Doctors ignored the concerns of a seriously ill girl’s parents before reducing her pain medication, her mother and stepfather have claimed at an inquest.
Melody Driscoll died in July 2018 after years of serious illness with conditions including Rett syndrome – a rare, life-limiting neurological disorder – as well as global developmental delay, gastrointestinal problems and epilepsy.
Diagnosed with Rett syndrome at the age of two, Melody was referred to Great Ormond Street Hospital (GOSH), which was responsible for much of her care until she was 10.
Melody, from Thornton Heath, south London, was later treated at King’s College Hospital (KCH), where she died aged 11.
Her mother Karina and stepfather Nigel have alleged the actions of KCH reduced Melody’s quality of life and contributed to her death.
Both attended the start of the inquest on Monday, wearing yellow shirts reading “Justice for Melody” in court, sitting beside a large canvas picture of their daughter.
In a written statement read out by her barrister Patricia Hitchcock QC, Mrs Driscoll said: “She was a stunning, vibrant, happy little girl who loved life, she was really smiley and even when she was suffering the most severe pain, she would smile every day at some point.”
Southwark Coroner’s Court heard Melody suffered from very severe pain, requiring continuous pain relief, including morphine, for much of her life.
Mrs Driscoll told the court that while she was largely non-verbal, her daughter made recognisable signs when she was in pain, including tensing her muscles, shouting, self-harming and pulling on her tubes.
However, she claimed staff at KCH had a “we know best attitude” that meant Mrs Driscoll’s concerns were not listened to.
“I would say that King’s College Hospital took a very negative view about Melody and us as a family from an early age and, for example, started to believe that Melody’s pain behaviours were not in fact expressions of pain but her simply ‘acting out’.”
Mrs Driscoll’s statement added that “very serious allegations” were made against her and Melody’s stepfather about their ability to care for her.
The inquest heard a combination of steroid medication and painkillers helped reduce flare-ups where Melody’s pain would be especially severe for days or weeks.
However, Mrs Driscoll said KCH had insisted there was no need for the steroid, reducing her dose around September 2017.
“King’s College Hospital had unilaterally decided… to stop the medication as there was said to be no supporting evidence for inflammation,” she said.
Melody’s parents are “adamant” that she would have been in a much better condition for future treatments had the steroids not been reduced.
They also claim that reducing her analgesia dose, used to refer to her painkillers, also contributed to her death.
Mrs Driscoll’s statement added: “When Melody was left in severe pain, she tightened her body muscles intensely and clenched and pulled in her limbs. This would worsen the extent of the internal bleeding.”
She continued: “I still feel an overwhelming sense of sadness that purely because Melody could not herself say what she needed, and KCH were unwilling to learn Melody’s ways of communicating her pain or listen to those who knew how she communicated, she was left without appropriate treatment and lost her quality of life.”
The inquest, which is due to last three days, continues.