With hope and action to the fore, clinicians, researchers, academics and experts by experience provided attendees with more than enough content to get them not only to think, but to act too.
In fact, the day provided an A-E of actions to focus on.
Delegates at St Christopher’s and King’s College Hospital’s Motor Neurone Disease (MND) annual conference 2024, entitled Hope in Action, were treated to an outstanding set of presentations, by turn stimulating, informative and moving
Advocating
Putting people living with MND at the heart of research and care and giving them a voice in the process was a recurring them of the conference. Richard Cave, Speech and Language Therapist, MNDA and University College London Global Disability Information Hub Research Fellow, called on those involved in the development of new technological innovation to support this patient group to seek their input more often.
Richard Cave, Speech and Language Therapist, MNDA and University College London Global Disability Information Hub Research Fellow
Richard Cave, Speech and Language Therapist, MNDA and University College London Global Disability Information Hub Research Fellow
Theresa Chiwera, Lead Research Nurse and Senior ALS Clinical Trials Manager at King’s, highlighted how researchers had listened to patients when designing new drugs trials to be quicker. The First UK Platform trial which, rather than taking the typical decade from test to delivery, operates more flexibly conducting ongoing analysis and swapping drugs in and out depending on their effectiveness.
As is often the case, hearing from people living with MND provided some of the most compelling moments of the conference. In this case, delegates got to hear two patients advocating for themselves – Eleanor and Sukdhev, a middle-aged woman, and an older man who share the same SOD1 gene, known to cause MND. Both have multiple family members who have had MND. Both are now receiving monthly doses of a drug called Tofersen via lumber puncture.
Eleanor explained the impact. “It took six months to think something was happening, but I am pleased to say it has stopped in its tracks. I have no further symptoms. In fact, I can still walk and whereas I couldn’t cross my legs, I can now. There are things I can still do independently and that is massive to me.”
Speaking on Sukdhev’s behalf, his son, Hardeep, said; “Our story is a positive one. We have had exposure to something others haven’t and Dad’s quality of life has been very good.”
As well as running a support group for the 16+ people on the Tofersen programme, Eleanor has also launched a campaign – Prescribe Life – to make it available for all people with SOD1, advocating on behalf others with the same condition.
Breathing
Jonathan Shapey, Senior Clinical Lecturer & Honorary Consultant Neurosurgeon, King’s College London provided updates on new techniques to aid speech and breathing. In the US in 2023, he reported, surgeons implanted high performance speech prosthetics into the brain of a main with MND. Using machine learning they were able to capture the brain activity associated with making 125,000 words.
Using this as inspiration, Jonathan is exploring the potential for using a brain/computer interface to support someone living with MND to breathe. Most people with the disease die of respiratory complications and there are a number of challenges related to Non-Invasive Ventilation (NIV).
Jonathan is exploring whether it’s possible to place an electrode on the brain stem to learn the stimulation, use AI to decode the signals and generate the necessary muscle responses for breathing. He acknowledged the ethical and practical issues at play, asking delegates: “what level of preclinical evidence would be required to make it ethical to conduct a clinical trial using a brain/computer interface in human patients. Is it, he added, an acceptable risk to plant an electrode in that region of the brain which could irritate other nerves? And are patients likely to accept the risk and at what stage of the disease would it be helpful.”
Communicating
Richard Cave reported on the incredible speed with which technology, AI in particular, is moving to provide speedy, accurate and manageable communication for people living with MND.
In the seven years since he started working in this field, Richard said, it has advanced hugely. Whereas the process of recording, storing and creating a synthetic approximation of someone’s speech took three months back in 2017, now, as he demonstrated to an astonished audience, it takes only 30 seconds. Enabling people to continue to communicate is hugely important in the fight against one of MND’s worst non-physical symptoms – social isolation.
The platform, 11ElevenLabs is free to use for people with MND, their carers and clinicians working with them. Delegates were even more impressed when Richard played ‘his voice’ reading a pre-written passage in Hindi, to show that the technology is already working in 32 languages.
Generative AI, Richard reported, is providing even greater leaps of progress. A tool called Easy Talk, developed in Australia is able to listen and respond to context.
Dying
Perhaps fittingly, the final presentation of the day focused on the very topical and emotive issue of assisted dying. In two parts, it offered insights into the real-world opinions of people in south London, as shared with St Christopher’s Community Action Researcher Melissa Fielding, and a dispassionate analysis of the legal and ethical issues, from Alex Ruck Keen KC, barrister, writer and educator.
Alex Keen guided delegates through some of the key language, legal principles and different assisted dying regimes around the world. He reminded them also of the fact that providing treatment without consent amounts to an assault. Equally, he said it was important to be clear that there is no legal right to die. People loving with MND would not be among those able to action assisted dying, he confirmed, given the proposal that people must be able to administer the lethal drugs themselves.
Melissa Fielding shared the findings of her research founded on 50 in-depth interviews with people from a range of backgrounds as well as group discussions that provided an opportunity to understand their underlying reasons for holding their views.
St Christopher’s Community Action Researcher Melissa Fielding
Perhaps contrary to the binary debate, as portrayed in some places, Melissa found that many of the participants were empathetic and able to hold several views at once. While likely to support the concept, young people’s support was not so deeply felt as other age groups.
Personal experience of healthcare or caring for a loved one, influenced people’s point of view on assisted dying. Those who’d had poor experiences were more likely to oppose it.
Root and branch reform of the NHS, improved end of life care and wider societal death literacy were among the fundamental changes people want to see, the research found.
What delegates she’d take away from these findings is the clear message that the community needs to be listened to much more keenly on such important issues – an important re-referencing of advocating.
Eating
Sally Thomas, Specialist Neurosciences Dietician, King’s College Hospital, shared news of a new trial – OptiCALS – designed to test the limited evidence that exists that increasing the available energy (or increased calorie consumption) for nerve cells may make them more resistant to the degenerative process in MND. This may lead to a slowing down of disease progression, improving physical function and quality of life for people living with MND.
The intervention has been designed by a team of specialists to help people with MND receive a tailored, high-energy diet at the most appropriate time, in the most effective manner. The OptiCALS nutritional intervention package is available via an online portal which includes videos, dietary information, advice, and interactive tools designed to assist people with MND to optimise their nutrition.
Dr Nikhil Sharma, Consultant Neurologist and founder of BioCorteX, at Queen Square Institute of Neurology, opened many eyes to the importance of what’s in our guts. His focus now is on using a database of five million microbiome samples from across the world to understand the efficacy of drugs, on the basis of the relatively newly found knowledge that the bacteria that lives in each of us reacts in different ways to different drugs. While a drug might be very effective in China, the difference in the microbiome of people living in France, means it might well have little or no effect on them.
Dr Sharma believes this work help accelerate and optimise trials and support the development of more targeted drugs. Riluzole, the only licensed MND medication in the UK, is currently under BioCorteX’s microscope. That is certainly evidence of Hope in Action.
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https://www.stchristophers.org.uk/mnd-conference-hope-in-action-the-a-e-of-mnd/
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