Community Pharmacies

Rachael Maskell Excerpts

Tuesday 23rd February 2016 Westminster Hall

[Derek Thomas]

That is absolutely superb—my next line is: “Community pharmacies have a vital role in giving advice and in diverting patients from GPs and emergency departments,” exactly as my hon. Friend said. In tourist areas such as Cornwall, they take their share of the extra demand during the height of the season. Most recently, my local community pharmacists administered flu jabs to increase uptake. Pharmacies regularly get prescriptions to patients out of hours when no alternative is otherwise available, and Cornwall has led the way, with ground-breaking work in enhanced services. That is an example of how community pharmacists are very much part of the solution to integrated community health provision.

Healthwatch Cornwall recently surveyed Cornish residents about access to community pharmacies. Some 69% of participants said that they regularly visit their pharmacy, and 74% of those felt comfortable talking to the pharmacist about their health, while 78% felt well informed by their pharmacists when taking new drugs and 93% said that the pharmacist was polite and helpful.

One constituent of mine, a retired doctor, Professor Dancy, wrote to me as follows:

“I am a warm supporter of Nigel, our local pharmacist, and proud to be so. He is always ready to help when I forget (as one does at the age of 95) to re-order a medicament, and when my doctor is unavailable, or just pushed for time, I do not hesitate to ask Nigel for advice, which I follow with a confidence that is always rewarded.”

Community pharmacists are highly trained and trusted healthcare professionals, qualified to masters level and beyond. Their knowledge base covers far more than just drugs, making them the ideal healthcare professionals to relieve pressure on GPs and other areas of the NHS. Equally importantly—perhaps even more importantly—community pharmacists are welcoming change and embracing new clinical opportunities.

However, the proposed funding cut will not sustain the transition from a supply-based service to the more clinically focused service that the Government desire and our patients deserve. Cuts will discourage progress and can only result in small, independent and much-loved businesses failing, at the expense of patients, the public and the wider NHS.

[Rachael Maskell (York Central) (Lab/Co-op)]

In York, the local authority has made cuts to smoking cessation services, as well as NHS health checks, and the community pharmacists I have spoken to have said that they see their future role as filling some of those gaps. However, with further cuts to community pharmacy itself, where are people meant to go—back to queues in GP surgeries?

[Derek Thomas]

I thank the hon. Lady for that intervention. That is exactly why we are having this debate. I want the Government to examine the value of community pharmacists and to consider how they can do some of the work—in fact, a large part of the work—that would save money for NHS acute services.

I am well aware that there is a need to secure better value for money in areas of the NHS. Over the weekend, I met four community pharmacists and they all talked of the opportunities to make savings that they have identified. They are willing and able to see more patients. Pharmacists give free, over-the-counter advice to thousands of people every day, promoting self-care and diverting patients from GP and urgent care services. However, it is estimated that £2 billion-worth of GP consultations a year are still being taken by patients with symptoms that pharmacists could treat.

Pharmacists want to have a greater role in prescribing drugs, so as to reduce waste. Last year in Cornwall alone, £2 million-worth of unused drugs were returned to community pharmacists to be destroyed. Pharmacists are best placed to reduce this waste. They want to do more to support people with mental illnesses; they are keen to provide continued care of people with diabetes and other long-term conditions; and my local community pharmacists want to work with the Department of Health to improve services, engage in health and social care integration, reduce drug waste and improve access to records, in order to support the giving of prescriptions.

--- Later in debate ---

[Kevin Barron (Rother Valley) (Lab)]

I congratulate the hon. Member for St Ives (Derek Thomas) on securing this debate.

I am the chair of the all-party group on pharmacy in Parliament and I have been for more than five years. I have a keen interest in public health and lifestyle issues, and I have quite enjoyed chairing the group. After the letter of 17 December, the all-party group—three Members of this House and one from the other place—met the Minister, on 13 January. We had what I described afterwards as “straightforward talking” about the letter—a letter that posed more questions about the future of pharmacy than it gave answers. The Minister was straightforward, and he said that one issue was that, in October of this year—so just for the second half of the financial year—£170 million will be taken out of the community pharmacy budget. That leaves a number of questions to be answered, including that of what will happen in a full financial year.

The Government make great claims about putting an extra £8 billion into the national health service, but the truth is that that £170 million, which is part of the £22 billion of efficiency savings, is being taken out of the NHS, so it is hardly new money. It is not the £8 billion—that comes in a few years’ time. We are talking here about major cuts to vital services.

Since the publication of that letter, it has become clear that as many as 3,000 community pharmacies could close in England alone—a quarter of them. How would that happen? Would it be by stealth, which is suggested in the letter and in the consultation currently coming out of the Department, or is there some sort of plan? We have seen in the letter, and in others, that if there is a 10-minute walk between pharmacies, that might be looked into, but there seems to be no plan whatsoever.

What we have to accept—I put to this to the Minister in that meeting on 13 January—is that pharmacists do not work for the national health service, yet more than 90% of community pharmacies’ income comes from the NHS. The idea that we could change that mechanism and close community pharmacies is outrageous. The pharmacists may not work for the national health service, but their income depends massively on it—I wish it did not.

For many years I have been promoting lifestyle issues and the idea of pharmacists getting paid for doing things other than just turning scrips over, but that is how it works at the moment and there needs to be some serious talking. What happens if someone who has a 10-year lease on a property they took over to run the local pharmacy is forced out of business? All those questions remain unanswered, yet there is the threat of up to 3,000 pharmacies in England closing.

[Rachael Maskell]

I am following the argument that my right hon. Friend is putting forward. Does he agree that, instead of cutting services, we should be looking at opportunities for community pharmacies to extend healthcare further into their communities? It should be about investment at this time, particularly in prevention, which is all about saving money further down the line.

[Kevin Barron]

I agree with my hon. Friend. That is one of the reasons I took over as chair of the all-party group more than five years ago. I believe that our pharmaceutical services should be taking that route of travel.

It would help if the Government provided details of how they will ensure access to pharmacy services in remote or deprived communities. If the market will drive closures, there will be chaos, and something substantial needs to be in place.

Mental Health Taskforce

Rachael Maskell Excerpts

Tuesday 23rd February 2016 Commons Chamber

[Alistair Burt]

The engagement of the NHS with the taskforce needs to be recognised and emphasised. The NHS set up the taskforce because it wanted to be clear about the state of mental health services and take a five-year forward view. That is what the taskforce does, but it goes beyond that to say that it has a 10-year vision, which I welcome. Not everything can be done in neat, parliamentary-cycle chunks, so it is important that people have a continuing sense of commitment. The certainty that my hon. Friend wants is demonstrated by the involvement of the NHS, the endorsement of the recommendation by the chief executive, and the work on transparency, which is important to us, to make sure that we can all see where money has been spent. That should hold clinical commissioning groups and the NHS to account on the expenditure issue.

[Rachael Maskell (York Central) (Lab/Co-op)]

Paul Farmer’s report highlights the fact that 50% of diagnoses of mental health challenges are made by the age of 14, and 75% are made by the age of 24. He also says in the report:

“Yet most children and young people get no support.”

Will the Minister explain what specific work will be undertaken to look at prevention and early intervention, including early diagnosis?

[Alistair Burt]

I thank the hon. Lady for her interest and her considerable knowledge of these issues, which she has raised a number of times.

There are two things to say. First, on expenditure on children and young people’s mental health services, £1.25 billion will be spent over the next five years to improve the baseline for child and adolescent mental health services, including early prevention. I would also mention the full roll-out of IAPT—improving access to psychological therapies—services for children by 2018. That is already in place for, I think, 70% of the country, and it will be completed by 2018. It is a way of ensuring that children have early access to the psychological therapies that they need. That is an important development, which I hope the hon. Lady welcomes.

Junior Doctors Contracts

Rachael Maskell Excerpts

Thursday 11th February 2016 Commons Chamber

[Mr Hunt]

I commend my hon. Friend for her campaigning on that issue. She could not be more right. Just before Christmas, a report by Professor Paul Aylin said that the mortality rates for neonatal children were 7% higher at weekends, which underlines just how important it is to get this right.

[Rachael Maskell (York Central) (Lab/Co-op)]

On 5 December 2011, the Government tried to cut unsocial hours for “Agenda for Change” staff. At a time when morale right across the NHS is so low, will the Secretary of State guarantee that he will not bring forward cuts, because the reason behind the unsocial hours cut that I mentioned was to introduce seven-day working?

[Mr Hunt]

We have no plans to do so, but I cannot be drawn any further, except to say that we do have to deliver our manifesto commitments. The specific issues that we have identified with respect to seven-day working relate to consultant and junior doctor presence, and that is what we are focused on putting right.

Bootham Park Mental Health Hospital

Rachael Maskell Excerpts

Wednesday 3rd February 2016 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

I beg to move,

That this House has considered the closure of Bootham Park mental health hospital.

It is a pleasure to serve under your chairmanship, Mr Bone. It has taken four months to secure today’s important debate about the circumstances surrounding the sudden closure of Bootham Park hospital. I am still waiting for the round table that I requested with the Minister, and for the vital independent investigation into what really happened at Bootham. Although City of York Council and NHS England are carrying out an operational review, but not a strategic review, we must remember that NHS England is not independent of what happened at Bootham.

Today, I will describe the story behind the headlines of how the system failed mental health patients in my constituency and put their lives at risk, why the issues cannot be ignored any longer, and how what happened at Bootham has national implications. Without urgent change, the problems could be replicated anywhere in the country. Two successive Care Quality Commission inspections in 2013 and 2014 highlighted risks at the 240-year-old hospital, including the line of sight around the quadrangle wards, ligature points and doors that presented suicide risks, and not enough staff. Those issues should have impressed upon all involved in the service that the setting was not safe and urgent action should have been taken, but even with the CQC report, inertia followed.

First, too many bodies were involved at Bootham Park. NHS Property Services Ltd owned the site. The commissioning was done by Vale of York clinical commissioning group. Leeds and York Partnership NHS Foundation Trust was the provider. York Teaching Hospital NHS Foundation Trust provided maintenance. English Heritage—now Historic England—had an interest in the listed buildings. Tees, Esk and Wear Valleys NHS Foundation Trust—TEWV—became the new provider from 1 October 2015. By the end, other bodies, including City of York Council’s health overview and scrutiny committee, NHS England, Monitor and the CQC, had a role in proceedings but, strangely enough, the safeguarding board did not.

The problem with the system was the unbelievable scope for too many organisations to blame one another for the lack of progress in addressing the CQC’s safety demands. I do not have the time today to run through each authority’s lack of action, but their cumulative inaction put lives at risk. There should be one authoritative body and one controlling mind, not different jurisdictions with different lines of accountability and different interests that do not relate to one another as they need to. They did before 2012. There must be a place where such matters can be settled. The Health and Social Care Act 2012 gives scope for confusion, which is admitted by those involved and evident from what happened. There are conflicting authorities, so there must be one clear and authoritative oversight of decision making in the NHS, so that everyone knows where responsibility lies. If clarity is needed, it should be quickly and easily established. This is about good governance.

Secondly, there was an issue with making things happen. Why did years pass without the CQC recommendations being implemented? How was that allowed to happen? The CQC stated the necessary improvements, but then the very bodies criticised are the ones who have to implement the repair plan. The lack of external oversight of the work meant failure and delay. External leadership must be provided, to ensure that the right solutions are expedited. Assignment to NHS Improvement would seem the obvious choice. The CQC’s enforcement policy is clearly not working, and who polices it? The CQC has powers, including when there are repeated breaches and when action has not been taken to remove risk, but they were not used. If an effective system was in place, there would be no slippage, confusion or blame, and patient safety would be at the forefront.

Thirdly, the service was to be recommissioned. There was clear dissatisfaction with the provider’s performance and an alternative provider was selected. However, a board member at the time has reported that the Leeds and York partnership trust did not invest in the required upgrades

“in case it did not win the contract”.

In other words, the contract interests of the provider outweighed patient safety, the problems were not addressed expediently, and the hospital was left in an unsafe condition.

[Julian Sturdy (York Outer) (Con)]

I thank the hon. Lady, who is my neighbour, for giving way and congratulate her on securing the debate. I agree with what she has said so far. Does she agree that the Leeds and York partnership not only failed at that point, but had failed for many months down the line? That is why we have to get to the bottom of how it behaved throughout the whole system at Bootham Park.

[Rachael Maskell]

The hon. Gentleman makes an excellent point. We need to get to the bottom of why there has been continual failure not only at Bootham, but in the general delivery of clinical services.

The board member’s revelation was shocking and demonstrated that the current system allows for interests other than that of patient safety to be put first. Leeds and York did not invest in mental health in York, which was noted by staff and patients alike, and let the service be deemed unsafe by the CQC not once but twice, and then a third time, following a third inspection, which I will come on to later. It is also clear that the other bodies involved were not able to accelerate the inactivity. It is not that nothing was happening; discussions were ongoing, and the CQC and the Department of Health knew that a plan was slowly being drawn up by the CCG-led Bootham Park hospital programme board to address the CQC report’s findings, but “slippage” was evident. However, it is clear that frustrations existed between the bodies and blame for inaction was passed from one to the other. People hid behind jurisdictions and clear leadership was lacking once again, which is why there must be external oversight.

How can we have a health system in which there is scope for other interests, lack of focus, delay, lack of enforcement and blame, and in which CQC findings are not managed as a priority? We are back to poor governance and poor frameworks, which is what this debate is really all about. Leeds and York lost the contract to provide mental health services for the Vale of York CCG to TEWV. The trust appealed the decision to Monitor last June. Leeds and York then ran a highly public and politicised campaign that showed it was not interested in improving patient safety at Bootham, only in contractual matters, as I witnessed when I met with its chair. Monitor rejected the appeal and TEWV became the new provider. However, TEWV understandably wanted to inspect the plans for the building from which it would be delivering its services. I stress that the Bootham Park hospital upgrade could only ever be a temporary step, as I outlined in my maiden speech on 2 June 2015. The only safe solution will be a new build.

The CQC made an unannounced inspection on 9 and 10 September 2015. I have been unable to ascertain if this was at their instigation or that of Leeds and York partnership, but it is clear that the 20 weeks’ notice for Bootham to be removed as a suitable location was shortened due to the Monitor appeal process requested by Leeds and York, which the CQC told me impacted on its processes. However, as soon as it was clear that Monitor had turned down the Leeds and York appeal, the CQC knew that the trust would deregister, and that TEWV would have to be registered. The CQC also knew of the safety risks at Bootham, and that repairs had not been made. The CQC therefore knew that it would not be able to register Bootham as a location for TEWV to deliver services. That prompts two questions. First, why did the CQC leave the inspection until September, which then led to a rapid closure? Secondly, why did it then wait over two weeks to announce the inspection’s outcome? A longer run-in would have given more time for transition. We must keep remembering that mental health patients were put at serious risk.

The third inspection found a worsening situation. In addition to the safety risks already identified, staffing levels were worse and unsafe, record-keeping was poor, the water was found to be at a scalding temperature, and the kitchen, lounge and activity rooms gave access to an urn, electrical wires, scissors and knitting needles. A long-standing leaky toilet was leaking urine and foul water to the ward below and there was a risk of Legionella. There were other poor maintenance issues—as the CQC’s inspectors were assessing Bootham, a piece of masonry fell from the ceiling.

The CQC reported more than two weeks later, on Friday 25 September, that Bootham Park hospital must close because of the ongoing safety risks. The need for closure by midnight on 30 September 2015 was because the CQC could not re-register the facility against the new provider as being safe, because it was not. However, if the current provider were to continue to deliver the service, other options would be available.

The Leeds and York trust chief executive said on that same day that if the Vale of York CCG at the eleventh hour did not transfer over the service at the end of the month and let Leeds and York continue to provide it, it could keep the hospital open as it would not have to re-register. He said it was important that that was achieved for months until repairs were addressed. Even as patients were being cast out of their beds and out of our city, contractual issues were being placed above patient safety. The hospital was given five days—including a weekend—to close.

The CQC fulfilled its registration remit, but that meant that the building’s registration was placed above the unsafe environment that sudden closure and relocation would place service users in. That highlights how process was the factor that closed the hospital. Patients were put at risk. There was no scope for review of the decision, no one to assess the balance of risks and transitioning arrangements and no one to agree more time despite the clinicians, patients, families and their MP all highlighting the risks.

Let me mention some of those risks: the closure of the place of safety, section 136 suite, so people in a crisis have to travel at least to Harrogate for an assessment and then on again for a bed for their own safety; the closure of acute beds, with in-patients moved as far away as Middlesbrough, creating a huge risk and insecurity; patients moved away from their support networks and families to strange environments; and the moving of 400 people engaged in out-patients’ services to new locations. I heard how one service user’s condition became so exacerbated on hearing about their move that they became seriously ill, and that is not the only story.

I have heard from a parent how their child totally withdrew—from food and from them—because he was very frightened, and they were fearful for him. I have since supported frightened service users and family members. Out-patients who were suddenly discharged were confused and one senior clinician said it would be a miracle if someone does not die.

The situation continues. We have the place of safety back and we hope that out-patients will also be back in the near future. The acute in-patients’ service will be placed in temporary accommodation from the summer, all being well. However, serious risks resulted from the decision and the deterioration of service users’ mental health occurred. Safety was put after process, with some of the most vulnerable service users placed in an unsafe situation. There was no one in the NHS under the 2012 Act who had the authority to weigh up the balance of risk and decide, when greater risk to the lives of service users could occur with the sudden move, that an alternative call could be made, such as properly planned transition. No intervention was made, not even by the Minister—in other words, no one has overarching responsibility for patient safety in the NHS. That was confirmed by all the bodies. This must change immediately.

The reason I am so vexed is that four months have passed and nothing has been done about the system. Lives remain at risk, were such events to happen elsewhere. My constituents ask me, and I ask myself: is it because we are in the north? Is it because it is mental health? Or is it because the Government are too proud to admit that their Act has created that risk, as before 2012 there was someone who made such decisions?

I know that the circumstances at Bootham Park are exceptional and I trust that this will not happen again, but it could. The lives of my constituents were put at risk, and harm to their health occurred. The system failed them. That is why I and my constituents are focused on the need for a fully independent strategic investigation. Through my work and the health overview and scrutiny committee’s processes and now their operational local review, issues have come to the surface, but an independent review must occur. Lessons must be learnt of the failures in the way that health bodies relate to one another, and the problems that there are with governance. My constituents deserve to have answers.

Serious risks to patients were created in the NHS, and that cannot be ignored. No one died, but do we always have to wait until it is too late for someone before problems are taken seriously and situations are investigated? Agreement to an independent investigation is overdue.

In closing, I want to thank the service users and their families and carers for their continual pressure to get answers as to what happened to their services. They have been extraordinary in these very difficult times and deserve a confirmation that their concerns about the system will be addressed. I again invite the Minister to meet them. I also want to praise the outstanding efforts of all the staff involved in trying to support this unnecessary crisis, and in particular Martin Barkley for providing the leadership as the chief executive of TEWV. After 40 years of working in mental health, Martin is standing down, but I trust that his legacy will be a new, state-of-the-art mental health facility on the Bootham site for York by 2019.

Minister, four months is too long to wait to meet, too long to wait to undertake an independent review of the situation, and too long for my constituents to get the answers they deserve. Lives were put at risk and harm occurred. I trust that we can move the situation forward today.

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Mr Bone, especially in the circumstances of the powerful case put forward by the hon. Member for York Central (Rachael Maskell), with whom I have been in contact pretty much since this incident started. We spoke on the telephone around the day things happened and I have been in regular contact since. It is true that we have not met in a round table, but that is not a decision of mine. We agreed that when there was a point to meeting all together, we would, but things had to happen and we had to go some way down the line before that. My door has always been open and the hon. Lady has always been able to speak to me.

[Rachael Maskell]

indicated dissent.

[Alistair Burt]

If she would like to deny that, I will be happy to sit down, but she knows full well that I have spoken to her regularly and I have been available. I will happily see her and her constituents at a time that is entirely appropriate: when there is something to discuss. I do not think that her charge is particularly fair.

[Rachael Maskell]

I am confused because I have been trying to get a meeting with the Minister—I have got correspondence for three months. I am therefore sorry if his office has let him down, but we have been trying to get a meeting, which senior clinicians also want to hold.

[Alistair Burt]

Let me be clear. I spoke to the hon. Lady at an early stage and first I advised that a debate would not be a bad idea to bring issues out. I was concerned that there might be delays with the trust in terms of what may happen with the new premises, but at the time of the incident there was no point in having a meeting about what would happen next. Since then I have genuinely not been aware of a request for a meeting. I am very happy to have such a meeting, but at the time it seemed sensible that we would wait until there was a point in having a meeting. We have met and passed each other pretty regularly in the meantime and, had there been a delay that had caused grave concern, it would have taken a matter of a second to say, “How about that letter —are we going to meet?” but I have not had that conversation.

May I thank my hon. Friend the Member for York Outer (Julian Sturdy) for his interest? We have spoken on this subject from time to time.

Those issues, however, are incidental. The hon. Lady’s interest has been sincere and consistent, and she highlights a pretty unhappy story in which there are circumstances that cause me genuine concern. I will first say a little about what we know about the circumstances and then what we can do next.

Bootham Park hospital could provide care to about 25 to 30 in-patients and about 400 out-patients. The Vale of York CCG had previously announced its intention to commission a new, state-of-the-art facility and is working with NHS Property Services Ltd and NHS England to press for funding. I understand that the intention is to provide a new hospital in York to replace Bootham Park by 2019. At this stage, I have heard no suggestion that that will not be the case.

[Alistair Burt]

I have not had those discussions at this stage, because my understanding is that the timelines are on track. I suggested to the hon. Member for York Central that if there were concerns about foot-dragging, I was very willing to have that conversation with other colleagues in the room, to ensure that the original stated timetable was stuck to. I was interested in whether there was any opportunity to bring that forward, but my understanding is that that is not the case. I will come to what happens next in a moment.

Until recently, as the hon. Lady said, the hospital was operated by Leeds and York Partnership NHS Foundation Trust. In October 2015, the Vale of York clinical commissioning group ended the relationship with that trust and asked Tees, Esk and Wear Valley NHS Trust—TEWV—to take over the provision of services.

Bootham Park is a very old building, at 200 years old, and is probably one of the oldest buildings in use for patients in the NHS. It is also a grade I listed property, which has not necessarily made things any easier over time. The hon. Lady said in her maiden speech:

“Bootham is not fit for purpose and the CQC concurs.”—[Official Report, 2 June 2015; Vol. 596, c. 512.]

She was entirely right. As such an old building, Bootham Park had a number of problems that modern buildings designed for healthcare services normally avoid, one of which was ligature points—in other words, fixtures or fittings that someone could use to hang themselves from. As the hon. Lady knows, that was sadly not a theoretical problem at Bootham Park, since a lady was found hanging in her room at the hospital in March 2014.

The inquest heard that in December 2013, CQC inspectors had already identified the ligature point that that lady later used, along with a number of others, and asked that it be removed. The CQC’s report, published in 2014, clearly said that there were a significant number of ligature risks on the ward, but that work was unfortunately not done by the trust. The coroner noted at the inquest that he would have expected management to see that the work was done.

The Leeds and York Partnership NHS Foundation Trust fully accepted that it should have done the necessary work. However, when the CQC returned to inspect the hospital in January 2015, it again identified risks to patients from the building infrastructure and a continuing need to improve the patient environment. Refurbishment had been taking place both before and after the January 2015 inspection. Work carried out since February 2014, at a total cost of £1.76 million, included a number of improvements. Among those was an attempt to remove all the ligature points, as well as an overhaul of the water hygiene system and other repairs.

The CQC inspected the hospital again in early September 2015. At that point, it once more recorded a number of familiar problems, although it acknowledged the effort the trust had made to deal with them. The CQC found insufficient staffing numbers; areas with potential ligature points that could have been remedied without major works; poor hygiene and infection control; poor risk assessments, care plans and record-keeping; an unsafe environment due to ineffective maintenance; areas deemed unsafe or found unlocked; and poor lines of sight on ward 6. Furthermore, part of the ceiling had collapsed in the main corridor of the hospital. The debris was cleared away but the area was not cordoned off, which meant people were still at risk of harm.

The building’s listed status meant that it was not possible to remove all potential ligature points. The quadrangle-shaped wards meant there could never be a constant line of sight for nurses to observe patients. Despite the money already spent, the systems for sanitation and heating were outdated. The CQC felt that despite repeated identification of problems at inspections, not enough had been done—the hon. Lady was quite right to point that out—or perhaps could be done to provide services safely at the hospital. Patients remained at risk. The CQC therefore took the decision, as the regulator, to close the hospital with effect from October 2015. The CQC and the Vale of York CCG both agreed, as the hon. Lady said, that the current estate was not fit for purpose.

The timing of the closure was unfortunate. Mental health and learning disability services in the Vale of York were due to transfer from the Leeds and York Partnership NHS Foundation Trust to TEWV on 1 October 2015. That meant the new provider was taking over as the facility was being closed down for safety reasons. However, when the CQC, as the responsible regulator, comes to the conclusion that a building is so unsafe for patient services that they cannot continue and that it cannot be made safe, the local NHS has no choice in the matter.

The hon. Lady spoke about the number of different organisations involved. I understand her frustration, and I am interested in looking at how that has happened. Different bodies have different responsibilities. Bodies’ not having separate responsibilities for regulation, supply, commissioning and so on runs other risks. She is quite right, however, that having such separation and so many different parties involved means we run risks. If people are ducking and diving to evade responsibility—I will come to that in a second—that is a risk too. There is no easy way to do this, but I am quite clear that bodies have specific responsibilities that they should live up to; I do not think that that is necessarily wrong, provided they all know what they are doing. This situation was particularly difficult.

Nearly two years had passed since the CQC identified serious safety issues at the hospital, which seems more than adequate notice of the problems. The CQC said that it could not allow the service to continue indefinitely or allow a new application to open services at the hospital until the risks to patient safety had been addressed. Ensuring continuity of services for patients immediately became a priority. By midnight on 30 September, eight patients had been transferred to facilities in Middlesbrough, two went to another facility in York and 15 were discharged home. Arrangements were made for some 400 out-patients to continue to receive services at other locations in York. That was a considerable undertaking for the local NHS and achieved under great pressure. It was, of course, not what patients needed or wanted. The change and speculation about what would happen was inherently unsettling.

The NHS had to get matters back to an even keel as soon as possible, and that is what has been happening since. As the hon. Lady said, there has been a recovery of the section 136 services at the hospital. The NHS now has an interim solution in the adaptation of Peppermill Court. The in-patient service for older men with dementia, formerly provided at Peppermill Court, will now be provided at Selby. TEWV started work this week on the development of Peppermill Court as an adult in-patient unit and intends the refurbished 24-bed in-patient unit to be completed by the summer. Out-patient clinics continue to be held at a number of locations in York, and TEWV hopes to move all out-patient appointments back to Bootham Park hospital later this month.

That is where we are, with one further caveat: the business of trying to find out what has happened and why. My understanding is that an external review has been taking place, involving a number of different bodies that have had responsibility and are now looking at this. It seems almost impossible for the review to be concluded without its findings being made public, which would be a good opportunity for people to examine exactly what has been done. I want to see that review’s findings. I want to see the questions that the hon. Lady has raised today answered, and I want a good, clear line of sight as to what has happened, how it happened and, as far as lessons learned are concerned, how to ensure that this could not happen again in the rest of the system, as she says.

Based on what the review says, I will have further thoughts about the questions the hon. Lady has asked. Until we see the review’s findings, we will not know how complete it is or the answers to all the questions. Let us see the review’s findings first. If it is plain that the review is inadequate and leaves things unsatisfactorily handled and dealt with, with questions still arising, we will need to have a conversation at that stage. It might be appropriate, after the review has concluded, to have a round table and use it as an opportunity to have that conversation. However, until I have seen the review’s findings, I cannot decide whether there is anything further to be done at this stage. I want to ensure that the questions are answered, and that there are ramifications across the system. We also want to make progress with the new hospital. Let us see what comes out of the review, and then we will meet again.

On the hon. Lady’s request for a meeting, I have just been handed a note—we had an email from her office on 15 January. We are now going through the invitation process but have not responded.

[Rachael Maskell]

I was chasing up.

[Alistair Burt]

If there has been correspondence that has not been answered, I apologise, but as the hon. Lady knows from my previous contact with her, she can come and see me, and we will sort that out as soon as we can.

NHS Trusts: Finances

Rachael Maskell Excerpts

Monday 1st February 2016 Commons Chamber

[Ben Gummer]

I can give my hon. Friend that reassurance. Every Monday when I meet leading officials in the NHS, the people in the room are from the Care Quality Commission, NHS Improvement and NHS England. We make joint decisions. That is important because the system has to work as one. If the different parts pull in different places, we will not provide the solutions that we need. That is what has happened throughout the history of the NHS. For the first time, we have a system-wide response to the challenges facing the health service.

[Rachael Maskell (York Central) (Lab/Co-op)]

The CQC is downgrading trusts such as York Teaching Hospital NHS Foundation Trust owing to the national NHS staffing crisis. In addition, the trust will have an £11 million deficit for the first time at the end of this year. What risk assessment did the Minister make in respect of patient safety before the Government agreed to endorse NHS Improvement’s letter that advises trusts to cut headcount?

[Ben Gummer]

The hon. Lady is wrong. The CQC is not downgrading any trusts. It provides a very important function in the NHS that did not exist before, which is to give open and transparent accounts of how good the quality is in individual trusts. For the first time, patients can see whether their trust is safe, well led and effective. That means that there can be a proper and solid response where there are failings. In too many parts of the NHS, there is not the level of quality that other parts deliver. The CQC shines a light on where we need to improve. Our job, as part of the system with NHS Improvement, is to make those areas measure up.

William Mead: 111 Helpline

Rachael Maskell Excerpts

Tuesday 26th January 2016 Commons Chamber

[Mr Hunt]

The hon. Lady is right about the importance of involving patients when such tragedies occur, and I said in my response to the urgent question how grateful I was to the Mead family for their co-operation. One of the things the report identifies as important is earlier involvement and more listening to parents and families in such situations. I caution the hon. Lady against a blanket dismissal of the service offered by 111. There are many clinicians and call-handlers who work extremely hard and who deal with about a million calls a month, and the vast majority of those cases have satisfactory outcomes. But does that mean that there are not significant improvements that we need to make to that service? No, it does not. Of course there are things that need to be done better and we must learn the lessons from this terrible report.

[Rachael Maskell (York Central) (Lab/Co-op)]

My thoughts, too, are with the Mead family today. The diagnosis of conditions, including sepsis, must be carried out by those with the highest level of clinical skills. Triage by algorithms is unsafe. Can the 111 system be put back into the hands of highly trained clinicians, those trained to drill down in diagnosis, instead of non-qualified staff?

Care Homes: England

Rachael Maskell Excerpts

Wednesday 13th January 2016 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mrs Main. I thank my hon. Friend the Member for Hove (Peter Kyle) for securing today’s timely and important debate. As a country, we need to give deep thought to the importance we place on social care. We have heard in this debate that constrained finances are skewing the opportunity to do that. I have always said that we can judge a country by the way it treats its older people, and I wonder how we really think we are doing against that test. Those who have served our country in so many different ways deserve the very best care, and I am not sure that our system is built on that model. In fact, the model is now built more on minimal provision as opposed to optimal provision. I wrestle with that approach, and I believe that we really need to think about the direction in which we are going.

The current black hole in state funding for care has been made more challenging as the years have gone on by local authority cuts. We have heard clearly about the impact of a 10.7% budget cut over five years, and the fact that care providers have to pay more has added further challenge. I really welcome an uplift in the pay of care staff, because they are paid a ridiculously low amount of money. They are also faced with pension uplifts, and they have had to wrestle with the rise in national insurance and steep rises in the cost of energy, food and other services. That has all happened at the same time as they face the increasing demands of a challenging and changing demographic, including people with multiple needs, and tighter budgets. What we are seeing is unrealistic: the demand is greater, but the money is less.

[Joan Ryan]

Will my hon. Friend add to that list the fact that the CQC rates more than 50% of nursing homes as inadequate and needing improvement? The people living in those homes are therefore living in inadequate situations. How will that change, given the circumstances she outlines?

[Rachael Maskell]

My right hon. Friend makes a really pertinent point. There has to be a debate about safety and about providing good, secure homes for individuals. If people are living in substandard conditions, that is simply unacceptable. If there are not the resources to put that right, we obviously fear for the future.

Another thing we know is that the pressure being put on so many care organisations will make older people far more vulnerable. As we have heard, tens of thousands of beds could be lost. If people do not have security in later life, it can have a real impact on their wellbeing.

As others right across the Chamber have said in the debate, the autumn statement has left many question marks, and one of the issues we are going to see as a result is inequality. Some of the communities with the most demand for investment in social care will get the least money from the precept the Chancellor set out. Taken with the further cuts that local authorities will experience, that will have a cumulative negative impact on the provision of social care. That is happening at the same time as the NHS is really struggling with discharges, because the provision is not there in the community. In my constituency of York Central, some of the transitional beds will be lost because of a care home closure programme, which I will return to.

Cuts to support services for the elderly, such as day care placements, are happening because of the cuts to local authorities, and they are having a detrimental impact. The little things that local authorities could provide that kept people safe in their homes and connected in their communities are now very much part of history, as opposed to part of the solution. We keep hearing that finances are tight, but we must remember that it was not the people in our care homes who caused the financial crash—but, my, how they are paying for it.

A care provider in my constituency has highlighted the challenges of the new minimum wage rate and asked how on earth they are going to pay it. They already have staff who are engaged on zero-hours contracts. They tell me they cannot pay for staff to travel between visits. I obviously question that, and I support paying staff proper wages, but I really worry about how providers will deal with these issues in the future and how they will survive. I have written to the Government to raise those concerns.

The issues I have outlined are particularly challenging in a city such as York, which has a high cost of living and high housing costs. When those are combined with low wages, it is virtually impossible to recruit care staff, and that adds to the sector’s challenges. As a result, the care model we have does not really address people’s needs. That has had a real impact on discharges from the NHS and on being able to give individuals timely care in the community. We are now seeing the cumulative impact of these things, as the care home closure programme across York means that fewer beds are available.

The problem we have is that care is seen as a zero-hours, minimum wage, low-esteem industry, when it should be regarded as a high-skilled, professional service and the funding should match that. Those who have the means can afford to pay for what they get—only just, but they can. However, for the rest, care packages are being driven to the absolute minimum. It would therefore be appropriate for us all to agree that current provision is totally unacceptable. We need to draw a line under that and to have a real debate about what needs to be done. After all, who are we talking about? Who are we providing care for? It is our mums and dads. It is the most vulnerable in our society—those with multiple disabilities, those with learning challenges, those with mental health challenges and those whose bodies are not quite working as they once did. One day, it will be us.

Who do we expect to care for those individuals? It is highly trained professionals—the very best—who are rewarded appropriately, motivated and driven to learn more and deliver more. Like everybody else, I have met care workers right across the sector—in fact, I spent time doing care work myself—and I know the passion they have for providing the optimum care for individuals, but if they are not given the time to care, how can they deliver that service?

The Kingsmill review “Taking Care”, which Labour brought forward before the last general election, set out a clear programme for improving care standards and providing training and remuneration. It also dealt with the important issue of registration. It is really important that care workers are state-registered to ensure public safety. The steps the review set out show how we can secure high standards in care and safeguard service users.

We then need to think about how and where care needs to be provided. Of course people have different needs, including physical needs. In my own clinical practice as a state-registered physiotherapist, I would often get people’s confidence up and get them back on their feet, only for them to go home and lose the support and stimulation they had had, because support was not available continually in the community. Falls prevention work, which really puts in investment upstream and provides care, means that individuals avoid things such as a fractured neck of femur, which is so expensive to treat, putting more pressure on the health service. Little steps can make such a difference in the community and in care homes, keeping people well and addressing their physical needs.

Likewise, we know that so many people have mental health challenges in later life—two thirds of the occupants of care homes experience some form of mental health challenge. It is really important that the setting individuals are placed in appropriately addresses those needs. We need to start thinking big on these issues. The Dutch—I hope I say this right—Hogeweyk dementia care village is a fantastic scheme. It is about state provision. We need that kind of investment and that imaginative, big thinking around how we provide care in our country.

The issues I have mentioned are exacerbated by some of the most prevalent diseases in our country—loneliness and isolation, and the social and emotional health of the most vulnerable in our society. The tightening of budgets is having a major impact on the wellbeing of old people. Investment in the issue can mitigate the worst aspects. I am totally passionate about that. It is heart-breaking that older people are just given 15-minute appointments, often with a stranger, as opposed to a full support network and a real life. Our goal should be helping people to live, not preparing them to die.

On the challenges we face, we need to take a step back and think about what we want from care provision in future. These are political choices and are possible if somebody believes they can deliver them. I talk to carers who share the vision I have outlined and who want the very best for the people they serve. I also talk to people in residential care, who want hope in their future. Those people would give momentum to a Government who would dare to grasp the nettle to make sure that we provide appropriate care in future.

I want quickly to set out the situation we have in York. I have had many conversations with the residents of care homes, their families and the staff. We are going through a transition. That has already resulted in two care homes closing, and a further two—Oakhaven and Grove House—are set to close early this year. Residents and their families are distraught about the fragmentation that that is causing. Residents are being moved to placements across the city and away from their families. Some placements are on the other side of the city from where their families live, so family members can no longer just pop in to see mum as they do at the moment. Residents are being moved away from their friends in the care home—for some, these are the only friends they have in the world. Staff are also being moved away from their homes. Residents feel that they have not been listened to and that they have been ignored, which is unacceptable.

The council has put its plans ahead of the support that it purports to want to deliver. It is remodelling social care. I very much support the last Labour Administration’s vision for that. However, the sequencing of the changes is detrimental. It is about putting money before people’s needs. We need to hold back on the transition that is taking place, to make sure that there is investment upstream, as opposed to making people fit the system and sacrifice some of the only bonds that they have.

We have gone badly wrong in many areas of social care, and do not currently place the value on care users and staff that we should. As I have said, this is about political choices and political priorities. I ask the Minister whether there could be any greater priority than getting this right. I urge Parliament from today to take the debate forward. I want all those who have participated in today’s debate to make sure that we prioritise social care so that it is seen as an urgent need to be addressed by the Government in this term, so that we do not have to face challenges and struggles we face at the moment of questioning the finances and the value we put on social care. The question is whether the Government are willing.

Specialist Neuromuscular Care and Treatments

Rachael Maskell Excerpts

Tuesday 15th December 2015 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Brady. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on speaking with such passion once again about her constituent and neuromuscular disorders. Such disorders often do not receive the profile of other medical conditions, yet for each of the 70,000 people affected, they are all-encompassing. I want to talk about a range of services and the challenges within them. I recognise that the conditions affect adults as well as children. I declare my interest as a physiotherapist who has worked in this field in the NHS for 20 years and is registered with the Health and Care Professions Council. I want to examine three themes: specialist services and how they are delivered; transition; and a timely response at the time of need.

I will deal first with specialist services. A multidisciplinary team is essential for delivering services to people with neuromuscular disorders, but access can often be challenging. District hospitals have teams of staff who specialise in paediatrics, neurology or other fields, but those people might not have the specific skills that are needed when dealing with neuromuscular disorders. Practitioners are practised in the principles of such conditions, but might not be as familiar with particular syndromes, given that there are so many—60 or more, as we have heard. This situation is likely to be exacerbated in the community when general practitioners and community physios do not have the specific skills, so it is important to ensure that people with these conditions can access those with the right skills who understand the pathology of the disorder and the specialist treatment that is required.

For instance, there are two specialist centres in London and one in Oxford for the whole of the south-east, so people have to travel vast distances to consult a specialist team. Owing to the nature of their disability, that can be very challenging, and the centres can even prove to be inaccessible, especially as their disease advances. How do we bring specialist services to those with neuromuscular disorders? How do we train staff to provide optimum care in the community, and how do we provide a rapid self-referral service when that is needed?

If I take muscular dystrophy as an example, paediatric patients in York benefit from Leeds general infirmary’s outreach service. That provides an opportunity for families to meet specialist practitioners but, obviously, some have to travel to those services. Will the Minister ensure that funding for that outreach hub-and-spoke model of service provision will continue and that clinicians will be able to travel to deliver their services, either individually or as a team?

It is important that services are placed in appropriate locations. For example, if a patient will benefit from hydrotherapy, we need hydropools to be available. Anisa Kothia, a member of the York muscle group, has a son, Yusef, who has Duchenne muscular dystrophy, and hydrotherapy is a vital component of his treatment. It relaxes his muscles so that his limbs can be taken through their range of movements, and the buoyancy of the water helps his movement. Will the Minister support a national review between the Department of Health and the Department for Communities and Local Government into hydrotherapy provision and ensure that any deficits are addressed?

Ongoing services rely on clinicians with less of a specialism, however, so that requires professionals to be trained and the provision of regular updates, which is why Gita Ramdharry, associate professor at St George’s, University of London, and Kingston University, has been working with Muscular Dystrophy UK to develop new online physiotherapy training. Will the Minister set aside resources to ensure that we can have specialist online training to equip professionals to provide the optimum treatment? Obviously, more specialist care training is also needed which, for physio, can be very hands-on.

I have had discussions with senior clinicians in other fields about global medical education. I think that that is relevant for neuromuscular disorders, because such disorders often require a global view that enables recruitment from around the world to participate in webinars, to examine case studies and academic papers, and to demonstrate learning by making a submission. We need to take medical training to another level, so will the Minister look at that more deeply, particularly with regard to neuromuscular conditions?

Before I move on, I want to highlight that much of the care for long-term progressive conditions is provided by the family. Good self-management is key, as Labour’s expert patient initiative has proven. If the professional knows the patient and their condition, the treatment will be optimal and will provide the best support. For example, a chest infection often accompanies a neuromuscular disorder, and a chest physio who knows the patient will know how best to support sputum clearance with a combination of the best postural drainage, manual support, and expectoration or suction techniques. Knowing exactly what the patient needs is critical, and can be life-saving.

All physios have the competencies required to treat a patient, but knowing the individual can make the difference. Rapid access to services can be transformative, and self-referral is very important, so will the Minister ensure that all services provide rapid-access routes to the appropriate clinicians and that all patients can self-refer, rather than having to go through the normal access channels? In north and west Yorkshire, we have only one neuromuscular care adviser to cover more than 3,500 adults and children. Will the Minister recognise the need to provide additional professionals in that role, including in north Yorkshire?

I have previously talked about the need to review the transition between child and adolescent mental health services, and adult mental health services. We should do the same for neuromuscular disorders, because using someone’s age as a measure is arbitrary. The pathology of Duchenne muscular dystrophy is more likely to be understood in paediatric services than adult services, owing to the number of children who, sadly, still do not make it to adulthood. A person’s medical team and physios know that individual and know how to progress their treatment. It is entirely arbitrary and nonsensical that someone’s birthday should determine that they have to transfer to another team.

Continuity of service provision is important. The condition of those who do reach adulthood is often at an advanced stage, so they need continuity. The findings in the field are that young adults are often lost in the service and then re-emerge later with problems that were preventable. Will the Minister take a serious look at the interface between paediatric and adult services right across the Department of Health, and particularly with regard to neuromuscular disorders, because surely specialism should override age?

We should be making a timely response to need. A worsening situation has been observed across the spectrum of neuromuscular disorders. It has been seen by clinicians in practice, and now constituents are writing to me about it. Orthotics, wheelchairs and equipment must be in place when they are needed. Infants and children grow, and disease processes may degenerate, so the combination of the two means that expediency is important. Patients are waiting far too long for appropriate equipment, and that is essentially an issue of under-resourcing and poor prioritisation.

If someone is measured for a chair, they need that chair, but people are waiting month upon month before their chair arrives. While they are waiting, they will be positioned inappropriately and might not even have enough support for their frame. That can exacerbate pain, as well as compromise a patient’s musculoskeletal situation and, dangerously, their respiratory function. There is absolutely no excuse for that. When a chair arrives, a patient needs it, so we need to ensure that we get the right equipment in the right place at the right time.

Planning for what equipment will be required is part of the management process, because people must always be prepared for the next stage, and the outsourcing of services has made the situation far worse. With life-limiting conditions, there is no time to wait. Will the Minister agree to carry out an urgent review of the situation? Will he ensure that, starting on 1 April 2016, there will be a waiting-time marker for the renewal and provision of equipment so that the time between the initial request for an assessment and the patient receiving the equipment is measured?

For someone with a rare condition, their future depends on the whole NHS and care service working around them to provide optimum support. I have not touched on research and pharmaceuticals, nor on advances in science, but there are things that can be done immediately that can really change someone’s outcomes. We need the best provision and to give individuals hope to ensure that we can extend their life and improve their quality of life. I look forward to hearing the Minister’s response.

Mental Health

Rachael Maskell Excerpts

Wednesday 9th December 2015 Commons Chamber

[Rachael Maskell (York Central) (Lab/Co-op)]

I, too, want to talk about Bootham Park hospital, which closed suddenly, in just under four working days. We must remember the impact that that closure had on patients—the confusion, the fear and the anger, with some withdrawing and some wanting to die. We must also sing the praises of the professionalism of the staff in dealing with it. However, the closure was avoidable. There were too many people involved in decision making—commissioners; providers; Historic England; Prop Co, the owner of the buildings; and others. That is one of the failings in what happened at Bootham. With the change of provider, politics and blame ensued, and that must be investigated, because it had an impact. We must also look at the role of the CQC, which has acknowledged that its role in having to inspect the building before registering it with the new provider had an impact on patient safety.

It is therefore absolutely vital that we have an independent inquiry, as I, and 8,000 people in my constituency, have requested. I want the Minister to say that we can have that public inquiry, which is needed to ensure patient safety for the future. It might be an embarrassing situation, but we have to push on to make the service safe. Patients were scattered across our city for their out-patient appointments, and scattered across our region, travelling miles in a crisis. That is unacceptable.

It is not only essential that we have answers on what happened at Bootham Park hospital, but that we look back at the Health and Social Care Act 2012, which lies at the heart of the problem. Because of it, there is nobody with overarching responsibility for patient safety in the NHS. Different jurisdictions and different regulators have different responsibilities, and there are no mechanisms for responding to such situations. There is also the role of the Secretary of State in now having a duty to promote the NHS, and no longer to provide and secure it. That has an impact, because people can point a finger but do not have to lift a finger. We need to look at that, and also at the role of the CQC.

My second plea is that we have clarity about a replacement for Bootham Park hospital. When the Chancellor gave the autumn statement, he said that three new hospitals would come to fruition, but one for York was not mentioned. Was that because mental health is not getting parity of status, or because we are not getting a hospital? We need that clarity today. I trust that we will start to have some answers on those two points—the need for an independent inquiry and a new hospital.

Cystic Fibrosis

Rachael Maskell Excerpts

Tuesday 8th December 2015 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Sir Edward.

I thank my hon. Friend the Member for Dudley North (Ian Austin) for proposing today’s debate on cystic fibrosis and on the future of the drug therapy. I thank the cystic fibrosis team at York hospital. I have met with them and discussed at length their innovative service, which is at the cutting edge of provision for those with cystic fibrosis and takes on board the need for clinical excellence and the sterile conditions that we have heard about—they work the service around the patient, not the patients around the service. I also thank the people at the Cystic Fibrosis Trust for their time.

I emphasise the points made by the right hon. Member for Chesham and Amersham (Mrs Gillan). Her tireless campaigning was triggered by the inspiration of Archie Hill from her constituency and presses for the need to make progress on the right therapeutic responses for those with Duchenne muscular dystrophy. We would all like to see progress with Translarna.

I want to take a wider view of the therapeutic measures for those who experience cystic fibrosis. I am a physiotherapist by training and have worked for 20 years in the NHS with respiratory and neurological conditions, so I have a real understanding of the people who experience cystic fibrosis. There has been massive change in the management of that condition in my time in practice, in particular in physical therapy. Treatment is now more dynamic in support of individuals—physical treatment, rather than a more static treatment, especially when dealing with mucus clearance and building up lung capacity. That is all about the treatment and management of symptoms, however, similar to the drug regime that accompanies the physical therapy.

We have seen progress, therefore, but today we are debating a step change in our approach to cystic fibrosis. We are trying to provide hope to the 10,000 people who happen to have cystic fibrosis. Looking at a new generation of drugs might provide that hope. Orkambi is a drug that targets abnormal proteins, which will deal with the symptoms. When we look at drug therapy for cystic fibrosis, we should be looking not only at the immediate impact, which so many drugs do, but at the long-term effect. Every instance of a chest infection brings about damage to the lungs, as people have to expectorate continually, and that has long-term implications that can be fatal for some.

It is vital that we look at early intervention, which is what Orkambi is all about—about bringing a step change in the treatment process for those with cystic fibrosis. By targeting the proteins we have the opportunity to ensure that the cells in the lungs are healthy, which will produce longevity among patients. It is hoped that the new drug will bring improvement to about 50% of people with cystic fibrosis, which in itself will be a seismic change in the outcomes for them. It will have a profound impact.

I encourage the Government not to be nervous about cost, because costs for someone with cystic fibrosis are already high and cannot be underestimated. I will focus on existing costs, such as the cost of frequent visits to hospital, including the frequent use of intravenous drugs. A large proportion of people are on IV drugs for approximately one month a year, which is costly. People also have to be in sterile conditions, because the risk of further infection is incredibly high. Ongoing therapeutic intervention with drugs or physiotherapy has significant bearing on costs. There are also costs to do with managing a high-calorie but healthy diet.

Another expense is the drugs. Cystic fibrosis is not on the list of diseases for which people get free medication. Will the Minister look at that? When the list was drawn up, people with cystic fibrosis were not living into adulthood, so we should re-examine it. There are the costs of having lung transplants, if people require one, and any drugs that prevent future lung transplants have to be a positive, despite the risks, because people will be brought long-term hope.

There is the cost to an individual of education, which for many will have a disturbed pattern—in and out of school—and the impact on long-term employment opportunities. Even if in work, many people find it difficult to hold down a job, because the nature of the disease often takes them out of the workplace and they have to organise and balance their day with fitting in physio and the demands of drug therapy and diet.

Finally, there is the cost of care. Rarely is only one person involved in care for any of the diseases that we are talking about—a network of care is put around an individual with such a disease. Moving to a precision, early-intervention drug, therefore, is a way to bring in resource management, which can be positive not only for the individual, but for the NHS as a whole.

The result of what is being called for today would be positive economically and for people’s lives. In my short contribution, I want to ask the Minister to address the timeline for progress. There is obviously discussion in Europe, such as on the European regulations for Orkambi, and we want to see the timeline tightened up, so that people can have real hope in the new year that they will get access to the drug, because each time someone has a chest infection it has an impact on their long-term future. Time is not something that so many have, so my plea is for progress on securing access to the drug for those with cystic fibrosis.

--- Later in debate ---

[George Freeman]

My hon. Friend raises an important point. Over the past few decades, the NHS across the UK has played an inspiring role in leading a lot of the breakthroughs in new treatments, but we have become latterly a slower adopter of the very treatments we often helped to discover. That is partly because the pressure of an ageing society and the rising cost for the health system today of just treating existing conditions are extremely challenging. In some areas, that has made innovations appear a cost to the system, when in fact good innovations may come with a cost spike on day one but generally lead to downstream savings in years 2, 3 and 4.

My hon. Friend puts his finger on a profound challenge at the heart of this landscape: in order really to assess the impact of innovative treatments, we need a much better handle on the existing costs, many of which are hidden, that come with a diagnosis. For that reason, I am spearheading work in the Department of Health to drive through a system of per-patient costing, so that we can begin to get a much clearer handle on what a CF diagnosis means on day one for both the patient and the health economy. That will allow NICE and NHS England to develop much more intelligent systems for assessing whether an innovation really represents good value.

Genomics and informatics are changing the landscape; for that reason the Prime Minister has created my post and we have launched a series of initiatives. On genomics, we have launched a groundbreaking £300 million initiative to sequence the genomes from 100,000 NHS patients of cancer and rare diseases. We have also launched 11 genomic medicine centres across the NHS, so that genomics is fundamentally embedded in our health system. On informatics, we have released huge amounts of cohort data to drive research, and we just announced in the comprehensive spending review a major £3.5 billion programme to invest in NHS digital infrastructure to support that.

We have launched precision medicine and cell therapy catapult centres with the Medical Research Council and industry partners to lead in both understanding causal mechanisms of rare diseases and developing and accelerating new treatments. We continue to fund the excellent National Institute for Health Research, for which it is my privilege to be responsible, to the tune of £1 billion a year, and we committed this year in the CSR to fund it throughout this Parliament, at a cost of £5 billion. We have funded the £700 million Francis Crick Institute, and roughly £2 billion of the drugs budget is allocated to new medicines and new treatments in this Parliament.

There is a major commitment, in terms of science and funding, to trying to tackle this issue, but crucially we need policy reforms to ensure that breakthroughs in science can be harnessed for much quicker benefits for patients. That is what the accelerated access review and a number of other initiatives, such as the test bed programme and the vanguards I am running with NHS England, are about—trying to ensure we can change the pathways for getting innovation into our health system for much quicker patient benefit.

I want to say something about the accelerated access review and the specialist commissioning reforms that NHS England is putting in place. I know all Members here take an interest in this subject, so I hope they will be aware that I have launched the independent AAR to ask and answer one big question: what can we better do to harness the extraordinary infrastructure here in the UK in terms of our deep science research base, our NHS-NIHR research base and our NHS daily treatment platform?

The NHS is the fifth biggest organisation in the world, making millions of diagnoses and carrying out millions of treatments every day. Its original founding mission was to be a research organisation, but unless we better capture the data on those interventions, we are still practising, in many cases, blind medicine; we are not harnessing that intelligence enough to inform treatment.

I have asked that the AAR tackles three big questions. First, what can we do to allow the innovators—the developers of new drugs and innovations—quicker access to patients, to reach the all-important moment of proving an innovation works in patients? Secondly, what can we do to harness our leadership in genomics and informatics in order to create a more intelligent system for NICE and NHS England, with more flexibilities, so that they can assess, adopt, approve and reimburse innovations using real-time data about real patients? That will allow us to develop a more flexible set of pathways and adaptive tools with which to embrace this revolution.

When a drug comes to us with a genomic biomarker and we know that it will work for a certain sub-cohort of patients, that profoundly changes the risk dynamic of a traditional pharmaceutical clinical trials programme and should allow us to accelerate adoption for particular patient groups.

[Rachael Maskell]

Within those considerations, will the Minister also look at international evidence, so that we are looking at not only our own clinical trials but those on a global scale? Clearly, developments are global rather than just national.

[George Freeman]

The hon. Lady makes an important point. I have been to Washington three times and to Berlin, Paris and Brussels to highlight that while the UK is leading in this field, we need a transatlantic—European and American—agreement on how we move things forward. That is why I am convening and chairing a summit this afternoon with the Washington-based FasterCures campaign, which is a cross-party group on the Hill pushing for innovations in this space. I have been talking to the Commission about the European framework. I want the UK to be the best entry point into the European market, but I also want the European regulatory framework to be consistent and coherent; that is an important point.

The second question I have asked the AAR to look at is: what freedoms, flexibilities and new pathways can we envisage giving NICE and NHS England, particularly in the field of specialist commissioning? For CF, the decision to purchase ivacaftor is a national one, made by an NHS England specialist commissioning unit. I would like that unit to work much more closely with the Department of Health pricing team, so that where we can offer a company faster access to a key patient cohort, data and genomic information, we are able to do a much better deal with the company.

At the moment, we are operating the Translarna and Vimizim programme in the existing landscape. I share colleagues’ frustration, but it is important we go through due process. I do not think anyone wants a world in which Ministers decide what drugs come through on the basis of political pressure, tempting though it may be. I have done everything I can this year to expedite the existing process.

Following the positive news on Vimizim, I am hopeful about Translarna—a similar drug. NICE has been consulting on the process, and I believe the company has been engaging with NICE on pricing. I am hopeful that there will be a decision in the next few months to parallel the one on Vimizim, but that decision is not in my gift: it is up to NICE, which is rightly working on the basis of the very best clinical evidence.