I have continued to support the national #LayDown4CF campaign, led by the parents of cystic fibrosis sufferers – including families in Colne Valley – pushing for the drug Orkambi to be made available on the NHS. Orkambi can be life-changing for sufferers of CF, but Vertex – the company which produces the drug – have rejected the NHS’s biggest pay offer ever of £500 million over five years.
I joined their protest in Parliament Square, which was partly a memorial to those lives lost from CF, and partly a plea to the government to step in and end the impasse. It is unacceptable that children’s lives are being held to ransom in this way and I was honoured to raise the case of local families in Parliament.
This week I’ve had two young men from Greenhead College complete their work experience in both my Westminster and Constituency offices. I love being able give my young constituents the chance to experience working in politics, particularly when they are so engaged and motivated.
As a member of the Education Select Committee, it has been my privilege to be involved in our recent inquiry into alternative provision. Student exclusions are predominantly affecting children in poverty and with special needs. The Alternative Provision options are not sufficient and are creating a new generation of young people who are not in schooling or employment, and who are excluded not just from school but from society and their communities.
I was asked to write an article on our report for the Every Child journal, which can be read here: