Mum 'just existing' in 'unsuitable' home

A disabled mum-of-four said she is "living in a nightmare" after an ongoing six-year wait for a bigger house. Amy Trousdale, from Halewood, has used an electric wheelchair since being diagnosed with hypermobile Ehlers-Danlos syndrome, external (EDS) in 2019.

The rare condition means she suffers from joint dislocations "daily" and is unable to walk or bear any weight. Amy lives in a three-bedroom house managed by Torus, a Merseyside-based housing association, where she shares a bedroom with her two youngest daughters, aged five and six.

She claims her home is so small she can only use her wheelchair from the stairs to the couch and is confined to her bed most of the time. The 42-year-old told the ECHO: "It's not nice for the kids to see mum in bed all the time.

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"It impacts my ability to look after the kids' wellbeing as well as my own. I haven't cooked in this house since 2019 because I can't get in the kitchen in my wheelchair."

Despite being on the Property Pool Plus scheme for five and a half years, Amy claims she "doesn't get a look in". She said she has been "promised the world" by Torus which, in six years, has widened the outdoor path and fitted a small handrail in a downstairs bathroom - which Amy says she cannot use because her wheelchair won't fit through the doorframe.

Amy said: "Everything I've asked for, whether it be pre or post-diagnosis, I've never had any of it done. The only thing they've done is widen the path at the side of the house so I can get to the wheelie bin."

Amy claims her situation is "desperate", and worries if she'd be able to escape in the event of a fire at her home. She said: "If my house went on fire I would die. I can't get down the stairs or out the bedroom on my own. I have to get up and down the stairs on my backside because I've been told it's too dangerous for me to get a stairlift with my condition."

Torus said it "remains committed" to finding the right home that meets Amy's needs and is referring the family to Merseyside Fire and Rescue Service to ensure they have the best possible fire safety support.

For the last five and a half years, Amy has been trying to get back to Halewood where her family live. She said: "I live in the middle of nowhere by Alder Hey Hospital. I'm on my own up here. There's never a property available in Halewood and if there is, I'm millionth in the queue to get it."

Amy, who was a dancer "all her life", said her ligaments have had so much use over the years they have become loose, causing frequent dislocations. She said: "I was the one who could put my legs behind my neck and do the weird thing with the arms. That was my party trick.

"Being flexible and hypermobile is helpful until it's not. My ligaments are that loose they don't hold my skeleton in place. It's stupid things, ripping a binbag off and I've dislocated my thumb, or holding a four pint of milk wrong and my wrist is out. Reaching up for something just out of reach and my shoulder has gone. It's silly little things."

Amy recalled a time she had to "smack her leg against the wall" to get her dislocated knee back into place. "My sister-in-law at the time said she'd never heard a noise like it," she said.

She claims Torus has told her she "needs to learn to manage her expectations". She said: "I've got nothing for my kids. There's no room for anything. But I get told it's okay because I've got a house.

"I don't know what I'm meant to do. I'm desperate. I'm in pain every day. I'm not living in this house; I'm just existing. The kids are getting bigger and the house is getting smaller. I'm completely stuck."

Amy's condition is degenerative, meaning it will worsen with age. She said: "I've gone from being able to do everything all my life to then five, six years ago, being told it will only get worse with age. They don't know what to do with me. It's just a nightmare.

"I've got a lot of guilt. My kids aren't thriving or growing. They're brilliant kids, all four of them, but each of them has their own struggles in some way. The younger two have severe separation anxiety. They all have a lot of worry and that gives me a lot of guilt because I don't want them worrying about me."

Group Assets Director at Torus, Margaret Goddard, said Torus "remains committed to finding the right home that meets her needs". Ms Goddard said: “We have been working with Ms Trousdale to find the best solution that meets her needs and her family’s overall wellbeing.

“While the Fire Safety Order does not apply to houses in the same way it does to properties such as high rise blocks, we are referring the family to Merseyside Fire and Rescue Service to ensure they have the best possible fire safety support.

“Liverpool City Council is responsible for adaptations but these have not been made to Ms Trousdale’s current home because a new downstairs bedroom-bathroom extension would see her lose the living space and even if this work was carried out, the home would still be overcrowded and unsuitable long-term.

“To help, Ms Trousdale’s Property Pool Plus application was changed to an Urgent Band A priority in May last year. We completely understand why the family wants rehousing in the Liverpool 26 area so there is a support network close by, but we do not own any properties in this area.

“Unfortunately, we own very few properties in Woolton and Hunts Cross - two other areas Ms Trousdale has identified - and because those we do have are so popular, they very rarely become available.

“As a result, we have urged Ms Trousdale to widen her areas of choice so a suitable home can be found and have also assured her that if she expresses an interest in a property we will see if we can make any necessary adaptations. We remain committed to finding the right home that meets her needs.”