Delegates at this year’s Motor Neurone Disease Annual Conference, left with a comprehensive update on the latest technological innovations, a better understanding of the need to listen more to their patients’ wishes and, most strikingly, a sense of hope.
That hope was provided by Dr Jemeen Sreedharan, Wellcome Trust Senior Research Fellow and Honorary Consultant Neurologist at King’s College London, and conference co-host. Jemeen gave an update on clinical trials and said giant strides had been made in this field in the three year, COVID-19-induced, gap since the last conference.
He told the more than 100 delegates, from across disciplines in palliative care and neurological services, that he was recently the first British doctor to tell a patient that he may not die of MND. This patient has been one of 108 participants in a trial of Tofersen a gene therapy that is injected into the spinal fluid. Jemeen explained that the patient will not get better but maynot deteriorate either. “It has stopped the disease in him and that is a win,” he added.
This was just one of a number of trials currently in progress in the UK, Jemeen said. That includes University of Edinburgh’s MND-SMART programme. Unlike typical trials that test a single treatment, this tests more than one at a time. The added bonus of this approach is that more people will receive an active treatment, reducing the number who receive the placebo. To help researchers, Jemeen alerted delegates to the MND Biobank at King’s, encouraging them to help grow this tissue bank to include samples from at least 2,000 participants.
Clear, transparent communication, and a greater emphasis on patient and carer wishes were the overarching messages from presentations on PEG feeding and tracheostomy.
Dr Colin Quinn, Associate Professor of Clinical Neurology, University of Pennsylvania, shared the results of his comprehensive review of PEG feeding. He highlighted overweighting of the impact of weight stabilisation and underweighting of patient’s enjoyment of eating.
“Patient feelings aren’t built into these models. This leaves the guidelines blind to patient needs and places an over-reliance on survival, failing to recognise that this is in fact a palliative issue,” Quinn said.
Yes, patients should be told about the impact on mortality, but there should also be a discussion about quality of life, he added.
Dr Georgios Kaltsakas, Consultant in Respiratory Medicine, Lane Fox Respiratory Service, and Shauna Sheridan, Physiotherapist, Guy’s and St Thomas’ NHS Foundation Trust provided an update on the theoretical and practical case for and against tracheostomy ventilation.
Georgios’s review of all the major studies of tracheostomy revealed that people who have the procedure live for about 30 months, have no deterioration in quality of life and, according to the largest study, conducted in Japan, may show improvement.
Shauna stressed that there is not enough quality data and that patients deserve more information on which to make a decision about whether to have the procedure. At the very least, she said there should be resources like leaflets outlining the pros and cons.
This was a point picked up on by the last speaker of the day, David Setters. David, of We are Patients United2endMND, who was diagnosed ten years ago, said: “Currently, there is an information vacuum. We need a proper discussion about tracheostomy using facts and figures. Our long-term goal should be that it is included in the NICE guidelines. The message isn’t that everyone must have a tracheostomy, but that everyone should be able to have an open and transparent discussion now.”
Ensuring people with MND have a voice and can communicate their wishes, was the theme for speech and language therapist, Richard Cave, of Royal Hospital for Neuro-Disability. Richard is also part of the MND Association’s NextGen Voice programme, collaborating with tech giants like Google, Microsoft and BT and stressed how important it is for them to engage with patients in developing new tech.
He added “They have the technology which can add disproportionate value to people’s lives. But we have to know what works. That’s what makes co-design and co-production invaluable. So we get people in to test and talk about these initiatives at the earliest possible opportunity.”
Richard highlighted the voice banking app I Will Always Be Me which allows people to make a synthetic approximation of their voice easily, in less than half an hour. He also demonstrated Google’s automated speech recognition app which transcribed close to perfectly the faltering speech of a patient. He showed a third development, Look to Speak, a mobile phone app that can be used as a substitute for Eye Gaze in circumstances when that kit isn’t available.
Acknowledging the impact the loss of control caused by MND can have, and finding ways to mitigate against it, was a theme emphasised by both Dr Emma Hall, Consultant in Palliative Medicine at St Christopher’s and Professor Matthew Hotopf, Consultant Psychiatrist at King’s.
Emma said that not all the solutions are to be found in pharmacological interventions and that engaging colleagues from across the multi-disciplinary team can help meet patients’ needs.
“If you can establish what matters most to a person and their family then you can start to tailor the care and support you provide them,” she said.
Matthew said: “A meaningful life can be found, despite the cruelness of the disease. Continuity of care, and the family and social environment are really important. Continuity of care is the biggest active ingredient, it’s what patients and carers value most. That and providing understanding and empathy.”
Summing up the day, Dr Cathy Ellis, Consultant Neurologist, King’s College London, co-chair of the conference said that health professionals caring for people with MND need to better understand that an individualised approach to patient care is required.
“Quality of life looks different for everyone, and we have to get onto that. Having patients involved in events like this speaks so much louder than anything I can say.” Zaltika Ahmed, a social worker at Princess Alice Hospice, reflected the feelings of many delegates when she said: “Sometimes you can feel a sense of helplessness with patients with MND. Having been at the conference, I’m going to go back to work with the knowledge that there is hope of a cure and that the technological innovations are moving very fast.”