Halima Khatun’s daughter Amelia has 15 health conditions and needs round-the-clock care which has been cut by the council
A West London mum fears for her daughter’s life because her social home is not suitably adapted to her daughter’s complex care needs. She says the council has cut her care provisions against medical advice.
Halima Khatun lives in Feltham with her three children, including five-year-old Amelia, who lives with 15 different health conditions. This includes Cornelia de Lange syndrome – a rare genetic disorder which affects physical growth and development, limb differences, and varying degrees of learning disabilities.
Amelia, who can’t walk due to her conditions, also lives with hearing loss, a tracheostomy tube and the long term use of invasive ventilation. Halima told the Local Democracy Reporting Service (LDRS) she fears their current circumstances are a threat to Amelia’s life.
Halima said: “I want to enjoy my child whilst I have her, I love her, and I don’t want to look back and think I didn’t get to enjoy my time with her. I’m her parent, her advocate – no ‘sorry’ will bring her back to life if anything happens.”
‘Her life expectancy is unknown’
Halima lives in her Feltham home with Amelia and her other two children, including an autistic son. She says both the landlord, Notting Hill Genesis, and Hounslow Council have refused to support the family.
As Amelia cannot walk, and has behavioural difficulties linked to her genetic condition, which at times means she pulls her tracheostomy tube out, putting her life at risk, she has to have someone with her 24/7. She also requires being in a chair most of the time, however the doorways in the house have not been adapted, nor has the house got a ramp for ease of access.
Halima told the LDRS that the council did offer a ramp, however it was unsuitable, because it would mean she has to park around the corner, which is not safe for when she needs to rush Amelia to hospital. She said: “I’ve asked to be rehoused, but I’m in band two, a ten-year wait. The council says they cannot put me in an emergency band, because my daughter’s life expectancy isn’t less than 12 months – yet doctors have said her life expectancy is unknown and impossible to predict.”
The LDRS has seen medical reports which support Halima’s case in arguing her daughter’s life expectancy is impossible to predict. Hounslow Council refused to comment on why, despite medical advice, it keeps her in band two.
Halima also described the home as a hazard due to the size of its rooms – as Amelia requires 24/7 care, Halima cannot leave her in a room alone, whether it is to cook or use the bathroom. She said: “Sometimes I need to go to the toilet, but I can’t. I can’t eat… I go to bed not knowing if my child will be alive in the morning, it’s hard – she can’t voice when she is in danger.”
Halima says Notting Hill Genesis informed her the home is not adaptable, however this means that vital equipment to keep Amelia safe is having to be stored in the garden alley, instead of being kept sterile.
Halima added: “I enjoy being a mum, I’ve always wanted to be one, I wouldn’t want anyone to be in this position. I’m really depressed, I’m trapped, my children are isolated.”
Specialist nurses have written to Hounslow Council, specifically asking for the family to be placed in Band 1 priority, due to the risk of the house becoming life-threatening for the five-year-old.
The LDRS asked both Hounslow Council and Notting Hill Genesis why Halima’s concerns were not addressed. Hounslow Council did not respond to that specific question, and the housing association did not respond at all by the time of publication.
‘The council cut our care against medical advice’
Hounslow Council reduced the care provision for Amelia to one-to-one care across 60 hours. Previously, it had been two-to-one care across 89 hours. Halima describes this cut as forcing the family into “constant survival mode”, and again says it’s against medical advice.
She said: “To leave her alone is a risk, it could be catastrophic. I don’t have anyone, I’m a single mum, and the system expects me to be an octopus… I’ll be lucky if I can eat, if I can sleep. Having additional care and a suitable home would alleviate pressure, both mentally and physically.”
The LDRS has seen carer reports made after visiting Amelia, in which carers have described the struggle of operating on a one-to-one basis. According to Halima, this has, at times, led to carers calling in sick, meaning Amelia cannot go to school.
In a letter to the council, a specialist nurse urged the council to provide two carers for Amelia, on top of the new home with property adaptations.
Halima says she has pleaded with the council to improve the care provision. She said: “Let us live without having to live in survival mode, like a ticking time bomb waiting on the potentially negative uncertainty.”
‘Committed to ensuring equal access’
The LDRS put to Hounslow Council the claim that substantial medical advice had been ignored, asked whether the council accepts the home is unsafe, and asked what the council is doing to support the family. The council did not respond to the questions.
In December 2024, the LDRS reported on the case of Imran Durrani, a Hounslow resident who is forced to carry his wife up the stairs to use the toilet, because the council withdrew funding to adapt their home to her needs. In September, the Housing Ombudsman called out the council for “severe silent maladministration” in its handling of adaptations needed for a child in another one of its properties.
Councillor Sue Sampson, Cabinet Member for Housing Management and Homelessness at Hounslow Council said: “The council is committed to ensuring equal access and support for all residents with disabilities, helping people to live independently in their own homes wherever possible.
“Through the Disabled Facilities Grant (DFG) programme, we spent £2.4million completing 266 adaptations in the private sector last year, including works for housing association properties.
“DFG projects are often complex and involve a number of regulatory approvals including building control, planning, Thames Water and compliance with registered providers’ processes. With a maximum grant of £30,000 and rising construction costs, the council works hard to deliver effective and timely adaptations within the funding available.
“As part of our wider development programme, we are making sure that a share of new affordable housing is fully accessible. Since March 2024, 31 new wheelchair-adapted homes have been handed over for letting. In addition, 42 new wheelchair-accessible homes are under construction and will be available as part of upcoming housing developments. All new schemes in the borough are designed to meet planning policies and accessibility standards, ensuring inclusive housing provision across Hounslow.
“Alongside this, we are also seeing increasing demand for care hours to support residents with higher levels of need. This is set against a backdrop of significant funding and budget constraints. The council carefully assess each individual through multi agency panels that include Health, Social Care and Education partners to ensure the package meets the resident’s need.”
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