Dad, Tommy, and Me

One wintery afternoon on the last day of term in December, I was greeted at the school gates by my Grandad. I had been expecting Mum, but he told me she was with my Dad at the hospital. Those were the last few moments of my childhood as I knew it.

It wasn't long before the words 'your Dad has a brain tumour' were uttered, and they echoed around my head. I felt confused, wishing it could all be undone. I remember thinking, 'if I don't ask for a new phone for Christmas, can Dad have his brain back?' The days that followed were a blur of medical professionals, whispered conversations between adults, opening Christmas presents at my Dad's bed side, and (sorry Nan), a Christmas dinner not quite to Mum's standards. 'Tommy the tumour' had joined the family.

We spend so much time as therapists holding space for other people's thoughts, feelings, and experiences. Perhaps it's time we stopped to consider our own experiences, and how they led to our areas of work. A significant amount of those working in Psychology have lived experience – an understanding and perspective gained from our own lives. This lived experience can shape how we think, feel, and act as people and practitioners.  That's what Tommy has done for my work in a specialist neurorehabilitation service.

The problem with Tommy

On average across the UK, 3200 cases of glioblastoma are diagnosed every year. This type of brain tumour is regularly described by medical professionals as an aggressive and terminal acquired brain injury (ABI). Typically, people survive up to 15 months post-diagnosis, with only 10 per cent living up to five years. My Dad was part of that 10 per cent, after being diagnosed in his early forties with a glioblastoma multiforme.

Brain tumour symptoms can occur over several months or years, depending on the speed of growth. For my Dad, Tommy presented a sudden onset of issues related to balance, co-ordination, and painful headaches. This can be a common experience for patients as the tumour grows and causes intracranial pressure. This means that the brain is unable to function as it should. It was due to the location of Tommy that my Dad showed those significant issues with his balance and coordination. At the time, silly 'mishaps' that had taken place e.g., burning or spilling things and scratching the car parking, suddenly became patterns of changed behaviour in the months prior to diagnosis.

Following surgery to remove Tommy, my Dad also experienced some difficulties with his immediate memory. I recall him using strategies such as list-making to help him to retain and recall important information. This is a common cognitive strategy following ABI and one that I use with patients now.

As a child during my Dad's years of treatment, I recall the patience and kindness of staff amidst all the chaos of surgeries, therapies, and uncertainty. The smiles from nurses broke up what felt like endless sitting in waiting rooms and attempts to read the faces of my parents as they left appointments, trying to prepare myself for the news that might follow. Couple this with the quiet car rides to reviews and mediocre snack options in hospital vending machines, hospital was never my favourite place, and it really wasn't Dad's. I remember distracting him with games of 'eye spy' and singing his favourite Queen songs. Nevertheless, there was always the inevitable news that Tommy had returned. Dad ultimately passed away at home with family after his long battle. 

Bringing lived experience into practice

As a part of my work, I have been fortunate to contribute to the support of families and child relatives. Evidence suggests that families experience high levels of anxiety and depression during the years following a loved one's diagnosis. For child relatives, this can be a traumatic experience and often leads to feelings of anxiety and feeling at fault for the injury or illness occurring. These findings resonate with my own thoughts, feelings, and experiences with Dad.

By creating and distributing resources we aim to encourage others to open dialog with children around their experiences and to reduce the stigma and impact of trauma. This can be done with age-appropriate psychoeducation materials. Some of my favourite resources are our adaptable teddy bears. These aim to open conversation and understanding around specific injuries and can be tailored to the individual's condition e.g., helmet for those with craniotomy and tracheostomy for those in the hyperacute rehab phase. Alongside information and activity sheets, we hope these interactions with child relatives will become part of routine practice for professionals.

Another way we aim to involve families in care and treatment is by creating one-page profiles. This approach is a way of encouraging the shared understanding of an individual to support staff interactions. Information is collected from family, the patient if possible, and wider Multi-Disciplinary Team (MDT) to indicate what is important to the patient and ways they can be supported during treatment. 

An experience of creating a profile for a non-verbal patient allowed me to feel able to support and understand the individual as well as the needs of the family and MDT. Gathering information with her daughters and sharing material jointly with Speech and Language Therapy (SLT) ensured that the patient's needs and wishes could be highlighted to staff. This was used to manage experiences of distress, agitation, and restlessness. Suggestions such as playing her favourite music, lowering the stimulation in the room, and fun activities were suggestions to better their experience of inpatient rehab. Gathering information and presenting it in this way can support person-centred care and have positive influences on outcomes. This approach reminds me of how staff took the time to interact with me as a child and how they would engage with my dad during hospital stays and appointments. 

My own experiences and interactions left such an impression that many years later I came to work for the specialist NHS trust that treated my Dad. I now support individuals and their families' experiencing journeys similar to that of my own. Being open about my lived experience in clinical supervision allows me to hold my own thoughts, feelings, and reactions, whilst completing work that I feel motivated by, connected to and proud of.

Neurorehabilitation and Clinical Psychology

It is thought that every 90 seconds in the UK there are brain injury related admissions to hospital. This averages around 350,00 individuals and families that are impacted by acquired or traumatic brain injuries each year. Acquired brain injury (ABI) is an injury that occurs since birth, such as a tumour or stroke. A traumatic brain injury (TBI) is a trauma caused to the head, such as road traffic accidents or assaults.

The aim of neurorehabilitation is to implement supportive measures for those experiencing disability caused by brain injury or illness, with the aim to improve a person's level of functioning. Better outcomes for patients can be reached the earlier they are able to access neurorehabilitation. An MDT approach aims to address an individual's needs including in domains of cognition, communication, and physical health.

Through one-to-one, joint MDT work, and groups, the role of clinical psychology in this environment can be to support with areas of cognition and emotional wellbeing. Within the rehabilitation unit that I work in, each individual and their family/carer are on admission allocated a member of the psychology team without referral. An initial assessment is completed with all patients where appropriate i.e., considering and adapting to any cognitive and communication needs. Following assessment, more individualised care planning can take place. Regular sessions are then held one-to-one, via groups or jointly with the wider MDT as indicated. The clinical psychology team also offer staff wellbeing support including weekly staff mindfulness sessions. This is an initiative introduced during the Covid-19 pandemic that receives encouraging feedback.

Being human is our superpower

There is emerging evidence that those with lived experiences can and must be encouraged to contribute to the psychology profession to improve equality and diversity. I do wonder if there are more of us out there that have been reserved in sharing our lived experiences through fear of criticism or judgement, speaking from my own experiences. As a profession that aims to reduce individuals' experiences of stigma and fears of judgment, are we perhaps being limited by our own?

During a peer supervision session at the start of my journey in psychology, we discussed a statement that still resonates with me now: 'you become someone that the younger version of you would feel safe with'. I can say now that in more ways than one, I am someone 'little me' would have felt safe with, and in part that is due to my lived experiences. I am content that as a service we strive to be a positive experience of calm in the inevitable chaos of life. Being human is our superpower – with appropriate guidance and support we can bring our lived experiences along with us to positively influence our practice.