More support is needed for families following traumatic brain injury

Back in May, there was a Backbench Business Debate on the provision of services for treatment and rehabilitation for Acquired Brain Injury in the House of Commons. Acquired brain injury was again debated in July in Westminster Hall with more focus on the health-related issues. These debates, motioned by Chris Bryant MP, and supported by the UK Acquired Brain Injury Forum (UKABIF), raise awareness of the challenging and complex needs of those affected by brain injury and that, sadly, we have an inadequate provision of neurorehabilitation in the UK.

As a registered nurse who has worked in acute neurosurgery and examined the effects of Traumatic Brain Injury (TBI) on the family, I have first-hand experience of just how challenging and complex life is following a TBI and how essential specialist neurorehabilitation and support is for patients and families post-injury.

Why it matters

Traumatic Brain Injury is the leading cause of death and disability in those under 40 years of age. If the initial injury is survived, most will have a complex range of physical, psychological and cognitive impairments that they must live with for the rest of their lives. Families are an integral part of recovery following TBI and patients do better when supported by a well-functioning family.

However, families are themselves at risk due to the difficult nature of supporting the care needs of those with brain injury, and also from coming to terms with the changes the injury has caused in all their lives. The recent debates in Parliament captured the difficulties that these families face, with Chris Bryant MP saying: "All too often, however, families have to fight for every single bit of support from the National Health Service." When there is inadequate support and provision of specialist neurorehabilitation, these experiences further compound the stress and suffering associated with brain injury.

What support is currently offered?

When a person has a TBI they are first treated in trauma centres and may receive in-patient rehabilitation following recovery from life-threatening injuries. Once discharged from hospital they may have specialist rehabilitation provided either at home or in specialist care facilities. Unfortunately, some patients find there is no, or severely limited, access to community rehabilitation and others may even be placed in inappropriate settings like nursing homes. Family members are often left desperate and fighting for access to these essential services. Charitable organisations such as Headway, the brain injury association, provide excellent support for people following brain injury but often families are left trying to survive alone not realising what support they all need to maximise the potential outcome following TBI.

Impact on family

My research, and others within this field, shows just how far reaching the impact of brain injury is on the family. Families are traumatised in the acute phase of injury and overtime this can lead to a sense of suffering through accumulated losses, loss of certainty, loss of control, and loss of the anticipated future.

A frequently used metaphor is the ripple effect of brain injury, whereby the injury displaces normal family functioning and the consequences radiate out from the life of the injured person into the lives of all other family members. While we have concentrated on how the injured person changes following brain injury, we don't commonly talk about how TBI changes the uninjured members.

Therefore, this metaphor is a little one dimensional in that it assumes the family is stable prior to injury and that change is in direct response to identified change in the injured person. Our research extended this metaphor through an image of 'rain on water' that recognises families are in a dynamic state whereby all family members are changing as a result of their experiences and need help to make sense of their post-injury lives within the context of head injury.

What's next?

At the end of the parliamentary debate, Chris Bryant MP said: "it is almost cruel to save lives and not give people the quality of life that they deserve" and I support this position. Medical technologies are saving lives well beyond what we ever imagined would be possible. Health and social care has, therefore, a moral imperative to aid these people, and their families, to reach their potential post-injury.

Following on from the debate, it is clear there is a desire to make acquired brain injury a priority for government. Making TBI a priority includes a commitment to sustained long-term funding for both extended in-patient, and community, specialist rehabilitation. This specialist care should be inclusive of whole family approaches, and recognise the individual context of each family post-TBI.