Press Release

Sudiksha: DWP cancel benefit overpayment charge against grieving family after backlash

2 May 2024         Issued by: Christian Concern

The Department for Work and Pensions (DWP) has backed down over forcing a family involved in a tragic end-of-life case to pay back benefit overpayments after a media outcry.

The family of Sudiksha Thirumalesh, the teenager who tragically passed a way after a legal battle with the NHS over her care last year, had been ordered to pay back benefits of up to £8,000.

The charges were made despite the payments being given to them in error, and the family being given a choice of either allowing the NHS to subject their fully-conscious daughter to end-of-life proceedings against her wishes, or fighting a costly legal battle to give her a chance to survive.

After choosing to the resist the NHS, and before being supported pro-bono by the Christian Legal Centre, they lost all of their life savings, had to get into further debt and even had to sell jewellery.

Sudiksha was suffering from a rare mitochondrial disease and wanted to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment. Able to communicate, Sudiksha said she wanted to ‘die trying to live’. 

However, a strict gagging order secured by the NHS prevented the family from telling their story to the media and from fundraising to support themselves.

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 family are challenging this disturbing ruling in the Court of Appeal this week. Intervenors, MIND, say the ruling sets a ‘dangerous precedent’ for anyone using NHS services who disagrees with their doctors.

Caring 24/7

Sudiksha had been in intensive care for over a year and the family could not keep working while also providing care and support to their daughter 24/7.

The family constantly kept Universal Credit (UC) up to date on their circumstances, but were told that payments could not continue after Sudiksha had been in hospital for over six months. However, the family were only informed of this in August 2023 after they had been continuing to receive the payments for the previous six months.

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 in September 2023, the family were informed by 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.”

In a letter to the DWP from the Christian Legal Centre requested a discretionary waiver, saying: “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.”

Media outcry

After a media outcry last week, the DWP said they were ‘urgently’ reviewing the case and today (May 2) confirmed that they have waived and cancelled the overpayment.

A DWP spokesperson said: “Our sympathies are with Sudiksha Thirumalesh’s loved ones. Following a review of this case, we have imposed a waiver and cancelled the overpayment.”

Responding to the news, Mr Thirumalesh said: “We are very pleased that the DWP has seen sense in this matter and has done the right thing. We felt like we were being kicked while we were down and that it was a great injustice. This relieves some of the pressure on us, but nothing can rectify how we were treated by the NHS at such a moment of tragedy and need for us.

“We call on the NHS and other bodies to do much more to support families when their children are desperately ill in hospital and are having to still care for them 24/7. A humane society should be supporting families through tragedy, not bringing legal cases against them or causing them endless stress and pressure.

“We are concerned about how many other families have had to deal with situations like this. The system needs to change to support families and to uphold life, rather than a death culture that is so often hostile to families.”

Andrea Williams, chief executive of the Christian Legal Centre, said: “Forcing them to repay the money was not in the public interest and we are pleased that the DWP has responded urgently and that the charges have now been quickly waived.

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

“A good and humane society does not treat a family in the middle of such a tragedy, like this, and it should never have got to this point.

“We need a culture within the NHS and our institutions that humanely supports life and families in the middle of tragedy rather than enforcing death against their wishes and punishing parents for wanting to explore options to give their child a chance of life.”

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