Parents fear for daughter after NHS care halved
BBCThe family of a girl with a complex and life-limiting illness say they are angry after her care from the NHS was slashed by more than half.
Maham, 13, spent much of the first four years of her life in hospital and now needs round-the-clock support at home.
But the number of hours that specially trained carers come to her have been reduced so much, her parents said they feared she might end up back in hospital.
NHS Birmingham and Solihull Integrated Care Board (ICB) said changes to Maham's care package were made following "a thorough and robust review" and said she "remains eligible for Children and Young People's Continuing Care".
Her mother Nomia said: "It has put a physical and emotional strain on us as a family."
Maham is completely dependent on her family and her carers, funded by the NHS, who help with her medical needs at her home in Small Heath in Birmingham.
But the amount of help her parents received was more than halved earlier this month – from 154 hours a week to 72 in term-time, and 76 in the school holidays.
Maham has a condition called merosin muscular dystrophy, a form of muscular dystrophy characterized by muscle weakness, apparent at birth or in the first six months of life, according to medical experts.
She is unable to swallow and every 20 minutes secretions must be cleared from her mouth with a suction device, to prevent her from accidentally inhaling them - even during her journey to a special school, which she attends two days a week.
"Maham can't do anything for herself, so when you hoist her in the chair you have to hoist her out as well because she's extremely floppy," explained Nomia.
Nomia, 49, works in a supermarket at weekends and her husband, Usman, 53, is a taxi driver during the week so that one of them is always there to help Maham's carer with things like her hoist.
But since the care hours were reduced, they have been relying on the good will of neighbours to help, which they feared was unsustainable.
Nomia said: "Where's the safeguarding in this?
"We were always told that we have to be that second person [with the carer]. If anything happens to Maham I will never forgive them."
Usman added: "It's very hard and tiring. We are both working parents, one in and one out."
Maham has to be ventilated at night and for two hours during the day. She is tube fed and the only word she is able to say is "mama".
She spent nearly four years in Birmingham Children's Hospital when she was younger, much of it in intensive care and her mother said the care she now had at home kept her out of hospital.
"It's that clinical care that has carried on that has kept her out of having long admissions," Nomia said.
"Why would you not be happy to see these children thriving in the community rather than taking up a hospital bed and staying stuck there for months and months?"
Nomia and Usman have two other daughters, aged 20 and 17, and said they were devoted to their family.
"It's not easy putting your private life out in the public," said Nomia.
"What really hurts is you have to do this to make them listen. It's really disappointing. These children are more than what you see on paper."
A spokesperson for NHS Birmingham and Solihull ICB said "changes to care packages are not made lightly".
They added that they were made "following a thorough and robust review, including a formal complaints process".
"The review found the updated package to be safe, proportionate, and reflective of Maham's current clinical needs and consistent with national standards," they added.
"The review was based on detailed clinical evidence and professional assessments, fully adhering to national guidance."
Maham's care would be kept under "regular" review and adjusted if her needs changed, they said.
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