Fayola’s Experience: “I need help, Minika needs help, but no one is helping us.”
Fayola, a Nigerian mum, lives in Thamesmead with her five children and husband, including 20-year-old daughter Minika.
Minika has Autism and several complex medical conditions such as epilepsy, diabetes, and kidney disease. Fayola must make sure Minika is kept warm as this, along with multiple medications, helps to manage her conditions. Despite her challenges, Minika is a happy young woman who enjoys going to a day centre, listening to music, and making Tik Tok videos.
In November, Fayola’s boiler stopped working leaving the family of seven without heating. “I called them (Hexagon Housing Association) in early November and told them the situation, I told them that Minika has serious medical issues and that this is urgent. They told me they couldn’t get someone out for weeks, not until December 8th,” Fayola told Healthwatch Greenwich in early January.
Despite repeated calls and explaining how medically vulnerable Minika is - Fayola was told nothing could be done and they’d just have to wait. “I was so tired of calling them again and again, they didn’t care about how vulnerable Minika is. They don’t consider her a priority,” said Fayola. “I was so frustrated and disappointed.”
She’s lost 8 kilos because she isn’t eating. If I showed you a video of her before, you’d be very surprised.
For weeks, the family had no heating. Her youngest son’s school got in touch, concerned he was falling asleep during class. Fayola explained he was too cold at night to sleep and went to school tired every day. The school contacted the housing association urging them to repair the boiler. The housing association didn’t respond.
Minika’s day centre reported she was shaking and keeping her jacket on. When Fayola told them she had no heating, the day centre contacted the housing association. The housing association didn’t respond. In the end, Minika became unwell.
”She was shaking because the cold got to her so badly, she wouldn’t stop. She came home [from the day centre] and I took her to the hospital [Queen Elizabeth] straight away. They admitted her because she was so sick. She’s so unwell she won’t take her medication; she won’t speak or respond to me or even move. This is not my daughter,” Fayola recalled “Usually she’s always talking, making videos on her phone, and listening to music. She’s lost 8 kilos because she isn’t eating. If I showed you a video of her before, you’d be very surprised.”
Minika has been in hospital for almost two months and Fayola stays in the hospital to look after her.
“I’m so angry because all of this has been caused by the housing association, they have caused this issue. If they had sorted this out, my daughter would not be here. We’ve been here for more than a month, she is angry and irritated, sitting here not talking or responding and dribbling. She’s never done this before. I’m not happy. I want my daughter well again. I can’t walk away, I can’t go anywhere, the rest of the children are at home wondering how she is, they are crying asking me when we’re going to be home. My husband is at work, so the older ones are watching the younger ones. He comes here after work to see her but that’s it.”
I’ve been waiting for a phone call or email [from Minika’s social worker] but nothing, no one has come back to me. I need someone to come in and sit with Minika so I can just have a break.
Fayola sleeps beside her daughter’s hospital bed in a reclining chair.
“It’s affecting me a lot inside. I’m not happy. I ask myself what’s happened to my daughter. There’s been no improvements. I am just stuck here for nearly two months watching her, looking after her. I am trying to keep her moving, I get her up and sit her on the chair. I don’t want her to get weak. I’ve only been home once in all this time because they [the ward staff] had someone come to watch her but they’ve told me they’re too short staffed on the ward to do that now, so I can’t have a break. I have to go to the canteen to buy food, even leaving her to do that is not easy and stressful, and it’s expensive paying for food from the hospital canteen every day. We don’t have money for that, we can’t afford it.”
“I’ve been waiting for a phone call or email [from Minika’s social worker] but nothing, no one has come back to me. I need someone to come in and sit with Minika so I can just have a break,” said Fayola. “I need help, Minika needs help, but no one is helping us.”
