On Tuesday, 26th March, the Barrow Cadbury Trust and the United Kingdom Acquired Brain Injury Forum published their report ‘Time for Change: Acquired Brain Injury and Young Adults involved in the Criminal Justice System in England’, summarising research carried out by UKABIF into transitions for young adults with acquired brain injuries who are moving to adult services.

UKABIF received a grant from the Barrow Cadbury Trust under the Transition to Adulthood (T2A) programme to review what policies and practices are in place for young adults (aged 17-25 years) which recognise both Acquired Brain Injury (ABI) and maturity.Brain injury is a neuro-disability which is known to be a significant factor affecting maturational development and outcomes for young adults.

Since the former Secretary of State for Justice, Rt Hon Robert Buckland KC MP commissioned a review, there has been increased awareness of the prevalence of neurodiverse conditions and their impact on policy and practice in the criminal justice system (CJS). Yet some conditions, like ADHD and autism, are better known than brain injury.

The project's primary aim was to improve support for young adults with ABI moving to adult justice services. Additional objectives were to:

·      Provide space for greater collaboration between members of the ABI Justice Network to change practice for young adults with ABI

·      Fill gaps in research evidence related to the treatment of young adults with ABI involved in the CJS

·      Further raise awareness of the needs of young adults by promoting training for practitioners and understanding how best to embed it in practice

·      Ensure that learning which is taking place in silos in some parts of the CJS is disseminated across the whole system.

The research part of the project focused on two areas:

Freedom of Information (FOI) requests, which highlighted the limitations of the existing response by the police and liaison and diversion services to young adults with brain injury in terms of awareness of both ABI and maturity.

Establishing evaluation sites for The Disabilities Trust (now Brainkind) ‘Ask, Understand, Adapt’ programme (online training modules on ABI), in four prisons holding young adults.

The project also produced a leaflet for criminal justice agencies working with young adults with brain injury to signpost them to sources of support. The leaflet was co-created with young adults and is available here.

Finally, the project team engaged with NHS England to ensure that guidance for Community Sentence Treatment Requirements and Reconnect included content on ABI and developed a policy levers matrix to illustrate the range of touchpoints within the CJS where there is potential to better support young adults with ABI.

We found that there is significant scope for further work by the T2A Alliance, UKABIF, and other members of the ABI Justice Network to continue promoting a distinct approach to young adults with ABI. While there is some recognition of ABI and awareness is rising, the effect of ABI on the maturity of young adults has yet to be routinely considered in the early stages of the CJS, i.e. in police custody suites and liaison and diversion schemes.

For example, data held in police custody suites and by liaison and diversion services still needs to be more robust to understand the needs of this critical cohort or the extent to which they are met. There are also currently few support pathways specifically for people with ABI who are involved with the justice system, let alone those which are specifically for young adults.

The lead author of the report, Gemma Buckland, shares some key insights into the findings in a feature on the T2A website which you can read here https://t2a.org.uk/2024/03/26/spotlight-on-acquired-brain-injury/.

A major new campaign launched today is calling for an end to the postcode lottery for NHS rehabilitation services that help people recover from the likes of car crashes, cancer or strokes. There is currently no guaranteed access to this vital care and the call is for life-changing NHS rehab services to be made available to everyone in the UK no matter where they live.

The campaign, created by intensive care rehabilitation nurse Kate Tantam and her multi-professional team, celebrates patients’ ‘firsts’ since hopitalisation – the first tentative footsteps or first halting words – monumental milestones for those lucky enough to receive specialist rehabilitation care.

The campaign is supported by more than 20 healthcare charities, royal colleges and professional bodies who are all members of the Community Rehabilitation Alliance, as well as the actor Stephen Fry who needed rehabilitation after breaking his leg, pelvis and several ribs in a fall from a stage at the O2 is also supporting the campaign and presenter Richard Hammond.

Rehabilitation, including Physiotherapy, Occupational Therapy, Speech and language Therapy and Specialist Nutritional Support, plays a vital role in helping people recover after an accident or illness, such as a stroke, cancer or car crash. But shockingly, millions of people don’t have access to NHS rehab services in their area. What’s more, many of these people can’t afford to pay for private rehab services, creating huge economic inequality when it comes to recovery.  When patients don’t have access to rehab, it can slow or halt their recovery, damaging their quality of life and mental health and causing lasting disability, distress and deterioration of health. Quality rehab takes a multidisciplinary team effort, from physiotherapists, nurses, speech and language therapists, support workers, occupational therapists and psychologists, all playing a major role in a patient’s recovery.

The campaign directs people to PetitionForRehab.com, where they can sign a petition calling for rehab to be made available everywhere and for a named rehab lead to be appointed on every hospital trust and board in the UK.

Kate Tantam, ICU rehabilitation nurse and founder of #RehabLegend said: “Rehabilitation gets our patients back to the people and things that they love. Their goals might not seem big – to hold their grandson, to make a cup of tea, to go to the loo on their own, to say ‘I love you’ - but they are mountains to climb if you can’t move your arms or legs or have lost the power of speech.

“Rehabilitation gives people back the lives they have lost. I hope this campaign helps persuade NHS leaders across the UK to provide much needed rehab services.”

The campaign has also been supported by Baroness Ilora Finlay, President of the Chartered Society of Physiotherapy (CSP), and a professor of palliative medicine, who said: “Specialist rehabilitation care is essential to support people to adapt as they grieve for what they have lost – such as the power of speech, the ability to walk, their independence – and it gives them realistic hope of improvement. We must never lose sight of the fact that the person is still there and is of value, not just, say, a ‘car crash victim’ or ‘cancer victim’. “Everyone deserves the right to regain the best life they can, but this can only happen with the right rehabilitation care at the right time and not everyone will get it. Care should not depend on where you live, which is why this campaign for universal access is so vitally important.”

The billboards are live in seven cities throughout the UK and the radio ads are being played nationwide. Some OOH Media has been donated by Jack Arts. Radio airtime was secured by YOU Agency.

Please sign the petition here https://www.petitionforrehab.com/

Kate will be speaking at the South West Acquired Brain Injury Forum meeting in Plymouth on Wednesday 28^th February – please contact info@ukabif.org.uk to sign up or to get more information.

The Lowry in Salford hosted this year’s conference with delegates from across the country attending.

Sir Chris Bryant MP, Chair of the All Party Parliamentary Group for Acquired Brain Injury (ABI) opened the conference as he gave an update on the Government’s Acquired Brain Injury Strategy and offered guidance on how to engage MPs to encourage them to support the Strategy.

The morning saw a focus on ‘Women and Brain Injury’ with discussions on women in sport, domestic violence and how The Care Act (2014) works in supporting women with a brain injury. As always, some of the most powerful talks came from people with lived experience. A panel of three young women talking about their experiences of living with an acquired brain injury captivated the audience with their insights, wit and top tips for supporting young people.

Suicide and brain injury was highlighted in a series of presentations including Liz Twist MP providing a detailed look at the Government’s Suicide Prevention Strategy as well as a session on suicide and self-harm in prisons and the importance of screening for Traumatic Brain Injury (TBI).

The Summit, sponsored by Irwin Mitchell, Cygnet Health Care, Frenkel Topping Group and Leigh Day, was preceded by a wonderful fundraising dinner the evening before where the winners of the annual UKABIF Awards were announced. The Awards, sponsored by Thompsons Solicitors, saw the Stephen McAleese Award for Inspiration go to joint winners. Leon, who suffered a brain injury aged 28 years, was recognised for his work as a mentor at Rehabilitate while Dr Jenna Moffitt and Dr Don Brechin were recognised for their work in research and data showing what further provisions are needed to support people affected by brain injury in the North East.

The Mike Barnes Award for Innovation went to Melo - an AI driven app that is designed to help clinicians better understand challenging behaviours and improve the way data is used to support patients.

The Poster Award went to ‘Life Threads’ - a study aimed at supporting families after traumatic brain injury through visual representation.

Chloe Hayward, Chief Executive of UKABIF, said: “What an incredible Summit that was! Thank you so much to our wonderful line-up of expert speakers for their knowledge, experience and inspiration.

“It is always wonderful to see so many people attending and hearing the conversations and seeing connections made throughout the day. It is always a packed programme and it is vital that we all work together and learn in order for us to strive to provide the best support possible for anyone affected by an Acquired Brain Injury.”

This exciting summit will bring together experts from different areas to explore the best ways to treat, diagnose, and support those affected by brain injury. Speakers will discuss the most current research and provide an exceptional experience.

Get ahead of the curve and take advantage of early bird rates before they're gone!

Overview

The UKABIF Summit was designed to provide valuable insights into the latest research, treatment approaches, and support systems for those affected by brain injury - and this year's summit will be no different.

During the summit, delegates will have the opportunity to explore a wide range of topics, including cutting-edge research on TBI prevention, early intervention strategies, rehabilitation techniques, and advancements in diagnostic tools. Our esteemed speakers will share their expertise and present the most current findings in the field.

With an engaging and dynamic agenda, the UKABIF Summit 2023 promises to deliver a truly exceptional experience. This event is perfect for medical professionals, researchers, caregivers, and anyone interested in staying ahead of the curve when it comes to brain injury research.

Don't miss out on this opportunity to gain valuable knowledge and network with experts in the field.

Speakers and topics covered

For the UKABIF Summit 2023, we have gathered a lineup of renowned experts in the field of brain injury research. These speakers will delve into a wide range of topics, ensuring that attendees gain valuable insights into the latest developments and advancements in brain injury research.

Sir Chris Bryant, MP and Chair of the APPG for ABI, will present on The Acquired Brain Injury Strategy and raising awareness in Parliament; Dr Elisabeth Williams, Senior Lecturer at Swansea University, will present on Sport and Brain Injury; while Professor Mike Barnes will present on the use of Cannabis in Supporting People with Brain Injuries.

These are just a few of the expert speakers and topics covered at the UKABIF Summit 2023. For a full breakdown of the programme; click here.

Prepare to be inspired, informed, and empowered as you engage with the forefront of brain injury research and treatment strategies.

Importance of understanding brain injury

Understanding brain injury is of utmost importance for healthcare professionals, researchers, caregivers, and anyone interested in this field. By staying up-to-date with the latest research, we can improve the diagnosis, treatment, and support for individuals affected by brain injury.

Research helps us uncover new prevention strategies to reduce the risk of brain injuries and implement early intervention strategies that can significantly impact patient outcomes. It provides insights into rehabilitation techniques that maximise recovery and help individuals regain independence. Additionally, advancements in diagnostic tools allow for more accurate and personalised treatment planning.

By attending the UKABIF Summit 2023, you will have the opportunity to delve into the latest research findings and learn from renowned experts in the field. Understanding research will not only empower you to provide the best care and support, but it will also contribute to the overall advancement of knowledge in this critical area.

Don't miss out on this chance to be at the forefront of brain injury research.

Early bird rates and registration information

Take advantage of early bird rates and register now for the UKABIF Summit 2023! This is your opportunity to save on registration fees and secure your spot at this groundbreaking event.

Early bird rates are currently available, but don't wait too long as they won't last forever. By registering early, you'll not only save money, but you'll also guarantee your attendance at sessions led by renowned experts in brain injury research.

To register, simply visit our website and follow the easy online registration process. You'll be asked to provide some basic information and choose the sessions you're most interested in attending. Once you've completed the registration, you'll receive a confirmation email with all the necessary details.

Don't miss out on this opportunity to be a part of the UKABIF Summit 2023. Register now and secure your place at this prestigious event.

We look forward to welcoming you!

We are grateful to Thompsons Solicitors for their support in making these awards possible.

We look forward to celebrating the work of those who are making a difference in the Acquired Brain Injury sector.

What are the UKABIF Awards?

The UKABIF Awards is an annual event that aims to recognise and celebrate individuals, organisations, and initiatives that have made significant contributions to the field of Acquired Brain Injury (ABI). These awards serve as a platform to showcase innovative ideas, raise awareness, and promote a better understanding of ABI.

The UKABIF Awards are open to a wide range of participants, including healthcare professionals, researchers, educators, and individuals affected by ABI. They provide an opportunity for these individuals and organisations to share their expertise, experiences, and success stories, ultimately contributing to the collective knowledge and understanding of ABI.

By participating in the UKABIF Awards, individuals and organisations have the chance to gain recognition and support for their work. The awards also help to raise awareness about ABI, as the winners' achievements are widely publicised and shared within the healthcare community and beyond. This increased visibility creates opportunities for collaboration and further advancement in the field.

The UKABIF Awards play a crucial role in driving progress and improvement in the field of ABI. They inspire innovation, encourage excellence, and bring attention to the importance of better understanding and support for individuals with brain injuries.

So, whether you're a researcher, advocate, or healthcare professional, don't miss out on this opportunity to be part of the UKABIF Awards 2023 and make a difference in the world of ABI.

What are the different award categories and criteria for each one?

he UKABIF Awards offer a range of categories, each highlighting different aspects of Acquired Brain Injury (ABI) and recognising outstanding contributions in those areas.

This year, we are thrilled to present three exciting awards.

The Mike Barnes Award for Innovation 2023

This award acknowledges an innovative project or concept in the management of Acquired Brain Injury. We are seeking entries that demonstrate originality, viability, feasibility, and desirability. The winner of this award will receive support from the National Institute for Health Research (NIHR) to advance their project, taking their innovation to new heights.

The Stephen McAleese Award for Inspiration

This prestigious award celebrates individuals who have made inspirational contributions in the field of Acquired Brain Injury. We are looking for those who have gone above and beyond, inspiring others and making a real difference in the lives of individuals with ABI.

The UKABIF Poster Prize

If you have a research project that focuses on brain injury, we encourage you to enter the UKABIF Poster Award. We accept posters that have been presented at previous events. The winner of this award will receive £100, free UKABIF membership for one year, and complimentary admission to the 2024 conference.

These awards provide a unique platform to showcase and honour excellence in the field of ABI. Whether you are a trailblazer in innovation, an inspirational figure, or a dedicated researcher, we invite you to apply for the UKABIF Awards 2023 and be a part of our mission to improve the lives of individuals with Acquired Brain Injury.

What impact do the UKABIF Awards have on raising awareness and education about Acquired Brain Injury?

The UKABIF Awards play a crucial role in raising awareness and promoting education about Acquired Brain Injury (ABI).

By recognising and celebrating outstanding contributions in the field, these awards bring attention to the importance of better understanding and support for individuals with brain injuries.

One of the key impacts of the UKABIF Awards is the increased visibility and publicity that winners and their achievements receive. As the winners' accomplishments are widely publicised within the healthcare community and beyond, the awards create opportunities for collaboration and further advancement in the field of ABI. This increased visibility also helps to raise awareness among the general public about ABI, its challenges, and the ongoing efforts to improve outcomes for those affected.

Furthermore, the UKABIF Awards provide a platform for individuals and organisations to share their expertise, experiences, and success stories. By doing so, they contribute to the collective knowledge and understanding of ABI.

The awards encourage innovation and excellence by showcasing innovative ideas, technologies, and programs that have shown promising results in the rehabilitation and support of individuals with ABI. Overall, the impact of the UKABIF Awards on raising awareness and education about Acquired Brain Injury is significant. They inspire individuals and organisations to strive for excellence, advocate for better support, and contribute to the ongoing efforts to improve outcomes and quality of life for individuals with ABI.

Apply or nominate someone for the UKABIF Awards 2023.

Dr Emily Bennett, N-ABLES Chair and Consultant Clinical Neuropsychologist at Nottingham University Hospitals NHS Trust said: “Concussion is not just limited to sports injuries, this mild brain injury can happen in the playground, park or in the home. A return-to-learning has to take priority over a return-to-sport. N-ABLES recommends this easy-to-use guide for use in all schools to help raise awareness of the effects of concussion and also to improve the understanding of its impact on learning.”

Dr Gemma Costello, N-ABLES Steering Committee member and Educational Psychologist in Paediatric Neuropsychology said: “It’s important that parents understand how to monitor their child during the concussion recovery stage, and for teachers to be aware of the symptoms and the individual’s possible needs in the classroom”.

Page 1 of the guidance provides an overview of concussion, the symptoms, red flags, advice on when a student can RTS and resume normal activities, examples of support and further information. Page 2 is a step-by-step RTS guidance. N-ABLES wants to disseminate this resource as widely as possible across the UK, to all target audiences involved in the education and support of children and young adults with ABI, their parents/carers.

Read more on the guidance

The Medical Research Council announced on 28th June 2023 that they are to join forces with the National Institute for Health and Care Research (NIHR), the Ministry of Defence and Alzheimer’s Research UK to jointly fund the establishment of TBI-Reporter.

Led by the University of Cambridge, TBI-Reporter will bring together experts from across the UK to lead research into TBI, encompassing concussion, and including all ages from infancy to older people.

As part of the £9.5 million research platform, UKABIF will lead the Patient and Public Involvement and Engagement (PPIE) aspect of the initiative.

This will involve establishing a PPIE Panel, identifying contributors, holding workshops and carrying out outreach work.

The PPIE Panel will be co-chaired by UKABIF Trustee,  James Piercy and UKABIF Executive Director, Chloe Hayward.

Chloe Hayward said: “We are delighted to be part of this exciting and potentially life-changing research platform. We know that there is still so much to do to improve the diagnosis and treatment of a brain injury.

“UKABIF has a broad network linked to many individuals, patient groups and third sector organisations. We will work to ensure the voices of patients, families and carers are heard and used to shape the research. Their experiences are crucial to the whole initiative.”

It is expected that the PPIE Panel will have up to 12 members, including people with lived experience of a TBI of different severities and contexts, including hard to reach and vulnerable groups.

TBI-Reporter will collaborate with Health Data Research UK and will co-ordinate research data collection and clinical studies.

 

Helen Whately, Minister for Care was accompanied by Sir Chris Bryant and a representative from the Department for Health and Social Care on a visit to the Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCNPR) on 7th June 2023.

The ethos of CCPNR is that physical and mental healthcare are treated together in a community setting. This  includes the involvement of schools resulting in improved outcomes for patients. This is not only preferable to the patient and their families but is also much more cost effective and efficient.

Whilst there the Minister and Sir Chris were able to meet a number families and key professionals from the team.

Jo from Cambridgeshire told the MPs that her son Josh has been under the care of CCPNR since a car accident last November, when he was 17. After the accident, Josh wanted to get back to school and be with his friends.

Educational psychologist Dr Gemma Costello  - a key member of the N-ABLES team advocated for the family, working with the school to ensure Josh would have the right support, even after his physical injuries had healed. He is now doing A-levels.

CCPNR is run by Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) but tightly linked to Addenbrooke’s Hospital (CUH) and provides a pathway from acute care into the community. It was set up in 2009, due to Child and Adolescent Mental Health Services (CAMHS) being overwhelmed by young people who were struggling despite sustaining their injuries over a decade before.

The MPs were visiting as part of their work on an Acquired Brain Injury (ABI) strategy, something Chris Bryant has successfully campaigned for last year. 

The partners working with UKABIF over the coming 12 months are Irwin Mitchell Solicitors, Leigh Day, Cygnet Healthcare and Frenkel Topping Group.

These organisations are key to supporting the lobbying work of UKABIF and will meet regularly to assist the the activities connected to the Time for Change programme of work.

The Time for Change campaign was implemented through the All-Party Parliamentary Group for Acquired Brain Injury (ABI) to improve post-acute care for people with an ABI.

Chloe Hayward, UKABIF’s Executive Director said, ‘Our Strategic Partnership Programme enables trusted organisations, with shared goals, to work with us over the coming 12 months.

“UKABIF's, strength lies in collaborative working and bringing people together. Through that partnership approach we work closely with government and Parliament, academics, charities, medical, legal and social care professionals to ensure that our demands for change are evidence-based, logical and practical as a first step to policy change.”

Tom MacGuinness, from Leigh Day, said: “UKABIF continue to do hugely important work for those living with brain injury. Their work on the ABI Strategy over the past 12 months has really put brain injury at the forefront of health policy and Leigh Day are delighted to be able to partner with them again this coming year.!”

Lynne Carrick-Leary from Irwin Mitchell, said: “We are proud and delighted to continue to support and work in partnership as strategic partner with UKABIF.  Both organisations have the same enthusiasm and synergy to continue the need for fully funded rehabilitation for those living with an ABI.  UKABIF has made massive strides in pushing through the national ABI strategy and we are excited that hopefully very soon, this will become a reality.  We look forward to supporting UKABIF and all those they support in pushing the boundaries in the ABI arena.”

Laura Finlay, Cygnet’s Director of Marketing said, “I’m delighted that we can continue our partnership with UKABIF as one of their strategic partners. Cygnet's and UKABIF's ethos and values are very much aligned to support those affected with acquired brain injuries. I’m looking forward to more collaboration working, striving for specialised services and support for those with brain injuries.”

Iain Cherry, of Frenkel Topping Group, said: “It’s a privilege to work so closely with UKABIF to support the vital work they do for the community of people living with brain injury. Like Frenkel Topping Group, who are focused on life after life-changing events, UKABIF is using its platform to raise awareness and take action in areas where brain injury has a significant correlation to outcomes, for example in sport, learning and education, domestic abuse and homelessness. In our area of work, collaboration is key and we are looking forward to supporting UKABIF in its drive for change.”

Recently, UKABIF attended a Parliamentary reception hosted by Chris Bryant MP where people with an ABI were able to meet their MPs to discuss what improvements are needed to improve the lives of anyone affected by an ABI. UKABIF is playing a key part in shaping the Government’s newly established ABI Strategy, working closely with Chris Bryant MP is the Chair of the All-Party Parliamentary Group on ABI and was the driving force behind the Government implementing a nationwide ABI Strategy.

The partners working with UKABIF over the coming 12 months are Irwin Mitchell Solicitors, Leigh Day, Cygnet Group and Frenkel Topping Group.

These organisations will meet with UKABIF regularly to assist the activities connected to the Time for Change programme of work.

The Time for Change campaign was implemented through the All-Party Parliamentary Group for Acquired Brain Injury (ABI) to improve post-acute care for people with an ABI.

Chloe Hayward, UKABIF’s Executive Director said: "Our Strategic Partnership Programme enables trusted organisations, with shared goals, to work with us over the coming 12 months.

“UKABIF’s strength lies in collaborative working and bringing people together. Through this partnership approach we work closely with government and Parliament, academics, charities, medical, legal and social care professionals to ensure that our demands for change are evidence-based, logical and practical as a first step to policy change.”

Tom MacGuinness, from Leigh Day, said: “UKABIF continue to do hugely important work for those living with brain injury. Their work on the ABI Strategy over the past 12 months has really put brain injury at the forefront of health policy and Leigh Day are delighted to be able to partner with them again this coming year. Keep up the great work!”

Lynne Carrick-Leary from Irwin Mitchell, said: “We are proud and delighted to continue to support and work in partnership as strategic partner with UKABIF. Both organisations have the same enthusiasm and synergy to continue the need for fully funded rehabilitation for those living with an ABI. UKABIF has made massive strides in pushing through the national ABI strategy and we are excited that hopefully very soon, this will become a reality. We look forward to supporting UKABIF and all those they support in pushing the boundaries in the ABI arena.”

Laura Finlay, Cygnet’s Director of Marketing said, “I’m delighted that we can continue our partnership with UKABIF as one of their strategic partners. Cygnet's and UKABIF's ethos and values are very much aligned to support those affected with acquired brain injuries. I’m looking forward to more collaboration working, striving for specialised services and support for those with brain injuries.”

Iain Cherry, of Frenkel Topping, said: “It’s a privilege to work so closely with UKABIF to support the vital work they do for the community of people living with brain injury. Like Frenkel Topping Group, who are focused on life after life-changing events, UKABIF is using its platform to raise awareness and take action in areas where brain injury has a significant correlation to outcomes, for example in sport, learning and education, domestic abuse and homelessness. In our area of work, collaboration is key and we are looking forward to supporting UKABIF in its drive for change.”

Recently, UKABIF supported a Parliamentary reception hosted by Chris Bryant MP where people were able to meet their MPs to discuss the improvements needed to improve the lives of anyone affected by an ABI.

UKABIF provides the secretariat for the All-Party Parliamentary Group on ABI and is working with the Government to develop the ABI Strategy.

For more information, please contact UKABIF.

 

People with lived experience of brain injury, professionals and charities attended an Acquired Brain Injury reception in Parliament hosted by Chris Bryant MP on 10th May 2023. 

Around 60 MPs from across the House attended to hear first hand from people living with an acquired brain injury, just what improvements need to be made. It was a wonderful opportunity for organisations to network and for many constituents living with a brain injury to lobby their MP to call for change.

Chris Bryant, Chair of the All-Party Parliamentary Group on ABI, gave an update on the progress of the Government-wide ABI Strategy which is expected to be published this year.

Addressing the reception, Chris Bryant said: “To see so many people come along is amazing. I have been involved in this for a long time and we want to put together a single strategy for the whole of Government on Acquired Brain Injury. In doing so, there is the recognition that there is an issue to deal with as a whole Government.

“We have 1.4 million people in the UK, if not more, living with a brain injury and we want anyone, regardless of age or postcode, to be able to live the best life possible.”

Chloe Hayward, Executive Director at UKABIF, said: “A huge thank you to everyone who made the journey to attend the reception. The response is testament to the will to improve the lives of people living with an ABI. Your voices were heard and we will continue to press for change.”

New guidelines for recognising and managing concussion in grassroots sports has been published by the Government.

Aimed at the general public and those engaging with sport on a non-professional level, ‘If In Doubt, Sit Them Out’ is guidance with a very clear message that if an individual is suspected of having concussion, they must be immediately removed from play.

Chris Bryant MP, Chair of the All Party Parliamentary Group on Acquired Brain Injury (ABI), and the driving force behind the implementation of the Government’s ABI Strategy, said: “At long last we’re beginning to take this issue seriously. Sport is good for you but a brain injury can completely change your life. I hope every sporting organisation will take these new protocols to heart.”

UKABIF Executive Director Chloe Hayward added: “We welcome this guidance for grassroot sports clubs as it is very much needed to improve understanding and awareness of concussion. It is positive to see the Government taking the first step towards addressing the concerns raised in the DCMS Select Committee Inquiry into concussion in sport in July 2021.”

The guidance, which is aimed at players, coaches, teachers, volunteers, parents and carers, says:

·       No-one should return to competition, training or Physical Education (PE) lessons within 24 hours of a suspected concussion.

·       Anyone suspected of sustaining a concussion should be assessed by an appropriate onsite Healthcare Professional or by contacting the NHS by calling 111 within 24 hours of the injury.

While the guidance is welcomed there are concerns about the implementation of the protocols. Dr Michael Grey, UKABIF Trustee said: “There are still gaps in the guidelines and there are real worries that many healthcare providers are ill equipped to recognise concussion and have little knowledge of managing concussion."

Through the ABI Strategy groups, we will continue to press the Government on fully recognising the dangers of concussion in sports at all levels from grassroots to elite. It is vital that the Government engages with all relevant stakeholders to ensure the best outcomes for anyone with an acquired brain injury.

The guidance, which has been developed in partnership with medical professionals and sports governing bodies, can be found by clicking here.

The All Party Parliamentary Group (APPG) on Acquired Brain Injury has been reinstated following its annual general meeting.

APPG’s are informal, cross-party groups formed by MPs and Members of the House of Lords looking at a particular issue, policy area or country.

Following the AGM on 28th February, UKABIF will continue to act as secretariat for the APPG which was established in 2017 to raise awareness of Acquired Brain Injury.

Sir Chris Bryant MP, who campaigned successfully to see the Government agree to implement a nationwide ABI strategy, will continue to Chair the APPG. Other members include:

●      Sir John Hayes

●      Liz Twist

●      Carolyn Harris

●      Christina Rees

●      Andy McDonald

●      Martyn Day

●      Tonia Antoniazzi

●      Baroness Brady

●      Baroness Morris of Yardley

●      Baroness Grey-Thompson

Chloe Hayward, Executive Director at UKABIF, said: “The APPG on ABI plays a vital role in raising awareness of ABI and striving to improve the lives of those affected by an ABI. We are pleased to continue to work closely with the APPG as secretariat and look forward to making further strides and improvements over the coming year.

“Chris Bryant and the other members are committed to working together to see better services and outcomes for people with an ABI and their families. There have already been positive changes but there is a real commitment to see more done across all policy areas.”

A consortium of brain injury charities and a leading University’s School of Psychology is launching a UK-wide survey to understand educators’ perceptions and understanding of childhood acquired brain injury (ABI).

The research is being carried out by the School of Psychology at Swansea University, who are part of the United Kingdom Acquired Brain Injury Forum’s (UKABIF) Special Interest Group for Wales as well as The Child Brain Injury Trust, and UKABIF’s National ABI Education and Learning Syndicate (NABLES).

Open to anyone aged over 18 years and working in an educational role, the survey aims

to gather information around the challenges children face in their learning following an acquired brain injury. The study also aims to identify what, if any, training or learning that teachers or teaching assistants may have completed around acquired brain injury.

Chloe Hayward, Executive Director at UKABIF, said: “This is the first nation-wide survey of schools to have focused on acquired brain injury. The scale of this survey will provide us with a better understanding of how childhood brain injury can affect a child’s experience of education. It is so important that people take part even if they feel they do not come across children with brain injuries in their work. I would encourage anyone working in the educational sphere to add their voice by completing the survey.”

The survey will take around 15 minutes to complete and can be filled in online. If at any time, during or after, a participant wishes to withdraw their data, they can do so by emailing ABIWales@UKABIF.org.org within two weeks providing their unique identifier generated during the survey.

To find out more about the survey, go to www.ukabif.org.uk/schoolsurvey. Anyone who completes the survey can enter a prize draw for a place on one of the Child Brain Injury Trust’s Understanding Childhood Acquired Brain Injury online workshops. The survey is accessible at https://swanseachhs.eu.qualtrics.com/jfe/form/SV_7X7jYSLIoY98PHM

The UK Acquired Brain Injury Forum (UKABIF) and the Criminal Justice Acquired Brain Injury Interest Group (CJABIIG) welcomes the Ministry of Justice’s update on its action plan in response to the recommendations of the 2021 review of evidence on Neurodiversity in the Criminal Justice System published today (25th January 2023).

Research shows that brain injury in men, women and adolescents within the criminal justice system is up to five times higher than the general population, making this the most prevalent cause of neurodisabiltiy within the system. People with brain injury face challenges in understanding and navigating the criminal justice system and finding a path back out of it.

We are pleased to see the proliferation of practical activities across the criminal justice system linked to the Action Plan, including guidance on best practice and avenues for support, and the newly created specialist positions to drive change in the prison service. We hope this will provide the basis for significant cultural change that recognises how people with brain injuries can get swept into the criminal justice system due to a lack of effective prior support, and better responds to those that do, through awareness raising, screening, assessment, and evidence-informed, effective responses. We welcome the Ministry of Justice’s ongoing efforts to better understand the complexities of people’s needs across the range of neurodisabilities and to coordinate steps to meet them.

UKABIF’s Time for Change report made a series of proposals on criminal justice, which we wish to see addressed by the government both through this Action Plan and in the forthcoming wider cross-government ABI strategy:

·       Criminal justice procedures, practices and processes should be reformed to take into account the needs of individuals with Acquired Brain Injury

·       Training and information about Acquired Brain Injury is required across all services including the police, court, probation and prison services

·       Brain injury screening for children, young people and adults is required on entry to the criminal justice system and, if identified, an assessment of the effects, deficits, severity and impact is required with the appropriate interventions planned and implemented by a trained team.

Chloe Hayward, UKABIF’s Executive Director said: “We are really pleased to see the progress that the government and criminal justice agencies are taking to ensure that neurodiversity is addressed with the seriousness and commitment that people with an acquired brain injury deserve. The evidence base for change continues to strengthen, as published by ABI Justice Network members and others, and we are delighted that our ongoing advocacy is taking effect. We look forward to seeing the outcomes of the actions being taken to start to improve the lives of those affected by brain injury.”

Professor Nathan Hughes, Chair of CJABIIG and Professor of Adolescent Health and Justice at the University of Sheffield, said: “The effects of brain injury, which typically include poorer memory and impulsivity, make it harder to navigate criminal justice processes, including contact with the police, probation services and prisons, to engage well with them and to get appropriate support. Research has shown how practices of criminal justice agencies can be adapted to be effective for people with ABI and help them to understand and better manage their behaviour; however, such practices are not commonplace. We are pleased to be working closely with the government as it implements its action plan and considers what further steps can be taken as part of its commitment to a cross-government strategic approach”.

You can read a full version of the updates here and an easy read version here.

Sir Chris Bryant, MP and Sir John Hayes, MP are to host an Acquired Brain Injury Reception in Parliament on Wednesday 10th May 2023.  MPs are being invited to attend the event where they will be able to meet constituents, hear more about the ABI Strategy and join the All-Party Parliamentary Group for Acquired Brain Injury.

The event will take place in the Jubilee Room from 1-3.30pm and will provide people who have a lived experience of acquired brain injury, professionals working in the field and voluntary organisations the opportunity to come together to raise awareness and support for the Acquired Brain Injury Strategy.

If you would like to invite your MP to meet you at this event you may wish to use our template letter.  Just download the letter and complete your details. You can find your MP and their email address here.

PLEASE NOTE THIS EVENT WAS PREVIOUSLY PLANNED FOR 1ST FEBRUARY BUT HAS BEEN RESCHEDULED DUE TO WIDESPREAD STRIKE ACTION ON THIS DAY

Chris Bryant has been awarded a knighthood for his work with brain injury and melanoma charities as well as the Magnitsky sanctions and phone hacking as stated in the New Year’s honours list released tonight.

For the past five years Chris has worked closely with UKABIF and other charities and organisations in the brain injury community to ensure there is increased awareness of the condition in parliament.

Chris agreed to Chair the All-Party Parliamentary Group for acquired brain injury in 2017 and a year later hosted an event to publish the APPG’s Report entitled Acquired Brain Injury and Neurorehabilitation: Time for Change. The report focussed on a number of areas and outlined key recommendations for change. Since then, UKABIF has developed a series of working parties aiming to bring the recommendations to fruition.

Chris has been consistent and persistent in his drive to improve access to neurorehabilitation as well as highlighting the need for improved access to training and information in a number of professions. He has met with numerous Ministers and officials, hosted debates and round tables and asked questions in parliament on a range of issues.

Last year Chris developed a Private Members Bill which resulted in the Government agreeing to develop a strategy for acquired brain injury. The strategy seeks to involve a broad range of government departments reflecting the complexity and breadth of issues which face those who have suffered from a brain injury and their families.

Speaking to Chris Bryant today he said, ‘I am amazed. Many others who work in brain injury deserve this far more than I do but it will definitely spur me on to get a national brain injury strategy in place this year’

Chloe Hayward, UKABIF’s Executive Director said, ‘On behalf of everyone who has suffered from a brain injury their families and carers, those working professionally as clinicians, academics, case managers, lawyers and in social care we would like to congratulate Chris on this honour. It is so well deserved - we could not ask for a better advocate in parliament to help us raise these important issues. We are looking forward to seeing the publication of the strategy in 2023 and are working closely with the Public and Patient Voice Representative Group to ensure this piece of work is as widely informed as possible.

If you would like to congratulate Chris please consider tweeting and copy in @RhonddaBryant and @UKABIF.

On Wednesday 7th December UKABIF convened a Parliamentary Roundtable at the Houses of Parliament chaired by Chris Bryant, MP. The event aimed to given children and young people, parents and carers, educators and clinicians the chance to talk about their experiences and enable this information to guide the government’s ABI strategy.

Five young people and their families attended to share their first-hand experiences of returning to education after suffering a brain injury. They discussed what was helpful and difficult, and how they felt the education system could be improved to better meet their needs. The children and young people’s brain injuries were caused by Encephalitis, head injury following road traffic accidents, skateboarding accidents and strokes.

Many discussion points were raised, including the importance of consistent awareness training for teaching staff, funding, EHCP plans and access to rehabilitation. A number of actions were agreed to be taken forward for further discussion. The meeting was also attended by a representative from the Department for Health and Social Care and the Department for Education as well as Baroness Morris of Yardley who served a Secretary of State for Education and Skills from 2001-2 and Tonia Antoniazzi, MP for Gower.

After the round table, the young people and professionals went on to take part in two focus groups to discuss their experiences in more detail with the Department for Health and Social Care.

The young people commented that they felt the was a cathartic experience to share their stories in a forum where they felt it would make a positive change and will now form a regulr group to feed into the work of the National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES).

• lead to clearer pathways for people with an impairment or disability
• produce clear guidance on supported self-management and goal setting
• drive cost-savings by facilitating early supported discharge from hospitals and preventing avoidable re-admission.
• ensure care delivery within people’s own homes and communities wherever possible.
  

The standards were compiled by an expert panel from the Community Rehabilitation Alliance, and they set our seven recommendations. Each recommendation outlines what is expected of those working towards the delivery of rehabilitation services.

You can download a full version of the standards here or a summary version here. If you would like more information about how the audit tools and an interactive breakdown of the recommendations please see https://www.csp.org.uk/professional-clinical/improvement-innovation/community-rehabilitation-recovery/important-reading/standards

UKABIF are proud to endorse the standards and are an active member of the Community Rehabilitation Alliance.

The 2022 UKABIF awards, celebrating people’s work and creativity in the field of acquired brain injury, attracted a fantastic number of entries. The awards, sponsored by Elysium Neurological, cover innovation, inspiration, film making, lifelong achievement and poster design. The winners were announced at the UKABIF Time For Change Summit in Manchester on Monday, 7 November.

The Mike Barnes Award for Innovation recognises and celebrates innovative projects and concepts in the management of acquired brain injury. This year’s winner is Krysalis Consultancy for their digital health platform and vocational rehabilitation service solution – Neuro Logical. Neuro Logical is a neuro-OT digital health platform that delivers a vocational rehabilitation solution to managing acquired brain injuries in the workplace. Krysalis was founded by clinical director Jo Throp in 2006. She leads a nationwide team of specialist neurological occupational therapists who have been providing community based neuro rehabilitation services for more than 16 years.

Neuro Logical uses Krysalis’ specialist expertise to identify and remove the barriers of complex neurological conditions that would otherwise limit potential and opportunity. It helps individuals and the workplace recognise what is possible.

It works by recording patient experiences and perceptions of self, creating a ‘real-world’ profile of needs, fostering engagement and motivation via an app. This then allows the occupational therapist to create the best fit environment, roles and occupations for a patient.

The Stephen McAleese Award for Inspiration celebrates an individual who has gone above and beyond in the field of acquired brain injury and this year’s winner truly is Premier League standard inspiring.

In 2012, 15-year-old football mad Charlie Fogarty suffered a severe brain injury after being hit by a car.  He spent 11 days in intensive care at Birmingham Children’s Hospital before being moved to a neurosurgical ward and being placed in an induced coma. Doctors said it was unlikely he would be able to walk or talk again and would probably never return to education.

Yet Charlie proved them all wrong. After leaving hospital four months after his accident, Charlie was transferred to The Children’s Trust – the UK’s leading charity for children with a brain injury and nominator for this Award. Charlie was a resident at the Charity’s specialist rehabilitation centre in Surrey and after two months he spoke again for the first time and just six months after the accident he took his first steps. Ten months later Charlie was well enough to return home.

Before the accident Charlie had just finished a four-year contract at Birmingham City’s Academy and was trialling for Milton Keynes Dons. Playing football again was Charlie’s biggest motivation and just 16 months after the accident he had put on his football boots and stepped onto the pitch for the West Midlands Centre of Excellence team.

The Film Award is a wonderful opportunity to tell stories, share experiences and help people better understand living with an acquired brain injury. This year’s winner is a film entitled The Untold Story of Brain Injury: Voices from Survivors. The film was created by Jess Mountfield whose best friend has a brain injury. It was produced by Flo Layer, Clare Roberts and Jenny Clarke of SameYou.

They wanted to invite everyone to hear and understand the lived experiences of brain injury from the survivors themselves in order to find out what has helped them and what is needed to help more people.

A special Lifelong Achievement Award was presented this year to recognise the work of a dedicated advocate for people with an acquired brain injury.

David Ramsbotham has been a vocal and effective Parliamentarian for the rights of vulnerable people, particularly when they have had an Acquired Brain injury. He saw the need to care for and support people with an ABI from his time as a General in the UK Army, and then, as Chief Inspector of Prisons.

For ten years he then chaired the Criminal Justice and Acquired Brain Injury Group, which resulted in prison system reforms regrading ABI that is world leading - with screening and support becoming accepted as required from a rehabilitation and rights perspective.

The Poster Award looks for designs which are capable of communicating a project to a non-specialist audience. This year this category attracted an unprecedented number of entries for people to vote on. The winner was Kerry Rose Watts for her poster depicting 'A retrospective analysis of referrals for neuropsychology input in a hyper-acute neurorehabilitation service'.

Chloe Hayward, Executive Director of UKABIF, said: “As always, it was a highlight of our Summit to present our annual awards and we are grateful to Elysium for their sponsorship. They are one of the ways we can recognise and celebrate the wonderful work of unsung heroes across the country. It is so important that we highlight the innovation, creativity and determination of people of all ages, across all sectors striving to improve the lives of people with an acquired brain injury.

"Congratulations to all the winners!"

The Lowry Hotel in Manchester was the venue for this year’s conference which was also streamed live to ensure as many people as possible could attend.

Presentations included an update on the Government’s Acquired Brain Injury Strategy from Chris Bryant MP who secured the Strategy and Eleanor Parry, Head of Long-Term Conditions at the Department for Health and Social Care and Lead for the Strategy. Chris Bryant's commitment to the Strategy was evident as always. "People ask me why I am always banging on about this topic," he said. "It's a passion for me and it is about giving people back a quality of life."

Other topics for discussion included legal issues such as deputyships, brain injury rehabilitation in secure care and learning the lessons from Safeguarding Adults Reviews into the deaths of people with an acquired brain injury.

Powerful personal stories were heard from Jordan Ball who suffered an acquired brain injury after a motorcycle accident and his dad David who has supported his son since the accident. They moved the packed audience with their story and experiences of life with an acquired brain injury.

The Summit, sponsored by Irwin Mitchell, Cygnet Health Care and Leigh Day, also included the announcements of the winners of the annual UKABIF Awards, sponsored by Elysium Neurological.

Chloe Hayward, Chief Executive of UKABIF, said: “The Summit is always a fantastic day and a wonderful opportunity to hear from a great line-up of experts in the field of acquired brain injury. The wide range of topics means we cover issues which are of interest to people across all sectors.

“As well as the packed Lowry Hotel venue, we were delighted that we streamed the conference live once again to ensure as many people as possible could hear from the speakers, ask questions and feel part of the day."

“We want to learn from other countries and their policies so that we can make a national difference for the education of children with brain injury” said Dr Emily Bennett, N-ABLES Chair at the Roundtable Discussion that took place at the 2022 Joint Brain Injury Conference in New York last week. The session entitled ‘Supporting Best Practice When Children Return to School after ABI: Resources and Guidance from Around the World’ involved discussants Prof Vicki Anderson (Australia), Dr Gemma Costello (UK) and Melissa McCart (USA).

The discussants outlined the background to Return to School (RTS) in their countries and acknowledged the differences around the world, with huge efforts clearly being made to improve education policies but with varied success. A group discussion then addressed four key questions: What is the consensus on the essential ingredients for a successful Return to Education, what are the levers that support policy change, what research has been used to influence policy and what is missing and who needs to be around the table?

Feedback from the group discussion identified the importance of collaboration, communication between healthcare providers, school personnel and families, and the requirement for Acquired Brain Injury (ABI) education and training for all stakeholders. There is a wide range of excellent resources that have been produced in several countries which could be maximised. The children with brain injury require flexibility within the education system throughout their academic life, with a system that will adapt to their needs especially at key time points such as the transition from primary to secondary school. Influencing education policy at a high level is key to being able to ‘nationalise’ a consistent strategy for managing the education of children with brain injury. From a research perspective more longitudinal data is required.

“The group discussion highlighted that the challenges and barriers are global which is concerning” said Emily. “It’s important to address the problems but unfortunately the majority of people who are supporting these children in education tend to know the least about their needs; ABI education and training is crucial”.

Emily summarised the groups’ intentions going forwards. “Continued collaboration is key; working with other countries will clearly give leverage for everyone. We have an international community that wants to improve education for children with brain injury. These children require a flexible system that is child-centred and a key gaol going forwards is to raise awareness amongst all stakeholders. Knowledge and resources can be shared and although longitudinal research data is hard to collect it may be easier on an international basis. Overall an international position paper could be a starting point to begin to drive best practice for these children”.

Our thanks to The Lovel Foundation, CL Medilaw, Enable Law, Irwin Mitchell LLP, JMW Solicitors LLP and Bold Burdon Kemp LLP who supported funding of this event.

The National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES) is hosting a roundtable at the International Paediatric Brain Injury Symposium (IPBIS) in New York on Thursday, 22nd September. The event aims to gather information and knowledge about education policy for children and young people with Acquired Brain Injury in those countries where it is already established, with the aim to share it globally. 

Dr Emily Bennett, Chair of the N-ABLES Steering Group will be chairing the roundtable entitled ‘Supporting Best Practice When Children Return to School after ABI: Guidance and Influencing Policy Around the World’.  Emily will be joined by Dr Gemma Costello, from the N-ABLES Steering Group, Professor Vicki Anderson of Murdoch Children's Research Institute, Australia, and Dr Melissa McCart who is based at the University of Oregon, USA.

Emily and Gemma will also participate in the pre-conference session Perspectives About Paediatric Acquired Brain Injury and its Treatment: An Integrated Systems of Care Approach on Wednesday 21^st September and will present a poster entitled Time for Change in the United Kingdom: Returning to Education Post Acquired Brain Injury.

More information about IPBIS is available in their newsletter which includes an article about N-ABLES. https://www.internationalbrain.org/uploads/IPBIS-Newsletter-Volume-1-Issue-3.pdf

N-ABLES publication ‘ABI Return – Children and Young People with Acquired Brain Injury – guiding their return to education’ is now part of the IPBIS Toolbox 2022 https://ipbis.org/toolbox. The toolbox ‘Guidance for the post-discharge rehabilitation of children, adolescents and young adults with acquired brain injury’ is produced by the IPBIS together with The Eden Dora Trust for Children with Encephalitis and contains summaries of a wide range of tools and programmes for professionals who work with children, adolescents, and young adults, with mild to severe ABI, and their families and carers. 

N-ABLES would like to thank The Lovel Foundation, CL Medilaw, Enable Law, Irwin Mitchell, JMW Solicitors LLP and Bolt Burdon Kemp LLP whose support has enabled the N-ABLES team to participate in this event.

Image shows Emily and Gemma on their way to NYC  - they were given a free upgrade on their flight!

Gemma Buckland, Policy Adviser for the Criminal Justice Acquired Brain Injury Group and Project Manager for UKABIF’s Barrow Cadbury Project and Karene Taylor, Researcher for the Barrow Cadbury Project presented a poster entitled ‘Understanding of acquired brain injury in police custody suites’ at The Howard League’s Conference on 13th and 14th September.

The poster highlighted that few forces explicitly look for historic acquired brain injury in their assessments and most only have training in first aid brain injury and broader training is focused on other neurodiverse conditions such as ADHD or autism.

The event -  entitled Crime, Justice and the Human Condition: Beyond the cris(es) – reframing and reimagining justice, took place at Keeble College, Oxford University and aimed to provide an opportunity to reimagine how the penal system should work.

Gemma Buckland said, ‘UKABIF is seeking to better understand what processes are in place to support young adults with an ABI in the early stages of the criminal justice system. Police, nurses, and liaison and diversion teams working in custody suites have an important role to play in identifying the need for that support so that it has a better chance of happening.’

We are grateful to The Barrow Cadbury Trust for supporting this research project. If you would like to find out more about the Criminal Justice Acquired Brain Injury Group please get in touch.

Research Call: The Impact of COVID-19 pandemic on parents/carers of family members with severe disabilities.

We know that the COVID-19 pandemic has had a disproportionate impact on families with severe disabilities and want to understand the effect of their experiences during this time. The researchers will use the learning gained from their experiences to create a programme that will help parents/carers cope with the impact of the pandemic. UKABIF are promoting this research & seeking carers to voluntarily participate in a focus group to gain views on this topic.

If you are interested in taking part please contact Trisha trisha.forbes@qub.ac.uk who will answer any questions you have and will arrange a time for the focus group to take place. The focus group will have between 6-8 parents/carers who will collectively discuss their experiences. The focus group should last around one hour and will be held via an online platform.

This work is being undertaken by a team of researchers from across the UK and Ireland including Queen’s University Belfast, The University of Glasgow, Trinity College Dublin, University of Sheffield and The University of South Wales.

#research #carers #families #braininjury