As the dust settles on the 2024 annual MS Trust Conference, we’ve had time to reflect on what an engaging, insightful and educational few days it was. In this piece, Caitlin Sorrell, Chair of Trustees, sums up the highlights that made a lasting impact on her.
My name is Caitlin, I'm the Chair of Trustees at the MS Trust. I don't have MS, but I do live with it. My husband was diagnosed 14 years ago, which is what led to me becoming involved with the MS Trust.
Summarising the MS Trust Conference is a challenge! How do you do justice to three days’ worth of symposia, seminars, posters, exhibitions, as well as the intangible, the side conversations, and the networking, where most of the magic happens? Well, I can't! So, in this blog I'm going to stick solely to the plenary sessions.
We started day one, with David handing over to Lucy as CEO and Lucy reminding us that every contact counts between health professional and patient. Paru Naik (Director of Services) then updated us about how sustainable this year’s event was. I'm really proud that at the MS Trust, we are taking this issue so seriously. This was followed up by Tania Burge (Head of Services) who spoke to us about the advances in the development training module, and the ongoing work on our advanced MS course. She also reminded us all of the support that the MS Trust offers for business cases, for getting those important Specialist Nurses and Advanced MS Champions into your teams.
Professor Eli Silber then challenged us to think about conversations versus consultations. He recommended that we view the whole patient, that we consider their trauma and urged us to have conversations about end of life and palliative care with compassion, and respect.
He then handed over to Lou Jarrett (MS Trust Lead Nurse Specialist) and Hannah Foley (MS Nurse), who talked about their reflective practice. They reminded us of the importance not just of what we do, but how we do it. One of the things that stood out from this session is the semiotic filter through which our patients view us. I'm really glad that they then put it in language I could understand, which is the Instagram filter of the caring nurse through which your patients view you. They also talked about how some conversations can be hard to manage, and how the strain of holding on to the distress of patients, can also take its toll.
Professor Rona Moss-Morris then spoke about multiple sclerosis and mental health. She reminded us of the cost of mental health comorbidities and advised us all to screen for distress. She spoke about how ideally every patient would receive psychological therapy that was specific and tailored for people with MS. However, I think we can all sadly agree that we're a long way away from being able to offer that.
On day two, we had the Helen Ley lecture where Dr Ana Miorelli, or Dr Ana as her patients like to call her, talked to us about low mood. She reminded us of the prevalence of low mood issues and the worse outcomes for people with MS who suffer depression and anxiety. She spoke about distress at the point of diagnosis being normal but reminded us that distress can occur at any point and regardless of the level of disability. She also advised us to bear with grief and distress and reminded us that your role can simply be to reduce uncertainty and give hope.
We then had a guest lecture where Noreen Barker (MS Nurse Consultant), Michelle Hogan-Tricks (Neurogenic Clinical Lead) and Dr Claire Winchester (Head of Information and Engagement, MS Trust), urged us to break the #LooTaboo! I was stunned to hear that ten years after diagnosis 91% of patients have bladder problems and 78% of patients have bowel issues. We discovered that bladder is the third most life limiting symptom experienced by people with MS. Sadly patients often have symptoms for months or even years before they actually pick up the courage to speak to their health professional. We all need to help break the #LooTaboo.
Finally on day three, Professor Gavin Giovannoni, Tania Burge (Head of Services, MS Trust), Lou Jarret (Nurse Consultant, MS Trust) and Susan Hourihan (Lead Occupational Therapist) spoke eloquently about time. How time within a consultation is always under pressure, and is affected by the nature of that consultation. How the time it takes to initiate treatment is so important, as is the time our patients have to wait on those hideous waiting lists. Most importantly they reminded us to treat each patient as an individual.
And that brings me onto my thematic reflections. Over the last few days, Belinda, Kurti, Tia, Adrian, Chris, Laura and Rachel are just some of the people with MS whose voices have been brought to life here at Conference. I am delighted that we had so much insight directly from patients, because as several speakers have mentioned, it is so important to view the patient as an individual, and as a whole.
Health professionals were urged many times during the Conference to have difficult conversations; talk about mood, talk about end of life, talk about bladder and bowel, talk about exercise, talk about cognition, talk about sex, talk about menopause. We ask you to make every contact count, to give hope, but without sugar-coating it!
All these things are really important, and they do need to be talked about. But we ask a lot of health professionals and I wouldn't be surprised if you were reading this feeling slightly overwhelmed. My parting reflection for you is we don't expect you to have all the answers. You just need to be ready to ask the questions and start the conversation.
As I said, we ask a lot of you, but as the wife of a patient with MS, I want to take this last moment to thank you all for everything that you do, day in, day out. And on that note, I look forward to seeing many of you at the MS Trust Conference in 2025. Thank you very much.
