SUDEP Action

Making every epilepsy death count
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Our sister, Julie Todd, died in June 2019 at the age of 55. She loved life and was completely family orientated. She was one of five siblings with four nieces, three nephews, four great nieces and a great nephew. She had a huge number of friends too.

When she was young she wanted to be a PE teacher, but her school records and exam results did not allow her to follow her ambition – she was often told off by teachers for daydreaming. Her epilepsy diagnosis did not come until after her school years. Julie worked as a Civil Enforcement Officer (what used to be a traffic warden) with 35 years’ service. Her working life was a physically hard one, with shift work and unsociable hours – also knowing that she could be an unwelcome sight to people about to get a ticket.

In the months before she died, she was starting to get on an even keel. She had just bought a car – her driving licence was incredibly important to her and even though she didn’t own a car until 2018, she kept her licence up to date. If she had a seizure she told the DVLA and would apply for her licence to be reissued as soon as this was safe and possible. She was planning holidays and had arranged a trip to China for her birthday in November and had a bucket list of activities for her longed-for retirement when she was 60.

Her sudden death at home completely shocked all of us. Our parents had recently passed and we all experienced a big step backwards into grief after this.

Her death also raised a lot of questions. We know that she had just one hospital appointment (which was to diagnose epilepsy) and then she was prescribed two types of medication which she was on for many years. At some point, the second drug was no longer prescribed and we’re not sure why. There were also concerns about the effect of being on these old-style anti-epilepsy drugs for so long – she was starting to suffer side effects, yet she wasn’t transferred to the newer medication. So, we gave our questions to the coroner. 

The coroner was involved because Julie died suddenly. At first, the pathologist didn’t think it could be SUDEP or epilepsy related. He assumed Julie was not having any seizures. This was partly because of his contact with the GP practice who unfortunately did not know what was happening with Julie as her epilepsy hadn’t been reviewed at all. If we had been asked at this stage, we could have given detailed information about the pattern of her seizures. The pathologist was intending to conclude that the cause of her death was unascertained. We were really unhappy about the prospect of an unascertained conclusion.

Through SUDEP Action, we found more information about death in epilepsy and SUDEP. We understood that there is still a risk of SUDEP even if seizures are infrequent. We gave all the information to the coroner and pathologist. The coroner decided to hold an inquest. Both the pathologist and Julie’s GP attended as witnesses. Having reviewed the SUDEP information, the pathologist was convinced that Julie’s death was a SUDEP and her death certificate was updated accordingly.

We feel that, as her family, we did the right thing by getting involved and challenging the way the investigation was going so that justice was done for her. If we hadn’t, the cause of her death might never have been established. The inquest also meant we had an opportunity to raise questions about Julie’s epilepsy care – although the coroner’s remit is to find out how, where and when, they are keen for the family to get answers.

We wanted to understand whether she was she told about the (increased) risk of having seizures if she stopped taking one of her drugs? Was newer medication ever considered? When did her last epilepsy review take place and in what format? What was the risk of SUDEP and was this discussed with her? What was the care plan for her epilepsy?

The coroner advised the GP that he should provide us with answers after the inquest. The GP did try but was vague on most of our questions and unwilling to put anything in writing, so we realised we had no choice – we had to make a complaint. We didn’t want to make anyone a scapegoat, but we felt strongly that things needed to change in the epilepsy care being given at the practice.

We heard from NHS England in August 2021 that our complaint had been upheld. Since being discharged from her neurologist’s care in 2010 Julie had never had an epilepsy review – and guidelines for epilepsy care say there should be a yearly review for epilepsy patients.

The GP practice acknowledged their record-keeping was not sufficiently detailed – that if Julie had made an appointment about her epilepsy she would have been referred to a neurologist, but this did not happen. The care plan was to go to the GP if she had any issues. The drug reduction was approved at a neurologist’s appointment in 2010 but had not been reviewed or checked or monitored after this time. Julie was unaware of a) SUDEP; b) her epilepsy changes; c) that other health issues could be related to her epilepsy medication; or d) that she should have been having yearly reviews.

The GP practice held a Significant Event Analysis after the complaint was lodged. As a result of this investigation by NHS England, the GP practice now carries out yearly reviews and has a poster regarding epilepsy patients’ SUDEP risk in the GP practice reception.

As a family we are glad we acted, even though it was hard to do. Changes have happened and we feel we have done the right thing by Julie. We hope that by telling her story we might help other families and perhaps also prevent another family going through what we went through.

Tricia, Julie’s sister