The family of a mum who died after a suspected epileptic seizure have said she missed out on care weeks earlier because of a 14-hour wait. Paige Ellis, 28, was six months pregnant with son Harri when they died on July 23 at her Barry home.
Her death came after another pregnant Barry woman, 25-year-old Megan Gardiner, died on June 4 following a suspected epileptic seizure. Both women had recently been given new epilepsy medication by University Hospital of Wales in Heath. Their families have joined forces to "fight for answers" as the Cardiff and Vale health board carries out a formal investigation.
Paige was engaged to Dan Dredge, 29, and they had a two-year-old son called Jax. Dan has now told WalesOnline of his concern over an incident which he said happened about a couple of weeks before Paige's death. The mum had hurt herself in a fall during a seizure and an ambulance had taken her to the Heath hospital, but no bed was available when they arrived, said Dan.
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"We sat in the ambulance outside the hospital for about six hours," he said. "The ambulance driver told us, 'You can stay here but you could be waiting another eight hours.'"
Dan said Paige chose to avoid a 14-hour wait and instead accepted the ambulance driver's offer to take her to Barry Hospital, which is run by the same health board. He added: "That was it. She just had a scan on her foot, which she'd hurt when she fell. They never actually checked on her epilepsy at all."
The following week Paige had another seizure, though it was less severe and did not cause her to fall because she was in bed at the time, so she did not go to hospital. Dan said the thought of another long wait was in her mind at the time.
Around a week later Paige died following a suspected seizure while in bed. Dan said it was unusual for her to experience three seizures in a few weeks, and she would normally only have about two a year.
"I just want answers," he added. "I want to make sure she was getting the most care she could have and I don't want there to be any people out there who have no idea they're not getting the right care."
Paige did not have any appointments for her epilepsy in the weeks after the wait outside University Hospital of Wales, said Dan. Some weeks before then, the hospital had switched her medication, he said.
Paige's family say their understanding is that she received a similar change in prescription to the one Megan Gardiner was given. Megan had been taking three medications — Lamotrigine, Brivaracetam and Zonisamide — before she and her mum Alison attended an appointment at the hospital around two weeks before Megan's death. Alison said they were told that there was no risk to Megan's baby from using Lamotrigine and Brivaracetam but that the research around Zonisamide was not clear.
Megan took the medical advice of upping her dosage of Lamotrigine and tapering off the Zonisamide. She had "wanted to do the best she could for her baby", said Alison.
Next week the families will together meet health board representatives. They have been told the investigation is expected to be complete in October.
Alison, a 51-year-old social worker, said: "To know that another family from Barry have gone through exactly the same thing, my blood ran cold. I just couldn't believe another family were having to go though this loss and it made me doubly sure I wanted to fight for answers."
The former Barry town councillor said her daughter was a "thoughtful and caring soul" who would often protest over social issues. "Meg would be by my side fighting this, helping with getting information and doing anything necessary on social media if we were campaigning to support anyone else," she said.
Alison feels Megan received "very generalised advice" from the hospital. She claimed that one of Megan's recent hospital notes said she had myoclonic seizures, despite her only having a different kind — t onic - clonic seizures.
Alison was also left concerned by a conversation her daughter reportedly had with a member of the hospital's epilepsy team. In an email to the investigating consultant, Alison said: " [The team member gave] an example that most people have seizures where they fall back, so they would suggest use of pillows on her lap when feeding the baby. I interjected and advised that Megan does not have seizures like that, as she usually stands up and falls forward, so doing this could cause the baby to be suffocated or dropped to the floor. Where was the understanding of how epilepsy affected Meg?"
Paige's brother Luke Donnelly, 34, said: "Our concern is this is two young girls, both epileptic, both treated at Heath hospital, both pregnant and both from Barry. Even if there's nothing to it, at least we can hold our hands up and say we fought for answers for Paige."
Jane Hutt, MS for the Vale of Glamorgan, wrote to the health board raising her concern after being contacted by Alison. In its response, the health board said the case is being "reviewed as a Nationally Reportable Incident".
Under the health board's definition, a Nationally Reportable Incident is: "A patient safety incident which caused or contributed to the unexpected or avoidable death, or severe harm, of one or more patients, staff or members of the public, during NHS funded healthcare."
A spokesperson for Cardiff and Vale health board told WalesOnline: “Our thoughts are with the families at this incredibly sad time. The concerns are being reviewed in line with our governance process but due to patient confidentiality we are unable to comment on individual cases.
“Once completed, the investigation findings will be shared with the next of kin and based upon preliminary review we have not identified any immediate care and treatment concerns. We appreciate how difficult this time is for family and loved ones however if the families wish to discuss anything further we would ask they speak with their named point of contact.”
You can read our tribute piece to "fun-loving, kind" Paige here and our tribute piece to "sweet" and "full of life" Megan here.
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