On the 20th November Action Duchenne’s motion from our lobby in June was debated in Holyrood. Jim Eadie MSP for Edinburgh Southern for lead the debate with Jackie Bailie MSP (Dumbarton), Graeme Dey MSP (Angus South), Nanette Milne MSP (North East Scotland), Mary Fee MSP (West Scotland), Malcolm Chisholm MSP (Edinburgh Northern and Leith) all contributing.
The debate focused on research breakthroughs and access to drug trials in Scotland. Jim Eadie MSP highlighted how Scotland should contribute to international research saying:
“The Scottish Government, through the chief scientist office and the health research strategy, has an important role to play [in funding research]. A co-funding arrangement would allow greater value and greater resource to be generated by the chief scientist office, working in partnership with medical research charities and potentially other health departments in the UK, to support this pioneering research. That has the potential to deliver the genetic medicines that will benefit boys and men with DMD.”
All MSPs made important points about the recent breakthroughs in research. With Malcolm Chisholm MSP stating: “the chief scientist’s office has a significant budget for research and its current chief scientist, the brilliant Professor Andrew Morris, has a particular interest in the genetics of medicine. I hope that the Scottish Government will respond positively to Jim Eadie’s call for the involvement of the Scottish Government and the chief scientist in partnership funding for research“.
Michael Matheson MSP, the Public Health Minister, responded by saying that “the Scottish Government’s chief scientist office is happy to consider co-funding arrangements with leading UK medical charities in particular areas of research. I also reassure members that a large amount of the research that takes place in Scotland involves international collaboration“.
This is fantastic news for research opportunities for Duchenne Muscular Dystrophy in Scotland and Action Duchenne hopes that this is the start of a very fruitful partnership.
Other areas pertinent to those living with Duchenne in Scotland were also addressed, with Nanette Milne MSP saying: “DMD sufferers deserve the best possible care and support and state-of-the-art equipment to help them cope with their disabilities.”
Michael Matheson also addressed the challenges of providing the best standards of care for Duchenne. After a question by Jackie Bailie MSP, Mr Matheson advised that there had been ‘recruitment difficulties’ with the hiring of a Care Advisor in the north of Scotland, but that they would ‘monitor’ the situation during the re-advertisement of the post.
Mr Matheson also stated that the has been a £1.5million investment into improving services for people with complex respiratory conditions. This investment shall “help to recruit new specialists, whether they are consultants, dieticians, physiotherapists, nurses or allied health professionals, so that people can be treated more effectively locally.”
Action Duchenne will be meeting with MSPs and the Chief Scientific Office in the coming weeks to ensure that this debate acts as a catalyst to further progress. We will contiinue to work alongside the Scottish Muscle Network and the Muscular Dystrophy Campaign to ensure that thsoe living with Duchenne Muscular Dystrophy have access to the care they need and that Scotland continues on its route to become a “an attractive place in which to conduct world-leading clinical research.“