Listening saves lives: learning disability nursing and lessons from the 2026 Ockenden Report

The 2026 Ockenden Report into maternity and neonatal services at Nottingham University Hospitals NHS Trust adds to a growing body of evidence highlighting systemic failures in recognising deterioration, responding to family concerns and escalating clinical risk. Although focused on maternity care, its findings resonate across wider health and social care systems, including services for people with a learning disability and autistic people.

It comes as this week a damening rapid review by Baroness Valerie Amos into NHS maternity services in England also found too many women were not being “listened to, heard or believed”, with racism and discrimination “embedded throughout the system”.

This article explores the implications of the 2026 report alongside public accounts of Ryan Sissons’ neonatal injury, the inquest into Tom Parsons, and wider national inquiry learning including LeDeR, the Confidential Inquiry into Premature Deaths of People with a Learning Disability (CIPOLD), Winterbourne View, Whorlton Hall, Muckamore Abbey Hospital, Connor Sparrowhawk, Oliver McGowan, and the Child Safeguarding Practice Review Panel’s reports into children with disabilities and complex health needs in residential settings.

Failing to listen and implications for learning disability nurses

It argues that persistent failures to listen, escalate and act on concerns represent a central patient safety issue across systems. A learning disability nursing lens is applied to examine how family knowledge, communication, advocacy, professional curiosity, and reasonable adjustments serve as critical safeguards.

The article concludes that listening is not a relational skill alone but a core clinical safety intervention essential to reducing avoidable harm. It draws on the Ockenden findings, the case of Ryan Sissons, the inquest into Tom Parsons and wider national inquiry learning to explore implications for learning disability nursing practice.

Trigger warning: This article contains discussion of medical negligence, brain injury, safeguarding failures, abuse, neglect, restraint, avoidable death and avoidable harm affecting babies, children and adults with disabilities.

Ryan Sissons: neonatal deterioration and lifelong impact

The Ockenden Report into maternity and neonatal services at Nottingham University Hospitals NHS Trust, published in June 2026, reinforces long-standing concerns within UK healthcare: serious harm often occurs when families are not listened to, when concerns are not escalated and when early signs of deterioration are missed.¹ While the report is situated within maternity services, its findings reflect a wider systemic issue across healthcare systems supporting people with complex needs, including people with learning disabilities and autistic people.

One of the case studies in the Ockenden report involved Ryan Sissons. Public accounts of his case describe neonatal brain injury following failures around monitoring and response to postnatal hypoglycaemia. His mother raised concerns that something was not right, including concerns about feeding and his presentation after birth.

Ryan subsequently experienced severe neonatal deterioration, including hypoglycaemia and seizures, resulting in long-term neurological impairment requiring ongoing support and care throughout his life. In 2019, Nottingham University Hospitals NHS Trust formally acknowledged that earlier intervention may have altered the outcome.

This case is important because it demonstrates how early physiological deterioration, if not recognised and acted upon, can result in lifelong disability and fundamentally altered developmental pathways.

Learning disability nursing perspective

From a learning disability nursing and neurodisability perspective, cases such as this are understood as acquired brain injury in the neonatal period with long-term neurodevelopmental consequences. While detailed clinical assessment data is not publicly available, outcomes following severe neonatal hypoglycaemia with seizures may be associated with a range of neurodevelopmental impacts affecting cognition, communication, mobility and daily functioning.

It is important to avoid assumptions regarding diagnostic severity or categorisation in the absence of formal clinical documentation. The key learning is not diagnostic classification, but clinical trajectory: how early physiological deterioration, if not recognised and acted upon, can result in lifelong disability and fundamentally altered developmental pathways. This case also highlights the importance of recognising family concern as clinically significant information, particularly in pre-verbal infants where parental observation may be the earliest indicator of deterioration.

The impact of delayed acknowledgement

A further important dimension is the timing of organisational acknowledgement following serious harm. In Ryan’s case, formal recognition that earlier intervention may have altered the outcome occurred many years after the event.

Delayed acknowledgement can contribute to prolonged uncertainty, delayed access to appropriate support, and increased difficulty for families in understanding and processing what has occurred. It may also limit opportunities for earlier organisational learning and reflection. Families in such situations often emphasise the importance of being heard and having concerns acknowledged in a timely and transparent manner. This highlights the importance of compassionate communication, candour and openness following adverse events.

A central theme is that families often raised concerns early, but these were not consistently acted upon

What the 2026 Ockenden Report highlights

The Ockenden Report identifies persistent issues in maternity and neonatal services, including inconsistent recognition of deterioration, delays in escalating clinical concerns, failures in communication with families, cultural and organisational pressures affecting decision-making, governance and leadership weaknesses, failures in investigation and learning, and failures to listen to women and families.

Across maternity care, neonatal services, acute hospitals, residential children’s settings, inpatient learning disability services and wider health and social care systems, a consistent pattern emerges across national inquiries: families often identify concerns early, but systems do not always respond effectively or in time.

For learning disability nursing, this is particularly significant. People with learning disabilities frequently rely on families and carers to recognise subtle changes in health, behaviour, communication, distress or wellbeing. These observations may be critical indicators of deterioration. When concerns are not heard or acted upon, opportunities for early intervention may be missed, escalation may be delayed, clinical risk may increase, safeguarding concerns may remain hidden and preventable harm may occur.

Listening, therefore, is a core component of patient safety.

Learning disability and behaviour as communication

For some disabled children and adults with complex communication needs, distress may not be communicated verbally. Behaviour, withdrawal, agitation, changes in presentation, refusal, self-injury, altered routines, disrupted sleep, changes in eating, increased distress or changes in interaction may be the clinical language through which risk becomes visible.

The Child Safeguarding Practice Review Panel’s Phase 2 report into children with disabilities and complex health needs in residential settings emphasised that behaviour that challenges is often related to communication difficulties, loss of choice and control, and the way a child is supported.²

This is a crucial point for learning disability nursing. Failure to listen may not always look like ignoring spoken words. It may involve failing to interpret behaviour, distress, family concern, professional unease, injury, medication irregularities, changes in presentation, patterns of restraint or apparent “non-compliance” as potential evidence of unmet need, deterioration or harm.

Wider inquiry learning and system patterns

The themes identified in the Ockenden Report are consistent with findings across multiple national inquiries, safeguarding reviews and mortality reviews.

Winterbourne View exposed systemic abuse and neglect in services for people with learning disabilities and autism, and led to a national commitment to transform care, support people closer to home, and listen to people and families.³ Whorlton Hall later highlighted persistent cultural, safeguarding and regulatory failures despite prior national commitments.⁴ The Muckamore Abbey Hospital Inquiry documented serious concerns regarding abuse, governance, closed culture, medication misuse, restrictive practice and failure to act on family concerns in a hospital caring for people with learning disabilities and mental health needs.⁵

The Learning Disabilities Mortality Review programme continues to identify avoidable deaths linked to diagnostic overshadowing, communication barriers, delayed treatment, poor coordination and failure to make reasonable adjustments.⁶ The Confidential Inquiry into premature deaths of people with learning disabilities found substantial evidence of premature mortality, delays in diagnosis and treatment, and failures to provide reasonable adjustments.^7,8

Learning disability and failures in recognising risk

The death of Connor Sparrowhawk highlighted failures in recognising risk, responding to family concerns, managing epilepsy, supervising care and investigating deaths of people with learning disabilities.⁹ The death of Oliver McGowan informed national mandatory training in learning disability and autism across health and social care, recognising that staff knowledge, confidence and culture are safety issues, not optional professional development.¹⁰

The inquest into Tom Parsons identified serious omissions in care, including a 14-day failure to administer prescribed anticoagulation medication despite multiple thrombosis risk factors. The coroner identified missed opportunities to prevent death, and a Prevention of Future Deaths report has been issued to national bodies.¹¹

LeDeR findings updated in January 2026 continue to demonstrate that adults with a learning disability die, on average, 19.5 years earlier than the general population. The revised report also states that approximately 40% of reviewed adult deaths of people with a learning disability were classed as avoidable, compared with 21.8% in the general adult population.^7,8

Persistent systemic issues include diagnostic overshadowing, poor coordination between services, failure to make reasonable adjustments, failure to listen to individuals, families and carers, failure to recognise deterioration, poor escalation of clinical risk, fragmented records and poor information-sharing, weak safeguarding culture, closed cultures and delayed organisational learning. Across these cases, a consistent pattern emerges: concerns are raised, but not consistently acted upon in time.

Children with disabilities in residential settings: the Hesley review

The Child Safeguarding Practice Review Panel’s Phase 1 report into safeguarding children with disabilities and complex health needs in residential settings provides further evidence of the same systemic pattern.

The report examined the experiences of 108 children and young adults placed at specialist residential settings in Doncaster. These children had disabilities and complex health needs, including autism, learning disabilities, mental health difficulties, ADHD, and profound difficulties with receptive and expressive communication.

Phase 1 report

The Phase 1 report found evidence of sustained and significant abuse and harm, including physical abuse and violence, emotional abuse, neglect, sexual harm, medical needs not being met, medication being misused and maladministered, overuse of restraint, and disproportionate use of temporary confinement.12 Its central finding was that the voices of the children and young adults were not heard.

This is directly relevant to learning disability nursing practice. Where a person has profound communication needs, listening cannot be reduced to hearing spoken words. Listening requires skilled observation, adaptation, family partnership, advocacy, professional curiosity, and an understanding that behaviour may be a form of communication.

The Phase 1 report also found that professionals and agencies held separate pieces of information, but these were not brought together into a coherent view that would have triggered escalation and intervention. This is a familiar patient safety problem across health and social care: risk is visible in fragments but not acted upon as a pattern.

Phase 2: from learning to system change

The Phase 2 report extends this learning by focusing on national system change. It identifies the promotion of children’s voices and rights as a central priority and emphasises that children with learning disabilities, autism and complex health needs may be non-verbal, may need skilled support with expressive and receptive communication, and may communicate distress through behaviour.2

The report identifies the need to improve leadership and safeguarding culture; develop workforce skills to enable children’s communication; respond appropriately to behaviour that challenges; improve engagement with parents who speak on behalf of the child; develop independent advocacy; strengthen quality assurance and oversight; and improve commissioning and community-based provision.

Its Recommendation 1 is particularly important: all children with disabilities and complex health needs in residential settings should have access to independently commissioned, non-instructed advocacy from advocates with specialist training to actively safeguard children and respond to their communication and other needs.

This reinforces a key learning disability nursing principle: communication support, family knowledge, advocacy and professional curiosity are not peripheral to care. They are safeguarding mechanisms.

Martha’s Rule and family escalation

Martha’s Rule provides further evidence that family concern must be treated as part of patient safety. Martha’s Rule was introduced to support early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon.¹³

NHS England data show that a substantial proportion of Martha’s Rule calls came through family and carer escalation routes, and many resulted in changes to treatment or escalation of care. This matters because it demonstrates that families and carers do not merely provide emotional context. They can identify deterioration, risk and unmet need earlier than systems designed around brief observations, rotating staff and fragmented records.

The lesson is clear: family concern should be documented, escalated, reviewed and acted upon.

For people with learning disabilities and autistic people, this is even more important. Families and carers may know baseline presentation, communication style, pain behaviours, sensory responses, eating patterns, sleep patterns, distress cues and subtle signs of deterioration that are not immediately apparent to unfamiliar professionals. The lesson is clear: family concern should be documented, escalated, reviewed and acted upon.

The learning disability nursing perspective

Learning disability nursing provides a critical framework for understanding these systemic issues. The profession is grounded in advocacy, communication, human rights, reasonable adjustments, safeguarding, health equality, family partnership, positive behavioural support, multidisciplinary coordination and challenging diagnostic overshadowing. These are not peripheral values but core safety mechanisms.

People with learning disabilities are more likely to experience barriers to communication and healthcare access. This increases the importance of family and carer knowledge in identifying early warning signs.

Learning disability nurses play a key role in recognising families as expert partners in care, identifying and challenging diagnostic overshadowing, ensuring reasonable adjustments are implemented, supporting accessible communication, interpreting distress and behaviour as potential communication, escalating concerns appropriately, supporting medication safety, coordinating multidisciplinary care, promoting safeguarding culture, and challenging closed cultures and poor practice.

In this context, listening is an active clinical intervention.

Reasonable adjustments as patient safety interventions

Reasonable adjustments are often described as a legal or accessibility requirement. They are also patient safety interventions.

For people with learning disabilities and autistic people, reasonable adjustments may include accessible information, longer appointment times, quiet waiting areas, hospital passports, carer involvement, flexible communication methods, visual supports, pain assessment adaptations, desensitisation visits, clear escalation plans, reasonable adjustments to visiting policies, support from Learning Disability Liaison Nurses, documentation of baseline presentation, avoiding unnecessary restraint and involving family and carers in care planning.

The HSSIB report on caring for adults with a learning disability in acute hospitals identified safety risks where information about people’s needs and reasonable adjustments is fragmented, unavailable or not acted upon.¹⁴

This supports the article’s central argument: listening must be operationalised. It must become part of documentation, handover, escalation, risk assessment, safeguarding, medicines management and discharge planning.

From learning lessons to implementing change

Across national inquiries, a recurring conclusion is that “lessons will be learned”. However, continued evidence of avoidable harm suggests that learning is not always consistently embedded in practice.

Key questions remain. How reliably are concerns escalated and acted upon? How effectively are families included in decision-making? How consistently are reasonable adjustments implemented? How are communication needs identified and supported? How are changes in behaviour interpreted? How are professionals trained to recognise diagnostic overshadowing? How are closed cultures identified and challenged? How are organisations ensuring that learning leads to sustained change?

Without consistent system-wide implementation, similar failures risk being repeated.

Practical implications for learning disability nursing

For learning disability nursing, the practical implications are clear. Family and carer concerns should be treated as clinical information. Communication needs should be identified, documented and reviewed. Behaviour should be understood in context and explored as a form of communication. Reasonable adjustments should be built into assessment, admission, medication, deterioration, discharge and safeguarding systems. Advocacy should be available where people cannot easily instruct, explain or challenge.

Professional curiosity should be expected when presentation changes, when family concern persists, or when accounts do not fit. Where families say that something is wrong, the safest starting assumption is not that they are anxious, difficult or over-involved, but that they may be identifying risk before the system has recognised it.

Conclusion

The 2026 Ockenden Report reinforces a long-standing message across healthcare: listening to families is fundamental to patient safety.

The case of Ryan Sissons demonstrates how delays in recognising deterioration in early life can have lifelong consequences. The inquest into Tom Parsons further highlights the ongoing risks faced by people with learning disabilities within acute healthcare settings.

The Hesley reports demonstrate that, for disabled children with complex communication needs, failure to listen may involve failing to interpret behaviour, distress, family concern, professional unease, injury, medication irregularities or patterns of restraint as potential evidence of harm.

Across maternity services, neonatal care, acute hospitals, residential children’s settings, inpatient learning disability services and wider health and social care, a consistent pattern emerges: when families raise concerns, they must be heard, taken seriously and acted upon promptly.

Listening is not an optional interpersonal skill. It is a core clinical, safeguarding, and human rights function essential to reducing avoidable harm and improving outcomes.

Amy Hodkin is a dual-qualified Intellectual and Learning Disability Nurse and Social Worker with 10 years’ experience across health and social care. She is the Founder and Lead of the Intellectual and Learning Disability Nurse Community of Practice. Her key areas of expertise include neurodiversity, safeguarding, CAMHS, and reducing health inequalities for people with learning disabilities and autistic people. Her work focuses on improving system responsiveness to family and carer concerns, strengthening reasonable adjustments in practice, and promoting person-centred, rights-based care across services.

Brendan McMahon is an Expert by Experience and parent-carer of two children with learning disabilities and autism. He brings lived experience of supporting his children within everyday family life, alongside a sociological perspective on how families interact with health, education, and social care systems. His perspective highlights the importance of communication between families and professionals, and the role of parent-carers in contributing to safer, more responsive care systems.

References

1. Ockenden, D. (2026) Findings, conclusions and essential actions from the Independent Review of Maternity Services at Nottingham University Hospitals NHS Trust. London: Department of Health and Social Care. Available at: https://www.gov.uk/government/publications/ockenden-review-into-maternity-services-at-nottingham-university-hospitals-nhs-trust-final-report
2. Child Safeguarding Practice Review Panel. (2023) Safeguarding children with disabilities and complex health needs in residential settings: Phase 2 report. London: Department for Education. Available at: https://assets.publishing.service.gov.uk/media/658018401c0c2a001318cece/National_review_-_HM_Government_response_to_Child_Safeguarding_Practice_Review_Panel.pdf
3. Department of Health. (2012) Transforming care: A national response to Winterbourne View Hospital. London: Department of Health. Available at: https://assets.publishing.service.gov.uk/media/5a7b91f7ed915d13110601c3/final-report.pdf
4. Care Quality Commission. (2020) CQC inspections and regulation of Whorlton Hall 2015–2019: An independent review. Review by Professor Glynis Murphy. London: CQC. Available at: https://www.cqc.org.uk/news/stories/cqc-publishes-independent-review-its-regulation-whorlton-hall-between-2015-2019
5. Muckamore Abbey Hospital Inquiry. (2026) Report of the Muckamore Abbey Hospital Inquiry. Belfast: Muckamore Abbey Hospital Inquiry. Available at: https://www.mahinquiry.org.uk/
6. King’s College London, University of Central Lancashire and Kingston University London. (2026) LeDeR Annual Report 2023: Learning from lives and deaths — people with a learning disability and autistic people. Revised January 2026.
7. Heslop, P., Blair, P.S., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities. Bristol: Norah Fry Research Centre.
8. Heslop, P., Blair, P.S., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2014) ‘The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study’, The Lancet, 383(9920), pp. 889–895.
9. Care Quality Commission. (2016) Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC. Available at: https://www.cqc.org.uk/publications/learning-candour-and-accountability
10. Department of Health and Social Care. (2025) The Oliver McGowan Code of Practice on statutory learning disability and autism training. London: DHSC. Available at: https://www.gov.uk/government/publications/oliver-mcgowan-code-of-practice/the-oliver-mcgowan-draft-code-of-practice-on-statutory-learning-disability-and-autism-training
11. INQUEST and Leigh Day. (2026) Tom Parsons: Inquest finds significant omissions in care before death of autistic man with learning disability. London: INQUEST.
12. Child Safeguarding Practice Review Panel. (2022) Safeguarding children with disabilities and complex health needs in residential settings: Phase 1 report. London: Department for Education. Available at: https://www.gov.uk/government/publications/child-safeguarding-practice-review-panel-review-into-safeguarding-children-with-disabilities-and-complex-health-needs-in-residential-settings
13. NHS England. (2026) Martha’s Rule Programme: Statistics and implementation updates. London: NHS England. Available at: https://www.england.nhs.uk/patient-safety/marthas-rule/
14. Health Services Safety Investigations Body. (2023) Caring for adults with a learning disability in acute hospitals. London: HSSIB. Available at: https://www.hssib.org.uk/patient-safety-investigations/caring-for-adults-with-learning-disabilities-in-acute-hospitals/investigation-report/

Amy Hodkin & Brendan McMahon

Amy Hodkin is a dual-qualified Intellectual and Learning Disability Nurse and Social Worker with 10 years’ experience across health and social care. She is the Founder and Lead of the Intellectual and Learning Disability Nurse Community of Practice. Her key areas of expertise include neurodiversity, safeguarding, CAMHS, and reducing health inequalities for people with learning disabilities and autistic people. Brendan McMahon is an Expert by Experience and parent-carer of two children with learning disabilities and autism. He brings lived experience of supporting his children within everyday family life, alongside a sociological perspective on how families interact with health, education, and social care systems.

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