ABI STRATEGY

Countdown to the ABI Strategy - what’s next for the UK’s brain injury approach?

As the Acquired Brain Injury (ABI) Strategy is formalising, neuro-rehab organisations share the changes they’d like to see from what is hoped to be a landmark government intervention. Last December the UK government announced plans to step up its support for people living with brain injury and level disparities in care provision through its first ABI Strategy. The news followed an extensive campaign led by Chris Bryant MP, and a subsequent consultation process saw brain injury organisations, professionals and leaders from across the country input their ideas and concerns.

ABI is an umbrella term for traumatic and non-traumatic brain injury, so it already includes traumatic brain injury and capsulitis hydrocephalus, brain tumour meningitis, brain infections, surgery and many more.

With this period now closed, the brain injury community awaits the publishing of the strategy by the Department of Health and Social Care – while it is set to be released in ‘early 2023’, no official date has been set. In the meantime, neuro-rehab professionals have shared their views on what they hope will be included. The strategy is much needed, with brain injury a leading cause of death and disability in the UK and an estimated 1.3 million living with an ABI. Its economic impact, meanwhile, is around £15bn per year. While long overdue, some caution that the strategy could be “too broad”, given the range of conditions ABI covers. “It does have the potential to make significant difference for children, young people and adults, but I have some concerns around it,” says Gerard Anderson, head of brain injury at the Child Brain Injury Trust (CBIT). “ABI is an umbrella term for traumatic and non-traumatic brain injury, so it already includes traumatic brain injury and capsulitis hydrocephalus, brain tumour meningitis, brain infections, surgery and many more. “To then include degenerative, progressive, and long-term conditions will expand the remit to more conditions and groups than is manageable. This means that if [the strategy] is too broad, then it limits the impact that it can have.” Vicki Gilman, clinical specialist neurophysiotherapist and managing director at Social Return Case Management, says that the uniqueness of the brain injuries means that a strategy that would fix every single person is elusive. “There will inevitably be limitations, but we have to start somewhere,” she says. “We haven’t had this level of acknowledgment around brain injury before and a strategy like this has definitely been something needed for a very long time.” Natalie Mackenzie, director and cognitive rehabilitation therapist at the Brain Injury Support Services (BIS), believes the strategy is a great starting point. “There is always going to be more that can be done, but the strategy is a good place to start,” she says. “It’s really important that people are getting the right rehab at the right time and I think the strategy should ensure that the right level of specialist support is provided at the right time to minimise delays. “We can see big differences between the individuals who have received the right rehab support from the outset, versus those who haven’t, so offering that much-needed support earlier on should be a priority.” Access to rehab services can have wider implications. John Davis, a consulting principal lawyer specialising in serious injuries at Slater and Gordon law firm, underlines the fact that many brain injuries cause personality changes, behavioural changes, as well as mental

health changes that affect everybody in the patient’s entire family. “The ripple effects of a brain injury are enormous and relationship breakdown is common – not just in romantic relationships but also between parents and children,” he explains. “If people have access to early rehabilitation the likelihood of adverse impacts upon relationships will be lessened and the effects of their behavioural problems will be mitigated.” Research into the effects of brain injury on other family members has shown that relationships are put under enormous strain and relatives are likely to experience high levels of anxiety and depression. As head of brain injury at CBIT, Anderson believes access to mental health support is an important issue the government strategy should cover. “We see that often children, young people and their families don’t get the right support, both physically and psychologically to understand their ABI,” he says. “Across the UK, many families are refused access to child and adolescent mental health services, as the poor psychological health of a child is directly caused by the injury to the brain and not as a result of prolonged or poor mental health. “If children are not given the right rehabilitation they will experience longterm impacts as adults. For effective

Better awareness would lead not only to an increase in recognition of problems being associated with brain injury, but also to potentially better workforce numbers.

rehabilitation after ABI, families need to be educated and supported through community rehab teams in a smart and accessible way.” Rehab’s “postcode lottery” has been repeatedly highlighted in surveys where six out of ten people with neurological conditions had problems accessing the services and treatment they needed. Lesley Pope, chair of the Independent Neurorehabilitation Providers Alliance (INPA), says that services need to be equitable across the country. “Currently access to good neurorehabilitation is very much dependent on where you live and whether your commissioning body is educated about the benefits of it. “There is often a huge battle to secure a placement and funding for much-needed neurorehabilitation and this can take many months during which time the person with ABI is left without the attention they need,” Pope continues. “Commissioning bodies clearly need more in-depth knowledge and understanding of ABI.” The UK Acquired Brain Injury Forum (UKABIF), one of the main brain injury organisations that supported Chris Bryant’s campaign, also hopes that the strategy will address equitable access to specialist neuro-rehab services for all those living with an acquired brain injury, whatever stage of their journey. “We would like to see a programme of training and awareness amongst educators to break the cycle of young people without support and to reduce potential access to the justice system,” says Chloe Hayward, executive director of UKABIF. “Additionally, we’d like to see a widely publicised concussion strategy and a focus on the availability of neurorehabilitation for children and young people.” Pope says that raising awareness of acquired brain injury is key to improve patients’ lives as well as the neuro-rehab workforce capacity. “Neurorehabiltation starts with highly skilled, specialist staff. Without them, quality of treatment will be severely impacted. “Better awareness would lead not only to an increase in recognition of problems being associated with brain injury, but also to potentially better workforce numbers.”