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.

--- Later in debate ---

[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.

Social Care

James Frith Excerpts

Wednesday 25th October 2017 Commons Chamber

[James Frith (Bury North) (Lab)]

It is a pleasure to speak in this Opposition day debate, and I thank colleagues for bringing it to the House. I pay tribute to the work of Carers UK and the Bury Carers Centre in my constituency in advocating and providing a voice for Britain’s 6.8 million carers, almost 20,000 of whom work in Bury. In fact, it is a mark of the link between my office and the Bury Carers Centre that Ummrana Farooq came to help me with my constituency work and run my office—such is our commitment to the Bury Carers Centre.

The number of carers has grown by 1 million nationally over the past 15 years. Carers now provide care worth £132 billion every year, which is propping up a social care system in crisis. If we acknowledge the silent wards in bedrooms and front rooms and the people being looked after by loved ones, the crisis would be deeper still. Under the Tories, 400,000 fewer older people now have access to publicly funded social care and not because need has reduced; it has of course risen. Age UK says that 1.2 million older people in England now have unmet care needs. The Government’s welfare policies have had an extremely detrimental impact on carers. Some 2 million people have given up work to care for relatives. The low level of the carer’s allowance—£62 a week if caring for someone for more than 35 hours a week—and the freeze on many benefits combine into a toxic force against our carers and their communities.

I want to progress the debate. As a Greater Manchester MP—it is good to hear so many Greater Manchester MPs speak in this debate—I understand that there is a role for hospice care in the social care offer. We need a holistic approach, and we need practical arrangements, not just new money. We need three-year budgets up front. Hospices can play a vital role if the patient tariff can move from the ward to the hospice. They can offer vital respite care provision in towns such as Bury. Bury hospice has empty beds and rooms that would cost a lot less than a hospital bed for the night, so I urge the Government to look at the patient tariff. Have they considered the supporting role that hospices might play in the social care system? Come and look at Bury hospice and the work we intend to do with our Pennine colleagues.

Valproate and Foetal Anticonvulsant Syndrome

James Frith Excerpts

Thursday 19th October 2017 Commons Chamber

[James Frith (Bury North) (Lab)]

I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this important debate, which I hope will compel change. I also join colleagues in putting on record my thanks and admiration for the FACS Association founders, Emma Murphy and Janet Williams, who are here today. Emma and Janet are an inspirational pair who have turned their life-affecting experiences as victims of this syndrome, and their knowledge of victims of it, towards justice on the issue and the demand for better knowledge of the risks that sodium valproate poses to our unborn children.

I speak as someone who for 10 years or so took sodium valproate, not in utero, but in childhood. At seven years of age, I was rushed to hospital with meningitis. Within a few hours, I was fighting for my life and in a coma for two days before responding to a spinal tap. I was one of the fortunate ones and survived without any of the known side-effects such as deafness, blindness or amputation, which routinely follow for those suffering from meningitis. Instead, I was left with epilepsy for the six years that followed. During that time, I got pretty close to the NHS, its out-patients and out-patient wards, and its brilliant teams of nurses and doctors, who worked together to get me better. I was prescribed sodium valproate, and dutifully took Epilim for at least six years, so I stand here also to give voice to epilepsy sufferers in this country.

Let me give the House a sense of what it is like to endure a convulsion. There is a stillness at the control centre of the mind, but a violent movement of the body—an arm, the head or legs. You are aware of it but unable to prevent or stop it. I recall that it is possible to steer it, though I do not know how. I remember, as a young boy, enjoying, like most siblings, bunking down in a bedroom with a sibling and being able, on the rare occasions I had convulsions—only between 4 am and 6 am —to wake my sister, with whom I had enjoyed a sleepover in one of our bedrooms. She alerted my parents and I was observed until the convulsion stopped because there is nothing that can be done.

Epilim—sodium valproate’s commercial name—is widely thought to be the greatest contributing factor to curing me of epilepsy. But for a simple twist of fate, I might have consumed the drug at a different time. When Emma and Janet presented me with the National Archives papers of minutes from 1973 and 1974, when decisions were taken to withhold the knowledge of the risk to foetal development, I was stunned. There were notes in those minutes advising two consecutive, different Governments not to include any warning or information on the risk. It is all too familiar: another national cover-up and further scandal from those closed decades; the “we know what’s best for you” attitude taken by the few to the many, and often said by men to women; the long wait for social justice, and a burning injustice finally coming to light. There was conspiring against the women for whom the drug was prescribed.

I want to spread not fear, but knowledge of sodium valproate. I stand here as a record of its effectiveness, but I also stand up for the unborn children, the women and the expectant parents to whom the risks are not widely enough known. I welcome the news that warnings will feature on the outside of packaging and hope that our medical leaders and the Government will appreciate that issuing guidance is not the same as ensuring knowledge.

I support practical steps such as the distribution of the valproate toolkit to all clinicians, pharmacists and women for whom the drug is prescribed. The Government have a duty to respond with practical steps to address the problem. However, our fight is as much against the cover-up as it is for the clear picture we need to send to parents where mum is taking valproate.

Let this be another moment where we draw caution for all those in positions of power who are about to make decisions that keep people in the dark, or withhold information that is life-affecting, life-changing or poses risk to life. Life will catch up with you. The truth will out. An open and tolerant society has freedom and equality of access to information as a guiding principle to life in it.

On health, decisions should not be made for us, but taken with us: nothing about us without us; a democratic voice at the table; an informed patient choice, not deals in the dark. We have a democratic deficit in decision making on health matters and services. Sadly, on the evidence of last night, there is a democratic deficit on the part of the Government, too. They say they are a listening Government, but I think we have a Government who refuse to hear.

I urge the Government to listen, to make amends for this national scandal, to look at compensation, to address the lack of knowledge, to apologise to the women and to the children who are now men and women themselves, and to make clear our instruction that no content or information pertaining to health and medical prescriptions and the decisions for patients to make should ever be withheld again.