Family nearly bankrupted by NHS for trying to save their daughter

30 April 2024

The Department for Work and Pensions (DWP) has refused to reconsider its own error of overpaying benefits to a Christian family already nearly bankrupted by an NHS legal case brought against them to end the life of their daughter.

In September 2023, 19-year-old Sudiksha Thirumalesh and her family had been locked in a lengthy legal battle with the NHS over her mental capacity to make her own decisions about pursuing life-saving treatment. Reporting restrictions had prevented her from telling her story to the media.

Sudiksha was suffering from a rare genetic mitochondrial disease, but was fully conscious and able to communicate, which her heart-breaking written notes reveal.

Sudiksha, a committed Christian, had said she wanted to ‘die trying to live’. But the restrictions placed on her and her family by a Court of Protection order barred them from speaking publicly about her case. This severely inhibited the family’s ability to raise funds to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment.

Prior to the Covid pandemic, Sudiksha had been doing well on a clinical trial which tragically ceased to operate during Covid.

The family had faced being criminalised if they breached the order by naming Sudiksha, themselves or anything that would identify Queen Elizabeth Hospital, Birmingham, University Hospitals Birmingham NHS Foundation Trust, or clinicians involved in her care.

After legal proceedings were brought against the family by the Trust, a judgment from Mrs Justice Roberts had disturbingly said that Sudiksha did not have mental capacity to make her own decisions after NHS lawyers argued she was ‘delusional’ for disagreeing with the hospital’s view that her condition was hopeless and she had to be put on an end of life pathway.

The Hospital argued that while Sudiksha’s prognosis was uncertain and she could have survived for some months, her condition was deteriorating, and she was therefore “actively dying”.

The ruling was made despite two expert psychiatrists providing evidence that concluded that Sudiksha did have capacity.

After telling her story anonymously to the media as ‘ST’, Sudiksha tragically died just days later on 12 September 2023. Only in the weeks after her death was the Court Order lifted and she was finally allowed to be named.

On Wednesday 1 May 2024 at the Court of Appeal, supported pro-bono by the Christian Legal Centre, the family will seek to overturn Mrs Justice Roberts’ ruling that Sudiksha lacked capacity.

NHS legal system

Heading into the appeal, however, the legal battle imposed upon the family by the NHS has cost them dearly.

Traumatised throughout the ordeal and still deeply grieving their daughter’s loss, they have been almost bankrupted and continue to be victimised for daring to take on the system.

When Sudiksha, aged 18, was first admitted to into Queen Elizabeth Hospital, Birmingham in September 2022, her parents notified Universal Credit that they had been unable to work since 20 August 2022.

Despite her health, Sudiksha was also determined to continue her A Levels at the hospital’s school.

By February 2023, and with Sudiksha being treated in intensive care, the Trust initiated legal proceedings, making an application to the Court of Protection to challenge the validity of Sudiksha’s lasting power of attorney (LPA) to her parents.

After the Office of the Public Guardian verified and confirmed the validity of LPA on 19 June 2023, on 20 June 2023 the Trust made a further application for a declaration that Sudiksha lacked mental capacity and it was in her ‘best interests’ to withdraw active life-sustaining treatment and follow a palliative care plan allowing her to die.

Sudiksha’s parents had no choice but to instruct lawyers to defend the proceedings where the Trust sought to bring their daughter’s life to an end.

Seven hearings took place over the following months costing the family tens of thousands of pounds. At this time the parents were not aware of potential pro-bono legal support potentially available to them via the Christian Legal Centre.

During this time the parents had to sell jewellery and get into further debt to make ends meet. Sudiksha’s mother stayed by her daughter’s bedside day and night.

In March 2023, the Trust then obtained the ‘Transparency Order’ from the High Court which, as well as preventing them from fundraising for specialist treatment, also meant they could not fundraise to cover legal costs or day-to-day living.

The parents were informed that they were no longer entitled to the child element of Universal Credit because Sudiksha had turned 19, on 9 August 2023.

Mr Thirumalesh made several appeals to the DWP via his journal that Sudiksha, though 19, was continuing her education in hospital.

It was in response to this, on 24 August 2023 that DWP notified Mr Thirumalesh of an overpayment because Sudiksha had been in hospital for more than 6 months.

Despite having provided updates at all times on their material situation, they were ordered to re-pay £4,738.80.

‘You constantly kept UC up to date’

Distraught and under immense pressure on every front, Mr Thirumalesh immediately requested a mandatory reconsideration.

Only on 3 January 2024, almost four months after Sudiksha’s subsequent death, the family were informed by a UC that they could not change the original decision.

The decision maker said: “I acknowledge that throughout all your meetings and appointments with UC that you constantly kept UC up to date will all the relevant changes and circumstances regarding your daughter’s health and hospital stay.”

However, they concluded that:

“Whilst I acknowledge and sympathize with the situation you were in at this time with your daughter being in ICU and both your partner and yourself taking turns to care for her whilst at hospital and this making it difficult on your financial situation, I am unable to remove the overpayment as you would not have been entitled to the child element from 6 months after her admission to hospital and for the purposes of UC, no special circumstances apply to this rule.

“Due to your financial struggle, I can suggest that you contact the debt management department to arrange affordable monthly repayments that you and your benefit unit are able to cope with.

“Any payment of Universal Credit made in excess of entitlement is a recoverable overpayment, regardless of how the overpayment was caused. This includes those overpayments arising wholly as a result of official error. This is because there is a duty to protect public funds and an obligation, wherever possible, to make sure that an overpayment is recovered.”

Discretionary waiver

In a letter to the DWP from the Christian Legal Centre requesting a discretionary waiver, lawyers said:

“The [parents] remain deeply grieved by their daughter’s death, but also by the process which led to it, whereby they had to resist misconceived and chaotic legal proceedings brought against them by an NHS Trust and were unfairly gagged from publicly discussing her tragic situation and from appealing to the public for funds.”

Citing legal precedent, they wrote that: “The power to recover overpaid benefits is a power, not a duty” and added that:

“Crucially, [the parents] spent the overpaid amounts on day to day living expenses and legal expenses in an immensely tragic situation, which was seriously aggravated by inappropriate conduct of other state authorities such as the Trust, including massive adverse effect on the family’s finances. In those circumstances, seeking to recover overpayment from the Claimants would be grossly unjust.”

Furthermore, they say:

“Given the family tragedy of [the parents], partly resulting from errors made by the agents of the state; the fact that those errors have already caused financial ruin to [the parents]; and the public controversy which arose about the ethical issues involved in this case, it is plainly not in the public interest to recover overpayment in this case.”

‘DWP must do the right thing’

Responding to the news, Mr Thirumalesh said:

“This has come as another devastating blow to our family. It feels like the system is kicking us while we are down. We did everything by the book and have been punished for it.

“The transparency order prevented us from getting the help we needed during the toughest time of our lives. We were trapped and gagged in that hospital with the constant choice of giving up on the life of our daughter or facing financial ruin. This is no way to treat a family in such a difficult and traumatic situation, especially when it was not even our error that led to the overpayment.

“We want to explore every avenue to receive justice in this matter and call on the DWP to do the right thing.”

Andrea Williams, chief executive of the Christian Legal Centre, said:

A good and humane society does not treat a family in the middle of such a tragedy, like this.

“There was no error on the part of the family, and they should not be made to suffer now.

“Forcing them to repay the money is not in the public interest and should be waived.

“The NHS brought the legal proceedings against the family forcing them to spend their life’s savings on legal challenges to prevent their daughter’s life being ended against their and Sudiksha’s wishes.

“The frequent use of court orders in end-of-life cases, which threaten families in the middle of tragedy with being criminalised if they break them, are being weaponised to silence criticism and accountability of hospitals, the NHS, and the system more widely.”

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