Rare Diseases Strategy

Greg Mulholland Excerpts

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett]

I am really pleased that the hon. Lady raised that point, and I again pay tribute to the work done by Muscular Dystrophy UK to support patients. A key recommendation from our inquiry addressed the fact that part of the rare diseases strategy suggests that we should look at things on a much more integrated level. Patients are not just the medical condition that is attributed to them; they are also an entire person, who is part of a collective family. The rare diseases strategy has implications not just for those individuals, but for their families, carers and so on, across the board. We have seen a number of instances where the rare diseases strategy is simply not doing what it should have been doing, so I hope that in the Minister’s summation he will address taking a holistic approach, rather than just looking at the individual.

Further recommendations in the APPG report include that NHS England should be more proactive in implementing the commitments it can influence and dedicate more resources to improving the co-ordination of care, as the hon. Member for Newcastle upon Tyne Central (Chi Onwurah) said. It recommended that the Department of Health should improve its processes to both engage and communicate with stakeholders in the strategy. It also recommended that the Department of Health and the UK National Screening Committee should work together to establish robust programmes for identifying and preventing rare diseases, and that training for frontline medical staff on rare diseases and their impact on patients should become widely available and incentivised. The APPG is very much encouraged by the number of programmes that have been developed in response to the strategy that complement its aims, such as the 100,000 Genomes Project. Those programmes are amazing in themselves; none the less, those developments should not necessarily be considered as actions resulting from the UK strategy for rare diseases.

The time to act is now. I am sure that the Minister can guess my final point, which is about the changes to the National Institute for Health and Care Excellence’s highly specialised technologies programme. Commitment 13 of the strategy—lucky for some—is to ensure

“that there are appropriate procedures for evaluating the costs and benefits of treatments for patients.”

NICE’s recent decision to implement an upper funding threshold for its HST programme, made despite widespread condemnation from the rare diseases community, conflicts with that aim. The upper limit will vary according to the lifelong impact of the technology on the patient, varying from £100,000 per quality-adjusted life year for treatments that deliver less than 10 QALYs to the patient in their lifetime, up to a maximum of £300,000 for treatments that deliver more than 30 additional QALYs to the patient in their lifetime.

Unfortunately, the programme has been beset by delays. Only four medicines for the treatment of rare diseases have been evaluated since the HST programme began, averaging just one a year, despite a capacity for three treatments a year. The four medicines evaluated to date have been shown to bring tremendous value to the patients eligible to receive them. They are life-saving, life-lengthening treatments with the potential to lift the burden on whole families of a rare genetic condition.

[Greg Mulholland (Leeds North West) (LD)]

I thank the hon. Gentleman for securing this debate and for his leadership on the issue. On that particular point, does he agree that, as well as being a kick in the teeth for the rare and ultra-rare disease community—families, medical staff and charities—the plans make no sense? They have no bearing on the effectiveness of the drugs, which surely should be the basis for decisions, and they threaten new drugs that could change and save people’s lives, as well as some of the drugs that we joined families, medical staff and campaigners to get in the first place.

[Ben Howlett]

I thank the hon. Gentleman for his intervention and pay tribute to him for his work on rare diseases over the years. One of the first events I ever went to in Parliament was on rare diseases and was hosted by him. I could not have put it better myself. I will come later to my view that the issue needs to be thought about in a more timely way, potentially in a consultation and through some sort of implementation plan, which has been missing. It will impact not just people with muscular dystrophy, for example, but all those with the different conditions that he has championed in the past.

The four medicines evaluated to date have shown tremendous benefits to patients, and are life-saving and life-extending treatments. They are some of the most powerful and effective treatments for rare diseases ever seen, and the highly specialised technology evaluation committee recommended them for funding in England, but none of those life-changing medicines would have been able to raise the lower threshold significantly, and none would have been approved under the new regime.

If implemented, the plans will significantly affect patients with rare diseases and their ability to access life-changing treatment, at a time when we should be expanding access routes rather than limiting them further. The changes contradict the positive recommendations made in the accelerated access review and will restrict any attempt through the industrial strategy to position the UK as a centre for the development of innovative medicine. England already has extremely slow and limited access to treatments for rare genetic conditions; further narrowing of access routes will shut the door to innovation for our community of patients and families. It is unacceptable to implement such drastically damaging proposals just 18 days after they were announced. I therefore join the sector in calling for a pause in implementing the proposals and for a consultation and impact assessment.

Oral Answers to Questions

Greg Mulholland Excerpts

Tuesday 21st March 2017 Commons Chamber

[Mr Dunne]

The hon. Gentleman is right to point out that we have some world-leading patient outcomes for congenital heart disease, and I recognise the statistics that he read out. This is being driven entirely by seeking to improve patient outcomes across the country—improving them even on that very good performance—and to ensure greater resilience of service in some areas where there are relatively low volumes and an over-reliance on locums. I accept that that is not the case at the Royal Brompton, but it is in some of the others.

[Greg Mulholland (Leeds North West) (LD)]

The Leeds heart unit is performing very well, and is free from the threat that it was facing, unfairly, a few years ago. Will lessons be learned, however, from the disastrous Safe and Sustainable review process, which pitted hospital against hospital and clinician against clinician? Can we find a much better way—I hope the Minister will tell us that this is happening now—to reconfigure such services?

[Mr Dunne]

I recognise that when the proposal was put forward back in 2012, it led to a process that we felt was wrong, and we therefore stopped it. This process, we hope, is being conducted in a more rigorous and fairer way, and will lead to outcomes driven, as I say, by improving patient experience.

Oral Answers to Questions

Greg Mulholland Excerpts

Tuesday 7th February 2017 Commons Chamber

[Nicola Blackwood]

The National Institute for Health and Care Excellence and NHS England are working together to better manage access to new drugs and medical technologies for rare diseases. We are also working on the UK strategy for rare diseases and its implementation. It has 51 commitments to be implemented by 2020 to improve the lives of constituents such as my hon. Friend’s.

[Greg Mulholland (Leeds North West) (LD)]

A simple but life-saving use of medical apparatus is tube feeding. Will the Minister join me in welcoming the fact that this is Feeding Tube Awareness Week, which is raising awareness of this important issue and giving support to all the thousands of families in which children or other family members are tube fed?

[Nicola Blackwood]

I thank the hon. Gentleman for drawing our attention to this issue. Sometimes the simplest solutions are the most effective. We want to make sure that such innovations are driven across the NHS more effectively, which is exactly what our academic health service networks are there for.

Community Pharmacies

Greg Mulholland Excerpts

Wednesday 2nd November 2016 Commons Chamber

[Alistair Burt (North East Bedfordshire) (Con)]

It is a pleasure to follow the right hon. Member for Rother Valley (Kevin Barron), who runs the all-party parliamentary group extremely well. I agree with much of what he says about the value of community pharmacy.

I start my brief remarks by thanking the people I was involved with in pharmacy for their immense courtesy at all times, even though we were talking about some very difficult things. Those people included my local pharmacists, Arif and Raj in Wootton; Graham Phillips of Harpenden, who spent a large amount of time showing me his shops and is still very engaged with me; those on Bedford local pharmaceutical committee, who invited me at a most difficult time to launch their healthy living pharmacies in the area; and of course my team in the Department of Health.

Instead of repeating the Minister’s statement and his commitment to pharmacy, I shall say a little about why we are where we are and what I found when I was dealing with pharmacy, and look ahead to the future. This is the sort of debate where the previous Minister finds that, owing to pressing parliamentary business, he is not able to attend and he is somewhere else because all this is now nothing to do with him, guv. I thought that would be most unfair and I wanted to be here to support my hon. Friend and to give a little background.

The process started with the settlement made in 2015 between the Department of Health and the Treasury. In that settlement, extra money was released for the NHS, particularly in my portfolio—adult social care, mental health and primary care—but as was mentioned by the hon. Member for Leicester South (Jonathan Ashworth) in speaking for the Opposition, efficiency cuts were required throughout the NHS, as advocated by Simon Stevens. Part of that involved £170 million off the £2.8 billion for pharmacy. I thought that this was appropriate and that, once it was announced, we could work through it.

I regret the 3,000 figure that I gave to the right hon. Member for Rother Valley at a meeting with the APPG. It was a worst-case estimate, taking no account of what changes pharmacies might make to accommodate any reductions in finance, and therefore it was absolutely top-end. The reason that I gave it in conversation with colleagues—it was open and public and I have no objection to the figure being used—was to indicate that I was aware of the difficulty and that we wanted to work very hard to mitigate it, which we then started to do. But the 3,000 figure took on a life of its own. With hindsight, it might have been wiser if I had stuck to exactly what the Minister says, which is that we do not know because the Government do not have a plan to close pharmacies. They are not in a position to do that and we do not know what will happen.

I do not believe for an instant that the outcome will be as dramatic as Opposition Members have suggested, because businesses do adapt. One of the things that I found when I arrived, as several Members have said, is that 18% growth had taken place in 10 years. Pharmacies are a business and pharmacists will make adaptations to their business to cope, so we will have to wait and see what happens. I would not use the 3,000 figure again.

[Greg Mulholland (Leeds North West) (LD)]

As Health Minister, the right hon. Gentleman said that 3,000 of the 12,000 pharmacies could close. That has come from pharmacies, not from politicians, so does he not accept that that is the real situation, as he said himself?

[Alistair Burt]

No. I said it, so I know why I said it. I said it because it was an estimate, and it took no account of any business change that people might make. It was a top-end estimate and I said it to indicate that I was aware that there might be closures and that we accordingly wanted to mitigate the effects. With hindsight, I would not have given that figure, because everyone has said that the Minister said that so many pharmacies would close. No, I did not. That figure does not represent the pharmacies that will close. They might have done if we had not had mitigating measures and if businesses had not made changes themselves. I wanted to put that on the record.

Let me say what I found when I took on the role. There was a discussion in pharmacy about its future. There were plenty of voices in pharmacy which said that the funding model that values volume and establishment but not necessarily quality of service was not the right way for pharmacy to go. The pharmacy profession wanted to see some changes. I thought that was relevant. There were differing voices in pharmacy. The Pharmaceutical Services Negotiating Committee represents some, but there are other voices.

The integration fund we suggested as a way to look at how pharmacy was changing to come into GPs’ surgeries was warmly welcomed. There were innovations all over the country in pharmacy in general. There was a growing move towards healthy living pharmacies providing more services. All this was going on at the same time as we were talking about what changes we needed to make to provide the extra funds for the NHS.

So where are we going to go in the future? I think that we will get through this process. I remember saying to stakeholders in December 2015, “The future of pharmacy will not be decided by this letter. The future of pharmacy in 2020, 2025 and 2030 is still to be decided. It won’t all rest on this; it will rest on changes and progress to be made.”

First, the PSNC consultation process needs to be changed; I am not sure whether it works well when other voices are excluded, and that should be looked at. Secondly, the differing voices in pharmacy should find a way to get together and present a view beyond what is happening on the high street to show where pharmacy is going.

Thirdly, the integration of the NHS could be done better. Why are there not pharmacists on every single clinical commissioning group? There should be more commissioning of services; the hon. Member for Central Ayrshire (Dr Whitford) was absolutely right that we need to do more, but the NHS needs to do more, with better commissioning and pharmacists being involved.

Fourthly, there needs to be a thorough review of what pharmacy can do and provide in the future, and that should be a springboard. Sometimes innovation comes out of pressure, not out of great resources, which we would love to see in a perfect world. Finally, we should ensure there is long-term support for a locally based network—there are models that would remove more from the locally based network that we should all resist—and such an approach would be the start of a good future for pharmacy.

--- Later in debate ---

[Norman Lamb]

I thank my hon. Friend for making that point; it was the second one that I was going to make. As the hon. Member for Central Ayrshire (Dr Whitford) made clear earlier, the impact will be arbitrary, and disadvantaged communities and rural areas will feel it most. Only four of the 15 pharmacists in my community will benefit from the pharmacy access scheme; all the others will not, yet they are needed by their local community.

[Greg Mulholland]

There were some outrageous comments earlier suggesting that some of those smaller pharmacies are simply there for dispensing, when they have trained pharmacists helping people. As well as the important village and rural pharmacies—I have village pharmacies in Pool and Bramhope that do excellent work—communities in suburbs rely on smaller pharmacies; those communities will lose that service.

[Norman Lamb]

Absolutely. It is the arbitrary impact of the cut that concerns me so much.

The other aspect of that arbitrariness is—again, a point made by the hon. Member for Central Ayrshire—that the big boys will be fine. They will survive. Surely, the Government should be addressing the excess profits of those organisations, rather than putting in danger—as their own impact assessment says—the small independent pharmacies and small chains. It is completely irrational and makes no sense.

The final issue I want to raise is that, instead of going about cutting preventive care, protecting the big boys and putting small pharmacies at risk, the Government ought to be undertaking a major programme to increase what pharmacies do. We heard earlier about what is happening in Scotland; that is the approach that should be taken. There should be more work on smoking cessation, on sexual health, on substance misuse and on screening and immunisation, and more should be done to promote independent living, encourage healthy lifestyles and support people in their self-care.

The Government’s approach makes no sense. The bottom line is that, as the Government scrape around trying to find enough resources to prop up the NHS, which, as we know, is expecting to receive a reducing percentage of our national income between now and 2020, they are making stupid decisions such as cutting spending on health education, on public health and on community pharmacies. The Government are in a complete mess. We need extra resources for the NHS and a new long-term settlement. The sooner the Government recognise that, the better.

Oral Answers to Questions

Greg Mulholland Excerpts

Tuesday 11th October 2016 Commons Chamber

[Nicola Blackwood]

As I have said, these guidelines are simply intended to be advisory. They are intended to give the best possible information and advice and to put all the evidence in one place so that people can make the best possible decisions with their drinking.

[Greg Mulholland (Leeds North West) (LD)]

Campaigners on alcohol abuse have acknowledged the importance of the pub, which is a controlled sociable environment in which to enjoy a drink compared with the unrestricted supermarkets. Will the Minister have a word with her colleagues in the Department for Communities and Local Government who continue to preside over a system in which profitable wanted pubs are demolished and in which supermarkets are built on the site against the wishes of local communities?

[Nicola Blackwood]

The hon. Gentleman plays a very important role as chair of the all-party save the pub group and has been a dogged campaigner for the pub. We are very clear that social drinking is not the target of these low-risk guidelines. I am happy to meet and discuss this issue with my DCLG colleagues.

NHS Commissioning (Pre-Exposure Prophylaxis)

Greg Mulholland Excerpts

Tuesday 7th June 2016 Commons Chamber

[Jane Ellison]

There is no policy change and I have laid out the position. It is important to understand that even in the modelling work that has been done, PrEP is not a silver bullet. It has an important part to play, but it is not a silver bullet in terms of HIV prevention and it does not affect some of the broader issues that I mentioned in my response, for example in respect of STIs.

[Greg Mulholland (Leeds North West) (LD)]

This is another example of the over-cluttered, over-bureaucratic and confused system for approving drugs in this country. May I draw the Minister’s attention to the fact that NHS England promised £2 million to allow 500 people to be treated in this way? Does she understand people’s dismay that it is now passing the buck and saying that it is down to local authorities, which we all know are incredibly cash-strapped?

[Jane Ellison]

The NHS is seeking clarity through the courts on its own position. No decision has been made about who will be the final commissioner for PrEP, so what the hon. Gentleman said is not quite right. The £2 million that has been committed to the pilot is important and will inform our understanding of this important intervention.

Southern Health NHS Foundation Trust

Greg Mulholland Excerpts

Tuesday 3rd May 2016 Commons Chamber

[Alistair Burt]

Today, I met departmental officials and spoke to the regional director responsible for NHS improvement and, as I mentioned earlier, the deputy chief inspector of the CQC who is responsible for this report. I can assure my hon. Friend that, in so far as it is up to me or the Department, that change will be adequately delivered with a sense of urgency, because, as she rightly says, patients and families have, in some cases, waited much too long for this. If warm words are to mean anything, we must show that delivery follows.

[Greg Mulholland (Leeds North West) (LD)]

The failure of care for people with mental health issues, learning disabilities and autism has been shocking and the board should go. Equally shocking is the fact that, 11 months before Connor Sparrowhawk’s tragic and unnecessary death, failures had been identified but not acted on. What can the Minister do to ensure that, as part of a robust inspection regime, when failures are identified they are acted on and done so very quickly to prevent such failures again?

[Alistair Burt]

Over the past 12 months I have met a number of families who have been victims in similar circumstances—some had children who had been placed badly in an inappropriate place, and, in one or two cases, death had been the result. My colleagues and I are determined to do whatever we can to break down those situations where people feel that they have to fight for everything, and where they find doors closed against them when they want to challenge something. All too often in mental health, when people are challenged, they respond defensively. The whole transforming care process stems from Winterbourne View and the determination of the NHS and the board that monitors and oversees that process, including those who have mental health issues themselves and their advocates. The concerns that have been expressed in the past will not go completely, but I am sure the system is better placed now to deal with them and to listen to people more seriously than was the case, tragically, in the past.

Junior Doctors Contracts

Greg Mulholland Excerpts

Monday 18th April 2016 Commons Chamber

[Mr Hunt]

That is a very important point to make. On the BMA’s mandate for the current strike action, many hon. Members have said today that we should get round the negotiating table. They may not be aware that the BMA decided to ballot for strike action before even sitting down to talk to the Government about our plans. It decided to go straight to a ballot for industrial action on a false prospectus of the Government’s planned changes. That sowed many of the misunderstandings in the current dispute.

[Greg Mulholland (Leeds North West) (LD)]

Like most hon. Members, I have had many doctors coming to my constituency surgery—not junior doctors, but registrars, on whom our hospitals rely. They have sometimes been in tears. They have asked me if the Secretary of State will define exactly what he means by a seven-day NHS, because clearly there is seven-day care. Is it just an ideological mantra?

Oral Answers to Questions

Greg Mulholland Excerpts

Tuesday 22nd March 2016 Commons Chamber

[Jane Ellison]

There are a number of invitations there, some of which I will resist. My hon. Friend is absolutely right to highlight the importance of this announcement. Obviously, it is the first step towards the Government’s comprehensive childhood obesity strategy, which we will be launching in the summer. The Chancellor of the Exchequer was absolutely right to go ahead with this and to move forward. The burden of childhood obesity, as she knows all too well, falls very, very heavily on poorer communities, and my right hon. Friend was absolutely right to champion that measure, because it will make the most difference in the poorest areas.

[Greg Mulholland (Leeds North West) (LD)]

Families with boys with Duchenne muscular dystrophy are anxiously awaiting the NICE guidance to be published next week. Can I get an assurance from the Minister that, with this drug already being licensed and available in 18 countries, if NICE approves it, NHS England will bring the funding forward very quickly?

[George Freeman]

The hon. Gentleman is a doughty campaigner. Although he tempts me to pre-empt the decisions of NICE, I cannot, and it would not be appropriate for me to do so. I am afraid that we will just have to wait for its decisions, which are rightly taken on the best clinical evidence.

Oral Answers to Questions

Greg Mulholland Excerpts

Tuesday 9th February 2016 Commons Chamber

[Alistair Burt]

I thank my hon. Friend for her question, and the Royal College of Psychiatrists for its work on Lord Nigel Crisp’s commission, which we have supported. The report and recommendations have only just come to us, but they certainly travel in the direction in which the Government are already going. We want to reduce out-of-area placements. The NHS is already committed to that, and is working on moving to a definitive target to reduce the number of them and, I hope, eventually to scrap them. I was up in Hull last week to look at problems in that particular area. The recommendations on waiting times are very important. As we all know, this area has been undervalued in the past. It is under greater scrutiny, and more investment and support are going in through the Government. Today’s report will help us in relation to that.

[Greg Mulholland (Leeds North West) (LD)]

rose—

[Mr Speaker]

I will call the hon. Gentleman if his question consists of one sentence.

[Greg Mulholland]

Leeds has a shortage of integrated care beds and pressure on acute services. Will the Secretary of State—[Interruption.] That was a comma, Mr Speaker. Will the Secretary of State please intervene, so that Leeds Teaching Hospitals NHS Trust can open wards at Wharfedale hospital, which it wants to do, while the clinical commissioning group provides the money?

[Mr Jeremy Hunt]

I am very happy to look at that.