A disabled London mum says she has to clean herself in the living room after using the toilet and hasn’t showered “in years” because her landlord refuses to make changes to the family flat.
Sara - not her real name - claims housing association Notting Hill Genesis (NHG) are “gaslighting” her and that the family-of-three are being unfairly treated. NHG refutes any suggestion of residents being treated differently and claims to have systems to ensure this does not happen.
But mum-of-two Sara says she has been back and forth with them and Kensington and Chelsea Council for a decade about having her flat adapted - but keeps landing “back at square one”. She feels that NHG is not taking her case seriously.
“It’s difficult because you feel like you’re getting somewhere with emails and phone calls but then they change officers and then you’re back at square one,” the 38-year-old said. Sara’s chronic back pain leaves her bed-bound most days - and struggles to get things done in a small and crowded apartment.
Sara has to go to the living room to clean herself after using the bathroom (Facundo Arrizabalaga/MyLondon)She can’t lift her legs to get in the shower-bath so has to use damp rags to wash herself. When Sara uses the toilet she has to shout at her kids to look away - as she passes by their room to get to the living room, where she has to lie down to clean herself. She also needs to sit or use a reacher when cooking, MyLondon reported.
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When cleaning herself after a bathroom trip, according to a letter her sister sent to NHG in 2020, Sara has to lay next to a bin for dirty tissues before she can gather enough energy to get up. There are also no guardrails on the steep front steps, which the West London mum said has made it hard to get out and is a fire risk.
NHG offered to install rails along the wall, but Sara said the steps were too narrow for that to work and rejected it.
Sara said: “I can’t do anything for myself. I have to rely on my carer for everything. I don’t get to do normal mother and children stuff. And not being able to wash myself is disgusting. You’re not clean and you’re worried if someone can smell you or if they notice something [on you]. It’s like you’re battling your own demons in yourself.”
Sara says she "hasn't showered in years" due to the failures to improve the flat (Facundo Arrizabalaga/MyLondon)Sara said she’s been pleading with Notting Hill Genesis to make adaptations to the flat since 2013 but said she’s been largely ignored because her landlord would rather move the family into larger, more suitable accommodation than make any changes. The mum-of-two said she’s had Kensington and Chelsea Council conduct four occupational therapy assessments, each highlighting the need to move the family into suitable accommodation and to make adaptations.
She agrees with needing to move but says with suitable housing stock in Kensington and Chelsea in short supply, the family have nowhere to go. She’s also reliant on her older sister, Malika, for help and is worried moving out of the borough will isolate her.
She also claims Notting Hill Genesis has refused to carry out adaptations on new properties she’s found online. The housing association said it’s Kensington and Chelsea Council’s responsibility to recommend what works are needed and up to both of them to split the cost.
The council said anyone requiring major adaptations to their home needs to confirm their intention to remain living in the property for at least five years. Notting Hill Genesis also said it has offered Sara properties in Notting Hill and Hammersmith and Fulham but Sara says they’ve all been unsuitable.
Sara keeps ending up "back at square one" when trying to push the council and NHG into action (Facundo Arrizabalaga/MyLondon)Malika, who left her full-time job as a travel agent to take care of her sister and elderly mother, said it’s been tough seeing her sister struggle. She said: “It’s hard. You don’t want to see your sister like that but what can you do? If she was left to her own devices they [social services] would have removed the kids because she wouldn’t be able to help them”.
Malika said dealing with Notting Hill Genesis has been like “hitting your head against a wall and it isn’t a very soft one”. She said: “They say one thing in an email and then say something else in another email two weeks later that’s contradictory.”
The 42-year-old has been helping her sister with daily shopping chores, getting her medication, or picking her kids up from school. Some days she also washes her sister and makes sure the kids are scrubbed up, too.
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In a 2020 letter to Notting Hill Genesis, Malika said: “I never thought that as a 39 year old I would have to look after my baby sister who is 35 years old to this extent and I see it in my sister’s eyes too. She feels like she is a burden but with no help from anyone else we only have each other.”
There is also no privacy for Sara’s teens, Layla, 14, and Zacharia, 10, who have to share a room together. In a separate letter to Notting Hill Genesis last year, Layla said it was “uncomfortable and embarrassing” to share a room because she is entering puberty and that they once had to sleep with a wooden board covering their window after it was smashed to pieces.
She wrote: “I can’t have any of my friends over because I’m ashamed of the house. I can’t even have a normal childhood, like I can’t have a bike because my mum can’t take it up the stairs because they are steep.” Layla added: “I see my mum struggling everyday with her hygiene as we don’t have access to things we need. I see my mum try to keep it from me and my brother but I’m old enough and notice how much struggle she’s going through.
“Sometimes I wish my mum didn’t have the medical needs [sic] otherwise we would have moved sooner just like my friends did.” Zacharia said he’s worried he might be bullied by friends if they saw the state of the flat. He wrote: “At night, I sleep in a toddler bed and my feet dangle off the bed as there is no space to get a new bed.”
Sara took Notting Hill Genesis to court and reached a settlement but remains in the flat, which she said is full of mould. At one point, she complained about being electrocuted by the light switches.
Notting Hill Genesis said it was unaware of Sara being electrocuted but said contractors had carried out repair works in late January and would like to do more when Sara temporarily moves out. Notting Hill Genesis had contractors try to make adaptations to Sara’s flat but were refused entry.
Sara has denied this, saying she has never refused anyone entry to carry out works in the flat. A Notting Hill Genesis spokesperson said: “We categorically refute any suggestion that any of our residents are treated differently and have robust systems in place to prevent that from happening.
“We recognise the challenges that Sara is facing in her current home and are doing all we can to support her in getting any aids and adaptations required. All parties agree that a move would be in the best interests of Sara and her family, which is why he is in the highest banding for a transfer.”
They said Notting Hill Genesis would continue to put forward properties in the local area that are suitable and that Sara can also access the Locata transfer service to search for flats herself. They added: “Family-size, suitable properties within Kensington and Chelsea are already in short supply.
"Sara has provided a short list of streets she would be willing to live in, which limits availability further. Offers of a move to nearby Notting Hill, or Hammersmith and Fulham, have so far not been accepted.”
Notting Hill Genesis said it would discuss the potential for a shower and other adaptations in Sara’s flat with Kensington and Chelsea Council on the basis that any imminent move is unlikely due to properties in the streets she would prefer becoming available very rarely. They said they have offered the family a temporary move to a two-bedroom home just 180 metres from where she currently lives, which would allow Notting Hill Genesis to complete some of the requested repairs and hopefully make any aids and adaptations.
They said a housing officer has been working with Sara since May 2022 and continues to speak to her on a weekly basis to discuss her options. The spokesperson added: “We have a very good relationship with the local authority and where aids and adaptations are necessary we work together to make that happen.
"This particular situation is complicated by the fact that everyone agrees a move is in the best interest of the family, but given that no imminent move is likely we will speak to the council to see whether we can ensure adaptations are made to Sara’s current home”. A Kensington and Chelsea spokesperson said: “Like all London boroughs, the Council is experiencing unprecedented housing pressures.
"We have more than 3,000 households on the housing register; over 1,000 new homelessness applications in the last year; and on average we only have circa 400 new social housing lettings. This means that some households unfortunately have to wait a long time for social housing.
“To ensure that the allocations process is fair and transparent, the Council has a published Housing Allocations Scheme that sets out who qualifies to join the register and how vacant properties are prioritised for allocation.” They added: “We carry out occupational therapy assessments if required to identify residents’ individual needs and provide tailored solutions, which might include equipment for them to use and adaptations to their home to help them as much as possible.
“In order to be responsible and ensure the benefits have a long-term impact, anyone requiring major adaptations to their home needs to confirm their intention to remain living in the property for at least five years.” The Mirror has contacted NHG for further comment.
*Sara's name has been changed at her request to protect her identity.
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