Spinal Muscular Atrophy: Newborn Screening Test

Edward Argar Excerpts

Monday 22nd June 2026 Westminster Hall

[Edward Argar (Melton and Syston) (Con)]

Thank you very much, Mr Mundell. It is a pleasure to serve under your chairmanship. I will seek to speak relatively briefly.

The hon. Member for Sunderland Central (Lewis Atkinson) set out the case behind this petition eloquently, reasonably and with passion. Every year in the UK, 48 babies are born with SMA, with 60% of those having the most severe form: SMA type 1. I was moved to speak in this debate not only as a former Health Minister, but particularly after hearing from my constituent Charlotte. She told me about her son Harvey, who sadly passed away at just shy of seven months old. She very movingly set out her experience to me, and has kindly allowed me to share it with the Chamber today.

I pay tribute to Charlotte and her family for their courage and willingness to share something so personal not just with me as their Member of Parliament, but with hon. Members and more widely. I hope hon. Members will bear with me; I want to quote Charlotte fully, because what she relates is extremely important:

“On 15th March 2017 I gave birth to my first child. A beautiful blonde haired, blue eyed boy—Harvey. He was perfect. He was also unbeknown to us born with SMA Type 1.

As first time parents, having navigated the difficult journey of IVF, we were like rabbits in the headlights and had no idea anything was wrong—but in hindsight the signs were there quite early on. It was only through the concern of a Health Visitor when Harvey was 10 weeks old did the journey to his diagnosis begin. She had sadly come across another baby with SMA 1 earlier in her 30-year career and recognised the signs.

What Harvey went through to be diagnosed via multiple tests and what we went through as his parents was traumatic. Three weeks later we were then told by a room full of medical professionals that he had SMA Type 1 and at the very best he would live to two years old.

I will never forget that meeting, or the box of tissues that were slipped through the door just in case we needed one. I will never forget the walk out of Leicester Royal Infirmary that day, the day our ‘happy bubble’ burst & our lives changed forever. Nor will I ever forget the subsequent times when we had to go back to LRI when Harvey had stopped breathing and I resuscitated him, or to be trained in how to feed him via a nasal feeding tube.

In 2017, treatments were still at trial stage. We as Harvey’s parents decided not to treat Harvey with drugs that hadn’t been approved by NICE, nor did we want to put him through anymore trauma. An unimaginable decision to make, but we decided to focus on him and his needs as they changed whilst making memories together.

Harvey died on 14th October 2017, he was a day shy of being 7 months old.”

Charlotte told me that she and others in her situation were told that change was coming—that there would be an advancement in treatment, and that gene therapy and better diagnosis were on the way. As the hon. Member for Sunderland Central set out, those treatments do exist. There are three effective treatments for SMA in the UK, but as with so many health conditions, and as I saw during my tenure as a Health Minister, all too often, speed of diagnosis is everything.

The disease needs to be caught early, hence the benefits of newborn screening. I pay tribute to the former Health Secretary for bringing forward the ISE to October of this year, and I am grateful to him for that, but as the hon. Member for Sunderland Central set out, only 72% of babies in England will be included, so a large proportion—160,000—will not be screened. The hon. Member for Strangford (Jim Shannon), who has now left, highlighted the divergence in access across different parts of the United Kingdom of Great Britain and Northern Ireland, as did the hon. Member for Sunderland Central.

Until and unless the National Screening Committee makes recommendations on routine screening, many of those babies will miss out. I have seen how systems within the NHS work, often for good reasons—safety and rigour—but sadly that suggests that routine screening will not happen until 2030 or 2031. That is an awfully long time to wait and an awful lot of newborns who will be left unscreened and therefore potentially vulnerable to SMA.

In conclusion, and in paying tribute to Charlotte and her family, I have a question for the Minister, whom I know and have stood opposite on many occasions, both in government and now in opposition. I know that she cares, takes her brief extremely seriously and is a very diligent and caring Minister. My question to her, in Charlotte and Harvey’s name, is very simple: what steps can the Government take to speed up the process to add SMA to the NHS newborn heel-prick test for all newborns in this country?