The Island Experience

Southampton and Aberdeen hospitals

Nov 2021 A viewpoint from some of our island participants and research staff.

There are many beautiful islands in the UK, both near and far from the UK mainland. Our aim is for people living with MND anywhere in the UK to be able to enter the trial where it is safe to do so. We are delighted to have been able to recruit people to MND-SMART from these locations, with some participants travelling over 260 miles to their appointments.  

All the MND-SMART research teams across the UK are working hard to recruit and follow-up people with MND. We asked participants from the Orkney Islands and the Isle of White to share with us what it was like to participate in the Trial. We also asked the teams in Aberdeen and Southampton what it was like working with participants on islands at both ends of the UK.

I am so grateful to have the opportunity to take part in MND-SMART clinical trials. While I live in hope that I may have a 'miracle drug', I also feel strongly that the only way forward to lessening the impact of this condition is through research. 

We are overwhelmed by the care and kindness of the Aberdeen team at my initial assessment, who truly went above and beyond to make everything work as smoothly as possible for us, as we travelled from Orkney. It has given me great confidence in the trials, and being in easy contact has been very reassuring.

Irene MND-SMART participant living in the Orkney Islands

It has been our privilege to work with all the participants in the study, who have each shown dedication and enthusiasm, with no complaints about the tests and assessments we put them through. A first for our Research Network is being able to recruit participants from the Orkneys and Shetland, as well as being able to recruit people who do not speak English. Usually trials do not allow the use of interpreters, or are not flexible enough to enable island residents to take part.

Alison McBainClinical Studies Officer (Neuroprogressive and Dementia Research Network), Aberdeen

I first heard about the SMART trial from Dr Pinto about 2 years ago and after reading about it, registered straight away. Unfortunately the pandemic delayed enrolment but as soon as I was contacted I was eager to proceed.

Just the knowledge that there may be some help available, not a cure, but something that could ease the symptoms was encouraging. Although I was nervous about the tests for the Trial, once I was accepted for SMART it was a relief. I was anxious about the side effects of the drug, I didn't want to feel ill and fall at the first hurdle, but I've been absolutely fine. I feel well in myself and haven't had any deterioration in the 4 1/2 months I've been on it. I feel positive about being on the Trial.

I'm not under any illusion that there is a cure at this moment in time, but I feel proud of myself and my husband for undertaking the Trial and feel proud that I might be doing my bit in the fight against MND.

AnitaMND-SMART participant living on the Isle of Wight

The Trial office are always on hand and were there to advise when we had a query regarding travel compensation/overnight hotel stay for a patient from the Isle of Wight. Aside from that, it hasn't been any different recruiting a participant from the mainland thanks to the courier service for delivering Trial drug which helps our ability to conduct visits remotely.

Overall, delivering MND-SMART at University Hospital Southampton has been incredibly rewarding. It's an intensive study in terms of coordination and planning, but it is all worthwhile to be able to offer access to interventional research opportunities for people with MND.

Ashley VillanuevaSenior Clinical Trials Assistant, Southampton

Even without the need to cross water some of our participants travel considerable distances to participate in MND-SMART. The trial management team would like to extend their heartfelt thanks to all participants, and their families, for attending their appointments. Thanks also to all our research trial colleagues whose dedication and support help make the trial possible. We couldn't run MND-SMART without them.  

This article was published on: Thursday, 11 November, 2021