PARENTS of children who have been supported by a Gwent charity for years, have come together to declare it as “essential” for their children with complex needs.
Sparkle, a children's charity designed for children with additional needs - based at the Serennu Children's centre in High Cross, Newport - is facing a financial crisis which could force it to make the difficult decision to review some of its 'essential' services.
Parents have come forward to talk about how much the services mean to them and their children with varied and complex needs.
Janine Webster’s son Elliott, 11, has been coming to Sparkle for almost four years and first attended before lockdown.
Ms Webster chose Sparkle after taking Elliott to mainstream football where she said: “he couldn’t follow the instructions, he found it really difficult, as he’s got a diagnosis of autism and ADHD (attention deficit hyperactivity disorder). He found it very overwhelming.
“His ADHD affects him more, he’s very impulsive, he’s hyperactive and he can be inattentive, so he does need to be kept on track with things. That’s one thing we do find that he struggles with more, hence why he found football quite difficult.
“Then we heard about Sparkle. It’s been very inclusive.“
Rob Jones’ daughter Efa, 11, has been attending the Serennu Centre since before the pandemic too.
Mr Jones explains: “She used to come when she was really young for the appointments and the medical side. The social clubs she’s been coming, I think, it’s been about five years with a break for Covid. It’s been brilliant.
“I know it’s a huge waiting list, it’s very difficult to get on which shows how important it is because the demand is huge. We’re very lucky that we’ve got a place, to be fair.”
Mr Jones emphasised the meaningful friendships that his daughter Efa has at the Serennu Centre.
“For us as parents, it means the world really, that she can have that experience. Children here get to be independent. All the children have got different and complex needs but most children crave independence. They don’t want to be stuck to their adults 24/7.”
Dean Lawler said his 14-year-old son Ellys’ life would be completely different without what he calls “essential services”.
Mr Lawler said: “there would be three days where we wouldn’t know what do. The friendships would drift off, I think. Some of the boys and girls in the clubs are in Ellys’ school so he sees some of them there. But it’s nice that he has his friendships outside of school as well whereas if he didn’t come here, he wouldn’t have them.
“He’d be stuck to his mum’s side in the house with nothing to do. It’s easy to come here and he likes coming here. He gets a huge amount from swimming, a huge amount from skills and sports. Everything that he loves about life, revolves around Sparkle.
“Ellys has got an older brother and he does his things and this is Ellys’ thing. It’s nice that this is his and no-one else’s.”
Nicol Rogers, a parent and parent rep, has been taking son Tian to Sparkle for three-and-a-half years.
Ms Rogers said: “Tian has an AAC device as he’s non-verbal. Staff at Sparkle all know to allow him to reply rather than rushing to get his answer.
“If I walked into a regular NHS building, which I have done recently, no-one knew about waiting for his reply.
“With Sparkle, we know they’re going to be safe. He gets to go to club with kids similar to himself, having playtime and making friends like children without disability can.
“They (the staff) keep disability at the forefront.”
Ms Rogers said the site does not just function as a leisure centre, which was confirmed by Chair of Trustees at Sparkle, Janet Kelly.
Ms Kelly said: “Serennu houses doctors, paediatricians, social workers, counsellors, occupational therapists, physical therapists and much more, in one space.
“We call this co-location, which helps to integrate services.
“So, an occupational therapist can go to a room opposite them in the Serennu building to find social workers if they have any concern about the child. This prevents disjointed care and it’s a quicker response time.”
Ms Rogers said Tian has “a dietician, paediatrician, occupational therapist, speech therapist, all in the same building”.
After seeing medical or social care professionals, Ms Rogers said Tian “knows he can do something nice afterwards”, after what can sometimes be an unpleasant experience for children.
Sparkle helps hundreds of children across Gwent per year and also provides support at Abergavenny’s Nevill Hall Hospital and Caerphilly Children’s Centre.
Ms Kelly noted a drop in fundraising, due to the ongoing impact of the Covid-19 pandemic.
“This has meant reserves have now fallen to such a level that it is required to cut its costs in line with Charity Commission guidelines.
“The charity needs to raise £750,000 every year in order to maintain the support and leisure services it provides to 935 children, young people and their families.
“But a marked drop in donations and grant funding over the past few years means costs are now in excess of income.
Mr Jones, Efa’s father, said the success of the centre lies with the staff and volunteers, and said: “Ultimately, we’re all experts on our own children, I know how to help Efa and stuff, but they [the volunteers] have to be able to deal with very different, complex needs and they have to be very adaptable.”
Mr Lawler echoed Mr Jones’ statement, and said: “The staff and the volunteers are what make the centre work, really.
“It’s the same staff every week as well, so there’s consistency for at least a full year. I guess some of them move onto other things after the year. But the majority of staff, they are the same every week, which is important for the kids.”
Ms Webster said: “When I started bringing him [Elliott] here, I loved it so much that I started volunteering in another club then, to help out. I started volunteering because I loved what Sparkle had to offer for the children.
Leisure services are charged per hour to provide two-to-one or one-to-one support to the children.
For example, a one hour skills session will cost parents £5.50, but the actual cost per head is reported to be £15.61 per hour.
A pricing list went out to parents in December 2023, which shows that the cost per head is much higher than what Sparkle charges.
Ms Kelly has announced the charity is holding a consultation which ends on Friday, February 9 2024 to assess the future of the leisure services.
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