Belfast Health Trust failed young woman with severe disability - ombudsman

A young woman with a severe disability was failed by a health trust before she died, a watchdog has said.

Sofia Cerulli, who died in 2020, had a life-limiting condition and complex needs, which required 24-hour care.

Her long-term care package was changed by the Belfast Health and Social Care Trust when she turned 18 in 2019.

Sofia's mother Vittoria said the change resulted in a significant fall in the standard of care, a complaint upheld by the Public Services Ombudsman.

The ombudsman Margaret Kelly said there was "a failure to put Sofia, a young woman with a life-limiting condition who was tube fed, on oxygen and needed suctioning, at the centre of this process".

The Belfast Trust has apologised to Sofia's family and offered "heartfelt condolences on her passing".

Sofia's mother Vittoria says she spent the last year of her daughter's life "worried about keeping her safe"

Vittoria said her family trusted the children's care team who understood her daughter's needs but that changed after the move to adult services.

"All that we worked on together for 15 years, and was working well, was taken away for lack of planning and for sheer bureaucracy. There was no need to do that," she said.

"The last year or so of Sofia's life, instead of enjoying her… we were both worried about keeping her safe."

The Northern Ireland Public Services Ombudsman (Nipso) said she was "surprised" the trust dismantled a care package that had been in place for several years and had been working effectively.

She also said she was concerned that the adult team did not contact the children's team for their advice or any training in order to provide Sofia with an ongoing standard of care.

"One of the failures we found was that their staff couldn't actually suction Sofia, something she needed several times a day to ensure her health and wellbeing."

A Belfast Trust spokesperson said: "We fully accept and acknowledge the findings in the Nipso report and have been working to ensure our processes for transition from child to adult care are more robust."

Vittoria said the ombudsman's findings "showed that Sofia and our family were failed in more ways than we initially realised".

Margaret Kelly found care that plans were incomplete at the start of the new adult package

The ombudsman found the change to the care package caused "the injustice of lost opportunity, distress and anxiety" for Sofia and her family before she died.

"Sadly due to the subsequent death of the service user, those disruptive and anxious months were among the last that the family had with their precious daughter and sister," said Ms Kelly.

She also said: "The trust failed to engage in the process of transition as early as it should have done."

The earliest record the trust provided of Adult Services' involvement was one month before Sofia's 18th birthday.

'Care plans incomplete'

Ms Kelly noted that "opportunities were lost for decision makers to build relationships with the service user and her family".

She also found "care plans were incomplete and insufficient at the commencement of the new care package" and that there were gaps in documentation.

It was recommended that the chief executive of the Belfast Trust apologise to Sofia's mother and that it develops policy and procedures to govern the transition between child and adult services.

The ombudsman said there was a "significant and unacceptable gap and one which requires to be remedied urgently".

"There are probably around 80 young people at any given time across trusts in Northern Ireland who are moving from children's to adult services with a life-limiting condition.

"The policy should have been there and the trust should have known how to provide this care."

Changes to care policy for children with complex needs be Sofia's legacy, says her mum

Vittoria said the recommended changes would make a difference for the families of children with complex needs.

"It's too late for Sofia but that will be her legacy to those children," she added.

The Belfast Trust said it had been working on the implementation of a new policy on transition between child and adult disability services.

"We have also appointed a specialist nurse who will work with children from the age of 14 who are moving to adult services," it added.

"We fully accept that transitioning from children's services to adult services can create a great deal of anxiety for our young patients and their families, and we are determined to ensure that proper processes are followed at all times.

"Patients with complex needs are properly assessed and their families are also guided through the process."