In 1993, my brother ‘Tom’ – at age 22 – had a serious car accident that led to a severe brain injury. He was in hospital for over six months and had to learn how to eat, talk and walk again. His long-term injuries included wide-ranging memory problems, difficulties making decisions, poor concentration, slowed speed of processing, mood swings and depression.
At the time of my brother’s accident I was only 12; despite this I was actively involved in his rehabilitation from the moment he left hospital. This involved regular trips to his flat to walk with him to the local shop, helping him to learn to walk again without relying on his wheelchair for short journeys. This was something that we as a family, and my brother as a brain injured person, had no support with; community rehabilitation services were simply not available.
As well as having experienced such a severe injury, Tom had also experienced historic brain injuries throughout his childhood, mild enough that they had gone largely unnoticed except as a footnote in his medical records. At the age of three Tom was hit by a car and taken to hospital where he was diagnosed with a head injury. Later, at the age of eight, he fell off his bicycle and experienced yet another ‘mild head injury’, and again at 14 years of age following a sport-related injury. All of these were reported as mild but were all significant enough to warrant follow up or time spent in hospital. He went on to have a fourth head injury at the age of 16 due to a motorcycle accident.
While the impact of these early head injuries is unclear, throughout my brother’s teenage years, he struggled to fit in at school and repeatedly found himself on the wrong side of the law. Tom was fond of taking risks, eventually falling in with a group of other boys who were keen on drugs, shoplifting and theft from property. These incidents led him to be arrested on numerous occasions and him being assigned a family social worker. At no point did anyone make the connection that Tom’s behaviour could be a result of brain injury. As such, he was punished when what he really needed was support.
Sadly, at that time the research base had yet to establish the link between brain injury, particularly executive impairment, and involvement in crime. We understand now that individuals with brain injuries are over-represented among the prison population and are known to be more likely to commit drug-related, violent, or petty crimes, such as shoplifting, due to cognitive and behavioural difficulties associated with their brain injury (Shiroma et al 2012; Williams et al, 2010).
Tom’s injuries also led to poor mental health, with him experiencing many episodes of depression throughout his teenage years and early adulthood. This led to a suicide attempt at the age of 21 not long before his last car accident.
Following his severe injury at 22, Tom’s mental health did not improve. He experienced difficulties with depression, substance misuse and experienced intense insomnia and physical pain that had a marked psychological impact. Despite this, he was repeatedly refused access to mental health provision, either because he had a brain injury, or because he was not considered to have an organic mental health problem. This ultimately led to him taking his own life in June 2014. As one might imagine, this left a huge hole in the lives of his family, who had fought for many years to keep him alive despite a lack of support from numerous services.
A new organisation to help families who have experienced brain injury
In September 2021 a new organisation launched named ‘Anchor Point’, of which I am a part. The organisation includes a broad range of clinicians, researchers, brain injury professionals and family members who have come together to drive change to improve family life after acquired brain injury.
Anchor Point’s aim is to create a space where people with different experiences and knowledge of families affected by brain injury can connect, contribute, inform, and improve service provision by working together to create a shared understanding of what life looks like for families after brain injury. At the heart of Anchor Point is the concept of ‘ripples’, referring to how the impact of brain injury is not only on the injured person but ‘ripples’ through the whole family, much like the ripples on a pond. Research has demonstrated that family members are often overlooked, side-lined and left unsupported following brain injury (Holloway et al, 2019), even though they are often left responsible for many aspects of daily care. This may include activities of daily living, such as washing and dressing, but more often tends to include ‘managing the life’ of the injured person and supporting them with decision-making, remembering appointments, initiating tasks, and coping with emotional outbursts.
"Anchor Point’s aim is to create a space where people with different experiences and knowledge of families affected by brain injury can connect, contribute, inform, and improve service provision"
The team at Anchor Point were originally brought together by Dr Charlie Whiffin from the University of Derby, now Chair of the organisation. I have been privileged enough to be elected as the deputy chair. We are hopeful that in due course we can become registered as a charity. We currently have a good social media presence and a landing page on the United Kingdom Acquired Brain Injury Forum’s (UKABIF) website, but we are hoping to expand out and have our own website soon.
Anchor Point is an important organisation because the focus is very much on the family rather than the injured person. While the impact of brain injury on the injured person is the concern of every family member, they are often supported through other well-established organisations such as Headway UK and regional branches, the Stroke Association and other organisations. Family members are often less lucky, with little to no support available. This leaves families floundering in the dark to find information about brain injury, learn to understand how their lives will change, manage the ongoing burden of care and be responsible for managing the person’s life moving forwards. This is often done without any emotional or practical support. Furthermore, family members’ experiences are often subsumed into the focus that is generated on the injured person and their journey, failing to appreciate that brain injury is also a life-changing event for those surrounding the injured person.
My interest in joining Anchor Point and assisting Charlie in growing the organisation has been two-fold; professional as well as personal.
From a professional perspective, I have been a researcher in the field of brain injury now for nearly 20 years, with a keen focus on the experiences of family members. I have also worked closely as a psychotherapist with family members following brain injury and seen the impact that it can have on each individual. This is an experience I can appreciate all too well, as the sister of a person with a traumatic brain injury.
As a family we received no support to understand brain injury and what life might be like longer-term. We received no benefits, weren’t signposted to brain injury services, and certainly had no support on an emotional or psychological level.
How Anchor Point aims to help families
Although relatively new, Anchor Point is already a large collective of individuals working on a range of different aspects of family life after brain injury. Our working groups consist of the following: Research, Information, People, Policy, Lives, Education and Support (RIPPLES).
Currently the research team are working on building a repository of leading international evidence relevant to families affected by brain injury. As part of this we are identifying influential, seminal, and contemporary research to add to a repository on our website. The team have also worked hard on developing a regular ‘research in focus’ piece for posting on social media that summarises/translates both new and older research important to this field.
The research team comprises of a range of different researchers at different points in their careers. We have recently established a supportive student community where students can register their research and, among other things, come for help and advice with various aspects of research in this area.
Our biggest project at present is working with the Lives and Support teams to produce a review of the literature that exists on information and support services available for families following brain injury.
The information team have been tasked with providing up-to-date and well-researched information to individuals, families and brain injury professionals which focuses specifically on the family experience of brain injury. While this is still a work in progress, the team are currently working on identifying informational resources that are already available for families and pooling these into a single resources document. Longer term, the team aim to create a webpage which translates hard-to-read academic research papers into more accessible versions that everyone can understand, as well as plan and organise experiential days for families to attend.
"While this is still a work in progress, the team are currently working on identifying informational resources that are already available for families and pooling these into a single resources document."
The People group is focused on creating a community within Anchor Point, connecting people within the organisation. This is being achieved through bios, pictures and videos of members. Longer term the focus of this group will shift to connecting people with similar family experiences to facilitate peer to peer support.
The policy group aims to ensure family needs are represented and reflected in all policy work. This may include, but is not limited to, collating case studies to illustrate the issues and difficulties faced by families of those with an acquired brain injury; providing evidence to inquiries and consultations which are relevant to this area and ensuring a seat at the table is provided for those with experience of a brain injury in the family.
The Lives group are focused on sharing the lived experiences of family members following brain injury. This will be achieved through a series of written narratives, audio podcasts and YouTube videos of family members sharing their experiences on a range of different topics. It is important that awareness of the lived experience is raised among professionals.
The education group are currently working hard on understanding what education may be needed specifically to help family members to cope with issues such as problems attending appointments, or being limited in how they can contribute to rehabilitation. These are aspects that have become more problematic since the beginning of the COVID-19 pandemic. The other key focus of the group is on supporting self-care for carers rather than information and education on how to be a carer.
Finally, the support group aim to provide a consolidated ‘roadmap’ of the resources and services available to family members at different stages of the journey following brain injury. This would serve as a resources service that would allow people to be signposted to services more appropriately.
These are all elements that I as a family member would have found helpful at various stages of my own journey as a family member after brain injury. It is my hope that over time Anchor Point will grow to be a nationally recognised resource for family members after brain injury and for professionals looking to support and signpost family members.
For more information about Anchor Point, visit our webpage: https://ukabif.org.uk/page/anchorpoint , or join us on social media:
Linked IN https://www.linkedin.com/groups/9022229/ ;
Holloway, M., Orr, D. & Clark-Wilson, J. (2019). Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Injury, 33, 401-411.
Williams WH, Mewse AJ, Tonks J, Mills S, Burgess CNW, Cordan G. Traumatic brain injury in a prison population: prevalence and risk for re-offending. Brain Inj. 2010; 24(10): 1184-1188.
Shiroma EJ, Ferguson PL, Pickelsimer EE. Prevalence of traumatic brain injury in an offender population: a meta-analysis. J Head Trauma Rehab. 2012; 27(3): e1-e10.
Dr Alyson Norman is an Associate Professor of Psychology at the University of Plymouth.