Students support MND research awareness with a conference

Soon after 8 medical students at the University of Southampton volunteered for the Motor Neurone Disease Association (with their local Southampton and Winchester branch) and created an MND Association MedSoc group at the University, they decided to organise an MND conference in February 2020 to raise interest amongst medical students and other healthcare professionals.

Among those who took part was the Association’s Director of Research, Dr Brian Dickie. He said: “It was a really good conference: broad ranging, informative, thought provoking and fun. But for me the biggest highlight was seeing the wonderful way the medical students have engaged with the local branch. Their enthusiasm was infectious!”

The conference was titled “You’ve got motor neurone disease, I’m sorry there is nothing we can do”. This is a statement that is reiterated to patients but one that is not necessarily true. Although therapeutic options are limited in what they can offer to a person living with MND, the students wanted to explore other interventions available to patients and their families.

Rather than organising a conference that focused solely on the biology of the disease, the event aimed to increase awareness about the disease amongst medical students and healthcare professionals (physicians, nurses, psychologists, sociologists, physiotherapists, carers and any healthcare professional that may come in contact with people living with MND) and highlight the biopsychosocial factors that affect people living with MND and their families.

Biopsychosocial impacts, as the name suggests, reflect on the development of disease through the complex interaction of biological factors (genetic, biochemical, etc.), psychological factors (mood, personality, behaviour, etc.) and social factors (cultural, familial, socioeconomic, etc.).

Among the student organisers of the event were Adama Luca, Kiran Robbin, Sanjai Rajendiran, Samyak Jain and Collin Chong who have been great in engaging with their local MND Association branch on various activities.

Despite the wet and windy start of the day on 22 February 2020, the conference welcomed over 60 attendees including people living with MND, medical students, healthcare professionals and the Dean of the Medical School, Professor Diana Eccles, at Southampton General Hospital. Other attendees included family members affected by MND, carers and volunteers supporting people with MND.

Event speakers

Six speakers supported the event including help from retired palliative consultant, Dr Richard Sloan, who mentored the students. The event’s speakers were incredible and covered various aspects of MND.

Dr Brian Dickie – Director of Research Development, MND Association

Dr Richard Sloan introduced the event followed by a talk from the Association’s Director of Research Development, Dr Brian Dickie. Brian highlighted the considerable challenges in understanding and treating MND: the multifactorial nature of the disease, with many different causes and multiple cellular events occurring; the delay in diagnosis, the variation in disease progression and the cost of drug development and clinical trials. He then went on to explain how each of these challenges is being addressed and how the field is being driven by an explosion in new knowledge about the disease, which in turn is stimulating new treatment strategies and ways of testing new therapies more efficiently and effectively.

Dr Richard Sloane – Medical Director of Weldmar Hospice care Trust in Dorchester (Retired).

Next, Dr Sloan shed insight into the place of palliative care in MND, using his 20 years’ experience as the Medical Director of Weldmar Hospice Care Trust. He reemphasised that palliative care can be considered right from the point of diagnosis and should not be withheld until the disease has progressed.  He reviewed various symptomatic interventions, including the MND Association’s ‘Just in Case’ kit.

Dr Smita Jain – Consultant Gynaecology Surgeon, Southampton Treatment Centre

Focusing on the psychological aspects of MND, Dr Smita Jain, whose husband has been diagnosed with MND, then spoke about ways of dealing with the emotional aspects of MND, for both patients and carers. She detailed various strategies, including breathing exercises and meditation, with lots of opportunity for audience participation.

Dr Kathy Kendall – Assoc. Professor in Sociology as Applied to Education, Faculty of Medicine University of Southampton

After lunch, we were introduced to the life and teachings of Morrie Schwartz by Dr Kathy Kendall in her talk “Lessons from Morrie on what we can do”. Morrie Schwartz was an American sociologist whose experience of living with MND was documented in the best-selling book Tuesdays with Morrie. Dr Kendall focused on the biopsychosocial aspects of MND and what we can do for people living with MND as well as their families and friends.

Cathryn Pinto – PhD in Psychology, University of Southampton

MND Association-funded PhD student, Cathryn Pinto, was among the list of speakers. Her PhD is aiming to develop a web-based intervention to improve psychological (mood, personality, behaviour, etc.) wellbeing among people with MND and their family/caregivers. In her talk, Cathryn discussed the psychological and emotional experience of living with MND, what factors can cause emotional distress and ways in which we can help people cope in a more positive way.

Professor Karen Morrison – Dean of Education in the Faculty of Medicine, Health and Life Sciences at Queen’s University Belfast

The final talk was by Prof Karen Morrison, previously the Associate Dean at Southampton. Her career has encompassed clinical and research work on disorders of motor nerves, taking her from Oxford, Yale, and to the University of Birmingham. She spoke extensively about her highlights of the progress being made in motor nerve diseases including recent gene therapies for spinal muscular dystrophy, improvements in multidisciplinary care, reducing diagnostic delays in diagnosis and improving pathways for appropriate clinical trials and gene therapy trials in MND.

Aiming to make the day varied and fun, the event included a raffle draw with attractive prizes including a signed 2019/20 Southampton FC pennant signed by all players.

The event successfully left attendees with more knowledge about support available for patients and encouraged them about the progress towards treatments and improved care in MND. On top of hosting such an informative and successful day, all profit and donations were given to the MND Association Southampton and Winchester group, and more members and volunteers were recruited.

“The day was very successful and exceeded my expectations! It was great to see how well medical students worked with the MNDA Southampton and Winchester group volunteers. With the support of our speakers, we raised awareness about MND, recruited some new volunteers and raised money for the Southampton and Winchester group. I am looking forward to our next conference!” said Adama Luca, medical student and event organiser.

A big well done and thanks to the MND Assoc. MedSoc students who made the event happen and for their contribution to this blog post, the speakers for their time, as well as MNDA Soton and Winchester group volunteers and members who continue to support the cause!