A new Public Interest report issued by the Public Services Ombudsman for Wales finds that Hywel Dda University Health Board failed to provide ongoing specialist care for epilepsy patients with a learning disability (LD) after its dedicated service ended in June 2021.

The report highlights the impact on patients with complex needs and their carers, and finds that four years later, there is still no clear pathway in place to ensure access to appropriate specialist care.

The Ombudsman launched an investigation after Ms A complained on behalf of seven complainants, all of whom had adult children who had been using the service. The complainants said that the Health Board had failed to make adequate provision for their care after the service ended, and that there was still no clear plan to meet the needs of LD epilepsy patients within the Health Board. Many of these patients have multiple complex needs and are at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP).

The Ombudsman found that when the Health Board’s LD Epilepsy Service ended in June 2021, the Health Board did not review patients’ needs in a timely manner, nor did it provide adequate alternative provision. Patients with complex needs were left without clear care provision in place.

This lack of service and poor communication placed significant pressure on carers and healthcare staff. Several patients now access specialist care outside the Health Board area due to the absence of a local service.

While the Health Board commissioned an External Review, progress towards implementing its recommendations has been slow. Four years later, there is still no clear, accessible pathway to ensure the needs of this vulnerable group are met, and current provision appears fragmented.

The Ombudsman previously issued a public report against the Health Board in 2021 about a similar issue of poor service planning and the failure to take prompt steps to make arrangements to meet the clinical needs of patients when a service ended.

Commenting on the report, Public Services Ombudsman for Wales, Michelle Morris, said:

“The lack of service provision, poor communication, and slow response to complaints has caused significant distress to the seven complainants. Carers have described feeling abandoned and unsupported, unsure who to contact for advice or assistance, while having to navigate a lengthy complaints process with no clear outcome.

The role of a carer is already demanding, and the sudden removal of a key support system has only added to their stress. This represents a serious injustice to patients and their families, and I am mindful that others may be experiencing similar failings. The Health Board must now take urgent action to ensure these vulnerable patients and their carers receive the care and support they need.”

The Ombudsman made a number of recommendations, all of which Hywel Dda University Health Board accepted. These included:

• Taking immediate steps to progress its plans to implement a clear and accessible LD Epilepsy care pathway to ensure all patients can access care suited to their needs. The Health Board should obtain an external professional clinical review to check the pathway and proposed provisions are adequate.

• Setting clear timescales for all action plans, with Board oversight to monitor progress.

• Issuing apologies to the seven complainants for poor communication and the lack of specialist alternative provision following the closure of the LD Epilepsy Service.

• Providing detailed updates to each of the seven complainants on their relatives’ current care, including responsibilities for monitoring, care reviews, risk plans, and points of contact.

• Reviewing all LD epilepsy patient lists to confirm care plans, risk assessments, and emergency medication plans are up to date, ensuring no patient is overlooked or awaiting neurology appointments, with Board oversight of the audit.