Impact case study database

Locked-in syndrome is a rare neurological disorder which affects around 1% of people who have a stroke - there are more than 100,000 strokes in the UK each year. There is no treatment or cure, and it is extremely rare for patients to recover any significant motor functions. It causes a complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake but have no ability to produce movements (outside of eye movement) or to speak.

Miranda’s BCMI system has challenged some of the myths and assumptions surrounding severe motor disability and has had a profoundly positive effect upon the mental health and wellbeing of patients, who were able to transcend their physical limitations to create art. It has led to changes in therapeutic practice at the Royal Hospital of Neuro-disability due to increased understanding of the benefits to patients of using this system, and more widely has contributed to public discourse around Locked-in Syndrome, of the opportunities created by the technology for those with it, and for imagining the possibilities of technology beyond that already achieved.

Increased mental health and wellbeing of patients

In 2019 Miranda created a proof of concept version of the BCMI for a care home in London. The custom-made system was tailored to the specific needs of the patient they worked with, and the flexibility of the system ensured that it could be adapted for individual requirements. The system had significantly beneficial impacts on the patient, increasing wellbeing and patient interaction, so Miranda built a personalized BCMI unit that was donated to the patient. The patient uses it on a regular basis, with a carer trained to support this activity. The patient emailed “I would like to thank you for the music system you specially made for me. Your research has been wonderful. It is lovely being able to choose and play music once again. This has improved my quality of life... I would love for other people, like myself, to have access to such a wonderful a piece of equipment” [5.1].

Miranda’s collaboration with the care home helped him to further understand the needs of patients. Although patients valued the technology, it only allowed them to choose from set pieces of music with little autonomy or creativity. They yearned for a system which allowed them to create original music and interact with others. This resulted in Miranda designing enhancements to the BCMI, which enabled four patients at the Royal Hospital of Neuro-disability (RHN) to collectively compose music. This pioneering system meant that the patient could direct a musician in performance, enabling the co-creation of music between patients and musicians, something that they had not previously been able to do. In trials, the RHN reported that the technology empowered the patients and boosted their confidence [5.2]. Crucially though, the unique and ground-breaking opportunity of this technology is that it enables this culturally marginalised and cognitively segregated group of patients to express themselves creatively through co-producing their own music. One music therapist explained: “ When you look at some of the patients we have here, communication internally is all intact, but they are cut out of the rest of the world by virtue of their disabilities. I think it is very important that there is technology that … offers patients that have locked-in syndrome, motor-neuron disease, multiple sclerosis, the ability to be creative. The BCMI bridges the gap that is there because of their inability to move or talk. This is a great means of transcending disability to offer individuals a unique experience of creating music with each other and interacting with skilled musicians to create original compositions.” [5.6]

Activating Memory: A pioneering performance pushing creative practice beyond its conventional boundaries**

In July 2015, the enhanced version of the BCMI was used in its first public performance when four musicians and four patients joined as the Paramusical Ensemble to co-create and perform Miranda’s compositon, Activating Memory, at the RHN. This pioneering performance was a significant moment for those participating. One of the patient-participants, Richard Bennet, who can only communicate via eye movement to select letters from a display, told a BBC News report: “ It was amazing to work with the others” [5.3]. Another patient, Steve Thomas said: “ This is a truly magical experience. It is a chance to play with other severely disabled musicians” [5.4] and: “ It’s more interactive with people actually getting my instructions. It was great to hear the musician play the phrase I selected” [5.5].

Change in public discourse around cultural access and marginalised groups

The preparation for and performance of Activating Memory was captured in a documentary, Paramusical Ensemble, which won Best Documentary at the BioFiction Science Art Film Festival 2019. Through this, the pioneering performance has been screened across the globe [5.6]. To December 2020, the film has been viewed 104,000 times on Vimeo alone.

The publicity around the performance and documentary also led to further performance opportunity, reaching a wide global audience; One of the patient-participants was Rosemary Johnson, a former violinist of the Welsh National Opera (WNO) who suffered a devastating injury in an accident in 1988, robbing her of speech and movement. Although her career was over, she never lost hope that one day she might make music and perform again with the WNO. In March 2017, this dream was realised when the media attention of Miranda’s research inspired a collaboration with Volvo and Grey advertising agency to produce a Sky Atlantic TV documentary about Johnson. Grey London approached Miranda following media attention to produce a film for the series ‘Defiant Pioneers’. The series focuses on ‘people who do things differently and whose relentless pursuit of craft and innovation would change the world’ [5.7]. Miranda worked with Johnson to adapt the system for a performance with an orchestra featuring her as a soloist at Kings Place, London. The first airing of the documentary [5.8] was shown during the advert break of the season finale of TV programme “Game of Thrones” on 27^th August 2017, attracting 12.1 million viewers (global information & measurement company, Nielsen). This has led to greater awareness and understanding of the issues facing patients with locked-in syndrome. Johnson’s performance using Miranda’s BCMI technology contributed to her receiving an MBE for her services to music in December 2017 and was cited on the Royal Family Twitter feed [5.9].

Changes to medical practice regarding patient care

At a therapeutic level, Miranda’s collaboration with the RHN resulted in changes to the hospital’s work-based practice. Resident therapists, nurses and carers found BCMI technology to be a powerful tool for their practice, particularly music therapy, occupational therapy and palliative care. The system raised staff awareness that the patients led a full life before they came to RHN and provided a deeper understanding of the patients’ condition. It led to changes on how staff used the computer room with patients. Previously, they rarely linked eye movement tracking assistive technology with the music making software as it was time consuming and they did not appreciate the positive effects it had on patients. Dr Sophie Duport, Associate Director of Research, RHN said “ Since interacting with your system, they appreciate how much the patients enjoy it and how beneficial it is to their mental health and well-being. Therefore, they have changed their practise to facilitate a therapeutic intervention” [5.2].