Leading members of an NHS research network are heading to the Highlands next month to meet anyone interested in participating in the study of conditions such as Dementia, Huntington’s Disease, and Parkinson’s Disease.

The NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) is visiting Inverness, Wick, and Thurso with the aim of speaking to, and learning from, health and social care staff, community groups, and people with lived experience of neurodegenerative diseases.

It is part of the NRS NDN commitment to ensuring that “regardless of location in Scotland, we can explore and provide research opportunities for all”.

The trio of Network Champion Dr Tom Russ, Network Manager Jacqui Kerr, and Strategic Manager Dr Emma Law, will be starting off in Inverness on Monday 6 July, before travelling to Wick and Thurso on Tuesday 7 July, then returning to Inverness on Wednesday 8 July.

Tom said:

“With this trip, we are hoping to meet as many people as possible who have experiences of neurodegenerative conditions.

“We know that there are a variety of under-served groups when it comes to research participation who may be interested in taking part in studies.

“People can feel deterred by their location when there are actually options available to them so we’re reaching out to try and connect while exploring how we can support them to take part in research and make a real difference.”

Tom, Jacqui, and Emma have previously undertaken visits to some of the country’s most rural and remote populations, taking in Shetland, Orkney, Stornoway, and Ullapool since 2023.

In doing so, they gained many insights and fostered new relationships to help enhance inclusive research aims – and they hope the Inverness, Wick, and Thurso communities will be just as receptive.

The Network recognises that the people who participate in their trials are not typically representative of the wider population, and that in-person engagement can help to address the need for greater diversity in research while better understanding unique localised challenges.

Northern Scotland has, for instance, one of the highest prevalences of neurodegenerative disorder Huntington’s Disease in the world, where it affects approximately 14.5 per 100,000 people – more than five times the global average.

“Please do attend”

Tom, Jacqui, and Emma’s itinerary is:

Inverness, Monday 6 July

• 12-1pm – Meeting health professionals at New Craigs Psychiatric Hospital
• 1-2pm – Drop-in session followed by presentation/Q&A session
• 6-7pm – Public/community event at the Barn Church, Culloden, Inverness

Wick and Thurso, Tuesday 7 July

• 2-3pm Thurso Alzheimer Scotland Memory Café – An informal chat about research and opportunities to be involved
• 5-5.30pm Wick Assembly Rooms – Health professionals invited along for an informal chat about research opportunities
• 5.30-6.30pm same venue – Public/community invited along to hear about opportunities to be part of research

Inverness, Wednesday 8 July

• 2-3pm Meeting with clinicians and research staff at NHS Highland Clinical Research Facility. Research, Development, and Innovation Department, UHI House (Formerly Centre for Health Science), Classroom 1, Centre for Health Science

NRS NDN believes that the Highlands face significant challenges. By 2035, it is predicted that the number of people with dementia in the region will almost double to an estimated 8,000.

The remoteness of the region can, NRS NDN says, exacerbate issues such as social isolation, access to specialist healthcare, availability of support services, and participation in research.

Jacqui added: “We are very much looking forward to visiting as we aim to engage, inform, and explore opportunities to get involved in research of neurodegenerative disease regardless of location.

“We have already had such a positive response from health and social care colleagues after first reaching out about potential visits to talk about research in the NHS, and we’re now keen to enhance awareness of where we’ll be and when so that more have an opportunity to meet and chat.”

Emma said: “From previous visits, we recognise the challenges associated with delivering research in some parts of Scotland. We are keen to ensure that we explore them and that visiting can result in meaningful improvements in research access.

“Across Shetland, Orkney, Stornoway, and Ullapool, we met with people affected by dementia, Parkinson’s disease, MS, Motor Neuron Disease (MND), and Huntington’s disease – and clinicians working with them – to explore how any barriers to participation might be overcome.

“There are ways to do that, so please do attend one of our visits to discuss. You will be made very welcome.”

 

This article is written as part of a promotional agreement between NHS Research Scotland (NRS) and Healthcare News Scotland.

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