Spinal Muscular Atrophy

Debate between John Hayes and Rachael Maskell

Thursday 25th July 2019 Commons Chamber

[Sir John Hayes]

Exactly. That is why, in the exciting conclusion to this speech, I shall make demanding suggestions. I think they are demanding because of the demands of those who need this drug, not because of any particular interest I might have in this matter beyond a passion to ensure that my constituent and others like her get what they need so desperately.

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

I am grateful to the right hon. Gentleman for introducing today’s debate. We have had many debates in the House on the procurement of drugs. I have been working with health economists at the University of York who are leading in this field. They very much recommend the model now being adopted by Canada around a national rebate scheme, which takes away some of the tension over cost that we seem to return to time and again. Is not that a way forward that the Government should at least explore?

[Sir John Hayes]

The hon. Lady had the great pleasure of shadowing me when I was at the Department for Transport, and I have had the greater pleasure of listening to her on so many subjects. She speaks with such knowledge, understanding and wisdom. Once again, she has shown all those things today.

The Government and the new Prime Minister must do as much as they can to ensure that those with rare diseases have every chance possible to live the very best lives they can. So, here is exactly what to do: first, as Spinraza has been shown to be both safe and effective, the NHS should provide the treatment for all those who would benefit from it; secondly, in addition to making Spinraza available for all, the Minister should set up a rare drugs fund, similar to the successful cancer fund, to ensure that those battling debilitating degenerative diseases are supported at every stage of their journey; and thirdly, I ask the Minister to implement an immediate review of the criteria used by NICE to determine access to new medicines.

We all want to do the right thing. I described earlier what I said was a crude approach. These things develop; they metamorphose. This is a chance to look again at how we can administer treatment to have the best effect on those in the greatest need. Hegel said:

“Life has a value only when it has something valuable as its object.”

Chamberlain said:

“In great deeds something abides.”

There is no better great deed, no more noble object, no more abiding purpose than the care for those in the greatest need. I ask this Minister to make her abiding object a war on want, a campaign against suffering, a crusade for those in pain—Madam Deputy Speaker, nothing less will do.

Haulage Permits and Trailer Registration Bill [Lords]

Debate between John Hayes and Rachael Maskell

Tuesday 26th June 2018 Commons Chamber

[Rachael Maskell]

All Members are entitled to attend Committees, even if they are not Committee members, but I do not need to tell the right hon. Gentleman about those facts.

It will be catastrophic if we get the licence-distribution process wrong, but the Government have yet even to say that their prime objective will be to remain in the EU community licence arrangements.

New clauses 1 to 3 also call on the Government to report to Parliament on the range of impacts that leaving the EU community licence scheme will create. Again, we have sought to do this previously, but to no avail, as the Government are not interested in the facts. They have their fingers crossed and the belief that all will be well as they drive us over the cliff. The Opposition value evidence-based decision making, and my biggest shock about this place is how low a priority analysis still is. Let me give an example: the Minister could not tell me in Committee how many permits will be needed. The high possibility of the need to evoke Operation Stack were we to end up outside the EU community licence arrangements is evident, yet due to the Government’s lack of care and attention, the proposed lorry park did not go ahead because of an error in the planning process.

I could give a lot more examples about the reality of borders, not least in Northern Ireland, and how the scheme will operate, but the Minister was unable to address such issues in Committee. Clearly, borders will be created between the EU and the UK. The Minister denied that that will be the case between the north and south of Ireland, despite their being different jurisdictions, but even should special arrangements be made to address that issue, there would most certainly be borders between the east and the rest of Great Britain in the west. Both scenarios are completely unacceptable, but the reality of being outside a central customs arrangement will create such a border. Understanding the environment means not only understanding the risks, but having high-quality data to back this up. That is why Labour supports new clauses 1 to 3.

This brings me to my amendments 4 and 5 which, along with amendment 2, relate to permit provision. Clause 2 is very concerning. As with all Bills, it calls for regulations to be made, but is rudderless with regard to why and how. Amendment 4 seeks to amend clause 2(1)(c), which states that the regulations will determine how the Secretary of State will decide who receives a permit, including the criteria for doing so. If there is a method of selection, and it is vague, one could argue that that is all well and good, as that is what regulations are there for. However, we believe that, in paragraph (c), it is more damaging to keep the two examples that are in brackets than to say nothing at all.

I am asking for this Bill to be tidied up this afternoon. It speaks of the utterly chaotic way that the Government are approaching international transactions over trade, and the way that they are handling vital business needs at home. First, paragraph (c) talks about a “first come, first served” basis. That means that a business has to be at the front of the queue each time it needs a permit. There is no identification of strategic industries, no understanding of business need or the need to be able to plan, and no concern over how new entrants further down the line will even get hold of a permit. That is a poor example. Moreover, to include such an example in a Bill as important as this one speaks of serious Government incompetence over logistical planning. May I gently advise the Government once again that it would be in their interests to leave out that example? It does not add any substantial detail, but sets a tone to desensitise business as to how logistics will be approached.

Let me come now to my second suggestion. Paragraph (c) mentions

“an element of random selection.”

I do not think that I need to say much more other than that those words have to go. A “random” approach to economic and logistical planning is the exact reason why businesses are seeking stability elsewhere. We on the Labour Benches get that. I suggest that the section is simply removed to give Government time to consider how they will approach the issuing of permits, before bringing forward secondary legislation. Why make things worse for themselves if they really do not have to? I am sure that the Government will see the common sense in what I suggest, and I trust that they will accept my amendment today.

Amendment 5 seeks to amend clause 9(1). If we are going to introduce a new permit scheme, we must properly review the process. Our amendment seeks to ensure that there is a greater understanding of how the permit system works. In wanting to know the number of permits requested, this simply highlights the scheme demand—something that is important for the Government to understand. Following on from that, the amendment will then require data to be provided on the number of permits granted and refused. In particular, it is important to understand how many were refused and why. For instance, was it owing to an error in the way that the application process was made or was working, or to there not being enough permits available to haulage companies in the first place? If either of those scenarios were the case, the Government would have firm data on which to evidence the change needed in the system. Labour also supports amendment 2, which protects the haulage trade—

[Mr John Hayes]

The hon. Lady is making a very compelling case for both her amendments. In the case of amendment 5 with the issue about review, I am not sure whether it would be wise to make that part of the legislation. It is perfectly possible for the Government to commit to a review in respect of the legislation. On her first very strong point about the criteria, the Bill as it currently stands uses the words “may include” and then it lists the two things that she describes. It is an inclusive, rather than exclusive, provision. I wonder whether that might be a way through this in a more collaborative vein.

[Rachael Maskell]

As ever, I thank the right hon. Gentleman for his points. Regarding my amendment 4, clearly having the words on random selection in the Bill is really unhelpful to the Government because it sets the tone on trade. At this time, we must all acknowledge that business needs a confidence-building approach. It is unhelpful to know that a chaotic approach to the provision of permits is even being considered as a possibility. I trust that the Minister has heard that call. I am trying to assist in the passage of the Bill and what happens afterwards.

Oral Answers to Questions

Debate between John Hayes and Rachael Maskell

Thursday 13th July 2017 Commons Chamber

[Mr Speaker]

We are very grateful to the right hon. Gentleman, I am sure.

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

The east coast main line between London and the north is in urgent need of infrastructure investment to end the disruption caused by failures of the antique overhead power lines. How much does the Minister expect Virgin Trains East Coast to contribute to that?

[Mr Hayes]

The east coast main line is the line I use regularly, and I am extremely familiar with the quality of that service. The hon. Lady will know that the new express trains we will be using on that main line by the end of 2018 will offer greater capacity, reduced journey times and more reliable services.

[Rachael Maskell]

So not only does the Minister not answer my question but he does not know the amount the operator has to contribute, yet he is about to dig into the back pockets of taxpayers to bail out the Stagecoach-Virgin consortium when, just two years ago, the Government took East Coast out of public ownership after returning £1 billion—£1 billion!—to the Treasury. How much will the Virgin Trains East Coast contract retrofit cost the taxpayer? Does he not draw the same conclusion as the Labour party that, as we pay for private and make savings from public rail, only a publicly owned rail franchise can operate in the public interest?

[Mr Hayes]

My goodness, Mr Speaker. This is like a journey to a past that never happened. I remember one of British Rail’s last, and perhaps most poignant, slogans: “We’re getting there”. Well, getting there is a pretty fundamental requirement of any journey. Could there be a less ambitious objective than merely getting there? That is what nationalised railways were like—we all remember them. They were a disaster. The cost of renationalising the railways in the way the hon. Lady recommends would be at least £19 billion, which is £19 billion that the hon. Member for Bolsover (Mr Skinner) and others want to spend on all these other schemes.