First Motor Neurone Disease specialist research nurse introduced in North

The first Motor Neurone Disease Specialist Research Nurse has come into post at Altnagelvin Hospital.

A spokesperson for the Western Health and Social Care Trust (Western Trust) said it was "delighted" to make the announcement. 

They added: "This is the first role of its kind in Northern Ireland all thanks to the Motor Neurone Disease Association which has fully funded this research nurse.

"The Association’s ambitious £7.2 million Research Nurse Network will give more people diagnosed with motor neurone disease (MND) the opportunity to take part in vital research across Northern Ireland, England and Wales.   

"Research nurses provide people with MND information about research, identify trials they are eligible for, explain what is involved, and provide ongoing support if they choose to take part.    

"The new role, based at Clinical Translational Research and Innovation Centre (C-TRIC) and working closely with the Neurology Service at Altnagelvin, will integrate with the existing multi-disciplinary Neurology Service which currently supports patients with MND in Northern Ireland."

Experienced Specialist Neurology nurse Jacqui McKee has now taken up this vital role.

She said: “I feel privileged to be the first MND Association funded Research Nurse in Northern Ireland. The funding will help C-TRIC at Altnagelvin to continue to provide the latest clinical trials and potential treatments for this devastating disease, something I feel passionate about.

“I look forward to working collaboratively with research nurse colleagues across the country as they commence their roles and to share best practice.”

Sharon O’Kane became an Association visitor for the MND Association’s Northern Ireland branch in 2020, shortly after her brother Johnny died from the disease, leaving behind a young family.

She said: “Having witnessed first-hand what Johnny endured, I started volunteering as an Association visitor. My role is to offer emotional support, help and advice to people with MND and their families. It is extremely rewarding and I feel very privileged to be in the position to be able to help. 

“The most difficult thing about talking to people with a diagnosis of MND, and their families, is the sense of devastation they feel not only from getting a diagnosis but the knowledge there’s presently no cure. 

“That’s why this research nurse will be such a huge asset to us here in Northern Ireland. To have someone to be able to support and advise people, potentially offer them a chance to participate in clinical trials and most importantly give them some hope for the future when their outlook is bleak, is immense.” 

In time, MND Association Research Nurses will be embedded into the 24 MND Care Centres and Networks across England, Wales and Northern Ireland.   

Recruitment for research nurses at several other sites is already ongoing, with more on the way as part of the rollout.  

Tanya Curry, Chief Executive at the MND Association, said: “Our community has told us just how challenging it can be to get the information they need about taking part in clinical trials.

“It’s a complex process, and one which can rob them of precious time with their loved ones. This has to change. We want to give everyone living with motor neurone disease the choice to take part in and influence the future of MND research.

“Our MND Research Nurse Network will do just that, providing the support, expertise and knowledge needed to create equitable access to trials for all.

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“It’s a big investment – £7.2 million over four years – but one that will make a huge difference to people with MND and revolutionise how trials are accessed across England, Wales and Northern Ireland.”

Dr Gavin McCluskey Consultant Neurologist at the Western Trust, said: “Research is a vital part of finding better treatments for MND and critical in hopefully finding a cure. C-TRIC based at Altnagelvin has an outstanding reputation for delivering clinical trials and we look forward to bringing further clinical trials to Northern Ireland for patients with MND.

“We are delighted to receive and accept this funding from the MND Association, which will fund a dedicated MND trials nurse/research coordinator and enable us to continue this important work.”

For more information about MND and the MND Association please visit www.mndassociation.org