Business of the House

Samantha Niblett Excerpts

Thursday 16th April 2026 Commons Chamber

[Sir Alan Campbell]

As has been said on a number of occasions in Business questions and beyond, the Government are absolutely of the view that such delays are unacceptable. This is not the service that people deserve, and resolving it is a matter of the utmost urgency. An urgent recovery plan is under way, and loans are available in the meantime to provide immediate financial support where it is needed. As the right hon. Gentleman reasonably requests, I will write to the Cabinet Secretary and make her aware of the situation, and get an update for him.

[Samantha Niblett (South Derbyshire) (Lab)]

I recently met an incredible woman, Rachel Liew, a constituent of mine who joins us today in the Gallery. Following the devastating loss of her five-year-old son Sam in 2021, she has channelled unimaginable grief into extraordinary action. Sam’s death was due to FIRES—febrile infection-related epilepsy syndrome. That is a rare condition within NORSE—new onset refractory status epilepticus—which can suddenly strike previously healthy children and remains poorly understood. Through her charity, Sam’s Superheroes, Rachel supports families, raises awareness and funds vital research. Will the Leader of the House help to secure a meeting with the Secretary of State for Health and Social Care, to discuss increasing funding, improving research co-ordination and strengthening clinical support for families facing this catastrophic condition?

[Sir Alan Campbell]

My hon. Friend raises a very serious matter, and I join her in thanking Rachel for her dedication to this issue following her tragic loss, and for the work of Sam’s Superheroes. I join my hon. Friend in awe, as I simply do not know how parents cope with the loss of a child, let alone then to go on and campaign—it is remarkable what some people are able to do. Through the UK rare diseases framework, the Government remain committed to improving the lives of people with rare diseases, including conditions such as FIRES, and I commit to helping my hon. Friend arrange that meeting with the Secretary of State so that they can discuss the matter in detail.