Rare Diseases Strategy

Mark Pritchard Excerpts

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett]

I thank my hon. Friend for that intervention. He is a great champion for his constituents. I share his hope in the Prime Minister’s commitment, made at an early stage in her office, and in a Minister who obviously understands rare diseases, having one herself, and who has made a clear personal commitment to resolve the issue. Having worked alongside the Department of Health for many years, I have been wanting to see this come to fruition. I am glad that we now have a leadership commitment in place to deliver it for the first time, at least in my memory of working alongside the NHS.

The UK is doing superb work and leading internationally on rare diseases. I hope that our all-party parliamentary group’s report will make a significant difference and help to steer the Department of Health to a place conducive to both the Minister’s requirements and ours. I look forward to hearing his response.

[Mark Pritchard (in the Chair)]

Before I call Margaret Ritchie, I will give some guidance. I am sure that hon. Members are aware that the spokesman for the Scottish National party will have five minutes, as will the shadow Minister. The Minister will have 10 minutes. This debate is due to finish at 5.30.

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[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship this afternoon, Mr Pritchard.

I welcome this important debate and I thank the hon. Member for Bath (Ben Howlett) for securing it and for his excellent introduction to it, although I am sorry that I missed the start of his speech because it started four minutes early before my hon. Friends and I were in our places.

I also thank other hon. Members for their contributions this afternoon, including the hon. Member for South Down (Ms Ritchie), my hon. Friend the Member for Cambridge (Daniel Zeichner) and the hon. Member for Linlithgow and East Falkirk (Martyn Day), the spokesman for the Scottish National party, who all made excellent and insightful speeches.

As others have said, here in the UK one in 17 people will be affected by a rare disease at some point in their life, which equates to approximately 3.5 million people in the UK. It cannot go unsaid that those 3.5 million people have a wide range of symptoms, which vary from condition to condition, some of which we have heard about this afternoon. It is clear that there are common experiences that people with these conditions all share. As Rare Disease UK has estimated that it takes on average four years for a patient to receive a diagnosis, it is clear that there are many missed opportunities to help those people living with rare diseases. Each and every person who suffers from a rare disease deserves the necessary support to live a fulfilling life.

That is why it was welcome that in 2013 the coalition Government published their UK-wide strategy for rare diseases, which was seen as heralding a new era in the treatment and care of rare disease patients across all four home nations. The 51 recommendations are all to be welcomed, as they each take us a step further in addressing concerns about the care and treatment of rare diseases, and the strategy’s aim is to make sure that no one gets left behind just because they have a rare disease. It is an aim that Labour welcomes wholeheartedly.

Most of my contribution to this debate will focus on the issues with the implementation of the strategy, but I will take a moment to mention some of the positives. It is welcome to see that the National Institute for Health Research has launched the Rare Diseases Translational Research Collaboration—I will use the acronym, RD-TRC, as it is much easier to say—which aims to empower patients to engage and become involved with research and research funding decisions. To date, the NIHR has invested £4 million in the RD-TRC, and the programme is expected to continue for another five years, with a £5 million investment.

Work has also been done by Public Health England on data recording, to bolster diagnosis and early intervention, and we have also seen Health Education England collaborate with the National School of Healthcare Science to produce two educational videos for healthcare professionals, in order to raise awareness of the problems faced by families who have a child with an undiagnosed condition and the importance of considering whether it is a rare disease. All this work is to be welcomed and should not go unnoticed.

Yet the sticking point in all of this, and the reason why we are here today to debate this issue, is that the Government are digging their heels in and not getting on with drafting an implementation plan, while the other home nations’ Health Departments are making significant strides. That betrays not only those patients living in England who wish this strategy to be properly implemented but the strategy itself, which stated that all four home nations must see the vision behind the strategy become a reality by 2020. It also undermines all the excellent work that I mentioned previously to implement the recommendations.

The strategy was published in 2013 and we are now just three years from the date set for the vision to be realised. However, the all-party group that the hon. Member for Bath so ably chairs has discovered that the Department of Health does not intend to publish an implementation plan, believing that it should be published by the NHS. Yet the NHS has said that it does not intend to do this either, as it does not have responsibility for other arm’s length bodies of the Department of Health. I want to ask the Minister why. I want to know why we are seeing patients and their families caught in this dispute between the NHS and the Department of Health. This situation cannot continue; there are people suffering right now who need this strategy to be implemented correctly.

I have briefly mentioned the report by the all-party group on rare, genetic and undiagnosed conditions on the lack of an implementation plan, but I know that it covers other issues as well, and I will take a moment to touch on some of them. One of the main issues raised was the lack of communication between organisations responsible for implementing the various aspects of the plan, and the failure to provide patients, families, doctors, industry experts and patient organisations with updates on progress of the strategy. That is deeply worrying, as it is important that people are made aware of the issues that affect them so personally. Therefore, it is not surprising that the all-party group heard from more than 300 patients that widespread disillusionment and disappointment had become the common feeling about the strategy, despite the optimism felt when it was published five years ago. The sting in the tail is that there are implementation plans for the strategy across the UK, with the exception of here in England. I share the frustration of the many others who are affected by the Government’s complacency. The Department’s rationale for not providing updates on progress is that patient organisations can disseminate information to patients and families, but it sadly fails to grasp that those organisations and charities are often very small and do not have the resources to pull together updates and send them out.

Also, issues that have not been worked on since the strategy was published have been identified, including prevention and identification of rare diseases, improving care pathways and failing to implement structures that would facilitate collaboration between the four home nations. In his response, I would be grateful if the Minister could provide us with an update on those points and tell us what his Department plans to do to see the recommendations through.

The strategy is now five years old, and although there has been work to see it realised, it has not gone far enough. The failure here is that the Department of Health in England is not fulfilling its duty to draft an implementation plan to realise the visionary goals in the strategy, which undermines the work already under way and hinders any future work. The Minister must set that right, and I hope he plans to do so today. He has the power to rectify the situation and he cannot be complacent when it comes to supporting people living with rare diseases.

We are not talking about a handful of people; many of our own constituents are being failed by the Government, and all they ask for is that the Department of Health do what Departments in the other home nations are doing and provide an implementation plan to enable the strategy to be fully realised and make the impact it was intended to have. I once more thank the hon. Member for Bath. I hope that the debate will make the Minister think again about the Government’s opposition to taking responsibility for a plan, and that he will honour the whole vision of the strategy, instead of cherry-picking from it.

[Mark Pritchard (in the Chair)]

If the Minister does not use all the time allocated—10 minutes is a guide, but clearly there is more time on the clock—it will allow me to call the hon. Member for Bath for a brief winding up, but that is entirely in the Minister’s gift.

Community Pharmacy in 2016-17 and Beyond

Mark Pritchard Excerpts

1st reading: House of Commons
Thursday 20th October 2016 Commons Chamber

[David Mowat]

I repeat that we absolutely recognise the vital role that community pharmacies can play, and we want to make them move towards an even more vital role by providing more services, which is what pharmacies want to do, rather than getting all their money from their dispensing activities, as they do at the moment. High quality pharmacies will be in a position to really prosper in the new world that we are talking about.

[Mark Pritchard (The Wrekin) (Con)]

I warmly welcome the Minister’s statement. If there are closures, what additional support will be given to the pharmacies that are left, particularly to enable them to take pressure off GPs in the community?

[David Mowat]

The volume of business is gradually increasing. If a pharmacy in a cluster should close, that business will be redirected to other pharmacies in the cluster. They will then be in a position to expand, take on more people and all the rest of it.

Meningitis B Vaccine

Mark Pritchard Excerpts

Monday 25th April 2016 Westminster Hall

[Several hon. Members rose—]

[Mark Pritchard (in the Chair)]

Order. Before I call Mark Durkan, may I ask everybody to check that their mobile phones are on silent mode? It affects the broadcasting equipment—[Interruption.] I rest my case—somebody does have their phone on.

Secondly, I am aware that there was an important health statement in the House today. Some colleagues wrote to say that they would arrive late, and I thank them for that courtesy. If Members stand, they will be called, subject to the order of speakers given to me by the Speaker’s office.

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[Several hon. Members rose—]

[Mark Pritchard (in the Chair)]

Order. Normally I would call a Member from the Opposition Benches at this point. It would be Hywel Williams in this case, but he has not been here for one hour of the debate, for reasons that he has explained to me. I have some discretion, but I think it is only fair that I call now Peter Heaton-Jones, who has been here for the whole debate, and then Dr Sarah Wollaston, who was in the main Chamber for the health statement and is Chair of the Select Committee on Health.

Huddersfield Royal Infirmary

Mark Pritchard Excerpts

Tuesday 2nd February 2016 Westminster Hall

[Ben Gummer]

May I just respond to my hon. Friend’s original point?

We must remember that the PFI deal is borne by the entire trust, so it is not as if it fixes precisely on one site or another; it does not influence the decision of where to go. It could be possible to run a cold site on the PFI hospital and fill the hospital that way. It does not have to be filled with the particular function that the CCG wishes to put there. The CCG just believes that the buildings there are better, more suited and more modern—the hon. Member for Huddersfield would agree with that assessment—for the particular purposes it wants to put there.

It is for the CCG to justify that; I cannot speak with any authority about this, because I do not know. However, I really do not think that the PFI has a bearing, because no matter where the services are put, the PFI deal will still exist. All I am saying is that I want to be realistic about our ability to unpick every single PFI in the country, because in many cases they have been very carefully worded and agreed in a lawyerly fashion—

[Mark Pritchard (in the Chair)]

Order. I remind colleagues and the Minister, first, that the Minister should face inwards, so that we can get a good shot of him on camera. This debate is being televised—just a gentle reminder. Secondly, those Members who want to make comments should stand up to do so, so that the Hansard writers can identify who they are. Thank you very much indeed.

[Mr Sheerman]

Thank you, Mr Pritchard. I hope this is a useful intervention. We have written to the Public Accounts Committee to ask it to have a look at this particular PFI, on the basis that it would be a very good one to try to unpick. That might be helpful to the Minister and us.

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[Jason McCartney]

I thank the Minister for his thorough and detailed response, which we will obviously pick through. I thank him also for his specific commitments. We will have a cross-party meeting with the Secretary of State for Health once the consultation is up and running, which is imminent, as we want to get the best value from it. The Minister’s team is considering the PFI deals, including the one at Calderdale. I assure him that he will be seeing a lot more of not just me but my parliamentary colleagues here in the coming months, as the consultation gets under way.

I also thank my parliamentary colleagues for their contributions. I work with the hon. Member for Huddersfield (Mr Sheerman) on so many issues. We co-chair the all-party Yorkshire and North Lincolnshire group. Many people who watch debates in Parliament do not realise that we work cross-party on important issues for our local areas. Such working is not uncommon, and it will continue.

The hon. Member for Dewsbury (Paula Sherriff) gives an extra perspective, and her passion really came across loud and clear today. I thank the shadow Health Minister for his kind comments and support, and the hon. Member for Batley and Spen (Jo Cox), who was here earlier. The hon. Member for Barnsley Central (Dan Jarvis) was here, too, for much of the debate, although he could not stay because of other pressing commitments; his presence shows how our region is closely considering the issue. Also, of course, there was the hon. Member for Strangford (Jim Shannon), from Northern Ireland, who talked about similar issues in his part of the world.

The consultation is about to start and this is where the battle begins—with me and my parliamentary colleagues, the community campaign, the volunteers and the 46,000 people who are now in the Facebook group. We have firm, clinical evidence and logical, safe, patient-led reasoning to persuade the GPs on the clinical commissioning group to keep our A&E at Huddersfield Royal infirmary. We will fight all the way. We have worked together so far and will continue to. We will say once again, “Hands off our HRI, we’re going to save our A&E at Huddersfield!”

[Mark Pritchard (in the Chair)]

I thank colleagues for their co-operation today. My intervention earlier was due in part to some of the microphones not working today, which is unusual. We will have an inquiry into that. But do not worry; Hansard is here and everything was captured on television also.

Question put and agreed to.

Resolved,

That this House has considered A&E services at Huddersfield Royal Infirmary.

NHS Bursary

Mark Pritchard Excerpts

Monday 11th January 2016 Westminster Hall

[Several hon. Members rose—]

[Mark Pritchard (in the Chair)]

Will Members who want to speak, even if they are on the list, please stand clearly rather than squat, in order that we can work out whether we will have to impose a time limit later? Thank you very much indeed.

Oral Answers to Questions

Mark Pritchard Excerpts

Tuesday 5th January 2016 Commons Chamber

[Jane Ellison]

I certainly do not recognise the shadow Minister’s characterisation of the cancer drugs fund. Some £1 billion has been committed to it and it is being reviewed. The fund was introduced by the previous Government, and we are very proud of it. It has made a big difference to the lives of more than 80,000 patients. More widely, the recent cancer taskforce published its report, “Achieving world-class cancer outcomes”, and it made many recommendations, which are particularly relevant to rarer cancers and blood cancers, many of which focus on improving access to diagnostic testing.

[Mark Pritchard (The Wrekin) (Con)]

Of the 7% of the population that will suffer at some point in their life from a rare disease, 75% are children. Unfortunately, 30% of those will not reach their fifth birthday. What more can be done for Great Ormond Street hospital and for Birmingham children’s hospital, which do such excellent work?

[Jane Ellison]

My hon. Friend is quite right to highlight the number of people who will be affected by such diseases. There are between 6,000 and 8,000 rare diseases. Among the things that the Government are doing that will make a really big difference to some of the institutions that he mentioned and others, and particularly to sufferers, is the 100,000 genomes project, in which the Government have invested. The creation of a network of genetic medicine centres will underpin that further development of genetic testing services. As a very large proportion of rare diseases are genetically based, we want to make significant progress with that genomic work.

Operational Productivity in NHS Providers

Mark Pritchard Excerpts

Wednesday 1st July 2015 Westminster Hall

[Mark Pritchard (in the Chair)]

Given the temperature today, colleagues may remove their jackets if they so choose.

[Dr Matthew Offord (Hendon) (Con)]

I beg to move,

That this House has considered operational productivity in NHS providers.

It is a pleasure to serve under your chairmanship, Mr Pritchard, and I welcome the Minister to his role. I believe this may be his first Westminster Hall debate, and I am greatly pleased that I am the Member who secured the debate.

The national health service featured heavily in the recent general election campaign. I recall speaking at several hustings and telling my constituents that I recognised that this Parliament would witness an increasing demand for NHS services. On occasion I was challenged on how the additional £8 billion highlighted by the Stevens review would be found. My response, then and now, is that the greatest efficiencies can be identified within current services without undermining patient care. Such a view is shared by Simon Stevens, but most interestingly it is a view shared by others, including my constituents Philip Braham and David Green, who established a medical recruitment company called Remedium Partners. I am pleased that both gentlemen are here today in the Public Gallery.

Having met Mr Braham and Mr Green before the election, I was eager to re-establish contact with them earlier this month to discuss their ideas about NHS efficiency in employment. It is possible that more cynical Members will say that this is more evidence of the Conservative party seeking to introduce greater private sector involvement in the NHS for others to make a profit, but that would be an incorrect assertion to make. In fact, I found our discussion focusing on opportunities to save the NHS more money and prevent its resources being plundered by unscrupulous individuals.

The publication of Lord Carter of Coles’s interim report, “Review of Operational Productivity in NHS providers”—hence the title of this debate—two days before our meeting could not have been more fortuitous. The report outlined four areas where Lord Carter believes greater efficiencies could be achieved to allow additional moneys to be spent on front-line care. One objective in seeking today’s debate was to air the issues and to place them on the public record. Lord Carter’s efficiencies within the NHS include saving £1 billion from improved hospital pharmacy and medicines optimisation, £1 billion from the NHS estate, £1 billion from improvements to procurement management, and £2 billion from improvements in workflow and encompassing workforce costs.

Workforce costs is the area that I intend to focus on in this debate, as I have discussed it directly with my constituents and because just a 1% increase in workforce productivity could achieve as much as £400 million of savings. This is a significant and important area of the work of the NHS. Lord Carter believes that the £2 billion figure would be achieved without making anyone redundant and without seeking to increase the responsibilities of staff, nor would it mean decreased levels of remuneration for future employees. What it does mean is a greater command of management control on non-productive time, which are the periods when staff emphasis is not on direct patient care—days and shifts of annual leave, sickness and training. It also includes better management of rosters, improved guidance on appropriate staffing levels and skill ranges for certain types of wards.

The NHS is one of the largest employers in this country, employing more than 1.3 million staff in more than 300 different types of roles. In the last year that figures were available, the cost to the NHS budget was £45.3 billion, the largest proportion of the £118 billion budget. The cost of nurses alone totals £19 billion, and with the increased number required for safer staffing and a third increase in the number of nurses leaving the profession in the past two years, the reliance on agency nurses will see this figure rising.

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[Mike Weir]

Again, the hon. Gentleman makes an excellent point. One difficulty with the NHS is the cost of medicines. All our constituents are pushing us to get costly new medicines on the NHS for diseases, including rare diseases. They might be extremely costly in the first instance for good reasons, but demand always increases costs in the system, and it is difficult to deal with that. The pharmaceutical companies have a role to play in that, because much of their business comes through the national health service. If cost savings can be made by negotiating with those companies, that should be done. I am sure that the Secretary of State will at all times try to persuade them on that point, but I am not so sure how well he will do, given the competing pressures from constituents and Members for new drugs to be made available on the NHS. None of these issues are easy, and I have some sympathy for Ministers who are struggling with them, especially given the pressures on all areas of Government spending, but I urge caution in looking for simple solutions.

[Mark Pritchard (in the Chair)]

While it will be unorthodox, it is not irregular for me to call Jim Shannon, who briefly left the Chamber during a very good speech from Karin Smyth that was slightly shorter than I expected.

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[Andrew Gwynne]

My hon. Friend hits the nail on the head, describing the complexities of the NHS in England. We have talked for several years in the House of Commons about the need for a properly integrated health and social care system. My hon. Friend has set out a prime example of the reason we need that.

I anticipate that the Minister will argue that some of the inefficiencies we have discussed will be addressed through integration. My problem is that many of the competition rules and requirements in the 2012 Act work against such an integrated health and social care system, even though both sides of the House want it. The Government will have to look carefully at the role of some of the rules and regulations they introduced, when local health economies reach the point of developing integrated care models. It is clear that representatives of a hospital trust, local authority adult social care and children’s care services, and the clinical commissioning group cannot sit around a table to plan an integrated health and social care system while many of the requirements placed on the NHS by the 2012 Act continue to apply.

To return to the issue of transfer and delays in hospitals, we all know that the NHS operates something of a just-in-time system. Such systems are used in industry, particularly for international stock control, and they make sure that nothing is wasted. There is little room for slack: if a patient is admitted for longer than necessary because of avoidable shortfalls elsewhere in the system, that can lead to the atrocious scenes that happen when desperately sick and injured people are left lying in corridors. I think that on one occasion, somewhere near the constituency of my hon. Friend the Member for Bristol South, someone was treated in a tent in a hospital car park. We hoped such images had long gone from the NHS.

I want to say politely but firmly to the Minister that the NHS is affected by what goes on in the social care system. Social care cuts are to all intents and purposes NHS cuts. I hope that he will get that message loudly and clearly and that the Prime Minister will stop insisting otherwise. All that demonstrates, as my hon. Friend the Member for Bristol South eloquently stated in her intervention, the need for a properly joined-up service. Labour Front Benchers have argued for that for some time and the previous Government were moving towards it. I am happy to provide guidance to the Minister on what we think should happen to that end, and to provide stern criticism if Ministers do not deliver.

I also want to talk briefly about the cost of agency workers, which the hon. Member for Angus (Mike Weir) touched on. The Health Secretary has belatedly sought to address that issue, but it has been years in the making. Ministers will know that hospitals have consistently cited recruitment difficulties, particularly for qualified nursing and medical staff and in accident and emergency departments. It is welcome that the number of training places has been increased in recent years, but it was a short-sighted mistake to cut the number of those places early in the previous Parliament. That has led in part to the present recruitment issues.

The Minister will know that the rising number of staff suffering from work-related stress has resulted in even more workforce pressures in the NHS. He will also know that the decision to cut nurse training posts has meant that many hospitals must either recruit from overseas or hire expensive agency workers. Health Ministers must make strong representations to Home Office Ministers, because if there was ever a sign of disjointed Government decisions, it was the recent announcement of changes to immigration policy. As we have already discussed, those changes may cause massive problems to some NHS trusts across the United Kingdom that already face challenges and have recruited from overseas.

The savings that the NHS will need to make in coming years are far more difficult than the low-hanging fruit or quick wins that some may think are available. All of us across the parties and across the constituent parts of the United Kingdom need to acknowledge that there will be no quick fixes to the challenge. There should be no mistaking how difficult things have been for many trusts in the past few years. The coming years will be just as difficult for them, if not more so. I hope that the Minister will agree in that context that we need a proper open debate, with all the facts, figures and information before us about where we can make the savings, and how we can ensure that more of the NHS’s funding is spent on what it does best—delivering high-quality patient care across the United Kingdom.

[Mark Pritchard (in the Chair)]

Order. Before I call the Minister I remind hon. Members of the new standing orders that allow the mover of the motion to wind up if there is time available. I am sure that the Minister will be mindful of that, with 30-plus minutes on the clock.