Calling for a national strategy to support people with Acquired Brain Injury (ABI)

Every 90 seconds someone in the UK is admitted to hospital with an Acquired Brain Injury (ABI).[1]

Advances in healthcare have meant that we are able to save far more lives of people who have sustained brain injuries, particularly Traumatic Brain Injury. But we are sadly lacking in a holistic care system that provides neurorehabilitation and continues to support and improve quality of life for these people. Once the patient has been discharged from acute care, there is often very little in the way of ongoing support. Charities such as Headway, provide services via regional support groups and branches, and mainly rely on fundraising, which is challenging and falls short of being able to provide the necessary support for so many people.

The effects of brain injury are wide ranging and far reaching. Individuals can experience a range of physical, cognitive and emotional and behavioural effects, some of which are ‘hidden’ disabilities with lifelong consequences. These often impact on relationships and the individual’s ability to engage in their communities in the way they once did.

The knock on effect across society extends to a range of public bodies, including the NHS and education. Early access to neurorehabilitation is vital, but because of a lack of understanding of its role, funding is extremely limited which means access and provision vary widely across the UK. Without neurorehabilitation and the right support systems in place, people with brain injury are more likely to end up back in the care of the NHS, adding to the increasing pressure the service is under.

Within education there is a lack of understanding about ABI and its impact on young people. As a child’s brain continues to develop, the nature of a brain injury will often present in different ways as the child goes through different development stages. An Education, Health and Care Plan (EHCP) is needed to ensure children are getting the educational support they need, yet, according to HCML Clinical Lead for Children's Services Bob Butler, the lack of any joint approach and comprehensive understanding of the subtle cognitive challenges children can present with, means many could slip through the net and won’t receive the support that could change their lives.

It’s estimated that 1.3 million people in the UK are living with the effects of Traumatic Brain Injury (TBI) as a result of road traffic accidents, falls, assaults and other traumatic events. [2]

Yet there is no national strategy to support people living with ABI.

The Acquired Brain Injury Bill seeks to address this.

The Acquired Brain Injury Bill

Chris Bryant, the MP for Rhondda, and Chair of the All-Party Parliamentary Group for Acquired Brain Injury is responsible for tabling the Bill, which calls for the Government to develop a national strategy to ‘meet the needs of persons with acquired brain injury by improving the provision of relevant services.’

This includes guidance and review on prevention, research, diagnosis (particularly in children and young adults), assessment of needs including neurorehabilitation and physiotherapy, as well as training and local service provision.

Sam Shephard, Hospital Liaison and Groups Lead for brain injury charity Headway Sussex says, “I whole-heartedly support this much needed bill. As someone with 25 years of lived experience of having had my own ABI, I know that there has been a consistent lack of appropriate recognition of the hugely complex and diverse needs of people with ABIs by wider public-facing services. This is especially relevant to organisations like the DWP and the Criminal Justice System, as well as (and surprisingly) much of primary care within the NHS.

I know some of these to be truths from my own experience, and in more recent years, being one of the luckier people who are able to return to the workplace post-ABI, I see these experiences being encountered time and time again by other people with ABI. Whether this is in accessing appropriate benefits such as PIP, requesting reasonable adjustments in the workplace or educational setting, or applying for bus passes, life with an ABI is a multi-facetted and puzzling challenge.

As Hospital Liaison and Groups Lead at Headway Sussex, I see many people struggling to solve these puzzles from point of discharge to many years into the future. This process is frequently not navigable by people with cognitive impairment such as ABI and is magnified by it’s often hidden and regularly misunderstood nature.

For these reasons I back the ABI bill and thank Chris Bryant MP for his tireless work to alleviate the burden so many people are carrying following either their own injury, or the injuries of those that they love.”

Fundamentally, the Bill, backed by UKABIF, Headway UK, The Disabilities Trust, The Children’s Trust and the Child Brain Injury Trust, is about improving quality of life for all those affected by Acquired Brain Injury. Which is why HCML stand in support and encourage everyone to make a difference by asking your local MP to support the Bill. A template letter is available on the ABI Bill website. Find your local MP here.

The Acquired Brain Injury Bill will receive its second reading in the House of Commons this week on Friday 3 December.

To find out more visit www.abibill.org.uk and get involved on social media with the hashtag #iBacktheABIBill.

[1] https://www.headway.org.uk/about-brain-injury/further-information/statistics/statistics-resources/

[2] https://www.centreformentalhealth.org.uk/publications/traumatic-brain-injury-and-offending