Posted on: 20 Sep 2023
Eight-year-old Francesca Pykett suffers from a rare genetic condition called Acrodysostosis, which means she has had to undergo many hospital investigations and procedures in her short life so far.
Because of this, Francesca, developed a fear of hospital treatment, and had to be sedated for routine blood tests, MRI scans and other procedures. This was traumatic both for Francesca and for her mum, Kimberley Brown, and dad, Alex Pykett.
Thanks to funding through Nottingham Hospitals Charity’s Big Appeal, a new play specialist MRI pathway was created at Nottingham Children’s Hospital, with the aim of using fun and play to reduce the number of young patients undergoing general anaesthetic for non-invasive MRI scans.
The scheme has been a game changer for Francesca and her family, and enabled her to undergo her first ever scan without anaesthetic – meaning a less distressing experience overall for Francesca and her family, as well as reducing the time taken and enabling more patients to be seen per day.
Mum Kim explained: “We knew something wasn’t quite right when Francesca fractured her leg at 18 months old, from just a small fall from standing to sitting. The GP also noticed she had a flat nose, which can be associated with a genetic condition called Acrodysostosis, so referred her to hospital.
“She was finally diagnosed with Acrodysostosis at the age of three and underwent many genetic tests, hearing tests, brain scans and other investigations, and ended up seeing a total of 27 consultants.
“Because of everything she’d been through, all the tests and the surgery, Francesca became scared of doctors and hospital. She stopped eating and had to be gastronomy fed, meaning she was fed directly into her stomach.
“Her anxiety is so high that she now has to have general anaesthetic just for blood tests. Even administering the general anaesthetic was traumatic, until the play specialist team became involved.”
Francesca and Kimberley were introduced to Nottingham Children’s Hospital play specialist Jamie-Lee Phillipson, who worked with them to calm Francesca’s anxiety around tests and treatments, and explain things to her more clearly.
As part of the play specialist MRI pathway funded by Nottingham Hospitals Charity, Jamie-Lee worked with Francesca when she needed an MRI earlier this year.
Kim said: “Because of her age, and her extreme anxiety around hospital treatment, Francesca previously had to be put under general anaesthetic for MRI scans. However, in January 2023, Jamie-Lee’s work with Francesca enabled her to undergo an MRI awake for the first time.
“Jamie-Lee came up to the ward in plenty of time before her allotted time slot, re-introduced herself to Francesca, explained where we were about to go and what they were going to do, and asked her if she wanted to see her magic kitten scanner first.
“This was the happiest Francesca had been for the past 48 hours, so we headed off down to the MRI with Jamie-Lee for the first time without our child being wheeled on a bed ready to have the mask. Jamie then took Francesca to the toy kitten scanner, and got her to put the toy into the scanner, explained why and how he was going in there and it would be the same for her. They then went and chose Frozen to watch as her DVD of choice whilst the scan was happening, and at this point Francesca was calm, if not excited.
“Once we got into the actual scanner room, Francesca's excitement soon dwindled back into anxiety, she was scared of the scanner and the thought of laying down on the bed, let alone it moving into the scanner, was too much. However, Jamie-Lee then got up onto the bed and physically showed Francesca how it was going to look and feel and how she needed to wear the helmet in order to watch Frozen.
“Hesitantly Francesca lay down into the scanner and once she realised that she was safe, Jamie-Lee was one end of the scanner and her parent at the other, she relaxed and they managed to do the scan without needing to be put to sleep. Francesca was so proud of herself, as were we, and we were so grateful that Jamie-Lee was there to help.”
Francesca with her family
Francesca’s dad Alex said: “Jamie-Lee took Francesca down to the MRI suite, explained everything and showed her how it all worked. Doctors understandably just don’t have the time to do this for every child, so having the play specialist team there to help has made a huge difference. She’s now even helping Francesca work towards having blood tests without the need for general anaesthetic. Jamie-Lee has been an absolute godsend for us.”
The effects of the play specialist scheme have been lasting for Francesca, who had to return to Nottingham Children’s Hospital for another MRI earlier in the year.
Kim said: “Francesca got admitted to hospital needing an emergency MRI and she absolutely smashed it! Jamie-Lee wasn't at work and although we went down with a play therapist, she didn't need to do anything. Francesca got herself onto the bed, asked to watch Frozen and did the whole 15 minutes of MRI herself without moving a muscle or even hesitating! And that in itself shows how powerful play is.”