Family feel abandoned as Birmingham Children's Hospital stops girl's care

17 August 2022

Michele PaduanoBBC Midlands health correspondent

News image — Maham's condition means she cannot speak, eat or walk and needs 24-hour care

BBC Maham — Maham's condition means she cannot speak, eat or walk and needs 24-hour care

The family of a nine-year-old girl who requires round the clock care said they felt abandoned by the hospital formerly responsible for her treatment.

Birmingham Children's Hospital withdrew from Maham Zaheer's complex care contract in April after the family complained about the lack of carers.

Since April, her family has been left 49 nights without cover and said they are exhausted and desperate.

The trust said staffing pressures were behind its "difficult decision".

Maham has merosin muscular dystrophy and spent three years at the hospital - most of it in intensive care. For the past five years, she has been cared for at home.

Her mother, Nomia Naz, said Maham cannot speak, eat, walk and has to be wet ventilated at night to stop her suffocating. Secretions have to be removed from her lungs and she requires medication to be made up and given at specific times.

The family had complained about shifts continually being missed and said it has gotten worse since the trust served notice about ending the contract.

They should have been given night carers every day, but 49 shifts have been missed.

"They have left us day and night without care and they have a child under their care for five years and it's just a 'sorry'," Mrs Naz said. "That hurts."

"We are exhausted, physically as well as mentally. We have been caring day and night as well as working. We have no respite."

Nomia Naz said the family was exhausted and needed support

On 20 April, the NHS Commissioner emailed the hospital asking them to meet the parents and address their concerns.

Nine days later, Birmingham Children's Hospital served three months' notice.

The trust apologised to the family for not telling them beforehand but said it followed the agreed process. It said Maham was the only child on their list that did not require invasive ventilation.

"Sadly, since the end of last year it became increasingly difficult for us to provide the care we were commissioned to do due to staffing pressures," a spokesperson said.

"For this reason, we informed the family and our commissioners we had taken the difficult decision to end our time providing the package of care a few months ago.

"We are continuing to work closely with commissioners and the new provider to offer training and share information, as well as with Maham's family, to ensure as smooth a transition as possible."

Getty Images An outside view of the entrance to Birmingham Children's Hospital — Birmingham Children's Hospital said it terminated the contract due to staffing pressures

Since the notice period ended in July, the family said they have had no night cover at all and very little day care.

Birmingham and Solihull Integrated Care Board recently appointed a private provider, Apollo Home Healthcare, and said Maham's family requested the carers be provided with thorough training from Children's Hospital staff before they take over the package in its entirety.

"This is an ongoing process which means Apollo have not covered some shifts at the request of the family, but we are confident that training will be completed imminently ahead of Apollo carers covering all of the shifts within the package," a spokesperson said.

Apollo Home Healthcare said it had staff with sufficient expertise to carry out the care and was working with the family.