Headway East London

Healthwatch Hackney worked with Headway East London to understand the experiences of people with an acquired brain injury.  They interviewed 19 people.

The research found that most participants had limited awareness of available health and social care services and often needed active support to access them. While relationships with GPs and neurologists were generally positive, these professionals were not always effective at signposting to other services. Social services were frequently viewed negatively, particularly in relation to care assessments and securing adequate support packages.

Significant barriers to accessing care included cognitive and communication difficulties, inadequate care packages, lack of specialist support workers, poor coordination between health and social services, and limited transport options. These barriers often resulted in unmet needs, reduced participation in rehabilitation, and increased reliance on family carers, who themselves experienced high levels of burden and stress. 

Participants also reported difficulties managing medication, understanding treatment, and attending appointments, particularly when they lacked advocacy or support. Many required assistance with organising appointments, communicating with professionals, and following treatment plans.

Access to therapies, community activities, and healthy living options was inconsistent, with barriers including cost, transport, lack of awareness, and insufficient support to attend or continue activities. As a result, opportunities for rehabilitation and social inclusion were often limited. 

The report highlights the importance of advocacy and long-term, trusting relationships in enabling people with ABI to access services effectively. Headway East London plays a critical role in providing this support, helping individuals engage with services, maintain independence, and reduce social isolation. 

Key recommendations include improving coordination between health and social care, introducing specialist ABI social workers and case managers, increasing access to advocacy and transport, and ensuring adequate funding for specialist support and community services. The report also emphasises the need for greater recognition of the hidden and long-term impacts of brain injury and the essential role of families and carers. 

Overall, the report concludes that people with acquired brain injury face substantial systemic barriers to accessing appropriate care, and that integrated, specialist, and person-centred support is essential to improve outcomes and quality of life.