Parent group’s vision to share wisdom and support

Debbie Jansen (centre) whose 11-year-old son Ben suffers with autism, has started a new venture to p

Debbie Jansen (centre) whose 11-year-old son Ben suffers with autism, has started a new venture to provide support to parents who have a child with austism.Picture: James Bass - Credit: Eastern Daily Press © 2015

Dissatisfaction with the provision for children with autism in the area has led to one mum setting up a support group to bring parents together.

Debbie Jansen's 11-year-old son, Ben suffers from autism and had been receiving treatment at the Newberry Clinic in Lowestoft Road. But the retirement of the paediatrician he had been seeing has caused problems not only for Mrs Jansen but for others too.

'We had been through five different paediatricians until we found the right fit,' said Mrs Jansen. 'And by far the doctor we ended up with was the most professional and sensitive out of the lot.

'At first, parents received letters telling them their case had been passed over, but then about two weeks later some appointments were cancelled completely. It's incredibly frustrating because these parents are in need of guidance, strategy and medication for their children, but some are now going to have to wait until next year to see a doctor.'

Out of desperation, Mrs Jansen started meeting up with two friends whose children also had autism, so they could share stories and try and help each other with solutions.

'It went from there in February and here I am now with three full support groups, and over 45 families signed up, that's how Slice of Advice was born.'

Mrs Jansen now helps lots of parents looking for help in Great Yarmouth, Martham and Norwich.

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'It all depends where the hotspots are, where I'm needed,' she said.

Slice of Advice brings together parents but also holds talks from a variety of professionals, such as occupational therapists, sensory play therapists and the county council, to give advice on what could help a child.

'We're making so many contacts, and that's feeding back to parents who are really benefitting from the help,' Mrs Jansen, 45, said.

'But really we're still in the process of setting this all up. I'm running it voluntarily but it is effectively my full time job.'

Mrs Jansen's vision is for parents to help each other to help themselves, by offering words of wisdom from different stages, from diagnosis through to everyday coping methods.

'All these children are different,' she said. 'So finding the right treatment is like finding the right key to unlock a door.

'It's very much an environment where parents can come and not be judged, we're just there to share stories and try to help.'

A spokesman for James Paget University Hospitals NHS Foundation Trust, under which the Newberry Clinic falls, said: 'A senior member of staff based at the Newberry Clinic, which provides community paediatric services, will be retiring in the New Year. As a result, we are in the process of re-arranging appointments for some of our patients and would apologise for any inconvenience caused.'

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