Tanya Van Der Westhuizen is a Research Practitioner at the University of Edinburgh and has been working on MND-SMART since the trial launched in January 2020. She is part of the team recruiting people from NHS Lothian and surrounding areas. She says that despite Covid-19 being 'a taxing time to recruit to research', she is proud to share how 'exceedingly hard' the team has worked throughout the year to make sure that MND patients could be seen and enrolled in the trial.
Tanya has had a difficult, but rewarding year after being redeployed to the intensive care unit during the Covid-19 pandemic. She has been recognised for her contributions to MND research by winning the Euan MacDonald Centre's 2021 Hampton Award and being celebrated by NHS Lothian during the annual Health and Social Care Support Workers Week. We asked Tanya to take some time out of her day to tell us about her experiences of the trial.
Interview with Tanya
Why were you interested in getting involved in neurology research?
I first moved to Edinburgh and started a job working in the neurology department. I found a passion and love in working with patients with neurological disorders and conditions. I really wanted to work in research so that I could help with the development of new therapies and treatments which will be beneficial to people living with neurological conditions.
Tell us about your role in MND-SMART?
I currently work as a Research Practitioner in MND-SMART at the Anne Rowling Regenerative Neurology Clinic in Edinburgh. I am responsible for contacting and recruiting participants to the Edinburgh site. I organise patient appointments and perform patient outcome assessments such as respiratory function tests. I also work with our couriers to organise delivery of trial drug when necessary.
When I'm not working with patients, I make sure all our trial documentation is up to date and help with monitoring visits and reports. We have to send documentation and logs to the trial Sponsor every 3 months. It is also important that we feed back all information to the trial team about what is working and what is not working so that we can implement amendments if needed.
What are the challenges and rewards of working on the MND-SMART trial (particularly in the advent of Covid-19)?
I think we at the Edinburgh site were lucky as we could still recruit participants during a lot of the pandemic. The main difficulty faced was that the rooms had to be big enough to accommodate 3 people with social distancing. The training for new medics was also difficult as they could not be in the room due to capacity issues, so a lot of training was done over video.
As part of our strategies to reduce the spread of Covid-19, we couldn't carry out respiratory function tests or process blood samples for several months. I was responsible for keeping the documentation to record this up to date.
Adapting to these changes was tricky but the reward was that we could still bring in participants and that was very important because there were people who registered on the website when the trial was first launched. It is so rewarding to come in and talk with the participants at every visit and for them to tell us about themselves. I mean, what's a greater reward than working on a trial that aims to find new medications to slow down the rate of progression in MND.
What advice would you have for research nurses working on the trial?
Talk to the participants and get to know them. They've been given a difficult diagnosis and may need someone to talk to. From an administrative side, always check everything has been filled in after the visit and signed appropriately, it's easy to miss this when we get busy.
What are your hopes for the trial going forward?
I really want there to be treatment options available for people with MND so that their quality of life improves and they get to spend longer with their loved ones. The dream would ultimately be a cure, but I know we must take this one step at a time.
What do you like doing when you're not working?
I am a very activity-based person and love going to different places with my partner, friends and family. In the past two months I have visited the Highland Wildlife Park to see the animals, the corn maze in Cupar to pick pumpkins, experienced a light show at Hopetoun House and enjoyed an orchestra performance in a planetarium.
I really enjoy doing these nice things in my spare time as the participants I speak to on the trial have stated that people need to live their lives by doing things that make them happy. This year, I have taken their advice on board and am really enjoying doing things I love with the people I love, as often as I can. It has given me a wholesome way of living.