'Please listen to me... I want my mum with me all the time': The heart-breaking notes written by a tragic teenager locked in an end-of-life legal battle with doctors which her family claim prove she had 'capacity until the very end'
- Sudiksha Thirumalesh died of a cardiac arrest as she fought for trial treatment
These heart-breaking notes written by a tragic teenager locked in an end-of-life legal battle with doctors prove she had 'capacity until the very end', her family has claimed.
Sudiksha Thirumalesh, 19, who suffered from a rare degenerative disease, died of a cardiac arrest as she fought an NHS Trust's attempts to withdraw her life-preserving care.
She was left devastated after a judge ruled last month that she lacked the mental capacity to make her own decisions and that her fate must be decided by the courts. Now her parents say notes given to the Daily Mail show the former straight-A pupil was cogent and clearly able to communicate her wishes.
'My daughter 100 per cent had capacity and she had that capacity until the very end, there is no doubt about it. These notes show that,' her devastated father Thirumalesh Hemachandran said tonight.
Sudiksha, who had mitochondrial depletion syndrome, relied on a ventilator, a feeding tube and regular dialysis after contracting Covid-19 last year. Her tracheostomy let her speak in short bursts and she could also communicate via writing notes and sending text messages. Some show how she had requested adjustments to her care.
Sudiksha Thirumalesh, 19, who suffered from a rare degenerative disease, died of a cardiac arrest as she fought an NHS Trust's attempts to withdraw her life-preserving care
Other more heart-wrenching messages reveal how she had pleaded for her mother, complained of being in pain and even apologised to her father for showing 'anger'.
In one she writes 'I want my mum with me all the time' and in another she says 'I want her now, pls call.' Another from last month states 'Please listen to me', adding: 'Everyone is relying on the machine and giving pain killer.' She also refers to her 'tummy hurting' and asks for her feeding tube to be adjusted.
In another message she complains that a staff member 'doesn't understand my pain' while in another she asks her parents to make sure her nurse doesn't pull her PICC line – a type of catheter.
Other notes show Sudiksha having better days. 'I was kind of excited to sit in the chair yesterday and today', she writes, having been bedbound for much of her time. The remarkable teenager, who was barred from telling her story by a draconian gagging order, died after speaking anonymously in the Mail about launching an appeal against the ruling on her capacity.
Her parents have vowed to continue her legal fight even after her death to prove the courts wrong as well as to ensure 'no one else's child' is subjected to the same ordeal.
Now watch the Mail's exclusive documentary on Sudiksha's awe-inspiring battle for life
The judgment was made last month despite two psychiatrists stating that Sudiksha did have 'capacity', with one noting that she was 'comfortable, smiling, alert and in clear consciousness'.
The trust, which cannot be named for legal reasons, claimed that the teenager was 'actively dying' and the kindest course was to 'de-escalate her intensive care'.
Her doctors successfully argued that her refusal to accept their view was a sign of delusion and that the Court of Protection should decide her fate.
'When Sudiksha was alive she was so upset about the ruling and we feel like we owe it to her to fight her appeal on her behalf,' her 55-year-old father said.
'She had spent some 45 minutes talking to the psychiatrists who found that she had capacity yet the judge found the opposite. She signed all her own paperwork.
'She could speak, and when she grew tired she could hold the notebook and paper and write her thoughts very well.'
The family said she was fully cogent until her death on September 12 – and even remembered to give one of her nurses a wedding anniversary present two days earlier. Sudiksha's family went to the High Court last week to successfully remove the reporting restrictions which had reduced her identity to the initials 'ST'.
Andrea Williams, chief executive of the Christian Legal Centre which is supporting the family, demanded that the 'perverse' judgment on Sudiksha's capacity must be 'overturned'.
'Sudiksha's tragic case has revealed flaws in law and medicine on decision-making processes when it comes to assessing whether a person has mental capacity to make choices on their own behalf,' she added.
The family are still fighting for restrictions on identifying the NHS trust, hospital and clinicians involved to be lifted.
Sudiksha: Condemned to die in secret at 19 - Watch the Mail's exclusive documentary here.
