Felixstowe mum seeks safe space bed for young daughter

Leila Mathieson, whose daughter Millie has severe autism and global developmental delay among other needs, has set up a fundraising page for a bed, as Millie was hurting herself against the bars of her cot.

As a result of her conditions, Millie often makes unpredictable movements, bangs her head during meltdowns, and engages in stimming (repetitive movements), as she is nonverbal and unable to communicate her needs.

The four-year-old has also recently undergone percutaneous endoscopic gastrostomy (PEG) surgery to place a feeding tube into her stomach to help with her feeding.

This means that she will catch the site of the surgery on the bars of her cot which causes her to bleed, and her mother says she is also prone to injuring herself.

Millie is now sleeping in her mother’s bed, but Ms Mathieson says that while many NHS workers have agreed that Millie needs a safe space bed, the occupational therapy (OT) team based at St Helen’s House in Ipswich has refused to provide a supporting letter.

Millie, 4, has severe autism and global developmental delay, along with other additional needs. (Image: Leila Mathieson)

Ms Mathieson said: “We desperately need a safe bed. Millie is out of routine and it’s causing her severe distress, and she has an inverse sleep rhythm, so we are all as a family very tired. She is up all hours of the night having meltdowns.

“I cannot apply for charity help without a supporting letter from an occupational therapist, but the team have said they do not support safe space beds because they see them as a restraint.

“They are not a restraint. She can get in and out easily and it will protect her head.”

The safe bed, which she says will cost at least £1,700 and will need altering for height, has padded walls instead of bars and a gap for Millie to get in and out.

She added: “The safe bed has padding to stop her hurting herself. The OT have advised us to just put a mattress on the floor, but how is that going to work? She is going to smash her head and cause herself injury.

The family says Millie “desperately” needs a safe bed . (Image: Leila Mathieson)

“If she had a safe space to sleep, she would feel more comfortable, and the surround should instantly soothe her, as they have done in hospitals.

“I just want to keep her safe. As a parent of a child who is disabled and with additional needs, not being able to keep her safe is the worst feeling in the world.

“I just want people to see it, share it, and donate if they can.”

To donate to the fundraiser, visit: www.gofundme.com/f/millie-to-have-a-safe-space-to-sleep-at-night

West Suffolk NHS Foundation Trust, which runs the children's occupational therapy services at St Helen’s House, said: "We aim to provide the highest quality and safest care for all our patients, and one of the roles of our occupational therapy team is to advise on the most appropriate equipment for children with physical disability and health needs.

“All recommendations for our patients are based on specialist clinical assessment of their individual needs.

"While the Trust does not prescribe safe space beds, we have signposted the family to other providers to seek further guidance and environmental assessment regarding their equipment needs.

“We welcome the opportunity to continue working with the family to best support our patient.”