The Global Health Film Classics screening of My Amazing Brain: Richard’s War on 12 July, provided a compelling platform to hear from experts about the challenges facing UK’s Rehabilitation services following stroke and what we can learn from Richard’s continued recovery, even now seven years since his brain haemorrhage. Clinician and academic, Professor Diane Playford skilfully chaired the Q&A session following the screening of the
film with speech and language therapist (SLT) Liz Williamson, clinical psychologist Catherine Doogan and me, wearing both hats of filmmaker and carer.
"Very inspiring story, perfectly shows how much is possible with the right medical treatment and rehabilitation process" - Viktoria, Austria
A worldwide audience joined us from locations ranging from Canada to Bangladesh, Hong Kong to Austria and Italy, and was made up of clinicians, therapists, clinical and health care students as well as stroke survivors and filmmakers. It resulted in a rich and dynamic vibe with wide-ranging questions from enquiries into Richard’s recent advances in his recovery, to more general discussions on access to therapy, adapting to on-line services and the key question of how to change the landscape of neuro-rehabilitation in the NHS to ensure that patients with acquired brain injury are given a sufficient dose of therapy over time.
"Very touching and beautiful film." - Itzel, Mexico
"What a fantastic film coupled with strong will and even stronger support system!"
- Vrindha, India
As a filmmaker, the value of these events on virtual platforms is huge. One of my principle aims of making the film was to promote recovery after stroke, which shockingly is still not regarded as an on-going lifelong journey in this country by some clinicians. Nor is there long-term intensive, what’s known as ‘high-dose’ therapies made routinely available to people post-stroke. People viewing the film, from clinicians, therapists to those recovering and their advocates are still incredulous that Richard received therapies for so long on the NHS, because it is rare for someone to get quite so much for so long. The usual ‘dose’ when discharged from hospital is six sessions of physiotherapy, occupational therapy and SLT. In Richard’s case, we were extremely fortunate in that I was able to obtain more for him, resulting in six months of therapies. One of the key reasons for the extension of these therapies was due to Richard’s constant, continuous progression – often in acute contrast to everyone’s expectations.
What really struck me about this Global Health Film discussion was the robust conversations happening about the need to change the rehabilitation landscape in this country. At present there are only 190 rehabilitation consultants in the entire country with 1.2 million stroke survivors. Despite the fact that the WHO regard rehabilitation to be part of a comprehensive healthcare system, the GMC medical student curriculum does not mention rehabilitation.
This is why one of my key goals for this film is to get it shown in every medical school in the UK.
Covid-19 has brought the whole issue of rehabilitation into much sharper focus, in part due to the increasing understanding that the virus affects the brain and other organs as well as the lungs, with extensive clinical rehabilitation needed. This also poses a lot of questions, not least as to whether the already existing, and often minimal neuro-rehabilitation services for people recovering from stroke and brain injuries will be detrimentally affected and further forgotten.
Of course, this is an incredibly difficult time on all levels, but for Richard there has been a surprising and unexpected benefit. When lock-down started, all his therapies had to stop, but then, with the help of Liz Williamson and her team, we decided to try doing SLT remotely.
For someone with cognitive impairments, the prospect of doing something as difficult as SLT using zoom could be so overwhelming that it might be damaging. Especially as when we started, our internet was so poor it was sometimes not even possible to do. However, the long-promised fibre connection became available and not only was it possible, but we were able to increase the sessions to three a week plus homework, meaning Richard was having some form of SLT five days a week. The result has been outstanding. Since March his speech, language and comprehension has improved in the most dramatic way. Richard and I are now able to have conversations, with him even initiating them, something he has never been able to do before. For the first time in seven years he is able to express himself.
I am still regularly contacted by relatives seeking advice as their loved ones embark on their journey of recovery. It is a long, and hopefully never-ending path of improvements, big and small, sustained throughout by hope. As a relative and advocate I’ve felt that without hope for recovery (perhaps beyond reasonable expectations), I would never have been able to sustain the agony of the journey over these past seven years. For me this GHF Classics event was one of those moments of real joy, joy to be with ‘fellow travellers’, joy that there is hope for positive recovery, and a joy to celebrate Richard’s recovery and the inspiration it provides for others, whether professional caregivers, advocates for survivors or survivors themselves.
"What an extraordinary recovery, I became a huge fan of you both. Very emotional and powerful film!" - Tatiane, Brazil
The discussion can be viewed in full here: Link
With thanks to Gerri McHugh, all the team at Global Health Film, Leia Baig, Marina Santis, Kristina Sergeeva