By Dean Thomas-Welch, Swansea Correspondent
The actions of senior nurses who provided care to severely disabled children in Swansea have been described as completely unacceptable by Swansea Bay University Health Board.
It comes as ITV Wales has gained exclusive access to a damning review into care provided by Children's Community Nursing Services (CCNS) at SBUHB which uncovered a breakdown in trust from families and demoralised staff.
The external review followed reports made to ITV News by families of disabled children who blew the whistle on management within the CCNS.
They claimed senior nurses made anonymous and bogus claims to social services, wrongly withdrew care, made threats to remove children from their parents and even sent police to the door of one family for complaining of their treatment on social media.
The review, seen exclusively by ITV Wales found
Families receiving care reported sanctions being imposed on them if they complained. This lead to a lack of trust in the CCNS and in some cases a total breakdown in relationship.
90% of families spoken to in the review complained of concerns that had not been addressed properly.
The review discovered complaints about professional practice within the service.
Staff within CCNS reported feeling demoralised and frustrated with their workloads.
Decisions by CCNS management were made outside Welsh Government guidance.
The external review, which was launched in March and covered twenty children receiving care from the Children's Community Nursing Services team, made a total of 34 recommendations.
SBUHB Chief Executive, Mark Hackett described the outcome of the review as 'completely unacceptable'.
"Sadly, it is very clear from this independent report that there have been serious issues around care delivery and the leadership culture within our Children’s Community Nursing Services service for some time.
This is hugely disappointing and completely unacceptable. On behalf of the health board, I sincerely apologise to the families affected".
Robert Channon from Swansea said his family had suffered a campaign of harassment and bullying at the hands of senior nurses from the Children's Community Nursing Services team who were tasked with providing care for his disabled son Gethin.
Robert said management tried to "devastate their lives" after he complained of a lack of care for Gethin.
This included a bogus referral made by senior nurses to social services claiming prescribed drugs had been misused by the family and police officers sent to their home after Robert complained on social media of poor care.
Robert told ITV News in March:
"They didn't like that fact that we complained about them and as a result of that they attempted to devastate our lives, and to some degree, they achieved that.
Every time there is a knock on the door and we are not expecting a delivery or a nurse to turn up I am always worried it is the police, once again, being sent to our house".
Welcoming the findings of the review, Robert said
"Vindicated, that's the first thing. We felt the reviewers were incredibly fair, they listened to families feedback and staff feedback, and we were just elated at the findings.
It justified all the complaints and things we have been saying for the past two and a half years"
In a statement, SBUHB said,
"We know that families play an extremely important role in the care of children with ongoing health problems.
So it’s vital that they are viewed as part of the NHS team which is providing this care.
Regrettably, the report shows that this hasn’t been the experience of a significant proportion of parents.
Please be assured that this will change. Every effort is being made to ensure that in future the service will be far more inclusive, and focused on the needs of the individual child.
Our priorities now are repairing relationships with families and working alongside them to improve our services."
As part of the overhaul of Children's Community Nursing Services, SBUHB says the leadership of the service has changed and that future concerns and complaints will be properly recorded and actioned.