Case Study Of Patient With Full-Time Companion Carer

Johanna's Story

Going to university is all about newfound independence. New experiences, new friends… and let’s be honest – partying. Who wants to do any of that with their parents in tow? Johanna felt like this; poised to study a three year bachelor’s degree in geography, she didn’t want to limit her choices by living at home. The challenge was how to make the most of this new freedom, while recognising that cerebral palsy means she needs more support than your average fresher.

At first, her parents felt anxious and a little sad about their nineteen year old daughter leaving home, as most parents do – but moreso because of her condition. Yet with Johanna’s liberty and wellbeing the clear priorities, they took a brave decision to make some radical changes, at what felt like a natural juncture. After some very grown-up discussions, the family invited Avanta Care to explore some options with them. The family weren’t sure what kind of care was out there, all they knew was that they didn’t want anything standard or intrusive – because Johanna’s situation was as unique as she was. So we listened. We had a think about how we could help, then came back with a proposal. The recommendation Johanna went for was to have an informal, full-time companion carer accompany her during university term time. First, Johanna would meet a few candidates to see how they got on, then whoever she chose would join her at university. After careful thought, she picked a bubbly lady called Lucy. September finally arrived, and Lucy (who’d been staying at the family home so they could get to know each other better) accompanied Johanna in the life-changing transition to university. It was emotional for Johanna’s parents, but a whole lot easier thanks to the peace of mind they took in her flourishing companionship with Lucy. The pair had separate rooms in the same halls, but Johanna could always reach Lucy via a private intercom. At any time of day or night, Lucy was only ever a few doors down. On a typical day, Lucy’s job is to help Johanna live as independently as possible, and get the most out of university life. She helps her get around campus in a wheelchair, master new study skills in the library, and take notes – which Johanna isn’t quite fast enough to record on her own. After lectures, Johanna transcribes the notes herself onto her laptop, learning at her own pace. Lucy quite enjoys the challenge too – one reason they get along so well is their shared curiosity in people and the planet. Then there’s the partying. The two friends go out to the student union together most nights, meet course mates and indulge in all the fun and capers every fresher can expect. Johanna feels fantastically empowered, because whatever she wants to do – fresher’s week, balls, gigs, societies – she can relax knowing Lucy’s always there for her. Lucy enjoys these events too because they socialise as friends, and friends look out for one another and make sure they get home safely. Lucy has an appetite for life that’s really rubbed off on Johanna – her parents notice that too. They think Johanna is making a perfectly natural transition into adulthood, in the way they always hoped she would – on her own terms. Technically, this isn’t what most agencies would call ‘live-in care’ because it doesn’t fit the mould. But then who does? At Avanta Care we realised long ago that there’s no such thing as one-size-fits-all. Special people need special arrangements – that’s why we worked with Johanna and her family, her healthcare specialists and the university, to design a package that’s truly flexible, informal and bespoke.

Two years into her course, and Johanna is loving every minute of it. She’s on for a 2:1 and already has plans to study for a master’s degree in environmental conservation. Her tutors say she’s a model student, but Johanna, modest and mature, says that’s all been made possible by a model carer.