The National Health Service

Mike Penning Excerpts

Wednesday 23rd October 2019 Commons Chamber

[Jonathan Ashworth]

I completely agree, and I pay tribute to my hon. Friend and to hon. Members such as the right hon. Member for Hemel Hempstead (Sir Mike Penning) who have led the charge in this debate. If medicinal cannabis has a medicinal, therapeutic value, it should be allowed. If there are issues in the bureaucracy that are slowing it down, and if that needs legislation, we will work with the Secretary of State to get it through, if that is where the blockage is. If the blockage is in some other area and he needs our co-operation, we will co-operate with him. We need to resolve this, because too many young people are going without the help they need.

[Sir Mike Penning (Hemel Hempstead) (Con)]

The shadow Secretary of State is being very generous, and I thank him for his comments—the families, who are the most important people, will be very conscious of what he has said—but we have to be very careful when describing this: we are after the medical use of cannabis on prescription. The medical use of cannabis often relates to cases where people have felt they would take it in other ways. We are not talking about the casual use of cannabis, about a spliff in the armchair. I will raise this with the Secretary of State when he is on his feet: we are saying that where a qualified consultant feels that cannabis on prescription would benefit the child, particularly if they have epilepsy and fits, it should be available free on the NHS. I think that is what the hon. Gentleman is saying.

[Jonathan Ashworth]

Absolutely. There appear to be blockages in the system, however, and my offer to the Secretary of State is this: if those blockages are there because of legislative or regulatory issues that need resolving in this House, I will co-operate with him to get those resolved. If it is not about regulatory issues in this House, I will continue to reinforce the issues that the right hon. Gentleman is putting to him and urge him to intervene using his good offices.

Many vulnerable people are waiting longer for treatment or being denied treatment, sometimes, sadly, with devasting and tragic consequences. The standards of care enshrined in the NHS constitution are simply not being delivered. A&E waits in September were the worst they have been outside of winter since 2010. Our hospitals have just been through a summer crisis, and with flu outbreaks in Australia expected to hit us here, our NHS is bracing itself for a winter of enormous strain yet again.

Last year, 2.9 million people waited beyond four hours in A&E. Since 2010, over 15,000 beds have been cut from the NHS and bed occupancy levels have risen to 98% under this Government. The number of patients moved from cubicles to corridors and left languishing on trolleys has ballooned under this Government. When Labour left office, around 62,000 patients were designated as trolley waits, which was unacceptable, but today under this Government that number is 629,000.

What about cancer?

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[Matt Hancock]

My right hon. Friend’s mind is so aligned with my own that that is the very next line in my speech. What of GPs, dentists, opticians and pharmacists? They are all privately provided into the NHS, and they have been since Bevan, but this hard-left amendment would nationalise them.

I like the hon. Member for Leicester South. He is a good and sensible man, so I can only assume that he has been captured by the militant hard-left within his party, whose aggressive proto-Marxist ideology I know, deep down, he has little sympathy for. He is far more right-wing than the right hon. Member for Islington North (Jeremy Corbyn), and I know it because we have it on the record. He used to say that

“there has always been a private element of health provision in this country.”

That is what he really thinks, but he is hostage to the hard-liners and has been captured by Corbyn.

[Sir Mike Penning]

My right hon. Friend knows full well what I am going to raise with him in my intervention, which is the prescribed medical use of cannabis. In my speech later, I will talk about the privatisation that took place under Labour, with the Darzi clinics, polyclinics and the PFI schemes. There is something we could do today for families who are desperate—families who are willing to go on hunger strike and sell their homes because they cannot afford the medication, which this Government have allowed to be prescribed for children who have severe forms of epilepsy and seizures. I know that a lot of work is going on, but these families are desperate. There will be hunger strikes soon and people are selling their homes. We must give them that opportunity to protect their children.

[Matt Hancock]

Yes, I entirely understand where my right hon. Friend is coming from, and he has been a tireless campaigner on this issue. On this point, I also want to welcome the cross-party approach set out by the hon. Member for Leicester South. This is an important thing to get right. Of course each decision for an individual patient has to be clinically-led; we cannot have MPs calling for specific clinical interventions, and I think my right hon. Friend and everybody else recognises that. But there is a problem in the system here, and I have asked the medical director of the NHS to lead the work to resolve the problem. We are working on it, and I look forward to meeting my right hon. Friend and others with an interest in this soon.

The National Health Service

Mike Penning Excerpts

Wednesday 23rd October 2019 Commons Chamber

[Dr Whitford]

Okay; I welcome that. However, I would suggest that the Healthcare Safety Investigations Bill is about looking at mistakes after they have happened. I invite the Secretary of State again to look at the Scottish patient safety programme, which is more than 10 years old and has reduced hospital deaths, including post-surgical deaths, by over a third because the aim is to prevent harm in the first place.

I welcome the Secretary of State’s reference to whistleblowers, but it is not just about having guardians in hospitals. It is critical that the Public Interest Disclosure Act 1998 is reformed. Only 3% of employment tribunals are successful. All Members who have dealt with any cases on this issue will know that the wreckage of whistleblowers’ careers acts as an absolute brake on people coming forward. You can say what you like, but they are faced with the question, “Do I speak up and risk my career, my family income and my home?” It is not just a matter of paying lip service to this issue; we actually need change.

I welcome the ending of the private finance initiative, which was originally brought under a Conservative Government, but was really accelerated, I am afraid, under Gordon Brown. We are now facing the fact that £13 billion-worth of hospitals in England will have cost £80 billion by the time they are paid off. I call on the Secretary of State not just to end the PFI going forward, but to look at whether these contracts could be ended and renationalised to avoid another £55 billion having to be paid over the next 30 years. This problem is UK-wide, so we were saddled with these contracts in Scotland as well. There are health boards across England that are spending up to 16% of their income on their PFI contracts, and that obviously undermines patient care.

[Sir Mike Penning]

The hon. Lady is making a perfect point. I had the honour of being the roads Minister, and I desperately asked my officials to look at the PFI contracts on motorways around the country, including the M25. They found that the cost of coming out of these contracts is so formidable—simply because these companies’ lawyers were frankly a lot better than Gordon Brown’s lawyers when the contracts were written—that no Government would do it, so we are trapped. Some trusts—not least the trust in Romford, which also has a polyclinic—are trapped in debt from the private sector, which makes them completely inefficient.

[Dr Whitford]

I thank the right hon. Gentleman for that point. Of course, Governments can borrow at a much lower interest rate than any private business. Money is being sucked out of the NHS through the PFI across the UK, but there are also other ways in which money is being sucked out of the NHS, particularly NHS England—for example, through outsourcing under the Health and Social Care Act 2012. Private companies have to make a profit. Their chief executive is bound to make profit for the shareholders. They are not bound to deliver quality of care. We have seen clinical commissioning groups get trapped in this way. Six commissioning groups in Surrey tried to bring community care back into the NHS—they were not breaking a contract—but Virgin did what Virgin always does if it does not get a franchise renewed. It sued the CCGs. It is all hidden behind a commercial veil, but we know that at least one of those commissioning groups paid over £300,000 to settle out of court, and six groups together means that the figure was likely to be well over £2 million.

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[Sir Mike Penning (Hemel Hempstead) (Con)]

It is a pleasure to follow the hon. Member for Huddersfield (Mr Sheerman). I fully agree with many of the points that he made, and I think that everyone in the House would agree with them.

I am not usually confrontational politically, so I will do only a tiny bit of that. This fear thing that is being thrown around about a privatisation of the NHS is very damaging. It is not particularly damaging to my party, but it is damaging across politics. I was at the Opposition Dispatch Box as a shadow health Minister for four and a half years, and during that time all those PFIs went through. Under the private finance initiative, private companies were being paid for surgery that was not even carried out. They were contracted for 1,000 knee operations or 1,000 hip replacements which did not take place, and they were still paid. That is what happened under the previous Labour Administration.

We need to admit that we make mistakes when we are in government. We have made mistakes before. I made mistakes as a Minister when I was in seven different Departments—it will probably not be eight now. Governments sometimes make mistakes for the best of reasons. One of the great mistakes was that era of privatisation, with PFI deals that were off the balance sheets, and Darzi clinics. Lord Darzi was a great surgeon, a great medical man; I just happened to disagree completely with many of his proposals which were implemented by the Government, and which, frankly, have not worked. There are still many clinics out there to which trusts have to pay huge amounts of money, not to get out of their contracts but just so that they can carry on. That is something that we need to admit. So, in this House, let us admit that Governments make mistakes and that the PFI privatisation carried out by the Labour party was wrong, although it was probably done for the best of reasons. A PFI hospital was promised to my constituents; it never came even though the Labour party closed the A&E at Hemel Hempstead hospital, in the largest town in Hertfordshire. We were promised that that would be looked after, because St Albans had had its hospital closed. However, it was closed and the whole thing moved to a Victorian hospital in the middle of Watford, which cannot cope today and has not been able to cope since then.

Adding little bits to hospitals, as the hon. Member for Huddersfield (Mr Sheerman) said, and putting a new A&E on the front can sometimes work, but when there is serious funding around, which is what we are talking about now, a modern, new, environmentally proper hospital that can actually have sufficient footfall to enable the medics to work in their specialties is what we need.

I am one of the few Conservative MPs to have been offered the £400 million for a new hospital. I have said to the Secretary of State and to my trust that it is not a new hospital; it is a refurbishment of a Victorian hospital in the middle of Watford next to a football ground, and my community does not want that. The people of Watford might, but if they thought outside the box—I am not being rude to them—I am sure they would agree that it would be better to have a brand spanking new hospital that looks after the communities of Watford and the surrounding areas of Hemel Hempstead and St Albans in that massive growing area just north of the M25.

So I do not want my old hospital reopened. It is still sitting there boarded up; it is just sitting there like a running sore in my constituency. It was a wonderful new hospital when the new town was built, but there she sits now with two wards, out-patient facilities and a minor injuries unit that does not even open for 24 hours even though we were promised it would.

What we want is a tiny bit more money—the Secretary of State knows this; I am not saying anything to the Minister that he does not know. We should not keep frightening people by saying it will cost £750 million or £1 billion to build a new acute hospital on a greenfield site, because we know it will not. We have the experts working for the new hospital action group and I am going to meet the experts in the Department in the next couple of days. So I am saying to the Department, “Hold back for a second on this new hospital for us, because if you hold back a second, we might get a completely different result.”

[Barry Gardiner (Brent North) (Lab)]

The right hon. Gentleman is speaking very candidly and with great integrity. My mother died in the Hemel Hempstead hospital that he speaks of many years ago. He talked about PFI and some of his remarks are absolutely spot on, but does he now recognise that the money owed on the PFI liabilities is actually £9 billion, as opposed to the £11 billion, which is the backlog of what hospitals are paying to the Department itself because of the borrowings they have had to take out as a result of the financial problems they are facing?

[Sir Mike Penning]

As was said in debate with the Scottish National party spokesman earlier, the Government can borrow money much cheaper than any private organisation.

I am thrilled that there is some honesty in the Chamber, because we have argued about PFI for donkey’s years; it was a way of getting things off balance sheet, and let us move on from that. There is no more PFI—we can all agree on that—but actually we are not privatising the NHS, as everybody with an ounce of common sense knows. The NHS is perfectly safe; it has been safe under this party for the majority of its time since inception, and it will stay perfectly safe. There are massive demands on it, however, and I cannot allow all this money—taxpayers’ money—to be put into a Victorian hospital next to a football stadium in the middle of Watford. Anybody who knows our part of the world knows that Watford football club is in the premiership. It might be struggling a little bit at the moment, although it did very well against Spurs the other evening. Let us pause, get the experts around the table and stop scaring people with costs that are completely unrealistic—new hospitals were built in Birmingham for £425 million and a new one can almost certainly be built in Harlow for similar amount. Let us have a 21st-century hospital. Let us be honest with each other and move that forward.

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[Alex Norris]

Having had a long four-and-a-bit hour vigil in the Chamber, I have not had chance to see that, but I certainly will. That is the picture up and down the country, including in Nottingham. The key thing is that as well as being absolutely dreadful for the individuals affected, it is terrible for the system not to have those good, often early, interventions on drugs and alcohol. If we let those things spiral, the impact on the individual and the costs related to the system grow exponentially. These are really bad value choices and we could do much better on public health.

I will finish with a point about cannabis on prescription. We have had important conversations on this today, and it is good that both the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi) are here. Their leadership on this has been absolutely crucial. I heeded what the right hon. Gentleman said about how to describe it, and I changed my speech from saying “medicinal cannabis” to “cannabis on prescription” as a result. I have had a case in my constituency, as many have, with a very, very frustrated parent who could not understand why their child did not fit the criteria.

[Sir Mike Penning]

The hon. Gentleman is making a really important point, and I thank him for changing his speech slightly. The reason why it is so important is that we need the observational trials. We need to know about the THCs and the chemicals that come from the cannabis oil; we need to know the strengths and what it is. That is why talking about the prescribed medical use of cannabis oil is crucial when we make this argument; otherwise, we will lose the public will.

[Alex Norris]

I am grateful to the right hon. Gentleman for improving the quality of my speech by adding that to it. I am very confident about this matter, and this afternoon has only increased my confidence. He will have heard the shadow Secretary of State say that if primary legislation is needed—

[Sir Mike Penning]

It’s not.

[Alex Norris]

Clearly not. Whether it is regulations, or whatever, we are very capable in this place of having a grown-up conversation on this and finding a solution. That is what my constituent and her mother are desperate for us to do.

We are very grateful in Nottingham for our excellent health and social care staff. They do an incredible job, keeping our communities going and bringing hope and enjoyment of life to many people struggling with profound challenges, but they want us to do better. The social care Green Paper would be a good chance to do that, and I hope we can do it quickly. Integrated health and social care promises many virtues. We just need to get around the table and have a proper conversation about it. I hope we can do that.

[Mark Pritchard (The Wrekin) (Con)]

I don’t know about you, Madam Deputy Speaker, but I am delighted that the age of austerity is over. We have heard from the Government today a commitment to record investment in the NHS. In my political lifetime, I cannot think of any Government of any political colour that was so committed to the NHS or a Prime Minister and Secretary of State similarly committed. And of course that must come on the back of a strong economy, not the magic money tree we hear about so often in politics.

I am also delighted that we are talking about something other than Brexit. I hope that we can get the withdrawal agreement and Bill through so that we can pass the Queen’s Speech and legislate to make sure that these improvements to the NHS actually take place.

I want to go local for a moment and thank the Minister and all the team at the Department for ensuring that Shropshire and the borough of Telford and Wrekin have not lost out in this record investment in the NHS. In fact, in Shropshire we are seeing the largest investment in the NHS in its 70-year history: £312 million. That is fantastic news. What does it mean locally? For my constituents, it means that most of the planned surgery—the majority—will take place at the Princess Royal University Hospital in Telford. My constituents will no longer have to take a journey to Shrewsbury for the majority of their visits to their local hospital trust. That is good news.

There is a debate about the accident and emergency award, but I am delighted that today we have heard from the Secretary of State that the A&E has been saved at the hospital in Telford. In fact, it will be the very latest in modern thinking on how A&E services are provided, under the banner of “A&E local”. Of course, some cynics say, “Maybe that’s ‘A&E lite’”. Well, it will not be as long as I and my hon. Friend the Member for Telford (Lucy Allan) are on the case, working in tandem for local people to ensure that we have an A&E that provides what local people need.

I am glad that the Secretary of State, in releasing the £312 million to Shropshire and the borough of Telford and Wrekin, said it was conditional upon the A&E at the Princess Royal University Hospital being adequately run and sufficiently resourced, with the right staffing levels and expertise and with the clinical and medical cover it requires to service the people of Telford and Wrekin. I and, more importantly, my constituents welcome that commitment.

I am also delighted that new services will be coming into the hospital. There is a lot of doom and gloom in some parts of the local media in Shropshire, which one would expect from Opposition voices in other parties, but the good news is that we are going to see a new cancer unit; the good news is that we are going to see a new MRI scanner; the good news is that we are going to see an extra £7 million spent on a completely modernised radiology service; the good news is that we have just recruited 180 nurses to the trust; the good news, further to that other good news, is that we have now recruited 17 extra A&E doctors to the trust.

May I digress for a moment and raise the issue of recruitment, which overlaps with that of social care? I hope that the Ministers will work closely with Home Office Ministers on the points-based migration system to ensure that we attract not just highly skilled doctors from around the world, but others with fewer qualifications and skills— whether it be from India, the Philippines, or other Commonwealth and non-Commonwealth countries —so that we can provide that expanded social care service. Indeed, I hope that we will continue to retain and recruit the very best from the European Union, when we cannot recruit domestically.

Many positive developments are resulting from the Future Fit programme in Shropshire. Let me also say briefly that I am delighted by the Secretary of State’s announcement today of the immediate provision of an additional £400 million, which will enable us to expand our women and children’s unit and ensure that we have a high-quality, modernised, midwife-led unit. That is good news as well.

Finally, let me issue an appeal to Ministers on the subject of mental health, which I raised earlier today. Can we ensure that veterans who are leaving the military and making the transition into civilian life have a pathway of care?

[Sir Mike Penning]

My hon. Friend has touched on an issue that I did not have time to raise because of the time limits which, understandably, have been imposed. The danger of putting ex-military personnel into one box is that, as I mentioned earlier, some will react almost immediately to what they have seen and done, while it will take others years and years. I have close friends who fought in the Falklands war and who are only now being diagnosed with post-traumatic stress. It is important that in local communities around the country, and particularly in The Wrekin, the NHS understands the mental health needs of those who may have served in the armed forces many years ago

[Mark Pritchard]

My right hon. Friend is absolutely right to underline that. He has served in the armed forces himself, and has been a shadow Health Minister and a Minister in many other Departments. I also think that serving doctors should be given more encouragement to go into the reserves to help to stop this problem. As my right hon. Friend says, if post-traumatic stress is not dealt with by means of early intervention, it can turn into the much more difficult and complex condition of post-traumatic stress disorder.

I am sure that my right hon. Friend will, like me and like other Members on both sides of the House, pay tribute to Combat Stress, which has a unit in my constituency and which does a great job, and to Help for Heroes, whose current campaign is intended to ensure that people who are leaving the military under medical discharge with mental health conditions in particular, but with other conditions as well, have the pathway of care that I mentioned through local NHS trusts in all our constituencies.

This is good news for Shropshire. There are still some battles with the Minister ahead, and I will fight those battles with my hon. Friend the Member for Telford, but overall, this is good news.

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[Tonia Antoniazzi]

I thank my hon. Friend; I look forward to keeping on working with him.

It has been an uphill struggle. While thousands of people across the world have access to medicinal cannabis, the law was preventing patients in the UK from accessing it.

We have worked with the amazing families of the End Our Pain campaign, spearheaded by the amazing Hannah Deacon, who is mum to Alfie Dingley. Hannah’s campaigning meant that she got a special licence for Alfie to continue to use the cannabis that had transformed his life in the Netherlands. Then Sophia Gibson and Billy Caldwell were given prescriptions for medical cannabis. The highlight came last year, on 1 November, when there was a change in the law to reclassify cannabis so that it was available for medical use.

At the time, we thought that would mean that the children who were suffering would be able to have cannabis prescribed by specialist consultants. It turned out that that was not the case, so many other children were not given access to this life-changing medicine. Children from all over the UK continue to suffer because the Government are dragging their feet. The medicine is proven to work for many types of sufferers, but children are still being pumped full of steroids and unlicensed drugs that leave them severely impaired. The effect on the families has been terrible—on the children, the siblings and the parents. It is just not fair.

No one claims that this is a miracle drug. It is not a cure for epilepsy, but it does make a huge difference to the quality of children’s lives. Everyone has a right to live their best life.

I have worked closely with the parents of Bailey Williams from Cardiff, Rachel and Craig. I have seen at first hand the difference that this medicine has made to their son. When I called at their house one evening, Bailey got out of the chair, picked up a bunch of flowers and brought them to me. I actually cried to see a child who previously could not get out of bed get up out of a chair and give me a gift of thanks.

A lot of other children have the same story. Alfie has been riding a bike and a horse—something that would never have happened when he was on his previous drugs. The problem is that Alfie is getting to a point where the efficacy of this type of medicinal cannabis is dulling. As with all long-term medication, he needs a review and to be put on a new strain. However, the strict restrictions mean that even Alfie will not be able to access a new strain. As his tolerance to his medication builds, he is beginning to have more seizures. What next for Alfie? What will the Secretary of State do?

As we approach the anniversary of the law change, I want to reflect on what has happened to the lives of the families I have worked with, as co-chair of the all-party group on medical cannabis under prescription along with the right hon. Member for Hemel Hempstead (Sir Mike Penning). At the End Our Pain campaign event on 19 March, the Secretary of State told the families that he would make sure they got the medicine they needed. However, more than six months on from that promise and nearly a year on from the law change, not one new NHS prescription has been made, not one child has benefited from medical cannabis, and not one family have been able to move on with their lives.

[Sir Mike Penning]

Will the hon. Lady give way?

[Tonia Antoniazzi]

I will give way, but I will not take the extra time.

[Sir Mike Penning]

This issue shows the House how people from different parties, with very diverse views on politics, can work together for the good of children. There are children who are getting medical cannabis on prescription, but their parents or grandparents are paying for it. The NHS is free at the point of delivery. Surely that is how it should be.

[Tonia Antoniazzi]

I absolutely agree with the right hon. Gentleman.

I made a personal choice to go to the Netherlands with some of the parents to pick up the cannabis they need for their children—parents such as Emma Appleby who has a prescription for her daughter, Teagan, that costs thousands of pounds. She can afford to fly to the Netherlands to get the prescription because it costs less over there. The Government have created a two-tier system. Parents are forced to fundraise for medicines. One mother has put her house up for sale to pay for the next round of drugs. These families have run out of time, run out of money and run out of patience. All 20 families will go on hunger strike because they are at the end of the line.

I will move on swiftly. On 19 September, six months after the Secretary of State had made his promises, the families were continuing to fight for their kids. They took a bill to the Secretary of State showing the money they had spent on their private prescriptions, and they have delivered letters to the Prime Minister begging him to do something, but they have been ignored. They have not had a response, and that is absolutely disgraceful.

These families are being pushed to the end of their tether, and I honestly believe that it is time for the Secretary of State either to consider his position or to get this sorted. As a mother, if I was faced with this inaction, I would be fighting and fighting to get these life-saving drugs from the NHS—for free. I would be doing everything I could, and that is why I will continue to do everything I can to help these children who are needlessly suffering. I will raise this at every opportunity, and I will not stop until we have the good news that we need.

Health Infrastructure Plan

Mike Penning Excerpts

Monday 30th September 2019 Commons Chamber

[Edward Argar]

The hon. Gentleman is understandably and rightly fighting the corner for his local trust and local hospitals, but I am sure he would none the less welcome the huge investment by this Government in our NHS that this announcement amounts to. On delivering on these commitments, we are clear: we want to see these hospitals built as swiftly as possible. Unlike the Labour party, when we say we will do it, we get on with doing it.

[Sir Mike Penning (Hemel Hempstead) (Con)]

As the Minister knows, in his short time in office I have been pinging his ear, as I did his predecessor’s, over the investment we need in west Hertfordshire. The Secretary of State kindly took a call from me at the weekend. Now £400 million is welcome, but not if we are going to chuck it into Watford Hospital, which is a Victorian hospital that took all the work from Hemel Hempstead Hospital when Labour closed our acute hospital. Hemel Hempstead is the largest town in Hertfordshire. We welcome the money, but we would like a new hospital where we could look after St Albans, Hitchin and Harpenden, Watford and Hemel Hempstead in the 21st century—we do not want to plough this into a Victorian hospital.

[Edward Argar]

My right hon. Friend rightly campaigns vociferously for his constituents in Hemel Hempstead, and I know he has spoken to the Secretary of State about this issue on several occasions. No formal decision has been made on the detail. He will know that his hospital trust has a view. I hope he will continue to engage with the trust and with us Ministers, and that he will put the points that he just put to the House to us in a meeting.

Cystic Fibrosis Drugs: Orkambi

Mike Penning Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

My hon. Friend makes an interesting point. Clearly, a portfolio of drugs is coming through the system. The original drugs treated only 5% of cystic fibrosis sufferers, but now the figure is 50%. The triple therapy that is being researched can benefit up to 90%, and clinical trials show an increase of 10% in some people’s lung capacity in a single week of using the drug. It is disappointing that Vertex has not included the triple therapy in its negotiations about the portfolio. None the less, my hon. Friend is right that the NICE system needs to be reviewed to take an interesting and innovative approach to drug research in future.

[Sir Mike Penning (Hemel Hempstead) (Con)]

There are those who are listening to the debate but are not experts like the families who live with this every day, but lung transplants are a common procedure. The lungs fill up and do not function, and lung transplants are often the only option. How does NICE take that into consideration? It cannot do so when it is looking at the viability and cost-effectiveness of Orkambi.

[Paul Scully]

My right hon. Friend makes a really interesting observation. This morning I saw a number of people, some of whom have had a lung transplant. Orkambi was able to get them to the point where they could have a lung transplant in the first place. I spoke to most of the people via video link, because they could not be in the same room as me due to the risk of cross-infection and aspergillosis hitting their lungs. Aspergillus gets in our lungs, and most of us just bat it off and do not have an issue with it. However, it can adversely affect these people’s lung functions, or even be fatal. That is how debilitating the disease is. What struck me about all this are the mental health issues behind it, which I will come back to later.

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[Sir Mike Penning (Hemel Hempstead) (Con)]

We all hoped that we would not be in this debate again, a year on from the last one. It is a tribute to the House that we have come together, from across the House, for a debate, which probably should take place in the main Chamber, about what is in my opinion an immoral situation, frankly: families are still waiting for a drug that we know can extend lives and prevent a serious need for invasive and very painful surgery. The situation causes a lot of worry among extended families.

Across the Irish sea in the Republic of Ireland—a country that is poorer than us in GDP terms—and in other countries that are also poorer than us, the deal has been done. It is not just a shame but a blight on our proud NHS that we have not come to an agreement one way or the other with Vertex and that we have not made a decision about whether we will go down the Crown use licensing route if Vertex cannot do a deal with us. We could have started that way back—they said it would delay everything, but we are here now, and there are patents being developed around the world. The situation is not of benefit to Vertex—we have heard about its shares—because it has not been able to sell its product in a country with a prominent number of CF sufferers.

Why is this happening? Is it just about cost? Is it just because civil servants and Vertex do not care about the lives of those wonderful people and their children? Is it about greed, or is it about how we procure drugs, as we have heard? When NICE was brought in, it took the politician, quite rightly, out of the decision making. But we cannot be outside it, because we are here as representatives of people who are suffering in constituencies around the country. We are here to be their voice. They have done fantastically well—the campaign group is brilliant: one of the top campaigns out there—but we do not seem to get anywhere. We have to look at how NICE looks at whether something is value for money. How can we value someone’s life? How do we value someone having a lung transplant later in life? What if they are not well enough to have that lung transplant, and they die early? What about the cost on not only physical health but mental health?

Let me stretch the House’s imagination a little. I used to be the roads Minister. Understandably, everybody wants roads—they want bypasses here and there. I had a simple way of looking at them: we would look at the benefit-cost ratio and say, “If we put money into that pot, what is the benefit to the community?” It would be £1 billion for a bypass, but the community benefit would be £3 billion, for example. Clearly, the way that NICE is looking at this drug is that there is not a good cost-benefit ratio, even though we know how much benefit there would be. NICE needs to look down the other end of the telescope.

Things have changed since NICE was set up—medicine has changed and drugs have changed, as the Chair of the Health and Social Care Committee, the hon. Member for Totnes (Dr Wollaston), mentioned. There are generic drugs coming down the line that are fundamentally targeted at certain illnesses, particularly ones that people inherit and are born with. Those drugs can turn off that switch and make the situation better, but NICE was never set up to deal with them. I was a shadow Health Minister for four and a half years; we looked at how NICE could develop and where to go with it. NICE is quite fixed, but because we politicians tell it to be. The House set up NICE—those with a long enough memory will remember when we did—with the Department of Health.

The key is for NICE to look at this issue differently. We can set up trials and we can find out why Scotland has an interim agreement, but the trials are there now. How immoral is it that someone was put on Vertex and their life expectancy got better, but it was removed? We are not talking about millions of people—surely, Vertex could have addressed that. We cannot sit here or in the main Chamber next year debating exactly the same thing that we debated last year. I do not care what colour the Government are: if there is a change of Government tomorrow morning, the issue will be exactly the same. Minister, for the sake of humanity, and families and loved ones, we have to do something about this, and we need to do it now.

Medical Cannabis under Prescription

Mike Penning Excerpts

Monday 20th May 2019 Commons Chamber

[Sir Mike Penning (Hemel Hempstead) (Con)]

I beg to move,

That this House reaffirms its welcome for the change in the law that allows access to medical cannabis under prescription, but notes that only a handful of prescriptions for whole-plant-extract medical cannabis have been issued on the NHS, which has left a significant number of patients, many of whom are children with intractable epilepsy, with no access to medical cannabis and experiencing severe distress; and calls on the Government immediately to act to ensure that medical cannabis is available to appropriate patients and in particular to children suffering severe intractable epilepsy, such as Alfie Dingley whose plight and campaign did so much to secure the change in the law.

It is a real privilege to stand here and represent families from across the country, alongside colleagues from across the House who I am sure will scamper into the Chamber in all haste when they realise how fast the previous business has been dealt with. This gives us a suitable amount of time—some five hours—in which to debate this really serious matter.

On 8 April, Mr Speaker granted me, with support from other colleagues across the House, an urgent question on the medical use of cannabis. This followed the removal of a young lady’s medical cannabis from her family’s possession as they came through customs at Southend airport in Essex. The young lady’s name was Teagan, and her family are ardent campaigners on this issue. They know, because they have been abroad to get medical cannabis oil for Teagan, that it has a really helpful effect on her.

What had an even more dramatic effect on Teagan’s family was that, perhaps not unexpectedly, Border Force confiscated the oil. I do not blame Border Force or the Home Office—we will go into the history of how we got to this position in a moment—who were doing their jobs However, after long conversations on the phone that evening and conversations with the Speaker, I was really pleased to be granted the urgent question.

The urgent question meant that the House could come together to ask why an oil that had been prescribed—admittedly it was prescribed abroad; nevertheless it was prescribed—should be taken from a young lady who desperately needed it because of the seizures that she suffered as a result of her epileptic condition.

The oil was taken away, and the family were promised, quite rightly, that it would be kept in a safe place and not damaged.

On the Saturday a week after the urgent question, the prescription was eventually accepted by the Department of Health and Social Care and the Home Office. I say “eventually” because there is such confusion surrounding this prescribed medical product. It is fascinating to me and even to those within the medical profession.

The first prescription was rejected, and Teagan was not allowed to have the oil back because the prescription did not mention the word “oil”. Even though the description of the product was completely accurate, it was rejected because it did not contain the word “oil”. A new prescription was issued that included the word “oil”, and the oil was released. Believe it or not, conversations then took place about who was going to pay for the transportation of that medical oil to Teagan.

[Kevin Brennan (Cardiff West) (Lab)]

I congratulate the right hon. Gentleman and my hon. Friend the Member for Gower (Tonia Antoniazzi) on the work they have done on behalf of the all-party parliamentary group on medical cannabis under prescription, and on behalf of my constituent Bailey Williams and his family. His mother has written to me about today’s debate, which unfortunately she cannot attend, to say that Bailey really needs urgent access to medical cannabis because of the continuing effect that his constant seizure activity is having on him. Does the right hon. Gentleman feel as frustrated as I do that, many months after the Government first indicated that this medicine could be prescribed, he is still having to speak about it today and I am once again having to raise Bailey’s case on the Floor of the House?

[Sir Mike Penning]

I thank the hon. Gentleman for his intervention. That is what we are here for. Yes, we are frustrated and angry, but actually we are here to do something very important. The only reason the Home Office deregulated this drug and we are in this position today is that this House came together and, more importantly, because the families came together. Those families have young children—I am a father myself, like lots of colleagues in the House—and we all came together to say that the situation was fundamentally wrong. We asked why medical cannabis was illegal if we knew that it helped our children.

[Sir Desmond Swayne (New Forest West) (Con)]

Am I right in my assessment that Ministers have bent over backwards and we have acted in the Chamber to ensure that these products are now available, but that the problem is in the medical profession? What more can we do now? I know that this is interfering in the medical profession, but, frankly, that is now becoming necessary.

[Sir Mike Penning]

My right hon. Friend is absolutely right. The Secretary of State for Health and Social Care stood at the Dispatch Box during the urgent question and laid out in plain English that it is not illegal for a suitably qualified person to prescribe these medical products, so how are we still here?

[Frank Field (Birkenhead) (Ind)]

May I interrupt the right hon. Gentleman?

[Sir Mike Penning]

I will give way in a second.

[Frank Field]

It relates to that very point.

[Sir Mike Penning]

I will give way.

[Frank Field]

I thank the right hon. Gentleman very much. When we heard the Home Secretary speak about this initiative, we all thought that those whose children’s lives were being ruined by fits would from now on find solace. That was not the case for those whose children were beyond help at that stage, but we thought that it would apply in the future. Given that we want it, given that the Home Secretary wants it, given that the parents want it, and given that individual doctors want to prescribe it, some group at a regional level in the Department of Health and Social Care is clearly preventing prescriptions from being issued in a way in which they can be delivered.

--- Later in debate ---

[Sir Mike Penning]

I will touch on many of the right hon. Gentleman’s points later in my speech. The Home Secretary was ever so helpful, as was the Health Secretary, but the Prime Minister played an absolutely diamond role, and we took Alfie Dingley and Hannah Deacon to No. 10 with the petition. I know that we are not supposed to refer to the Gallery, but they are up there watching us, and they were scuttling up the stairs very quickly.

It is vital that we have a proper debate over the next five hours, without worries about time limits. I am not fussed about whether the Government lose their business later.

[Frank Field]

There is no business tomorrow.

[Sir Mike Penning]

There is Government business later on, but I do not care about that. We need to try and flush out and identify the blockages, which is what the Health Secretary tried to do.

[Norman Lamb (North Norfolk) (LD)]

Will the right hon. Gentleman give way?

[Sir Mike Penning]

I will, but I will then try to make some progress.

[Norman Lamb]

In response to another intervention, the right hon. Gentleman indicated that there is a degree of resistance within the NHS and among clinicians, but does he agree that this is about more than that? This is also about the Government’s regulatory framework, which is restricting access to this medication. Many people in acute pain are resorting to opioids, which are highly addictive and potentially fatal, while being unable legally to access cannabis, which can often ease their pain.

[Sir Mike Penning]

The right hon. Gentleman and I often debate health issues. We were both shadow Health Ministers at the same time, and we agree on most things, including on the prescribed medical use of cannabis. The other area to which he was alluding is not for this debate. It is not referred to in the motion. The reason we have managed to get such huge cross-party support and support from families around the country is that we have stuck to the specific issue of prescribed medical use without going into casual use.

[Norman Lamb]

rose—

[Sir Mike Penning]

If I can, I will make a bit of progress, because there is plenty of time for colleagues. I am really chuffed that the Backbench Business Committee gave us this opportunity. When has the Backbench Business Committee ever had five hours for a debate on a Monday afternoon? I am simply thrilled, and I intend to use as much of that time as possible. I got a little note from the Clerks saying, “You should speak for 12 to 15 minutes, Mr Penning”—yeah, in your dreams. [Laughter.]

There is a blockage in the NHS if someone cannot pay for the prescription. There are consultants both within the NHS and outside, but if someone can pay for it in the private sector, private prescriptions are being honoured. The product is available in this country, perfectly legally, to those who can afford it, and that sticks strongly in my throat.

At the conclusion of the urgent question, although it is not in Hansard, I clearly heard Mr Speaker tell the Secretary of State for Health and Social Care that, whatever happens, we will not leave it—he was referring to me. We will go on and on about this until we get justice for these young people.

Looking beyond the small cohort of desperately ill children, there are others in the country who would clearly benefit from medical cannabis. I am not a doctor, but hundreds and hundreds of families have come to ask me whether this means they can get some help. The MS Society has sent an excellent briefing to colleagues today, and the Brain Tumour Charity and many others have also provided briefings.

Constituents come to my surgery, and I tell them that we need to make sure that their specialists, the experts in their area, are saying that they need medicinal cannabis, and then we can fight their corner. We have such specialists in the sector now who are saying that children and young people with epilepsy—my constituent has just turned 18, so their mum will want me to talk about post-18, too—get a tangible benefit from treating their seizures with these prescriptions, prescribed by a suitable specialist.

We know exactly what are in those pharmaceuticals, yet we still have a crazy situation in which hospitals are telling parents that if they bring these products on to a ward when their child is ill, as part of their ongoing medication, social services will be called to look into what they are doing with their family—for a product prescribed by a consultant.

My constituent has just turned 18. When I wrote on behalf of the family to her GP and the clinical commissioning group, which was blocking the prescription, they said, “We are not interested in homeopathic products.” What on earth is going on inside the medical profession in this country? If they do not know what it is, they should go and ask someone before they write stupid letters back to people and break their hearts. I had to send the letter on.

We should look carefully at what we can do to help. It is not for any politician in this House who is not suitably qualified to say to anybody that they deserve to have this product. What we must do is break down the blockages—that is what the Secretary of State alluded to in his answer to the UQ—and find out the reason for them.

[Charlie Elphicke (Dover) (Con)]

My right hon. Friend and I share a passion for this subject. Does he agree that the absurdity lying at the heart of it is that heroin is legally prescribed as morphine, which has been well understood for many years, but that a medical prejudice kicks in when using cannabis for medical purposes? Does that not highlight that there is an inconsistency that needs to be addressed—and addressed quickly?

[Sir Mike Penning]

I completely agree with my hon. Friend. I have been referring to Teagan, and he is her MP. As he knows, she got her medication seven days late, and I am convinced that she would not have got it if we had not secured the urgent question, which is why such debates are important.

I used to be a Minister, and I always panicked about UQs. I always asked, “Why don’t we just do a statement? It is a damn sight easier, and we can control the agenda going forward.” The business managers did not always agree with me on that point.

I might be wrong, but as far as I am aware from our investigations the only NHS prescription that has been issued was through the Home Office. Alfie Dingley got his medication through the panel the Home Secretary set up with the expert group in the Home Office. As far as I am aware, since we changed the law in November no NHS prescription has been honoured. We have had trusts clearly threatening consultants not to do this and we have had their professional bodies do the same—I have seen some of the correspondence. As I alluded to earlier, families have been threatened with social services for bringing the product into the hospital where their child was being treated, even though this was a prescribed drug that is perfectly legal in this country today.

The real issue is: why can only those who have the money, those who have a donor and those who have crowdfunded, or, as in the case of my constituents, those to whom one of the manufacturers has given it for free—there is no way in the world they could afford this, and I thank the manufacturer for doing that, particularly for the family—get this? In the country that is so proud of the NHS, how on earth have we got into a situation where those who are poor do not get it?

[Norman Lamb]

I agree with the points the right hon. Gentleman is making, but the fact that the one prescription that has been issued has been through the Home Office raises an important point: the Home Office should have nothing to do with a health issue and this should be transferred, without delay, by the Government to the Department of Health and Social Care?

[Sir Mike Penning]

To be fair, it has been, and that was before we changed the law in November. The Home Office set up a panel while we looked at the changes of the law. This does not really matter, but a Health Minister is at the Dispatch Box today and a Health Secretary was there for the urgent question, so this is clearly sitting in that Department, but the connotations are still there in respect of, for instance, bringing this into the country—

[Norman Lamb]

And licensing?

[Sir Mike Penning]

I understand that point, but this drug has been moved out of its category into the Department of Health and Social Care and it can be prescribed. The issue is not prescription. Even though there were a limited amount of private prescriptions, they are being issued. I thank the consultants who have met me and my colleagues from across the House who have been campaigning on this. They are willing to do this. As far as I can work out, the blockage is that this was moved too fast to help the families whom we wanted to help; the Department of Health and Social Care and the Home Office were not ready.

That fascinates me, because four and a half years ago— it is that long since I have been a Minister—I stood in Westminster Hall as the Minister responsible for drug policy and said then that the Government were minded to allow the medical use of cannabis under prescription. Do they not read our debates? Do they not listen to what Ministers have to say? I do not know whether they thought I was having a flier and as a Minister of State was just doing this because I felt like it on that day. But the then Home Secretary is now the Prime Minister, and of course I did it with her permission.

[Norman Lamb]

What did Ministers do after the right hon. Gentleman made that point in Westminster Hall? He says that that was four years ago. Why did it take until last year for the Government to do anything?

[Sir Mike Penning]

You should have seen the reaction of some of my civil servants when I got back to the Department after making that comment in Westminster Hall! You would understand then why this went exactly nowhere, even though I pushed and cajoled. Sadly, or fortunately, I was moved to the Ministry of Defence after the 2017 election.

So why are we here today? Why have colleagues come into the Chamber, which was completely empty 10 or 15 minutes ago, when they could probably go, as I do not think there is going to be a vote? I say that because the Government have indicated to me that they have accepted the motion, which is votable, if we needed to do that. I have indicated to the Whips that if we needed to do this, I would push it to a vote. I do not think we need to, simply because, after listening to the debate, the Minister will realise, “Hey, we’ve got to move faster.”

Are we moving fast? No. Are we moving faster than we were? Yes, but more needs to be done. Why is that? Because young people are having massive seizures that are affecting their lives and those of their loved ones. They are affecting their families and their quality of life in this country today.

We can do something about that. We are on the journey of doing more about it, but I ask more as a father than as a politician: why do they have to find the money and go to Holland or to Canada? If they cannot find the money, they are not going to get it, unless someone donates it to them or they crowdfund. In the 21st century, why are we allowing these children to be given drugs that are not working and that were never designed for the use for which they are being given, while we have products out there that the pharmaceutical companies are producing, and we know exactly what is in them? It may not help—it may not stop those seizures—but for some people it clearly does. It is morally wrong for us to sit back and allow those children to suffer, and I have no intention of doing that.

[Frank Field]

On the unsatisfactory position that the right hon. Gentleman has described, with desperate families going to Holland to buy these drugs, could the Home Secretary not say today that he has instructed Border Force not to prevent anybody from bringing the drugs back into this country?

[Sir Mike Penning]

I forgot to do so earlier, so I pay tribute to the right hon. Gentleman. We both asked some questions in the House prior to the Home Secretary’s changing his decision, and the right hon. Gentleman kind of goaded me into some of the things that I wanted to do. The right hon. Gentleman and colleagues might remember that an important debate on Europe was due to take place on the Wednesday, when Alfie Dingley and his family were going to Holland, and on the Monday I said that the right hon. Gentleman and I would go to Holland with Alfie Dingley and bring it back, and if we were arrested, so be it. I think the Government might have lost that vote on the Wednesday had we not changed the law in time. I do not think that matters; what matters is that Alfie got his medication.

On the right hon. Gentleman’s specific point, the answer is yes, if it has been brought back with a prescription. We are still in Europe and, as I understand it, European prescriptions are as good as ours—I am told they are, but who knows?—and if they have been over and brought it back with the prescription, it is seriously wrong to take that product off a young child.

--- Later in debate ---

[Jeff Smith]

I am delighted to have given way to my hon. Friend to allow him to pay that tribute to our visitors today.

I have received two letters from a constituent of mine, who has asked me to keep his name confidential. I am happy to give it to the Minister on a confidential basis. My constituent first wrote to me on this issue last September, after the Government accepted the principle that we should be able to prescribe medical cannabis, because the aim had not been fulfilled. He wrote:

“I have a grandson who suffers from a severe form of Crohn’s disease. He is in constant pain and finds that his present regime of opiate-based pain killing has difficult side effects. He tells me that his consultant doctor is willing to prescribe the cannabis-based alternative as soon as it is permitted. My grandson has never obtained cannabis illegally and does not intend to do so.”

My constituent wrote again to me in April. Things had moved on, but this probably illustrates the problem. In the second letter, he wrote:

“The position in my family is now relatively fortunate. Left in limbo for a long time by the NHS, and enduring frequent nausea and serious debility, my grandson used his own initiative. He found a private doctor specialising in pain control, a highly respectable man, formerly an NHS consultant, who gave him a prescription for a cannabis product. This has been successful. His symptoms are under control, his general health and capacity to eat are much improved, and he is being phased back into his job, which he had been likely to lose. I am meeting the financial cost to the tune of £695 per month currently. By tightening my belt I can do it, at least for a reasonable time to come. I never spent money to better effect in my life, and I am so grateful for medical science. But some of the sufferers on the TV programme have no financial resources. And for an old Socialist like me it goes against the grain to use private medicine.”

Madam Deputy Speaker, you do not need to be an old socialist to think that this is an unacceptable situation.

[Sir Mike Penning]

I don’t think I’m an old socialist.

[Jeff Smith]

The right hon. Gentleman, who set out the case very well, is certainly not an old socialist. As we heard from him, there are multiple examples of patients who want to access medical cannabis, and whose doctors want them to access it, but are not able to do so. These are patients who last year were given hope that their pain, anxiety and seizures would end, only to have their hopes dashed and frustrated.

--- Later in debate ---

[Jeff Smith]

My right hon. Friend makes an excellent point. He is absolutely right. I am not aware of any evidence of the product making a condition worse. People have been using cannabis for thousands of years. If these worries about side effects were really justified, I think we would probably have seen them by now.

[Sir Mike Penning]

The hon. Gentleman has touched on a very important point. Because we are talking about pharmaceutical prescription drugs, the risk has been relatively alleviated. There is evidence of people using cannabis in a casual way that does have an adverse neurological effect. That is why this whole debate and campaign had to be separated from that so that it is about prescribed use. There is a separate debate to do with casual use. He is absolutely right—people have used it for thousands of years. Some people think that is correct and other people do not. For me, it is about knowing exactly what is in the product that is being given to the patient.

[Jeff Smith]

The right hon. Gentleman is absolutely right. That points to the issue about where we get the product from. The problems, allegedly linked to increased episodes of psychosis, are from high-THC street cannabis, which is not what we mean when we talk about medical cannabis products. As I said, there are lots of different types of cannabis products. They are very often CBD-based, but when they contain THC—the psychoactive element—it is a much, much smaller amount than in street cannabis. It is like comparing apples and pears. He makes a really important point.

We need to look at how we can learn from evidence in countries such as the Netherlands, Germany and Canada, as well as countries that have successfully introduced medical cannabis regimes, such as Australia and Denmark. What work are the Government doing to learn from the experience of those jurisdictions? There are currently at least 138 medical cannabis trials worldwide. We need to take into account that global evidence.

I would like to ask the Minister a number of questions. Why can clinicians make individual decisions on certain conditions but not others? For example, clinicians can make individual decisions on a case-by-case basis on Crohn’s disease, which my constituent’s grandson suffers from, but not on some other conditions.

We need a scoping exercise to look at how we can enable patients to get this medicine now. There are estimated to be something like 3 million cannabis users in the UK, with around 1 million of those using it for medical purposes. Those figures may be high but, whichever figures we look at, there are hundreds of thousands of people using cannabis to alleviate pain or help with a medical condition. At the moment, they get their product from the street—from the illegal trade. That is not good for them or for society. That is the key point. People are already using cannabis for medical reasons and getting it from illegal suppliers.

--- Later in debate ---

[Madam Deputy Speaker (Dame Eleanor Laing)]

The hon. Gentleman made reference to the late Member for Newport West. The House will remember fondly that the late Paul Flynn raised this subject in the House persistently over many decades, and got very little support. I keep looking behind me, expecting to see him there in his usual place—

[Sir Mike Penning]

He’s watching you.

[Madam Deputy Speaker]

The right hon. Gentleman says Paul Flynn is watching us, and I have every confidence that he is. I say on behalf of the whole House that we remember him fondly.

--- Later in debate ---

[John Howell]

I thank the hon. Lady for her excellent intervention, and I agree with much of what she said.

One of the main barriers that I see is the simple question of who is allowed to prescribe. The General Medical Council holds a list—a specialist register—of specialist doctors who are allowed to prescribe. Why do we have a specialist list, and why can only those on that list prescribe? Is it because people are nervous about their careers or other things? Why do we limit the number of doctors who can prescribe in this way? I have read claims that something like 110 patients have been prescribed the medicine, but from what has been said in this debate, I understand that only one has received it.

[Sir Mike Penning]

My hon. Friend gives me a great opportunity to correct Hansard—I have received the message that there are two, both prior to the 1 November decision. In other words, the Home Office specialist team gave it to two, whereas none has had it since the Department of Health and Social Care took this over.

[John Howell]

My right hon. Friend makes a valid point. The question is: why have so few—as he says, only two—actually received their medicine? Why has nobody else received them?

[John Howell]

I will come to the point about training in a moment, if my hon. Friend will be patient, but he makes a valid point.

I appreciate that we have to go carefully, in view of the harm that the unrestricted use of cannabis might do, but the number of people who have received their drugs is a mere pinprick on the surface of those who need them. I am not surprised people go abroad to get their drugs, because it is the only source.

[Sir Mike Penning]

A person can only go abroad if someone is paying for it—if they have reserves or a benefactor, if Grandma or Grandad is paying. If they do not have those things and are relying on the NHS, nul points—they don’t get it.

[John Howell]

I accept that point. In cases of children who need cannabis oil, I am aware of it being crowdfunded, which can be a valuable way of proceeding, but it seems a complete nonsense in a country that is proud of its NHS that people should have to go into the public arena to crowdfund a drug.

I have some questions about this short list that the GMC maintains of doctors who can prescribe medical cannabis. How accessible are these doctors, and what is the waiting time to see one? These are practical barriers to people getting the drugs they need.

A young girl in my constituency—her name is not important—has intractable epilepsy and there is a great hope that medicinal cannabis would improve the quality of her life. Many women who suffer the sort of pain and discomfort she suffers during her menstrual cycle take birth control pills, which eases the pain considerably, but she cannot do that because it reduces the efficacy of her epilepsy medication and leads to a radical increase in the number of serious fits. For Hannah—that is her name—her epilepsy is life-threatening, as she is in a high-risk group of epilepsy sufferers who could experience sudden unexpected death in epilepsy syndrome, and we ought to think about how we can make it easier for her to obtain these drugs and so make her life easier. I mention that because to make these points we need to bring this debate back to examples of real constituents.

My second point is that raised by my hon. Friend the Member for Lichfield (Michael Fabricant) about the availability of guidance and training. In respect of both, there is a great lack of information, and it is not just us who lack information; so does the medical profession. We should do all we can to increase doctors’ knowledge and awareness so that, among other things, we can broaden out that list and GPs and family doctors can have the information they need to make decisions. I have no problem with this being a clinical decision rather than a political decision.

--- Later in debate ---

[Tonia Antoniazzi]

I completely agree. The families of children with intractable epilepsy are in exactly the same position, as are so many other people throughout the United Kingdom. My friend Chris is a very good example of how wrong it is that people with MS or epilepsy have no access to whole plant medical cannabis. As we know, it will never be a cure for everyone, but, as Chris told me yesterday, it provides the chance of a better quality of life. That is what people want. It is what the parents of children with intractable epilepsy want. They are at the end of the road. They have tried everything from the ketogenic diet to unlicensed drugs, which make the children unreceptive and do not improve their quality of life.

[Sir Mike Penning]

I pay tribute to my co-chair of the all-party parliamentary group: without her support, we would not be here today. I feel for her constituent as well as mine. They are asking us to help, and we are doing everything we possibly can, but we are not medics and we cannot prescribe. Doctors seem happy to sign off and prescribe off-label drugs for purposes that have absolutely nothing to do with what those drugs were licensed for, but they are not willing to license medical cannabis. Does the hon. Lady not agree that that is an imbalance?

[Tonia Antoniazzi]

I do agree. It just does not make sense, which is infuriating, because I like to apply sense and logic to most situations, and the current situation is not logical.

Not being able to access medical cannabis leads people such as Chris and the parents of children with epilepsy to consider alternative ways of accessing cannabis, which—as has already been pointed out—is fuelling a dangerous online trade in which, for all we know, they could be buying anything. That is dangerous and wrong. Clinicians to whom I have spoken often ask parents what they have given their children in addition to over-the-counter drugs. Access to CBD alone has great health benefits that are not recognised by many in the medical profession. The right hon. Member for Hemel Hempstead has referred to its being described as homeopathy. When I say that one of my interests lies in medical cannabis, there will always be someone—even a politician—who will make the pun about wacky baccy, and it is really not appropriate. ‘

There seems to be a theoretical concern about the exposure of children to THC, but that is about recreational use; it is not about medical cannabis. Discussions about the legalisation of cannabis for recreational use and about the rescheduling of cannabis for medical use under prescription must not be conflated in the House. Let me put the position into perspective. The law changed because of one boy, Alfie Dingley, and the campaign spearheaded by his mum, the fantastic Hannah Deacon, who is in the Visitors’ Gallery today.

--- Later in debate ---

[Patrick Grady (Glasgow North) (SNP)]

I congratulate the right hon. Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Gower (Tonia Antoniazzi) on securing this debate, and I thank the Backbench Business Committee for managing to schedule it so that we have enough time for a reflective, open and consensual debate—[Interruption.] So far! I am really looking forward to hearing what the Minister has to say in response.

We are debating an issue whose time has come. The individual cases have come together into a campaign that shows where the consensus is beginning to lie. I want to reflect a bit on that, and to speak, as many others have done, about an individual constituency case. I also want to think a bit more about the consequences of the wider campaign.

At the beginning of the debate, some Members, including the right hon. Member for Hemel Hempstead and the hon. Member for Reigate (Crispin Blunt), talked about the growth of the campaign and of public awareness of this issue. Campaigns such as these can often start with what seem to be quite isolated cases. An individual comes to one of our surgeries and the Member then has the incentive to raise the issue here in the House, after which others join in, saying, “I’ve had that as well.” Then we get the urgent questions and the Back-Bench debates, and the issue becomes much more live and mainstream. Members of the public are encouraged to come forward to their MPs with their individual cases, and the broader public are encouraged to support the overall issues. We have seen this in a number of areas. I am reminded of the WASPI campaign—although that is a completely different situation—because of the way in which it snowballed as people came forward to their individual MPs with their local cases and it built into a positive campaign from there.

The policy environment on medicinal cannabis is ripe for change. We have heard today about the knowledge and experience in other countries as the different kinds of cannabis medicines have been rolled out effectively. In fact, we have heard about that happening here as well, because those people who can afford private prescriptions are feeling the benefit of these medicines. However, it is incredibly frustrating for those who, for whatever reason, cannot access the right kind of medicine privately. The whole point of the NHS is that treatment should be available free at the point of need, and that it should be blind to people’s individual financial circumstances. The progress that the Government have made has to a certain extent been welcome, but the hope that was provided when the reclassifications and the provision for prescriptions from individual doctors were announced has now been dashed.

[Sir Mike Penning]

In the spirit of this cross-party consensus, I say to the hon. Gentleman that this is not a dig. This matter is devolved in Scotland, Wales and Northern Ireland. These medicines have been prescribed privately in Northern Ireland. Progress was made there. Scotland could do this; we could do it; and Wales could do it. I know that discussions are going on within the Department, but we must not take this in isolation. This must happen across the United Kingdom. I passionately agree with devolution, but no child should suffer because one area is devolved and people are playing catch-up with the other parts of the United Kingdom.

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[James Cartlidge]

My hon. Friend makes a good point. I would just be cautious about using the term “life-saving”, because this is about easing pain. These medicines are not cures; they relieve the pain of seizures. However, I understand my hon. Friend’s point, as we all did.

The meeting that I organised was instructive for me in many ways. Since then, I have obviously continued to correspond with my constituents to try to explain to them the powers that I have in this case and the next steps that they need to take. When this debate came up, they emailed to ask me to put one question to the Minister. Remember, they are not being prescribed THC-based compounds; they have been offered Epidiolex, which is a CBD-based medicine. They want me to ask whether any other children with epilepsy, or any other condition—of course, it is primarily complex epilepsy—have been prescribed THC-based medicines.

That information is in the public domain in the form of a written answer. As I understand it, 110 items—items, not people—of CBD-based medicine have been prescribed, along with 16 items of THC-based compounds, six of them on the NHS. That is an important point, as my constituents want to know whether others have been granted such medicines, and clearly they have. Where is the consistency? That is the confusion. Of course we cannot know the unique personal medical facts of each case, which must always be down to the clinicians, but we now know that THC-based solutions have been prescribed.

[Sir Mike Penning]

It is fantastic that we have the time to talk these things through. We do not have one NHS because, as my hon. Friend says, some people have been prescribed this. My constituent has been completely refused CBD, and the letter came back saying, “No, Mr Penning, we don’t give homeopathic therapies.”

The fear for those who use CBD is whether the European Commission will consider banning not the prescription but the public purchase of CBD. Apparently the Commission sees it as a novelty food, which we need to discuss because a lot of our constituents use non-THC products, which are perfectly legal, to ease their pain. My constituent has just texted me to say thank you because the medical company has given her some more oil, which the CCG has refused and thus her GP cannot write a prescription.

[James Cartlidge]

I am sure my right hon. Friend’s constituent is very pleased by that intervention. He underlines the key challenge, which is that these medicines are what is known as “artisanal”. They are unlicensed, and they are not standardised pharmaceutical medicines, which can be a problem for doctors who want to know their standard chemical make-up. Doctors feel they cannot entirely rely on these medicines. The nub of it is to what extent we in this place should be pressing those who have to make clinical decisions.

My hon. Friend the Member for Henley (John Howell) said that this has to be a clinical decision, and my hon. Friend the Member for Reigate (Crispin Blunt) made the brilliant point that, if not for us, we would not be in this position and what has been prescribed so far would not have been prescribed. Let us be honest about it: this has been the result of campaigning, which is why I congratulate all those who have campaigned.

Nevertheless, this ultimately has to be clinically based. We cannot have political prescribing. It may be that applying maximum pressure has resulted in some prescription decisions. I hope that is not the case but, in reality, it may have been. We must have a consistent, transparent system that we have faith in and that leads to clinical decisions delivering the best outcomes for our constituents.

[Sir Mike Penning]

That is exactly why NHS England is reviewing the blockages in the signing of prescriptions. The Minister can confirm this, but I understand that the interim report will come out by the end of this month, and I believe the full report will go to the Secretary of State by mid-June, which is very quick for the NHS.

There has to be a level playing field. It is not for us to tell the doctors but, if a suitably qualified doctor is prescribing it, what is the blockage for my hon. Friend’s constituent and for the rest of them?

[James Cartlidge]

That is what I have been trying to understand. If I were to hazard a guess, I think there has been institutional resistance to CBD in general, but particularly to THC. In a sense, we have helped to force an open-mindedness towards it. When people say there is no evidence, what they mean is that there is no evidence from standard clinical tests. The idea there is no evidence is not true, because the evidence is our constituents’ lives and what they are seeing every day. My constituents do not go to Holland, having crowdfunded all that money, to buy something that does not work. They are parents, and we must have faith in them—by the way, all the doctors put a lot of store in that—but nevertheless, the institutions whose guidance lays the foundations for medical decisions ultimately need clinical trial evidence for it to be sustainable, in addition to individual circumstances.

I welcome the Minister to her position, which she very much deserves. My appeal to her is that we put everything we possibly can into getting that empirical evidence and undertaking those trials so that we can say to our constituents that everything is being done to ensure that clinicians can make decisions with the greatest confidence and without the nervousness we have all encountered.

Finally, and this needs to be said, I was asked in my meeting, “You do realise we are being trolled?” We have had debates in this Chamber about the horrible abuse we receive—some of us, particularly female colleagues, have received obscene abuse—but members of the medical profession are now getting the same thing. I understand the frustration of a parent who has done everything they can to support their child and who feels that the system is not helping them. That is why we are having this debate, because we want them to be supported by the system, but there can be no justification for people in the medical profession being subjected to trolling and the sort of abuse I know they have received because they feel they have to make an objective decision. They have the best interests of the patient at heart, and I have faith in the medical profession. It is nervous because of the lack of evidence, so we need to move on with trials as quickly as possible. We need to be able to give our constituents confidence that the system is fair, transparent and consistent, and is not acting in an ad hoc fashion.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

It is a pleasure to follow the hon. Member for South Suffolk (James Cartlidge), who made a powerful and reflective speech. I particularly endorse what he says about the importance of having such evidence, a lot of which comes from the families themselves.

I join in congratulating the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi), the co-chairs of the all-party parliamentary group on medical cannabis under prescription, both on securing this important debate and on the leadership role they have played on a cross-party basis in putting this important question on the House’s agenda.

As many Members have said, hopes were raised last year when the Home Office did what it did, and I strongly support what my hon. Friend the Member for Manchester, Withington (Jeff Smith) said about the importance of achieving a bespoke solution for our country. In particular, I support what he said about learning from international evidence. That combination of listening to the families and the campaigners and learning from the evidence of other countries could assist us in achieving the urgency that we all want to see.

[Sir Mike Penning]

Every other country that has done this has done it in a bespoke way. The fear is that if we introduce a bespoke system for a product or drug, everybody else will jump on the bandwagon, but most countries in Europe have addressed this. It has to be bespoke, not least because cannabis was illegal as a schedule 1 drug in this country for so long, but the evidence is here in the mums and dads and the children.

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

This has been a very moving and important debate. As I know from my own constituency, and as has been outlined with such passion by Members on both sides of the House, this matter leads to great distress for patients and their families. I recognise the deep frustration of families and patients, which has come across strongly this evening. All of us who are parents or who have cared for a loved one can empathise with them. I pay tribute to the hon. Member for Middlesbrough (Andy McDonald) and his wife Sally, who shared their experience with us. It is them and parents like them whom we are concentrating on this evening.

It would be remiss of me not to mention my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Gower (Tonia Antoniazzi), all their work on the all-party group and their tenacity in keeping this issue on the agenda. Many points have been raised. Great frustration has been expressed and I have heard that. I will be speaking to the Secretary of State again and taking back all the messages to the officials, but I will try in my remarks to answer the points made.

In November last year, the law was changed to ensure that doctors on the specialist register of the General Medical Council can legally prescribe cannabis-based products for medicinal use in the UK. It is right that we put these decisions in the hands of clinicians because they are the ones with the best knowledge of all the treatments available for conditions in which they specialise. The Secretary of State and I have been clear that whether to prescribe must remain a clinical decision, to be made with patients and their families, taking into account the best available international clinical evidence—I want to reassure the House that we are in close contact with colleagues in other countries to ensure that we learn from their experiences—and the circumstances of each patient.

It is not for me as a politician to second-guess or pillory clinicians’ decisions. I was alarmed to hear my hon. Friend the Member for South Suffolk (James Cartlidge) say that doctors are being trolled for the decisions they are or are not making. They have the best interests of their patients at heart and their primary focus is to do no harm. But I recognise that we do not have the optimal system in place yet. It is undesirable that patients are travelling abroad. The Secretary of State and I are determined to do everything we can to ensure that patients can obtain medicines in this country if it is medically appropriate. There are already systems in place to do that and I want to do everything I can to understand why patients are not using those systems to access medicines here in the UK.

We want to continue to refine the system so that the demands of patients who want to try medicinal cannabis are balanced against other demands on NHS funding. Given the embryonic state of the evidence base on the effectiveness and cost-effectiveness of medicinal cannabis, that is not easy. However, we are working hard to ensure we get this right, because it is crucial. I have had many discussions about this with my hon. Friend the Member for Reigate (Crispin Blunt), who spoke with great passion. He mentioned the need for more evidence and the issue of growing a market. We will explore that with the Department for International Trade.

I want to pick up on a point that my hon. Friend the Member for Henley (John Howell) made about the number of prescriptions issued since November last year. Data show that, until the end of February, there had been six items issued in the community under NHS prescription. He thought there were none at all.

[Sir Mike Penning]

The evidence from the families and the APPG that I co-chair is that there have only been two. If the Minister knows of six, we would love to know not the individual cases but where the other four have come from. The families are confused because at the moment we only know of two.

[Seema Kennedy]

My information is that there are six and I will happily write to my right hon. Friend with more information.

As the House heard last month, the Secretary of State for Health and Social Care has met many of the families and patients who Members know through their work on the APPG or their constituencies. All of us could not help but be moved by these distressing cases and the continued efforts of those who support loved ones. The Secretary of State asked NHS England to conduct a process review to identify any inappropriate barriers to clinically appropriate prescribing. I am pleased to say that the review is under way, and NHS England is working with my right hon. Friend the Member for Hemel Hempstead, the all-party parliamentary group on medical cannabis under prescription and patient representative bodies to identify cases that might best illustrate the experience of a range of patients.

[Sir Mike Penning]

We have lots of time, but the Minister is being generous in giving way. Can she confirm when the interim report will be issued on the blockages and when the final report will be made to the Secretary of State? It was indicated to us at a meeting with NHS England only last week that there would be an interim report by the end of May and a report to the Secretary of State in June. Would the Minister like to confirm that?

[Seema Kennedy]

I will come on to timelines later in my remarks. NHS England is currently obtaining patient consent and scheduling the necessary interviews with clinicians, decision makers and their patients. The first interviews were held today.

I want to touch briefly on devolved matters. Health is a devolved matter, but officials across the UK have been working closely on the development of this policy. The law is exactly the same in all four countries of the UK and only funding is devolved. Members have said that clinicians might be nervous about prescription and that we need to improve training. I will talk about this later, but the training package that has been commissioned from Health Education England will be made available across the UK.

--- Later in debate ---

[Sir Mike Penning]

Not only was I enormously proud when I went before the Backbench Business Committee to ask for this debate last Tuesday, but I was a bit shocked to get the debate this afternoon—at least we have not had to go home early. We have had an absolutely brilliant debate.

To be honest with the Minister, I am not sure how far this has taken us. Fundamentally, I have an issue with the fact that there are families who, through crowdfunding, or however they fund it—I understand that some parents have had to remortgage—are getting this drug for their children perfectly legally, and qualified consultants and specialists are issuing prescriptions on the NHS, but they are not being honoured. That is something that the Department of Health and Social Care is wholly responsible for. I fully accept that there are other issues to do with the Home Office.

Many people have been marched up to the top of the hill. I accept that for many years, when Paul Flynn was campaigning on this and a Government of a different colour were in office, it did not happen because it was in the “too difficult” pile called schedule 1. We are not in that position now; we are in a position where this House—we have now debated this issue for four and a half hours—can tell the country and the Government that what is happening now, with people who can afford it getting this medicine and those who cannot afford it not getting it, has to stop. This Government have to stop that.

I know how difficult it is. I was the Home Office Minister responsible when this was discussed. I was the Minister who stood at the Dispatch Box. I know the blockages. I have sat with my APPG co-chair, the hon. Member for Gower (Tonia Antoniazzi), and the NHS chief pharmacist. We know that we need to unblock this. We need to believe that the NHS, free at the point of delivery, will deliver for these young families, and that the cheque book is not going to win.

I will raise money and crowdfund, because I will do anything I possibly can to help, but we should not have to do that. The medical evidence is there from other countries. We are going to have to make exceptions, as has been said, because this situation is different. We cannot put one of these children on a placebo, because we know that it will make them really ill when they withdraw from what they have already been given.

The children who have been given this product, and some adults, as in my constituent’s case, need to have confidence going forward. They do not need to beg, borrow and steal to get their lives back on track—and they will not be put back on track fully, because this is not a cure, it just eliminates some symptoms for some people with some conditions. We really do not know the full position yet because, as the Minister has said, we have to do more work. However, in quite a lot of specific cases of paediatric epilepsy with seizures, it appears that cannabis oil makes a difference to the quality of people’s lives. We were sent here not to chat for the sake of it, but to make a difference to people’s lives, and I hope that is exactly what the Minister will do.

Finally, I will clearly not get another urgent question for a while, but Mr Speaker said to the Secretary of State for Health and Social Care that we will persist. He was referring to me, but I say that on behalf of the all-party group, which now has over 100 members. This is what this House is good at, and if we get it right we are very good at it. This has been an excellent debate.

Question put and agreed to.

Resolved,

That this House reaffirms its welcome for the change in the law that allows access to medical cannabis under prescription, but notes that only a handful of prescriptions for whole-plant-extract medical cannabis have been issued on the NHS, which has left a significant number of patients, many of whom are children with intractable epilepsy, with no access to medical cannabis and experiencing severe distress; and calls on the Government immediately to act to ensure that medical cannabis is available to appropriate patients and in particular to children suffering severe intractable epilepsy, such as Alfie Dingley whose plight and campaign did so much to secure the change in the law.

Hormone Pregnancy Tests

Mike Penning Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Sir Mike Penning (Hemel Hempstead) (Con)]

It is a pleasure to be involved in this debate, to be part of one of the largest all-party parliamentary groups in the House, and to look after my constituents and speak for them and the others who have been so dramatically affected. They trusted the NHS and the drug company and so thought that the drug they were taking was safe. As was suggested, these ladies went to their GP surgery perhaps because they had missed their period or had some of the other symptoms of pregnancy. It was such an important time in their lives. Often the GP just opened a drawer, gave them the tablets and said, “This will tell you whether you are pregnant or not.” There were no pamphlets and no advice, even though the risks were known to nearly everyone, apart from those ladies who took those tablets.

In this excellent debate, we have touched on a lot of the science. I am not a scientist or a lawyer; I am just a dad who is trying to help out some constituents in this area and as part of the group. In the debate that followed the publication of this so-called independent review, I said that it was a whitewash, but it was not; it was a cover-up, and we have to discover what is being covered up. Is it the legal side of the NHS giving a drug to a woman on its premises when it knew there was not only a risk, but an effect? Is it the drug company having undue influence on the report, the Medicines and Healthcare products Regulatory Agency, the Department of Health and Social Care, or a bit of everything?

I say to the Minister that this is not about this Government, but Governments. The issue was being discussed when I was the shadow public health Minister, not least by thalidomide campaigners. They were supportive of this campaign, and they had to rely extensively on evidence that was there, but that the Government and the drug companies had ignored over the years.

[Hannah Bardell (Livingston) (SNP)]

Is it not the case that we do not need to be lawyers or medical experts to realise that a drug that is 40 times the strength of the contraceptive pill—it was being given in such countries as Germany as an abortive—would surely have profound impacts on unborn foetuses, or children who were born after their mothers had taken Primodos?

[Sir Mike Penning]

No one in this room or anyone listening to this debate could disagree with that, unless they were a lawyer working for the drug company, the Department of Health and Social Care, or perhaps both.

Believe it or not, Mr Hollobone, 70% of me, you and anyone else in the room is the same as a zebrafish. I swim really well, but I did not realise that until this morning. We chuckle, but the point is that the effects of an experiment on zebrafish will be similar to those on a human being. There are many studies, but the link is important. Professor Neil Vargesson’s report in 2018 supported Professor Heneghan’s report. What does that mean? We all know about the disgrace of thalidomide. Through experimentation on zebrafish, it was proven that thalidomide damaged children. We do not want to experiment on humans. It appears that that is exactly what has gone on here. It is obvious that the mechanism of the action of thalidomide is the same as that shown by the Primodos tests. Everybody can read the technical stuff. There was an effect on zebrafish, who share 70% of their genes with humans. Does that mean it could have had an effect on humans? Of course it does; it is not rocket science.

[Gordon Marsden]

The right hon. Gentleman is taking us through the history. Does he not agree with me that it is extraordinary? We need to remember the chronology. The thalidomide episode took place in the 1960s and was exposed by The Sunday Times and Harold Evans in a great step forward, but the drugs continued to be supplied afterwards. Even now, 40 years later, there is, in the statement of Lord O’Shaughnessy, doubt about whether such things should still be used. We should surely say that they should not be used.

[Sir Mike Penning]

I cannot understand how a drug company, now owned by Bayer, could know what was going on and continue to supply the drug in an underhand way to GPs. As a father—as a human being—I simply do not understand it. What on earth was going on? The MHRA, which gave evidence to us, was in complete denial. We did not ask for a cause. I was lucky enough to be a Minister in seven Departments. If I had said, “This is the review that you are going to do, and these are your terms of reference,” and those terms of reference were changed by the review group without my permission, I would have smelled a rat. I would have thought something was going wrong.

We can go through all the science, which cannot be denied. I do not blame any Minister—I can feel the special advisers’ eyes on my back—but something went dramatically wrong, and it has been covered up by several Governments. That must stop now. If compensation has to be paid, fine. Most of the families simply want an apology. Why is there no apology? Because there would then be the threat of legal action. Mistakes happen. When we make mistakes, we should admit it, no matter what Government are in power. We should sort it. We did that over Hillsborough when I was a Minister in the Home Office. It was a really difficult decision to make, but we made it, and the right conclusion was reached. That should be the case in this instance.

[Mr Philip Hollobone (in the Chair)]

I am afraid I will have to impose a five-minute limit on speeches, or we will run out of time.

--- Later in debate ---

[Brendan O'Hara (Argyll and Bute) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I add my thanks to the hon. Member for Bolton South East (Yasmin Qureshi) for securing this hugely important debate. I congratulate her not only on winning this debate, but on the way in which she forensically exposed the failings of the expert working group—how it changed the terms of reference of the inquiry; its failure to report properly, if at all, on its meta-analysis findings; and the serious questions about the independence and impartiality of the group. She finished by rightly describing the issue as the biggest legal and medical cover-up of the 20th century, but that cover-up has individual victims.

I have met Wendy Brown, a constituent from the Isle of Mull, on numerous occasions. She knows that her disability was brought on by her mother’s use of Primodos when pregnant. Wendy has been a formidable campaigner for the victims of Primodos over the years, and last week she wrote to me, saying:

“My hands and both feet are deformed, which was very hard as a child due to the constant bullying. I also had damage to my neck at birth and was baptised at home as I wasn’t expected to live. The older I am getting the more...pain I am in, especially in my feet which can really wear me down, as no matter what shoes I get they are always painful. I am now getting a very painful wrist, which is due to the way I have held my hand in order to conceal it because it has unnatural motion. This is a growing concern for me because...I work in the Post Office in Tobermory and am not sure how much longer I could keep going.”

That is the day-to-day reality of people living with the effect of Primodos.

Wendy and other members of the campaign group rightly demand justice. We owe it to Wendy and all the other victims never to abandon them in their fight for justice. It is scandalous that the people whose lives have been so badly affected and who, day in and day out, have to live with the physical, social, emotional and psychological pain are being denied natural justice. They will continue to be denied natural justice as long as the United Kingdom’s medical establishment continues to deny the link between hormone pregnancy tests and serious foetal abnormalities.

If justice is to be seen to be done, surely it is time for a statutory inquiry, similar to that for the contaminated blood scandal, in which every single piece of evidence is examined forensically and transparently. If the Government are so sure of their case, they have nothing to fear from such an inquiry. At the very least, it would restore public trust in a system in which it is lacking right now.

[Sir Mike Penning]

The key is for evidence sessions to happen under oath. That is what we called for in the House, and what should happen now.

[Brendan O'Hara]

I wholeheartedly agree; they have to be under oath. Justice would also be served if the Secretary of State were to appear before the Health and Social Care Committee to answer detailed questions about the way the inquiry was conducted, and to explain and defend its findings.

I sincerely hope that the Government are not simply playing for time with this scandal, hoping that in time it will go away. Thankfully, there are people in this House, such as the hon. Member for Bolton South East, the right hon. Member for Hemel Hempstead (Sir Mike Penning), my hon. Friend the Member for Livingston (Hannah Bardell), and many others in the all-party parliamentary group on hormone pregnancy tests, who will not allow that to happen.

Finally, I put on the record my thanks to the members of the APPG for their work to continue to shine a light where some vested interests would rather one not be shone, and for their tireless work in advocating strongly for justice for the victims of Primodos and other hormone pregnancy tests.

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[Jackie Doyle-Price]

I am not satisfied that that is actually what happened. When we receive drafts of reports that are circulated to committees, they often go through amendment.

Let me continue going through the chronology of events. As I said, the evidence did not support a causal association, nor did it disprove one. We will of course continue to review evidence as it arises.

[Sir Mike Penning]

I think this is a really fundamental point. I apologise if it seems like I am going to give the Minister a hard time, but I am. They were not asked to look for a causal link; they were asked to look for an association, and we have now seen evidence that they knew it was there. I know what happens when the notes are written for the Minister. They were not asked to look for a causal link, but for an association. They decided among themselves to change what they were supposed to look at, which is why they came out with the results that they did. That is a really fundamental point.

[Jackie Doyle-Price]

I hear what my right hon. Friend says. There has to be some element of cause, otherwise there is no scientific basis for a judgment. I will have to agree to disagree with him on that point.

Access to Medical Cannabis

Mike Penning Excerpts

Monday 8th April 2019 Commons Chamber

[Sir Mike Penning (Hemel Hempstead) (Con)]

(Urgent Question): To ask the Secretary of State for Health and Social Care if he will make a statement on the return of medical cannabis that was seized from Emma Appleby at Southend airport on Saturday 6 April and which is needed to treat her very ill daughter Teagan’s extreme epilepsy, and to take steps to make sure that medical cannabis is available for prescription around this great country.

[The Secretary of State for Health and Social Care (Matt Hancock)]

My sympathies go out to the patients and their families who are desperately seeking to alleviate their symptoms with medicinal cannabis. We are working hard to get the right approach. The law was changed on 1 November last year to ensure that it is now legal for doctors on the specialist register of the General Medical Council to prescribe cannabis-based products for medicinal use in the UK.

Whether to prescribe must remain a clinical decision to be made with the patients and their families, taking into account the best available international clinical evidence and the circumstances of each individual patient. Indeed, prescriptions have been written for the products that the family attempted to bring into the country and these have been supplied to patients. Without clinical authorisation, it is of course not possible to import controlled drugs, which is why the products were seized by Border Force on Saturday. However, we have made available the opportunity for a second opinion and the products have been held but not destroyed, as would normally be the case.

In relation to childhood epilepsy, the British Paediatric Neurology Association has issued interim clinical guidance. NHS England and the chief medical officer have made it clear that cannabis-based products can be prescribed for medicinal use in appropriate cases, but it must be for doctors to make clinical decisions in the best interest of patients, to balance the risks and benefits of any proposed treatment—including cannabis-based products—and to make a decision with patients and their families on whether or not to prescribe.

To date, research has centred on two major cannabinoids, tetrahydrocannabinol and cannabidiol. There is evidence that CBD may be beneficial in the treatment of intractable epilepsy, and over 80 children have already been supplied with CBD products in the UK on the basis of a specialist doctor’s prescription. I entirely understand how important this issue is to patients and I have met and listened to families. I know just how frustrated they are. Therefore, after meeting parents, I have taken the following actions.

First, I have asked NHS England rapidly to initiate a process evaluation to address barriers to clinically appropriate prescribing. Secondly, to improve the evidence base and to get medicinal cannabis to patients in need, I have asked the National Institute for Health Research and the industry to take action to produce that evidence in a form that will support decisions about public funding. The NIHR has issued two calls for research proposals on medicinal cannabis and I look forward to the responses to those consultations. That is in addition to the training package being developed by Health Education England to provide support to clinicians to enable them to make the best decisions with their patients.

This is a very difficult area, with some heart-rending cases. I look forward to working with all Members of this House to ensure that patients get the best possible care.

[Sir Mike Penning]

I thank you for granting this urgent question, Mr Speaker, on behalf of constituents around the country who need help from medical- prescribed cannabis, and I thank the Secretary of State for coming to meet the families and their loved ones who feel that medical cannabis on prescription may help.

Some of these young children—though we are not talking only about children—have 300 seizures a day. They are given drugs that do not seem to work at all. There is not a cure, but these medical oils can and often do reduce the number of seizures. Many colleagues in the House will know of the case of Alfie Dingley—the only young boy that has an NHS prescription for the medical use of cannabis oil. He is now a relatively naughty boy. He has learned to ride a bike. His sister has a brother she has never really experienced before.

This is not a cure, but these parents are absolutely desperate. When the Government did the right thing and changed the law, they thought the situation was going to get better. In my capacity as joint chair of the all-party parliamentary group on medical cannabis under prescription, I warned them that this was just the start of the journey, and that it would be a long one.

Anyone who saw the footage from Southend airport at the weekend—any father, any parent, anyone who has a loved one in their family who suffers—would understand what that family were trying to do. Cannabis had been prescribed by a consultant abroad because it could not be obtained in this country. Many families are relying on charity to raise the money—in some cases, £1,500 a month—to obtain it on prescription. As the Secretary of State knows, prescriptions are being issued by the relevant experts, but the clinical commissioning groups and the trusts are refusing to honour those prescriptions. It is a disgrace that that should happen in this country, and we should all be ashamed.

I welcome the trials and I welcome the review, but, sadly, people need these medicines now. Can we unlock the door? The Border Force staff at Southend airport were very polite and very helpful. They thought they were doing their duty. We should do our duty, and get that medical cannabis back to Teagan.

[Matt Hancock]

I pay tribute to my right hon. Friend and the all-party parliamentary group for their work in bringing this issue to the attention of the House and the country, and in supporting the parents involved. My right hon. Friend has been characteristically emphatic and reasonable in providing that support, and I entirely understand his concern. Meeting some of the parents as part of the APPG delegation was a very emotional experience.

Of course the Border Force staff were doing the right thing—and I am glad that they were doing it in a reasonable way—according to the existing rules, under which if a controlled drug is to be imported it needs a licence, and the import of an unlicensed controlled drug therefore requires a prescription from a specialist doctor. There are just over 95,000 registered specialist doctors in the UK. Any one of them who has the relevant experience can prescribe the drug, and it will be then allowed in. That can happen now. The guidance is not a barrier, and it is not a barrier to prescription. However, it is clear to me that this process is not working. I have therefore initiated a process evaluation, which is NHS language for looking at exactly why it is not working and what we need to do about it.

Acute NHS Care: South-west Hertfordshire

Mike Penning Excerpts

Wednesday 13th March 2019 Westminster Hall

[Sir Mike Penning (Hemel Hempstead) (Con)]

I beg to move,

That this House has considered acute NHS care in South West Herts.

It is a pleasure to serve under your chairmanship once again, Sir David. I start by saying that none of my comments about the health provision that allegedly looks after my constituents or about the West Hertfordshire Hospitals NHS Trust are, in any shape or form, about the frontline staff. The doctors, the nurses, the porters and the cleaners are fantastic. However, as I said the other day in a letter to Mr Stevens, the chief executive of NHS England, frankly we have absolutely no confidence in the management of the clinical commissioning group for West Hertfordshire Hospitals NHS Trust.

That lack of confidence that we are being represented and looked after in the best possible way has united the community over many years. It is not new. We have been let down time and again. Unlike a certain other subject that is occupying a lot of our time at the moment, there is no political or community division in west Hertfordshire about what we need from hospital acute provision in our part of the world. I will not go on about the other problems we have with health provision, but I have called the debate today—indeed, I was asked to do so by the community—to discuss how we can trust what is going on in our area.

A package is being put together that is convenient for West Hertfordshire Hospitals NHS Trust and it appears that the CCG and, I am sad to say, NHS Improvement and NHS England are going along with it. To put it in context for the Minister, we used to have acute hospitals in St Albans, in Hemel Hempstead and in Watford. Years ago, there was an evaluation and the decision was taken to close the acute facilities at St Albans. We were told not to worry, as Hemel was very close and would continue to have its acute provision, and there was a minor injuries-type facility in St Albans for elective surgery. After another consultation called “Investing In Your Health”, all the promises that had been made went out of the window and the acute services in Hemel were closed. As a sop, we were given a 24-hour urgent treatment centre.

Guess what? The urgent treatment centre is now not open for 24 hours a day and has a completely different name. Is it open at night? No, it is not. Where does everybody have to go? Even though Hemel is the largest town in Hertfordshire, we go to Watford. Watford General Hospital is a Victorian building next to the football stadium, in the heart of Watford, which is very densely populated. Promises were made about how quickly the ambulances could get there and how good it would be. They have completely gone out of the window, particularly when Watford football club is playing at home. Even though I am not a Watford supporter, I do not want to criticise the football club in any way. Watford football club is there, and has been for a long time.

Now we are looking to the future, not so much for my generation but for the younger generation in this massively growing area of the country. What is the future of the acute provision and hospital provision in my constituency? Historically, West Hertfordshire Hospitals NHS Trust is a small trust that has not been well managed. I have lost count of the number of chief executives it has had during the time I have been MP for Hemel Hempstead. They come and go repeatedly. What always happens—every time—is that the trust gets into deficit, and it is then bailed out in some way. That happened when there were primary care trusts, and now it is being done with the clinical commissioning groups. The trust is in deficit and failing. I do not know how it managed to get something positive into the newspaper the other day, when yet again it is failing in four out of five categories.

That means my constituents are at risk. We rely on the CCG and the trust. I will come on to our involvement in that process in a second, but it appears that as an elected Member of Parliament I have absolutely no influence at all on the CCG’s decisions, West Hertfordshire Hospitals NHS Trust decisions or decisions about any other NHS provision in my area. Joe Public does not understand that there are a myriad pillars and silos inside the NHS. The public just sees the NHS, which people are rightly massively proud of; we all are, including me, and it is fantastic that we are putting more money into it. However, we have got more managers, finance directors and heads of nursing. Why on earth have we got all these people divided up inside the NHS? That is an important point I will come on to.

Part of the appraisals and discussions for the strategic outline case—the Minister will know what I mean by a SOC—was about making decisions on what acute hospital provision should be provided in my constituency. I went with constituents to see Mr Mackey, the head of NHS Improvement. I said to him, “What are the criteria here? Tell me, face to face, what are the criteria for the decision that the West Herts hospital trust is going to make about the future?” He said, quite categorically, that fundamentally different options must be put to us. I asked, “Including a greenfield site?” We have greenfield sites available. He said yes. I received a letter of confirmation that that was a requirement of any SOC that was put forward.

Moving forward to where we are now, we apparently cannot have a new greenfield hospital. Why? That is the question that every one of my constituents asks. It would not necessarily be in the middle of Hemel, St Albans or Watford, but somewhere where there is decent access and transport links for the whole community. We cannot have that. Why not? We are not allowed to borrow more than our income. Because we are a very small trust, the income happens to be £350 million. We cannot borrow more than that. Why? Why do my constituents suffer because we have a small, inefficient, badly managed acute trust?

If we amalgamated with another trust, the income stream would probably be about £500 million, or we could amalgamate with another acute trust and double the income to £700 million. All of a sudden, we get somewhere near the fictitious figure of £750 million, which keeps coming up for how much it would cost to build a new acute hospital. The figure of £750 million is why the trust is ruling out new build at the moment. I am not aware of any new hospitals in this country—leaving aside private finance initiative problems that we had in the past under the previous Administration—that cost £750 million. Interestingly, one of my constituents recently emailed me about the new hospital in Birmingham, which was being built by Carillion—we all know about that problem—that is costing £300 to £350 million. The new hospital in Liverpool is costing about £350 million. These are brand new hospitals, which is exactly what I am asking for and certainly what my constituents are united in wanting.

Where has the figure of £750 million come from? It is being used as part of a narrative to block any new acute hospital in my constituency, which would also look after people in St Albans and Watford. In my area, we seem to be fixated on the idea that the only way to use that £350 million is, believe it or not, to plough it into the Victorian hospital in middle of Watford. There are supposed to be evaluation panels, with the community engaged.

The community evaluation panel sat, and some of the members said, “Could we not have on the list a new hospital on a greenfield site?” There was no request for a show of hands, or vote. It just went forward; but it appears it has been completely ignored. The boards of both the West Hertfordshire hospitals trust and the CCG have disregarded it. It is all too expensive. We know, however, that it is not too expensive. Other parts of the country have an open mind, not a closed mind. They are not the same people who closed our hospitals in the past, making the same decisions on the future of Watford hospital.

I have concerns for the people of Watford—the patients of Watford hospital—and the staff. I am concerned about stripping out and fundamentally refurbishing what is a predominantly Victorian hospital, which was massively refurbished in the 1960s and 1970s. How can a full acute hospital continue to operate while that is going on—with all the risks? I have recently written—my old ministerial role was in the relevant Department—to the head of the Health and Safety Executive, because we know there is asbestos in the building. It is fundamentally dangerous, and it is not just because of asbestos, although that is the most prominent issue, and something that can have a massive effect. A tiny fibre in the lung is a death sentence. We know it is there, but we do not understand why the figure of £750 million has been used, and why the figure of £350 million is trapping my constituents in a certain quality of care, simply because we happen to be small and badly managed—not just by the present management but over many years.

Why are we being penalised? That is how we feel, as a community, across political divides—across everything. Labour were massively involved with the problem long before we took over in Government. Why does not NHS England say: “This trust is failing again. It is not big enough. It cannot cope. Let us sort it, management-wise, and bring trusts together.” Then we would go over the £350 million income stream figure, up into the £500 millions. Strangely, £500 million was the figure for what has just been built in Leeds. It seems strange that for Hertfordshire’s largest town, and one of its most historic towns, St Albans, which have massively growing populations, Watford is the option. I do not want to take anything away from Watford until there is a new build. I do not want to take anything from it that will undermine what it has—unlike what happened to us. However, perhaps the Minister would like to come to Watford when Watford football club is playing at home—or even just during the rush hour. He will have a very different experience coming from Hemel or St Albans from the one he would have coming from any other part of Hertfordshire. It is chock-a-block.

I want to touch on a final thing before I hand over to the Minister, because I want him to have time to respond. I have already asked him not just to read out what has come from the trust. I know, having been a Minister, exactly what happens. An MP asks for a debate, the Department writes to the CCG, the CCG speaks to West Herts, and the speech is halfway written before the Minister has even got to Westminster. I ask him please to listen. We are passionate people and are not going to give up. Some people in the campaign group for the new hospital have been working on it year after year. I want to pay tribute to Zena Bullimore, who sadly passed away, and who was chairman of the hospital campaign, and to Edie and Ron Glatter—Professor Glatter. Even though they have been retired for some time, they are a driving force behind the campaign that I was part of long before I was elected. That is how far we go back.

I have some anecdotal evidence to show how wrong it is even to contemplate going further with Watford, instead of getting a hospital out of Watford in a suitable place. One of my constituents had a heart attack and the ambulance arrived in good time. The paramedics did a wonderful job and she was taken to Watford. The ambulance was turned away by the police from the fastest route to accident and emergency. The police had a cordon up so that the fans could use the streets, so it had to go another way, at which stage the non-local ambulance driver got lost. I went to see the officer in charge of the football match and said, “Did you turn the blue light ambulance away?” He said, “I can’t quite—”. I said, “Let’s do another one. Would you have turned away the blue light ambulance that was trying to get to the A&E because you had a cordon up?” He said, “Yes, I would.” I said to him, “If one of your officers had been assaulted and stabbed, would you have let the blue light ambulance in to pick him up?” “Yes, of course I would.” What is the difference between my constituents and the police? I want the police protected, and he would have been absolutely right to let the blue light in. However, the Department and NHS England seem to have tunnel vision about the situation.

I had a response in the last couple of days to a letter I sent to NHS Improvement—to Mr Stevens, actually—saying, “Would you please analyse this very in-depth document that goes into five pages, and give us your opinions?” I got, apart from the signature, one piece of A4 back, which in my opinion was written by the West Hertfordshire hospital trust. If it did not write it, it contains all the same language—probably the same language that is in the Minister’s notes. We have to open up to the fact that there must be accountability in the NHS. It is right that Ministers do not these days make decisions in the way they used to, but things have gone too far. There are people running CCGs who are not qualified to do so. I do not think that a GP is highly qualified to chair and run such a trust.

My acute trust has to make a fundamentally important decision, based on fact, but it is ignoring fact—not just public opinion or “This is the best place for it”, but fact. They keep going on about “You can’t afford it. It will be over £350 million. It will cost £750 million.” Frankly that is a pack of lies and we need to wake up. As I said the other day among colleagues, “Wake up and smell the coffee.” The public will not put up with a second-rate management system in the NHS. It is affecting my constituents—and I class myself as a member of the public. I live in the middle of the town. I am not going to put up with a second-rate system of management, and incompetence in running a trust.

I shall probably ask to intervene on the Minister during his speech.

[The Minister for Health (Stephen Hammond)]

It is a pleasure to serve under your chairmanship, Sir David, and to respond to my right hon. Friend. I want to say at the outset that one thing we absolutely agree on is what he said in his opening remarks. He expressed, in bringing forward this important matter for debate on behalf of his constituents, recognition of and admiration for the frontline staff. Even though I do not know the frontline staff in his area, I know from my visits in my short time as Minister and from my constituency experience that the professional care they deliver is admirable and extraordinary. We should never forget the effort they put in, and my right hon. Friend is right to acknowledge that.

Before I address specifics, and before what I suspect will be an iterative debate, I want to deal with two fundamental points, which I know my right hon. Friend knows, but are worth putting on the record. First, any service change in the NHS must clearly be based on clear evidence. Secondly, before any substantive change is made, patients and the public should be consulted. My right hon. Friend raised two interesting subjects on which we could have a debate of an hour and a half, or probably even three hours. One was local accountability in the NHS, in its wider sense and form, and how he is accountable as the Member of Parliament. The other was funding criteria.

My right hon. Friend has, I think, addressed two other Ministers on his passion for the longstanding need to improve the quality of hospital infrastructure in west Hertfordshire. That has been a stated aim of the Hertfordshire and West Essex sustainability and transformation plan since its inception. I know it is engaging in the process of looking at how a redevelopment and redesign of the hospital provision in west Hertfordshire can be achieved, working alongside NHS England and NHS Improvement.

I recognise that my right hon. Friend has real concerns and real scepticism about the work of the CCG. I hope he will recognise the work that the sustainability and transformation partnership is involved in in the hospital development process, and the fact that the director of strategy took part in a process and evaluation meeting in February 2019, at which a shortlist of our options was discussed. The STP is also due to take part in the next evaluation event.

I understand what my right hon. Friend says about the capital. I hear his criticism and scepticism of the West Hertfordshire hospitals trust, but it has been taking the lead in developing the strategic outline case for change. I understand that it and NHS Improvement had dialogue, and feedback was provided on the strategic outline case for the acute hospital redesign submitted by the trust. I also understand, as he will, that the feedback made two key points: it was clear, first, about the need for funding, and secondly, that the overall public money for hospital redevelopment is relatively limited.

My right hon. Friend has raised the issue of the £350 million; he knows that the turnover figure is a key criterion and a key threshold for capital investment, and that any options that significantly exceed the £350 million capital cost have been excluded from the current shortlist. He is obviously aware of a £750 million figure being used locally, but I must confess I am not aware of that figure. I would be delighted to offer him a chance to sit down and try to work out with me where that figure came in—recognising, as he rightly points out, that it will not be a Minister who makes any decision. If it is helpful to him, I am happy to have that discussion.

[Sir Mike Penning]

I had that discussion with the Secretary of State, a couple of days after he was appointed. It is not just Ministers that I pick on—Secretaries of State get it in the ear as well. There are two points I would like to touch on. First, how can it be fair to a community that, if it is just based on the turnover of a trust and that trust happens to be a very small one, the provision we get locally is second class? We cannot even go to that territory. Secondly, on the £750 million, I will ask the Minister to step in, because that is the figure being used locally to rule out the greenfield site. There was an evaluation panel, and members of the panel asked for the greenfield site to be put in, and fundamentally, it appears to me, they have been completely ignored.

[Stephen Hammond]

I made the point a moment ago that, because the cost of that greenfield site exceeds the £350 million threshold, it has currently been dropped from the shortlist of options. My right hon. Friend repeats a point that he made during his speech, questioning the criteria; he will know that I have heard what he has said. As he has just informed me, he has made a representation to the Secretary of State about that figure, and I have offered to have a meeting with him so that we can both explore it.

I do not think that, in the relatively short time available, I should get into the debate about the loan criteria, as I said at the beginning. We can have that debate at some other stage if my right hon. Friend wishes to put it forward, but he knows that at the moment the key threshold for capital investment would be the turnover, and therefore options that significantly exceed a £350 million capital cost have been excluded. As part of the option appraisal process, senior leaders and clinicians, as well as expert analysts, were involved in information gathering to put together the option evaluation. He will know that that included demand and capacity analysis based on population, hospital activity and operational planning.

With regard to reviewing that process, my right hon. Friend, as he said, wrote to both NHS England and NHS Improvement concerning the approval process. As he referenced in his speech, he forwarded to them an email from Professor Ron Glatter of the New Hospital Campaign. I understand that in that email, the professor requested a full statement of the outcomes of NHS Improvement’s review of the trust’s acute transformation strategic outline case.

In its answer, NHS Improvement has so far said that it has not started its formal review because the Treasury and the Department have not yet decided whether the proposal represents a scheme that can in principle be supported by central Government. I recognise the strength and effort of the campaigning for the new hospital option and I acknowledge the expert views that have been sought. While it is obviously not right for me to prejudge the answer from NHS Improvement, I know my right hon. Friend will recognise that I and the Department must take a wider view and that decisions made on capital funding must be the same for everyone across the country.

There has clearly been a huge amount of public engagement throughout the process, and I understand that further public engagement is planned for this month. Notwithstanding my right hon. Friend’s scepticism, I understand that the results of those consultations, in terms of the preferred way forward, will be taken to the trust board and the CCG in June 2019.

I recognise my right hon. Friend’s commitment to improving services; I assure him that the information provided by the New Hospital Campaign is being considered and will be considered as part of the review. As I said, it is not appropriate for Ministers to comment on specific decisions but, as he knows, the Government are determined to encourage innovation and to ensure that all patients have access to high-quality services. The updated proposal will clearly help to inform both the Department and the Treasury about capital allocations in the next spending review. I will not rehearse the arguments about the extra £33.9 billion of cash to support the NHS, or the additional capital and the bid we are putting forward in the comprehensive spending review.

[Sir Mike Penning]

If we accept that the rules at the moment are that any bid cannot be over the revenue income, which is the £350 million, can the Minister explain to me why, in Birmingham, the new build for 750,000 people cost between £300 million and £350 million, which we know because of the Carillion contract that collapsed, and the Royal Liverpool cost £335 million, yet we have been ruled out of having any new build on land that is actually owned by us—one of the sites is on Crown Estate land, public land—because it would exceed £350 million? I know he probably will not have the ability to answer that this second, but a letter in the next few weeks would be very helpful.

[Stephen Hammond]

As my right hon. Friend knows, all Ministers can make an attempt at an answer, but I am sure he would prefer a detailed answer. Therefore, I will make that detailed response to him, as he has asked, in a letter. I also know that he would like me to commit to the spending now, but he will know that I am unable to do so at this stage. I have listened carefully to his points about what might be the cost of the redevelopment that he believes should happen, and he will know that I have heard that. He will also know that I have heard the differences that he has pointed out between the supposed or quoted cost and the cost of build in other areas. He knows that I will have taken that on board.

At this stage, with just 30 seconds to go, I thank my right hon. Friend for bringing this matter to the Chamber and for making the case yet again for his constituents. He should know that the Minister and the Department have listened, and I will respond to him and have that meeting with him.

[Sir Mike Penning]

rose—

[Sir David Crausby (in the Chair)]

Order; I do not think we have time, Sir Mike. There is no right to sum up in a half-hour debate.

Question put and agreed to.

Diabetes: Artificial Pancreas

Mike Penning Excerpts

Wednesday 12th December 2018 Commons Chamber

[Mr Howarth]

The common-sense approach is to look at what is going on elsewhere—in Scotland and in other parts of the world—to get the best of what is available and use it in the most effective way. My hon. Friend is quite right about that.

It is pointless giving type 1 diabetics the latest technologies, such as an artificial pancreas system, if they are not given structured education to support them to use the technology that is available. The limited uptake of educational programmes is a matter of great concern, and I hope the Minister shares that concern. Despite guidance from the National Institute for Health and Care Excellence, in 2014-15 only 2% of people newly diagnosed with type 1 diabetes were recorded as having attended structured education courses. For some, that lack of knowledge of the key principles of self-management is a major barrier to the use of technology, because without sufficient education, type 1 diabetics are not equipped to get the best results from the technology available.

[Sir Mike Penning (Hemel Hempstead) (Con)]

This is a very important debate and I am pleased we have time to listen to it. I will have to go and listen to my leader at 5 o’clock, so I apologise if I leave in the middle of the debate. With type 1 and type 2 diabetes, it is crucial to diagnose as early as possible. With type 1, which is very different from type 2, it is possible to diagnose very early on in the life of that person. Perhaps the right hon. Gentleman will allude to the differences between lifestyle issues and something that a person normally has when they are born. Surely the answer is testing early, so people can find out and have their educational needs met, and hopefully the product can be available across this great nation of ours.

[Mr Howarth]

I am glad that the right hon. Gentleman, who has a background in these matters, has drawn attention to the distinction between type 1 and type 2 diabetes. That is not to say that one is superior to the other, but they are two entirely different conditions brought about by entirely different circumstances. As I said in opening my speech, type 1 diabetes is an auto-immune condition. Nobody is entirely sure what triggers it in some people, but those in whom it is triggered have some predisposition towards the condition.

--- Later in debate ---

[Mr Howarth]

Yes. I pay tribute to my right hon. Friend, who does a massive amount of work as chair of the all-party group on diabetes. He is very knowledgeable on the subject and the issues involved, and he is of course right. I think I had already said more or less the same thing as he just said, but obviously I agree with myself and with my right hon. Friend.

Let me move on to the digital solutions, such as apps, which could offer platforms to deliver education in a convenient and personalised format. I should add the rider that mobile apps need to be safe, reliable and accredited to be clinically safe. It worries me that some apps out there are produced commercially but do not contain wholly accurate information. It is unsafe to rely on apps that are not properly accredited and that have not been assessed and evaluated by experts who know what they are talking about.

In addition to the low uptake of structured education, the number of specialists working in diabetes care is falling. Between 2010 and 2012, there was a 3% fall in the number of NHS sites that employ any diabetes specialist nurses. Anyone who has any experience of dealing with young people with diabetes will know that nurse specialists are often the very best possible source of advice.

In the light of this shortage, a national network of centres—possibly between eight and 10 expert diabetes technology centres, supported by virtual clinics—could well be a potential platform for the development of more effective structured education for patients, and for professionals as well. I shall say more about that in a moment. Such a network would be helpful for training future generations of diabetes clinicians effectively to provide artificial pancreases, and in the development and evaluation of new technologies.

One of the problems that type 1 diabetes sufferers tell me that they experience is the merry-go-round of different services that they have to access. They may have a problem with neuropathy, or a foot or eye problem, but they cannot access all those services in one place. Many diabetologists, although brilliant at dealing with the diabetes side of the problem, are not equipped to deal with young people who have, for example, psychological problems. All the services need to be better integrated.

[Sir Mike Penning]

I do apologise, Madam Deputy Speaker, but I will have to slip away straight after this intervention.

One group of people the right hon. Gentleman missed out, although it was not intentional, was parents. When a child is diagnosed with type 1 diabetes, there is a journey for the parents as well as the child, so there needs to be support for them. I completely agree with the right hon. Gentleman that diabetes does not pick on certain people from certain areas; it just picks on an individual. Sometimes it is hereditary—a lot of work is being done around the hereditary route—but it is not a choice; it is something that comes on to the family, rather than just the individual.

[Mr Howarth]

The right hon. Gentleman is right, and it was an omission on my part not to have acknowledged that. Any parent of a diabetic child has to experience the disease—at second hand, but in very important ways. The younger the child, the more responsibility parents have to take, so that is important. By the way, training and other support for parents needs to be built into the system.

Access to Orkambi

Mike Penning Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Lewis]

I think that, in this context, we can all unite behind the concept that we want a resolution that is UK-wide if at all possible. Clearly, that would require different organisations to be involved, but if we can set a precedent here, we could make rapid progress, and that can only help all parts of the United Kingdom. May I make some progress, and then I will give way to other hon. Members?

All of us who have the privilege of serving in this House are mothers or fathers, brothers or sisters, grandparents, uncles or aunts, godparents, friends or neighbours. It could very easily be one of our family members or friends who is diagnosed with cystic fibrosis at birth and who struggles with a life of perpetual illness, frequent hospitalisation and a daily multitude of drugs. Worse still, they could be living with the fear of premature death at an age when many young people are getting married, starting a family or taking their career to a new level.

I ask hon. Members to imagine that their family member or friend was denied access to a drug that could improve their quality of life and prolong their life for many years—a drug that was readily available in 12 other countries. No one in this Chamber today would accept no for an answer, or remain silent as the NHS and a major drugs company traded increasingly public blows as to who is to blame for unnecessary suffering and potential loss of life. If the situation is not good enough for our loved ones, it should not be good enough for anybody else’s.

I first became aware of Orkambi when a young constituent from Prestwich attended my constituency surgery with her mother. Many Members will have met constituents in a similar situation. Alex Darkin is 10 years old and suffers from cystic fibrosis. She is a remarkable girl, whose courage and positivity are truly inspirational. Alex started this year with 80% lung function—a number that scared her mother, Emma, because Alex’s lung function was over 100% a few months previously. These days, Emma would give anything to see the number 80 again. Alex’s lung function continues to drop and is now around the 54% to 56% mark.

Alex has physio and takes a large amount of medication just to manage her condition. She brought all that medication to my surgery and I found myself looking at a young person who has to go through the routine of taking that medication every day; that, in itself, is a massive challenge. Alex has intravenous antibiotics every three months, and her daily life is inevitably dominated by her drug and physiotherapy regime. Very sadly, she now has irreparable lung damage. A consultant recently advised that doctors are running out of options with regard to medication, and explained that if Alex were a year older her parents would be able to apply for Orkambi on compassionate grounds, as her lung function had deteriorated more than 25% in less than three months. Emma and Alex contacted me because they could not afford to wait another year to get this drug on compassionate grounds. Surely a truly compassionate society would ensure that this drug was available to all who needed it.

[Sir Mike Penning (Hemel Hempstead) (Con)]

I congratulate the hon. Gentleman on securing this debate. I think that we all tried to get this debate, which is why we are all here. One of the reasons I said to Mr Speaker earlier that I was not happy was that I wanted us to get on to this debate. We have all heard stories in our constituencies, as I am sure you have, Madam Deputy Speaker. As a country of this wealth, we should be ashamed. People in countries with nowhere near the wealth of this country have been given these drugs to improve their quality of life. We are here to right that shame.

[Mr Lewis]

The right hon. Gentleman speaks for everybody present this evening and probably many who are not.

There is inevitably sadness, but there should be real anger because this situation is causing human misery to many people who have enough challenges in their lives without not being able to resolve this situation. It would not be right for any of us to pretend that these decisions are easy. NICE does a good job in very challenging circumstances, on the whole. In no way should we or do we seek to undermine its work.

--- Later in debate ---

[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.