Hywel Dda University Health Board failed to adequately care for epilepsy patients with a learning disability, a damning investigation report from the Public Services Ombudsman for Wales has found,

A complaint brought by seven families in mid and west Wales – all of whom had adult children who had been using a specialist service that stopped abruptly in June 2021 – has been upheld by the Ombudsman Michelle Morris.

The families complained that the Health Board failed to make adequate provision for care after the service ended – and that four years on, there were still no plans in place to meet the needs of these epilepsy patients with learning disabilities within the Health Board.

Many of the patients have multiple complex needs and are at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP).

Upholding the complaint, the Ombudsman expressed concern at the Health Board’s failings, which affected ‘a very vulnerable group of patients.’

Marie James, one of the mothers who brought the complaint against the Hywel Dda University Health Board said she felt ‘relieved’ at the Ombudsman’s findings and recommendations.

Marie cares for her adult son Trystan at home.

Trystan has a genetic disorder which means he experiences daily seizures and weekly tonic-clonic seizures.

She said: “Since June 2021 the Health Board has failed to provide access to appropriate health care for our loved ones with epilepsy and learning disability.

“We were left without any signposting or direction, a total failure of service.

“It made us feel the responsibility was totally on our shoulders to make sure we were providing the best epilepsy care that we could.”

Marie said she and the other mothers tried to work with the Health Board to find solutions but found the responses ‘disheartening’.

She added: “The seven of us mums know that to a degree, we can advocate for our children, but anyone of us at any stage could be faced with managing new or emergency situations or see our sons or daughters in supported living environments, tomorrow.

“That is the real fear that has driven us to ensure that there is a service that meets the needs of all vulnerable adults with epilepsy and a learning disability.”

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,” the report found.

“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.

The Ombudsman made a number of recommendations, which the Health Board accepted.

The Health Board must now implement a clear Learning Disability Epilepsy Care Pathway, which is accessible to all patients within its area, “to ensure all patients can access care suited to their needs.”

The Health Board should also “obtain an external professional clinical review to check the pathway and proposed provisions are adequate.”

The Ombudsman asked to be updated on actions taken within four months.

The Health Board was also instructed to apologise in writing – within two months – to each of the seven complainants, for their lack of communication and alternative care plans, following the end of the LD Epilepsy Service.

Hywel Dda was also ordered to provide “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.”

Recognising that the number of families affected goes beyond the seven who brought the complaint, the Health Board has been given four months to conduct a thorough review of its LD epilepsy patient lists – to ensure that they all have up-to-date care plans, risk assessments and emergency medication plans in place.

This includes LD epilepsy patients who have been missed or are currently still waiting for a neurology appointment.

The action plans to address the service failure should have “clear timescales” with “Board oversight to monitor progress.”

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.”

Sharon Daniel, Director of Nursing, Quality and Patient Experience at Hywel Dda University Health Board said: “We acknowledge the findings of the Ombudsman’s report and we are deeply sorry for the distress and upset caused to Learning Disability epilepsy patients and their carers.

“This is not how we want to perform as a Health Board and will strive to do better.

“We recognise that the way that we approached the removal of the specialist Learning Disability Epilepsy service and the way in which we dealt with patients’ complaints has led to a break down in trust in the Health Board and we must rebuild this trust with patients and carers.

“We accept the Ombudsman’s recommendations and have started working on ways we can improve.

“We have appointed a Learning Disability Epilepsy Nurse Specialist (LDENS) to support patients and a Learning Disability Pharmacist who works alongside our Community Team for Learning Disabilities and LDENS.

“We are also working on a Learning Disabilities Service Improvement Plan and are developing a new service model which will ensure that people with learning disabilities receive fair, equal and person-centred access to health care.”

SUDEP Action – a charity that aspires to stop preventable deaths from epilepsy – worked with the families to support their complaint against the health board.

Jane Hanna, SUDEP Action Director of Policy & Influencing, said: “Our role was to be alongside the families to support their fight. We were so pleased that the Ombudsman made such strong recommendations with clear timelines and that our request for an independent expert to review future actions by the Health Board was in the final report.”

Marie thanked the charity for their help in bringing the complaint, and the support they have given for her son and other families.

“We’re greatly indebted to SUDEP Action for many things,” she said.

“Trystan’s life has been enhanced because of their support and risks have been reduced.”