Oral Answers to Questions

Paula Barker Excerpts

Wednesday 24th June 2026 Commons Chamber

[The Prime Minister]

I shall leave a note saying that what we delivered for Wales in these two years was the largest ever devolution settlement; the UK’s first small nuclear reactor, in Anglesey; investing £14 billion in Welsh rail; and a pay rise for 170,000 workers across Wales. I will end the note by saying, “We are lifting 70,000 Welsh children out of poverty—Keir Starmer”.

[Paula Barker (Liverpool Wavertree) (Lab)]

Q7. My constituent Jake McGregor-How, a 16-year-old with everything to live for, has been diagnosed with Friedreich’s ataxia—a rare neurodegenerative condition that is cruel and swift-acting. The average life expectancy of people diagnosed with it is just 37. Despite the NHS’s founding principle that care should be based on clinical need, not ability to pay, Jake’s father is crowdfunding to pay for treatment in Germany with a new drug, omaveloxolone, which has received clinical approval here but is not available through the NHS. Assessment by the National Institute for Health and Care Excellence has stalled. The condition is not classed as an ultra-rare disease, yet it is rare enough that any drug to treat it will struggle to meet NICE’s cost-effectiveness criteria.The family constantly have to raise enough money to pay for each round of treatment. Shockingly, Jake has recently undertaken a personal independence payment assessment and been turned down for much-needed support. Families should never have to crowdfund for treatment abroad for a life-threatening disease. Will the Prime Minister arrange for me and other colleagues who have constituents with this cruel condition to meet the Health Secretary to discuss a way forward?

[The Prime Minister]

May I start by sending my best wishes to Jake and his family? The change we have made to the way that NICE evaluates medicines is already increasing access to innovative new medicines. I will make sure that my hon. Friend gets the chance to meet a Health Minister to discuss Jake’s case and the related issues.