Duchenne Muscular Dystrophy

Euan Stainbank Excerpts

Thursday 12th June 2025 Commons Chamber

[Chris McDonald]

Yes, my hon. Friend is absolutely right about that. Time is muscle, as she says. Sadly, because the drug is currently only available, in the areas where it is available, to lads who are ambulant, the waiting time has meant that some lads out there who would have qualified for the drug now no longer do so. That is, frankly, heartbreaking. Of course, the use of one’s legs is not the only thing people are concerned about. We need to be able to use our arms to be able to dress ourselves, feed ourselves and brush our teeth, and givinostat could help with that.

It is very disheartening that while coping with all of this, families, parents and carers and so on are having to fight for access to the drug on a trust by trust basis. They have done that with the support of all the Members in the Chamber tonight. I am very grateful for the fact that they have turned up, because I know families are watching.

I also want to mention some Members who have approached me who would have loved to have been here but cannot be due to other commitments in the House. My hon. Friend the Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) has campaigned on this subject for many years and chaired the all-party parliamentary group. A constituent of my hon. Friend the Member for Basingstoke (Luke Murphy), who has the disease, visited Parliament on Monday and was so pleased to see on the Annunciator that we were having this debate. My hon. Friends the Members for Bury North (Mr Frith) and for Bury South (Christian Wakeford) worked together to ensure that Manchester university NHS foundation trust does now provide the drug to their constituents. William from Codicote, a constituent of my hon. Friend the Member for Stevenage (Kevin Bonavia), is living with Duchenne. The hon. Member for Chester South and Eddisbury (Aphra Brandreth) has been supporting Mr and Mrs Binns, whose son Jack has Duchenne. They do not yet have access to givinostat and are trying to get it. I have also had representations from my hon. Friend the Member for Beckenham and Penge (Liam Conlon), the hon. Member for Westmorland and Lonsdale (Tim Farron) and my hon. Friend the Member for Altrincham and Sale West (Mr Rand).

We can see that there is broad support across all parties in the House, with Members working with their constituents to try to secure this drug which is free of charge—free of charge—to the NHS. We have heard that provision is very patchy across England. There is some central co-ordination in Scotland, but no lad in Northern Ireland can access the treatment.

[Euan Stainbank (Falkirk) (Lab)]

I thank my hon. Friend for securing this debate. It is important to acknowledge quality of life with this drug, but we also have to acknowledge that many people with Duchenne are living with 24/7 care needs, including my constituent, Dylan Phillips, who lives at the excellent care home in Glenbervie. Does my hon. Friend agree that those living with Duchenne in Scotland should be protected as they would be in England under continuing healthcare schemes, rather than having to bear the cost of their social care and living on only £35.90 a week with universal credit and adult disability payment, as they do not qualify for continuing healthcare in Scotland?

[Chris McDonald]

The important thing for us to consider here is that with only 1,100 or 1,200 lads and young men in the country living with the disease, and only 500 boys eligible for the treatment, we could at least expect some consistency in approach across the whole of the United Kingdom.