Children’s Cancer Care: South-East

Paul Scully Excerpts

Wednesday 13th March 2024 Westminster Hall

[Sarah Olney (Richmond Park) (LD)]

It is a pleasure to serve under your chairmanship, Sir Christopher. Thank you very much for giving me time to speak; I will not detain hon. Members long.

I congratulate my constituency neighbour and hon. Friend the Member for Twickenham (Munira Wilson) on securing this important and extremely timely debate. As she has already highlighted, the Evelina is an excellent facility and I commend the incredible work its doctors do every day. I do, however, share her view that the weight of evidence shows that St George’s Hospital would be a better home for paediatric cancer care in south London and the surrounding counties. I had an excellent experience of in-patient paediatric care there when my daughter was in the Frederick Hewitt Ward for a short period last year. I can confirm that the paediatric care there is excellent, and I would like to say to the hon. Member for Mole Valley (Sir Paul Beresford) that I had no problems with parking any of the times I visited my daughter.

One of the less well-known but most dangerous side effects of cancer treatment is the extreme increase in patients’ susceptibility to bacterial and viral infections. While most children with cancer are able to overcome minor infections, the mortality rate from infection is three times higher in cancer patients than in the general public. Because of that risk, many children living with cancer cannot take public transport or even smaller private hire vehicles. In the most extreme cases, visitors and carers are expected to shield so that they do not bring a risk of infection. Travelling by car is the only option available to many of these young people and their families. As such, any plan to bring paediatric cancer treatment in south London and the surrounding counties under one roof must ensure that certain patients can access the hospital safely.

The point was driven home to me when one of my constituents contacted my office after her daughter was diagnosed with Hodgkin’s lymphoma. During the six months that her daughter received chemotherapy and radiotherapy at University College Hospital, they had to travel from Richmond to the hospital in Euston several times a week for her to receive treatment. Due to the very limited parking at the hospital, and the need to avoid public transport because of the risk of infection, the family were forced to hire taxis to make the journey. Each round trip cost the family close to £100. That is not a unique situation.

On average, the families of children with cancer have to spend £250 and travel 350 miles each month to get their specialist treatment. Three in four struggle to meet those costs, and one in 10 miss or delay their treatment because of the expense. St George’s Hospital has two visitor car parks, and it has presented a plan to create a series of dedicated parking spaces and drop-off zones for the families of children with cancer. [Interruption.]

[Paul Scully (Sutton and Cheam) (Con)]

rose—

[Sir Christopher Chope (in the Chair)]

Order. We now have another Division in the House. I put on the record the fact that the Minister has profusely apologised for her absence; she was misled on whether there was going to be a gap between the Divisions. There was a gap, and although we have exploited it as much as we could, it is now time to suspend the sitting again. I am told that there will be two more Divisions, so it will be suspended for another 25 minutes. That means we will start again at 6.27 pm.

--- Later in debate ---

[Sarah Olney]

Thank you, Sir Christopher. I was on the verge of taking an intervention.

[Paul Scully]

The hon. Lady was talking about transport. Yes, the Evelina has amazing facilities, and parents can stay in Ronald McDonald House just opposite. However, the point is that it is easier to get to Tooting by car none the less, especially for people coming from outside London. Patient transport to the Evelina from Brighton takes more time to get into London from the outskirts than from Brighton to the outskirts of London in the first place.

[Sarah Olney]

The hon. Gentleman is absolutely right.

Oral Answers to Questions

Paul Scully Excerpts

Tuesday 29th October 2019 Commons Chamber

[Edward Argar]

The Government’s commitment is clear. While no Government can bind a future Government, our commitment is very clear, so my advice to the right hon. Gentleman’s constituents is to vote Conservative.

[Paul Scully (Sutton and Cheam) (Con)]

I would like to correct the record, in that my predecessor, Paul Burstow, mentioned before the 2015 election that he regretted the withdrawal of that money.

Does the Minister agree that, in giving us the money that we need for the Epsom and St Helier Trust, it is right to reward a plan that finally will save St Helier without using it as a political football and will improve health outcomes in a brand-new building that we can be proud to have in Sutton?

[Edward Argar]

My hon. Friend is a doughty champion for his constituents and his trust, and he is absolutely right.

Cystic Fibrosis Drugs: Orkambi

Paul Scully Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully (Sutton and Cheam) (Con)]

I beg to move,

That this House has considered e-petition 231602 relating to access to Orkambi and other drugs for people with cystic fibrosis.

It is a pleasure to serve under your chairmanship, Mr Bailey. I will read the petition, if I may:

“Children & young adults with CF endure lifelong suffering & early death. They need Orkambi and other precision medicines as they are developed. Sufferers in the EU, US & Australia can access the drugs, but not the UK. Hundreds have died in the 3 years since these drugs were licensed. All MPs who debated the petition in March were passionately in favour of supplying the drugs. Despite an ever-increasing abundance of evidence as to the drugs’ effectiveness, CF sufferers still do not have access. Case studies report miraculous improvements in health. Consultants nationwide have asked the NHS to make the drugs available. Doctors have expressed distress at seeing children die whilst the drug they need is on the shelf. After 3 years, conclude negotiations and fund these drugs.”

I pay tribute to Catherine Meredith, who started the petition, and the 108,144 people who had signed it as of this morning. Many hon. Members present are here because of their constituents and their long-lasting championing of cystic fibrosis treatment and the need to get these drugs to market as soon as possible.

Cystic fibrosis is a severe, devastating and progressive disease. It is a genetic disease, so we know the exact number of people living with it—70,000 around the world. It is considered by many to be a Celtic disease; the UK has 12% of all sufferers, which makes it an important place for research and an important market for pharmaceutical companies, such as Vertex, that have been working on treatment.

[Alberto Costa (South Leicestershire) (Con)]

I congratulate my hon. Friend on securing a clearly important debate. If Orkambi were available on the NHS, my constituent Amelie-Rose Sullivan, who is only two years old, would be able to take that life-saving medicine. Having spoken with her family, I understand that she has needed antibiotics on five occasions, which involves a two-week course each time—a cost to the NHS. Antibiotics might not have been needed if she were taking Orkambi, which underlines the need for Orkambi to be available. Ultimately, it would be better value for the taxpayer and our constituents.

[Paul Scully]

My hon. Friend is absolutely right. Before I led a similar debate for the Petitions Committee roughly this time last year, I went to the Cystic Fibrosis Trust, as I did this morning, where I met and spoke to a lot of parents whose children are suffering, as he has mentioned. This morning, I met a number of adult sufferers, who I will speak further about in a minute. One of them, who is 43, described the disease—this is harsh, especially for any sufferers watching—as his lungs filling up and effectively drowning. That is pertinent to me, because my father died of mesothelioma 30 years ago, after a year of suffering. This man is 43; I cannot imagine that suffering. Early treatment for children, however, stops that build-up in the first place and allows them to keep their lung capacity higher for longer, so they can have a proper standard of living.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I suspect that my fellow Petitions Committee member shares my concern that families are being put in the terrible position of having not only to deal with a devastating illness and diagnosis, but fight for a treatment that they know is available and that other people across Europe and across the world are receiving. Whether it is cystic fibrosis, Batten disease or phenylketonuria, or PKU, it is wrong that families are wasting their precious energy, which they would like to channel into looking after their children, into fighting for a treatment that could solve many of those medical issues.

[Paul Scully]

I totally agree with the hon. Lady. It is frustrating to look at access around the world; there is even an interim solution in Scotland. It would be interesting to hear from the Minister about how that may pan out. Scotland has given interim access, including for compassionate use, and further access to some sufferers who can use Orkambi with a view to reporting back in August.

It is disappointing to find that people living with CF, in their ingenuity, have had to resort to looking at a buyers’ club. The Vertex drug is patent pending in Argentina, so another company is making a copy that can be sourced for £18,000 a patient—still a lot of money—rather than £104,000. That £18,000 comes out of their pockets, however, which defeats the idea of the NHS being free at the point of need.

[Mark Tami (Alyn and Deeside) (Lab)]

It is bad enough if a child is suffering with an illness for which there are no medicines to help, but it is incredibly cruel for the patient and the family when they know there is a drug that can help their child.

[Paul Scully]

There are clearly two sides to the negotiations. The NHS has to understand that CF sufferers are not just names on a spreadsheet; they are real people. We are all here as politicians to represent our constituents, but we are humans first and politicians second. We have to remember the humanity. On the other side of the negotiations, Vertex needs to make sure that these patients—the people living with CF—are not just names on a shareholder report.

[John Spellar (Warley) (Lab)]

I thank the hon. Gentleman for his comprehensive introduction. The fundamental core of the problem is the greed of Vertex and its unreasonableness in the discussions. Should the Government not play a much stronger role in dealing with the issue of generics? That is the demand of those who are suffering, such as my constituent Nicola Johnson and her son George, whose capacity is steadily reducing. The Government need to get a move on with that alternative route.

[Paul Scully]

The right hon. Gentleman is right to say that Vertex has to be reasonable, because the UK is effectively the biggest market for a pharma company that comes in to tackle CF, for the reasons that I have mentioned. It has to understand that the issue is not all about its share price in the long term. As a free-market liberal economist, I recognise that private companies must be allowed to deliver fair profits for their shareholders, which will further research and future investment, but they are sailing close to the wind if they are profiteering from human suffering.

[Crispin Blunt (Reigate) (Con)]

I am grateful to my hon. Friend for leading the debate. I spoke in the previous debate on the subject in the main Chamber. It is right to focus on Orkambi and Vertex, but the issue is actually the process of the National Institute for Health and Care Excellence. If we cannot assess issues such as antimicrobial resistance and new antibiotics in the NICE system, or get a positive answer about them, we need to look at its assessment. I hope the Minister is open to that.

[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.

[Janet Daby (Lewisham East) (Lab)]

I thank the hon. Gentleman for giving us such a comprehensive overview of cystic fibrosis. A constituent of mine, Joanne, has contacted me regarding her daughter Lauren, who suffers from cystic fibrosis. Access to treatments such as Orkambi, which has already been mentioned, would be absolutely crucial to managing hers and so many other people’s conditions in our country. Hon. Members might know that 16 May marks a year since the Prime Minister called for a speedy resolution to this issue. Does the hon. Gentleman agree that we need to hear the actions that the Government can take, and are taking, to open up access to these lifesaving treatments for people such as Lauren in my constituency?

[Paul Scully]

One of the reasons why NICE was set up in the first place was to take politics out of drug development. We need to ensure that we have the balance right between the Government intervening and the clinicians—the people who can make their assessments without political interference—making their decision. None the less, we clearly must have a view.

One of the things that some people have suggested—I think it was intimated in an earlier intervention—is Crown use of patents, to allow the use of generic drugs and effectively remove patents from pharmaceutical companies. Obviously, that is in extremis. There is an inherent problem with the potential lack of investment in future research, should we start taking away patents from private companies.

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

The hon. Gentleman is making a very powerful speech, and I stand here today representing my constituents. Does he agree that when factoring in costs, NICE should also factor in the ongoing costs that not treating cystic fibrosis will bring? It needs to factor in the cost of the additional mental health treatment and other health treatments that will be needed, and possibly even the cost of lung transplants. This is not a simple comparison with the cost of treatment; other things need to be taken into account.

[Paul Scully]

The hon. Lady has hit on a really crucial point. The underlying thing that I took away from my meeting with the people living with CF this morning was mental health, which ran through all their situations.

I heard from Oli Rayner, who talked about the fact that he is 43 and has dedicated his whole life to staying alive; he had effectively been told that he would not make 10 years. He was then told that he would not make 20, then 30. This is a guy who has now got cystic fibrosis-related diabetes and a number of other conditions. He has had a lung transplant, and he had Orkambi to get him to that stage. The fact is that his lungs are now doing what he wants them to do, without his having to think about it. We can imagine the mental issues that he had before.

Jessica Jones told me that people with CF are very good at living. Yvonne Hughes said she felt broken. One lady, Carly Beale, told me that she had been on the original Orkambi trial. The NHS had not prepared her for when Orkambi stopped at the end of the trial. She had suddenly improved and started to get her life back—perhaps a life that she had not had in the first place—and she was not ready to have it taken away from her. She said that it is almost worse that this drug exists but she cannot get access to it. She said, “I’d rather it didn’t exist than have it dangled in front of me in expectation.”

[Kerry McCarthy (Bristol East) (Lab)]

I am really pleased that there is now cross-party working on this issue. Life expectancy is a very sensitive issue for cystic fibrosis patients and their parents. I am aware that Conservative MPs have been sending round a letter that points out—as if the letter’s recipients ought to be grateful—that life expectancy for CF patients has now increased to 40, although I think it is more like 31. It seems a little insensitive, and I hope that MPs present would report that back.

[Paul Scully]

It is an unfortunate manner of phrasing. There is no doubt about the fact that median life expectancy has increased. For someone born now, the projection is that they are likely to have a median life expectancy of 47. It is clearly an improvement, and hopefully these drugs will carry on extending that. It is a matter of wording, and I do not think any offence was intended.

[Andrew Griffiths (Burton) (Con)]

I think my hon. Friend will win this year’s prize for taking the most interventions in a debate, such is the level of interest in this debate. I know the Minister will have taken note of the cross-party interest, and I hope that Vertex is also taking note of just how much interest there is among Members of Parliament.

I am here today because Elaine and Chris Colborne came to see about their three-year-old grandchildren, James and Alex. Although it is terrible for any parent—I am one myself—to see their child suffering, it is even worse for a grandparent in some respects. They see the little child suffering, and they also see the anguish of their child—the parent who on a day-by-day basis has to live with the consequences and the pain that comes from CF. This is a hugely important debate and we agree that it is not just about Orkambi; it is actually about the pipeline of other drugs that are coming through. Even if we were to solve the problem with Orkambi, we might be in a situation in which new drugs come forward in the future. We need to tackle the issue, not just this particular drug.

[Paul Scully]

My hon. Friend is absolutely right to say that we are looking at that pipeline, which is so important. That is why this process is different from the kind that NICE is used to. I hope that NICE can be accommodating enough to suit the pipeline, and that Vertex can come back with its triple therapy, which will help so many people.

[Mr Ranil Jayawardena (North East Hampshire) (Con)]

I congratulate my hon. Friend on opening this important debate. Although we can get hung up on process, NICE, NHS England and, dare I say it, Her Majesty’s Government, is it not true that real people’s lives are at the heart of this? As I understand it, Vertex has been offered the most generous settlement in the entire history of the NHS. Is it not time that the company now took the brave decision to accept a very generous deal?

[Paul Scully]

My hon. Friend is absolutely right. Vertex has a pipeline that should help its shares—their value has doubled over the past few years, and I am sure they will do very well in future—but we must have a balance with shareholder value, so that the company can continue to invest and continue its research. As he says, this is about human beings, their quality of life and their lives.

[Ian Paisley (North Antrim) (DUP)]

The hon. Gentleman has struck a chord with the points that he has raised, which have been heard by Members of different parties. We must also make this cross-channel, and Northern Ireland cannot be left out of this arrangement. I know the chief medical officer has been in discussions with NICE and the Department to ensure that no postcode in the whole of the United Kingdom is left out of a settlement in this matter.

[Paul Scully]

The hon. Gentleman is absolutely right. Northern Ireland must surely be in there too.

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

This debate is primarily about the availability of Orkambi in England. The 540 of my constituents who signed the petition and Rebecka and Matthew Bow, who contacted me on behalf of their daughter, Sofia, are really keen to see progress in Wales. Does the hon. Gentleman agree that it is important for health across the UK that we work together to ensure that there is a co-ordinated approach with Vertex to make Orkambi available right across the United Kingdom?

[Paul Scully]

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

[James Frith (Bury North) (Lab)]

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

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

[Paul Scully]

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

[Anneliese Dodds (Oxford East) (Lab/Co-op)]

rose—

[Paul Scully]

I will make two more points about mental health, and then I will let someone else intervene.

As I said earlier, Oli Rayner said that he effectively spent 10 years preparing to die. He even cold-called a vicar to plan his own funeral. He is now 43 and has a relatively clean bill of health after having a lung transplant. It is outrageous that he had to do that.

I want to raise with the Minister the case of Carlie Pleasant, who ironically works for the NHS. She has CF and has had to go to the hospital a number of times. Her HR manager has told her that she has had too many days off sick, and that she has reached the trigger point. Basically, she has been told that she may be able to make up for it if she is not off for the next couple of months. She has a husband and a young child, she is running a home and she is trying to keep her job and pay her mortgage. How much pressure does that put on her mental health?

There must be thousands of sufferers in a similar situation across the country. We are talking about a life-saving, quality-of-life drug. When we, and especially the Government, try to ensure parity of esteem between mental and physical health, we must all ensure that that balance is reflected not just by treatments but by everybody in the health system and every employer.

[Anneliese Dodds]

I am very grateful indeed to the hon. Gentleman for giving way. He is making a very persuasive case, and it is obviously supported by many of us. Returning briefly to his point about buyers’ clubs, he will be aware that many sufferers and their families have already made significant financial contributions to CF research. The Oxford group, made up mainly of parents and grandparents of people with CF, has raised more than £174,000 for research just since 2003. They are obviously very upset at the current impasse, as they have made that contribution and they now feel that they have to do it again through buyers’ groups. Does the hon. Gentleman agree that that is totally unacceptable?

[Paul Scully]

The hon. Lady is right. The fact that people have to resort to such things is ridiculous given that we have a comprehensive health system. It is about time Vertex recognised that there is plenty of time for it to make a reasonable profit on its drugs portfolio. It is not helping the situation. There are a number of people from the Cystic Fibrosis Trust in the Public Gallery, but unfortunately, as the hon. Member for Bury North (James Frith) said, many sufferers cannot be here because of the danger of cross-infection. They are hopefully watching the debate on television or on their computers.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

The hon. Gentleman is being extremely generous in giving way. On the issue of shareholdings and profit, when I was doing research for this debate, I came across something in the Wall Street news that told me that Vertex gives a higher than average return on investment. Most companies that operate in this area give a return on investment to shareholders of 20%; last year, Vertex gave 45%.

[Paul Scully]

I am grateful to the hon. Lady for pointing that out.

[Luke Hall (Thornbury and Yate) (Con)]

rose—

[Paul Scully]

I am just about to conclude. My hon. Friend the Member for Burton (Andrew Griffiths) made an interesting point. In order not to top the record, I will be finishing very soon.

[Luke Hall]

It is absolutely devastating that we are having a debate in Westminster Hall again about an issue that still has not been resolved. I thank my hon. Friend for his commitment to it. He opened the previous debate, when the Chamber was completely full, and he has opened this debate fantastically well. Does he agree that the message that should go out from this debate is that a permanent deal must be agreed with Vertex as soon as possible? We cannot rely on buyers’ clubs or any other mechanism.

[Paul Scully]

My hon. Friend is absolutely right.

[Sir George Howarth (Knowsley) (Lab)]

The hon. Gentleman is making a very powerful case that we all accept. A moment or two ago, he mentioned somebody he met earlier today who suffers not only from diabetes but from cystic fibrosis. Could we imagine a situation in which someone who has type 1 diabetes and needs insulin to survive has it taken away? Although the two conditions are completely different, is there not some equivalence between the two?

[Paul Scully]

The right hon. Gentleman is absolutely right; that is a really good point. Actually, the diabetes came from the cystic fibrosis, but he is right to talk about the medication in that way.

[Alan Mak (Havant) (Con)]

My hon. Friend is making a persuasive speech. This issue is important in my Havant constituency, as it is in the constituency of my right hon. Friend the Member for Tunbridge Wells (Greg Clark), who is sitting next to me. Does my hon. Friend the Member for Sutton and Cheam (Paul Scully) agree that while we praise the work of the Cystic Fibrosis Trust, we should also commend it for the research into the condition that it does itself? I urge hon. Members from across the House to support any bids for funding that it makes to the NHS or other funding bodies so it can continue its important work in this field.

[Paul Scully]

My hon. Friend is absolutely right. I have been to the Cystic Fibrosis Trust twice, and I was absolutely blown away. It is the kind of organisation that I got into politics to help. I met Lynsey Beswick, who works there—she may be in the Public Gallery. She is a CF sufferer, and she has just climbed Snowdon. I would struggle with that, and she has reduced lung capacity. [Applause.] That is the first time I have got a round of applause in Westminster Hall; I am not sure it is to be encouraged. Lynsey, that is for you.

[John Stevenson (Carlisle) (Con)]

My hon. Friend is giving personal experiences of how this illness has affected individuals. I met Ayda’s family last week to discuss how it affected them. I have been thinking about the benefits that the introduction of the drug could bring about. One is a saving to the NHS through not needing to use other drugs. The family would need fewer visits to the hospital, which would have an effect on patient care and would free up time for the hospital to look after other patients. Does he agree that it would also bring about a significant improvement to family life, not just for the individual, but for the extended family too?

--- Later in debate ---

[Paul Scully]

My hon. Friend is absolutely right. The young son of the lady who had her Orkambi withdrawn at the end of the trial asked her, “Mum, what was the worst day of your life?” She said, “It was when that drug was taken from me.” Her son—from memory, I think he was seven—said, “You know what? That was the worst day in my life as well.” This is about the extended family and the people around the patient. A number of hon. Members have talked about the cost per patient, but it is not just about the patient; it is also about their friends, family and loved ones.

[Gillian Keegan (Chichester) (Con)]

I thank my hon. Friend for securing this debate. I met my constituent Jack when I went to visit our local hospital. It is not surprising that I met him, because he spends six months in the hospital every year. He is now running out of treatment; he has tried everything. He is on 30 tablets a day, and he is on nebulisers. He is trying treatment after treatment, and the treatments are running out. Patients like Jack need this drug urgently, because there is almost nothing left.

[Paul Scully]

My hon. Friend is absolutely right. People are desperate; this has been dangled in front of them and it is about time that we acted.

I welcome my hon. Friend the Minister to her place—it is fantastic to see her serve as well as she does. I know that Vertex and NICE will be listening to the debate, and I hope that they act. It is so important that that we get this right and get it done now, for the sake of the thousands of people across the country who look to politicians to do things. I talked about the independence of the system, but we need none the less to do everything we can to bring the parties together to ensure that they deal with the matter. As I keep saying, this is about human beings, their life expectancy and their quality of life. I look forward to the Minister’s response.

[Several hon. Members rose—]

--- Later in debate ---

[Paul Scully]

You have joined us halfway through the debate, Mr Hanson, and it is a pleasure to serve under your chairmanship.

I thank all colleagues across the Chamber for their contributions. I thank the Cystic Fibrosis Trust for pulling together such a fantastic and insightful meeting this morning, and all those who participated, including the Minister’s constituent, Lucy Baxter. Lucy described cystic fibrosis phenomenally well, capturing it in one sentence: it is like breathing through a straw and then going running. It is that tiny lung capacity that really starts to illustrate the issue that these people live through, from day to day.

We have heard a lot about NICE and possible changes for that portfolio drug—system proposals. We have heard a lot about the need for Vertex to yield somewhat in the negotiations; as the Minister said, it is the outlier. I caution colleagues as they look at the alternatives, whether Crown use, compulsory licensing or a buyers’ club. Yes, we need those weapons in our armoury for the negotiations, but there is always the possible unintended consequence of fallout—the risk for future research into rare diseases of all sorts—if we start to undermine a market that clearly, however, needs to be looked at in relation to big pharma and how it can hold the NHS over a barrel. We just have to be careful about unintended consequences.

I also thank Alasdair Mackenzie, the Community and Outreach Engagement manager for Parliament. He joined me this morning at the deliberations with the Cystic Fibrosis Trust because of his personal interest. His partner, Becky, died of cystic fibrosis just a few years ago. His insight, and his sharing of Becky’s experience, were invaluable to me in my contributions this morning.

I wish, again, to put on the record my thanks, and to give all speed to the Minister, NICE and NHS England in our negotiations with Vertex. I hope that we can bring this matter to a resolution and give that life-saving drug—that quality-of-life drug—to all those thousands of people across the country as soon as possible.

Question put and agreed to.

Resolved,

That this House has considered e-petition 231602 relating to access to Orkambi and other drugs for people with cystic fibrosis.

Bereavement Counselling

Paul Scully Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Warman (Boston and Skegness) (Con)]

“You have a lot of misfortune in your family.” Those, Mr Speaker, are the words that a registrar spoke to me when I registered the death of my mother, who died 20 years ago today, aged 53. Kind, compassionate, understated, he said them because just six weeks previously I had registered the death of my father.

I was, Mr Speaker, 27. I was not a child, but I was, I think, too young to know how to bear some of the sadness that I felt in 2009. Some people have, by the age of 27, borne far more emotion: they have married, had families, served and sometimes died for their countries, and in many instances they have also buried both their parents. However, 27 is young to be an orphan in the western world. I struggled to admit it then and I struggle to admit it now, but I found it impossibly hard. I should have looked for help, because grief makes us all angry, irrational, upset and difficult.

Perhaps too many of us in the House think that that strength is incompatible with weakness. Perhaps too many of us are stubborn. It is often said that that which does not kill us makes us stronger; perhaps that which kills those closest to us can make us stronger still, but few can do it on their own. In this Adjournment debate, I want simply to say to those who struggle with the loss of loved ones—and even the loss of close family members who are not so obviously loved—that there is already help out there, and to say, “You are strongest when you take it up, and go to the doctor or just talk to friends.” However, it is also true that more can be done by the Government and by others.

This week, we celebrate Mother’s Day. Mothers up and down the country will be appreciated through cards, breakfast in bed, and often questionable artwork from their children. For some, though—myself included—that day is a reminder of what we have lost. To use the modern jargon, it is a trigger. I thank you, Mr Speaker, for letting my personal circumstances have some influence on the parliamentary calendar. Changing it seems to be all the rage at the moment, but you know that MPs are surely at their best when we draw on our personal experiences.

The coming of Mother’s Day gives this debate a broader relevance, because I also want to raise the question of what more we can do in government to support those who have been bereaved, and how we can encourage wider society to make small, seemingly insignificant changes that can prevent immense upset for so many people. The bereavement charity Cruse currently claims on its home page that it can “help this Mother’s Day”, and that is hugely welcome, but such is the volume that the charity has suspended its email help service, and its phone lines are not open 24/7. It takes more than charity to tackle bereavement; it takes society, in all its little family platoons.

The Government have done great work in introducing bereavement counselling for parents who lose children, thanks in part to my hon. Friends the Members for Colchester (Will Quince) and for Eddisbury (Antoinette Sandbach), as well as other Members on both sides of the House. I am not calling for a similar kind of bereavement leave for everyone, because businesses, in truth, are largely respectful, and they are also hugely varied. However, I know from personal experience that many people do not feel the true impact of their loss for weeks, months, or even, in some instances, years after the person whom they have loved has passed away. Often they are in shock or trying to be strong for others, and that is on top of all the mundane considerations that have to be dealt with in such circumstances.

[Paul Scully (Sutton and Cheam) (Con)]

My hon. Friend is making an incredibly powerful speech, and I know how proud his parents would have been to witness him doing so. I know about the delay that he has mentioned. My father died 30 years ago this year, of mesothelioma, and I remember reading my mother’s diary, in which she was crying out for help nine months later. It is incumbent on us to recognise that delay, and I appreciate everything that my hon. Friend is saying.

[Matt Warman]

I thank my hon. Friend for that intervention, and that is why in some ways I am calling on the Government to have ongoing support for those who are recently bereaved and an open-ended offer of counselling on the NHS which can be accessed when they are ready, not at the easiest point for the NHS.

St Helier and St George’s Hospitals

Paul Scully Excerpts

Tuesday 19th February 2019 Commons Chamber

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

Let me start by putting on the record my respect and admiration for every single doctor, nurse, clinician and staff member at both St Helier and St George’s hospitals for their outstanding service and dedication to the health and welfare of my constituents. These remarkable individuals go above and beyond, despite facing extraordinarily testing circumstances—nine years of austerity have left our treasured NHS desperately short of staff, services and supplies.

For my constituents, however, the biggest threat to our local hospitals is far closer to home. It is in the wild west of south-west London’s NHS, which is once again pursuing desperate attempts to close all acute services, including the major A&E unit and the consultant-led maternity units at St Helier hospital. The impact that that would have on St George’s hospital, would, I believe, be devastating.

This evening I want to outline the reality behind the latest threat to St Helier, branded “Improving Healthcare Together 2020-2030”. I want to challenge every foundation on which that programme has been built, and I want to appeal to the Minister to step in before we see the decomposition of health services that are vital to my constituents. However, I want to start with some history.

For nearly two decades, the NHS in south-west London has pursued several irresponsible attempts to close the acute health services at St Helier hospital, on the border of my constituency, and move them to leafy, wealthy Belmont in Sutton. Under different titles and brands, and in the guise of countless NHS-funded marketing consultants, the proposal is on repeat, and an estimated £50 million has been wasted on almost identical consultations and programmes. Each one starts afresh, portraying to the public a neutral outlook when it is being decided where acute health services should be placed in south-west London.

The Minister may remember that, back in 2015, secret proposals to close St Helier and build a new super-hospital in Sutton were overheard by a BBC reporter on a train, which brought those plans to an embarrassing end. Fast-forward to 2017 and the programme was repeated, this time entitled “Epsom and St Helier 2020-2030”, and once again professing to assess the pros and cons of where to base acute health services. The public support expressed by chief executive Daniel Elkeles, the man running the programme, for moving the services to Sutton somewhat clouded the neutrality of the process.

[Paul Scully (Sutton and Cheam) (Con)]

Does the hon. Lady not agree that the proposal that immediately preceded this was to close facilities at St Helier and move them to St George’s in Tooting, which was universally unpopular? The proposal that is now on the table, on which I certainly hope there will be a public consultation, refers to one of three sites, and includes a reference to locating a new facility at St Helier hospital.

[Siobhain McDonagh]

My recollection of that particular consultation was that that was really the scorched earth strategy of deciding that St Helier and Epsom were going to close and St George’s would take the strain. I thank God that that never happened, because we could be in an extraordinarily difficult position had it ever happened.

I might sound cynical when I talk about the NHS and its bias against my constituency and against services being at St Helier Hospital, but I have been here several times before. A freedom of information request revealed that those running the programme only distributed consultation documents to targeted areas around their preferred site and to just a handful of roads in my constituency. But my constituents care passionately about their local health services and will not be ignored, and 6,000 local residents responded to the programme by calling for St Helier to retain all its services on its current site.

[Siobhain McDonagh]

I agree with the hon. Gentleman, but it is about not just distance travelled but who is travelling that distance: do they have access to a car, or do they have public transport? The NHS constitution requires that equalities legislation is taken into account, particularly looking at disadvantaged people who are in poor health and how they access services, because they access services differently.

As I said, my constituents care passionately about local health services, and when they responded to the consultation 6,000 of them sent in cards explaining how they felt and saying that they wanted St Helier to retain all its services on its current site. Can you imagine the anger when I found out that their responses had been discounted by the programme? Why? Because they were not on the official documentation—the same documentation that had been disseminated in those targeted letterboxes far away from my constituency.

To the public, the trust portrayed a neutral stance whereby a suitable site across south-west London would be selected for their acute services. To the stakeholders in Belmont, it confessed its desire to move the services to their wealthy area, and to mine, it pretended that the consultation would genuinely seek the views of the public. But as my mum always says, much gets more. I would like to put on record that while I fundamentally disagree with the desire to take services away from my constituents, I do recognise Mr Elkeles’ hard work and dedication in leading St Helier Hospital.

We now fast-forward to the present day and the latest brand, “Improving Healthcare Together 2020-2030”, a programme built upon the unstable and unscrupulous foundation of its predecessors and that once again considers the pros and cons of moving St Helier Hospital’s acute services 7 miles west to Epsom or south to leafy Belmont in Sutton. The programme was launched last summer—they always choose the summer—undertaking an initial public engagement that is expected to transition to a public consultation this coming summer. But just 837 people responded to the public engagement, and that is including hundreds of NHS staff and 169 comments on Twitter or Facebook. That is an utterly abysmal response considering the £2.2 million of taxpayers’ money squandered on the programme already. Does the Minister agree that this is a complete misuse of taxpayer funds at a time when our NHS is under such overwhelming pressure?

This is about more than just the future of St Helier Hospital. My constituents tell me that if St Helier Hospital were to lose its acute services, they would turn not to Epsom or Sutton but east to Croydon University Hospital or north to St George’s. That is a completely terrifying prospect. Before Christmas, my constituent, Marian, was left queueing outside St George’s Hospital with her left leg badly infected, because the A&E was full. And that was the calm before the storm, with St George’s A&E facing its busiest ever week just a fortnight ago. We all remember the winter crisis last year, but the first full week of February this year was 16% higher than last year’s equivalent, with a simply staggering 600-plus visits every single day. This is a hospital that already relies on St Helier as its safety valve. The maternity unit at St George’s had to close temporarily in 2014 and 2015, directing women who were already in labour to St Helier Hospital.

That is why a letter sent in November from the chair of the St George’s trust to those running the programme is completely astonishing. In the letter, the chair expresses her concern that

“there is no formal requirement to take account of the impact on other providers”

when deciding where to relocate acute health services across south-west London. It is hard to put into words just how dangerous that disregard is. I should like to pause briefly to thank the chief executive of St George’s Hospital, Jacqueline Totterdell, for her hard work and tenacity in steering one of London’s largest hospitals at a time of such difficulty.

St George’s is a hospital already under immense pressure. The plumbing, ventilation and drainage facilities are at breaking point, leading to a bid for £34 million of emergency capital from the Treasury. Does the Minister agree that a recent outflow of sewage in the hospital A&E is a clear sign that such emergency funding is justified and, more importantly, urgent? How busy does she think the same A&E would be if the local NHS were to get its way and move St Helier’s major A&E to wealthy, leafy Belmont? Will she step in today and require any proposal to reconfigure health services to wholeheartedly take into account the impact that such a decision would have on all other nearby health providers?

Merton Council recognises the devastating impact that these proposals could have, and I would like to put on record my thanks to leader of Merton Council, Stephen Alambritis, the cabinet member for social care, Councillor Tobin Byers, and the director of community and housing, Ms Hannah Doody, for their unflinching support. It is so disappointing that those at Sutton Council can stand so idly by.

By law, when deciding where acute services should be based across a catchment area of this size, it is fundamental that the level of deprivation and local health needs are accurately understood and thoroughly assessed. So I read from cover to cover the deprivation and equality analysis produced by a range of external consultancy services as part of their £1.5 million programme fee. At a time when the NHS is so strapped for cash, it is extraordinary that my local NHS seems to have carte blanche to employ so many consultants on such extraordinary rates. But even I was absolutely astounded by the monumental gaps in the analysis that these consultants have delivered.

In the pieces of analysis on deprivation and equality, areas that rely on St Helier Hospital are either absent from the documents or actively described as falling outside the catchment area. Take Pollards Hill in my constituency, an area that would be considered deprived in comparison with much of Sutton or Epsom. Wide Way Medical Centre is the largest GP surgery there, and it directs 34% of its patients to St Helier Hospital, but Pollards Hill is deemed to be outside St Helier’s catchment area. Why does this matter? Because if areas that rely on St Helier Hospital are not even considered in the analysis, how can the potential impact of moving acute services from the hospital be adequately assessed? Pollard’s Hill is not alone. The report does not mention Lavender Fields despite almost a fifth of Colliers Wood surgery patients and Mitcham family practice patients being directed or referred to St Helier from the ward.

I urgently brought the gaps in the analysis to the attention of those operating the programme and Jane Cummings, the NHS’s chief nursing officer. I was pleased that everyone agreed that such significant analysis shortfalls would be addressed and rectified.

[Paul Scully]

The hon. Lady is being generous in giving way. Does she agree that Colliers Wood is pretty much smack-bang next to St George’s and that the proposal on which last year’s public engagement was based was that 85% of current patients would still be treated in their current hospital, whether St Helier, the proposed Sutton site or Epsom?

[Siobhain McDonagh]

There is no reason why the hon. Gentleman should know this, so I am not trying to be tricky, but Colliers Wood surgery is the title of a split-site GP surgery. One site is on Lavender Avenue off Western Road—the hon. Gentleman probably knows Western Road from driving up and down it a lot—in the heart of one of the most deprived areas in my constituency, and many people there go to St Helier hospital. The idea that we could remove an A&E and a maternity unit and keep what is left is complete nonsense, because all the blood and testing facilities and all the talented doctors and nurses simply would not stay there. Chase Farm Hospital, which is in the constituency of my right hon. Friend the Member for Enfield North (Joan Ryan), is a wonderful example of such a situation, and Members may want to have a look at it.

I pointed out that areas in my constituency and large surgeries had not been included in the analysis, and I was promised that they would be. However, months have passed, and the process has proceeded unscathed, with no indication of when such significant gaps will be remedied.

The icing on the cake came in December when three behind-closed-doors workshops based on the deficient evidence were run by the programme. They were designed

“to inform the Governing Bodies decision making process about how the community and professionals ranked each of the three potential sites for acute hospital services”.

Let me be clear: hand-picked professionals and members of the public used incomplete evidence to rank Sutton as the preferred site for acute services. The Minister will not be surprised to hear that more participants in the workshops were from Sutton than from Merton or Epsom. How can a fair, balanced and rounded opinion be accrued from workshops based on flawed evidence and disputable criteria and with an unrepresentative group of people? For the findings to be used in any capacity in the decision-making process would be completely unacceptable.

Of course, I understand that figures and analysis can always be skewed in one direction or another. Someone wanting to disguise the 76.5-year life expectancy of men in Mitcham West in my constituency could include the 84.4-year average in Wimbledon Park and classify the figures by the borough of Merton as a whole. They could count cancer rates, stroke rates, mortality rates by borough rather than by ward or lower super output area. They could ignore deprived parts of the catchment area and proceed full steam ahead with the programme.

When will the gaps in the analysis be completed? When will taxpayers’ money stop being splurged on flawed and biased consultations? When will the madness end? Here is the reality: there are over twice as many people with bad or very bad health within a mile of St Helier than there are living within a mile of the Sutton site, and almost four times the number within a mile of Epsom. Around St Helier, the local population is significantly larger, with considerably more dependent children and more elderly people. Furthermore, the population local to St Helier is far more reliant on public transport, with residents statistically less likely to have access to a car.

Despite all that, when I secured—I can hardly believe it myself—£267 million from the Department of Health and the Treasury under both the Labour Government and the coalition Government to rebuild St Helier Hospital, guess what happened? The local NHS sent the money back. Can the Minister confirm whether the hospital will again receive its funding this time round?

It is time for some accountability and for the Government to step in before even more money is wasted and the future of both St Helier and St George’s is thrown into jeopardy. Leave these vital services where they are most needed: at St Helier Hospital, on its current site.

[The Minister for Care (Caroline Dinenage)]

I congratulate the hon. Member for Mitcham and Morden (Siobhain McDonagh) on securing this incredibly important debate on the future of St Helier and St George’s hospitals. I thank her for her continuing interest in healthcare services in south-west London over many years. She has been a passionate, highly motivated and extremely effective advocate for the interests of her constituents, and I am sure many of the points she has raised today will be heard beyond these four walls.

The hon. Lady is rightly concerned about the future of services at St Helier Hospital, which is run by Epsom and St Helier University Hospitals NHS Trust, and particularly about the future of its A&E service. She is right that the organisation of acute services in south-west London appears to have been discussed for a number of years. In the interest of time, I will not set out the timescales and all the things that have occurred over that period, as she has already articulated it well.

In June 2018 the clinical commissioning groups published an issues paper, which outlined the challenges faced by the local healthcare system and the four key local aims: improving the health of the population; delivering care as close to patients’ homes as possible; ensuring high standards of healthcare across all providers; and maintaining the provision of major acute services within their combined geographies. The issues paper set out a provisional shortlist, with three potential options for acute care: locating major acute services at Epsom Hospital and continuing to provide all district services at both Epsom and St Helier hospitals; locating major acute services at St Helier Hospital and continuing to provide all district hospital services at both Epsom and St Helier hospitals; or locating major acute services at Sutton Hospital and continuing to provide all district services at both Epsom and St Helier hospitals.

The CCGs invited comments and suggestions from local stakeholders over a period of three months. The CCGs stressed that the proposals do not involve closing any hospital. At this stage, they say, they do not have a preferred local proposal. I understand they are continuing to work with local partners to further develop the proposals, which will include a full options appraisal, an impact assessment and the development of a pre-consultation business case that will, of course, have to undergo NHS England assurance. I am sure the hon. Lady will make her thoughts known to NHS England.

[Paul Scully]

Does my hon. Friend agree that one thing many people in Sutton and Merton do not have, because St Helier is such an old hospital, is a possible £400 million brand-new facility, which would bring benefits no matter where it is located?

[Caroline Dinenage]

My hon. Friend makes an excellent point, and that is why it is important that no significant changes are made without consultation so that local people’s views can be taken into consideration. The CCGs will need to consult the public fully before making any decisions about a new hospital or changes to the configuration of acute services, but clearly any form of investment is welcome.

[Caroline Dinenage]

The hon. Lady asks an excellent question. The CCGs are working closely with NHS England and NHS Improvement to develop the programme’s capital scheme prior to the next spending review, with a view to NHS England and NHS Improvement presenting the scheme for funding. They expect the public consultation on their proposals not to take place until after the next round of capital bids is concluded, which is likely to be after the autumn. There is a duty to carry out a travel times analysis when developing proposals, and this will be included in the consultation. CCGs also have duties to reduce inequalities. She spoke a lot about the inequalities in her area, and an impact analysis of that has to be done.

I understand that the hon. Lady is also concerned that any potential changes could increase pressure on St George’s hospital, and she is absolutely right to raise that important point. The Department is clear that NHS England and local NHS organisations must think about potential impacts on other services, which is why we are developing a more strongly regional approach in designing NHS services. CCGs must consider the impact on neighbouring hospitals close to the CCG boundary, such as St George’s. Changes to A&E services at any one hospital potentially have an impact on a number of surrounding hospitals, so the three CCGs have to engage with their neighbours throughout this process. In addition, the neighbouring CCG can respond to any public consultation and its response must be taken into account.

On the next steps, the hon. Lady will be aware that the reconfiguration of services is a matter for NHS England and local NHS bodies. Such matters have to be addressed at local level rather than in Whitehall because local organisations understand the needs of their community. No changes to the services people receive can be made without formal public consultation. They must have support from GP commissioners, demonstrate strengthened public and patient engagement, and have a clear clinical evidence base. They must also be consistent with the principle of patient choice. The NHS England test on the future of use of beds requires assurance that the proposed reduction is sustainable in the longer term. The Department is very clear that throughout the service change process local NHS organisations have to engage with the wider public and with the local MP on these issues, so I am sure that she and her constituents will take part in any local engagement as plans move forward.

The challenges facing the health economy in south-west London have been widely understood for a number of years. I recognise and appreciate that potential changes to local health services are often a cause of great worry and that they inspire impassioned debate among those involved. It is time for local partners to work together to find a solution which, as the hon. Lady said, has to be right for the people of south-west London and will secure a sustainable configuration of health services in the future. I thank her again for her continued dedication to these health matters.

[Paul Scully]

The Minister mentioned the fact that the consultation might be done after the spending review. I have written to the Secretary of State asking whether he would consider looking at that again, because the mayoral election is coming up next year and the purdah period will mean that this will, in effect, be delayed for a whole year. Anything more that can be done to bring it forward would be very helpful.

[Caroline Dinenage]

In the nick of time, my hon. Friend makes that point well, and I will definitely make sure that it is passed on.

NHS 10-Year Plan

Paul Scully Excerpts

Tuesday 19th February 2019 Commons Chamber

[Jonathan Ashworth]

It has been delayed. There are no details about training budgets, because the Department has to wait for the spending review. We have 100,000 vacancies across the national health service, with think-tanks warning that we will have 250,000 vacancies unless we do something. We cannot wait for this workforce plan; we need action now.

Also missing from the long-term plan is any serious investment in public health services—this is picking up on another point that the hon. Member for Central Suffolk and North Ipswich made. Public health services are being cut again this financial year under this Government. When we take into account the cuts to public health services, the cuts to infrastructure, and the cuts to training, there is actually a £1 billion cut to health spending this year. The cuts to public health are equivalent to 1,600 fewer health visitors, 1,700 fewer school nurses, and 3,000 fewer drug workers. They mean that our constituents become sicker and demands on the wider NHS become greater. Drug and alcohol services will be cut by £34 million this year, even though the unmet need for treatment for alcohol problems has risen to 600,000 and admissions to hospital where alcohol is a primary factor have increased by 30%.

Also cut are smoking cessation services and obesity services. Cuts to health visitors and early years initiatives correlate with a fall in vaccination rates. Admissions to hospital for whooping cough are up by 59%. There have been deep cuts to sexual health services at a time when infections such as syphilis and gonorrhoea are increasing. These cuts to sexual health services are having an impact on women’s reproductive health, with experts expressing concerns that the use of long-acting reversible contraception is decreasing. Abortion rates among the over-30s are increasing and 8 million women live in areas where funding for contraception has decreased.

Let me read the House a quick extract from the Health Committee involving my friend—I will still call her my friend—the hon. Member for Liverpool, Wavertree (Luciana Berger). I am desperately sad that she felt that she had to leave the Labour party. I hope that the Labour party will get on top of this antisemitism issue. At the Health Committee, she asked about the health consequences of delays in accessing sexual health services. In responding, Dr Olwen Williams from the British Association for Sexual Health and HIV said:

“We are seeing neonatal syphilis for the first time in decades and neonatal deaths due to syphilis in the UK…We are seeing an increase in women presenting with infectious syphilis in pregnancy, and that has dire outcomes.”

These public health cuts were endorsed, not reversed, in the long-term plan.

[Paul Scully (Sutton and Cheam) (Con)]

rose—

[Jonathan Ashworth]

I will give way for the final time.

[Paul Scully]

I am grateful to the hon. Gentleman for giving way. He talked about a few different topics, but I think that I heard him say that there was an overall cut in the health service—I think he did so when he was welcoming some of the Government’s measures. In the 2017 manifesto, Labour committed to a 2.2% increase, whereas this Government committed to a 3.4% increase, so I hope that he welcomes that increase as well.

 Orkambi and Cystic Fibrosis

Paul Scully Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully (Sutton and Cheam) (Con)]

I beg to move,

That this House has considered e-petition 209455 relating to access to the drug Orkambi for people with Cystic Fibrosis.

I will first read the petition into the record, if I may. It is entitled “Make Orkambi available on the NHS for people with Cystic Fibrosis”, and states:

“Conventional CF treatments target the symptoms of CF, precision medicines like Orkambi tackle the cause of the condition. Though Orkambi is not a cure, it has been found to slow decline in lung function, the most common cause of death for people with CF, by 42%.

In July 2016, the National Institute of Clinical Excellence (NICE) recognised Orkambi as an ‘important treatment.’ They were, however, unable to recommend the drug for use within the NHS on grounds of cost effectiveness and a lack of long-term data.

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

To date, there are 115,419 signatories to the petition.

It is a pleasure to serve under your chairmanship, Mr Evans. This is my first debate here—hon. Members have not come to see me, but to support this important cause. It is incredible to see so many people, and to see these Benches and the Public Gallery full. I thank my hon. Friends and colleagues for supporting this noble cause.

[Ian Paisley (North Antrim) (DUP)]

Does the hon. Gentleman agree that the reason why there is such public and political interest in this matter is that the Government have acted in a prehistoric way when it comes to treating patients? This drug should be purchased and made available as widely as possible and as soon as possible, so that patients who suffer from this disease can have a better quality of life.

[Paul Scully]

I understand the hon. Gentleman’s position and concern, especially so when many people in Ireland in particular are cystic fibrosis sufferers, but I remind him that NHS England is the procurer, not the Government—it is done through that independent process.

[Mr Charles Walker (Broxbourne) (Con)]

I discussed this with my hon. Friend the Member for Meon Valley (George Hollingbery), who is in the Chamber. We decided that it is essential for Vertex and NHS England to be reasonable. There is common ground and a deal to be done. Both sides need to work towards that with the encouragement of the Minister and the Department of Health and Social Care.

--- Later in debate ---

[Paul Scully]

I totally agree. When I say that the Government are not the purchaser of the drug, it does not mean that they are without responsibility. The Government have a position, which I will flesh out in a short time, but it is important that they play the role of middleman to encourage negotiations between Vertex and NHS England to ensure that sufferers can get the cutting-edge treatment they deserve.

[Mr Jim Cunningham (Coventry South) (Lab)]

We are told the drug is not economical, but has anybody done the figures on that, given the seriousness of the disability? I wonder whether the hon. Gentleman or more probably the Minister have any figures. People cannot take things out of thin air and say, “It is not economical,” without letting us know the figures.

[Paul Scully]

I clearly do not have the figures that may have been done on the economics, but I know there is a test, which I will talk about later, in which the treatment falls between two stools. In effect, the system does not suit this kind of condition. It suits acute conditions far better—I will come to that shortly.

[Alex Burghart (Brentwood and Ongar) (Con)]

My hon. Friend is being extremely generous with his time. Is it the case that this treatment might prevent certain conditions from escalating, and so prevent people from having to move on subsequently to more expensive treatments?

[Paul Scully]

It is exactly the case—there is no doubt about that. There are many people in the Public Gallery whose children are sufferers from cystic fibrosis. When I was at the Cystic Fibrosis Trust last week, I could not meet many sufferers, because they cannot be in the same room due to the risk of infection. As my hon. Friend says, cystic fibrosis can escalate quickly, and the more we can treat the underlying causes, which Orkambi and subsequent drugs will allow us to do, the better.

[John Spellar (Warley) (Lab)]

Can we not see, during the week in which Stephen Hawking died in his 70s from a condition that was anticipated to kill him in his 20s or early 30s, that in fact conditions can allow for a much longer life? Is it not therefore incumbent on the Government to put pressure on both NHS England and the manufacturer to get an acceptable solution that will enable younger patients in particular to have the same opportunity that Stephen Hawking had?

[Paul Scully]

That is very much the point. Half the people who die of cystic fibrosis are under the age of 31. The average life expectancy for someone born now with cystic fibrosis is 47, so we see how it is starting to extend. When I was at the Cystic Fibrosis Trust just last week, I thought that the two people I was able to meet were just staff of the trust and did not realise they were sufferers. Why was I able to meet them, and why did I not notice? Because they had had lung transplants. In effect, they had pressed the reset button on their suffering. They had fresh pairs of lungs and Orkambi would not necessarily be right or necessary for them. The right hon. Gentleman is absolutely right in identifying that it is for the next generation coming through.

[Sir Greg Knight (East Yorkshire) (Con)]

In view of the national importance of this matter, would one way forward be for Vertex, the drug manufacturer, to be willing to be more flexible on costings and price?

--- Later in debate ---

[Paul Scully]

We are effectively in a position of negotiation with Vertex. When the petition was originally started, the issue was, “Here is Orkambi; let’s set a price and buy it.” It was a very high price, which is why the National Institute for Health and Care Excellence made its decision. We have now moved on to a portfolio system that Vertex is proposing. Vertex has a drug that has been available here for a little while, Kalydeco. Orkambi is available in Ireland, the Netherlands and other countries, but not here—and even then, it would not be right for every mutation of cystic fibrosis. Symdeko is coming out in the future, and there is a pathway of drugs that will have ever-increasing effectiveness on a wider group of people.

Vertex has proposed a system, which has been knocked back by NHS England, but I hope both sides can come to a reasonable conclusion as a result of this debate and as a result of pressure. The important thing is to get access for those people who are suffering and whose lung capacity can reduce so quickly at any moment.

[Sir Edward Davey (Kingston and Surbiton) (LD)]

The hon. Gentleman is making a powerful case. Is the problem that the current system of NICE analysis, using its quality-adjusted life year—QALY—measures, is unable to take account of negotiated discounts through pipeline agreements such as the one he has outlined? Is it time that this House and the Government made it clear that that needs to be taken account of, and that NHS England and Vertex need to get together and show that the cost is good value for money when we take account of pipeline deals and negotiated discounts?

[Paul Scully]

The right hon. Gentleman’s contribution comes to the nub of the issue. I will scrap most of my speech, which I had not written anyway, and dash around. There are two issues. We can talk about the Government getting involved in pushing NHS England and Vertex together to make a sensible deal in this case, but I come back to the point that this is an analogue system in a digital age. I will try to do it justice, but it is a case of inequality. About 400 patients have access to Kalydeco, which I mentioned earlier. They have a particular mutation to which Kalydeco responds. Around 3,000 patients would be eligible to access Orkambi. However, the point about cystic fibrosis is that, because it is a genetic disease, it cannot be caught, so we know pretty well the number of people we will need to treat over the next few years. There are around 10,400 sufferers in this country, which is extraordinary, because there are only 70,000 sufferers around the world.

Cystic fibrosis is a pernicious disease, and I have not even started talking about its effect on the children of the people I have met. However, it is not big enough to require an international epidemic-style solution, and it is not small enough to be a rare disease. It fits somewhere in the middle.

[Bob Stewart (Beckenham) (Con)]

Nobody can catch cystic fibrosis, but as my hon. Friend mentioned, two sufferers in the same room together can really affect one another. The bugs from their lungs can transfer, presumably through the air.

[Paul Scully]

Absolutely. A lot of the people I have met have aspergillus, which is a mould-based infection. It is around in the air in many homes, which for us does not matter, but for sufferers can cause a severe reaction and a severe loss of lung capacity.

[Alan Mak (Havant) (Con)]

My constituency, and that of my right hon. Friend the Member for Portsmouth North (Penny Mordaunt), were among the top three constituencies for people signing the petition. Will my hon. Friend join me in calling on the Minister to get Vertex, the NHS and NICE to continue their negotiations, because time is of the essence?

[Paul Scully]

My hon. Friend is absolutely right. It is important, because every day counts for people who have the condition. I said that cystic fibrosis cannot be caught, but neither can it be cured. The people who have cystic fibrosis now will be the same people who have it for the rest of their lives, which basically means that the supply of Orkambi would have a fixed price. We know pretty well, within a margin, how much we would spend on this lifelong treatment.

The current evaluation process turns on an incremental cost-efficiency ratio, which is the total additional lifetime cost of a treatment divided by the additional quality-adjusted life years resulting from that treatment. For acute conditions, the additional quality-adjusted life years resulting from the shorter-term treatments moderate the efficiency ratio, even if the drug is expensive. However, because drugs for chronic and lifelong conditions have to be taken every day for life, the cost of the treatment prevents that downward moderation. Basically, it is easier, under the NICE appraisal system, for medicines for acute conditions to attain a more favourable cost-effectiveness outcome than for innovative medications for chronic conditions, like Orkambi. It is basically a one-size system.

We then have to take into account section 13G of the National Health Service Act 2006, as amended by the Health and Social Care Act 2012, which requires NHS England to have regard to the need to reduce inequalities in health outcomes. Those two imbalances in the system need to be looked at if we are to have a system that is far fairer for people with illnesses such as cystic fibrosis.

[Douglas Ross (Moray) (Con)]

My hon. Friend’s excellent speech rightly focuses on NHS England, but does he agree that there has been a great campaign to get Members from across the country to come to the debate? Some 74 of my constituents signed the petition, because cystic fibrosis sufferers across the UK want action.

[Paul Scully]

I agree. It was a fantastic effort from—it was a remarkable achievement—the petitioners to get 114,000 signatures within 10 days. I have been on the Petitions Committee since its start and, short of having a go at Donald Trump and a few of the Brexit debates, this is one of the most potent petitions, and one of the more productive.

[Alex Chalk (Cheltenham) (Con)]

Does my hon. Friend agree that drugs companies need to behave ethically in pricing their vital medicines? While profit itself is not a dirty word, when it comes to cystic fibrosis treatment, profiteering is.

[Paul Scully]

One thing I will say in favour of Vertex in this case is that, although the amount of people who suffer from this condition is fortunately restricted, the research and development still has to go in. It is not like developing the next ibuprofen or cancer drug, which will go out to millions of people; this would go out to 70,000 people in the world. In order to build that research and development budget in, Vertex needs to charge reasonable costs for the drug. None the less, those costs do need to be reasonable. That is why the negotiation needs to be absolutely above board, transparent and sensible for the sake of the sufferers, who, frankly, do not have time to wait for a prolonged negotiation.

[Paul Girvan (South Antrim) (DUP)]

So much emphasis is put on the cost of treatment, yet if we add together the costs of the cocktail of drugs that many sufferers are currently on, there probably would not be a big difference from the cost of the new drug.

[Paul Scully]

I will come back to that important point in just one second. We were talking about the campaign being brought together, and I want to pay tribute to the hon. Member for Dudley North (Ian Austin), who has done a fantastic job in raising the profile of cystic fibrosis. I am sorry that I was not able to be at the roundtable that he hosted—I was out of the country—but 41 Members were there who were keen to learn more about this. That is because of his efforts and the efforts of the petitioners, and that is absolutely to be welcomed.

[Ian Austin (Dudley North) (Lab)]

That is very generous of the hon. Gentleman, and I am grateful, but the credit is due not to me but to the fantastic campaigning of the Cystic Fibrosis Trust, the army of people around the country who have this condition and their families. Let us be honest: that is why there are so many Members in the Chamber today, just as there were at the roundtable. However, I am grateful for what he says.

[Paul Scully]

Take it while you can—I am joking, of course.

We have talked a little about cystic fibrosis, and we are all here because we know what it is, so I will not talk about that. I know that lots of Members want to speak, so I will finish with the little hint that I have seen of what it must be like to live with cystic fibrosis. It goes to the point about medicines from the hon. Member for South Antrim (Paul Girvan). I saw a fantastic video—it is private at the moment but I hope the Millers will make it public—of Grace Miller, who is 15 and likes to run. What many people do not understand about cystic fibrosis is that many people have to do physio. They actually do more training than a lot of professional athletes. These kids, who may be aged three or four, have to get up and use a nebuliser for an hour or so. I met a mother who talked about her three-year-old daughter who would use a nebuliser with salty water. It would make her cough and make her sick, and she would then have to do her physio. She would have to run on the spot and run around the house for a while, and then she would have to go and eat.

However, cystic fibrosis also suppresses nutrient intake, so sufferers have to eat far more than normal people—50% more in many cases—with some people taking up 3,000 calories or maybe more each day. It is therefore no surprise that sufferers often have a really unhealthy relationship with food. They just do not want to eat. We talked about one girl who filled her pockets with coins because she did not want to go to school and be underweight. That relationship with food is relatively minor in some ways, compared with the shortage of breath and the actual illness. We have not even started to talk about the underlying illness that cystic fibrosis causes.

[Liz Kendall (Leicester West) (Lab)]

The hon. Gentleman is being very generous with his time. One hundred and eighteen of my constituents signed the petition, so I am very grateful for the debate. He speaks with great passion about the huge challenges facing people living with cystic fibrosis. I agree that NHS England and the drug company need to get together to resolve this issue as quickly as possible. However, does he agree that the bigger issue is about ensuring that NICE has the proper processes in place to make sure that new drugs are agreed as quickly as possible? Does he also agree that the Government should review that, to make sure, not only with this issue but with others, that people have confidence in the process and that that follows the right principles and guidelines?

[Paul Scully]

I thank the hon. Lady for that intervention, and I totally agree with her.

I will finish on the issue of living with cystic fibrosis by saying that in addition to having physio and nebulisers, sufferers often have to take a huge cocktail of drugs, as the hon. Member for South Antrim said. The cupboard that I saw for Grace was bigger than one of my kitchen cupboards and it was just full of medicines. There have to be savings in that respect. To return to the hon. Lady’s point, it is really important that we have a system that is fit for purpose. We can sit there and put sticking plasters, as it were, on all these things, but that is what we need. When we are talking about the health service as a whole, it is not always about the big headlines that we argue about across the Chamber. It is about efficiency and ensuring that things work in the modern age. For modern diseases, there need to be modern treatments and so on.

[Hugh Gaffney (Coatbridge, Chryston and Bellshill) (Lab)]

The hon. Gentleman is making a great speech. Before he finishes, I would like to say that I have had more than 250 emails on this issue alone from my small constituency. The point I want to make to the Minister is that we have a full house in this Chamber and a full Public Gallery. I want this noted. The Government have to act on this issue—not just talk about it, but act on it. Let us take some action.

[Paul Scully]

I thank the hon. Gentleman for that intervention. I will give way one more time and then conclude.

[Matt Western (Warwick and Leamington) (Lab)]

The hon. Gentleman has been very generous with his time. What struck me most—I am sure that this was the case for many people in the Chamber—was just how many countries, particularly in Europe, have agreed and licensed this product. Therefore the cost-benefit analysis has been done, and therefore it is now incumbent on the Government—the Secretary of State—and the NHS to sit around the table with Vertex and discuss how we can deliver it as soon as possible.

[Paul Scully]

I thank the hon. Gentleman for that intervention. Let me be the first to mention Brexit. This is not quite as random as it might seem, because I met someone last week who lives close to the Irish border. Of course, that means that his daughter cannot access Orkambi, but if they were only a few miles across the border, in the Republic of Ireland, she would have access to it. We have to address that inequality, and that will be done, as I keep repeating, by two things. If we can ensure that we use any of our good offices to get NHS England and Vertex to come to a sensible agreement quickly, we can get the portfolio process started now. But I also ask the Minister to see what more he can do to adapt the system long term, so that it is fit for purpose for those modern-style, portfolio-type deals that are done elsewhere.

I keep talking about the urgency of this issue. We were taken to the Cystic Fibrosis Trust by someone who works here, one of the parliamentary outreach team. Alasdair lost his partner. Her lung capacity had dropped to 20% before she died. Some of the people we met had seen their lung capacity drop from 90% to 15% within two or three months. That is why things such as infections are so dangerous. It does not take a lot. Something that we would just shake off can be, for these people, literally a matter of life or death, or it can be a matter of being able to get a lung transplant somewhere down the line or not. That is why there is this sense of urgency. They have been described as a limited number of people, but none the less they are crucial, important people who, if we give them the treatment that they deserve, can go beyond the 31 or 47 years and live a full life, as we would expect to do. With that, I will conclude and let others speak.

[Several hon. Members rose—]

--- Later in debate ---

[Luke Hall (Thornbury and Yate) (Con)]

I am delighted to have a chance to speak in this debate, Sir Roger. I thank my hon. Friend the Member for Sutton and Cheam (Paul Scully) for securing it. When it was initially scheduled by the Petitions Committee, they probably had no idea about how timely it would be three days after the announcement that a deal has not been reached. I thank my hon. Friend for his work. I know he has worked with the CF Trust to learn more about cystic fibrosis. I also thank the CF Trust for all the work it has done not only in setting up the roundtable and for spending time with me speaking about CF, but for what it has done to educate all Members.

[Paul Scully]

Because of the nature of the disease and the fact that there are only 70,000 sufferers around the world, the CF Trust has 99% of the entire clinical diagnostic information of sufferers around the world, which is a good resource to be able to feed back into future treatments. Will my hon. Friend pay tribute to that?

[Luke Hall]

Absolutely—that example highlights the positive work that the Cystic Fibrosis Trust is doing. I want to put on record my thanks and appreciation to all the parents and campaigners, whom I find completely inspirational. Not only are they parents, which is challenging enough in itself sometimes, but they are parents of children with CF, and on top of that they manage to find time to lobby their MPs, to get groups of people together, and to get support for petitions and debates such as today’s.

--- Later in debate ---

[Paul Scully]

I thank the Minister for listening to us today. I congratulate not only all hon. Members who have spoken today, but Gemma and Michelle, who started this petition, and the people I met at the Cystic Fibrosis Trust.

We have talked a lot about suffering over the last three hours, because of the obvious necessity, but there are a lot of young people with cystic fibrosis who are watching this, and I want to end on a positive note. I started by talking about the video I watched. When we talked about running, I remember Grace Miller’s parents looked at a bag of trophies that she had won running. She was sad, because she missed the ability to run because of her lung capacity.

I would say: “Don’t be sad. Don’t look back at what you have done. Look into the future at what you are doing. Enjoy every day, because it is your stories that you are telling us today, and the constituents we have heard from today, that have got us to the point where we can hopefully get the Minister, the Government, NHS England and Vertex around the table and have a bright future for our constituents who are suffering from cystic fibrosis, with that progressive medicine.”

Question put and agreed to.

Resolved,

That this House has considered e-petition 209455 relating to access to the drug Orkambi for people with Cystic Fibrosis.

Oral Answers to Questions

Paul Scully Excerpts

Tuesday 6th February 2018 Commons Chamber

[The Minister of State, Department of Health and Social Care (Stephen Barclay)]

It is interesting, looking at the comparisons, to see that the NHS in Wales appears to have changed a number of them, to make it more difficult to compare performance between England and Wales. The more scrutiny there is of the performance in Wales—where clinicians say that the best performance often equates to the worst performance in England—the more we will see the need for serious changes in the way in which the NHS delivers its services in Wales.

[Paul Scully (Sutton and Cheam) (Con)]

In Sutton, we have hugely exciting plans for a London cancer hub, working with the Royal Marsden Hospital and the Institute of Cancer Research, on a single campus to provide a global centre for cancer innovation that will in turn provide a huge boost for our local economy, including 13,000 new jobs. Will the Minister join me in Sutton to see the opportunity at first hand? Will he also tell us how such a project can help to deliver on our Government’s life sciences strategy?

[Steve Brine]

I am keen to visit my hon. Friend in Sutton, so let us fix a date as soon as we can. Cancer survival rates are at an all-time high, but I like the idea of a one-stop shop, and the hub that he talks about could be very exciting.

Oral Answers to Questions

Paul Scully Excerpts

Tuesday 4th July 2017 Commons Chamber

[Mr Dunne]

As the right hon. Gentleman knows, the south-west London sustainability and transformation plan area is in the process of turning its proposals into plans, with public consultation when appropriate. It has yet to make any recommendations. As he knows, it set up four local transformation boards to consider how best to transform services, including at both Epsom and St Helier hospitals, for the decade beyond 2020. It would therefore be wrong for me to prejudge those conclusions at this stage.

[Paul Scully (Sutton and Cheam) (Con)]

Rather than having empty political campaigns, does my hon. Friend have a sympathetic ear for an alternative, well thought-out plan for healthcare in Sutton which works clinically and financially and listens to all residents in Sutton?

[Mr Dunne]

My hon. Friend is right. We need to look to the proposals coming from the clinicians on the ground who are responsible for running acute services for the whole of south-west London. They have made it clear that they intend to consult the public once they have made their recommendations transparent. They intend to retain all five hospitals but to look at the configuration of services among them, and that needs to be led by clinicians.

Community Pharmacies

Paul Scully Excerpts

Wednesday 2nd November 2016 Commons Chamber

[Paul Scully (Sutton and Cheam) (Con)]

During the past year, I have visited a number of local, independently run community pharmacies across Sutton. They add much to our local healthcare provision, and they have the potential to add so much more, as we have heard. We therefore need to tread carefully when looking at changes to funding and configuration. When I spent time in those pharmacies, I saw a steady stream of customers. The pharmacist knew most of them by name, as well as their background and wider circumstances. Such a special relationship takes time to build, but it can be so valuable in assessing health needs and pre-empting any problems. We need to look at how we can develop community pharmacies further as a neighbourhood health and wellbeing hub, so that they become the go-to destination for support and advice and act as a gateway for other healthcare services.

As a number of hon. Members have done, I have been to A&E and seen people who have not had an accident or do not appear to be an emergency, so it is right to look at how we push people towards GP services. However, there seems to be less discussion in public about encouraging people to look to their pharmacist, rather than to their GP, for healthy lifestyle advice, minor ailments care and routine support. The all-party parliamentary group on pharmacy heard some great evidence from the LloydsPharmacy group about its diabetes foot service and inhaler check service, which enable people to get the most out of their treatment and can make their medication far more effective. Those kinds of extra services make community pharmacies incredibly valuable.

[Oliver Colvile]

Does my hon. Friend recognise that we need to make greater use of things such as opticians as well?

[Paul Scully]

My hon. Friend makes a very good point.

Independent pharmacies in Sutton conduct medicine reviews, which we have heard about, and often deliver to their patients’ homes. They therefore see people in their own environment, rather than in a GP surgery. They get to see what is left in the bathroom cabinet, forgotten about or set aside. Ignoring or forgetting to take prescribed medicines causes such a lot of waste. There is an estimated £300 million a year that could go to other front-line services. By seeing the patient in their own environment, the pharmacist can make an assessment based on the patient’s everyday life, rather than just a snapshot, which might be affected by things such as white coat syndrome.

Consultation room services, such as sexual health, smoking cessation and minor ailment services, have to be a good thing for the NHS and should be encouraged. From what I have seen in pharmacies, there is still too much of a disconnect in the exchange of patient information between GPs and pharmacists. If advice and treatment are to work, they must be done in full knowledge of the patient’s background and medical history.

I understand the concerns that have driven the review and the changes that we are debating. The current funding system encourages pharmacy companies to open numerous low prescription volume sites, especially with the guaranteed fixed payment of £25,000 a year, regardless of size, quality or local demand. Some 40% of pharmacies are in clusters of two or more, with 20% being within 10 minutes’ walk of at least two others. That is reflected in Sutton. There are three in Worcester Park, four in north Cheam and six in and around Sutton High Street.

My concern is that any closures that result from these changes are more likely to come from the independent portion—those pharmacists who go beyond the corporate approach, often offering services at no cost or at a loss, because it is the right thing to do; those who prioritise the service that patients need, rather than shareholder value. Responding to customers on a personal basis allows independent pharmacists to consider savings such as generic substitution. We talk about a seven-day NHS, but pharmacists need to be set free to offer a high street NHS.

The Government’s changes recognise much of what pharmacists’ bodies have been raising. The changes seek to move pharmacists away from being reliant primarily on dispensing income, which is more vulnerable in the long term, towards services. Repeat prescriptions and those who come in via the 111 service will be directed to pharmacies, rather than out-of-hours GPs. For the first time, pharmacies will be paid for the quality of the services they provide, not just the volume. There is much to be welcomed, but I urge the Minister to keep the impact of the changes on independent pharmacies, which are often family run, under constant review.

[Craig Mackinlay (South Thanet) (Con)]

My hon. Friend is speaking very well for the independent pharmacy sector. It is those pharmacies that we should be protecting the most, because they are the first triage that saves the NHS money down the line. They can save a lot of money for the general NHS drugs bill by knowing their patients well, knowing the GPs and suggesting something cheaper. I am not convinced that the Government have looked into that aspect closely enough.

[Paul Scully]

I thank my hon. Friend for his comments. I have spoken about generic substitution and some of the things LloydsPharmacy and family-run services are doing in the consultation room. Those things are to be welcomed, encouraged and boosted.

I urge the Minister, in the coming months and years, to keep the impact of the changes on independent, often family-run pharmacists under constant review, because I and many others in this place certainly will.