Dad’ s death from ‘cruel’ illness inspired nurse to push for changes in care

When Abbie Coutts’ dad was diagnosed with motor neurone disease she knew he was going to die.

But what her family did not expect was their struggle with the healthcare system to get the specialist help he needed.

Derek Callon was initially given between two and five years to live when he was diagnosed with the neurological condition.

“It is the diagnosis you always dread,” Ms Coutts, of Aberdeen, said.

“Unfortunately, he wasn’t able to receive any specialist care and he deteriorated very quickly with the disease, losing his ability to swallow and speak. He passed away nine months later and my family were devastated.”

Mr Callon noticed his speech was slurred when he was teaching a course in forensic science and eventually had to give it up.

Yet when the retired police officer fell ill he struggled to get any specialist care.

There was no motor neurone disease specialist near his home in Cornwall and the closest one worked in a neighbouring county.

“A lot of the care fell under the Macmillan care nurses and, although they were brilliant, it took a long time to get access to the things he needed,” said his daughter.

“It took a long time to get a wheelchair that was appropriate for him and some of the medications he had to take he needed to swallow, and swallowing was really difficult.”

Even his care at the Royal Cornwall Hospital left the family feeling frustrated because he was treated in different departments.

Mr Callon died at the age of 68 on November 11 2013.

Since then Ms Coutts, who worked as a nurse at Aberdeen Royal Infirmary for 12 years, has campaigned for improvements in healthcare for seriously ill patients. The mother-oftwo said it was the system, not the staff, which let her dad down.

“Being a nurse you’re aware that it’s not the people who are working in the system. Looking back on his final months it was very clear to the family that there were quite a few issues with the care he received, most stemming from the fact that expert care wasn’t available.”

The 45-year-old decided to give a series of lectures over the course of a week at the Cornwall hospital following her dad’s death.

“My dad went through a very cruel nine months in the lead-up to his death and I wanted to do something to help ensure this didn’t happen again.”

She has since given lectures at a palliative care conference in Aberdeen and was also invited to speak at a Manchester Patient Safety Conference.

Ms Coutts now works as a practice educator training staff at Dee View Court, a Sue Ryder specialist neurological care centre in Aberdeen. She makes sure staff involve residents in conversations about their care and that it is tailored specifically to their needs.

She also introduced daily “safety huddles” at the centre to check on the wellbeing of staff.

“I absolutely adored my dad, he was an amazing man,” Abbie said. “A lot of my determination to do this was seeing the impact this had on my mum; she was his carer 24 hours a day when he was unwell.

“For my mum to see him going through that was just absolutely heartbreaking for her.

“We knew that my dad was going to die but it was so upsetting the fact we didn’t feel that he got the best of care that he could have got at that time.”

NEED FOR CHANGE: Abbie Coutts with her dad, Derek, who died from motor neurone disease back in 2013.