Shining a light on the untold stories of brain injury: A review of the 2023 Ahead Together conference

The keynote speaker, Damian Barr, opened the day with a talk drawing upon his award-winning memoir, Maggie & Me (Bloomsbury, 2013). He focused specifically on his experience of his mother’s brain haemorrhage, which occurred during his primary school years, and about which he had not spoken publicly before. Dr Barr reflected on his experiences during the acute stages of his mother’s illness and period of recuperation, as well as the lasting consequences – in particular fear, loss, and anxiety; but also resilience, connection and joy – felt to the present day. These reflections were shared with enormous warmth, humour, and insight, particularly in relation to having ‘the right’ to talk about his experiences of brain injury in the family. I often think there is as much psychology in good literature as there is in most of the psychology literature, and this talk, indeed this conference series, reinforces that view for me.

Family members speaking about their experiences of brain injury at a public event always have a huge task ahead of them, but the ‘untold stories’ theme made this challenge even greater. Dr Alyson Norman’s task was complicated by her dual expertise as a brain injury researcher and person with lived experience as a family caregiver for her brother after his brain injury. Though Dr Norman has written and spoken about her brother’s life after brain injury publicly in a number of fora, the focus this time on the impact on her own life was more of a departure and told with great candour. Several other family speakers told their stories via conversations with professionals they had worked with closely – RWK Goodman’s Tracy Norris-Evans and Ian Carrier, and neuropsychologist Gavin Newby. The presenters’ stories are of course their own to tell and not mine to summarise, but I would highlight that despite the differences between their experiences – we heard from a mum, a dad, and a wife whose relatives had sustained different types of injury across the lifespan, and whose difficulties varied hugely – there were a number of common themes:

• The stigma associated with some consequences of brain injury in particular, for example, aggression and violence, or inappropriate sexualised behaviour, evidently has particularly acute emotional consequences for the family members and can be particularly difficult to talk about. We have an important role as clinicians to provide a space for sharing these emotions safely.
• The emotional impact on family members due to the day in, day out, experience of caring over many years. This is important because, as professionals, we often see people for short periods of time, and often at a relatively early stage post-injury – the question of how services can best support what we know is a chronic need for the whole system, especially within resource-limited services, remains relatively open, and we need more evidence of effective approaches in order to advocate for better provision.
• The impact of the caring role on life beyond the caring role, particularly over the long term, was also a theme across several talks, including impacts on emotional wellbeing, later relationships, and wider life roles. These are not issues for brain injury services alone but for broader support services and third sector organisations.
• The value of being able – and enabled – to tell one’s own story, however difficult that may be, with appropriate supports in place.

All family members told their stories and reflected on their experiences with great courage. To share such difficult material takes an impressive generosity and within the audience there was a sensitivity to and appreciation for this, which I can only reiterate here.

The presentations from professionals began with Dr Ndidi Boakye (Consultant Clinical Neuropsychologist), who described her use of the Tree of Life approach to working with couples where one partner has a neurological condition, a creative process useful in uncovering narratives within the family system. Nicola Cale illustrated her work as a Case Manager through the theme of the challenge of ‘letting go’ of some of the responsibilities and fears around the caregiving role, and the value of bringing in skilled professionals who can work creatively with people after brain injury to expand horizons beyond what may have been thought possible. Finally, Dr Gaby Parker (Consultant Clinical Neuropsychologist), spoke about ‘trapdoors’ in rehabilitation and the value of identifying ‘blindspots’ in ourselves and our staff teams, to ensure the care we provide is optimally tailored to each family and its unique constellation of features.

A special guest appearance was made by Sir Chris Bryant, Labour MP and Chair of the All-Party Parliamentary Group on Acquired Brain Injury, who has done much to publicise the needs of people with brain injury and the inequalities in care that exist nationally over the past several years. Sir Chris voiced his understanding of and commitment to the family perspective in brain injury rehabilitation and reassured that this will be represented in the forthcoming ABI strategy.

The day was co-chaired by Dr Mark Holloway and Trevor Greenaway, also members of the AT family, both ably drawing out learning points and facilitating valuable discussion. I was particularly touched by the conversational format of several of the family member presentations, which I thought exemplify the care and creativity with which the Ahead Together team approach their events.

The conference included a poster / abstract competition which encouraged the participants to put forward family-focused research / service development / quality improvement projects in the area of brain injury. The prize was awarded to the submission by Miranda Wheeler and Sally Zarwalski of Community Head Injury Service, Aylesbury, Buckinghamshire Healthcare NHS Trust, entitled “Recognising and responding to the support needs of family members in an NHS community neurorehabilitation service”.

The team’s commitment to making lasting change for families with brain injury, and to engender not false hope but reasonable hope, was certainly achieved. I would recommend the next conference, Ahead Together 4, due to take place in 2025, to anyone working in the field of brain injury, or neurological conditions more generally.

Before then, the Ahead Together / RWK Goodman team have a number of exciting initiatives in the pipeline – watch this space or, better yet, drop the team a line on [email protected] to join the Ahead Together mailing list.