Stephen Leven · Prevention of Future Deaths report

Stephen Leven died, aged 56, on 13 December 2016 from an intracerebral haemorrhage. The inquest into his death concluded on 10 May 2017; I recorded a conclusion of natural causes.

Mr Leven had a significant past medical history of haemophilia for which he had been undergoing treatment at the Royal Free Hospital. He carried with him a card provided by this hospital, which set out the diagnosis and was intended to be presented to healthcare providers to inform them of the potential significance of the disease, as it related to other medical conditions.

I heard from Mr Leven’s partner that she was not aware of his haemophilia diagnosis, despite having lived with him for a number of years.

In early December 2016 Mr Leven developed a headache and changes to his visual field. On 7 December he presented to an optician who confirmed that there was a deficiency in his visual field and recommended that he present urgently to his GP for onward referral. Instead Mr Leven attended A&E that evening. He did not disclose to the A&E department his haemophilia diagnosis, nor did the clinicians there have access to GP information that would have contained information regarding this diagnosis.

CT scanning demonstrated a large intracerebral haemorrhage and, after a deterioration which resulted in him being intubated and ventilated, he was transferred to a neurosurgical centre. I heard evidence from the neurosurgical consultant who treated Mr Leven that they also did not have access to GP records.

Mr Leven underwent a neurosurgical procedure to treat the brain haemorrhage. As this procedure was finishing, information was provided by members of Mr Leven’s family that he had haemophilia. Appropriate treatment was provided but, unfortunately, he did not recover substantially. He died on 13 December 2016.

I heard evidence from the treating neurosurgeon that the fact Mr Leven did not disclose his haemophilia diagnosis did not cause or contribute to his death. This is one of the reasons I concluded that his death arose from natural causes.

However, I was concerned that the treating clinicians did not have access to GP records which recorded the diagnosis of haemophilia. This is related to an issue I raised with the Department of Health in October 2015 (see attached report). The response (see attached) set out that access to the ‘Summary Care Record’ (SCR) was due to be implemented for ‘hospital acute admissions’ by March 2016. The response also stated that the provision of ‘enhanced summary care records’ was being developed, which would allow access to ‘special patient notes’.

I am concerned that, in different circumstances, the lack of access to GP information regarding Mr Leven’s diagnosis of haemophilia, could have caused or contributed to his death. As such, I am concerned that deaths could occur in future similar circumstances if further action is not taken to facilitate secondary care access to GP records.