Ashfield families' frustration over fight for autistic son's care

The family of an autistic seven year old are having to pay up to £800 a month for their child’s care, thanks to difficulty accessing NHS care.

Riley Wilson, aged seven, was diagnosed with severe nonverbal autism when he was three.

Riley and mum Melanie

Riley and mum Melanie

He has since been diagnosed with ADHD, sensory processing disorder, speech apraxia, anxiety, sleep disorder and PICA (persistent eating of inedible objects), meaning he is a child with complex and severe needs.

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Parents Melanie and Mark are now paying privately for the care he needs, due to the struggle to get him seen on the NHS.

Since September 2018, parents of children with autism have to refer their children though a service called Small Steps, before they can see a paediatrician.

Small Steps offer support and interventions by way of parenting courses, to families of children who display challenging behaviours.

Mark, Melanie and Riley

Mark, Melanie and Riley

Parents must take courses about handling children with behavioural issues before their child can be seen by a medical professional.

Melanie Wilson, 33, said: “Our GP can’t refer Riley for services he needs, such as occupational therapy, so we have to see a paediatrician.

“In order for Riley to see a paediatrician to prescribe the care he needs, I would have to attend different parenting courses at Small Steps, which could take up to 18 months to complete.

“At the end of the courses, the service looks at if the child still needs to see a paediatrician, and only 50 percent are referred."

Riley during equine therapy

Riley during equine therapy

Melanie, from Jacksdale, says the system is ‘frustrating’, and that in the meantime, Riley is not getting the specialist care he needs.

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Small Steps has received praise from parents for providing 'informative and helpful' courses that help with children with autism, including training in non-violence resistance and autism.

Melanie says that the service is a valuable resource for many parents, but it should not be a barrier to a child seeing a paediatrician.

Melanie added: "Optional workshops for parents of children with challenging behaviours are a great thing, especially for parents of children who are newly diagnosed, but in the meantime, your child isn't seeing a medical professional.

"The fact that I couldn't get anyone to see him made me feel as though I was making it up."

"I know of one parent who had to take three six-week courses, and I know many parents have ended up paying for private therapy."

Melanie and her husband Mark have given up their jobs to care for Riley and his complex needs, which makes paying up to £800 a month for his care even harder.

Melanie added: “We managed to see a specialist paediatrician within 48 hours, as we were paying.

“He said Riley is one of the most severe, complex children he has seen, and also diagnosed him with ADHD.

Riley's paediatrician referred him to occupational therapy, and specialist speech therapy.

He now attends equine therapy once a week.

Melanie said that the therapy makes a world of difference, adding: "I've never seen him so free of himself, he got so much out of just one session."

Melanie and Mark have set up a charity called The Riley Foundation, which funds sensory equipment for autistic children in mainstream schools.

Melanie also writes about her fight to get Riley access to the services he needs online, on a Facebook page called The secret life of Riley.

Through the page, she has mentored other families that find themselves in the same situation, and has built a support network of families.

Melanie added: "There are just no services left, and families are left in a black hole, not knowing where to turn.

“Riley’s fortunate that we can be home and care for him, but our savings aren’t going to last forever.

“It’s just really sad for the children, they are being neglected by this system - if us parents neglected our children this way we would be up in court.

"Parents often don’t know where to turn or have the confidence to say this isn’t right.

“Parents just meet barrier after barrier, which all impacts mentally on them."

Kerrie Adams, senior public health manager at Nottinghamshire County Council, said: “The Small Steps service is an important part of the overall assessment process for children with complex behaviours and not only provides parenting workshops, but also specialist practitioner assessment, one to one support, drop-in workshops and an advice and support line.

"We are sorry that there are currently waiting times for this service and are working alongside the service provider to resolve this.”

You can find out more about The Riley Foundation here: facebook.com/therileyfoundation123/
You can read Melanie's blog here: facebook.com/thesecretlifeofrileyx/