‘My son spent his last day begging for medication due to NHS 111 failures’

The mother of a man who died without his epilepsy medication despite desperate calls to his GP and 111 has called for urgent out-of-hours NHS reform. Charlie Marriage suffered a fatal seizure when he ran out of medication to manage his epilepsy one weekend while isolating during the Covid pandemic. He made several attempts to access his drugs over two days in June 2021 via his GP and NHS 111 without success, an inquest into his death was told. His mother, Henrietta Hastings, fears others who find themselves without essential medication outside of GP hours today could face the same fate as her son.

Calls on priority for 'cliff edge' conditions

She is calling for epilepsy and other “cliff edge” conditions that can be fatal but are not immediately life-threatening – as such as diabetes and asthma – to be given top priority by medical call handlers. She said millions of people are living with conditions where they can “sound perfectly OK” during calls to NHS 111 but can deteriorate or die suddenly. “The way that 111 has been set up means that somebody in Charlie’s situation tomorrow morning say, out-of-hours, would just as likely die as Charlie. And that’s unnecessary and tragic and it is happening to people,” she said. (Photo: PixelsEffect/Getty)

Encouraged to isolate

Mr Marriage, 32, had been told to isolate by NHS Test and Trace on Thursday 24 June, 2021. The occupational therapy Masters student, who was diagnosed with epilepsy when he was 14, took the advice in the Covid alert seriously. But he realised by isolating he would be without his medication over the weekend as his prescription had been delivered to his university campus pharmacy – not his local pharmacy in Camberwell, south London, where he was staying. He called his GP surgery the following day to request an emergency supply of Fycompa 8mg tablets to cover him until the pharmacy reopened on Monday and arranged for a friend to collect his medication. (Photo: Matt Cardy/Getty)

Prescription request in writing

The drug and dosage had helped him manage his epilepsy for two years, with Ms Hastings saying he felt it was a game-changer. Mr Marriage was told by GP staff he would receive a call back and Ms Hastings said he phoned a number of times to chase the progress and was eventually told in the afternoon that he would need to submit a prescription request in writing. However the GP surgery then closed for the weekend, leaving Mr Marriage without access to his medication. His mother advised him to call NHS 111. She claimed that he explained his situation to a number of call handlers over five separate calls to the 111 line during which he was told he would be able to collect his medication from a Superdrug pharmacy. (Photo: Dinendra Haria/SOPA Images/LightRocket via Getty)

'Charlie's approach necessitated moving away from stress'

Ms Hastings met her son at the shop as he was too anxious to enter and said the pair tried for two hours to get hold of his medication, unaware the pharmacist could not access the system needed to fulfil the NHS 111 emergency prescription service. They later discovered the pharmacy did not have Fycompa, also known as Perampanel, in stock. “He had got very, very stressed at the morning while at the chemist,” Ms Hastings told The i Paper. “Charlie’s whole approach to life necessitated moving away from stress. So when he recognised he was starting to get stressed he would try and step back from the situation to unwind any stress that was building up.” (Photo: Chris Ratcliffe/Bloomberg via Getty)

A fatal seizure

Witnessing the toll trying to get hold of his medication was having on him while he waited for a doctor to call, Ms Hastings said she arranged for them to check his girlfriend’s flat for leftover tablets. Mr Marriage found two, out of date, lower dose Fycompa pills, which he took believing they would be enough to get him by. When he received a call from an NHS 111 call handler later on asking if he still wanted a doctor to call him, he said no. It is believed that just 90 minutes later, while at home alone, he suffered a fatal seizure. Ms Hastings believes the last day of her son’s life was ruined by the stress of trying to get hold of his epilepsy tablets. She wants the inquest into her son’s death to lead to major changes to how NHS 111 handles calls like his. “Charlie spent the last morning of his life begging for medication,” Ms Hastings told the coroner’s court. (Photo: Supplied)

Epilepsy: Affects 625,800 of UK residents

She said she told NHS 111 at the time that she thought there was a risk that her son would die if he didn’t get his medication. However she was not aware of precisely how vulnerable he was to sudden death in epilepsy (SUDEP). A total of 625,800 people in the UK have epilepsy and various types of medicines patients take to manage the condition have been affected by supply issues over the past couple of years. The risk of SUDEP increases for patients who do not take their prescribed medication even for a short time. NHS emergency calls that are categorised as level three and four are deemed urgent but non life-threatening. Responses to level three calls may include treatment at home, while level four calls can be given advice over the telephone or referred to another service such as a GP or pharmacist. Category one is for calls where people have life-threatening injuries or illness such as cardiac arrest. Category two is for emergency calls such as stroke patients. Both of these calls flagged to be responded to within seven and 18 minutes, respectively. (Photo: Shutterstock)

'It was critical'

“Charlie was assigned level three, which means that nobody has to do anything for essentially up to two hours, but if there’s a lot of demand on the service, the service is allowed up to four hours to do nothing,” Ms Hastings said. “Anybody with a ‘cliff-edge condition’ where their life could be impacted if they don’t get medication urgently should be in category one, not three or four.” Sammy Ashby, CEO of charity SUDEP Action, said: “If someone’s medication regime is disrupted because they are unable to get access to their prescription medication in an emergency, there is a real risk of seizures and SUDEP. Tragically, in Charlie’s case, the specific medication he needed was critical – and without it his seizures were not controlled. All NHS 111 call handlers should know – and treat – a request for epilepsy medication as an urgent, potentially life-threatening situation.” (Photo: Supplied)

A comprehensive investigation

The charity is calling for a comprehensive investigation of the NHS 111 service. Ms Hastings said the most important thing that could come out of this is for Wes Streeting and NHS leaders to acknowledge that “NHS 111 isn’t currently able to offer an effective out-of-hours service to people who need emergency medication and that that needs to be changed”. Superdrug said: “Our thoughts and condolences are with Mr Marriage’s family. The safety and well-being of our patients remains our top priority. We take all necessary steps to ensure the highest standards of service are upheld at all times. We are continuing to cooperate fully with the inquest. We are unable to comment further until the inquest has concluded.” DHU Healthcare, which runs NHS 111, declined to comment. (At the time of first publication, December 2024, the coroner was expected to deliver his verdict in the case after Christmas.) (Photo: Chris Radburn/PA)