The family of a teenager who died after spending over a year in hospital have been told they owe the government over £8,000 in overpaid benefits.
Sudiksha Thirumalesh had an extremely rare mitochondrial disorder and was hospitalised after contracting COVID.
Her parents say they were forced to give up work to be by her bedside while she was in hospital.
Sudiksha’s family were also involved in a legal battle over her care.
Sudiksha, 19, died in September 2023 while fighting University Hospitals Birmingham over the trust’s decision to move her into palliative care.
“It was a very great struggle each and every day for myself and my wife,” said Sudiksha’s father Thirumalesh Hemachandran.
“We went to take care of our daughter. We were hoping each and every day she will get better and come back home.”
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Entitled to a carer’s allowance and separate benefits under Universal Credit, Mr Hemachandran and his wife thought they had followed the rules, but they weren’t aware that their daughter’s hospitalisation meant they weren’t entitled to certain benefits.
Mr Hemachandran and his wife Revathi Thirumalesh, both 55, said they had to give up the shop they ran after Sudiksha’s condition deteriorated.
“My wife had to stay 24/7 in the intensive care unit because my daughter was profoundly deaf, and she needed a tracheostomy.
“Through the tracheostomy she wasn’t able to speak and she [her mother] was acting as the communicator between the medical treating team and my daughter,” says Mr Hemachandran.
Sudiksha’s family had been receiving Universal Credit payments.
Mr Hemachandran alerted the Department for Work and Pensions of that his daughter was in hospital and was then told in a letter that “the additional amount for a child will not be paid if the child or qualifying young person is temporarily absent from the household for six months or more.”
Sudiksha’s lengthy hospitalisation meant she was away from home for 14 months – too long to qualify for this payment.
The government’s decision meant her parents had technically been overpaid by £4,738.30.
They were also told they owe the Department for Work and Pensions £3,333.10 in overpaid carer’s allowance because they had alerted the department too late that Sudhiksha was being cared for in hospital.
Her parents say they were still caring for her day in, day out, even though she was no longer at home.
They say the debt is a “huge hardship” for them after they gave up work and paid out tens of thousands in legal fees when Sudiksha’s case went to the court of protection.
The teenager had wanted to go to Canada to receive experimental treatment, but lawyers for the NHS trust had argued Sudiksha was “actively dying” and was suffering severe respiratory episodes.
The family are now being supported by Christian Concern as they continue Sudiksha’s legal battle even after her death.
Next week they’ll be back in court, having appealed against a judge’s ruling that Sudiksha lacked the mental capacity to decide to seek alternative treatment.
“She wanted to fight till the very end and she wanted to be the pioneer of this therapy, that could pave the way for other children suffering,” says her brother Varshan Thirumalesh.
“She was telling me at one point when she lost hope, she wanted me to carry the baton forward to fight for justice and make sure children’s quality of life can be improved in the future.”
He says he hopes no other family has to face what his has been through.
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A Department for Work and Pensions spokesperson said: “We express our sympathies to Sudiksha Thirumalesh’s loved ones and are conducting a review of this case as a matter of urgency.”
University Hospitals Birmingham NHS Trust said: “Mr Justice Peel has commented that overall, the multiple clinicians, nursing staff and others charged with caring for Sudiksha have done so with dedication, conscientiousness and sensitivity.
“We offer our sincere and heartfelt condolences to Sudiksha’s family and loved ones, at this devastating and difficult time for them.
“Their devotion and dedication to Sudiksha was resolute throughout her stay in hospital. Sudiksha’s death was also deeply upsetting for the staff who had cared for her for such a long time.
“Our thoughts remain with Sudiksha’s family and loved ones.”
