Will’s Story

“JAM CARE support Will to live a rich and full life”

Will was diagnosed with Friedreich’s Ataxia in his early teens. Friedreich’s is rare, inherited condition that progressively damages the nervous system, causing movement and sensory issues. Typically, it results in a loss of coordination, leading to slurred speech and problems with balance and coordination.

JAM began supporting Will in October 2021, after previous care providers struggled to meet Will’s needs. As a young man with a degenerative condition, Will was understandably angry, upset & frustrated, which was all magnified when he felt previous care providers were not enabling him to live the life he wanted to live.

Will is your typical guy in his 30s, funny, opinionated, likes a beer, loves good food. His hobbies include anything with an engine, he is a petrol head, especially motorbikes and cars. The JAM carers, and a few of the Head Office team, have spent many an afternoon at a track day or at a car meet up. Will is from a big family and loves spending time with them, and he loves getting out and about, be it to his favourite farm shop, a track day, visiting the family, a gluten free pint in a local award-winning pub all with his JAM guys by his side!

Will’s journey with JAM has not been all plain sailing. Getting to truly understand Will, his hopes, his needs, his motivations, his goals, and how we can best support him to live the life he wants to live has taken time and is still a process of continuous evolution.

To ensure we are doing the best by Will, and for Will, we regularly follow a model called “Stop, Start, Continue,” but this is not a one-off exercise, it’s regular and ongoing. The model does what it says on the tin. We work with him on what we stop doing, start doing, and continue to keep do.

• Sending me carers who aren’t part of my long-term team, as they are not invested in me or my future, and who I often have little in common with.
• stop sending me carers who struggle to understand my speech and who don’t cope during the tougher times.

• Building Will a robust team staffed with carers whose ages and interests were more like his, enabling him to feel more like he was out with friends, rather than carers.
• We trained all Will’s team in Crisis Prevention, so they are equipped to manage & de-escalate challenging situations and create the best outcomes.
• Deliver a tailor-made training course for Will’s team, so they truly understand him before they started working with him.
• JAM introduced a manager and 2 deputy managers (a day and night deputy), so Will has decision makers on most shifts.
• Created a 12-month events plan, enabling him to fulfil his goals and plans, including: Disabled Track Day, amazing days out: Ice Cream food show, trip to the tallest waterfall in Wales, Telford Night Rally, CAMRA pub of the year.
• We also support Will to keep fit, even sending one of his team on a nutrition course so they can build a plan with him and better support him to be healthy.

To support Will to run his life as he wants to enable him to follow his passions: motor racing, socialising, time with his family and to advocate for his charity – Ataxia UK.

• JAM is Will’s longest serving provider (2 years & counting).
• Will has a settled team of care staff that love working with him, and he has a sub 10% attrition rate.
• Will’s team are trained professionals equipped to support him, regardless of his mood, situation etc.
• Calls to “out of hours” on call have reduced by more than 80%.

ICB commented “I am so pleased, you’ve lasted longer than any of the previous agencies, great working with you!”