Isla and Helen

Helen said her daughter Isla used to enjoy life and make the most out of every day. ‘She had a lovely smile and she always tried to make people happy and loved helping whenever she could … She loved to sing every day.’

Isla died in her late 20s. Helen believes her death was preventable.

Isla had a ‘mild’ cognitive disability. She lived an independent life. She couldn’t travel very far by herself but ‘was able to go to the local shops and back by herself’.

One weekend she was unwell. She was vomiting and had pain in her ear. Helen gave her paracetamol but it didn’t help. On Monday a doctor saw Isla at home. He said she had an ear infection and gave her a prescription.

A few hours after her first dose of the medication, Isla’s sister noticed something very wrong. Isla had spit bubbles on her lips and ‘appeared out of it’. Helen thought she’d ‘had a seizure or a fit because she was not herself and was not acting normally’. The ambulance took Isla to the local hospital.

At the hospital Isla complained repeatedly about her ear. ‘She was distressed and wanted to get out of bed all the time.’ Helen realised Isla was hot to the touch, but staff didn’t pay attention when she told them.

In the early hours of morning the treating doctor came to see Isla. Helen told the doctor she believed Isla had ‘had a fit or seizure’, but the doctor didn’t seem to believe her. The doctor wrote a prescription, told Helen to give Nurofen to Isla, and discharged her with a letter stating she ‘was having a “temper tantrum”’.

Helen knew Isla was in pain and she appeared to be in distress but the ‘nursing staff just told me not to worry’. Helen asked a nurse if Isla could stay in the hospital. The nurse was uncertain, but soon after the doctor walked past.

‘You’re still here?’ the doctor asked. Helen explained she could not get Isla out of bed. The doctor asked if she wanted security to help. Helen felt threatened and ‘stunned’. She ‘was scared and stressed’ because Isla needed help and ‘they did not seem to care’.

Helen approached a different nurse and explained they had been told to leave but Isla was still in pain. The nurse found a wheelchair, ‘manhandled’ Isla into it and wheeled her to the taxi rank.

A few hours later Isla was dead.

The coroner found Isla died due to meningitis. The hospital doctor had thought she might have had meningitis, but later decided Isla ‘couldn’t stand the pain in her ear because of her disability’. She admitted her diagnosis ‘was inaccurate and inadequate’.

The coroner found Isla had been ‘treated differently from the way they might have assessed and treated other patients and that staff made assumptions that her inability to communicate was due to “behavioural issues” associated with her disability, without investigating her symptoms further’.

The coroner made recommendations for the hospital to improve the care of people with intellectual disability, including more assessments for people with intellectual disability before discharge or transfer, and where seizures occur. The recommendations also included more training and self-care for medical staff.

Helen returned to the hospital a few times after Isla’s death to find out if it ‘had followed the recommendations made at the inquest’. She remains in the dark, because on each occasion they ‘called security straight away’.

Helen believes medical staff should ‘listen to parents and carers who know their child best and how their child responds’. But above all they ‘need to care more’.

‘My family and I are still angry and upset,’ Isla said. ‘If a doctor discriminates in their treatment of a patient based on whether they have a disability … [they should be] ‘immediately stood down from their position.’ Helen would like to see a change to the law to make this enforceable.

‘I do not want any more families to suffer.’