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UKSF Highlights: Stroke survivor Kate Cooke’s story

“I went back to work and it was really difficult. I was working from home, they were too scared to help me into the office, it was up two flights of stairs.”

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During day 2 of the UK Stroke Forum, in a session focussed on vocational rehabilitation, Kate Cooke shared her experience of returning to work after stroke.

In January 2022, Kate suffered a cerebellar stroke at only 42, however, she would go undiagnosed and instead told she was suffering migraines.

Before her stroke, Kate worked full-time as a HR and senior manager, overseeing 200 staff as well as thousands of volunteers.

She described the role as “massively rewarding” and that she “never stopped.”

In short, Kate’s life was busy, she has a pre-teen daughter who “has a schedule as busy as my own” she says.

Despite a busy schedule, Kate kept active as she tells the audience she was “regularly exercising for the first time in years, and was feeling the fittest I felt in years.”

“Then boom…”

Migraines aren’t very nice

Kate’s whole life was flipped upside down as she suffered what would be her first stroke, yet she was told by paramedics that it was “probably just a migraine,” due to Kate lacking FAST symptoms, she was told it could not be a stroke.

“The paramedics wouldn’t take me to hospital, but my husband could sense something was wrong. 

“I couldn’t walk, stand or hold my head up, is this what migraine feels like?” 

Kate would spend the next three weeks making back and forth visits to the hospital, whilst also having two strokes during this time.

The treatment Kate describes how she was “treated like an idiot” as she was forced to spend days in a noisy department. 

“We know you don’t feel very well, migraines aren’t very nice” Kate was told.

“I had CTs, blood tests and a lumbar puncture, I was never admitted to hospital” 

Kate was left bed bound and due to a lack of diagnosis, when her job at the time began to ask when she could return, she couldn’t tell them. “I’ve never felt so poorly, but I had no idea why” says Kate.

Finally, Kate would undergo an MRI scan and reveal what she had really been going through.

“You’ve had three strokes Mrs Cooke”

“Three days later I was summoned back to the ambulatory care unit” says Kate.

“You’ve had three strokes in the cerebellum, we will refer you to the stroke team” she was told.

Overwhelmed by what she had been told, Kate describes being in a state of limbo “I didn’t know what this meant, I was part of a two person household, my wage was equal to my husband’s, how long will I take to recover? How will I recover? When will I get back to normal? Can I drive? When can I work again? Will I ever be able to work?”

For Kate, the panic had really started to kick in.

She was used to having an organised life, she had everything mapped out, from pensions to career progressions.

“We were really organised, and then complete chaos.”

Kate would then inform her work what had really happened: ”I called my work. They haven’t been in touch. Probably because the HR manager was off sick. I’ve had a couple of strokes I told them. I’m not sure what happens next, if I’m honest I felt completely alone.”

Reaching out

As Kate was struggling mentally, she reached out to the Stroke Association, finally speaking to someone who understood her situation and offered her advice with how to move forward in getting the help she needed.

“They told me to write an email to my GP explaining everything, discussing my issues and getting them to advocate for me. 

“It would appear I’ve not had my stroke properly. I’ve not been referred the right way to stroke services in my area. The email was written and off we went to the GP for some support. 

“She was amazing. Four weeks after my stroke and I was finally having a positive experience of the NHS. She spoke to the stroke team and they arranged an appointment for the next day. I thought it was getting somewhere…”

Through all of this Kate says she had not lost her drive and determination and that she would have to push herself.

Over the next six months physio and speech therapy, but she describes life as as “still really disjointed, as I’ve been retrospectively referred to the stroke team. 

“My constant questions. When can I drive again? When can I get back to work? Will I be able to do my job? Same answers came back each time. 

“Everyone’s different Kate, no two strokes are the same, you’re making really good progress.

“So, why would nobody talk about work? Five months had been gone and I was feeling a lot better than I had been originally. With the brain fog, fatigue, sensory overload and dizziness was still a huge issue, and despite no longer looking like death warmed up, I really felt disabled.”

Taking control of the wheel

Kate would take matters into her own hands, swapping her manual car for an automatic one, she got back behind the wheel, taking short journeys, but this would leave her feeling tired, even without the worry of switching gears.

A guide for workplaces on how not to deal with a stroke patient

Kate proactively kept in touch with her work, and was referred to occupational health.

During her appointment with occupational health she told them how much better she was feeling, despite having slight brain fog and that she’d be ok. She also spoke with her financial advisor and hoped she’d be covered by her critical illness cover, but was later informed she wouldn’t be covered.

Kate received further bad news on the arrival of the report from occupational health: “It was incredibly damning, and basically had me working for no more than 10 hours a week for the foreseeable future.

“I had run out of sick pay, and we’d be earning the equivalent of 10 hours a week, I was absolutely gutted. Financially, we were going to really struggle, I knew that if I wasn’t eligible for the insurance, there was no way I would qualify for benefits.

“Based on this, I went back to work and it was really difficult. I was working from home, they were too scared to help me into the office, it was up two flights of stairs.”

Kate noticed something was wrong, people had became afraid to tell her anything due to fearing she’d “have another stroke” and her boss had became really distant with her.

Kate then dropped the bombshell that three weeks later, she had been made redundant.

This was met by audible gasps by myself and other members of the audience, all with the same thought… how could someone who has been though so much and still managed to keep her place of work informed of her state of health, be treated so poorly?

New beginnings

Kate was left devastated by this, and although she received a redundancy payout, she says it “barely covered her lost wages” while she had been absent.

Left to find a new role, Kate applied for remote jobs, but had no luck. She did however, receive an invitation for a construction company 10 miles away from her house.

“I decided to go to the interview, because it was good practice if nothing else. It was full-time and on-site, it would be a real struggle.

“I was capable of doing the job with my eyes closed but the fatigue was my biggest enemy and travelling and concentration will be really hard. 

“The interview was good though, I got on really well with the interviewer, she was the HR director. She was warm and reminded me of me. 

“I decided to come clean about my broken brain. There was nothing to lose.”

“I thought she was amazing. She understood. She herself suffered with severe migraine and knew what it was like to suffer with fatigue, we were of a similar age and she was struck by my resilience.”

Kate received the call to say the company liked her and offered her the role.

“I have to come clean… I don’t think I can work full time. Could I do part time and maybe just work a few days? And then a couple of days from home as well?”

“They said yes and I cried tears if joy and relief. I’m doing okay, I’m three months in and managing the fatigue.

“My employer, my colleagues know about my condition and understand.

“Again I am contributing to the family purse, and I’m able to have fun again with my family free of financial fear.

“Life is good.”

Kate’s takeaway points

To conclude, Kate shares her takeaway point from her experience, saying “My takeaway point from all of this is that it’s not impossible, but incredibly difficult to advocate for yourself after stroke.”

“I feel if I received occupational support from my original employer they may not have made the decision they did. I felt that a young stroke survivors financial stability is the most terrifying of all the possible issues, and they need help to overcome these.”

“They were too frightened to talk to me about work and saw me as this fragile thing. If the shoe were on the other foot and I was dealing with a stroke survivor, I think regular contact would be key and keeping them part of the team would be essential.”

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