June 2018 Conference: ‘Brain Injury – a Lifelong Journey’

We are all familiar with the term ‘long-term conditions’ and there is a plethora of information, guidance and reports that are easily accessible to help us better understand what this might mean. Much of this information is hugely helpful and provides a strong foundation from which treatment, rehabilitation and support is based. This ABIL Conference aimed at focusing strongly on personal experiences, the impact and effects on the survivor, their loved ones and friends and their lifestyle as well as the ongoing support that is needed for something that simply doesn’t just get better and go away. [download the programme ABIL-Programme-05.06.18-Brain-Injury-A-Lifelong-Journey]

We welcomed Gary Grimshaw who wrote key points from which to base his presentation. Gary cited the process of preparing this had been immensely challenging for him and he had to approach it in small chunks over a long period of time to be able to complete this. Gary talked about the person he was before his injury, describing himself as ‘a confident, well-rounded person with a responsible job in London’ and how after his injury he had ‘returned to work but it was a hopeless exercise as I couldn’t do the multi-tasking as I had done before’. Gary experiences difficulty with memory, fatigue and depression. The difficulty of getting onto some kind of even keel was hugely prevalent and Gary talked about how he has found voluntary work and art to be beneficial as they provide him with some structure and purposeful activities again. However Gary was keen to point out that this is an ongoing struggle and the challenge constant.

Adrian Warner talked about ‘massive personality changes’ he experienced following his injury and how he had studied psychology as a realistic means to understand the damage to his brain and cognition. Adrian focused on ‘Spectatorship’ a state where an individual has lost all self-awareness of their physicality and he described what he referred to as ‘the myriad of barriers and hurdles’ one has to face. He cited the importance of the right environment for rehab and how cognitive stimulation is as crucial as physiotherapy yet in his experience the latter seemed to take precedence. He also talked about how essential it is that professionals really understand brain injury and the vulnerability of the survivor – who needs time, understanding and encouragement in an environment that inspires, stimulates and supports. His presentation ‘Beating Spectatorship; increasing self-awareness after TBI’ can be viewed on YouTube at https://www.youtube.com/watch?v=3pPN4jXceAQ

Looking at the long-term effects, Zoe Leigh a Case Manager and OT from NeuroHealth Case Management Services looked at support post brain injury and the massive challenges of people’s multi-faceted lives including everything from basic activities of daily living, engaging in activities of interest, employment and living as independently as possible. The varied role and expectation of the case manager and the variety of people to work with in supporting the survivor, family and other professionals can be as demanding as it can be rewarding. Zoe cited the relationship between the support workers and the survivor as often being ‘key’ to the progress of the survivor and in supporting the lifestyle they seek. [download her presentation A Time for Activity and Occupation – Zoe Leigh]

Alex Henson, team lead and highly specialist speech and language therapist at Hammersmith and Fulham Community Neuro Rehab Team provided an overview of SNROS (specialist neurological rehabilitation outreach service) This 3 Year Project in which high intensity and highly specialised delivery is provided in the community is in its final year. The team includes Physiotherapy, Occupational Therapy, Speech and Language Therapy, Psychology, Rehabilitation Consultant and Specialist Nurse. Alex referred to a number of factors that have influenced this project and the gains that can be achieved through it. She referred to: the tightening financial envelope and pressure on inpatient beds and the greater relevance of therapy at home; the increased generalisation of therapy gained at home and the ease of involving family; and improved integration with third sector services. It is hoped this will continue, as SNROS shows huge benefits and strong outcomes. [download her presentation Back to Base – Specialist Neurorehabilitation at Home – Alexandra Henson]

Peter Freeman titled his presentation ‘The Voyage Unplanned’ and provided a huge reminder of how life can change in an instant and how much we take things for granted. Peter’s perspective and experience as a parent of a survivor of brain injury (his daughter) was full of passion, honesty and observations but also wit, as he referred to a sub-title of his presentation as ‘How not to spend a bank holiday weekend’. The ‘voyage unplanned’ travelled from the shock of the accident to Peter finding himself in a situation in which he and his wife had no familiarity, the fear of not knowing, the trauma of seeing his daughter in a coma and the emerging difficulties as well as the long road from hospital to rehab to college and beyond. In addition, the effect on all their lives and the changes this has brought about. Peter is hugely involved with UKABIF and the APPG for Acquired Brain Injury, which is something he would probably not have envisaged featuring in his life before the ‘voyage unplanned’.

ABIL would like to say a big thank you to all the presenters who provided a very thought provoking conference.

Tony Hart

Chair of ABIL