Health board criticised over closure of epilepsy service for patients with learning disabilities

Hywel Dda University Health Board failed to provide adequate specialist care for epilepsy patients with learning disabilities after shutting down a dedicated service in 2021, a new report by the Public Services Ombudsman for Wales has found.

The Public Interest report, published today (9 October), concludes that four years after the Learning Disability Epilepsy Service was closed, there is still no clear pathway for patients with complex needs, leaving carers struggling to access support and treatment.

The investigation was launched following a complaint from Ms A, who represented seven families whose adult children had used the service. The group said the health board left patients without adequate care after the service ended, despite their higher risk of Sudden Unexpected Death in Epilepsy (SUDEP).

Reviews

The Ombudsman found that the board failed to carry out timely reviews of patients’ needs or put in place proper alternatives when the service ended in June 2021. Some patients have since had to travel outside the health board area to access specialist provision.

While the health board did commission an external review, the Ombudsman said progress towards implementing its recommendations had been “slow” and current provision remains fragmented. The report also noted that Hywel Dda had been criticised in 2021 for similar failings around service planning.

Public Services Ombudsman Michelle Morris said the lack of communication and provision had caused “significant distress” to carers, who described feeling “abandoned and unsupported”.

“The sudden removal of a key support system has only added to their stress,” she said. “This represents a serious injustice to patients and their families. The health board must now take urgent action to ensure these vulnerable patients and their carers receive the care and support they need.”

Recommendations

The Ombudsman issued a series of recommendations, all of which the health board has accepted. They include:

Immediate steps to implement a clear and accessible care pathway for LD epilepsy patients, with external clinical review to ensure adequacy.

Clear timescales for action plans, with board-level oversight.

Formal apologies to the seven complainants, alongside detailed updates on their relatives’ current care and points of contact.

A full review of all LD epilepsy patients to ensure care plans, risk assessments and emergency medication plans are up to date.

The Ombudsman said she remains “mindful that others may be experiencing similar failings” and urged the health board to act swiftly.