Parent Carers experiences across Wales
A powerful and measured report has been published concerning the experiences of Parent Carers in dealing with the statutory agencies responsible for providing health and social care support for their disabled children (adults as well as young people under the age of 18). The report is based on the responses (submitted between November 2024 and April 2025) of 112 Parent Carers to a survey coordinated by Clare Lucignoli.[1]
The report summarises findings from a parent-led survey examining the experiences of parents and carers of disabled children and adults when seeking support from local authorities, health boards, education services, and commissioned care providers.
The aim of the research was to identify recurring patterns within statutory systems that contribute to harm, distress, and unmet need among families, and to highlight areas where change is required.
The executive briefing to the report can be accessed by clicking here. Its key findings include, that:
- 84% of respondents stated that their child was not receiving an appropriate level of support.
- 84% of those who used a formal complaints process said their complaint did not resolve the issue raised.
- Fear of retaliation, including escalation to safeguarding processes or loss of support, was repeatedly cited as a reason for not requesting help.
In relation to the inadequacy of appropriate support arrangements, parents described long waits for assessments, lack of coordinated multi-agency input, poor communication between services, and support being offered only once families reached crisis point. Children with complex needs were frequently described as receiving fragmented or inadequate care across education, health, and social care.
A recurring theme throughout the responses was the experience of being blamed or disbelieved when seeking support. Parents described being held responsible for their child’s distress or unmet needs – of having professional judgments override their lived expertise, and of facing questioning concerning their parenting capacity. Some described being subjected to safeguarding or Fabricated or Induced Illness (FII) related processes after they had approached the authority with a request for support. The report notes that these experiences contributed to distress, withdrawal from engagement, and long-term mistrust of services.
In this context, ‘fear’ emerged as a significant factor influencing whether parents felt able to ask for help. Respondents described concerns about escalation to safeguarding procedures, loss of existing support, or placement of their child outside the family home. Some reported that fear prevented them from raising concerns, making complaints, or sharing their experiences openly – and in consequence reducing access to support and experiencing increased isolation.
The author of the report (and no doubt the parents responding to the survey) hope that the findings will inform Welsh Government ministers, local authority leaders, health boards, and cross-party groups with an interest in disability, health, and social justice – and support decisions about future policy and practice.
The report’s overall call to action is summarised as a need for system-level change to ensure that statutory services are experienced by families as safe, fair, and responsive.
Important links:
- The executive briefing to the report can be accessed by clicking here.
- Clare Lucignoli’s posting on the Rightful Lives webpages concerning the above report can be accessed by clicking here.
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[1] See Clare’s posting on the Rightful Lives website at http://rightfullives.org.uk/blog/report-of-experiences-of-parent-carers-of-disabled-children-and-adults-across-wales/. Clare received invaluable support from two parents in England Rekha Neilson and Bengi O’Reilly, and from Oliver Knight and from Jayne Knight of My Great Life CIC.
Photograph of ‘ Rhwydwr y Fenai’ by Richard Jones -@lluniaurich
Posted 27 February 2026