Duchenne UK joins families in Northern Ireland campaigning for the EAP
While some people have received givinostat via the Early Access Programme (EAP) in England and Wales, and Scotland’s Health Minister said his government will help remove barriers to it, there has been no such progress in Northern Ireland.
Meeting Minister of Health
That’s why it was so important to join a group of parents of children with Duchenne muscular dystrophy (DMD), and two children with DMD, as they met with Mike Nesbitt MLA, Northern Ireland’s Minister of Health, today.
Belfast Health and Social Care Trust is not giving access to the EAP
He has been aware of the issues about access and has spoken about it twice in the Northern Ireland Assembly, but that has not resulted in any progress with Belfast Health and Social Care Trust, the hospital that treats people with DMD in Northern Ireland.
While the EAP requires a hospital Trust to put some of its resources towards extra blood tests and appointments, it is unacceptable that there has been no progress with it in Northern Ireland in the six months since it launched.
This has been devastating for the parents. And very confusing.
If Leicester Royal Infirmary can give its patients with DMD this precious chance at keeping their muscles for moving longer, why can’t Belfast Health and Social Care Trust?
Monitoring the situation in Northern Ireland
We spent an hour with the minister and each family spoke about their experiences of living with DMD and the differences in quality of care.
This included experiences of very good cardiac and endocrinology care at Belfast Health and Social Care Trust, to excellent care at Great Ormond Street Hospital.
There was one common feeling. That they were not receiving good care from the neuromuscular service at Belfast Health and Social Care Trust.
The minister carefully listened to each family, and must now know that there are issues with that service – let alone the fact that it is not providing them access to givinostat through the EAP.
One very positive from the meeting was that we discussed the National Institute for Health and Care Excellence (NICE) health technology appraisal for givinostat, which will decide if it can be available on the NHS. The minister said that he would immediately ask for a paper with an action plan to prepare so, if and when NICE approves givinostat, it can be introduced in Northern Ireland in the most timely way.
We look forward to seeing that actioned, and will be monitoring the situation with care in Northern Ireland.
Liz Kimmins MLA, Minister for Infrastructure, who organised the meeting said:
“It was a very positive meeting. The minister really listened to what families said. We will continue to work with him to see how we can improve services for boys with DMD.”