PM backs support plea to aid muscular dystrophy
Theresa May pushed by Chesham and Amersham MP to help sufferers in the UK
THE Prime Minister has backed calls to make support available to people with muscular dystrophy following a young boy’s fight for pioneering treatment.
Chesham and Amersham MP Cheryl Gillan pushed Theresa May at Prime Minister’s Questions for answers on whether sufferers of the disorder, like Archie Hill from Chalfont St Peter, will have access to support under a newborn screening programme.
Archie Hill, 11, and his family, from Chalfont St Peter, successfully fought for access to life-chang- ing muscular dystrophy drug Translarna last year.
The Hills have also spoken about the need for the right psychological support for people living with Duchenne muscular dystrophy, a devastating muscle-wasting condition which currently affects around 2,500 people in the UK.
The Prime Minister agreed on the need for appropriate psychological support and flagged the work that Muscular Dystrophy UK is doing with NHS England to better understand what is needed.
While there is not yet an effective newborn test for the disease, rapid progress has been made in recent years, and Muscu- lar Dystrophy UK is hoping it could be made available through the national Newborn Screening Programme soon.
The charity is campaigning for the NHS to develop the right psychological support before screening begins to ensure that families are supported through the difficulty of diagnosis and planning for the future.
Archie’s mum Louisa Hill said: “Mental health is so easily overlooked when someone is diagnosed with urgent physical health needs, and it is great that Cheryl, as our local MP, has raised the issue with the Prime Minister.
“We know first hand how the right psychological support can make all the difference in what is such an extreme and heartbreaking situation, and hope that families in the same position as us in future get the support too.”
Nic Bungay, director of care, campaigns and information at Muscular Dystrophy UK, said: “The Prime Minister’s backing will really help to get the NHS signed up to provide the right psychological support for people diagnosed and living with Duchenne muscular dystrophy. We couldn’t have won her support without the campaigning of families like Archie’s.
“Hopefully, an effective test for Duchenne will soon be available and we are working hard to make sure that it can be put into action as smoothly as possible.”
Cheryl Gillan MP