The current teacher training curriculum and SENCO training rarely includes acquired brain injury (ABI), despite covering other less-prevalent conditions like hearing impairments. Unlike these conditions, which have specialist advisory teachers within local authorities, there is no dedicated support system for students with acquired brain injuries.

The former Education Secretary, Baroness (Estelle) Morris, who is Vice Chair of the APPG on Acquired Brain Injury, said:

“I welcome the SEND proposals in the Government’s White Paper. It gives us a chance to bring about significant change for the tens of thousands of children across the country who desperately need better support in their schools or colleges. For too long the needs of those children with an acquired brain injury haven’t been addressed and this is a chance to remedy that. 

Educational Authorities need to develop comprehensive brain injury training for teachers, while the DfE should evaluate the establishment of specialist advisory services for brain injury support and ensure that there is far better integration of brain injury awareness into teacher and SENCO training programmes.”

Children and young people with brain injuries are at higher risk of poor outcomes throughout their lifetimes, including:

• overrepresentation in exclusions and alternative provision

• overrepresentation in the criminal justice system

• less likely to progress to future study or work

• more likely to receive welfare benefits 

• more likely to become homeless

Despite this, there is no consistent national measurement of data relating to children and young people with ABI, and ABI is not included as a category on the SEN census. There is no mandatory training for teachers or SENCOs on ABI, and the current SEND system is unable to respond with the urgency or flexibility required to sudden, acquired needs like ABI, leading to long delays in pupils returning to school or accessing appropriate support within school. 

UKABIF welcome the new SEND reforms proposals and plan to input into the recently launched Government consultation on SEND.

Noting to the launch of the consultation, UKABIF:

• Calls for the new national SEND training programme to include dedicated training on children and young people with ABI, and for the new ‘Experts at Hand’ service to include professionals with expertise in ABI in every local area
  
  

• Welcomes the intention to make Targeted support available without an EHCP, to tackle the barriers to timely support for children and young people returning to education following an ABI
  
  

• Supports the principle of Individual Support Plans, recognising the potential to improve recognition and monitoring of needs and access to support after ABI
  
  

• Backs the integration of SEND outreach into Best Start Family Hubs, providing the opportunity to identify and support children with an early ABI before they start school, and ensure the support they require can be put in place from the outset
  
  

• Calls for ABI to be included as a category on the SEN census in England. This would allow for more accurate reporting of those requiring additional educational provision, ensuring SENCOS and local services are aware of any hidden or unmet needs. 

Chloe Hayward, Executive Director of UKABIF, said:

“Schools play a critical role in rehabilitation for children and young people with acquired brain injury, and under the current system far too many have struggled to access the support they need to return to education. These proposals have the potential to bring about a meaningful, positive change, but they must be properly funded across every area of the UK to tackle the current postcode lottery of provision for children and young people with brain injuries.”

Jo Mitchinson, a teacher in Hertfordshire, whose daughter experienced a traumatic brain injury, has presented in Parliament at a roundtable organised by the APPG on Acquired Brain Injury. She said: 

“There is a huge burden on parents and teachers having to advocate within the system, rather than the system already having necessary information and support structures in place. My daughter has made a physical recovery & has even represented GB in Cyclocross. However, she experienced real emotional and psychological difficulties at school because of the impact of her injury. Often my daughter was brought to me while I was teaching another class of 30 children because she couldn’t cope in her own class. This lack of systemic support was a huge challenge for both of us.

Dr Emily Bennett, a Consultant Clinical Psychologist and Paediatric Neuropsychologist at Nottingham Children’s Hospital, who chairs the National Acquired Brain Injury In Learning And Education Syndicate (N-ABLES) said: 

“We welcome the emphasis within the White Paper on belonging. This is so important to children, and particularly to those with an ABI, who are often trying to adjust to a ‘new normal’. However, for these children and young people to truly belong, we believe ABI, and its impact, must be better identified, monitored and supported within schools, rather than remaining a hidden disability, as is often the case at present. The Government’s SEND proposals bring hope in this regard, and NABLES will continue to advocate for CYP with an ABI in schools to ensure the proposed changes make a real difference in the lives of these vulnerable children.”

• Letter from minister says action plan will be published by Spring 2026
• MPs and charity UK Acquired Brain Injury Forum highlight £43bn annual cost of brain injuries, and calls for ‘Right to Rehab’

A Health minister has revealed that the Government will publish an action plan on brain injury in 2026, after years of campaigning by charities and MPs.

In a letter to the Chair of the APPG on Acquired Brain Injury, Ashley Dalton MP, the Minister for Public Health and Prevention wrote that “publication in early 2026” is “realistic”. A debate on a comprehensive acquired brain injury action plan is scheduled to take place in Parliament on Thursday 4 December 2025.

Brain injury is the leading cause of disability and death for people aged 0-40 in the UK, with an estimated hospital admission rate of one person with a brain injury every 90 seconds. The previous Government committed to publish a strategy on Acquired Brain Injury in 2021, but it was never published.

A report from earlier this year, Right to Rehab, commissioned by the APPG and the charity UKABIF, urged the Government to invest in specialist neuro-rehabilitation to save in long term societal costs.

Acquired brain injury (including trauma, stroke and tumours) costs the UK an estimated £43bn a year—1.5% of GDP—through healthcare, social care, lost productivity and wider public services. The report argued that brain injury should be treated on a par with cancer and dementia, with a statutory Right to Rehab in every region, a national strategy, and better data to end the postcode lottery in care. The report highlights evidence of a 16:1 return on investment—£43,000 generating £680,000 savings per patient.

The Minister’s letter says: “The Right to Rehab report is front and centre in our thinking as we explore the feasibility and financial viability of a range of potential actions currently under consideration, including through the ten-year health plan. I know in particular how important better community rehabilitation is to people who have experienced an ABI.”

There are around 350,000 admissions to hospitals in the UK of people with an acquired brain injury and up to 60% of prisoners have experienced a traumatic brain injury .    

Sir John Hayes MP, Chair of the APPG, who in his youth experienced a brain injury, said:

“Brain injury doesn’t just change lives — it drives huge costs across society. If we want to tackle addiction, mental health crises and violence, we must start with the root cause: brain injury. It is time that people are given a right to specialist rehab close to home, and in doing so, we can save money while transforming lives.”

Chloe Hayward, Executive Director of UKABIF, said: “This is very welcome news. Rehab isn’t a cost — it’s an investment. It cuts NHS and social care spending, boosts employment, and helps individuals and families.It transforms lives and strengthens communities — the benefits ripple out to everyone.”

Dr Alyson Norman , a psychology academic at the University of Plymouth, lost her brother Dave after a lifetime of untreated brain injuries led to addiction, homelessness and eventually suicide. A review revealed “mild” injuries from childhood — including a road accident at three — that were never followed up.

“When I learned what was in his records, I went numb,” she says. “I’d always blamed our background. Despite my expertise, I had been flying blind.”

Her own research into 600 serious case reviews found that nearly a third may involve brain injury, often linked to violence or road accidents. Yet support is patchy, and those affected can seem outwardly fine — even though they are three times more likely to take their own lives.

“Specialist community neurorehabilitation could have picked up the issues that led to his downward spiral,” Alyson says.

References

1. On 2 December 2021 the government committed to publishing an acquired brain injury strategy. Acquired brain injury call for evidence - GOV.UK
2. A debate on a comprehensive acquired brain injury action plan is scheduled to take place in Westminster Hall on Thursday 4 December 2025. The debate was scheduled by the Backbench Business Committee and will be led by Sir John Hayes MP. Comprehensive acquired brain Injury action plan - House of Commons Library
3. Link to APPG / UKABIF report Hidden toll of brain injury costs economy £43 billion a year - United Kingdom Acquired Brain Injury Forum
4. Acquired brain injury is the leading cause of death and disability for people aged under 40 in the UK Traumatic Brain Injury - an overview | ScienceDirect Topics
5. There are around 350,000 admissions to hospitals in the UK of people with an acquired brain injury. https://www.headway.org.uk/about-brain-injury/further-information/statistics/
6. Up to 60% of prisoners have experienced a traumatic brain injury. https://www.psych.ox.ac.uk/news/up-to-60-per-cent-of-prisoners-have-head-injuries-as-experts-warn-brain-damage-may-fuel-crime

There is a postcode lottery in neuro-rehab commissioning - A review of NHS services in the East of England by academics at Loughborough and Essex Universities found that rehabilitation in the region was “variable, inequitable and under-resourced”.
https://www.researchgate.net/publication/384928434_Navigating_Rehabilitation_Inequalities_An_Analysis_of_Rehabilitation_Provision_over_the_East_of_England

On Thursday 4^th December a Westminster Hall Debate took place in parliament on the ‘Potential merits of a comprehensive acquired brain injury action plan’ . MPs taking part included Sir John Hayes, MP for South Holland and the Deepings (Con), James Frith MP for Bury North (Lab), Jonathan Brash, MP for Hartlepool (Lab), Wera Hobhouse, MP for Bath (Lib Dem), Wendy Chamberlain, MP for North East Fife (Lib Dem), Liz Twist, MP for Blaydon (Lab), Charlotte Cane, MP for Ely and East Cambridgeshire (Lib Dem), Apsana Begum, MP for Poplar and Limehouse (Lab), Alison Bennett, MP for Mid Sussex and Spokesperson for Care and Carers (Lib Dem), Caroline Johnson, MP for Sleaford and North Hykeham and Shadow Minister for Health and Social Care (Con) and Ashley Dalton, Minister for Public Health and Prevention (Lab).

Those that took part highlighted numerous suggestions of what the ABI Action Plan should include, citing examples from their own constituents.

Sir John Hayes (Chair of the APPG) gave a detailed and informative speech and stated “the (ABI Action) plan needs to include a focus on better community rehabilitation and on how that will help to achieve real change for people with ABI.”

He was followed by Jonathan Brash who noted that “brain injuries change lives, but failure to act destroys them."

Wera Hobhouse mentioned the Lancet commission on dementia prevention, intervention and care which identifies traumatic brain injury as a modifiable risk factor, which alone is estimated to contribute to around 3% of global dementia cases.

Long standing member of the APPG for ABI and advocate for people with acquired brain injuries, Liz Twist discussed issues for children with brain injuries and the need for the integration of mental health and neurological care.

Charlotte Cane discussed the difference specialist rehab services, such as that offered by Brainkind, can make and the need for family support. She stated that “a clearer, fairer process is needed to ensure that people get the rehab support they need, and then the appropriate housing and care support as they move back into the community.”

Apsana Begum cited the experience of her constituents, who lost their son to suicide in prison following numerous failings to provide support. In addition to easier access to serious case reviews, she requested that duties should be placed on national bodies, Government services and social services to collect and analyse data, and to share it with each other.

Alison Bennett highlighted that although “the (brain) injury itself may often be sudden, the struggle that follows is not. For better or worse, it is shaped by the systems meant to support recovery.”

Responding, Ashley Dalton stated the action plan would be published in the next 6 months and would set out clear priorities across health, social care, education, justice and beyond in a bid to move towards rehabilitation and long-term support being better embedded throughout public services.

She stated that rehabilitation is the cornerstone of recovery and independence and that the department are thinking through carefully what the action plan will say about community rehabilitation.

She closed by confirming the action plan would deliver a joined-up approach across health, social care, education, justice and beyond, ensuring that rehabilitation and long-term support are no longer fragmented.

You can watch the debate in full by clicking here

You can also see a full transcript of the debate on Hansard here. 

The All-Party Parliamentary Group for Acquired Brain Injury will next meet on Tuesday 9^th December 2025 when the Department for Health and Social Care, who are leading the work on the ABI Action Plan, will update MPs and Peers on progress with the plan. We will write to give you a full update after the meeting.

Thank you to everyone who contacted their MP – many of whom were mentioned in the debate. MPs have extremely high work loads and demands on their time, do keep in touch with them about future opportunities if they did not respond or were unable to take part this time.

The National ABI in Education and Learning Syndicate (N-ABLES) has won a prestigious award in recognition for their dedication, compassion and ongoing work supporting educational professionals to gain a better understanding and awareness of Acquired Brain Injury (ABI).

The team is comprised of Dr Emily Bennett, Dr Gemma Costello, Chloe Hayward, Susie Nolan, Petrina Sill, Lisa Turan, Dr Sharon Buckland, Charlotte Giblin, Joanna Woodhouse, Professor Nathan Hughes and Baroness Morris of Yardley.

The N-ABLES team were awarded winners in the Above and Beyond category of the Neuro Rehab Times 2025 Awards at an online ceremony which took place on 19th November 2025.

Dr Emily Bennett, Chair of N-ABLES said, “We are so delighted to win this award, particularly when we were shortlisted along side such brilliant teams and professionals doing incredible work.

We would particularly like to recognise the ongoing importance and impact of our young experts and education professionals advisory groups who really guide our direction and focus.

As a group we believe collaboration is the key to our ongoing growth and progress and we are really thankful to all members of our steering committee, our supporters and to UKABIF for all their ongoing support.”

The Award recognises the dedication and innovation of neuro rehabilitation professionals going that extra mile to improve the lives of those affected by neurological conditions, ensuring they receive the highest quality of care and support.”

N-ABLES was established on the back of recommendations made in the ABI All-Party Parliamentary Group’s Time for Change Report which pointed to a widespread lack of knowledge in this area for education professionals.

N-ABLES has two advisory groups, the Young Experts (YEBEABI) Group and the Education Professionals (EPAG) Group whose expertise and insights guide the group in their initiatives to ensure the needs of those with firsthand experience are met.

Since being established N-ABLES has produced a booklet ABI Return - Children and Young People with ABI - Guiding their Return to School. They have launched an ABI Passport, a downloadable tool to emphasise the young person’s voice and help teachers understand more about ABI and guidance for concussion.

You can find out more about N-ABLES here.

The UKABIF Annual Awards Dinner took place on 2nd November at The Lowry. In what is always a special evening, it was wonderful to welcome guests to enjoy a fantastic meal before the Awards presentation. 

The winner of the Mike Barnes Award for Innovation was Steven Purdy of Neuroguard - a reusable device that elevates the patient’s head to exactly 30 degrees while maintaining full spinal immobilisation to support best-practice care without compromising safety. Steven, who is a paramedic, developed the prototype having seen that in accidents where there is a traumatic brain injury the patient is often left flat, due to concerns about orthopaedic injuries, despite the research which show that elevation gives better outcomes.

The runner-up was Aaron Chung-Jukko for the Heady app.

The winner of the Stephen McAleese Award for Inspiration was jointly won by two incredible finalists. Joint winners were Steph Grant for the resilience and strength he has shown and Zara Dyer,  who, following an acquired brain injury, established the charity 3 Million Steps. Steph and Zara are pictured below with UKABIF Treasurer, Peter Freeman who was on the panel of judges for the award.

 

The UKABIF Poster Award went to The Children’s Trust for their entry ‘Transforming goal setting in a paediatric neurorehabilitation setting.’ Tim Grove was unfortunately unable to attach to receive his award. Nora Brennan from East London Headway was the runner up and is pictured above with Sabrina McCarron from Thompsons Solicitors.

The Awards are sponsored by Thompsons Solicitors.

The 2025 UK Acquired Brain Injury (UKABIF) Time for Change Summit attracted more than 300 delegates to what was a full day of thought-provoking and informative sessions.

Once again, UKABIF put people with lived experience of acquired brain injury at the heart of the conference ensuring their powerful voices are heard.

The Summit, held at The Lowry in Salford, again saw a wide range of speakers from across a range of disciplines from neurosurgery to case management.

Opening the Summit, UKABIF Chair of Trustees, Professor Andrew Bateman, said:

“The varied programme and the broad church that is the audience reflects the wider umbrella which UKABIF seeks to represent and those whose knowledge, experience and insight we need to inform our work.”

Dr Geoff Manley, Chief of Neurosurgery at Zuckerberg General Hospital and Professor and Vice Chair of Neurosurgery at the University of California, opened the Summit with his presentation looking at the Traumatic Brain Injury (TBI) classifications.

He stressed that the classification of mild, moderate and severe is often not a good predictor of lived experience for TBI survivors. He said: “We would never say 'severe' or 'mild' cancer" - there is no other modern, treatable condition with such an imprecise classification.”

The theme of TBI classification continued with a panel chaired by UKABIF Trustee, James Piercy as he talked to Aaron, Mikayla and Mikayla’s Mum, Julie, about their lived experiences of acquired brain injury. They agreed the classifications were not helpful in their roads to recovery.

39 Essex Chambers Barrister, Arianna Kelly, addressed delegates with her presentation, ‘Walking the Talk’ which focused on Executive Functioning and Mental Capacity. She spoke about 'fluctuating' mental capacity and that someone with an ABI may be able to 'talk the talk' but not be able to 'walk the walk'. She says it is common for people with an ABI to be able to make a decision in a calm and controlled atmosphere but not be able to take a decision in the moment.

Sir John Hayes MP, Chair of the Acquired Brain Injury All-Party Parliamentary Group, addressed the Summit by video. Emphasising the need to centre people with lived experience, he said the mission was now to ensure the Government implements the ABI Action Plan.

Data came under the spotlight for the presentation by Health Economist,  Jennifer Misak who authored the APPG and UKABIF report, Cost to the UK Economy of Brain Injury. She spoke about how data is used to influence policy change and stressed the need for good quality data. She said: “Outputs are only as good as inputs”. The Report highlighted that brain injury costs the UK economy £43 billion every year.

Click here to view this session

UKABIF were delighted to welcome Ashley Dalton MP to address the Summit. As Under-Secretary of State for Public Health and Prevention, she opened by saying: “This Government gets it - we need a plan on acquired brain injury”. She updated delegates on the Government’s 10 year plan for health and talked about the need for timely rehabilitation, especially within community settings.

Click here to view this session

As well as hearing from speakers, Summit attendees had plenty of time to network, connect and chat to the representatives on the 39 exhibition stands which covered everything from healthcare to law and mobility to special interest and campaign groups.

The afternoon started with a session highlighting the recently published NICE guidelines for Rehabilitation of Chronic Neurological Conditions. Case Manager Jackie Dean was joined by Consultant Clinical Neuropsychologist Dr Gaby Parker and Dr Mark Holloway, Case Manager and Expert Witness. They were all part of the NICE panel for the development of the guidance and shared with the audience their personal perspectives on what should be celebrated and also what challenges still remain.

No Child Left Behind was the theme for a symposium chaired by Dr Emily Bennett, Consultant Clinical Psychologist and Chair of the National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES).

Dr Hope Kent, Research Fellow at the University of Exeter, highlighted the issue of SEN (Special Educational Needs) support for children with a TBI and the need for better awareness in education of the impact of an ABI in children. Research shows that 40,000 children acquire a brain injury every year yet the education system is under-resourced and unaware of how to meet the needs of this vulnerable group.

Joanna Woodhouse, SENCO and member of N-ABLES Steering Committee, highlighted the work of the Educational Professional Advisory Group and what has been learnt from talking to teachers. She said teacher education is key to help them effectively plan a return to education for a child with an ABI.

Click here to view this session

The Symposium concluded with a presentation by Baroness Morris of Yardley who was joined by Eden Sill, a Young Expert with Experience of Acquired Brain Injury. Eden shared her experience of navigating the education system and the changing environments of primary and secondary schools through to university. Baroness Morris talked about policy changes needed to improve educational experiences for young people.

Click here to view this session

The final session of the day was a panel discussion ‘Community Rehabilitation and Acquired Brain Injuries: What Does the Future Hold?’ Moderated by Dr Aly Norman, Associate Professor of Psychology at Plymouth University, it saw Occupational Therapist Kate Roach join Luke Griggs, Chief Executive of Headway UK and Decently co-founder James Burch discuss the 10 year plan for the NHS and what challenges face those working to support people with an acquired brain injury.

Click here to view this session

Chloe Hayward, Executive Director of UKABIF, said: “This annual event is so important as it gives us the chance to debate issues which are crucial to improving access to services and support for people with acquired brain injuries and their carers and families. We are very grateful to all those who shared their expertise, which shapes our work and contributes to the building momentum for change.” 

Thanks to Irwin Mitchell, Cygnet Health Care and Enable Therapy Services for sponsoring the event.

View the sessions of the UKABIF Summit 2025 via our youtube channel

Click here

NICE’s New Push for Case Management in Neurorehabilitation — and How Lived-Experience Research Made a Difference

A major advance has just been published by NICE (15 October 2025). Their guidelines on Rehabilitation for chronic neurological disorders including acquired brain injury (NG252) includes strong new recommendations about case management / single point of contact for people needing neurorehabilitation. These are not incremental tweaks, but structural changes with real potential to change how people experience health, social care, and rehabilitation over time.

I’m pleased to say some of my own research contributed directly to the evidence base supporting the need for changes and education of the health and social care workforce. These are the two references:

Norman, Alyson; Holloway, Mark; Odumuyiwa, Tolu; Kennedy, Machaela; Forrest, Hannah; Suffield, Freya; Dicks, Hilary; Accepting what we do not know: A need to improve professional understanding of brain Injury in the UK.; Health & social care in the community; 2020; vol. 28 (no. 6); 2037-2049 [Norman’s paper on peoples’ lived experiences (cited in NICE 2025 consultation on community rehabilitation)]

Odumuyiwa, T., Kennedy, M., Norman, A., Holloway, M., Suffield, F., Forrest, H. and Dicks, H. (2019) ‘Improving Access to Social Care Services Following Acquired Brain Injury: A Needs Analysis’, Journal of Long-Term Care, 0(2019), p. 164–175. (cited in NICE 2025 consultation on community rehabilitation;)]

What NICE Recommends: Case Management & Single Point of Contact

Here are the key points that NICE now says should happen, especially around case management, and why these are important:

• A single point of contact across organisational boundaries. Everyone needing neurorehabilitation should have someone (or some resource/unit) they can turn to, not just within one team or service, but across health, social care, community services, and voluntary support.
  
  
• This role is scaled to level of need:

1. Key contact: for those largely self-managing.
2. Key worker: for people needing more support.
3. Specialist Case Manager: for people with complex needs requiring sustained coordination across settings and over time.

• It is recognised that this is not just about naming someone, but about integrating them into the rehabilitation plan, giving them capacity and authority (or at least linkage) across sectors, so care is coherent rather than patchy.
• Implementation will take time. NICE acknowledges that full system change may take years, but establishing the expectation, building capacity, and making case management a core component is now policy.
• Case management is linked to holistic needs assessments, better signposting/follow-up, managing “invisible” symptoms, and ensuring continuity (for example when people’s needs change, or they move between services).
• The guideline also emphasises that the workforce (health, social care, voluntary) needs to be educated/trained so that professionals know what symptoms to look for, when to refer, and how to work across sectors. Without that, naming a case manager is of limited value.

How My Research Was Used

Here’s how our work (and related studies) contributed to NICE’s decision-making, particularly around case management, the need for workforce training and associated themes:

Key studies & themes

• Among the academic papers underpinning NICE’s case management recommendation, two were led by BABICM (British Association of Brain Injury Case Managers) members (e.g. Clark-Wilson et al. 2016; Clark-Wilson & Holloway. 2015); four, in total, came from BABICM membership. Our lived experience research (e.g. Norman et al. 2020 “Accepting what we do not know…”) and Odumuyiwa et al. 2019 (“Improving Access to Social Care Services…”) were both included in NICE’s evidence reviews.
• In the NICE evidence review “Clinical case management” (Draft for Consultation, April 2025) these papers featured in multiple sub-themes. Some examples:
  • B3.3: Understanding the importance of “invisible” symptoms — our papers provided evidence here (participants described fatigue, emotional/psychological strain, fluctuating or non-visible effects).
  • B4.1: Focusing only on physical injuries and impairments — our work helped show that this is insufficient, that non-physical dimensions matter.
  • B5.1 Adequate follow-up and signposting — our work showed that people often aren’t given ongoing support or told how to re-access services when needs change.
    
    
• The Odumuyiwa et al. paper was used in subthemes such as:
• B1.1: Availability of specialist centres/services
  • B1.3: Limited capacity of services
  • B3.1: Education for non-specialist healthcare professionals
  • B4.3: The role of family/friends in rehabilitation
  • B5.2: Auxiliary / non-rehab services (e.g. benefits, housing, advice)
    
    
• These contributions provided qualitative evidence that reinforced quantitative data, giving a richer picture of what people with neurological conditions experience. For example, how gaps in coordination or in knowledge among professionals make the journey difficult, unpredictable, or emotionally taxing. These insights grounded the case management recommendation: not just that people need someone to coordinate, but why such a role is needed, including for invisible symptoms, follow-ups, changing needs, and cross-sector navigation.

Why This Matters & What It Could Look Like in Practice

These recommendations are more than policy window-dressing. If realised, they could change many people’s journeys. Some reflections on what could change, what obstacles there are, and what to watch out for.

Potential benefits

1. More coherent support: Having a named person who knows the whole person, not just a slice (e.g. physical therapy), helps people avoid falling through gaps. For example, if social care eligibility changes, or if fatigue or cognition needs have worsened but previous service doesn’t pick it up.
2. Access when needs change: With case management, people are more likely to get re-assessment or get referred back if, say, they develop new symptoms or their environment or personal circumstances change.
3. Better navigation / less burden on patient/family: Often people and carers are left trying to figure out what services exist, who to talk to, what paperwork, benefits, housing etc. A case manager or key contact can help reduce duplications, delays, frustrations.
4. Holistic care: Invisible symptoms (fatigue, emotional, cognitive, communication) will receive better attention, not treated as “afterthoughts” or “extras” but core parts of the rehabilitation plan.
5. Greater equity: Where services are patchy, local variability can leave many underserved. This recommendation sets a national standard / expectation, which could reduce variations in access.
6. Support for carers/families: Recognising their role, helping them understand services, giving them support if they are part of someone’s network, not leaving them to struggle in isolation.

Challenges & Things to Watch

• Workforce capacity / training: Implementing case management requires enough skilled people, often with cross-sector knowledge, which is uneven now. Training non-specialists, resourcing key workers/case managers is essential.
• Organisational boundaries and siloed funding: Health, social care, third sector, voluntary sector often have different funding, different leadership, different priorities. Case managers will need levers to work across those boundaries.
• Clarity of roles: Who is the single point of contact? How much authority/responsibility do they have? Will they be able to refer / liaise / advocate? These details matter.
• Sustainability and funding: National guidelines are one thing; making sure local Integrated Care Boards or equivalent bodies commit funding, adjust job roles, monitor outcomes is another. NICE itself acknowledges that full implementation may take up to a decade.
• Maintaining person-centredness: Must ensure the voice of the person with the neurological condition (and their family / support network) remains central. Case management shouldn’t become bureaucratic or tokenistic.

What Next? Recommendations & Research Gaps

From both the NICE guidelines and our experience, here are areas for action and further research:

• Track implementation: which areas are putting in place specialist case managers or key workers, how quickly, with what training, resources, and see what outcomes follow (patient experience, functional outcomes, quality of life).
• Study cost-effectiveness: understanding the resource implications of investing in more case management roles, versus savings from avoided problems (hospital readmissions, delayed declines, etc.).
• Investigate how invisible symptoms are best identified and managed (e.g. fatigue, cognition, emotional wellbeing), perhaps via new tools or screening protocols.
• Look into how technology might support the case management / key contact role (for example, shared digital records, patient-held rehab passports, apps to track symptoms or flags for re-assessment).
• Understand what kinds of support are needed for families, friends, and wider networks (what works, what doesn’t) when people are rehabilitating in the community over long periods.

A Closing Thought

The NICE guideline’s elevation of case management / single point of contact to a central structural recommendation is a win for individuals living with neurological conditions, and for those of us who study lived experience and service gaps. It shifts expectations: not just what rehabilitation services should include, but how they should be organised: flexible, responsive, continuous, and person-centred.

For those of us who have contributed research, it feels encouraging to see qualitative lived-experience evidence taken seriously in policy, not just quantitative studies or trials. But the test will be in the implementation.

If policy makers, commissioners, practitioners, and case managers take this seriously and follow through, millions of people could experience smoother, more dignified, more effective rehabilitation journeys. And as these changes spread, there will be new opportunities for researchers to monitor, evaluate, and provide feedback about what’s working and what needs adjusting.

Written by Dr Alyson Norman, UKABIF Trustee, Co chair of Anchorpoint, Associate Head of Teaching and Learning; Associate Professor of Clinical and Health Psychology; Specialist in Brain injury and Visible difference 

Chaired by Sir John Hayes MP, the event brought together parliamentarians, clinicians, researchers, campaigners and individuals with lived experience of ABI to discuss the ongoing development of the Government’s ABI Action Plan and the urgent need for improved neurorehabilitation services across the UK.

During the reception, Sir John confirmed that a date for a dedicated House of Commons debate on ABI will be announced soon. He also stressed the importance of moving beyond rhetoric, stating: “We need outcomes, not just more dialogue.” The APPG is due to meet with Minister Ashley Dalton, Parliamentary Under-Secretary of State for Public Health and Prevention, in September.

The reception followed a formal response from the Minister to recent calls from the ABI APPG and the United Kingdom Acquired Brain Injury Forum (UKABIF), prompted by the publication of the Right to Rehab report in May. In her letter, the Minister acknowledged the life-changing impact ABI can have on individuals and their families, and committed the Department of Health and Social Care to developing a dedicated ABI Action Plan with clear deliverables. The work will sit alongside the broader ten-year health plan.

More than 60 people attended the event, held in the Attlee Suite in Parliament, where attendees had the opportunity to engage with MPs and hear insights from an expert panel.

A central feature of the reception was the presentation of findings from a newly commissioned report, the Cost to the UK Economy of ABI, authored by Jennifer Misak and presented by Dr Hope Kent (University of Exeter) and Dr Aly Norman (University of Plymouth). Commissioned by the ABI APPG and UKABIF, the report revealed that:

• ABI costs the UK economy £43 billion annually
• Well-being costs related to ABI amount to £91.5 billion
• Neurorehabilitation yields a 16:1 return on investment

The report sets out several key recommendations, including:

• A statutory right to rehabilitation in every UK community
• Dedicated funding mechanisms for community rehabilitation
• A cross-Whitehall standing committee to drive national coordination
• Improved data collection to support commissioning and policy
• Systematic data gathering across services

Also featured were four members of the Young Experts by Experience in ABI group – Victoria, Emma, Eden and Amelia – who gave powerful and personal accounts of the challenges faced by young people living with ABI. Their testimonies underscored the urgent need for better support, access to services, and recognition of hidden disabilities.

Luke Griggs, Chief Executive of Headway UK, presented findings from the charity’s recent report, When Funding Fails, which highlights the severe financial pressures on brain injury services across the country. Based on a survey of local Headway groups, the report warned that community brain injury services are "at breaking point" due to chronic underfunding and rising demand.

Baroness Estelle Morris, Vice Chair of the ABI APPG, also took part in the panel. Attendees included over 20 MPs and Peers; Sir Chris Bryant MP, whose earlier Private Members’ Bill led to the Government’s original commitment to developing a national strategy on acquired brain injury was present at the meeting.

UKABIF Chief Executive Chloe Hayward commented:
"The reception demonstrated the strength of commitment across the sector to driving real change. We’re encouraged by the Government’s renewed engagement and are looking forward to the meeting with the Minister in September. This is a critical moment for improving services and outcomes for people with an acquired brain injury.”

UKABIF has welcomed the Government’s commitment to community rehabilitation in the 10 Year Health Plan for England and called for a statutory Right to Rehab for those who have experienced an acquired brain injury (ABI).

As part of the strategy to shift care from hospitals to new Neighbourhood Health Centres (NHCs), the NHS 10-year plan commits to delivering “effective rehabilitation in the community” - an important step towards the provision of specialist rehabilitation services in every community in the UK. Ministers have also promised to develop an ABI action plan by autumn 2025.

Currently, those who experience a debilitating brain injury face a postcode lottery of provision, while the hidden toll of brain injury costs the UK economy a staggering £43 billion a year, according to a report commissioned by UKABIF and the All-Party Parliamentary Group on Acquired Brain Injury.

UKABIF is calling on the Government to introduce a statutory right to rehabilitation, so that specialist services can be protected in the face of real pressure on NHS budgets. 

Chloe Hayward, Executive Director of UKABIF, said: “We welcome the commitment to community rehabilitation in the 10 Year Health Plan for England and look forward to working with ministers on the development of the ABI action plan. Our recently published report, A Right To Rehab, sets out the cost of acquired brain injury to the UK economy and makes the case for investment in rehabilitation. We are calling on the Government to commit to the recommendations of the report, including the introduction of a statutory right to both specialist in patient and community rehabilitation.”

She added, “Giving patients a right to rehab would not only transform outcomes for patients, but would also deliver substantial economic and social returns. It reduces long-term healthcare costs, increases workforce participation, and alleviates pressure on social services. At the same time, it strengthens communities by enabling individuals with brain injuries to lead more fulfilling lives, contribute to society, and support their families. The ripple effect of these outcomes benefits everyone.”

On Wednesday 25th June 2025, with the help of Baroness (Estelle) Morris, Vice Chair of the APPG for ABI, members of the National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES) were joined by educators and young people with lived experience at a roundtable to discuss the issues which face children and young people with ABI on their return to education.

The meeting was attended by a number of MPs, peers and other parliamentary staff representing MPs and included three past Education ministers (including two Secretaries of State).

The session was introduced by Dr Emily Bennett, Consultant Clinical Psychologist & Neuropsychologist at Nottingham Children’s Hospital & Chair of the National ABI in Learning and Education Syndicate (N-ABLES) and Dr Gemma Costello Specialist Educational Psychologist Lead for the Cambridge Centre for Paediatric Neuropsychological Rehabilitation & National ABI in Learning and Education Syndicate (N-ABLES) who informed those present about types of brain injury and their prevalence of ABI and also how and why children’s brains are different.

They explained that lived experience, expert opinion and research repeatedly highlight three key challenges when supporting children to return and remain in school after ABI:

1.     insufficient data

2.     lack of training for teachers and SENCOs

3.     timely provision for acquired needs in schools

Lucy Seymour – a very experienced Special Educational Needs Coordinator who works in a Secondary School talked about her experience of supporting three different children with acquired brain injuries and how much more she needed to know and understand to support those individuals. Jo Mitchinson, Head of PHSE and parent of a child with ABI described how she learned from her daughter’s injury to put in place procedures and systems within her school for children with brain injuries and they are now able to accommodate their needs

Victoria and Inara from N-ABLES Young Experts by Experience in Brain Injury group talked about their own injuries and struggles to return to school after the huge trauma caused by their injuries, how it changed them and how inadequate school’s adaptations were.

Sir John Hayes, Chair of the APPG for ABI who has himself a lived experience of brain injury and Damian Hinds who held the position of Secretary of State for Education from 2018-2019 asked a range of questions which inspired a detailed discussion and list of actions to take forward.

Those present talked about how to ensure we have accurate data to know how many children and young people have brain injuries in our schools and track their needs over time.

The need to bring greater awareness to teachers and SENCOs so they feel confident to understand and meet the needs of this group of young people in our schools was also discussed and finally the group talked about how to enable a more flexible and responsive system to those with sudden acquired needs; providing resources at an earlier stage.

Dr Hope Kent, who is conducting research into school outcomes for children with acquired brain injuries was able to answer a number of questions about the published evidence base. On 26^th June Hope discussed her research on the links between exclusion from schools, neuro-disability and prison data and developmental delay and poverty on the Today programme.

A number of actions were agreed at the meeting including raising awareness of the issues amongst Parliamentarians through Parliamentary Questions and debates; requesting that ministers introduce new guidance for the return of children and young people to education who have an acquired brain injury and requesting that schools and educational institutions in the UK track those with acquired brain injuries to ensure a safe return to education, through effective training and data tracking.

A full briefing note about this subject is available here and you can also view Dr Bennett and Dr Costello delivering the presentation here.

The report considers the economic impact of acquired brain injuries (ABI) including traumatic brain injuries, stroke and brain tumours. The total impact to the economy including lost productivity, NHS care and the cost of benefits totals £43bn per year, though the true figure is likely to be higher as limited data is available on the impact on mental health, addiction and homelessness services. This is the equivalent of 1.5% of UK GDP. The total costs includes £20bn impact on the NHS and social care, £21.5bn in lost productivity to the economy, £1.9bn in DWP benefits and £1.5bn in costs to education and the criminal justice system.

The report argues that brain injury should be put on the same footing as other major conditions such as cancer, dementia and coronary heart disease which have economic burdens of a similar scale with the same focus on public health prevention, treatment and rehabilitation. It makes seven recommendations to policymakers including a statutory ‘Right to Rehab’ led by clinical specialists in every UK region; which would be funded by savings elsewhere such as acute care and social services. It also recommends a new strategy and better use of data to end the postcode lottery in neurorehabilitation services, along with a cross Whitehall standing committee to break down barriers between government departments to deliver a strategy for Acquired Brain Injury which has been discussed in draft for several years.

Sir John Hayes MP, Chair of the APPG, who in his youth experienced a brain injury, said:

“This isn’t just a debilitating condition for those impacted, who may find themselves suddenly unable to work, function or walk in the way they are used to. It is also a huge cost to society and the economy. If we are to treat some of the most serious societal problems including addiction, mental health crises and violence, we need to look at the root cause - which in the majority of cases is a brain injury. By giving patients a right to specialist rehabilitation in the communities they live in, we can save money and improve lives.”

Acquired brain injury is the leading cause of death and disability for people aged under 40 in the UK. Prison services, homelessness and mental health services are overwhelmed by individuals whose underlying problems relate to brain injury.

There are around 350,000 admissions to hospitals in the UK of people with an acquired brain injury. A study by Her Majesty’s Inspector of Prisons shows that up to 60% of prisoners have experienced a traumatic brain injury.

Chloe Hayward, Executive Director of UKABIF, said:

“Giving patients a right to rehab delivers substantial economic and social returns. It reduces long-term healthcare costs, increases workforce participation, and alleviates pressure on social services. At the same time, it strengthens communities by enabling individuals with brain injuries to lead more fulfilling lives, contribute to society, and support their families. The ripple effect of these outcomes benefits everyone.” 

The Northern Ireland Acquired Brain Injury Forum was established in 2024 to replace the former Acquired Brain Injury Working Group, marking a significant step in shaping policy, raising awareness, and improving services for the ABI community.

Originally formed by the Health and Social Care Board, Public Health Agency, and voluntary organisations under the Regional Acquired Brain Injury Implementation Group, the working group was created following a 2010 review of ABI services. Over the years, the group played a key role in raising awareness of ABI, engaging with the public, policymakers, and service providers, while promoting professional training.

Following on from the work of the Acquired Brain Injury Working Group, the Northern Ireland Acquired Brain Injury Forum will provide a coordinated platform to improve the lives of those affected by acquired brain injury. Its mission is to influence policy, advocate for individuals and families, and ensure services in health, social care, education, and employment meet their needs.  

The Forum reflects the ongoing collaboration of key organisations in the sector, including Brain Injury Matters, Cedar Foundation, Child Brain Injury Trust and Headway, ensuring the continuity of experience and commitment to those affected by ABI.

By embedding strengthened collaboration among statutory bodies, voluntary organisations, clinicians, and people with lived experience, the Forum aims to raise awareness, share best practices, and reduce service inconsistencies. Through initiatives like Action for Brain Injury Week and continuous advocacy, the Forum strives to improve outcomes, drive innovation, and build a more inclusive society for those living with ABI in Northern Ireland.

The launch event was officiated by Mike Nesbitt MLA, Minister of Health, who said:

“Acquired brain injury can have a profound and lasting impact not just on individuals, but on families and communities. The establishment of the Northern Ireland Acquired Brain Injury Forum is a welcome and necessary development creating a dedicated forum to ensure that the voices of those affected are heard, their needs are addressed, and their rights championed. I commend the collaborative spirit behind this initiative and look forward to seeing its positive impact.”

Gerard Anderson, Chair, Northern Ireland Acquired Brain Injury Forum said:

“The launch of the Northern Ireland Acquired Brain Injury Forum represents a step forward in our collective approach to acquired brain injury in Northern Ireland. By bringing together voices from across sectors, we are creating a stronger, united front to advocate for better services, to raise awareness, and ensure that no one affected by ABI is left behind. This Forum is about meaningful change and shaping the future of everyone living with ABI.”

NIABIF is aligned with the United Kingdom Acquired Brain Injury Forum (UKABIF), ensuring that Northern Ireland has a strong voice in UK-wide efforts to improve outcomes for people living with ABI. This alignment allows NIABIF to contribute to and benefit from national policy developments, shared learning, and coordinated advocacy across all four nations. By mirroring the strategic aims of UKABIF, the Northern Ireland Acquired Brain Injury Forum strengthens its capacity to influence regional and national policy while addressing the unique needs of the Northern Ireland ABI community.

“We are delighted to see the establishment of the Northern Ireland Acquired Brain Injury Forum. This Forum represents an important step forward in ensuring a consistent and coordinated approach to supporting people with acquired brain injury across the UK. By aligning with UKABIF, the Northern Ireland Acquired Brain Injury Forum strengthens our collective voice and reinforces the shared commitment to improving awareness, services, and outcomes for everyone affected by brain injury.”

Chloë Hayward, Executive Director, United Kingdom Acquired Brain Injury Forum (UKABIF)

Through this collaborative approach, UKABIF aims to strengthen its policy influence and develop initiatives that are grounded in frontline insight and professional expertise. These strategic partners will support UKABIF’s ongoing mission to ensure that the voices and needs of those affected by acquired brain injury (ABI) are heard and addressed at every level of decision-making.

Each partner brings unique and complementary strengths:

Irwin Mitchell is a prominent law firm with a longstanding commitment to supporting individuals affected by serious injury:

“Irwin Mitchell are delighted to continue our ongoing support for UKABIF as a strategic partner. UKABIF's efforts in advocating for individuals with an acquired brain injury cannot be underestimated. Their collaboration with the Government to implement policy changes is crucial for improving the lives of those affected. Supporting organisations like UKABIF can make a significant difference in raising awareness and driving positive change for the acquired brain injury community.” said Lynne Carrick-Leary, Senior Business Development Manager and Senior Associate at Irwin Mitchell.

Cygnet Health Care is a leading provider of neuropsychiatric and mental health services:

Rachael Chamberlain, Business Development Director - Neurological said, “Cygnet Health Care continues to value the strategic partnership with UKABIF which we have now had for several years. Specialist Neurorehabilitation is such a valuable aspect to a person’s recovery post brain injury and the vital work which UKABIF continues to achieve in getting this treatment acknowledged and accepted as an essential step to a person’s recovery is so important. We are looking forward to working with UKABIF for another year”

Enable Therapy Services is a specialist provider of rehabilitation and therapy services across the UK:

"We're particularly looking forward to bringing our clinical perspective to UKABIF’s policy work. By incorporating insights from our direct work with patients, we can help ensure that policy recommendations truly reflect the realities of brain injury recovery. said Becky Simpson, Head of Neurology and ABI Services.

A key forthcoming initiative is the development of a new report which will provide an analysis of the Cost to the UK Economy of Acquired Brain Injury, adding to the "Time for Change" campaign. This will be a crucial document which will support UKABIF’s work that shapes policy and practice in brain injury care throughout the UK.

UKABIF sincerely thanks Irwin Mitchell, Cygnet Health Care, and Enable Therapy Services for joining as strategic partners. Together, we look forward to advancing meaningful change for people living with acquired brain injury across the UK.

Since its inception, Time for Change Wales has worked to implement the recommendations of the 2021 Time for Change report, which outlined priority actions to improve services and outcomes for people affected by acquired brain injury (ABI) across Wales. With the support of Case Management Cymru, the programme has moved from policy into practice, bridging the gap between strategy and delivery.

Dr Bryant’s involvement has brought a new level of consistency and momentum to the work. From supporting local ABI forums to developing bilingual training resources for schools, her leadership has enabled progress that would not have been possible through a volunteer-only model.

Julie Smith, Director of Case Management Cymru, committee member of the South Wales Acquired Brain Injury Forum and active participant in the Time for Change subgroup, highlighted the impact of the role:  “Eleanor’s time and expertise has enabled the recommendations identified in the 2021 TFC report to progress beyond what the solely voluntary committee could have hoped to achieve. We now have evidence-based data regarding the gaps in ABI training for teachers, and have developed bilingual training resources specifically for Wales. Our next aim is to map the unmet needs across Wales in relation to community support and rehabilitation, while capturing and sharing the incredible work that is happening in pockets around the country.”

The continuation of this post ensures that Time for Change Wales can maintain its strategic direction while remaining grounded in the lived experiences and practical needs of individuals, families, and professionals across Wales.

UKABIF extends its sincere thanks - diolcho o galon - to Case Management Cymru for their continued commitment to improving life after brain injury in Wales.

Chloe Hayward, Executive Director of UKABIF said: “We are incredibly grateful to Case Management Cymru for their continued support of this vital role. We have very exciting plans for the year ahead and with this support we can ensure we hope to make a tangible difference to the lives of people with brain injury in Wales. This kind of collaboration between the clinical and voluntary sectors is exactly what’s needed to drive long-term change.”

‘Pathways to Work: Reforming Benefits and Support to Get Britain Working’ Green Paper

The Government has published proposals to reform welfare refocusing support for those who are unwell or disabled to that which gets people back into work. People who are disabled as a result of their acquired brain injuries are feeling powerless, anxious for the future and at the mercy of the government over these announcements.

We will be responding, but you can respond to the Government consultation now – details and links below.

There is concern that the Government’s proposals could hit people with acquired brain injuries and their families very hard, if implemented in full. While we agree a greater focus on prevention, early intervention and personalised support is much needed, the financial impact of tightening eligibility to essential disability benefits could have a severe effect on individuals and families who are already struggling.

Speaking on BBC Radio 4 this week, Steve who sustained a brain injury following a road traffic accident stated that he could be £900 a month worse off which will result in him being homeless. He told the BBC: “There is no softening that blow…it is quite terrifying”

In response, Rachel Reeves promised that when people with brain injuries like Steve are reassessed, she will want him to be seen by a trained assessor in person and that there should be a “higher premium” for those with a more severe disability. 

Currently people with acquired brain injuries don’t know how they will be affected, which is causing huge anxiety as they await their next assessment. Although the Chancellor has promised to increase the number of face-to-face assessments UKABIF are concerned about how well-trained and informed assessors will be about acquired brain injury, as the issues affecting people are so varied and complex.

“We would like to see a greater focus on specialist rehabilitation which includes vocational rehabilitation and support for employers to help people back into work. Community rehabilitation and support is vital. The Health Secretary has said ‘rehab is key’

There must be an understanding that many people with acquired brain injuries will not be able to support themselves financially through no fault of their own. It cannot be right if they end up in poverty as a result. In addition, assessors must be properly trained in brain injuries and assessments must be face to face.”

We want to work constructively with Government to get a fair deal for people with acquired brain injuries – including a right to rehabilitation which would save the NHS billions of pounds which is supported by the Health Secretary.

We have written to members of the All-Party Parliamentary Group for Acquired Brain Injury and have requested a meeting with the new health minister to discuss our concerns, and how to improve access to rehabilitation and support.

UKABIF will be responding to the proposals, and you can also feedback via this link (the deadline is 30 June)

This is an 18-month project, funded by ADR-UK in partnership with UKABIF. We will examine ECHILD data to answer our research questions. ECHILD (Educational and Child Health Insights from Linked Data) is an administrative data linkage connecting hospital data with the National Pupil Database. We are requesting data for a birth cohort of all children born between 1^st September 2003 and 31^st August 2004, who attended school in England.

The researchers have requested the following datasets:

Health: A&E (and ECDS), Admitted Patient Care
Social Care: Children Looked After and Children In Need Census
Education: Early Years, KS1, KS2, KS4, Absences, Exclusions, School Census, PRU and AP

These data will be used to answer the following questions:

1.     How many children present at hospital with an injury or illness indicative of ABI?
How does the prevalence of ABI vary across socio-demographic profiles?

2.     What SEN provision do children with ABI receive, and which SEN categories are they classified under? Does SEN provision vary based on geography and/or socio-demographic characteristics?

3.     Does having an ABI make a child more vulnerable to school absence, exclusion, or poorer educational attainment compared to peers with no ABI, or peers with orthopaedic injuries? What injury characteristics impact these trajectories?

4.     How does SEN support moderate the impact of ABI on educational outcomes?

Dr Hope Kent is the Research Fellow leading on the project, based at the University of Exeter. Professor Nathan Hughes (University of Sheffield), Professor Huw Williams (University of Exeter), and Professor George Leckie (University of Bristol) are mentors on the project. 

The work is funded by ADR-UK (co-funded by the Economic and Social Research Council, and the Medical Research Council). 

Stephen McAleese Award for Inspiration

The Stephen McAleese Award for Inspiration was awarded to Claudia Laird and Mike Howarth. 

Claudia, who was nominated by After Matters who support young people living with a brain injury. Claudia was diagnosed with a brain tumour at the age of 24 and during recovery she remained determined to complete her nursing degree. She now works as a paediatric nurse at Royal Manchester Children’s Hospital. 

Mike was nominated by Amy Crosby. He was involved in a serious motorcycle accident in 2020 which resulted in him having a severe TBI and amputation of his left arm at the scene. Mike has not allowed his injuries to define him and has worked tirelessly with his team to rewrite his story. He has now returned to cycling, horse riding and has a passion for clay pigeon shooting too! Mike briefly stayed at STEPS rehabilitation and is now a Trustee of their new foundation and supporter of their work. 

A huge congratulations to both Claudia and Mike – both incredibly inspirational individuals.

The Mike Barnes Award for Innovation

The Mike Barnes Award for Innovation was awarded to Recallify .

Recallify is an AI-powered memory support, training and productivity app which can transcribe and summarise conversations. It has been designed by Dr Sarah  Rudebeck and Dr Berkan Sesen  to help individuals to easily record, review, and recall their experiences. This intuitive app enhances communication and makes memory management simple for everyone. 

Recallify enhances memory by using science-backed brain training techniques, such as spaced repetition and the testing effect. The app automatically generates personalised questions from recorded memories, helping strengthen recall and improve long-term retention through regular practice.

We are really excited to see how  Recallify advances even further in the future!

The Poster Award 

The Poster Award went to Dr Henk Swanepoel, from Cygnet Health Care. 

The Poster was entitled ‘Correlation study between the Free Cog and Addenbrooke’s Cognitive Examination (ACE-III) within Acquired Brain Injury (ABI) population. 

The finding that functional impairments are not often assessed with cognitive screening instruments (CSIs) was the basis for this poster. The degree of ABI as indicated by CSI’s may not correlate with functional scales, indicating a need for functional as well as cognitive testing. The  poster concluded that within the ABI population the Free Cog is an adequate alternative to the ACE-III when measuring cognition. 

An incredibly detailed and useful piece of research for all those with an interest in ABI.

The UKABIF 2024 Summit, held at The Lowry in Salford on Monday 4 ^th November, attracted a record audience this year.

UKABIF Chair of Trustees, Professor Andrew Bateman and Trustee James Piercy welcomed the 350 delegates to the day before the presentations took place.  The theme running throughout the programme was inclusion of lived experience and  many sessions were co-present ed  by people with experience of acquired brain injury . This is  central to UKABIF’s work  and  received a warm response from attendees. 

In the opening session, Labour activist and Chief of Staff, Natasa  Pantelic spoke about  her experiences in politics, the government's plans for health and spoke passionately about how we can all affect change to improve  outcomes for people with an Acquired Brain Injury . 

Kate Tantam from #RehabLegends  presented the power of patient stories and how they  are a huge catalyst for change within the NHS and wider systems. 

Kevin Quarterly, who described his lived experience of brain injury explaining the struggle to find the right support and the  importance of his wife’s support ,  was followed by Dr Mike Dilley who  spoke about  the importance of diagnosing functional symptoms to ensure appropriate approaches to rehabilitation.

Dr Virginia Newcombe from Brains TBI and her co-investigator  Joanne Lloyd discussed  the  much needed reclassification for Traumatic Brain Injury, which  will  see the removal of the currently used ‘mild’, ‘moderate’ and ‘severe’and the importance of putting patients front and centre of research.

New in post at the National Rehabilitation Centre, Director of Research Professor Rui Loureiro  gave an overview of the Centre’s Research strategy whilst Debbie Butler spoke about her lived experience and how important patient involvement is to her life.

Identical twins Ellis and Luke Parry shared  Luke's TBI recovery journey from a patient and caregiver perspective, and talked about  how this motivated the founding of  neumind - a startup aiming to improve access to gold-standard neurorehabilitation. 

The team behind the Heads Together Research Project, gave a  three pronged synopsis of the ir  NIHR funded work, which  addresses  the under-researched and under-taught  area of Brain Injury Social Work.

The day culminated in a panel discussion on how to improve  outcomes for people with acquired brain injurywhich included Dr Krystyna Walton, Paul Brown and Dr Mike Dilley  and was expertly chaired by Paul from  Exchange Chambers.

In addition to the line-up of speakers throughout the day, delegates had the opportunity to speak to almost 40 exhibitors including legal firms, physiotherapists, charities and tech companies who offered a wealth of information, advice and goodies for the attendees.

Chloe Hayward, Executive Director  of UKABIF, said: “We are delighted to have hosted another incredible Summit bringing together such a fantastic line-up of expert speakers. As always, their knowledge and experience was inspiring to hear and learn from.

“As well as the programme of speakers, the Summit is always a wonderful opportunity for delegates to make new connections which can only help in our commitment to improving the lives of everyone with an acquired brain injury. Thank you to everyone who came along - together we are making positive changes.”

Our thanks to our sponsors Irwin Mitchell, Cygnet Health Care, Slater and Gordon Lawyers, and Leigh Da y. 

A more detailed review of the summit is available here.

The biannual event attracted over 400 delegates with 71 speakers from 24 countries. The quality and breadth of the presentations was excellent, with keynotes from Prof Chris Giza (US), Prof Steve Clifford (UK) and Dr Shannon Scratch (Canada).

The Acquired Brain Injury Justice Network hosted the Lord Ramsbotham Memorial Lecture, introduced by Professor Nathan Hughes with presentations from Professor Tom McMillan and Professor Liam Dorris.

The National Acquired Brain Injury in Learning & Education Syndicate (N-ABLES) ran a symposium entitled ‘Nothing about us with out us: Putting Lived Experience of ABI at the Forefront of Research and Practice’. The session was introduced by our Young Experts by Experience in ABI group (YEBEABI) and featured presentations from Rachel Keetley Shannon Scratch, Jennifer Lundine and Edel Jannecke Svendsen. Our enormous thanks to them and also to Charlotte Giblin, Dr Gemma Costello and Dr Emily Bennett who organised the session.

Finally Eleanor Bryant presented her work exploring educators understanding of acquired brain injury in a session entitled 'A UK-Based Survey Exploring Educators’ Understanding of Childhood Acquired Brain Injury (ABI): Evidence of Training Gaps and Insufficient Policy Implementation in Schools'.

UKABIF also formed part of the local organising committee, chaired by Professor Liam Dorris working alongside Beth Wicks Dr Katie Byard, Dr Gemma Costello, Dr Emily Bennett, Gerard Anderson Lisa Turan Lorna Wales and Stacey Dodd. The committee have worked alongside the conference organisers and IPBIS for two years planning the event.

Professor David Menon received an CBE for his services to neurocritical care. David is a Professor at Cambridge University and founded the Neurosciences Critical Care Unit at Addenbrookes Hospital, where he pioneered the first recognised training programme for specialist neurocritical care in the UK. He is a leader in national and international research jointly leading the EU funded CENTER-TBI and is the Principal Investigator for TBI-Reporter of which UKABIF is a central part.

David was also the executive editor of the All-Party Parliamentary Group Report entitled ‘Acquired Brain Injury and Neurorehabilitation: Time for Change’ which was published in 2018 and forms the cornerstone of UKABIF’s work.

The CBE recognises a prominent national role, a conspicuous leading role in regional affairs through achievement or service to the community, or a highly distinguished, innovative contribution in his or her area of activity.

Of his award, Professor Menon said, ‘I am deeply honoured to accept the CBE on behalf of all those who have worked with me during what has been – and continues to be a very rewarding career.’

Dr Andy Tyerman received a British Empire Medal - a trustee of Headway UK Andy was Clinical Lead and Head of Service at the Community Head Injury Service, Buckinghamshire Healthcare NHS Trust.

A clinical psychologist by background Andy developed his neurorehabilitation skills at the then Wolfson Medical Rehabilitation Centre and the Joint Services Medical Rehabilitation Unit at RAF Chessington. 

After moving to the Community Physical Rehabilitation Service in Aylesbury in 1987, he planned, developed and oversaw provision of the Community Head Injury Service which strived to provide as responsive a service as possible with the resources available.

The integrated community rehabilitation, vocational rehabilitation and family services have all been cited as national examples of good practice, which Andy attributes to the excellent inter-disciplinary team, and the positive response of people with brain injury and their families.

Andy has developed a resource which seeks to address the lack of understanding of the long-term effects of brain injury, lack of awareness of the Equality Act and raise awareness of disability rights and reduce discrimination  https://www.equitynotjustequality.co.uk

Dr Tyerman says, ‘Reflecting on this award, the courage and resolve of people affected by brain injury has inspired me throughout my career. Working with people with brain injury, their families and friends has been a great privilege. Whilst I am no longer involved directly in service provision, the ‘Aylesbury model’ of community brain injury rehabilitation continues to evolve through the current team. Long may this continue, along with other community brain injury service provision and the vital support of Headway.”

Some of the work undertaken by the core members of Amser am Newid -Time for Change group over the last 18-months, made possible through funding from CMC includes carrying out a survey exploring educators' understanding of childhood acquired brain injury across the UK. This research has been conducted in partnership with N-ABLES, UKABIF’s special interest group in Education. Additionally, the funding has supported the publication of a bilingual version of the Return to Education guidance specific to Wales which aligns with the new Curriculum for Wales. Due to their continued commitment, the ‘Amser am Newid – Time for Change’ group is now able to deliver their 2024 strategy. 

Julie Smith, CMC Operations Director and group member says, ‘I am delighted Case Management Cymru is continuing to partner with UKABIF to drive forward the ‘Amser am Newid-Time for Change’ strategy for 2024.  Building on the progress already made and drawing attention to the impact of brain injury in the education and health sectors are crucial to improving outcomes for ABI survivors and their families.’

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.”