Spinal Muscular Atrophy: Newborn Screening Test

Stuart Andrew Excerpts

Monday 22nd June 2026 Westminster Hall

[Stuart Andrew (Daventry) (Con)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this important debate on behalf of the Petitions Committee. The debate is an example of Parliament at its very best.

I also acknowledge Jesy Nelson and her tireless efforts to raise awareness of spinal muscular atrophy following her twin daughters’ diagnosis with the condition. Little Mix have long used their platform to support a wide range of charitable causes, and I express my sincere thanks for their continuing to do so. However, to open up about something so deeply personal goes a step further. I also pay tribute to all the other families who have opened up to so many Members of Parliament.

I have often spoken about my time working in children’s hospices, and it was always the families’ stories that made compelling cases for the extra support that was needed. I acknowledge the work of Spinal Muscular Atrophy UK, whose dedication to supporting individuals and families affected by SMA continues to make a meaningful difference in countless lives. In this country we are lucky to have so many wonderful charities that help families through difficult times.

As we have heard, SMA is a progressive condition that causes muscle wasting and weakness. It is a most awful condition that is not reversible with treatment and, as we have heard, there are several types. SMA type 1, which my right hon. Friend the Member for Melton and Syston (Edward Argar) talked about Harvey having, is a severe form that develops between birth and six months of age. Without intervention, life expectancy is often less than two years. Type 2 develops between six and 18 months of age; children usually cannot walk unaided and may suffer respiratory complications into adolescence. Type 3 develops after 18 months of age; individuals can usually walk independently, although that may become progressively more difficult over time.

Before 2019, there were no effective drugs available on the NHS to treat the condition. However, over the last seven years, three transformative treatments that can stop SMA in its tracks have become available on the NHS: one is administered by a lumbar puncture every few months; the second is gene editing infusion; and the third is a treatment that patients must take orally for the whole of their lives. There is encouraging evidence that those treatments really are helping.

We have heard that SMA cannot be reversed, but NHS data from 2023 shows that children with SMA 1—the most severe form of the condition—are now surviving for longer. For families affected by an SMA diagnosis, time is everything, so that is an important start. When I worked in children’s hospices, I saw so many families go through incredibly difficult times. As the hon. Member for Portsmouth North (Amanda Martin) mentioned, it is not just about caring for a child; there is the impact on relationships, family finances and even sleep. I remember one father saying to me that if he got up eight times in the night, he considered that a good night’s sleep.

We had a saying in the children’s hospices: while we cannot add days to their lives, we can add life to their days. However, in this case we can literally add days to their lives, and we really should do so. I agree with my right hon. Friend the Member for Melton and Syston that the Minister is very diligent and clearly cares, but will she tell us how many babies and children are currently receiving the drugs I mentioned from the NHS? Will data continue to be collected to give us fresh insights into the effectiveness of those drugs over time? While the damage inflicted by SMA is irreversible, if treatment is given before symptoms begin, that damage can be prevented. Screening can therefore be an absolute lifeline for babies and families if SMA is caught early. That is why we welcome the UK National Screening Committee’s recommendation to introduce in-service evaluation, which will see newborn screening for SMA trialled in the UK, and the role that the former Secretary of State, the right hon. Member for Ilford North (Wes Streeting), played in all that. It is a positive step forward.

I want to add my voice to those of other Members today, and put some questions and points of clarification to the Minister. The ISE, recommended by the National Screening Committee, will evaluate newborn screening for SMA for some newborns in England, commencing in October 2026. However, as we have heard, reports suggest that about one third of newborns will initially not be included. Will the Minister explain the logic behind the choices that have been made?

As I understand it, the seven NHS newborn screening laboratories in England that will undertake screening are in Birmingham, Great Ormond Street, Manchester, Newcastle, Sheffield, south-east Thames and south-west Thames. Government statistics do not suggest that babies born in those regions are more likely to have SMA, and there appears to be no correlation at all between instances of SMA and the location of the centres chosen to screen newborns for the condition. I could also find no correlation with the efficiency of delivery for the screening programme. That begs the question: what is the rationale for choosing just those centres, and why have others not been chosen?

A baby born today who is screened and treated straight away is likely to walk at three years old. One born in a non-screened area, who is treated only when they become symptomatic, is very unlikely to walk and may not even be with us for very long. NHS England is responsible for organising the screening, but we know that the Government are going through with its abolition, along with the reorganisation of integrated care boards, so what assessment has the Minister made of the impact the restructuring may have on the capacity to deliver screening? That is an important point to bear in mind.

There are other conditions that are excluded from newborn screening, such as metachromatic leukodystrophy. I met a mother who has been campaigning hard on that, along with other campaigners. Will that condition and others also be included in newborn screening in the UK? Surely we should help if we can, because, as I say, the impact is really difficult for those children and their families. I am a huge fan of early intervention, so if we can do something about it early on we should—I cannot remember which hon. Member said this, but even if we just look at it through the hard lens of finances and public money, we would save a huge amount of money over the years.

It is desperately sad to see babies and their families affected by SMA. I hope that the Minister can provide some reassurance to those families that the forthcoming screening that they have long been fighting for will be fair, effective and accessible to all newborns in the UK. As I mentioned, the families I used to work with in children’s hospices would often say that, when their child was born or diagnosed with whatever condition it may be, their hopes and dreams for their child changed. When the baby was first born, they thought about the first day at nursery, primary school or secondary school, and then doing exams, going on to get married and have children and so on, and suddenly those dreams had to change because their life would be different. If we do this screening, some of those families, can keep their original dreams and we can add days to the lives of those children.