Parents of Sudiksha Thirumalesh who died win appeal in NHS battle

The parents of a young woman who died during a legal battle with the NHS have won their appeal over a ruling their daughter could not make decisions over her care.

Sudiksha Thirumalesh, who had a rare mitochondrial disorder, had been involved in a court fight with University Hospitals Birmingham NHS Foundation Trust over being moved to palliative care.

The 19-year-old, from Birmingham, had wanted to raise money for experimental treatment in Canada that she thought might help her rare genetic disorder.

Three judges, sitting at the Court of Appeal, overturned the legal ruling Ms Thirumalesh lacked mental capacity to make decisions about her treatment.

An anonymity order in the case was lifted last September, during a Court of Protection hearing, enabling Ms Thirumalesh’s family to speak of their anger over the battle with the trust.

In a rare move because of important legal principles in the case, the Court of Appeal had granted Sudiksha’s parents’ permission to pursue a posthumous appeal against the original ruling, made by the Court of Protection.

In the latest hearing, Lady Justice King told the court Ms Thirumalesh was “presumed to have had the capacity to give or withhold her agreement to medical treatment, including palliative treatment, at all times leading up to her death”.

But the judge added she would make “no criticism of the judge who demonstrated the same care and compassion in this case as she did in every case she heard during her time as a High Court Judge”.

Welcoming the judges’ ruling, Ms Thirumalesh’s parents Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh said: “We are grateful to the Court of Appeal for an opportunity to challenge the frightening and unfair judgment made against Sudiksha even after her death, and for setting the law straight.

“A patient’s right to disagree with her doctors, not to relinquish hope, and still to have her decisions respected, will now be part of Sudiksha’s legacy.”

Ms Thirumalesh had a cardiac arrest and died on 12 September before the Court of Protection could hear her case, which was brought with support from the Christian Legal Centre.

Following the High Court’s ruling last year against them in the case, which went on for more than a year, her family had said: “We are deeply disturbed by how we have been treated by the hospital trust and the courts.

“We were gagged, silenced and prevented from accessing specialist treatment abroad.”

They added that Ms Thirumalesh might still have been alive and recovering had she been allowed to seek treatment.

• There are different types – some are present at birth but others can develop later in life, often in young adults

• The mitochondria are the engines of the body’s cells and provide energy for all metabolic processes

• The underlying genetic cause may be different for different people but all result in the inability of the mitochondria to produce the right amount of energy

• That causes debilitating physical, developmental and cognitive disabilities

• It can affect different parts of the body, particularly those that require a lot of energy like the brain, heart and liver

• The disease is progressive and has no cure