The shuffling and whispers of the conference crowd ceased entirely when Yorkshireman Stephen shared his story. The brain injury survivor recalled the last thing his wife ever said to him before the overdose that killed her. “I just want my old Steph back”, he quoted to a watching audience of delegates.

Even battle-hardened brain injury professionals with years of experience in the field were captivated by his account, which formed part of a video montage to introduce the new Time for Change report.

The All-Party Parliamentary Group for Acquired Brain Injury’s paper is designed to highlight the many challenges facing
brain injury care in the UK and was covered in detail at UKABIF’s 10th annual conference in London.

However tragic, testimonies like Stephen’s provide invaluable support to those trying to push brain injury higher up the national agenda. Patients with first-hand experience of brain injury able to share it in conversations not littered with medical jargon are vital allies for the lobby fighting the corner for neuro- rehab services.

But the cold hard facts of ABI may be equally persuasive to decision makers at Westminster, delegates at the Royal Medical Society were told.

Chris Bryant MP, chair of the ABI APPG, said at the UKABIF event: “If you take an 18-year-old who has been in a road traffic accident and maybe needs three or four people’s support

to be able to clean, wash, feed and dress themselves, and you take them to a place through rehabilitation where they only need one person, then across a lifetime you have saved the taxpayer millions and millions of pounds. So there is a real saving for the whole of society.

“This is not the argument I prefer using. The argument I prefer is, if we can give someone a better quality of life then that’s the moral imperative, not a financial one. But there are people who will respond well to that other argument.”

Bryant, one of several speakers at the event in November, focussed his speech on the ongoing lobbying campaign surrounding the issues and recommendations set out in its APPG report.

“I’m dedicated to this cause because ABI is a hidden epidemic. I’ve campaigned so hard because it impacts on so many government departments.”

He also reiterated the mission of the APPG to unite government departments and drive change for brain injury survivors.

“The campaign is far from over. I feel that it’s only just begun and there are other issues we haven’t even touched yet.”

Also taking to the stage was Colonel Alan Mistlin, chair of the clinical reference group for rehabilitation and disability. He detailed the continual development of specialised neuro-rehab.

Neuro-rehab is crucial in order to maximise recovery after ABI and remains one of the most cost-effective interventions available to the NHS, he said.

It reduces acute hospital stay, provides functional independence and facilitates a return to work. Yet there are large variations in provision and access to services and a lack of neuro-rehab personnel, he warned. “The current services are probably not what we would set up now, but there’s lots of work in progress,” he said.

Colonel Alan Mistlin at the UKABIF event The updated Rehabilitation Prescription (RP) was discussed at the event, by Hannah Farrell, of University Hospitals Birmingham NHS Foundation Trust.

The RP documents the rehabilitation needs of the individual with ABI and identifies how those needs should be addressed longer term. Farrell reminded delegates that the RP should be given to the patient on discharge and a copy sent to their GP to facilitate ongoing rehabilitation.

Farrell said: “The RP is not just a tick box exercise to generate money. It should be used for every patient with rehabilitation needs and a copy sent to their GP; this is a major challenge going forward.”

Meanwhile, the much-debated issue of brain injuries in the prison system was discussed. Brain injury can make offending behaviour more likely, while being an ‘offending type’ can make having a brain injury more likely. Also, having a brain injury can make people far more prone to the effects of alcohol which also increases their probability to offend.

The prevalence of ABI in the offender populous is significantly higher than in the general population. There is clear evidence of the different causality of brain injury between men and women in prison, with females being at greater risk of repeated brain injury from domestic abuse. Dr Ivan Pitman ofvthe Brain Injury Rehabilitation Trust (BIRT), discussed the findings from BIRT’s Brain Injury Linkworker service in a women’s prison which is based on a stepped care model and focusses on identifying brain injury and implementing interventions to support the offender.

On the issue of young people with an ABI, Professor Nathan Hughes, University of Sheffield said: “Recognising brain injury is key to being able to provide the right support in schools, to prevent disengagement, exclusion and possible offending behaviour.”

He explained the issues surrounding the recognition and response to ABI and the discriminatory criminal justice processes. He also emphasised the need to change systems and processes to ensure young people obtain appropriate and timely support, and ultimately prevent their propensity to go on to offend.

“The cornerstone of disability law is that the employer has a duty to make reasonable adjustments for the employee,” said Emma Satyamurti, Leigh Day looking at the challenges of returning to work following a brain injury.

She reviewed examples of ‘reasonable adjustment’ including a change of tasks, location, working hours and different approaches to managing absence and performance behaviour.

Dawn Astle concluded the formal conference programme by telling the story of her father, Jeff Astle, the footballer nicknamed ‘the King’ by fans, who won five caps for England.

Jeff was the first British professional footballer to die from chronic traumatic encephalopathy (CTE), aged just 59.
The impact of sport-related concussion on late dementia, CTE and other chronic neurological conditions is uncertain and further research is needed, she warned.

The Jeff Astle Foundation was established in 2015 to raise awareness of brain injury and to provide support to those affected.

The UKABIF event was sponsored by Cygnet Health Care, Elysium, Irwin Mitchell solicitors, Leigh Day and Sintons Law.

Also at the UKABIF event…

Cheers to a college champion

A physiotherapy manager has been recognised for her groundbreaking work with college students.

Verity Fisher, of the National Star College in Ullenwood near Cheltenham, is this year’s winner of the UKABIF Stephen McAleese Award for Inspiration.

She received her award at UKABIF’s 10th annual conference from the parents of Stephen McAleese, who sustained a brain injury after contracting meningitis when he was 15 and dedicated his life to promoting understanding of brain injury. He passed away in 2010.

Verity said: “I’m really pleased to receive this award. The young people at the college have a wide range of physical disabilities, acquired brain injury and associated learning difficulties, and my work is all about helping them achieve greater independence. I try to ensure that as many opportunities as possible are made available to our students.”

Among Verity’s achievements was the initiation and organisation of a therapeutic and learning ski trip to Andorra for young people.

The project originated as a one-week trip for those with moderate physical disabilities which was then rolled out to also include those with very complex disabilities.

Verity worked closely with the Andorran resort, ski school and airlines, as well as the Andorran ambassador, to ensure that all the young people at the college had the opportunity to learn to ski.

The trip has developed as a key element of the college’s therapeutic and education programme. Her work has been recognised by many organisations, including Ofsted and the Care Quality Commission, during inspections at National Star, and was covered by the BBC breakfast programme.

UKABIF chair Andrew Bateman said: “Verity’s innovation, enthusiasm and determination are a great inspiration to us all. Her excellent work has also been carried through in the form of training packages which, alongside the publicity generated, will have a far wider impact in raising awareness of acquired brain injury.”

The winners of the UKABIF Film Award 2018 were also announced at the recent conference in London. They were Kathryn Cann for the County Durham and Darlington NHS Foundation Trust, Lauren Nicholas for the Royal Hospital for Neuro-disability, Anne Johnston and Jeremiah Humphreys-Piercy.

Whitehall screening

MPs will have the chance to undergo the brain injury screening process that many would like to see implemented in prisons across the UK. The move, announced by MP Chris Bryant

at the UKABIF annual conference, will see ministers at Westminster being given the option to complete the test in January. The initiative, led by the Disabilities Trust and supported by the acquired brain injury APPG, is aimed at raising awareness of the importance of brain injury detection and management in the prison system.

“We hope at least two thirds of MPs will take part,” Bryant said.