Child R’s Story

“JAM have given my son, and our family, a shot at a better life”

Our amazing Child R was diagnosed with a serious genetic muscle disorder as a baby, his condition which primarily affects boys, causes profound weakness, floppiness, and severe breathing and swallowing problems which requires regular ventilation

JAM began supporting Child R in 2024,  after they’d had 6 difficult years being supported by a care provider where they’d grown to accept a state where:

• They had a key person risks on a couple of great carers
• Management support was a thing of the past
• R’s own mother had become the Rota manager & main recruiter
• Nurse support was only available from the local hospital
• Communication between the family & the care provider had ceased years before
• In short, our Child R, and his family had accepted that “this was the way things were, and they should accept it, or risk moving to another provider who’d likely be even worse”.

Luckily for R’s  family, they met parents of a JAM client, who had a child with similar challenges, and they convinced them that there was a better way… read on to find out why, and how.

R is like any 8 year old, he’s funny, adventurous, curious, and he loves doing what every 8-year-old kid does, he plays Minecraft, he loves watching football, and he adores playing with his dog.

R’s journey so far, has been a challenge, but in his mum’s own words, “Now with JAM involved, we all see light at the end of the tunnel…I feel for the first time in years we might get to enjoy a few moments of normality as a family.”

To remedy the issues of the past 6 years , JAM listened to what child R and mum wanted using our “STOP, START, CONTINUE” method, proven to create success for the future, here is what they asked;

STOP

• Telling us it’s normal to have gaps every week in the care rota
• Telling us we don’t need a manager.
• Asking us to report our issues to carers, as they can’t fix problems.
• Expecting my mum to manage my care package.

START

• Ensuring I have a full team of carers.
• Ensuring my carers are qualified to look after me
• Treating my care team with respect and helping them.
• Ensuring I have clinical support from a qualified nurse.
• Involving me and my mum in my care plan.
• Asking me what I want to do.

CONTINUE

• To help my 2 main carers, I love them.
• To involve my mum in big decisions, just give her some support
• To let me play Minecraft

Within weeks, not only was R’s care transformed, but so was the life of his mum. No more worrying about rotas, chasing staff to see if they’d be coming on shift, having to put personal adverts on INDEED asking for staff for her son

• R has a settled team of care staff that love working with him, and are all trained, clinically comp, and skilled to support him
• Mum get’s more days and nights, but she no longer has sleepless nights worrying about cover and whether they can properly support her son.

R’s mum – “I never thought this would be possible. Finding out about R’s diagnosis was heart breaking enough, but the last few years have almost broken me. Thank you JAM for the hope you’ve given us all. xx”