A much-loved brother and uncle from Darlington died after drinking alcohol whilst on an antipsychotic medication - and now his family are campaigning for change in medical guidelines. 

Sean Crawford, 41, from Darlington, described by his family as a "gentle giant" was found dead in his flat by police in December 2020. At an inquest that concluded last week, the coroner gave a narrative verdict that it was the unpredicted toxic effects of his antipsychotic drug, clozapine, combined with alcohol that killed him. 

At the time of his death, Sean had struggled with paranoid schizophrenia for more than two decades and had been taking clozapine for most of this period, sometimes while drinking alcohol. 

The senior assistant coroner for County Durham and Darlington, Crispin Oliver, has criticised the mental health trust that cared for Sean, as well as national healthcare guidelines, as neither Sean nor his family were told of the risk of death that drinking whilst taking clozapine produced. 

The Northern Echo: Sean with his sister-in-law Nichola and his nieces.

In fact, the inquest heard that Tees, Esk and Wear Valleys NHS Trust (TEWV) staff believed that continuing drinking whilst on the medication was "not entirely a bad thing", and could help Sean with feelings of paranoia and anxiety.

Sean's nursing associate reported that in the run-up to his death, he had been drinking four to six cans every two to three days.

Now, the family have said that they believe a combination of "red flags" were missed by professionals, causing "the perfect storm" that robbed them of their brother and uncle. 

The Crawfords are on a "relentless mission" to help equip fellow paranoid schizophrenics and their families with the knowledge they sadly did not have, and ensure that physical health is monitored alongside mental health, so toxicity warning signs are not missed. 

Though the inquest heard that death from the combined effects of clozapine with alcohol was "statistically almost vanishingly rare," with none of the professional witnesses called to take the stand having seen a similar case, the coroner concluded that a lack of national healthcare guidance on the drug was "baffling". 

The Northern Echo: Sean with his brother Allan, sister-in-law Nichola, and his nieces.

He noted that although medication packaging says it is not to be taken with alcohol, neither advises that death could be a possibility.

He concluded: "All the literature advises that sedation is a potentially dangerous side effect of clozapine. It is, as they say, hardly rocket science to infer that over-sedation is, at an extreme, potentially fatal. 

"In effect, all that is needed is a case in which the wrong combination of lifestyle, alcohol consumption, metabolic rate, body mass and prescribing levels come together and death is a real risk.  That is precisely what happened to Sean."

At the time, the was no guidance on TEWV's policies on the drug (which reflected a wider lack of advice on the danger of death from NICE, the MHRA, or the British Formulary) though a spokesperson from the Trust told The Northern Echo that this had changed since Sean's death over three years ago. 

The coroner added: "The physical danger associated with alcohol consumption in the context of clozapine was never appreciated by Sean, or his family or TEWV staff.

"It is evident that there is no guidance in the Trust’s policies, but also seemingly no academic literature, British National Formulary, or NICE or MHRA advices on the dangers of death in this scenario."

Sean's family have said they "would definitely have been able to talk to him about alcohol", and believe that if "we had been given all the information, Sean would still be here".

Older brother Allan Crawford and sister-in-law Nichola have been left "devastated" by the loss of beloved Sean.  

They told the inquest: "Sean was a pivotal cog in our family…a brother, a brother-in-law, an uncle, a son.

"Sean was the best uncle any parent could wish for their children.

"Praise was not something Sean found hard to give, whether it was for eldest niece Hannah’s driving skills, her exam results, Head Girl appointment or Charlotte (his youngest niece) writing her name for the first time; the sense of pride he felt was clear."

Speaking to The Northern Echo, Nichola said: "There is so much more to this than just alcohol, and I'd recommend everyone to research the medicine they are taking."

The "dangerously inadequate" state of TEWV data recording was also criticised by the coroner, as it meant that there was no "proper and effective" monitoring of physical health data for most of 2020, with results from Sean's physical tests rarely recorded - which was deemed "inherently dangerous".

The family are concerned that poor record-keeping meant "red flags" and signs of toxicity were missed by the healthcare professionals looking after Sean. 

In the run-up to Sean's death, he had been having recurring urine infections and had recently been prescribed pregabalin, which is typically used to treat epilepsy and anxiety. 

Guidelines from the National Institute for Health and Care Excellence (NICE) outline that pregabalin could increase a patient's clozapine level if they are on both, and adverse effects should be monitored. 

Nichola said: "We believe it is these levels that meant his central nervous system was suppressed in a way that it hadn't been previously as Sean wasn't doing anything differently on the day he died in terms of the alcohol.

"He did however have an infection, his pregabalin had been increased and we have question marks over the role of caffeine.

"This was a 'perfect storm', that has devastated our family."

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The inquest heard that in the TEWV area, about 1,000 patients are on clozapine, with 63 in the Darlington area. 

Beverley Murphy, chief nurse at TEWV, said: "We have worked closely with Sean’s family to listen to their concerns and our thoughts go out to them at this incredibly difficult time. We are deeply sorry for their loss. 

“Since his death in 2020, we have reviewed Sean’s care and treatment and we are committed to making changes to provide the best care for our patients. This includes strengthening our processes for Clozapine prescribing, dispensing, supplying and monitoring and we have made a number of changes to the Clozapine guidance.”