Learning disabilities Back on track – bravely navigating Mike’s health journey!
Injuries can stop us in our tracks. For most of us, they’re minor and we learn to adapt to them for a brief time. But for people with learning disabilities, injuries and health changes can create fear and anxiety as they begin a journey of understanding, processing, and accepting what’s happening to their bodies.
Mike is a person we support with learning disabilities. He used to live at Roselea, our specialist autism service in Gloucestershire. In 2022, an unexpected health event meant a change in his circumstances, so he moved to Poachers Cottage, one of our specialist learning disability services located in Herefordshire.
Born with severe learning disabilities, Mike’s always required daily support. Despite his disabilities, which include epilepsy, autism, and dysphagia, Mike focuses on his abilities, taking pride in his independence.
One day, all this changed when Mike suddenly found himself immobile. Struggling to bear weight on one leg, his physical and emotional health quickly tumbled down a slippery slope.
Faced with months of medical investigations, Mike struggled to understand what was happening to him.
Looking over a hazy horizon, his future was awash with uncertainty.
But Mike’s support team at Roselea were a beacon of hope. Diving headfirst to get to the bottom of Mike’s issue, all hands were on deck and no stone was left unturned as they embarked on a quest to reclaim his health – so he could get back to living the fulfilling life he deserved.
Person-centred power
Mike joined the Roselea household at an early age. As he transitioned into becoming a young adult, our expert support empowered him to set sail on a journey of self-discovery; learning new skills, unearthing interests, and pursuing opportunities that were meaningful to him.
As well as his learning disability, Mike presents physical disabilities and needs extra support managing his health. As a person with epilepsy, he’s prone to seizures and requires 24-hour support.
Mike’s seizures often happen with no warning, putting him at risk of choking (dysphagia). Through expert training, his support team are equipped with the skills and knowledge to safely support him through seizures and administer essential medication.
For over 20 years, Mike’s thrived with our support, establishing a vibrant, meaningful life. Through person-centred care, his support team tailored their approach to meet Mike’s unique needs.
By spending quality time with Mike and getting to know him as a person, they discovered his passions and interests, understood his communication preferences, and drew a clear picture of how he wanted to be supported.
Suddenly, one day, Mike’s team spotted something wasn’t quite right. Walking gingerly, Mike was struggling to put weight on one of his legs. Being autistic means Mike struggles with verbal communication.
In this moment, his person-centred support proved extra powerful, helping his team discover what Mike was experiencing.
Within just 24 hours, they noticed a rapid decline in Mike’s health and had to act quickly. Facing a critical situation, Mike and his team were immersed in an unexpected event and set on course to getting Mike the help he needed.
An unexpected turn
Because of his autism, Mike finds disruptions to routine distressing, expressing this through challenging behaviours. His team knew this and understood the importance of honestly communicating what was happening to him.
Time was ticking, but Mike’s team spent time explaining the situation to Mike with picture cards, showing him images of a hospital and nurses. When they were confident Mike understood the journey ahead, they set off for A&E.
Sticking by his side, they knew Mike would be uncomfortable with waiting times at the hospital. Putting his needs and dignity first, they requested a side room for them all to wait in. But the hospital were unable to offer this.
Fortunately, knowing Mike as an individual and drawing on their specialist autism training, the team were prepared! Occupying Mike was key to his emotional wellbeing, so, they offered lots of interaction, ate snacks, and played with his favourite sensory toys.
Suspecting Mike might have injured his leg, the hospital sent him for an x-ray. When it was time for his scan, Mike’s team liaised with the hospital’s learning disability liaison nurse, who supported Mike and acted as a key communication medium as Mike can’t express himself verbally.
With the support of the nurse and his support team, Mike’s needs were prioritised and extra time was taken to show him the x-ray equipment, ensuring he understood what was going to happen.
In the past, Mike built positive relationships with health professionals and happily received medical treatment. Usually, he has time to prepare for appointments and process what might happen. This time, Mike was plunged into muddy waters and met with an emergency.
With the support of his team, Mike navigated his trip to A&E with reassurance and confidence. But his journey had only just begun, and Mike had more obstacles to overcome.
The long road ahead
Later that day, Mike’s results were in. His x-ray didn’t detect any injuries to his leg. With no conclusion to why he couldn’t bear weight on his leg, Mike was discharged home.
Returning to Roselea, his team identified a big problem. Mike was previously mobile, and his bedroom was on the first floor, accessible only by stairs. Now, he couldn’t manage to climb the stairs to his room.
Prioritising his safety, our team set up a temporary bedroom in the lounge. Making it extra cosy, they surrounded him with all his favourite things!
Tucking in Mike for the night, they were unsatisfied with the decision made by the hospital. Knowing something was wrong and the overall this was having on his overall health and happiness, they couldn’t settle that night. With Mike’s welfare at heart, they knew they needed to seek additional help.
The next day, our team at Roselea sought a second opinion.
Accompanying Mike to Cheltenham hospital, they maintained open communication in a way suitable for him, explaining what was happening and providing reassurance.
Mike was immediately admitted to hospital. Faithfully by his side, Mike’s team set up a rota ensuring a team member was with him at the hospital each day. Making him feel at home, they surrounded him with his favourite items from his bedroom. Still prioritising Mike’s needs, they arranged for a sensory area to be set up for him in a private room, helping him feel calmer and reduce his anxiety about being in hospital. Equipping Mike with entertainment, his team also set up Netflix on his television, so he could immerse himself in his favourite shows.
Mike was in hospital for seven months. Undergoing multiple tests, Mike also had physiotherapy, focusing on building strength in his core so he could stand and walk.
Despite all his tests, Mike’s doctors couldn’t make a diagnosis – his condition remained a deep mystery.
The journey home
When Mike was ready to be discharged from hospital, he’d regained some strength but experienced limited mobility. A long stay in hospital limited his opportunities to move his body. His leg muscles had weakened, his spirits dampened, and he became withdrawn.
Visiting him every day, his support team’s friendly faces boosted Mike’s mood on tough days and gave him the confidence to keep getting stronger!
Mike’s mobility changes posed a new challenge for him and his team. With new accessibility needs, he wouldn’t be able to return home to Roselea, where he’d lived for 22 years. Service Manager Kelly Watkins identified an opportunity for Mike to move to one of our other nearby services, Poachers Cottage, and worked with Service Manager Francesca Matthews to make this happen.
Always led by Mike, they allowed him to be discharged when he was ready, ensuring he understood he’d be moving to a new home. Being autistic, it’s important Mike has time to process and adapt to new environments and new people. Our teams at Roselea and Poachers Cottage put Mike at the centre of decision making, taking each step when he was ready.
Together, Kelly and Francesca put in place everything Mike needed to keep him safe and healthy in his new home, Poachers Cottage. This included temporarily transferring his key support team from Roselea to Poachers Cottage for his first few weeks as he transitioned.
During this time, they provided crucial training and insights into Mike’s extensive epilepsy support and complex needs. With his former support team engaged, Mike was empowered to build relationships with his new support team.
Reaching new horizons
Once Mike settled into Poachers Cottage, our team supported him to navigate the changes to his body. Even though his medical tests didn’t pinpoint a specific condition, he could no longer stand and walk on his own, relying on mobility aids to get around the house. Using two-person support, Mike’s team are always on hand to support him with standing and stretching his legs throughout the day – getting a break from his wheelchair and maintaining muscle tone in his legs!
Since his health emergency, Mike has experienced an increase in seizures and is now prone to being more tired than before. His needs change daily but his support team remain flexible and centre their support around Mike’s health, happiness, and safety, encouraging him to rest when he needs to and embrace his new lifestyle with confidence.
Part of maintaining his happiness is supporting him to thrive in the areas that are meaningful to him. For Mike, this is his family!
His parents and siblings mean the world to him, so, when Mike’s brother was due to get married, his dad reached out to Poachers Cottage, asking the team if they would support Mike to attend his brother’s wedding!
They knew how much this would mean to him. Committed to Mike’s best interests, they set to work making this happen! By continuing to support Mike in building strength and lifting his spirits, they proudly accompanied him to his brother’s wedding.
With two staff members by his side, Mike’s epilepsy and autism needs were fully managed, and Mike surprised his brother and the blushing bride on their wedding day!
Just 12 months earlier, Mike’s family didn’t think this would be possible. Beaming from ear to ear, Mike was front and centre with his family on this special occasion.
Thanks to the commitment and compassion of our expert teams at Roselea and Poachers Cottage, Mike successfully restored both his health and his self-esteem, so he could make this extra special appearance!
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