Orkambi
Rachael Maskell Excerpts(5 years, 9 months ago)
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Bill Wiggin
I am sure that the hon. Gentleman’s constituents will be grateful to him for raising the issue in the House this evening.
Every week, five babies are born with the disease, according to Great Ormond Street Hospital, and every week two young people die as a result of cystic fibrosis. The disease accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. There are two main ways to treat cystic fibrosis: conventional treatments target the symptoms, and precision medicines such as Orkambi tackle the cause of the condition. For conventional treatment on the NHS, the average waiting time to be admitted to hospital is 45 days.
Orkambi presents a relatively safer, more effective and clinically meaningful alternative. In treating the root causes, it reduces lung damage and cystic fibrosis-related diabetes, and improves pancreatic function. The drug has been approved by the European Medical Association, and the Food and Drug Administration in the United States. It avoids the high risk associated with organ transplants.
Orkambi treats the F508del mutation, which around 50% of people with CF in the UK carry. Essentially, the drug permits more chloride ions to pass into and out of the cells. This helps to keep a balance of salt and water in affected organs. Ivacaftor is one of the active substances in Orkambi. It increases the activity of the defective cystic fibrosis transmembrane conductance regulator protein, thereby making the mucus less thick. Decline in lung function is the most common cause of death for people with cystic fibrosis and, although not a cure, Orkambi has been found to slow the decline in lung function by 42% and reduce hospitalisations by 61%.
Rachael Maskell (York Central) (Lab/Co-op)
Before coming to this place, I was a respiratory physio and worked with many people with cystic fibrosis. The cost of hospitalisation and treatment far outstrips the cost of this drug for many people with cystic fibrosis. Should not the National Institute for Health and Care Excellence change its criteria and look at the value of life, instead of only the day-to-day cost of this drug?
Bill Wiggin
No, I do not agree. The purpose of this debate is to a show an alternative that allows NICE to spend taxpayers’ money on drugs for other conditions while still allowing cystic fibrosis sufferers to have access to this vital drug—and not just to Orkambi, but to the next generation of the same sort of drugs. Bear with me because we have not got to the good bit yet.
In July 2016, NICE recognised Orkambi as an important treatment, yet was unable to recommend the drug for use within the NHS on grounds of cost-effectiveness. The drug is estimated to cost around £104,000 per patient per year and must be taken for life. Orkambi is not provided by the NHS, except in rare cases on compassionate grounds. It remains patent to its manufacturer, Vertex Pharmaceuticals, under UK patent law. In July 2018, NHS England made what it said was its best and final offer to Vertex of £500 million over five years. This was described by the NHS as the “largest ever financial commitment” in its 70-year history. Tragically, Vertex rejected the offer.
We all know that it is essential that a solution is found as soon as possible to make the drug available, as every day counts in slowing the progress of the disease. In an email to me, Vertex states that it
“is committed to finding a sustainable solution for access to our medicines for Cystic Fibrosis patients, including Orkambi”.
That is not quite the impression I have received so far. I sincerely hope that that is indeed its highest priority.
The drugs that constitute Orkambi—Ivacaftor and Lumacaftor—can be synthetically developed at low cost, yet their price remains inaccessibly high.
NHS Long-term Plan
Rachael Maskell Excerpts(5 years, 10 months ago)
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Matt Hancock
Yes. I have discussed the proposals made by my hon. Friend and his Northamptonshire colleagues with the Secretary of State for Housing, Communities and Local Government. We are both enthusiastic to see what can be done, and I invite my hon. Friend into the Department to speak to my officials about how this could be done. His proposals are, by design, entirely consistent with the proposals in paragraph 1.58 of the long-term plan, and I very much look forward to working with him and his Northamptonshire colleagues on making it happen.
Rachael Maskell (York Central) (Lab/Co-op)
Health visitors are vital to delivering early intervention and prevention, yet their numbers are in freefall—falling by 23.5%, or 2,425 health visitors, since October 2015. Health visitors are now working with dangerous caseloads, so when will the Secretary of State ensure that we have safe delivery of health visiting services?
Matt Hancock
The hon. Lady is dead right. Of course, health visitor numbers went up very sharply between 2010 and 2015. In fact there is a proposal in the plan, and the NHS will be discussing with Government the best way to commission health visitors. Health visitors are clearly a health service but, at the moment, they are commissioned by local authorities. We look forward to working with the NHS and with the Ministry of Housing, Communities and Local Government on how best we can commission health visitors in future, because they are a critical part of maternity services.
NHS: Staffing Levels
Rachael Maskell Excerpts(5 years, 11 months ago)
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Rachael Maskell (York Central) (Lab/Co-op)
I congratulate my hon. Friend the Member for Batley and Spen (Tracy Brabin) on calling this vital debate.
I remember the challenging years of the mid-1990s, when I was working as a physio in the NHS. During that crisis time, I never knew when I would get home. Today’s scenario reminds me of the dying years of a Tory Government—the parallels are so strong.
In York, I read the Care Quality Commission reports in detail, and although the care given by our NHS staff is excellent, the real challenge that I pull out of the results of CQC reports is the staffing crisis. My local hospital currently has 59 doctor vacancies, and there are 580 nursing vacancies in bands 4 to 7, 312 of which are in bands 5 to 7. The trust has done everything it can to recruit. It went to Spain and recruited 40 Spanish nurses, 37 of whom left after a very short period. The reality is that NHS staffing is in crisis and that affects patient care.
Last year, the trust had to spend £8.5 million on agency staff. That pushed a trust that is already struggling because the funding formula does not work for York into further deficit, which has an impact on its control and on the resources it can get for the winter crisis—York had some of the highest levels of influenza last year. The Minister, therefore, must ensure that the money works, as well as addressing staffing.
I want briefly to look at primary care because, as we have heard, we need early intervention across all ages to keep people out of hospital. Rightly, the Government looked to increase the number of health visitors, and by 2015 the figure was up to 10,309, but since then we have seen a 23.8% fall, down to 7,852, meaning that young people are not getting the input they need. School nursing figures have also fallen by 25% since 2010. So we have a real crisis in our primary care workforce, and also in mental health, as the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) said. Certainly we feel that in York, whether in the community or the hospital environment.
Rachael Maskell
I am going to continue.
The trust is doing everything it can to recruit, but it is impossible to recruit because the national pool of mental health staff is far too small. Therefore, it is vital that we consider the solution, which comes down, as has been said, to workforce planning. We need a partnership approach to planning the workforce. We need to understand the changing demographics and the increasing mental health challenges in order to put the right planning in place, but trusts will not be able to recruit unless the staffing framework is right. The removal of the bursary scheme has been seriously detrimental, particularly to the recruitment of mature students into nursing. People are giving up a job, but their staying in the profession for longer will pay dividends. Students have to pay to travel to placements, and I remember what that was like, so it is really important that they have bursaries.
Secondly on workforce planning, we need to look at how we educate healthcare professionals across the board. I remember discussions at a national level with the trade unions on that very issue, about needing to find a different way. In some countries they bring a real foundation into NHS training so that everyone works together in the first 18 months or two years of their training and has a breadth of understanding of medicine before going off to specialise. We, instead, train in traditional old silos of jobs that have clearly blended over the years, and we must look once again at how we structure that.
Thirdly, we need to look at the “Agenda for Change” package. There is no doubt that it is hard to recruit because people are poorly paid in the NHS and can be better paid elsewhere. Given the stress levels and the antisocial hours that people work, we need to look once again at the remuneration of our NHS workforce. Finally, the knowledge and skills framework has consistently been underutilised by the Government and NHS employers, and it is vital that we go back to that framework of professional development in the NHS.
Nursing: Higher Education Investment
Rachael Maskell Excerpts(6 years ago)
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Eleanor Smith
I do, and I will talk about that in my speech and touch on the lack of nursing students coming into those particular areas because of the bursary’s disappearance.
Rachael Maskell (York Central) (Lab/Co-op)
My hon. Friend is making a very sound speech. Does she agree that it is a completely false economy that, as a student nurse told me just today, of the 45 recruits to mental health nursing in his cohort, under the new financial regime only 18 remain on the course in its second year? We desperately need those nurses—what a price to pay!
Eleanor Smith
My hon. Friend is totally right. Again, I will address that point in my speech, but it is noted. I am glad that my hon. Friends are intervening, because it shows the importance of this debate on nursing and the lack of it. I am glad the nurses came to my hon. Friend and told her what it is like. The situation is beyond shocking. There are almost 42,000 vacant nursing posts in the national health service in England. Without policy and funding intervention, that will grow to almost 43,000 by 2023.
Prevention of Ill Health: Government Vision
Rachael Maskell Excerpts(6 years ago)
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Matt Hancock
Yes, I absolutely will. I am a huge fan of social prescribing. I essentially think that because drugs companies have a big budget to try to market their drugs—and of course many drugs do wonders—there is not the equivalent level of organisation to drive up the use of social prescribing. Examples like the one that my hon. Friend mentions are incredibly important.
Rachael Maskell (York Central) (Lab/Co-op)
The half-a-million-pound cut in public health in York has had very serious consequences, while nationally, with regard to the Government’s flagship project of health visiting—the crucial profession in improving outcomes—the number of health visitors has plummeted by 23% from the previous figure of 10,309. Why?
Matt Hancock
We are increasing the budget in future and making sure that we target it more on community services and making sure that we get more prevention rather than cure. I can look at the case of York; I can look right across the country at what we need to do. Making sure that we get better prevention is all part of that.
Budget Resolutions
Rachael Maskell Excerpts(6 years ago)
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Matt Hancock
As the hon. Lady knows, life expectancy is increasing, and we are forecast to see an increasing number of people live to a good old age. Indeed, the number of people aged 75 and over is set to double in the next 30 years. That is a brilliant achievement, which is in part down to the hard work of our NHS. Cancer survival rates are at a record high, strokes are down by a third and deaths from heart failure are down by a quarter. Of course, those successes have brought new challenges. The biggest health challenge we face is that people are living longer, often with multiple chronic conditions. The money is only one part of the plan to safeguard the NHS and ensure it is fit for the 21st century. The Budget delivers the funding, and later this year we will deliver the plan for how we will set the NHS fair for the future.
Rachael Maskell (York Central) (Lab/Co-op)
I have very little hope for the older people of our country given that the Government have cut £7 billion from the social care budget and replaced it with only £240 million. How is that safeguarding our old people for the future?
Matt Hancock
Of course, in Scotland social care is devolved, so—[Interruption.] And in York, the amount of money for social care is going up thanks to the decisions announced yesterday.
Social Care Funding
Rachael Maskell Excerpts(6 years, 1 month ago)
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Matt Hancock
I am grateful for my hon. Friend’s work in making the case for more support for adult social care in Solihull, and to support the NHS in Solihull through that. I hope the funding we have announced today will help in Solihull, and the people of Solihull should know they have an excellent champion who has helped them to get that funding.
Rachael Maskell (York Central) (Lab/Co-op)
To address delayed discharges, it is crucial that we have transitional care and extra care in place. Will the Secretary of State look at York’s proposal for building facilities on an adjacent site to make that happen?
Matt Hancock
That is an interesting proposal, and I have seen others similar to it. We are looking at the link with housing as part of the Green Paper, and I have been discussing that with the Department concerned. The point the hon. Lady raises is important. I note that £731,800 has been allocated today to improved adult social care in York, to take the pressure off the NHS in York this winter. I hope that she will acknowledge that fact.
Access to Orkambi
Rachael Maskell Excerpts(6 years, 4 months ago)
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Mr Lewis
I think that most people would accept that now is the time for a review of the criteria that are applied and the processes that are undertaken. Any organisation needs to be continually improving. We do not condemn NICE. In fact, we acknowledge that it has got many difficult decisions right, but it has also got some wrong. Time and again, the reason that it has got those decisions wrong—arguably—is that the criteria it is applying and the criteria it has been given by the Department of Health are out of date and flawed. I think we would all want to see a review of NICE’s remit and the way in which it carries out its work over a reasonable period of time. It would be helpful if the Minister would respond to that point when he concludes the debate.
Rachael Maskell (York Central) (Lab/Co-op)
My hon. Friend is making a very important speech. As I know from being a physio who worked with cystic fibrosis patients, when making an assessment of the cost of treating cystic fibrosis, we must look at the social cost, the economic cost and the immense cost of keeping somebody alive. Does he agree that Orkambi would be a solution to that, let alone addressing the human cost?
Mr Lewis
I entirely agree—my hon. Friend makes absolutely the right point. When there is an incomplete assessment in looking at value for money versus outcomes, that will lead to flawed decisions that are incredibly difficult to justify. We have a mismatch between the basis on which NICE is expected to make these decisions and appropriate processes. Instead of everybody hinting, “Yes, of course there’s a need to review NICE—of course that would be a good thing”, we would like to hear from the Minister a timescale as part of the response to the specific issue of Orkambi in terms of NICE’s roles and responsibilities.
Management of NHS Property
Rachael Maskell Excerpts(6 years, 4 months ago)
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Karin Smyth
I recognise that the management of NHS property is not the most enthralling subject, but many hon. Members from across the country will recognise that it is a growing problem in their constituencies. The problems are varied and many. My focus today will be on the community and primary care estate.
I will not talk about bricks and mortar or leaking pipes, or outline the detailed and manifold operational challenges posed by an NHS estate that in many parts of the country still relies on pre-1948 infrastructure. Instead, I want to talk about the places our constituents go to when they need care, where they welcome their children into the world and where they say a final goodbye to those they love. They are places where some of our most precious memories are forged, capable of delivering huge happiness and hosting unimaginable grief. They are hard-wired into our emotional DNA and the fabric of the communities in which they sit. They are places that are paid for by our constituents through their taxes, which our constituents feel ownership of and an enormous attachment to. It is in this difference that the notion of local or personal ownership is blown apart. The harsh reality is that our constituents do not own these properties. Moreover, they do not even have a say in how they are run or in their future.
Who owns them? Who runs them? How do they operate? How can users or stakeholders such as MPs influence change? Those questions are hard to answer as control of these special buildings is opaque to the point of absurdity. The lines of accountability are unfathomable and, as so many colleagues will know, incredibly frustrating to deal with. I have spoken to numerous colleagues across the House about these issues.
Rachael Maskell (York Central) (Lab/Co-op)
I am grateful to my hon. Friend for giving way, and grateful to the Minister for listening to my concerns about the Bootham Park Hospital site and intervening on that. A real programme of change for healthcare in York has now been put together. Does my hon. Friend agree that when looking at the estate it is important to develop plans that improve healthcare rather than seeing it just as buildings?
Karin Smyth
I agree. The building that my hon. Friend has been working on is iconic, and that case is a good illustration. My hon. Friend the Member for Bristol West (Thangam Debbonaire) has been dealing with a GP surgery in her constituency for a long time and can get no resolution. I have also spoken to my hon. Friends the Members for Stoke-on-Trent Central (Gareth Snell), for Stroud (Dr Drew), for Bishop Auckland (Helen Goodman) and for High Peak (Ruth George)—these problems are happening across the piece.
Oral Answers to Questions
Rachael Maskell Excerpts(6 years, 5 months ago)
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Mr Speaker
Order. I am sorry, but we have run out of time. However, the person whom I think has been standing the longest is Rachael Maskell.
Rachael Maskell (York Central) (Lab/Co-op)
Thank you, Mr Speaker. NHS Property Services intends to sell the Bootham Park Hospital site, but reinvesting in that site would make such a difference to the health needs of our city. Will the Minister ensure that that happens?
Stephen Barclay
I have met the hon. Lady, and she made her case in a characteristically powerful fashion. The matter is being looked at actively.