Breaking Down the Barriers of Illness – Action for Brain Injury Week 2022

Breaking Down the Barriers of Illness – Action for Brain Injury Week 2022


For Action for Brain Injury Week, we’re sharing Katie’s story. Katie is part of our People team and she recently told us about her experiences of Autoimmune Encephalitis, which if left untreated can cause permanent brain injury, to try and break down the barriers of an unseen illness.

Katie says: ‘I started my role as a HR Business Partner at the end of September last year. I had applied for a new role as Head of HR and planned to start in March. I am 43 and have been married to Michael for 19 years and have a son, Ted who is now a teenager.

I wanted to share with you my experiences of the last few months and share my gratitude for the support I’ve had from colleagues, family, friends and clinicians. Like everyone, the last two years with Covid have affected a lot of areas of my life: from work to school, with family shielding, and family in hospital. It meant that I had not had the normal time to rest and recuperate during breaks and holidays. Sadly, I also lost my mum in November last year and so had grief to work through as well.

At the end of January this year I had a thudding headache (not a normal headache) and although I never really go to the GP, I did on this occasion, but they seemed to think there was no cause for concern. I have about 70% hearing loss, so I also asked my audiologist to check me, which he did and again, no concern. I then started to struggle during online meetings with trying to understand what was going on, and my husband noticed that my speech was a little bit odd.

That night, I went to hospital and I was so lucky that they immediately did tests and thought that I had had a stroke (a worry for friends and family as my mum had a stroke in April last year). I was admitted and within a night it was clear I had not had a stroke. I was quite poorly, the tests were looking at a brain tumour, a brain infection and it seems that it was/is autoimmune, a condition called Autoimmune Encephalitis. I lost speech, reading, writing and wasn’t understanding much.

However, I am now getting the right treatment and with this – and the support of colleagues, family and friends – I am now getting better. I was so lucky with the Consultants, Doctors, Nurses, SALT, Catering, Healthcare Assistants and Admin; they were all amazing. The tests and technology were also brilliant.

A lot of family and friends know I am impatient and I want to get better quickly – but I need to be positive with all that I have to learn. With regards to wellbeing going forward, I need to ensure my diet is better, that I don’t worry about small things and that I spend more time with my family and friends; brain awareness is important.

I am so lucky that I work at Active Care Group. My colleagues have been amazing and I really appreciate the culture, the behaviours and amazing work with the patients. It’s incredible the support and kind words I’ve received from colleagues across the group – from the Executive team, to every colleague and hospital. Everyone has been so kind to me – as they are to patients and other colleagues. I’m also so lucky that colleagues have also been inclusive and helping me learn. I can’t wait to be back with everyone, but am really clear that Brain Awareness and wellbeing are crucial for me and our company.

I have been able to return to work but still have many challenges following the likely diagnosis of the encephalitis; there is still injury on the brain relating to language and confidence in talking to people without planning a conversation. The impact of this is the time it takes to plan meetings and whilst friends and family are aware of the understanding, no one else, in shops, travelling and companies know; they cannot see the struggle of the language.

I can start a conversation but cannot recall the words I want to say; sometimes I can say a different more basic word recalled but I am frustrated that I cannot recall a word, this then effects the ability to continue a conversation. There are many times I can start a word, but not complete it, or I say the wrong word which can be embarrassing and causes me to lose confidence. I sometimes wear a badge to say I have a brain injury but in the public it can feel that I am making myself vulnerable.

Whilst I appreciate that I have learned to read and write over time and I am incredibly thankful for the recovery to date, there is a worry not knowing the future. I imagine anyone with an injury loses confidence in public and can feel vulnerable.

I am lucky to have a team and organisation are all supportive, sometimes its time needed to allow someone with a brain injury to recall a word or alternative. Its tiring taking in information and hard to then respond; it’s important to give time rather than overtake.”