A disabled mother has been using toilet water to wash herself because their landlord won’t make necessary changes to her London flat.

The mum-of-three, who wishes to remain anonymous, has slammed Notting Hill Genesis housing association [NHG] for singling her family out.

She told MyLondon how she has tried to convince NHG and Kensington and Chelsea Council to make the flat more accessible for the past ten years, but to date they have ignored her requests.

The 38-year-old, who has chronic back pain, said: “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.”

She is unable to lift her legs into the shower, so needs to use a damp rag to wash herself down.

When using the loo her kids are asked to look away and come cooking time she needs to sit down to prepare family meals.

In 2020 her sister wrote to NHG explaining that her sibling has to lie next to a bin full of dirty tissues before having the energy to do anything.

The West London place is inaccessible, there are no guardrails on the steep front steps and if there was a fire the woman would struggle to reach safety.

NHG offered to install rails along the wall, although because the steps were so narrow the work was unable to be carried out.

“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,” the woman explained.

She has begged NHG since 2013 to adapt the flat to make it more accessible, but her landlord has taken little action because they want the family to move into a larger property.

Kensington and Chelsea Council has carried out four occupational therapy assessments since the complaint was initially raised, on each occasion they reported the family should be replaced in a more spacious home.

The woman agrees, but says suitable alternative housing is in short supply around the Kensington and Chelsea area. Apart from her older sister, Malika, she is not receiving any help.

She has also alleged NHG will not carry out suitable adaptations on the homes she has found searching online because the housing association say it’s Kensington and Chelsea Council’s responsibility to offer advice so the two can split the cost.

The council stipulated if a tenant requests major adaptations to their property they must provide a valid reason as to why they will remain living under the same roof for the next five years.

Notting Hill Genesis offered the woman housing in Notting Hill, Hammersmith and Fulham, but she refused to move.

Malika, 42, walked away from a travel agent role so she could look after her sister and elderly mother.

“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 explained.

She said liaising with NHG on behalf of her sister was like “hitting your head against a wall and it isn’t a very soft one”. She added: “They say one thing in an email and then say something else in another email two weeks later that’s contradictory.”

Malika has also helped the daily with their shopping, collecting medication and picking the kids up from school as well as washing her sister now and again and making sure the children, Layla,14 and Zacharia, 10, are clean.

The tiny bathroom in the flat with a chair next to the sink

In 2020 Malika wrote to NHG saying: “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.”

Layla is finding the living arrangements partially challenging, going through puberty she has no privacy and feels isolated from her schoolmates.

“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.” the teenager explained: “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 is concerned he may be bullied if any of his friends knew how appalling the flat was.

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.”

The woman made a settlement with NHG in court, but she is still stuck in the flat where, at one point, she was electrocuted by one of the light switches.

Despite raising a complaint about the incident, NHG said it was unaware of the issue and repairs were carried out in late January. They also sent contractors to carry out adaptions on the property but were refused entry. The claims have been strongly denied by the woman.

 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 added: “Family-size, suitable properties within Kensington and Chelsea are already in short supply.

And the resident “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 has offered the family to temporarily move to a two-bedroom house just 180 metres away whilst they can complete the requested repairs and try to make reasonable adaptations around the flat.

The spokesperson said: “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.”

[ Notting Hill Genesis said it would discuss the potential for a shower and other adaptations in the family’s flat. ]