Spinal Muscular Atrophy
Debate between Mary Glindon and John Hayes(5 years, 4 months ago)
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Sir John Hayes
Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or, even worse, declining capabilities. Indeed, that has happened to my constituent too.
The hon. Lady will know that, following strong advocacy by families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians, NICE and NHS England made amendments to the managed access agreement. While amendments are far from unwelcome, the disappointing truth is that the new criteria will still exclude some SMA patients desperate for treatment in the way she and others have articulated.
The intensely difficult battle fought by SMA patients has highlighted deeper flaws in the system. Families report feeling that they have been pitted one against another as advocacy groups are forced to decide whether to push for wider accessibility, and as a consequence risk delaying treatment for those eligible, or, alternatively, to take what is on offer and exclude a minority of the SMA family.
Life can be intensely difficult. All our bodies are complicated and vulnerable, intricate and fragile. We are regularly reminded, are we not, that they can go wrong in a multitude of hard-to-understand ways. I have argued many times in this House that a society should be gauged by how it cares for, protects and promotes the interests of its most vulnerable members.
Mary Glindon (North Tyneside) (Lab)
I congratulate the right hon. Gentleman on securing this important debate. I, too, have a young constituent, Sam McKie, who has SMA type 2. I hope the right hon. Gentleman agrees that the issue is that, whatever has happened so far, we need to know that NICE will look at the fact that the drug can halt further deterioration. As he says, we are all weak mortals, but if that deterioration is halted, people can have some quality of life, whatever type of SMA they have.
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.
Oral Answers to Questions
Debate between Mary Glindon and John Hayes(7 years, 4 months ago)
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Mr Hayes
Was it not Hegel, Mr Speaker, who said that nothing worthwhile is ever achieved without passion? My hon. Friend is certainly a passionate advocate for this scheme, which is important to her constituents. It is also important to the port, which she champions as well. We will look at these matters closely because port connectivity is vital if we are to make our maritime future as glorious as our maritime past.
Mary Glindon (North Tyneside) (Lab)
T4. Will the Minster say whether the new rolling stock for Merseytravel, HS2 and Crossrail will be procured using private or public finance, and why that is the case?
Oral Answers to Questions
Debate between Mary Glindon and John Hayes(10 years ago)
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Mrs Mary Glindon (North Tyneside) (Lab)
The Minister of State, Department for Transport (Mr John Hayes)
The Government recognised the detrimental effect that the proposed port services regulation in its original form would have had on the UK ports industry. At the Transport Council in October, we succeeded in our main negotiating aim of ensuring that the Council text was amended to protect our ports industry by limiting its application and by taking better account of the interests of already competitive ports such as ours.
Mrs Glindon
What work has the Minister carried out with European partners through the process to ensure that trade union recognition and collective bargaining are explicitly protected, while still respecting the autonomy of social partners?
Oral Answers to Questions
Debate between Mary Glindon and John Hayes(11 years, 11 months ago)
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Nic Dakin (Scunthorpe) (Lab)
18. What discussions he has had with the Chancellor of the Exchequer on the implications of the autumn statement for investment in new energy infrastructure.
The Minister of State, Department of Energy and Climate Change (Mr John Hayes)
My Department and the Treasury regularly discuss how to incentivise investment in new energy infrastructure. That is why we were able to reach agreement, paving the way for the introduction of the Energy Bill and the Chancellor’s autumn statement. These enable us to meet our legally binding carbon reduction and renewable energy obligations and ensure the investment required to bring affordable power to our nation.
Mrs Glindon
Given the recent announcement on consumer price rises, how will the Minister ensure that decisions over the next six months on investments in new nuclear generation capacity, before the Energy Bill is even on the statute book, will be made at the lowest possible cost to consumers?
Mr Hayes
The arrangements in the Energy Bill allow for precisely the eventuality that the hon. Lady describes: they allow final investment decisions to be made in concert with contracts for difference. She will know that we are in ongoing discussions about the Hinkley Point development. I cannot say too much about its commerciality, but she should know that we intend to proceed with that with alacrity and diligence. I am confident that new nuclear can play its part in an energy mix that is fit for the future.