The article below first appeared in Westminster Extra. Nickie writes a monthly column for the paper.
As a Member of Parliament, I receive hundreds of emails, letters and phone calls every day from constituents covering an incredibly diverse range of subjects. Some are right at the forefront of people’s minds; others are still incredibly important but not always given the attention they deserve. As an MP I believe you have a platform, in parliament and beyond, to champion such issues and raise awareness of them. It’s what I intend to do as a Member of Parliament and why I have made an issue, raised by a constituent, the subject of my first campaign as an MP.
At the beginning of January, I received an email from Westminster resident Georgina Morton. Georgina wrote to me to make me aware of research she had been involved in on Metachromatic Leukodystrophy (MLD) and new-born baby screening. Before meeting Georgina, like most people, I had not previously heard of MLD.
MLD is a rare hereditary condition. People with it are missing a crucial enzyme. Without it, toxic material builds up in the body, damaging the nervous system. Unfortunately, this results in life changing disabilities amongst young children with the condition. Georgina knows first-hand the condition’s impact as her daughter Ava was diagnosed with it at five years old. Early diagnosis of MLD is crucial. The earlier MLD is identified and treated the better. This is often the case with other genetic conditions.
Georgina’s research however highlighted a flaw in our ability to ensure early identification in the UK. The UK comparatively screens new-born babies for far fewer diseases than other European countries. Screening allows conditions to be detected as early as possible, leading to earlier treatment with potentially positive life changing consequences. Currently in the UK, new-born babies are screened via a heel-prick test at 5 or 6 days old for 9 rare disorders. Other countries however screen for far more. Slovakia tests for 24 conditions, Hungary for 26 and Poland for 30. We are lagging even further behind Italy who test for 43 conditions.
I was shocked when I saw these numbers. It’s a disgrace that that we are trailing so far behind our Europeans counterparts. The UK should be leading Europe on this. I’m concerned that our current system is letting our children down. The UK should be leading the world in the field.
So, I’ve teamed up with the ArchAngel MLD Trust, as well as a coalition of affected families and immunology experts, for my first campaign as an MP. We are calling for a review of the current new-born screening programme to understand why we are lagging behind the rest of the world in screening for a host of genetic conditions. Our aim is to bring the UK into alignment with the rest of Europe and most of the world. If you agree having read this article, you can show your support at www.nickieaiken.org.uk/Archangel by signing our petition. There, you can also listen to my first podcast for more information.
Photo: Georgina's daughter Ava
