Finding purpose post-brain injury

Neelam’s life was turned upside down when she was diagnosed with a brain tumour and life-saving surgery left her with a range of complex health needs. However, the support she received from St Andrew’s Healthcare has helped her find purpose again. 

Neelam, 42, was a young mum, with a job that she loved in a multinational pharmaceutical company, when she began experiencing constant headaches, vomiting and dizziness. 

After years of visiting her GP, she was eventually referred for an MRI scan that discovered a large brain tumour on her pituitary gland. 

Neelam underwent life-saving surgery at Addenbrooke’s hospital in Cambridge and while the surgery was successful, it left her with a range of mental, physical, and behavioural needs. 

The damage to Neelam’s brain has affected her cognitive abilities and her ability to regulate many of her bodily functions. This includes being unable to tell when she is full, which coupled with her memory difficulties, leaves her at risk of overeating.

Meanwhile, fluctuating sodium levels and thermoregulation problems can cause her to become confused and frustrated, this has been known to result in extreme mood swings and verbal aggression towards others. 

A long road to recovery 

Neelam was “acutely unwell” when she was admitted to St Andrew's Healthcare in 2019 after other neuro-rehabilitation services struggled to manage her complex needs.

On admission to Berkeley Close Ground Floor, a 12-bed service for adult women who have an acquired brain injury (which has now moved to Elgar ward), Neelam struggled to understand why she was placed under such close supervision. 

“At the time I was frightened, I didn’t really know what was going on,” says Neelam.

“I had very mixed feelings about being moved to a new hospital. I had been brought to a new place, full of new people.”

Dr Kevin Beckles, Neelam’s Clinical Psychologist at St Andrew’s, explains: “There was lots of verbal aggression. She was hyper-fixated on taking in food and fluids and couldn't understand why she needed to monitor these things, or why she needed the enhanced support to ensure her safety in that regard.”

The clinical team worked with Neelam and her family on a non-pharmacological, neuro-behavioural programme that supported her holistic needs and aimed to help her to gain greater independence and eventually move her towards more independent living arrangements.

This approach aims to improve functioning and understanding through various motor, cognitive, emotional, and other activities and therapies which reduce risk and increase learning opportunities.

Together they worked on building a “therapeutic timetable” of activities which meet Neelam’s needs for “meaningful engagement” and “purpose”, but also keep her focused on something “constructive”, Dr Beckles explains.

Introducing some simple tools, such as keeping a journal to help with her memory problems, enabled Neelam to structure her day, establish routines and use her positive behavioural plan (PBS) to manage her behaviours. Neelam also credits the support she receives from her husband and wider family in helping her to achieve her goals in recovery.

“From how I understand her presentation at the time of admission, compared to the person that I met when I started at St. Andrew’s in 2021 and continue to see, it's almost like night and day,” adds Dr Beckles.

Embracing advocacy and education 

As her recovery progressed, parts of Neelam’s previous drive and enthusiasm began to shine through, and she became more and more engaged in advocacy and education-focused activities.

Her weekly schedule soon included arts and crafts sessions, held at the St Andrew’s activity centre, and supporting medical students on their placements to understand brain injuries. 

She took on a “mothering role” on the ward offering support and insight to help others navigate their distress in more constructive ways, and her determination to reach her 10,000 steps a day (and encourage others to do the same) earned her the title of “wellbeing champion”.

“By the time I met her she was well on her way to independence, having been working through an extensive therapeutic timetable and spending lots of time off the ward engaging in different activities,” said Dr Beckles.

“Whether that was patient activities or supporting endeavours with charity leadership, Neelam was there.”

Neelam also benefited hugely from St Andrew’s vocational education service, Workbridge, where she tried ceramics, tapestry and found a love for jewellery making.

Workbridge has helped hundreds of people to gain or regain skills and build their confidence and independence, with the opportunity to sell their creations in the public-facing garden centre, charity shop and coffee shop.

“It gives patients like Neelam the chance to be supported through opportunities such as setting up online shops to sell the work that they're making, so they have agency and pride in knowing that they're doing something that's earning an income, but at their own pace,” says Dr Beckles.

The first step towards independent living 

Neelam recently moved into a supported transition house in Berkeley Close, which provides 24/7 nursing support for men and women recovering from brain injury.

The community-based structure supports patient progress by testing and consolidating their daily living skills, cognition and behavioural management in a safe environment, with the support of a full multidisciplinary team.

Neelam has her own self-contained living space, but still has support staff on hand to monitor and regulate her sodium and fluid levels throughout the day.

This is an important next step for Neelam, explains Dr Beckles, and one which she was more than ready for.  

“It will provide her with more opportunities to lean into independence, doing things to take care of herself, such as cooking and going into the community to buy groceries—all these aspects of daily living which would have been managed by the staff on the acute ward,” he says.

“It places her in a good position, should the opportunity ever arise, for her to go to an even more independent living setup, she would have built those foundational skills.”

Looking to the future 

While Neelam may never be well enough to return to her former career, she feels more positive about the future now, describing the move to Berkeley Close as a “big moment”. 

Acceptance and Commitment Therapy, and a values-based approach, has helped her come to terms with what this future might look like.

“It’s been really helpful for Neelam in identifying that there is a part of her, an observing/ noticing self that is untouched by circumstance, which was present prior to her tumour and brain injury, remains present now, and will continue to be present in the future, " Dr Beckles explains.

“Previously Neelam’s value was rooted in her professional identity. By assessing and understanding what her values are, and the things that others value about her, Neelam is beginning to understand that this is very little to do with her professional identity, and more to do with her core values including being loving, caring, empathic, showing up and being helpful.”

Having taken part in a number of initiatives at St Andrew’s, including raising awareness of the stigmatising language and other challenges facing those with mental health difficulties, Dr Beckles anticipates that Neelam will use her journey to be a powerful advocate for others who have had similar experiences. 

“I see Neelam very much stepping into the role of advocate and champion for those who have had brain injuries or mental health difficulties,” he adds.

“She may continue to need some level of support, but it is hoped that this will open up avenues to different settings within which she can live and the freedom to spend time with her daughter as she wishes, which is really important for Neelam, as it would be for anyone.”

If you would like to find out more about how St Andrew’s can help support you with a complex female brain injury referral, please call the team on t: 0800 434 6690. Find out more about their specialist neurobehavioural services HERE