This Carers Week we take a pause to acknowledge the incredible efforts and personal sacrifices of unpaid carers around the world, particularly carers of people with brain injury.

People with brain injuries are sometimes the most isolated, experiencing what marriage and family therapist, Pauline Boss, refers to as ambiguous loss, a traumatic and unending grief, a ‘paradox of absence and presence’ where their loved one might be physically present but just the not the same, with probably a lack of insight or awareness that they are just not the same. Helen Bulbeck Co-founder and Director of Services for Brainstrust refers to the ‘great personal cost’ of supporting people who may never be the same.

A new report entitled ‘The Cost to the UK Economy of Acquired Brain Injury’ commissioned by the All-Party Parliamentary Group on Acquired Brain Injury and charity United Kingdom Acquired Brain Injury Forum (UKABIF) has revealed that the hidden cost of brain injury is about £43billion per annum. The total costs include £20bn impact on the NHS and social care, £21.5bn in lost productivity to the economy, £1.9bn in DWP benefits, and £1.5bn in costs to education and the criminal justice system However, no one can quantity the true cost of support, of unpaid hours, emotional toil and silent tears of people who may be silent or silenced by this vicissitude.

That is why this week, the Research Enhancement Fund of Canterbury Christ Church University is funding research in collaboration with Headway Kent to evaluate the social impact of brain injury on people affected by it, including carers and family members. The uniqueness of this small-scale research is that 100% of the funding goes to Headway Kent, the specialist charity that support people with brain injury and their families. It would not only fund interviews but is also a social space and an information leaflet that signposts people to services. This is especially important because of benefit and funding cuts, there have reduced referrals and access to services. This research would help ascertain the importance of co-production and research based social activities for people affected by brain injury.

Using the ‘Making Headway’ play experience as a case study, this research would help ascertain the importance of co-production and research based social activities for people affected by brain injury.  

The NIHR funded play is part of the ‘Heads Together’ project, shown at CCCU in March 2023 with people with ABI and their carers in attendance, support from Canterbury Christ Church University made it a social event. This triangulation approach will capture the essence of the service users viewpoint whilst providing a social space and therapeutic support. The aim is to promote their right of participation and to partner with them in research, acknowledging them as the equal partners and experts in their own lived experience.

Akudo Amadiegwu is a Senior Lecturer in Social Work and researcher on this project.