Tyrone volunteers needed in fight against Motor Neurone Disease

New volunteers are urgently needed in Tyrone and across the north west to help provide support for local people suffering from Motor Neurone Disease (MND), a charity head has said.

Speaking on Global MND Awareness Day on Thursday at the Millennium Forum in Derry, chairperson of Motor Neurone Disease Association Northern Ireland (MNDANI) Stephen Thompson admitted that the service is currently ‘very Belfast-centric’, despite the charity having initially established in the north west.

Mr Thompson was joined at the event by local politicians and also by individuals afflicted by MND.

“It’s been a very long haul to get to where we are in terms of resources,” Mr Thompson told attendees. “We’re nowhere near where we should be, of course, but we’re making progress. We have one neurological doctor in Belfast, who specialises in MND, but she is on the verge of retirement, and three specialist nurses, again, Belfast-centred. We’re trying to get them out of Belfast to train in other parts of the North; it’s a long struggle to get it right unfortunately.”

The Northern Ireland branch of the Motor Neurone Disease Association aims to provide the best possible support to local people with MND, their families and carers.

MND is the name given to a group of related diseases affecting the motor neurones in the brain and spinal cord.

It affects people in different ways, so no two people will have exactly the same symptoms or experience of MND.

“Ultimately, a sufferer’s whole body can be affected leaving them unable to walk or even speak.

“Budgetary issues and a lack of resources are the main problems,” Mr Thompson continued. “Ideally, we would like to set up another care advisor to be based in the north west, and grow the number of volunteers who can offer a sort of befriending service, pointing people in the right direction for anything they require.

“There is one lady, based in Drumquin, who would be our sole rep close by, although we have 11 all across the North.

“Again, they’re mostly based in Belfast, but that’s only because that’s where most MND sufferers would be; by definition there are less people west of the Bannm but that doesn’t mean they don’t need the service.”

Senior policy and public affairs advisor for MNDANI, Patrick Malone echoed the issues surrounding resources, commenting, “It’s very difficult to get resources to help MND sufferers with a severe lack of neurological services which could diagnose more people.

“At present, around 140 people across the North have MND that we know about, but there could be lots more who just can’t get the right diagnosis. Backlogs in health services from Covid, the lack of an Executive… are all contributing factors. We’re here to plant a flag today, and get people involved.”

Mr Malone concluded, “Today was a small start, but we will continue to do work in the north west now that the call for volunteers is out and we hope that people will read this and take up the baton.”

Anyone wishing to volunteer is urged to visit https://www.mndani.com/get-involved/