so that different systems can talk to each other in a secure, safe and innovative way.

[Ian Austin (Dudley North) (Lab)]

rose—

[Mr Speaker]

When we were at university together there was nothing, in my judgment, about the hon. Gentleman’s intelligence that was artificial.

[Ian Austin]

Thank you, Mr Speaker. It is not just artificial intelligence. The development of other life sciences and new technologies can have a massive effect on improving people’s healthcare, such as the development of treatments like Orkambi for people with cystic fibrosis. Will the Secretary of State make it an important priority to cut through the impasse between NHS England and the manufacturer, Vertex, so that people with cystic fibrosis can finally get access to the drugs they need?

Access to Orkambi

Lord Austin of Dudley Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

I am going to make progress, if I may, but I will perhaps give way once more later on.

[Ian Austin (Dudley North) (Lab)]

Will my hon. Friend give way now, before he continues?

[Mr Lewis]

I will—my hon. Friend certainly deserves it.

[Ian Austin]

I am very grateful. This is a really frustrating process, and the Government have to find a way of bringing it to a conclusion. I agree that NHS England and Vertex have to get back into negotiations, which should not stop until this is resolved. Does my hon. Friend agree that it might be an idea for the Secretary of State to get Sir Simon Stevens and Jeff Leiden, the chief executive of Vertex, in a room—

[Sir Mike Penning]

And lock the door.

[Ian Austin]

The right hon. Gentleman could lock the door, but first he has to get them in there so that negotiations resume and are not concluded until they resolve this issue, because it really does have to be sorted out.

On that point, does my hon. Friend agree that it was worrying to read the word “final” in NHS England’s response to Vertex yesterday? It cannot be final. I really hope the Minister is listening to this. [Interruption.] The word “final” was in there. [Interruption.] Well, he is the Minister. The word “final” cannot be used until it is finally resolved. That is when it will be final.

[Mr Lewis]

I agree entirely with my hon. Friend, and I will develop his argument as I continue my speech.

A quote from Emma, Alex’s mum, sums up many of the frustrations of the constituents represented here today. She says, very movingly:

“Alex has a real love for life and all she wants to do is live a long and happy live without having to fight to breathe.”

That powerful statement says it all.

Since March, when we last debated this issue, NHS England and Vertex have met on four occasions. I welcome the fact that, during those negotiations, NHS England accepted the principle of a funding agreement that supports a portfolio approach to current and future drugs. That is undoubtedly a step forward and a positive response to the contributions parliamentarians made in the initial debate, but it is clear that these negotiations have not produced an agreement that is acceptable to both parties. Indeed, the public recrimination suggests that the negotiations had all but broken down. It remains to be seen whether NHS England’s written offer, made on the eve of this debate, is a basis for progress, but the early indications are not encouraging.

It would be inappropriate for anyone to make judgments about the validity of either party’s case without having full access to the information, which remains confidential for reasons of commercial sensitivity. I know I speak for all parliamentarians when I express concern about the fact that, as my hon. Friend the Member for Dudley North said, NHS England described its offer as “final”. It could lead to a stalemate that once again lets down patients and their families. To be clear, I respect the need for an objective process that delivers appropriate medication and value for money for the taxpayer. If NICE did not exist, it would have to be invented, but—this point has been made time and again tonight—the shortcomings of the current assessment processes are well documented. That is why NHS England’s involvement in this instance is to be welcomed.

Equally, Vertex has the right to seek financial remuneration at a level that maintains its viability and supports the development of the company. Sadly, I am unconvinced that more of the same will lead to an agreement that will enable Orkambi and successor drugs to be made available to people with cystic fibrosis. Consequently—my hon. Friend the Member for Bury North suggested this—I urge the Secretary of State for Health and Social Care to facilitate an urgent meeting with the chief executive officers of NHS England and Vertex. In that meeting, they should seek to resolve any outstanding differences, and agree a rapid timescale for the roll-out of Orkambi across the country and an approach for other relevant drugs. People with cystic fibrosis have been waiting far too long.

Phenylketonuria: Treatment and Support

Lord Austin of Dudley Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

It is a pleasure to serve under your chairmanship in this important debate, Mr Robertson. It is just over 12 months since I was elected Member of Parliament for Blaydon, and only a few days less than that since I first heard of phenylketonuria—commonly known as PKU, which is easier to pronounce. One of my constituents, Barbara McGovern, had called at my office and spoken to a member of my staff about whether I would attend an event in Westminster on 28 June. Barbara’s son Archie has PKU, and she described his condition and some of the restrictions that he has to cope with every day. Her explanation of what PKU means, and her determination to get the best for her son, impressed my staff, who made sure that I attended the reception to learn more about the condition. Barbara and her husband David, and Archie, have travelled from the north-east to listen to the debate, and I welcome them.

Since that first encounter, I have been lucky enough to be introduced to the officers of the National Society for Phenylketonuria, and have had the chance to work with them and its other members to raise the profile of PKU, get people to understand it and its effects, and press for access to treatment and support. I will give a few of the many names that I could mention. Kate Learoyd and Caroline Graham both have children with PKU, and they have dedicated much of their time to talking to Members about the condition and the need for action for people who live with PKU. Professor Anita MacDonald OBE, of Birmingham Children’s Hospital, also does much to raise awareness of the condition and goes above and beyond in advising families affected by PKU on diet.

[Ian Austin (Dudley North) (Lab)]

I commend my hon. Friend on securing the debate and on her leadership of the all-party parliamentary group on phenylketonuria. There are lots of health-related campaigns for more resources, new treatments and drugs. Many have plenty of resources and are funded by major pharmaceutical companies, which hire expensive lobbyists and all the rest of it. The remarkable thing about Kate Learoyd and Caroline Graham is that they are parents of children with the condition, and their campaign is entirely voluntary. They have to fit it around their family and other commitments, which makes their work all the more remarkable.

--- Later in debate ---

[Ian Austin (Dudley North) (Lab)]

Like other hon. Members, I had never heard of this condition until I was contacted by a constituent, Kirsty Thornton from Dudley. She is the reason why I am taking part in the debate. To hear how the condition had affected her was very moving, and as a result of meeting her, I met Kate Learoyd and Caroline Graham, to whom I paid tribute earlier. I want to mention one other person at the outset. Professor Anita MacDonald OBE, who is with us today, is the brilliant head of a dedicated team of dieticians caring for children with rare inherited metabolic disorders at the Birmingham Children’s Hospital. I want to tell the Minister that Kate Learoyd, Caroline Graham and Anita MacDonald are here today. I hope that, at the conclusion of the debate, he might find a moment to say hello to them and arrange to meet them properly and at length subsequently.

It is deeply moving to hear how families manage this condition, particularly for toddlers, who cannot understand why they are not allowed to eat the same food as their siblings or have the same food as their friends at a birthday party. One parent has said of their child:

“She resents the fact that her family can eat normally and she can’t. At mealtimes, she will go into a depression. Often she will ask to eat the crumbs of normal bread off our plates or we catch her licking our plates. It is awful to see.”

It is very distressing to hear how a simple mistake can have huge ramifications, affecting a young person’s concentration and even their mental health and then their ability to study or to work. One young person said:

“When I have high phe levels I slur my words, struggle with balance, lose my train of thought and stop speaking...I am hit with such fatigue that I lose sight of what it is like to feel awake.”

I would therefore like to encourage the Minister and the Opposition spokesperson, my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson), to join us on the PKU diet challenge this Thursday—indeed, I hope that as many hon. Members as possible will take part—to highlight the difficulty of adhering to the strict rules that people with this condition have to follow. We have to do this properly and stick to the rules. We have to check all the ingredients, as we heard earlier, weigh foods properly and keep a tally throughout the day of the amount of protein that we have eaten. Most of all, as we have just heard, we have to remember that we are doing it only for a day and not a lifetime, like the constituents on whose behalf we are speaking today.

I want to ask the Minister three other questions before I conclude. First, as he has heard, we are calling for an examination of the failure to use Kuvan in the UK. That treatment can transform people’s lives. It has been licensed for almost 10 years and is used in lots of other countries in the EU. We would like the Minister to take personal charge of this matter and work out what can be done to sort out provision of it in the UK, too.

Secondly—we have raised this issue in respect of other conditions and other drugs—will he look at the appraisal rules for new treatments for PKU? This is a very rare disease, but it has a wide impact outside direct health costs. It is not a criticism of NICE or the Minister or Government, but the fact is that these are conditions and treatments that NICE was not really designed to deal with. How can the appraisal system be altered to work for conditions such as this?

Finally, will the Minister work with the NSPKU to review the provision of treatment to patients, including basic dietary treatments? How can that be made consistent across the country? That is a very urgent thing that it should be possible to sort out without too much difficulty.