DOWN BUT NOT OUT: THE FIGHTER STILL REMAINS
BABICM ANNUAL CONFERENCE REPORT
Over 380 case managers attended BABICM’s two-day Annual Conference held this month at the East Midlands Conference Centre, Nottingham. Vicki Gilman, BABICM Chair welcomed delegates to hear about new developments in Sport-related Acquired Brain Injury (ABI) on Day 1, followed by an update on Protection, Safeguarding and Regulation on Day 2.
“It’s wonderful to see so many of you here for this interesting and stimulating conference programme” said Vicki, and she thanked the sponsors, in particular the headline sponsors Irwin Mitchell and RWK Goodman, and the exhibitors for their support.
Lucy Nichol, Partner, Irwin Mitchell chaired Day 1 and Maria Meek, Partner at RWK Goodman chaired Day 2. BABICM members heard from a wide range of experts about new science and practices that can impact their clients with brain injuries and complex medical conditions.
Progress in sport-related ABI research
The Freda Newcombe Memorial Lecture, held in memory of Dr Freda Newcombe, a neuropsychologist and one of the original members of the Brain Injury Case Management Steering Group, the forerunner to BABICM, was delivered by Dr Michael Grey, Reader in Rehabilitation Neuroscience, University of East Anglia. He discussed the history of sport-related ABI and the Screening Cognitive Outcomes after Repetitive head impact Exposure in Sport (SCORES) project currently underway at the university.
Concussions affecting athletes in both contact and non-contact sports have received significant media coverage in recent years as a result of the increase in scientific literature and growing concern around the long-term effects. The publication of autopsy case studies of retired professional athletes and research reporting increased mortality rates due to neurodegenerative diseases in former professional athletes has added to the awareness of the long-term issues.
It was almost 100 years ago when Dr Harrison Martland, a medical examiner, presented a paper looking at 23 unverified cases believed to be experiencing a ‘punch-drunk’ state, so called because neurologists struggled to explain the slurred speech, memory loss, shakes, violent mood swings, depression and other symptoms shown by boxers. In recent years, chronic traumatic encephalopathy (CTE), caused by repeated blows to the head, has been redefined from the original condition resembling Alzheimer’s disease (AD) in professional boxers to a new condition observed in athletes, military personnel and civilians that shares many features with known psychiatric disorders and other forms of dementia.
“We’ve known about CTE for a long time in boxing but now attention has turned to other sports, including football” said Michael. In 2015, the film Concussion, starring Will Smith, highlighted the issues by telling the story of Dr Bennet Omalu, a forensic pathologist who challenged the National Football League. The professional organisation was trying to suppress his research on CTE brain degeneration suffered by professional football players.
In 2017 researchers from the VA Boston Healthcare System and Boston University studied 202 deceased American football players whose brains were donated for research. They found CTE in 177 American football players across all levels of play (87%) including 110 of 111 National Football League players (99%). The CTE severity was distributed across the highest level of play, with semi-professional and professional players having severe pathology. The most important UK study was carried at University College London and looked at 14 retired footballers with dementia with post-mortem examinations carried out in six ex-players. CTE pathology was present in four of the six brains examined, and all six also had signs of AD.
Like AD, CTE can cause dementia and they are both characterised by a build-up of abnormal tau protein in the brain, but CTE causes tau to accumulate in a distinctive pattern. There is no disease-modifying therapy for the treatment of these so-called tauopathies. Michael said: “After 40 years of age the brain does decline and regular health assessments in the UK are ‘not a thing’. The problem is that we are not catching the onset of dementia early enough.” He discussed the SCORES Project, s currently assessing 288 men and women online every three months who were, or are, active in sport, using gold standard neuropsychology assessments to and assess neurodegeneration across a range of cognitive domains. Michael commented: “We want to determine the age and rate of decline in athletes with early detection that then allows signposting to help and treatment interventions”. The data is being analysed and will be published shortly.
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Jeff Astle’s legacy continues to drive change
Dawn Astle, a pioneer in raising awareness of the issues of the long-term effects surrounding brain injury, spoke passionately to delegates about her father, Jeff Astle. He had an outstanding footballing career at Notts County and West Bromwich Albion and was a member of Sir Alf Ramsey’s 1970 World Cup Squad. His ability to score many gaols using his head was probably the cause of his dementia and onset of AD. Dawn said: “The game which Dad was so good at ultimately killed him”.
Following Jeff’s death in 2002 at just 59 years of age, the post-mortem findings raised serious concerns for the game of football and sport in general. However, the football professional body choose to ignore the findings and their implications. Dawn commented: “The union meant to support the players completely failed them”.
The Jeff Astle Foundation was established in 2015 to raise awareness of brain injury in all forms of sport and to offer much needed support to those affected. Dawn discussed her personal experience of living with brain injury, the fact that her father was subsequently found to be the first footballer to die with CTE, and the implications for the world of football.
“For too long this scandal has been kept silent by the sport; football has to confront the reality of neurodegenerative disease” said Dawn said. The Foundation is lobbying for much needed changes including encouraging brain donation for future research. Dawn concluded: “Dad’s brain is now speaking for the living, and we hope that future generations will be safer as a result”.
Going for gold after injury
Laura Collett MBE, a British equestrian and member of the 2020 Tokyo Olympic gold medal-winning eventing team described achieving her dreams despite having a near-fatal accident. A heavy fall from her horse in 2013 at a one-day event in Hampshire resulted in severe injuries including fractures of her spine, shoulder, and ribs, and losing the sight in her right eye. Laura had to be resuscitated five times and was given an emergency tracheostomy by paramedics and placed in an induced coma for a week.
Through hard work, rehabilitation and determination Laura was back competing six weeks after the accident. This led to her Olympic dream re-surfacing, and she was selected for the 2020 Olympic Games in Tokyo and was part of the gold medal winning team. Laura said: “Never dream too big. Anything is possible”.
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Litigation looms for professional sports bodies
Samuel Cuthbert, Barrister at 12 King’s Bench Walk Chambers discussed the complex issues surrounding sports injury litigation. To succeed in an action of negligence, the victim has to prove that they were owed a duty of care, the duty of care was breached and that the damage suffered was caused by that breach.
Players, clubs, professional bodies, and referees can all be sued. In contact sports such as football or rugby, players have a duty of care to one another. To demonstrate a breach of that duty, the conduct must be reckless and fall below the standard required of a skilful and competent professional player, and not just an error of judgement. Proving negligence is not easy.
One successful negligence case was brought by the boxer Michael Watson who suffered a near-fatal brain injury in a boxing match in 1991. His case was upheld against the British Boxing Board of Control (BBBC) because although ringside medical facilities were available during his match they did not provide immediate resuscitation. By the time Michael got to hospital he had sustained permanent brain damage. The judge said that the BBBC was supervising the match and was expected to provide medical care. The decision was upheld by the Court of Appeal of England and Wales, who noted that the BBBC had a duty not only to ensure that injuries did not occur, but that injuries were properly treated.
Litigation claiming negligence on behalf of the professional bodies, particularly for rugby and football is looming. Sam said: “Those who regulate a sport are likely to be held responsible for its consequences. Once a governing body is aware of the risk then a duty of care means they need to act to mitigate the foreseeable harms that it could exist.” However, although the literature highlights the issues, there is no consensus linking concussion in contact sports with CTE and other neurological conditions. Sam said: “This doesn’t help the claims”. However, given the evidence-base perhaps governing bodies should have done more to protect players.
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Managing sports-related ABI and parasport challenges
“Managing sports-related ABI is important and you need to be fully recovered before returning to sport.” said Dr David Millar, Clinical Neuropsychologist, Cognisant in his introduction to the importance of good management and the challenges for parasports.
David focussed on the clients of BABICM members who have pre-existing conditions and are at greater risk of concussion and who also can take longer to recover from a sports-related ABI. He said: “You have to weigh up the risks of the people that you are working with. Do they understand the short and long-term risks of taking part in the sport?”
Individuals with sports-related ABI have a wide range of symptoms that are non-specific, some have prolonged symptoms which may be unusual and may not follow the ‘usual’ recovery guidelines for that sport. David emphasised that people ‘need to be managed on a one-to-one basis’. There is a paucity of concussion research related to parasports, and the tools used to assess brain function following concussion are neither validated nor applicable in some respects for a parasport population.
Managing the ‘Return to Play’ with the pressures from athletes, coaches, and the team to get back to the sport can be challenging. The lack of specialist availability to assess the sportsperson can be difficult and knowledge of pre-injury functioning is crucial when assessing if the individual is fully recovered. Education and communication are important and health professionals need to know how to manage and what protocols need to be implemented. Baseline assessment should happen pre-season, knowledge of the red flags indicating neurological deterioration is crucial and assessments required to ensure recovery is ongoing.
David concluded: “Sport is fantastic. It provides so many benefits for an individual. It is a balance, but as case managers you need to consider the risks for your clients, consider baseline assessments and evaluate the organisations that govern that sport, their knowledge of concussion, protocols, and their ability to access health professionals if there is a problem.”
IRCM update and new supporter community
Angela Kerr, Chair, Institute of Registered Case Managers (IRCM) outlined the organisation’s progress towards holding a register of case managers and gaining the accreditation required from the Professional Standards Authority (PSA). Angela said: “Having a proper registration process and support with accredited training for case managers will provide reassurance for those who purchase or commission case management and help to protect the public who use case management. We aim to apply to the PSA later this year for our accreditation.”
The IRCM will hold a register of individuals working in line with case manager specific standards, which can be viewed by the public or commissioners. This is important for transparency and part of the IRCM’s commitment to becoming accredited by the PSA. The organisation will be able to handle concerns for all case managers registered with the IRCM and provide a certificate and accredited pathway of training.
The certificate of proficiency that demonstrates an individual’s knowledge base will be assessed online using multiple choice and case studies. Angela said: “The assessment won’t delve into specialisms; at this stage we’re only looking to assess the minimum level of competence that clients have a right to expect”.
The IRCM wants to establish a Supporters Community of supporters who provide case management, instructing case managers or are appointed by case managers. Angela said: ”For a small fee, supporters will be featured on our website, attend supporters’ events, receive priority access to sponsorship activities and be able to showcase an IRCM supporter’s logo on their signature and website”. She encouraged people to get in touch for further information.
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Social highlights
Delegates, sponsors and exhibitors gathered together in the evening for a drinks reception, held in hotel garden followed by a superb dinner and were entertained by comedian Aaron Simmonds. Aaron was born with cerebral palsy and in his own words ‘Aaron Simmonds has been failing to stand up for 32 years; luckily he is far better at comedy than standing up. He has a unique perspective on life, usually of people’s belly buttons, which gives him stories to tell, and a sore neck’.
The BABICM Fellowship Award was announced during the dinner. The recipient was Penny Haysom of Penny Haysom Case Management Ltd.
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Neuro-imaging informs chronic mTBI symptoms
“I look after many patients with brain injuries, and I appreciate the role of case managers – you are one of few professional groups that understand how much of a problem these individuals have” said Dr Steven Allder, Consultant Neurologist at Re:cognition Healthcare. Steven provided new insights into the long-term symptoms following mild Traumatic Brain Injury (TBI) as a result of advances in neuro-imaging techniques – especially magnetoencephalography (MEG).
Steven said: “We still can’t agree why people get long-term symptoms after being hit on the head – it’s complicated and controversial”, he commented. The long-term symptoms are subtle, very impactful, and chronic; individuals look normal but are struggling with everyday tasks, time management, their lives, and jobs. It affects people in their prime and they struggle to be believed and get the support they need.
A force applied to the head triggers a set of injuries at the molecular level which is dynamic. Brain cells are damaged, and this damage will peak at 72 hours and then there will be a process of recovery over days, weeks, and months. The molecular consequences in several areas of the brain cause clinical features that can be monitored in hospital. However, the individuals that struggle longer-term typically have a deterioration in symptoms when most people are in recovery. “Capturing that dynamic reality is difficult” said Steven.
Steven discussed function from the perspective of three networks; cellular network, executive network, and a default network; our brains are sampling between these three all the time. These networks do not work properly if an individual has concussion. Current structural imaging is unable to show the full picture of activity and Steven said: “We’re still a long way from being able to interrogate the brain at the resolution required but we’re making progress”.
New neuro-imaging techniques such as MEG, a functional brain imaging technique with high temporal resolution has shown functional network connectivity changes in mTBI that cannot be seen with conventional anatomical imaging techniques. This is promising but currently MEG is mostly limited to research usage. Steven concluded: “MEG will be extremely powerful for understanding the controversy, but we need to be able to use this in clinical practice”.
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Watch and learn – the Open Justice Project
Claire Martin and Gill Loomes Quinn discussed observing the Court of Protection (CoP) in action and the learning opportunities for case managers.
The Open Justice CoP Project is now two years old and available online www.openjusticecourtofprotection.org. Details of hearings are provided that can be observed immediately, chosen from the listings published in the CoP Daily Cause Lists and available after 4.30 pm on the day before the hearing. The project is independent of any public body or university, run on a voluntary basis, without funding and promotes Open Justice in the CoP. The decisions made by the court on behalf of some of the most vulnerable members of society can be life-changing, and the case law it produces impacts the rights of disabled people far beyond the walls of the court rooms. The number of applications to the CoP is huge but the number of published judgments is small.
Gill said: “I’d encourage everyone to observe and learn – it will really help your practice and help you to understand the lengths that the CoP goes to before making a judgment”.
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CQC registration can be challenging for case managers
“An assessor will may have one case management application each year and very likely not know anything about what you do so you will need to educate them” said Andy Brown, Registration Adviser at the Care Quality Commission (CQC).
The CQC is one of the largest regulatory bodies in England. It does not register services, it registers providers to ‘carry on’ regulated activity, i.e., the responsibility for ongoing care and control, and not the service provided. Applicants must satisfy the CQC that they comply with the requirements and the vast majority of applications are granted. Andy emphasised that it is a Section 10 offence to carry on a regulated activity if you are not registered.
For case managers there are two key questions. Will any regulated activity be provided and if so, which? Will the case management provider carry on those regulated activities? If the answer is ‘yes’ then the case management provider will need to register with the CQC. He acknowledged that the system is not simple, was not developed for case managers and discussed some of the ‘quirks’ regarding definitions which can be confusing but said: “The CQC isn’t out to catch people – it tries to apply the regulations in the public interest”.
Andy will be hosting a BABICM webinar Q and A at a later date.
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Turning practice-based evidence into evidence-based practice
Students from the University of Plymouth and Dr Alyson Norman, Associate Professor of Psychology, presented three studies. Jackie Dean, Chair of BABICM Research Group introduced the group and said: “My thanks to BABICM members for providing the data for studies like these”.
…defining good outcomes for clients
Jessica Lowry and Thomas Wakeham presented ‘whose outcome is it anyway?’ highlighting that a good outcome is client-centred and determined either by the client or in conjunction with the client, and where appropriate, their family, to achieve improved quality of life. The case manager’s role is to target the external factors that are influential contributors to a client’s outcome. By supporting the family, facilitating access to quality services, and providing justification for funding, the case manager helps to meet the client’s needs and successfully re-establish their lives. The best way to encapsulate the effectiveness of this is to monitor the holistic progress of the client through holistic work with clients and family members. Changes to monitoring outcomes are essential to strengthen the role’s evidence-base and ensure that more clients can achieve their desired outcome.
…COVID-19 and its impact on case-managed rehabilitation
Ben Needham-Holmes presented a study looking at the impact of COVID-19 on case-managed rehabilitation after ABI. The study showed that pre-existing relationships helped to maintain human closeness during the pandemic and led to better mental health outcomes for clients and families. Everyone benefitted from increased support, but many found this lacking. There was conflict between all parties regarding the restrictions imposed and physical health was impacted by the reduced physical support and access to rehabilitation, especially speech and language therapy and physiotherapy. Safeguarding was an issue. Case managers used the pandemic as an opportunity to engage in knowledge development.
…reducing the incidence of ABI suicidality
Alyson presented a study carried out in conjunction with Griffiths University in Australia looking at the increased risk of suicidality in the TBI population compared with the general population. The study concluded that health professionals need to provide support and information to enable clients to accept their injury. Techniques such as acceptance and commitment therapy may be useful. Identity and loss of identity play a key role in understanding suicidality post-injury and fostering social support networks is vital to ensure reduced levels of suicidality long-term.
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Improving ABI knowledge for social workers
Dr Mark Holloway, Senior Brain Injury Case Manager, Head First, discussed a review1 of safeguarding adults reviews that identified significant shortcomings in social work practice, education, and training in the UK with regards to ABI.
The review provides recommendations for current social work practice and highlights the need for significant improvements in pre- and post-qualification training and supervision of social workers. Mark illustrated his talk by discussing a young man called James who lived in Brighton and had a major subarachnoid haemorrhage, was failed by the system over several years and died in hospital after being found unconscious in the street. Mark said: “ABI knowledge is still lacking amongst the statutory services and as a consequence it is not integrated into assessments. This must change.”
- Holloway M, Norman A. Just a little bit of history repeating: the recurring and fatal consequences of lacking professional knowledge of Acquired Brain Injury. The Journal of Adult Protection 2022;24:66-89.
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Adapting the CJS for vulnerable people
“A childhood brain injury increases the likelihood of someone committing a violent crime by adulthood” said Professor Huw Williams, Associate Professor of Clinical Neuropsychology, University of Exeter as he introduced the audience to crime and people with brain injury.
Evidence emphatically links ABI to offending in young people, with prevalence rates as high as 60% amongst prisoners. An estimated 65% of adult males in the prison population report TBI, and for women in prison the prevalence of head injury is 55%. These individuals will potentially struggle in the Criminal Justice System (CJS) as a result of the impact of their brain injury.
The lack of recognition and understanding within the CJS about the ‘hidden’ disabilities of ABI results in many barriers to accessing justice. Individuals with ABI may have difficulty understanding the terminology and language used, communication may be challenging especially in interview situations, and their behaviour misinterpreted. A lack of ABI knowledge may result in the inappropriate use of standard criminal justice interventions that do not address the behavioural issues related to the injury and are therefore ineffective in preventing ongoing offending. TBI in offenders typically leads to greater mental health problems and an increased risk of suicide.
New management and assessment procedures, as well as advanced training programmes, are now being developed by the UK prison system. Assessment tools such as the Comprehensive Health Assessment Tool (CHAT) and the Brain Injury Screening Index (BISI) are available. Early identification of a brain injury requires specialist interventions to manage the health, cognitive and behavioural issues. Huw commented: “These individuals need tailored and specialised support within the justice setting to prevent them re-offending”.
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Liberty protection safeguards replace DoLs
The Liberty Protection Safeguards (LPS) were introduced in the Mental Capacity (Amendment) Act (MCA) 2019 and were to replace the Deprivation of Liberty Safeguards (DoLS) system. The implementation date of April 2022 was delayed, and no new date has been specified.
The LPS will provide protection for people aged 16 years and above who are or need to be deprived of their liberty in order to enable their care or treatment and lack the mental capacity to consent. The proposed LPS includes three assessments which form the basis of the authorisation of the LPS. There will be greater involvement for families, a targeted approach, and extending the scheme to include 16- and 17-year-olds and domestic settings. The LPS creates a new role for Clinical Commissioning Groups and NHS Trusts in authorising arrangements. In Wales, the ‘Responsible Body’ will be the local health boards. There will also be a new specialist role of Approved Mental Capacity Professional.
Lorraine Currie, Professional Lead MCA at Shropshire Council posed some key questions: What is liberty? What is protection? What are we protecting? What is point of making someone safe if they are miserable? An individual’s well-being and safety are crucial but associated with many contentious issues. Lorraine said: “I believe in invisible scaffolding. Look at the person’s strengths and do not be limited by disability friendly options.” The support should be invisible, and always consider how it can be reduced. Risk management should be implemented that promotes autonomy and creative ways to address common risks. A ‘feeling’ of independence is important and all professionals should view the whole person with knowledge of the impact of the brain injury.
“If we get the safeguards in the LPS right then the sky is the limit” said Lorraine.
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Mental capacity, unwise decisions and involving third parties
Jemma Morland, Solicitor (Property and Affairs) and Eilish Ferry-Kennington, Senior Associate Solicitor (Health and Welfare), EMG Solicitors discussed the principles of the MCA, the complexities of capacity assessments, unwise decisions, safeguarding and DoLs, Court of Protection Welfare applications and family disputes.
A capacity assessment may be required when a decision needs to be made, when there is doubt about the individual’s decision-making ability, or the individual has already been assessed to lack capacity with regard to other decisions. The individual may have a change in their circumstances or is having a care plan developed or reviewed. Eilish discussed the presumption of capacity and the preparation required for carrying out an assessment. Individuals may make unwise decisions but should not be treated as unable just because the decision is unwise. These situations have the potential to trigger capacity assessments, but autonomy has to be balanced against safeguarding to avoid paternalism and the potential for discrimination.
Eilish and Jemma discussed several individuals to illustrate the many issues surrounding all aspects of their work.