Report highlights difficulties facing families and clinicians in children's disability services 

A Cork parent has described the findings of a new survey about Progressing Disability Services (PDS) in Ireland as “unsurprising” and called for clinicians and parents to unite for the provision of a safe service for children.

Parent and Cork Chair of Families Unite for Services and Support (FUSS) Rebecca O’Riordan said that the Thoughts and Experiences of PDS The Perspectives of Service Users, Carers and Clinicians 2023 report conducted by FUSS highlights the need for clinicians and families to come together to fight for one shared goal of a safe service.

In what is the organisation's first publication since its inception, FUSS conducted an anonymous survey among parents, carers, guardians, Progressing Disability Services clinicians and private clinicians to gain insight into their experiences of children's services in Ireland. The data was collected via an anonymous survey between April 28, 2023 and May 3, 2023.

FUSS said in the report that since the reconfiguration of PDS in 2021, accessing and providing services has become increasingly difficult and that clinicians are “at their wit's end, burdened with unrealistic caseloads and working on skeleton teams” in a service that has been “underfunded and under-resourced for decades”.

The report addresses the impact of re-configuration on Children’s Disability Network Teams (CDNTs) and Primary Care teams as well as the changes for families, both positive and negative.

FINDINGS

97% identified staffing recruitment and retention as a vital threat to the success of service provision.

45% agreed that staff pay and conditions play a major role in PDS' inability to retain its current staff and entice more to join the workforce.

80% of respondents feel that the PDS model and subsequent reconfiguration have failed while 16% remain unsure.

40% of respondents said they do not understand the PDS model or the purpose of reconfiguration.

4% of participants feel the PDS model is worth striving for but acknowledge that without adequate staffing and resources, it is an impossible feat.

72% of participants feel that there is a lack of accountability by upper levels of management and disability services have been described as disjointed, diluted, and clinically unsafe for staff and users.

The report also identified a call for specialist and cohesive inter-agency working.

Speaking to The Echo about the report’s findings Ms O’Riordan said: “I think that the responses of the families and clinicians were very understandable and unfortunately not surprising.

“We feel that clinicians and families are generally on the same team in that they are frustrated beyond belief with what is expected of them.

“For families that may mean coming to terms with their child starting at a special school having never had a single therapy appointment, advocating endlessly and feeling like everything is constantly pushed back on them to do more when they're already burnt out.

“For clinicians, it often means standing over decisions which undermine their clinical standards and the integrity of the service they want to provide.” 

She said that FUSS believes a “critical turning point” has been reached in the crisis whereby clinicians and families will need to come together to fight for the shared goal of a safe service that enables their children to thrive.

FUSS met with both Department of Children, Equality, Disability, Integration and Youth's Minister Roderic O’Gorman and Minister Anne Rabbitte on May 11, 2023 where both were provided with a copy of the report and has plans to release a further report on June 1 on governance and accountability.