Steve Hardy is a leading light in learning disability nursing, with numerous publications to his name, including a book about Covid-19 for people with intellectual or learning disabilities and/or autism.
But when the Oxleas NHS Foundation Trust nurse suffered a stroke, he would have to rely on others for his recovery.
“I was feeling quite breathless on and off the week before it happened,” Steve explains.
“I had to leave work one day because I was getting out of breath just walking upstairs.”
Steve awoke that Friday night paralysed on the right hand side of his body. In a fog of semi-consciousness, he fell back asleep, waking up again the following morning. His body now felt fine but he was struggling to communicate.
“I was supposed to be meeting up with my friend Claire, so I called to tell her that I wasn’t coming because I was feeling ill,” Steve says.
“In my mind, I knew what I was saying, but really I was talking nonsense about Madonna and people with Down’s syndrome. Claire contacted my brother via Facebook and he called an ambulance.”
On arrival at his home, the paramedics instantly suspected a stroke, so Steve was rushed to A&E. He found out later that his brother had been instructed to keep his phone to hand in case Steve deteriorated during those first critical 12 hours.
An MRI scan confirmed that Steve had suffered an ischemic stroke to the left side of his brain. And after making it through the night, he spent the next five days on the bed nearest to the ward station. Then he progressed and was moved to the other side of the room for two weeks.
Steve says:
“My communication was so poor. They put a sign up behind me in the by the bed saying, ‘sometimes when he says yes, he means no, sometimes when he says no, he means yes.’”
Steve had spent his entire adult life working in the NHS. But in those days following his stroke, he developed a deeper empathy for those on the other side of the curtain.
The experience would prove invaluable as he worked alongside people with learning disabilities, writing books to help the community.
Steve fondly remembers the occupational therapists and consultant who helped him over those difficult weeks. But his first experience of speech and language therapy was not so positive.
“The therapist treated me like a child, so I wouldn’t recommend her but the OT’s were brilliant. The consultant was so knowledgeable about stroke. He was amazing.”
Eventually, Steve was able to be discharged. But, unable to look after himself, he went to live with his mum. To support his recovery, Steve attended outpatient support with community OTs and a speech therapist. ThankfulIy, this one was a lot better.
“We did loads of tests and my speech improved pretty quickly,” Steve says.
“There was one test where she asked me to say as many words beginning with the letter ‘F’ as I could in one minute. When I started I made two, but by the time I finished my sessions with her, I’d got up to 10.
“After six or seven weeks I was able to go back to my flat but I wasn’t able to work yet. I was off sick for a total of nine months.”
While Steve’s communication was improving every day, there were times when he couldn’t see the right-hand side of his visual field. Understandably concerned, he went to his consultant who suggested it might be hemianopia.
The condition affects up to 10 per cent of stroke patients. An optometrist confirmed the diagnosis.
“They told me that it if it didn’t get better in three months, I’d have it for life, which I do,” Steve says.
“I don’t notice it most of the time, but if I go to (Kent shopping centre) Bluewater when it’s busy, I’ll be in panic with so many people going in front of me and all the kids rushing around, so I try avoid situations like that.”
Steve also developed sensory processing disorder (SPD) as a result of the stroke. Like hemianopia, SPD is an invisible disability, so it’s easy to forget that Steve is affected by it. It can be frustrating having to remind people about it, Steve says.
“It was really challenging back then. If was in a large meeting and other people were speaking, I might concentrate on all the other people surrounding me but wouldn’t be able to concentrate on the person talking because my hearing. That’s nearly gone now, but the sight is still a problem.”
Around a third of people who survive a stroke will experience depression at some point during their recovery. In Steve’s case, it hit him about six months afterwards as the reality of his situation started to take hold. The issue came to a head three months later on his return to work.
Steve explains:
“I was the nurse consultant, so I was managing about 140 nurses before the stroke. And I panicked. I couldn’t even manage even myself, let alone one nurse. So they were really helpful and suggested that we give it a year with extra support because they valued me in the post.
“I still found it really difficult going to meetings. Our monthly meeting was in this massive room about 30 people and I couldn’t concentrate what anybody was talking about.”
Steve’s employer created his current role to support Steve in his return to work. Now, he’s only responsible for himself. His employer also made adjustments his working area and Steve now sits in front of a small computer screen with a wall on his affected side.
These small adjustments have enabled the NHS to keep one of its shining stars while Steve continues to do what he loves and support those who rely on him.
“I’m really thankful to the NHS and my bosses for that,” he says.
“My reputation dipped a bit when I had a stroke. I was having emotional breakdowns at work. But I’m stable now. It took me seven years get to this place, because it really affected me emotionally.”
Steve is also thankful to the charities who have supported him on his journey. The Association for the Blind gave him tools to help him read and a white stick, should he wish to take on Bluewater on a busy day.
The Stroke Association has been especially supportive, Steve says.
“They came to see me and filled out a PIP assessment and I got a PIP payment for three years. I also went to one of their groups. The practice really helped my speech.
“My advice to anyone going through what I did is, don’t blame yourself. Depression affects near enough everybody who has a stroke but you can get all the counselling and the medical support you need.
“Give back if you can, too. I do sponsored runs and walks to support the Stroke Association because they really supported me.”
