Prevention of Future Deaths reports · 2017

Stephen Leven

Regulation 28 report to prevent future deaths, reference 2017-0158, written 15 May 2017. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report15 May 2017
Reference2017-0158
DeceasedStephen Leven
CoronerR Brittain
Coroner areaLondon (North)
CategoryHospital Death (Clinical Procedures and medical management) related deaths
Sourcejudiciary.uk record · original PDF
Responses published1

The report

Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.

REGULATION 28:  REPORT TO PREVENT FUTURE DEATHS 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

THIS REPORT IS BEING SENT TO: 

The Rt Hon Jeremy Hunt MP, Secretary of State for Health, Department of Health, 
Richmond House, 79 Whitehall

, London.  

1 

CORONER 

I am R Brittain, Assistant Coroner for Inner London North. 

2 

CORONER’S LEGAL POWERS 

I make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009
and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013. 

3 

INVESTIGATION and INQUEST 

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.  

4 

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.  

1 

 
 
 
 
 
 
 
 
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 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’.  

5 

CORONER’S CONCERNS 

During the course of the inquest the evidence revealed matters giving rise to concern. In 
my opinion there is a risk that future deaths will occur unless action is taken. In the 
circumstances it is my statutory duty to report to you. 

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.   

 6  ACTION COULD BE TAKEN 

In my opinion action could be taken to prevent future deaths and I believe that the
addressee, has the power to take or may be actively undertaking such action.  

7 

YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of the date of this report,
namely by 10 July 2017. I, the coroner, may extend the period. 

Your response must contain details of action taken or proposed to be taken, setting out
the timetable for action. Otherwise you must explain why no action is proposed. 

8 

COPIES and PUBLICATION 

I have sent a copy of my report to the Chief Coroner, Mr Leven’s family, Royal Free
Hospital, North Middlesex Hospital and the National Hospital
for Neurology and
Neurosurgery.  

I am also under a duty to send the Chief Coroner a copy of your response.  

The Chief Coroner may publish either or both in a complete or redacted or summary
form. He may send a copy of this report to any person who he believes may find it useful
or of interest. You may make representations to me, the coroner, at the time of your
response, about the release or the publication of your response by the Chief Coroner. 

9 

15 May 2017  

2 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
​
​
 
  
 
 
 
 
 
 
 
 
 
 
 
 
   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
   
 
 
 
 
 
 
 
 
 
 
 
   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 Assistant Coroner R Brittain 

3

Responses

1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from Respondent Not Named (PDF)
AG} Rt Hon Alistair Burt MP
Minister of State for Community and Social Care

Department
of H ealth Richmond House
79 Whitehalf
London
SWI1A 2NS

POC00001002339

“_™ Tel: 020 7210 4850
Mr R. Brittain

Assistant Coroner

St Pancras Coroners Court

Camley Street 02 DEC 2015
London

NIC 4PP

Dew (NG Gre Hrucn |

Thank you for your letter of 7 October 2015, following the inquest into the death of
Edward Gascoigne. I was 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 key information that follows the patient through the
healthcare system.

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 taking the medication regularly.

ae

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
key 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 111 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 111, 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.

T 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’s 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.

Fon neh Ah

ALISTAIR BURT —~

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