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The Public Services Ombudsman for Wales has upheld seven separate complaints against Hywel Dda University Health Board for failing to care adequately for epilepsy patients with a learning disability.
The families complained about a specialist epilepsy service stopping abruptly in June 2021 without an adequate replacement and no plans in place to meet the needs of these epilepsy patients with learning disabilities within the Health Board.
Upholding the complaint, the Ombudsman expressed concern at the Health Board’s failings, which affected ‘a very vulnerable group of patients.’
It has made several recommendations, which the Health Board accepted, including implementing a clear Learning Disability Epilepsy Care Pathway accessible to all patients within its area and apologising in writing to each of the seven complainants.
The Ombudsman also recognised that the number of families affected would go beyond the seven who complained. Therefore, the Health Board has been given four months to conduct a thorough review of its learning disability epilepsy patient lists to ensure that they all have up-to-date care plans, risk assessments, and emergency medication plans in place.
This includes learning disability epilepsy patients who have been missed or are currently still waiting for a neurology appointment.
Abandoned and unsupported without an epilepsy service
The Health Board accepted that it was not able to continue the service after the departure of the Specialist Consultant in June 2021, and currently did not provide a Specialist LD Epilepsy service.
The result of this has been considerable additional pressure on carers, GPs and other support staff.
Public Services Ombudsman for Wales, Michelle Morris, said that the lack of service provision, poor communication, and slow response to complaints had caused significant distress, with carers feeling abandoned and unsupported, unsure who to contact for advice or assistance, while having to navigate a lengthy complaints process with no clear outcome.
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She added: “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.”
Failed in care for people with a learning disability
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’.
“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 families have been supported in the complaints process by SUDEP Action, which is the only UK charity supporting those whose loved ones have died suddenly from an epilepsy-related death.
