Sir, – The recent media attention regarding people living with acquired brain injury is welcome and overdue (Sylvia Thompson, "Making hidden disabilities more visible", Health, August 30th) .
In research published in 2014 on the experiences of and supports available to people living with acquired brain injury, we found that they often lived very isolated lives, and that community support for them is very limited.
Some described being the “walking wounded” and commented that they felt like they lived “wearing a mask” of normality.
The invisibility of their conditions and poor public awareness of acquired brain injury combined to produce a situation where they lived with very limited social and employment opportunities.
As friends and extended family faded into the distance, they and their immediate family members, if the latter existed, were often left alone to manage and research complex conditions, and weave their way through complex medical jargon and appointments with various medical consultants and specialists as best they could.
Some found acceptance and understanding in services offered by formal support groups, such as those offered by the Headway group. However, having gone through formal support sessions, again there was nothing available to them and they told us that they dreaded the day when the allocated number of sessions available to them would finish.
Our recommendations highlighted the need for ongoing, extended support for people living with acquired brain injury and recognition of acquired brain injury as a long-term condition that requires long-term support.
Funding of existing advocacy and support groups, although limited in their reach, provides dedicated services that do help people to rebuild their lives, develop skills and reconnect socially. – Yours, etc,
JACQUI O’RIORDAN,
CAROLINE
DALTON-O’CONNOR,
School of Applied Social
Studies and School of
Nursing and Midwifery,
University College Cork.