I have been in hospital for 4 months now and all I really want is to be able to go home again.

Frankie, 15, will be discharged from hospital in Nottingham next week after 4 months being treated for Sensory Modulation Dysfunction. To be able to live safely in her own home, Frankie needs a sensory room which will provide a space for her to de-stress and manage day-to-day living. Frankie’s family do not currently have space in their house for sensory equipment and are facing the possibility of Frankie going into care.

Frankie has struggled with mental health problems for many years in addition to being diagnosed with Asperger’s Syndrome at the age of thirteen. She was finding it increasingly difficult to cope with mainstream school life, and in the run up to her GCSEs, she could only cope with one and a half days a week. Nonetheless, Frankie managed to achieve the results necessary for a place at 6th form, where she will be studying Law, Psychology, History and Japanese.

After her GCSEs, Frankie’s parents expected her stress levels to decrease so she could enjoy the long summer break. Frankie’s health continued to worsen over the following weeks, culminating in a visit to A &E as she feared that otherwise, she was going to physically harm those around her.

Frankie waited a week before she could be safely placed in an adolescent unit in hospital. Frankie has now been an inpatient for nearly 4 months whilst extensive investigation has been done to find out what was causing of her problems. Frankie was finally diagnosed with Sensory Modulation Dysfunction, which means she struggles to deal with sensory input properly and can easily be overwhelmed with the sights, sounds, smells and feel of everyday life.

Treatment involved giving Frankie regular access to sensory equipment. Doctors found that this therapy is vital for her to be able to manage her stress levels. Without a sensory room to help her de-stress, Frankie would not be safe to go home.

This week, Frankie was told she would be discharged next week as she is currently stable and finding it increasingly difficult being away from home. A few items of sensory equipment have been ordered, however, the family do not have a space to keep Frankie’s sensory equipment. As Frankie needs to be able to access the sensory equipment whenever she is unable to cope, which often happens at night, sensory rooms in off-site locations are not suitable.

Frankie said:

“I’ve been in hospital for 4 months now and all I really want is to be able to go home again. Originally I was told that I wouldn’t be coming home until everything was sorted but now that’s changed and I don’t know why. I know that I’d doing a lot better now but without the things I need, I’m worried that’s going to change and I’ll end up back at square one. I really don’t want to be in the place I was four months ago.”

Russ, Frankie’s father said:

“Frankie being in hospital for so long has had such a detrimental effect on the family as a whole that we are unsure as to how much longer we can keep things together. While we want Frankie to be able to be back home with us as soon as possible, she is very concerned that, with nothing in place to manage her condition, she will soon be back to where she was before she was admitted to hospital.”

Frankie and her family are in desperate and immediate need of a space to convert into a sensory room so she can return home and start living her life again. A sensory room would also benefit Frankie’s younger sibling who has not been diagnosed with ASD as of yet, however, she is exhibiting similar traits as Frankie did at her age, which is adding to the parents’ anxiety.

Nottinghamshire YMCA is running an appeal to raise the funds and donations to install a small outbuilding that will be available year-round for Frankie and her siblings. If you would please help us raise the money or donate your time, skills, talent, or supplies so that we can support Frankie and her family.

Please contact April Shacklock with your support.


tel. 0115 956 7600