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Winter 2019Interview with Carole Kelly

Current Woman of Rochdale, Carole Kelly, has an ambition to make the borough more accessible for children with disabilities and/or complex and additional needs. She spoke to Katie Davies about local group ‘Jolly Josh’ and her vision for the future.

Jolly Josh is a registered charity in Rochdale which enables families with children with disabilities and/or complex or additional needs to meet, exchange information and create social networks with others in similar situations.

At weekly sensory themed sessions, currently based at Springside with Hamer Learning Community, a variety of professionals, services and charities connect to provide support to families.

This vital local charity was the brainchild of Carole Kelly, from Wardle, who wanted to ‘organise a group with no questions asked, where everyone could feel included and not isolated, and where we all understand what one another are going through’.

In April 2017, Carole became the full-time carer for her son, Joshua Kelly, who, at the age of six months, was found to have ‘extensive brain damage’ due to the genetic condition Mitochondrial Disease, which causes mutations in mitochondria, vital to every cell in the body.

A week after his first birthday, Joshua’s health began to rapidly decline and in May 2017, Carole and her husband, James, were given the devastating news that their son had ‘weeks, maybe months, until he found peace’.

“The idea of Jolly Josh two years ago was pure imagination”, said Carole.

“A chain of events would lead me to realise that there was a huge gap in the system; the solution would become Joshua’s legacy.

“When my son became ill, it was an incredibly dark time. As a ‘stay at home’ mummy to both my babies (Joshua and his big sister Sophie), we wanted to be out and about, making memories.

“I took Joshua to many baby groups and never met another disabled child or a child with complex medical needs. It became hard to go out when people asked, ‘what is wrong with him’.

“I attended an information day event in Rochdale for parents and carers of disabled children with the hope to find services that would help Joshua and our circumstances, but sadly, they were minimal. We already had a play worker and there was nothing else available as he was under four.

“Finally, I met a mummy at a sign language group whose daughter was also fed through a nasogastric tube – the first child (other than Josh) that I had met with one. I was so excited that Josh would know that he wasn’t the only child to be different and we had so much in common to discuss. That’s when I realised this interaction was what I needed.

“I knew then that Jolly Josh was going to make an impact.”

Carole approached Joshua’s care team with her ideas for a local group that would enable children with disabilities and their families to ‘Connect, Support and Thrive’, whilst inspiring inclusion and overcoming isolation.

“Unfortunately, for me, health visitors, nurses, GPs, etc. were not able to connect families due to confidentiality policies,” said Carole, “but Jolly Josh would finally enable this to happen…”

Joshua sadly died on 27 August 2017, just one month before his legacy, Jolly Josh, was due to begin.

“My whole first year of bereavement was spent setting up Jolly Josh,” Carole said.

“It was something that I needed to develop to help me as a coping mechanism, distraction and to create a legacy for Joshua, in addition to providing a service to myself and others that was previously unavailable.

“Now, I am incredibly proud of what we have achieved over two years.”

Jolly Josh was awarded charitable status in April 2018, just seven months after opening. In May 2018, Carole was shortlisted for a Greater Manchester Health and Care Champion Award and in April 2019 she was named Woman of Rochdale.

To mark the second anniversary of the charity on 22 September 2019, a pirate themed family fun day was hosted at Callaghan House, Heywood, raising £1,800.

Speaking of the benefits Jolly Josh has brought to the borough, Carole said: “Our families provide each other with guidance; children are making friendships and thriving, and their siblings gain support too. The children learn that we are all different and that’s what makes us special.

“Going to clinic with a poorly child is extremely difficult, even for the most confident of people, as emotions are heightened. When professionals visit families at Jolly Josh, they are amongst their peers; the children are entertained playing and the experience is far less formal.”

Carole is now set on bigger plans for the future, including accomplishing her dream of Jolly Josh having its own venue and building an accessible park for those with disabilities and/or complex additional needs in Rochdale.

“There are still many challenges facing disabled children and their siblings and families, for example, the need for public changing places and the need for more accessible playgrounds in parks for those children that do have complex medical needs.

”We have set up Jolly Josh and I have provided this service, but there are still so many gaps that we need to work on, tackling a lot of the services that are missed.”

In Jolly Josh’s first year, 63 families visited the sessions along with 23 professionals.

She concluded: “These numbers speak volumes of how much this group was needed; it wasn’t just me feeling the need to reach out – the gap was there.”

Carole is currently on maternity leave from her job as a teacher of children with profound and multiple learning disabilities after Joshua’s younger brother, Oliver was born in July 2019.

Carole hopes she can encourage Rochdale and other boroughs to fill the gaps that she experienced with her family.

Jolly Josh sessions currently run on Thursday mornings, 9am – 12noon, at Springside with Hamer School.