Spinal Muscular Atrophy

Debate between John Hayes and Mary Glindon

Thursday 25th July 2019 Commons Chamber

[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 John Hayes and Mary Glindon

Thursday 13th July 2017 Commons Chamber

[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?