Children with Genetic Conditions: Specialist Support

Lord Austin of Dudley Excerpts

Tuesday 15th June 2021 Lords Chamber

[Baroness Berridge (Con)]

My Lords, as I understand it, this is the second most prevalent genetic disorder after Down’s syndrome. I will take back to colleagues at the Department of Health the request as to whether it is included in screening. This disorder apparently has a wide spectrum of effects, so some of those children are never identified during their school career, but the education, health and care plan should support them if they do exhibit a need for extra support. Diagnosis is not a precursor to having an EHCP; many are diagnosed, some within mainstream provision in schools and some in specialist provision.

[Lord Austin of Dudley (Non-Afl)]

My Lords, will the Minister hold a meeting to listen to representatives from the National Society for Phenylketonuria and young people with the genetic condition PKU so that the Government can learn more about the impact this has on children, their health and education, and consider what more the Government could do to help them? Would she be good enough to invite her counterpart from the Department of Health to join such a meeting as well?

[Baroness Berridge (Con)]

My Lords, noble Lords are wanting to put me in touch with my colleagues at the Department of Health today. I will take back that request, but I repeat that one of the key visions behind the 2014 reforms was that when a child exhibits a need for support they do not wait for diagnosis or any of that: schools or the family can get an EHCP and get the support in place that the child or young person needs.