Stephen Leven

PFD Report All Responded Ref: 2017-0158
Date of Report 15 May 2017
Coroner R Brittain
Coroner Area London (North)
Response Deadline ✓ from report 10 July 2017
All 1 response received · Deadline: 10 Jul 2017
Coroner's Concerns (AI summary)
The lack of access for secondary care to crucial GP patient information, specifically a haemophilia diagnosis, poses a significant risk of future preventable deaths.
View full coroner's concerns
The ​MATTERS OF CONCERN​ are as follows:

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.
Responses
Stephen Leven
Action Planned
The response outlines the Summary Care Record (SCR) system and NHS England's plans to mandate SCR access for 111, 999 services, and hospital acute admission areas by March 2016, including end-of-life and advanced care plans. It also mentions the development of an enhanced summary care record with greater access to patient care plans, special patient notes, and mental health crisis notes. (AI summary)
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Rt Hon Alistair Burt MP Minister of State for Community and Social Care Department of Health Richmond House 79 Whitehall London SWIA 2NS POCOOOO1002339 Tel: 020 7210 4850 Mr R Brittain Assistant Coroner St Pancras Coroners Court Camley Street 0 2 DEC 2015 London NIC 4PP Dex m &le : Thank you for your letter of 7 October 2015,following the inquest into the death of Edward Gascoigne: Iwas sorry to hear of Mr Gascoigne's death and wish to extend my condolences to his family. This case highlights issues about the sharing of patient information within the NHS. You are rightly concerned about access to patient'_ s GP records by treating clinicians and indicated that you feel that the current system of record sharing in the NHS will pose risks to patient care: It is vital that the effective treatment of patients is underpinned by timely and appropriate transfer of information that follows the patient through the healthcare The current system of sharing GP patient records is via the Summary Care Record (SCR) To date; more than 96% of people in England have had SCRs created and uploaded onto the NHS National Spine; a national infrastructure that stores electronic patient information: SCRs contain information sent electronically from the GP record to be held securely on the National Spine Core data in all SCRs comprises: details of Medications (Long-term, Acute and recently discontinued); known Allergies and Adverse Reactions This information is kept up-to-date in real time. In most SCRs, the Core data also contains the *date of last issue' of medications, which gives an indication of whether the patient is the medication regularly: key system: taking

Department of Health for use by commissioners for all contracts for healthcare services other than primary care). To quote the relevant section: '23.6 Subject to General Condition 21 (Patient Confidentiality, Data Protection, Freedom of Information and Transparency) the Provider must ensure that all Staff involved in the provision of urgent, emergency and unplanned care are able to view Service User clinical information from GP records, whether via the Summary Care Records Service or a locally integrated electronic record system supplemented by the Summary Care Records Service. In addition, NHS England's business plan for 2015/16, which sets out priorities for the coming year; has mandated SCR access for 11l services, 999 services and hospital acute admission areas. To quote from the section, Commitments for redesigning urgent and emergency care services: 'By March 2016 complete information sharing across 1ll, 999 and hospital acute admission areas to at least a minimum of Summary Care Record, including end of life and advanced care plans. Furthermore, NHS England is working with partners to develop a range of tools and guidance to support commissioners and providers in the transformation of urgent and emergency care services. This includes the development of an enhanced summary care record which will enable greater access to patient care plans, including end of life care records, special patient notes and mental health crisis notes [ hope I have reassured you that Government plans for sharing of patient information is a priority for urgent and emergency care and that the current SCR system is designed to improve access to patient'$ GP records so that important and vital patient information is available to all treating clinicians. I am grateful to you for bringing the circumstances of Mr Gascoigne's death to my attention and trust that you find this reply helpful. AL seix Acl(4 ALISTAIR BURT key
Sent To
  • Department of Health and Social Care
Response Status
Linked responses 1 of 1
56-Day Deadline 10 Jul 2017
All responses received
About PFD responses

Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.

Source: Courts and Tribunals Judiciary

Report Sections
Investigation and Inquest
Stephen Leven died, aged 56, on December 2016 from an intracerebral haemorrhage. The inquest into his death concluded on 10 May 2017; I recorded a conclusion of natural causes.
Circumstances of the Death
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 substantively. He died on 13 December 2016.
Copies Sent To
Hospital, North Middlesex Hospital and the National Hospital for Neurology and Neurosurgery
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.