Ruth’s story: My visit to Sheffield Children’s

13-year-old Ruth has diagnoses of autism, anxiety disorder, as well as a sensory processing disorder.

 

When they were referred to Sheffield Children’s and placed under the care of the Gastroenterology service, they said to our services that they were feeling anxious about their upcoming appointments. Joanne Bowers, our Learning Disability Lead Nurse, worked with Ruth and mum Christa to create a plan which suited Ruth’s personal preferences as she had struggled with visits to hospitals before.

 

Christa explained: “Ruth copes better with minimal interaction, as few people as possible, and no distractions or sensory equipment. If staff held multiple discussions with her about the possibility of a PEG (percutaneous endoscopic gastrostomy) and then admission to the hospital, it would be far too much for Ruth to process.”

 

To help them prepare for their upcoming visits, Joanne encouraged Ruth and Christa to read about the supportive services available and gave them a health and communication passport.

 

This is a personalised record that provides staff with all the important information about a child’s support needs – their healthcare, learning disability, how they prefer to communicate.

 

Joanne also booked the Quiet Room in Outpatients for Ruth to wait in before her appointment. At Ruth’s request this was set up with no sensory or distraction equipment. Before the appointment the play specialist also worked alongside the consultant so that Ruth and Christa knew exactly what would happen. The consultant had originally planned to speak with Christa separately to Ruth, however Christa was able to explain to the play specialist that Ruth would not cope well with this approach so it was changed to suit them.

 

Christa said: “It honestly was the best experience at a hospital we’ve ever had. I’m so grateful to all the staff for making everything go so smoothly for Ruth, and for being so accommodating. Just the simple fact that everything they promised would happen, actually happened, is a huge thing for Ruth.

 

“When we got home she specifically asked me to tell you “Thanks for helping me”. It is a huge deal for her to feel able to believe and trust healthcare professionals, and her experience was so positive that she now feels calmer about coming in for her gastrostomy. It was such a relief!”

 

Thank you to Ruth and Christa for sharing your story.