Auditory Verbal Therapy

James Frith Excerpts

Tuesday 21st January 2025 Westminster Hall

[Mr James Frith (Bury North) (Lab)]

It is pleasure to speak under your chairmanship, Mr Western. I congratulate my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) on securing this important debate and on her contribution to ensuring that this profound therapy is better heard, better known and more available to choose for a great many in our society.

When there is so much to resolve, so much to fix and sort out, it feels like smaller causes struggle to be heard or seen. Our politics seems too busy to care about even more causes; it is all just too much. Alternatively, it can be said that the last Parliament did good things for the deaf community, so to expect new money for new causes is a stretch too far, naive even. We must believe in better. Each Parliament has the opportunity to help the underserved, and there are always issues that, with the right political heat and weight, can be transformed. Such issues have long been on the roll of Government successes, whatever the political weather. Think of the long-standing injustices, new medicines on the NHS, or social equalities we have addressed.

The missions of this Government delivered their enormous parliamentary majority and a mandate to renew, reform and transform. Auditory verbal therapy takes the Government’s vital missions for health, for children, for the smashing of barriers to opportunity, and for growth, and it brings them to life. This cause gives the missions cause to blossom. There may not be a better example of a cause that, for such a fraction of an investment, can be transformational.

I know what we are asking for will not be green-lit today, but I know what we need. Former Health Secretaries I have met have spoken of the “whiteboard moment”, when we get the issue on to the whiteboard. That is the goal. It is the moment when the Minister asks their civil service teams to make something possible—to draft a plan to take us from where we are to where we need to be. It is a pilot, a tester, a starter for 10, where the Government do not just take our word for it, but see for themselves.

Should there be concern among our deaf community, let me say that this is not about undermining the celebrated protected status of British Sign Language. We celebrate BSL as a language—a unique cultural identity—and the last Parliament’s recognition of BSL in law was a landmark achievement. The argument for auditory verbal therapy is an argument for choice—choice for the child, their family and their future—and ensuring that families have the knowledge and support to choose the best path for them. It is not about competing choices, but having access to all of them. The demand is that these families’ cause is heard, and the majority of the country agrees. In a recent YouGov poll, 85% of UK adults believed that auditory verbal therapy should be available to all children via publicly funded services such as the NHS.

The first years of a child’s life are critical. It is when their brains are most receptive to language and communication. For deaf children, early intervention is essential. Auditory verbal therapy enables deaf children to develop listening and spoken language skills and equips them to thrive alongside their hearing peers. With AVT, 97% of deaf children without additional needs achieve age-appropriate spoken language within two years. That is the transformation we seek. It is not a big ask, but it has giant implications for the impact that AVT can have if we can reach that whiteboard moment and have civil service teams working with experts to bring this therapy into NHS early years programmes. It is preventive healthcare at its best: cost-effective, compassionate and life-changing.

For someone who learns that their child is deaf, navigating this new world is disorientating and complex, and they will feel unsure. It is also the moment where we should ensure that parents learn that there is a therapy that could help their child to communicate on a par with their hearing peers. The option of AVT should be as freely considered as learning to sign, and traditional or developing means.

Withholding this therapy after people have learned of its existence cannot remain the position, yet learning of AVT only to be told that it is unavailable, unaffordable or simply not an option where someone lives is the reality for far too many families. With only 33 certified auditory verbal therapists across the UK, access to AVT is exclusive and rare. Most families will never hear of it. By removing the barriers, we can give parents and their children the opportunity to decide for themselves. That means training more therapists—supported by Government bursaries—to meet growing demand, building regional hubs, expanding telepractice services so that no family is left behind, and raising public awareness to ensure that families know that AVT is an option.

If the heart of the argument does not move us, the head can. This therapy means economic growth and a sound investment in families’ futures and ours. This cause is transformational for not just them but the economy. For £2 million annually—a fraction, or a rounding error, when it comes to the NHS budget—we could ensure that thousands of deaf children access AVT. According to independent economic analysis, this investment would unlock £11.7 billion in benefits over 50 years, and here is how. We would reduce education costs, as early intervention means less reliance on one-to-one support, saving £3.4 billion. We would increase employment, with confident, independent deaf adults contributing £1 billion to economy. And we would improve quality of life, with thriving, independent individuals generate £4 billion in societal benefits. Without early intervention, the costs are far greater. Delayed support leads to unfulfilled promise or potential, higher unemployment, mental health challenges and long-term reliance on public services.

The new Government have wasted no time identifying waste to be cut from their spending. The Cabinet Office has pledged to reduce the £7 billion per year spent on consultants. Official analysis found that total spending on consultancy in 2022-23 was £1.2 billion, with the Department of Health and Social Care among the highest spenders, at £281 million. I share this Government’s instincts: the money saved must now transform the lives of those accessing AVT. Does the Minister agree?

For just £2 million a year, we can train more specialists in order to remove the barriers to opportunity, expand access through the NHS and ensure that every family makes informed decisions. We are not asking for those decisions today, but for a commitment to start this journey and to draft a plan that takes us from this underserved system to one that provides choice and opportunity for every deaf child and their family. With parents given every option to choose for them, their children are given the best chance to thrive. When all deaf children thrive, our society is stronger, more inclusive and more prosperous. This underserved issue can benefit from the Government’s mission to transform. As the campaign says, “Hear Us Now.”

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[The Minister for Care (Stephen Kinnock)]

It is a great pleasure to serve under your chairship, Mr Western. I thank my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) for securing this vitally important debate, and for her powerful and moving contribution to our discussion.

I would also like to break with protocol and welcome Sam to Parliament today. He is clearly a remarkable young man, and an inspiration to us all—thank you for being here, Sam. Like the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), I thank hon. Members for their excellent contributions today. We have had a range of contributions, including from the shadow Minister, and from the hon. Members for North Shropshire (Helen Morgan) and for Strangford (Jim Shannon), and my hon. Friends the Members for Bury North (Mr Frith), for Bolton North East (Kirith Entwistle), for Derby South (Baggy Shanker) and for Bolton South and Walkden (Yasmin Qureshi). I think that may be all, but huge apologies if I have missed anybody. All their contributions were excellent and very well put.

My hon. Friend the Member for Washington and Gateshead South has done so much work to champion the interests of children with special educational needs and disabilities, including non-hearing children. I know that she also has an excellent partnership with Auditory Verbal UK, which I welcome to Parliament today. I would, of course, be happy to meet its representatives to follow up on all the points made in this debate.

This Government are committed to raising the healthiest generation of children ever. We will deliver on this ambition through the health and opportunity missions, and through the Government’s child poverty strategy. This is not about silos, with each Department delivering one part of a puzzle that does not fit together properly; this is about systemic, holistic change, and ensuring that we join up analysis, expertise and delivery across Government. Our mission-driven Government will drive long-lasting and sustainable change for children now and in the future. We will break down barriers to opportunity and ensure that every child has the best start in life. This includes all children and young people with special educational needs and disabilities, including non-hearing children.

We know that developing early communication skills is a key foundation for life, and there are serious knock-on consequences when that development is delayed. That is why we are committed to improving access to early interventions so that every child can find their voice. With the right support, children with hearing loss can develop effective communication skills, live fulfilling lives and enjoy the same opportunities as everyone else. The Government recognise the importance of the earliest days of an infant’s life. There is strong evidence that the 1,001 days from conception to the age of two set the foundations for our cognitive, emotional and physical development. That is why we are giving a £126 million boost for families to give every child the best start in life.

Thousands of families across England will be able to access family hubs, which will act as a one-stop shop for help with infant feeding advice, parenting classes and perinatal mental health support, among other things. Figures from the National Deaf Children’s Society show that there were more than 45,000 deaf children and young people in the UK in 2023. Between one and two babies in every 1,000 are born with permanent hearing loss in one or both ears. This number increases to about one in every 100 for babies who have spent more than 48 hours in intensive care. Early and effective support is crucial for these children and their families. Permanent hearing loss can significantly affect a baby’s development, so early and effective support is crucial for these children and their families.

It is vital that we intervene at birth. The NHS newborn hearing screening programme—the NHSP—aims to find babies who have hearing loss as early as possible so that the right support and advice can be offered right from the start. As we all know, language is linked to social, emotional and learning outcomes. From birth through to childhood, children and young people with hearing loss might need a range of therapies, such as speech, language and auditory verbal therapy. However, as we have heard today, those children are not always receiving the support that they need.

We recognise the important role of auditory verbal therapy as one of the therapies that can be useful for children with hearing loss. NHS audiology services, including the provision of therapies for children with hearing loss, are locally commissioned, and responsibility for meeting the needs of children with hearing loss lies with local NHS commissioners, because local systems are best placed to meet the needs of their own communities.

After 14 years of Tory neglect, incompetence and austerity, our NHS and care service are on their knees, but this Government are committed to properly funding the NHS, and we recently provided a £26 billion boost for health and social care in the autumn Budget. NHS England is responsible for determining allocations of financial resources. Each ICB will then commission the services they need for their local area, taking into account their annual budget, planning guidance and the wider needs of the population they cover. NHS England is supporting integrated care boards to make informed decisions about the provision of audiology services so they can provide consistent, high-quality and integrated care to non-hearing children.

In July 2016, NHS England published “Commissioning Services for People with Hearing Loss: A framework for clinical commissioning groups”. The framework supports NHS ICBs to make informed decisions to address inequalities in access and outcomes between hearing services.

[Mr Frith]

Does the Minister agree that, for all the good intentions of ICBs, our healthcare system is atomised, but that if they were to take instruction from guidance provided nationally, the pillar-to-post experience of a lot of families seeking auditory verbal therapy would end? Will he commit to updating the nine-year-old guidance to ICBs, or at least acknowledge that it needs updating, with a national pilot that proves the efficacy of AVT for families seeking that intervention?

[Stephen Kinnock]

My hon. Friend will know that one of the constant challenges in the system is getting the right balance between empowering those operating at the coalface—those who are close to the communities and know them best—to ensure they are delivering the best possible services, and ensuring consistency and coherence, both strategic and operational, across the entire system. It is safe to say that we are not always getting that balance right. One of the key objectives of the 10-year planning process that we are going through will be to address the so-called postcode lottery—variation between regions—across the whole range of health and care. Without that cross-cutting strategic look at the system, it will not be possible to get the balance right. I absolutely take the point, but one thing I will say is that we are crystal clear when we issue guidance to ICBs that they must take that guidance into account, and their performance is monitored on that basis.

NHS Backlog

James Frith Excerpts

Monday 6th January 2025 Commons Chamber

[Mr James Frith (Bury North) (Lab)]

A happy new year to you, Madam Deputy Speaker. If the House will indulge me briefly, may I begin by wishing my grandmother well? She had a fall last night and broke two of her ribs. She is doing okay, but at 98 she may need a little longer in hospital that I, her eldest grandson, might have needed—although that is not a given.

Tackling deep-rooted health inequalities in Bury North is my priority for this Parliament. The difference there of a mile between postcodes can mean a seven-year difference in life expectancy for men and a five-year difference for women. I wish to reach across the aisle and associate myself with the remarks of the good doctor, the hon. Member for Runnymede and Weybridge (Dr Spencer)—who spoke very well in the debate on assisted dying—on what I would call the democratic deficit for MPs in relation to ICBs and acting on health inequalities at a local level, well beyond what we might achieve through parliamentary questions or writing to and meeting Ministers. I am pleased that the Government will not allow the dire record and wasted years of Tory government to prevent Labour from doing what we do best in power: fixing and fast-forwarding the NHS.

In Bury North, a constituent I will call Jackie has rheumatoid arthritis. After a severe, debilitating flare-up she waited two days for a GP to call back. She spent eight hours waiting in two different hospitals before being admitted overnight, only to be discharged the next day and told to go to a third hospital, where no rheumatologists were in place. Her emergency appointment was 11 days later. She was left in tears and unable to speak, so her husband had to advocate for her to get the appointment she desperately needed.

NHS backlogs take a personal and punishing toll on people’s lives, including through lost income from lost jobs or, worse still, lost years with loved ones from late or missed cancer diagnoses. Today’s commitment from the Labour Government that 92% of NHS patients will wait no longer than 18 weeks for treatment by the end of this Parliament is an enormous, transformative ambition. If that figure, which is currently at 59%, improves to 65% by March next year, that will give comfort to those who rightly expect to feel the change that Labour will bring on their own doorsteps.

I also welcome the aim of ensuring that community diagnostic centres can operate 12 hours a day, seven days a week. Thanks to the Chancellor’s Budget, local doctors will be incentivised to consult specialists to explore alternatives to hospital treatment.

In Bury, where Fairfield general hospital has the second highest average wait times for elective surgery in the country, the new national standards for elective care are welcome. Incentives for trusts that improve wait times are welcome, but does the Minister agree that the focus should be on average wait times—affecting the maximum number of patients—rather than rewarding trusts that reduce the longest possible wait time for fewer patients? I understand the capacity demands that will come with that, but it is a hugely important distinction. Although reducing the longest wait times is important, focusing on that metric alone, and rewarding trusts for it, risks leaving many patients with painful and debilitating conditions and trusts ducking their responsibilities. This Government have made it clear that we will address that on our watch.

Access to Primary Healthcare

James Frith Excerpts

Wednesday 16th October 2024 Commons Chamber

[Mr James Frith (Bury North) (Lab)]

Some of us newly elected or returning MPs have only just got our accommodation and offices sorted out, so I commend the Government on the speed with which they have got surgeons back to work, resolved the doctors’ strike, reviewed and assessed the crisis and made announcements for a decade of national renewal. They have also affirmed the view that our NHS should be treated not as a shrine or beyond question, but as something that must be returned to deep service to our country and play its part as a health and economic public service.

Lord Darzi’s review for the Government highlights the critical issues in the NHS and the state we are in, and particularly the underfunding of primary care. It has been neglected in favour of a creeping trend towards hospital services, under the failed principle of leaving it late—the crisis mode setting that applied across our public services under the last Government. By design, people ended up in A&E because of a failure to plan for GP and primary care, with 16% fewer GPs than other high-income countries. The review also points out significant health inequalities, with deprived areas historically receiving insufficient resources. In Bury North, child poverty is up to 43%, densely concentrated in just three of our nine wards. Life expectancy for those living in Bury North ranges enormously: the difference in life expectancy between North Manor and East Ward is five years for women and nearly seven years for men.

[Dr Beccy Cooper (Worthing West) (Lab)]

Public health interventions cost only a quarter of the amount that clinical interventions do to add an extra year to life expectancy, so does my hon. Friend agree that the reduction of the public health grant was an appalling false economy and should be restored, as soon as finances allow, to at least 2015-16 levels of funding?

[Mr Frith]

My colleague makes a valid point; I defer to her knowledge of the public health system.

The distance of a mile or so has a huge impact for the men and women living in east Bury. I urge those carrying out the Government review to see how, in constituencies like mine, specific interventions could address those deep health inequalities and identify the work we need to do to resolve that impoverishment in densely populated areas and that ingrained health inequality. I urge the Government also to adopt multidisciplinary care models and shift care closer to home to address these issues—a sentiment that I know Ministers share.

Taking a wider view, the funding formulas are outdated and an update is long overdue. That update should take into account the weight of funding pressures for areas such as mine, with a mix of economic and demographic inequality, including the fact that so much of the revenue that our local authority raises is immediately swallowed up by adult care and the disastrous special educational needs system—a symptom of the crisis mode mentality under the previous Government.

The Government have wasted no time, investing £82 million to recruit a thousand newly qualified GPs and addressing the dental care crisis with 700,000 urgent dental appointments. The Government also aim to expand the role of pharmacies—a measure I hugely welcome—to reduce the burden on our GP and hospital care, and crucially also for those living with chronic illness or conditions. A boost to the engagement patients can have with health decision makers via the NHS app and an improved trusted status for healthcare professionals will boost this too and reduce the bureaucracy in our caring system.

There is a well known saying in good hospitals, “The best hospitals keep people out of them and get people out of them.” This principle strikes at the heart of what has gone wrong in recent years. The problems in A&E, emergency services and waiting times stem from a failure over the past 14 years to design by this doctrine. The key to resolving those issues lies in primary care—preventing people from needing hospital services in the first place and enabling faster discharges when they do. That is where the focus must be.

Oral Answers to Questions

James Frith Excerpts

Tuesday 23rd July 2019 Commons Chamber

[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.

--- Later in debate ---

[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.

[James Frith]

Sufferers of CF, as we have heard, are well used to the new hope of changes in the Government, but it soon becomes yet another false dawn: they are left drowning in their disease without access to Orkambi. The Minister has to lean in on the business end of the job that she has to do. Will the Government use their leverage, support the buyers’ club—the drastic action that CF sufferers are having to take—and supplement access to the equivalent of Orkambi? That might finally get Vertex to the table to do a deal on this important issue.

[Seema Kennedy]

As I said to the hon. Gentleman and other hon. Members in the Westminster Hall debate on the drug, a deal is the preferred option. However, the attitude taken by Vertex, which has been called an outlier in this situation, means that my right hon. Friend the Health Secretary has instructed NHS England to look at other options.

Cystic Fibrosis Drugs: Orkambi

James Frith Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

The hon. Gentleman is right. Cystic fibrosis is a rare disease that particularly affects this part of the world, so we must find a way of working together across the whole of the UK.

[James Frith (Bury North) (Lab)]

The hon. Gentleman is making a compelling case. I know that this issue matters to him and to many others in the Chamber. One of the many issues that victims of this wicked disease face is that they cannot congregate and make the case for themselves—such is the risk of infection. It is therefore incumbent on us to make a cross-party effort to amplify their cause. They face the inflexibility of NICE and the rigidity of Vertex’s pricing, but they now have the hope that the Minister will hear anew the campaign from colleagues from across the House.

Does the hon. Gentleman agree that, in this instance, per-patient pricing is not an accurate conclusion for Vertex to reach? It should take the deal on the table and begin to save lives; its indecision to date is costing lives.

[Paul Scully]

The hon. Gentleman has absolutely nailed it. That is very much the point. This is about human beings, and we are dangling something in front of them that they just cannot access. The fact that people go off to Argentina and spend their own money to get the drug is ridiculous. That is a really important point.

Oral Answers to Questions

James Frith Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Steve Brine]

This comes back to the matter of public health budgets—£16 billion during the current spending review period, with local authorities best placed to make local decisions on what is needed in their local area. That is the same in the right hon. Gentleman’s area as it is in mine.

[James Frith (Bury North) (Lab)]

Last month, the Mayor of Greater Manchester adopted the five recommendations of my report, “Living Well and Dying Well”, which seeks to include hospice care provision more formally in our NHS and social care planning. Will the Minister meet me and representatives of our hospices to see how we might best make use of these brilliant community health assets?

[Caroline Dinenage]

Yes, I am happy to meet the hon. Gentleman to discuss the matter. Hospices provide an incredible level of care right across the UK, and we cannot do enough to support them.

Access to Orkambi

James Frith Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

I agree entirely. We sometimes spend vast amounts of public money reacting to a problem, and the rhetoric is all about prevention and early intervention, but we end up doing the opposite. This is a very good example of that.

[James Frith (Bury North) (Lab)]

rose—

[Mr Lewis]

I will give way to my hon. Friend and then I have to make progress.

[James Frith]

I congratulate my hon. Friend on securing this debate. Does he agree that there is a human cost to this gridlock for cystic fibrosis sufferers, who are victims of this disease and this disagreement? Frankly, NHS England should get in a room with Vertex and they should stay in there until they come out with an agreement to end this gridlock, so that cystic fibrosis sufferers do not see this debate just as yet another conversation but as delivering change and transformation of their lives.

[Mr Lewis]

My hon. Friend clearly wants to finish my speech off for me. Of course, he is absolutely right to make that point. The most important thing to see from this debate is action, not words. I will go on to talk about what those actions should be.

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

I say from the outset that there are 22 people in the Chamber for this Adjournment debate. Normally, it is me, the proposer of the debate and the hon. Member for Strangford (Jim Shannon). I say to the hon. Member for Bury South (Mr Lewis) that it is nice for other people to be here with us. I will say at the start that I will not take any interventions. A lot of Members have come to listen to this debate, and they want to hear the Minister. There are things that I as the Minister need to put on the record, and I am going to put them on the record before we finish at 8.5 pm.

I thank the hon. Gentleman for securing this debate and for giving me the opportunity to speak once more on an important issue that matters to me and my constituents as much as it does to his. May I again place on the record the sterling work undertaken by the Cystic Fibrosis Trust? Its support for cutting-edge research, campaigns to drive up standards of care and support for the CF community is fabulous. We are lucky to have it.

Once more, we have heard hon. Members make compassionate—that is a very good word—pleas urging an immediate resolution in the ongoing discussions between NHS England and Vertex to make Orkambi available on the NHS in England. To the hon. Member for North Down (Lady Hermon), who raised this in an intervention, I say that, absolutely, I will make sure my officials are talking to the permanent secretary—the very hard-working and probably overworked permanent secretary—at Stormont, because we need to make sure we have a joined-up approach. I wholeheartedly agree with everyone’s calls for exactly that: every effort must be made to ensure that precision medicines are made widely available to cystic fibrosis patients.

Many people have raised concerns this evening and in many other places about NICE’s process for the assessment of drugs for rarer diseases. I said this in the last debate in Westminster Hall and I will say it again: it is a key commitment of this Government to ensure that people with comparatively rarer conditions, such as CF, get the same quality, safety and efficacy in medicines as those who have more common conditions. I assure the House that where a company is willing to set a fair price for a drug, NICE’s technology appraisal process has been proven to be suitable for the assessment of drugs for rare diseases.

[James Frith]

Will the Minister give way?

[Steve Brine]

I said I would not give way, and I will not do so.

I thought the hon. Member for Bury South made a good point when he said if NICE did not exist, we would have to invent it. I agree. Indeed, NICE has been able to recommend a number of drugs for patients with rare diseases through its technology appraisal process, including pirfenidone for pulmonary fibrosis and mifamurtide—why they cannot produce easier names, I will never know—for a rare form of bone cancer, to name but two.

I know that it is distressing, to put it mildly, for patients and their families, as well as campaigners, when NICE is not able to recommend a treatment. Unfortunately, there will continue to be occasions when NICE is not able to a recommend one for routine use on the NHS. As we know, NICE has not so far been able to recommend the use of Orkambi for treating CF, because the benefits were not sufficient to justify its considerable cost. At list price, the cost per quality-adjusted life year of Orkambi is many times higher than the upper end of the threshold used by NICE in deciding whether to recommend a treatment. NICE does not stick rigidly to a cost per QALY threshold, and it applies plenty of flexibility in deciding whether to recommend treatments where the decision is a borderline one. However, it must be stressed that the cost per QALY is not an arbitrary measure, but a tool to assess what the impact would be on other NHS patients if the NHS were to spend money on a particular treatment.

I want to talk about the discussions with Vertex. As Members know, NHS England has been in intensive discussions with Vertex to encourage it to lower the cost of Orkambi to a level that would allow NHS England to fund its use without adversely impacting other patients. I and the Under-Secretary of State Health, Lord O’Shaughnessy, who sits in the other place—he leads on this area for us—have been keeping an extremely close eye on these discussion, as I promised the House in the Westminster Hall debate I would do. As Members will remember, we wrote to Vertex in April, urging it to commit to pricing that is responsible and proportionate. I have the personal assurance from NHS England that it is committed to seeking a way forward in these negotiations, and I think it has shown flexibility.

Sadly—I am not ratcheting up the rhetoric or name-calling, as this is just fact—Vertex has been unwilling to price responsibly thus far, which has, as we have heard today, meant that patients have missed out on two years of treatment. Vertex claims that it has made the NHS

“the best offer in the world”—

but it has yet to substantiate that claim. I would challenge Vertex to waive confidentiality—which it can do: I cannot—so that we can all see, in the interests of transparency, the kind of prices it is trying to charge the NHS and, as a result, our constituents.

As mentioned this evening by the hon. Member for Bury South, NHS England wrote to Vertex yesterday to set out a proposed five-year deal with an option to extend, which provides the potential for Vertex to secure revenues from the NHS in the region of £500 million over the next five years. NHS England has made the content of this proposal public, to give patients and taxpayers the opportunity to make a judgment about the fairness of this offer. The proposed deal, if accepted, would guarantee immediate and expanded access, as clinically appropriate, to the two licensed medicines, Orkambi and Kalydeco—as was said earlier, Orkambi is not the only show in town. It would also provide immediate access for Symdeco from the date it is licensed for use in the UK, which is expected in coming weeks.

If Vertex is not willing to accept the deal, it must return to discussions with NICE and go through that process. Let me be clear that I truly hope it does not come to that, but until Vertex adjusts its prices, NICE will not be able to recommend the drug’s use. I repeat that we have put a figure on the table. The ball is in Vertex’s court. It has made a preliminary response today, saying that it is good to see that NHS England is negotiating. NHS England has been negotiating throughout. It is not Ministers who are negotiating on this.

Oral Answers to Questions

James Frith Excerpts

Tuesday 20th March 2018 Commons Chamber

[James Frith (Bury North) (Lab)]

Seventy MPs from across the House in yesterday’s Westminster Hall debate all agreed that we need Orkambi on the NHS now. Can the Minister tell me what he will be doing differently for sufferers of cystic fibrosis and when we will hear news of a breakthrough? Sufferers of cystic fibrosis are slowly drowning in their disease without access to Orkambi.

[Steve Brine]

It was a very good debate, and the hon. Gentleman spoke very well in it on behalf of his constituents. We have made a counter-offer to Vertex. I call on Vertex to be reasonable, and I call on Vertex and NHS England to get back round the table and get this sorted.

 Orkambi and Cystic Fibrosis

James Frith Excerpts

Monday 19th March 2018 Westminster Hall

[James Frith (Bury North) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Evans. My constituent Graham Little got in touch with me. His wife Claire has cystic fibrosis. Until that moment, I was not aware of the potential life-changing drug available to sufferers of cystic fibrosis. Graham and his father-in-law Brad raised with me the status of the precision medicine Orkambi. The result of today’s debate could make the difference and give them decades more with their wife and daughter, Claire, and give her decades more with her children. I cannot imagine how that must feel.

We can either observe the steady death caused by cystic fibrosis—it has been compared to drowning—or reach for the life jacket, which is primed, ready for use and in all sizes. Our country has the largest number of cystic fibrosis patients anywhere in the world, so we ask the Government what they are going to do for our cystic fibrosis sufferers. If they will not make Orkambi available, what are they going to do? The transformative, life-prolonging impact of the drug is tantamount to life-saving. Used early enough, it can ensure that people fulfil their potential. It can prolong life and lung capacity, enabling those with the disease to contribute to the economy and wider society, as well as providing extra decades with family and loved ones.

The Government should consider the case for a commissioning body for rare diseases. It is not right that the judgment criteria used to determine funding on globally common diseases are universally applied when the uncommon traits of a rare disease bring untypical symptoms and a different economic argument. We risk overlooking the incredible efficacy of the drugs now available.

The power in numbers is not much solace to a cancer sufferer, but such is the profile of cancer treatment that we are all assured of the progress being made there. The same cannot be said for the rare diseases argument, however. We have a job to do in making the case for rare diseases. I hope the Minister will listen to the case being made for a medicine and treatment decision-making body for rare diseases, as well as consider how we bring NICE into the modern age, 20 years after it was established.

[Liz Kendall]

My hon. Friend will know that the Government review NICE once every three years. Does he agree that the next review, which will start in July this year, must look seriously at how NICE makes its decisions? Does he also agree that the results of that review should come out quickly? Last time, it took about a year and a half.

[James Frith]

I completely agree with my hon. Friend. We need to see far more nimble-footed decision making by the decision-making body, as per my call for a specific dedicated body for rare diseases. Parents in my constituency make the case about the plight of those with rare diseases. There is a constant sense of those enduring rare diseases being overlooked.

We come to the remaining agents at the table. Just this weekend, NHS England has refused to agree to the deal that Vertex proposed last month. I do not think the wording of the refusal was constructive, but I am not surprised that the NHS was unwilling to sign up in principle to the deal, which amounts to a futures prospectus from Vertex off the back of a sure thing with Orkambi. Patient groups are at the table, and I commend the work that the Cystic Fibrosis Trust is doing on behalf of CF sufferers.

We need compromise and urgency from all. Nobody should expect Vertex to surrender its drugs, but neither should we accept a failure to reach an agreed price. I say to Vertex that the pipeline might need to be for another time. When I met Vertex, I cautioned that its “portfolio of drugs” approach may be cost-prohibitive to a decision, and that appears to have been the case. We need Orkambi for patients today. It is not the time to test the innovative decision making of NHS England. Vertex should take in good faith that a fair price to the world’s largest population of cystic fibrosis sufferers will set it up well for future developments. A price somewhere between what it was offering in its recent pipeline deal and a single purchase deal is where we are now. I ask Vertex to please stay at the table. We keep in mind its proposal of having Orkambi readily available, swiftly and easily, for all. We urge focus on enabling that. The rest will surely follow.

At the table, there is a ministerial chair that needs filling by a Minister who is willing to lean in to the debate and signal their support for prescribing Orkambi on the NHS; willing to lead and lean in to the deal-making part of the job to transform lives; willing to look at the costs and to help with the price; and willing to align the political will to the possibility of life for those with cystic fibrosis. Treatment for cystic fibrosis has moved from science fiction to science fact, so the Minister is required to act and step in. The Government have a choice to make. They can ignore our arguments, or, having heard them, choose to change their mind. In changing their mind, they can change lives and lifetimes. I urge the Minister to do that and make real-life change for cystic fibrosis sufferers a reality. He would have support from Members across the House, as has been demonstrated by the magnificent strength of feeling in the contributions and arguments made today.

--- Later in debate ---

[Steve Brine]

I thank 163 of my own constituents who signed the petition and who have been in touch with me, and one who has been to my constituency surgery. I may be the Health Minister responding to the debate, but I am also a constituency MP and a parent of two young children.

I pay tribute to the Cystic Fibrosis Trust, which does a tremendous job on behalf of all our constituents. I know we are not meant to address the Gallery. I will not do so, but if I did I would thank those who have made the trip in the snow and ice, probably not all from SW1, to come to Westminster today. It is a credit to them that they have made time to do that.

I recognise the progress that Vertex has made to date in its mission—I believe it is a mission—to discover ultimately a cure for cystic fibrosis, and recognise the treatments that it brings to the market. I know Vertex understands the importance of the UK market, and NHS England as a customer, to its future and to that mission.

This petition is calling on the British Government—that would be me—

“to call for a resolution to ongoing negotiations between Vertex Pharmaceuticals, NHS England and NICE as a matter of the utmost urgency. It is essential that a fair and sustainable agreement is found.”

I am here today to do exactly that. It is not a difficult call to agree to. The negotiations must remain constructive and be undertaken with the utmost urgency, for all the reasons we have heard—I will not repeat them all—or, as my hon. Friend the Member for Mid Dorset and North Poole (Michael Tomlinson) said, people living with cystic fibrosis will suffer.

It seems to me that the main ask I have heard from pretty much every hon. Member speaking today is, “Get involved.” I am not the Minister directly responsible. That falls to Lord O’Shaughnessy, the Parliamentary Under-Secretary who sits in the other place, but I can say on his behalf and on mine that we are involved, and you can bet your life that we will continue to be involved. I do not think I can be clearer.

[James Frith]

The Minister says, “You can bet your life” that he will continue to be involved. Any further delay is literally betting lives and the ever-diminishing lung capacity of those who go without Orkambi. What will he commit to do differently from today, and when will Orkambi be prescribed by the NHS?

[Steve Brine]

The hon. Gentleman knows that I cannot give the answer to his when question. I will come to the other bits of his question. His point about the reducing lung function is well made, and has been made by almost everybody. The Government wholeheartedly support efforts to ensure that the precision medicines we have heard about are made widely available to CF patients and other patients. It is true that high-cost precision medicines represent a challenge to the NHS, but they are also a tremendous opportunity to deliver high-quality outcomes through highly specialised treatment. I hope I can go some way to ensuring that people with comparatively rarer conditions such as CF get the same quality, safety and efficacy in medicines as those who have more common conditions, and to doing so in a way that is sustainable for the NHS.

There has been much talk about NICE, which has a difficult job, as the hon. Member for Bury South rightly said, but as we know, England has the second-highest number of cystic fibrosis patients in the world and there is sadly no cure. Current treatments generally target the complications rather than the cause of the disease. Of course, I can appreciate the huge daily burden of treatment for patients and their families, and the uncertainty that they live with. Uncertainty is a huge burden—the hon. Member for Dudley North (Ian Austin) mentioned the mental health burden. It is so important that patient voices are heard during any appraisal process to ensure that that burden is fully understood.

NICE’s technology appraisal programme makes recommendations for the NHS on whether drugs represent an effective use of NHS resources in what we must remember is a publicly funded health system, as many hon. Members have said. There are other parts of the world where, if someone could not afford it or their insurer could not afford it, this would not even be a discussion. That system means that patients can have the confidence that the price paid by the NHS is consistent with the improvement in health outcomes a medicine brings, ensuring fairness as well as the best possible use of funding for patients and the NHS.

Those are very difficult decisions to make, but it is essential that patients are getting the maximum benefit from every pound of our constituents’ money that is spent by the NHS. NICE takes its decision independently of Ministers. The Government rightly have no say in whether a new medicine is recommended for the NHS at the price proposed by the manufacturer. NICE published its final guidance on the use of Orkambi in July 2016 and, as we have heard, did not recommend it for use in treating cystic fibrosis. That, of course, is not the end of the story, and I do not want it to be. I will return to that in a moment—although, ironically in a three-hour debate, time is short for me to give our position.

Since 2013, NHS England has been responsible for securing high-quality outcomes for patients with cystic fibrosis. Six years ago, it agreed to fund Ivacaftor and Kalydeco for cystic fibrosis patients with the relevant genetic mutation. An additional possibility that may further the pool of treatment options for CF in the near future is the double combination therapy branded Symdeko, which has shown positive results and is currently undergoing European Medicines Agency licensing.

More broadly, the number of medicines for cystic fibrosis patients expected within the next three years is promising, with products being developed by a range of manufacturers as well as Vertex. NICE is aware of 31 other technologies by 19 different companies—not Vertex—that are in the pipeline for cystic fibrosis. Clearly, the prices for any new treatment will also be considered by NICE and we must ensure that the arrangements NHS England enters into now do not restrict options for patients to have the best available medicine in the future. The hon. Member for Bury North made that point very competently.

The NHS is in discussions with Vertex about Orkambi. Vertex has approached NHS England with a proposed deal to reduce its prices. While I cannot share the details of this proposal due to their commercially confidential nature—believe you me, I wish I could—I can assure hon. Members that, at the level that Vertex has proposed, the products are still far from cost-effective. Therefore, there is more talking to do.

Last week NHS England made a counter-proposal, which would ensure that the drugs could be used at a price that is cost-effective. I understand that NHS England has agreed to meet with Vertex—I would jolly well hope so, and of course it is not over email—to discuss that counter-proposal further. I have seen the statements made this weekend—I must say I am no fan of Twitter diplomacy in this or any other form of diplomacy. The statements this weekend were not exactly encouraging, but they must not be the end of the story.

While it is not for Ministers to approve, I truly believe this can be a mutually satisfactory arrangement for both parties. I know I speak for my colleague, Lord O’Shaughnessy, when I say that we are both impatient for a breakthrough and are watching the matter like hawks. I get the message loud and clear: the House has said, “Get involved.” The House has that assurance from me.

I thank all hon. Members who have spoken so passionately. They have helped the cause on behalf of their constituents. On Orkambi in particular, I hope above all that hon. Members can see that this is a live issue and that it is work in progress.

Oral Answers to Questions

James Frith Excerpts

Tuesday 19th December 2017 Commons Chamber

[Mr Hunt]

I understand why the hon. Lady has asked that question. I think it fair to say that NHS Property Services has been on a journey and needs to do even better, but we also want to ensure that NHS land is made available for housing for NHS staff.

[James Frith (Bury North) (Lab)]

Will the Secretary of State consider the NHS as a funder of last resort for hospices such as Bury hospice, so that they can operate at full capacity and play their part in the delivery of social care?

[Mr Hunt]

We often are a funder of last resort for the hospice movement—and perhaps thanking hospices for the extraordinary work that they will be doing over the festive period and beyond is the right note on which to end today.