“I want to reframe what happened to me into something more positive”

In May 2022, a stroke turned Aneta's life upside down. She tells us how it led to her becoming a public contributor for the Stroke Health Integration Team (HIT), and what this has meant to her.

I had just resigned from the Department for Work & Pensions assessing people for disability benefits, a job which I had done for a long time. I was looking forward to starting a new role in occupational health medicine (my background in Poland is in psychiatry). But just after resigning from my old job and before starting the new one, I had a stroke.

I spent two months in the BRI before I was discharged. I felt like I had lost everything. It was an incredibly stressful situation, waking up with anxiety every morning about what was going to happen.

When my new employers said that the job was still open, it gave me an enormous amount of hope and motivation. It took me out of the misery and the darkness I was in, lying on that hospital bed.

I told them that I could start in September, but when the time came my occupational health assessment said that I wasn’t ready, so I had to turn it down. While I felt disappointed, it was a relief, because mentally and emotionally I knew I wasn’t ready. From there I focused on my physical rehabilitation, so I was better prepared to go back to work when I knew I was able.

Towards the end of 2022 I looked for voluntary work. In January 2023 I started mentoring through Bristol After Stroke and joined the Stroke HIT, because I wanted to reframe what had happened to me into something more positive.

I try to use my experience to be helpful and supportive for people in a comparable situation to mine, and to improve the system too. I attend the HIT’s Training and Education Group, and their Lived Experience Group. While the local stroke service is going in the right direction now, the patient perspective is still needed because the system is so hard to navigate. For example, when I was discharged from hospital it was difficult and stressful to set up repeat prescriptions for all my medications. It took months to sort it out, so my being able to share experiences like this with people who can change things can only be positive.

I found out about the HIT through Helen Ellis, an occupational therapist who I met during my rehabilitation. Our personalities just clicked. Helen is the Team Lead for the Integrated Community Stroke Service. She is trying to create something very innovative to support people affected by stroke – a multidisciplinary back-to-work service, linking the clinical elements with things like benefits and counselling.

In November 2023, she led a back-to-work event, bringing all these elements together. They asked me to give a talk, drawing on my professional experience in the benefits system and my occupational health training, alongside my personal lived experience of stroke. Seeing so many different professionals wanting to help stroke-affected people return to work was very encouraging, positive, and hopeful. Part of my dream is to be able to contribute to this service if it can develop.

I am now working temporarily in a primary school as a part-time teaching assistant. The school is in quite a deprived part of South Bristol, so it is lovely to see the efforts the staff make to improve life for the children and their families. Paradoxically, the energy from the children gives me a lot of positives. The job drains me physically, but the spiritual and emotional side boosts me!

Having previously worked as a clinician, it was important for me to find a job that would give me a sense of purpose. I am in a privileged situation because my husband is working, so I don’t have to worry too much about my income to support our family. This job provides that purpose, which in turn helps my recovery.

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