‘My Amazing Brain’ screening reveals more research needed into role families play in stroke recovery

“Your commitment and positivity throughout the [stroke] recovery journey makes a huge difference. The story would have been different without you in the picture.” A comment from one audience member, David, to filmmaker and carer Fiona Lloyd-Davies that summed up the reaction as a whole to the Global Health Film series screening. Sitting (virtually) alongside Fiona, one of the other panel discussion members, Professor Phil Edwards, who himself had suffered a stroke five years ago and lost the use of his left arm went as far to suggest that the documentary should have instead been called ‘My Amazing Wife: The Fiona Effect’.

Professor Edwards from the London School of Health and Tropical Medicine who was also joined by Professor Suresh Kumar Kamalakannan from the Public Health Foundation in India, said the film was “inspirational” and showed that intensive and repetitive therapy could work. ‘My Amazing Brain: Richard’s War’ lays bare that partners of stroke survivors who are an integral part of the recovery process, have an understanding of how they can help at home and can make a difference. But the panel all agreed that not nearly enough research had been carried out into the area and that it wasn’t known just how pivotal family members are. Prof. Kamalakannan also highlighted that in countries like India those caring for stroke survivors were often unaware of how they themselves could help and more support was needed. Due to the expensive and ongoing nature of many stroke rehabilitation therapies, Fiona told the audience that she was informed when Richard was discharged from the neuro-rehabilitaton unit he would receive the standard six sessions of therapy. Knowing that it was not nearly enough she pushed for much more by arguing that Richard was continually getting better and not "taking no for answer”. Comments from the audience were telling of some of the other issues raised in the film. One viewer said she had been working in intensive care for 25 years, had seen injuries akin to Richard’s but had never imagined or known that such an extraordinary recovery would ever be possible. It’s clear that much more feedback on how well patients have recovered needs to be shared with those working in hospitals so that they can understand the importance of their work. Fiona suggested that there was a deficit of joined up thinking on the stroke recovery pathway.

An update was also given on how Richard’s recovery had progressed since filming. Despite coronavirus, Richard has been able to continue with his speech and language therapy remotely and his ability to use and understand language which had previously been none existent has greatly improved. Fiona revealed a touching recent moment when Richard and her were doing an interview for television about his rehabilitation and Richard revealed to Fiona that he had been talking to the bin men, adding “you didn’t know that did you!”.

A short follow up film, including clips of the interview with Richard will be shown on BBC Earth's Facebook page soon.

Watch the full discussion here: