Prevention of Future Deaths reports · 2014

Clare Cooper

Regulation 28 report to prevent future deaths, reference 2014-0345, written 25 Jul 2014. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report25 Jul 2014
Reference2014-0345
DeceasedClare Cooper
CoronerKaren Henderson
Coroner areaSurrey
CategoryCommunity health care and emergency services related deaths
Sourcejudiciary.uk record · original PDF
Responses published4

The report

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

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

THIS REPORT IS BEING SENT TO: 

1. 
2. 
3. 
4. 
5. 
6. 

– Woodlands Surgery 

– East Surrey Clinical Commissioning Group 
 Associate Director – Eating Disorder Services for Adults 
President – Royal College of Physicians 
 President – Royal College of Pathologists 

 Chair – Royal College of Psychiatry, Eating Disorders 

1 

CORONER 

I am Karen HENDERSON, assistant coroner for the coroner area of Surrey 

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 

On 11th July 2014 I commenced an investigation into the death of Clare Serena Anke COOPER, 24 years 
of  age.  The  investigation  concluded  at  the  end  of  the  inquest  on  11th  July  2014.  The  medical  cause  of 
death given was: 

1a. Addisonian Crisis 
1b. Undiagnosed Addison’s disease 

2. - 

My narrative conclusion was:  

Clare  died  from  the  consequences  of  Addison's  disease  when  opportunities  were  lost  with 
diagnosis and treatment which could have affected the outcome  
CIRCUMSTANCES OF THE DEATH 

4 

Ms Cooper was a previously fit and well young adult who had rarely troubled her GP throughout her short 
life.  She  presented  to  her  GP  in  May  2012  complaining  of  weight  loss  and  excessive  tiredness. 
Reassurance  was  given  but  little  evidence was  documented  to confirm  the symptoms were  explored  in 
depth by taking a history or undertaking simple measurements such as weight and other vital signs (HR, 
BP etc.) at the time or subsequently. However a blood test was ordered by the GP to assess Ms Cooper’s 
immune status, which was found to be normal.  

Ms  Cooper  presented  again  to  her  GP  surgery  in  September  2012  after  a  significant  ‘faint’  but  nothing 
relating to this was recorded in the notes (only treatment for a long-standing foot disorder). Ms Cooper 
further  presented  to  the  GP  practice  in  October,  November  and  December  2012  with  a  continuing  and 
increasing history of lassitude, difficulty in eating resulting in further unwanted weight loss and increasing 
anxiety. Latterly she chose to see a different GP as she felt her symptoms were not being taken seriously 
by  her  own  longstanding  GP.  Documentation  of  the  latter  consultations  were  scant  and  do  not  confirm 
there  was  an  in  depth  history  taken  to  assess  the  severity  and  nature  of  the  presenting  and  persistent 
symptoms. Whilst a body weight was measured at least once in December there was no indication of any 
other  measurement  of  her  weight  and  it  was  therefore  not  possible  to  quantify  the  proportion  of  weight 
lost. Vital signs (heart rate, blood pressure etc) were also not measured and I heard evidence that it may 
have shown significant evidence of a postural drop, which may have prompted further investigation.  

Ms Cooper had a blood test organised by the GP’s in November and a further three in December 2012. 
Whilst  she  had  a  normal  blood  sodium  in  November  2012  (136  mmol/l)  two  sequential  tests  in  quick 
succession  in  December  showed  an  isolated  low  blood  sodium  of  126  mmol/l.  A  further  blood  test  two 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 weeks  later  indicated  the  sodium  had  returned  to  normal  levels  at  136  mmol/l.  No  significance  was 
attached  to  the  low  sodium  levels  other  than  a  presumption  it  may  have  arisen  from  a  reduced  diet  or 
from vomiting which was mild (2-3 times a week). I heard expert evidence that Intermittent vomiting and 
food  restriction  would  not  ordinarily  cause  a  low  sodium,  particularly  when  all  other  electrolytes  were 
normal.  I  also  heard  evidence  that  an  isolated  blood  sodium  of  126  mmol/l  should  have  been 
independently investigated in its own right, particularly if there is an absence of common causes (usually 
in the elderly) such as prescribed medication and despite the fact it had ostensibly returned to normal. 

I heard evidence that there was no formal protocol in place at the GP surgery to ‘flag-up’ abnormal results 
and  no  system  in  place  to  assess  and  manage  electrolyte  abnormalities.  Equally  there  was  no  formal 
system in place for a clinical pathology service to highlight abnormal results to the relevant GP practice. 
In any event no other investigations were undertaken at the GP surgery to explore the possible cause of 
the  low  sodium  and  simple  measures  such  as  the  measurement  of  vital  signs  and  regular  weight 
measurements in the presence of weight loss were not undertaken. Also, no consideration was give to a 
referral  to  hospital  to  assess  whether  there  was  a  physical/organic  cause  of  her  symptoms  and/or 
hyponatraemia. As it was, the final ‘normal’ sodium was likely to have been falsely reassuring.  

I also heard evidence that there is a lack of clarity locally and nationally as to how low a blood sodium 
level  should  be  (either  consistently  or  intermittently)  before  requiring  assessment  and  investigation 
(although  it  was  agreed  a  level  of  126  mmol/l  fulfilled  the  criteria).  Also,  ‘clinical  practice’  medical 
textbooks  were  also  unhelpful  with  regard  to  the  management  of  low  blood  sodium  levels  with  little 
emphasis on looking for a clinic-pathological connection. Thus a young person with an intermittently low 
sodium  level  may  require  a  higher  index  of  suspicion  rather  than  individuals  with  underlying  medical 
conditions or on prescribed medication known to cause a low sodium level.  

At the same time, Ms Cooper’s lassitude was such she was signed off sick from work in November 2012 
and she did not work again. Again the significance of this was not explored. She was then referred to the 
Eating Disorder Service (EDS) in December 2012 although there was no evidence she was deliberately 
attempting to lose weight or worried about putting on weight. Ms Cooper was seen for triage at the EDS 
In January 2013 and she was found not to satisfy the criteria for an eating disorder. It was thought her 
poor  appetite  was  a  consequence  of  her  anxiety  although  a  cause  of  her  anxiety  was  not  examined  in 
detail.  A  physical  cause  was  not  considered  for  her  symptoms  other  than  a  thyroid  function  test  even 
though Addison’s disease is a rare but well recognised cause of weight loss and difficulty eating. She was 
discussed at a multidisciplinary meeting and it was decided to continue to care for Ms Cooper to develop 
strategies associated with her anxiety as a cause of her poor appetite. She was also prescribed Fortisip 
and on follow up her weight had increased by approximately 1kg confirming, in part, she had no fear of 
gaining weight. 

I heard evidence the proforma used for triage at the EDS was overly focussed on psychological causes 
rather than a possible underlying physical cause of the signs and symptoms of an eating disorder and it 
was without adequate prompts to obtain relevant information which may have prompted an investigation 
for  a  physical  cause  of  her  symptoms.  This  includes  no  clear  policy  for  screening  for  organic/physical 
illness or to have the full set of notes from the GP/clinical practice available at initial assessment. I also 
understand that this may be an issue nationally on a survey undertaken by the family of Ms Cooper with 
regard  to  EDS  proformas  from  various  institutions.  Also,  the  risk  assessment  form  for  all  mental  health 
services was not thought to be sufficiently reflective of the needs of the eating disorder clinic. 

Retrospectively her parents commented that she had developed a love of salty food (eating noodles at 
breakfast  covered  in  soy  sauce)  and  had  began  to  tan  easily  for  12-18  months  prior  to  death  but  the 
significance  was  not  understood  at  the  time  and  were  therefore  not  highlighted  to  the  medical  doctors 
caring  for  her.  Unfortunately  Ms  Cooper  continued  to  deteriorate  at  home  with  increasing  severe 
symptoms of lassitude, dizziness, nausea and difficulty eating. She sadly had a cardiorespiratory arrest at 
home  on  1st  February  and  despite  aggressive  resuscitation  after  emergency  admission  to  East  Surrey 
Hospital she died on 2nd February 2013 (not sure of the dates).  

I heard expert evidence that the constellation of signs and symptoms were such that it was highly likely 
Ms  Cooper  was  suffering  from  Addison’s  disease,  which  was  not  recognised  as  such.  I  concluded  her 
final admission into hospital and subsequent death was from an Addisonian crisis and that whilst it is a 
very rare disease, her underlying symptoms and signs in the presence of a low blood sodium level were 
such that they required independent investigation whether or not Addison’s disease was a consideration. 

1 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

 
 
 
 
 
 
 
 I also heard evidence that the diagnosis of Addison’s disease is difficult to diagnose at post mortem as 
changes to the adrenal gland may be subtle and as such there should be a higher index of suspicion in 
unexplained deaths in the young population to look for Addison’s disease rather than giving a cause of 
death as Sudden Adult Cardiac Death syndrome (which was the initial cause of death given at PM). I also 
received  evidence  that  pathologists  undertaking  coronial  post  mortems  can  be  supplied  with  all  the 
hospital  or  GP  notes  rather  than  relying  on  the  coroner’s  death  report  with  the  possibility  of  improving 
clinico-pathological correlation in cases where death is uncertain or unascertained.  

5 

CORONER’S CONCERNS 

During  the  course  of  the  inquest  the  evidence  revealed  matters  giving  rise  for  concern.  In  my  opinion 
there is a risk that future death 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: 

1.  Poor GP documentation  

2.  Lack of evidence of a robust assessment of presenting signs and symptoms with a presumption 

of a psychological/psychiatric problem without considering or excluding an organic cause.  

3.  Lack of GP routine vital sign monitoring e.g. heart rate, blood pressure and weight measurement 

when weight loss is a concern with a lost opportunity to assess the severity of weight loss. 

4.  No established system for recognition, assessment and management of electrolyte abnormalities 
within  the  GP  practice  and/or  consideration  of  the  chemical  pathology  service  to  ‘flag-up’ 
particularly concerning results.  

5.  Lack  of  understanding  of  the  underlying  causes  of  hyponatraemia  (consistently  or  intermittently 
low) and the level below which will require further investigation, and the investigations that should 
be carried out, particularly in circumstances when there is no obvious cause of the low sodium. 

6. 

7. 

Insufficiently detailed referral letter to EDS (mentioning ‘low sodium’ but not accompanied with a 
copy of the blood results) and an opportunity was lost for its significance to be considered 

Insufficiently robust EDS proforma used to triage patients for an eating disorder: lack of prompts 
and  a  need  to  emphasise  and  exclude  possible  organic  causes,  however  rare.  The  lack  of  a 
documented list of potential diagnoses to be assessed and excluded at triage, including organic 
causes. A need to facilitate communication from the referral agents to the eating disorder service. 

8.  The lack of a national protocol for assessing patients seriously ill with an eating disorder with the 

possibility of detecting individuals with an organic basis for the condition.  

9.  Lack of hospital or GP notes available for the pathologist undertaking the post mortem to facilitate 
a greater opportunity for clinic-pathological correlation in deaths which are unascertained and a 
higher level of suspicion to explore rare causes of unexpected death, especially in the young.  

10.  The need to highlight this case nationally to clarify published guidance with regard to the causes, 
investigation and treatment of low blood sodium and to reinforce the importance of excluding an 
organic basis of an illness before labelling the condition a psychiatric or psychological disorder. 

6 

ACTION SHOULD BE TAKEN 
In my opinion action should be taken to prevent future deaths and I believe the GP practice (Woodlands 
Surgery)  and  other organisations;  East  Surrey  Clinical Commissioning Group,  Eating  Disorder  Services 
for Adults - Surrey and Borders NHS Trust, Royal Colleges of Physicians, Pathologists and Psychiatry, 
Eating Disorders, have the power to take such action. 

2 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

 
    
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 7 

YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of the date of this report. I, the coroner, may 
extend this 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 and to the following Interested Persons;  

- Chief Medical Officer – Department of Health  

– NHS Medical Director, NHS England 
– Medical Director, Health Education England 
– President, Royal College of General Practitioners 
 – President, Royal College of Psychiatrists 
Chair, Joint Commissioning Panel for Mental Health 

 – Chair, Joint Commissioning Panel for Mental Health 

Professor of Endocrinology Oxford University, OCDEM 
– Consultant Psychiatrist in Eating Disorders 
– GP, Woodlands Surgery 

– Expert General Practitioner 

– Consultant Endocrinologist, Brighton & Sussex University Hospitals 

Medical Defence Union 
Medical Protection Society 
Medical Defence Union of Scotland 

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 

DATE:             25th July 2014                                         SIGNED:  Dr Karen Henderson 

3 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS

Responses

4 responses 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 Royal College of General Practitioners (PDF)
RC Royal College of

GP General Practitioners

Honorary Secretary

Dr Karen Henderson
HM Coroner for Surrey
HM Coroner's Court
Station Approach
Woking+

Surrey

GU22 7AP

27 August 2014

Dear Dr Henderson

Inquest into the death of Miss Clare Serena Anke Cooper — RCGP response

Thank you for your letter of 25 July addressed Oo | | which has been passed to me.
As Honorary Secretary of the College Council, | am the College Officer responsible for responding to
Coroners’ Regulation 28 Reports.

| was very sorry to hear of the death of Miss Cooper and the series of events leading up to it. | set out
below a brief description of the remit of the Royal College of General Practitioners and provide some
detailed comments on the specific concerns you raise in your report.

The role of the College

The Royal College of General Practitioners is a registered charity under Royal Charter and is the
largest membership organisation in the United Kingdom solely for GPs. Founded in 1952, it has over
50,000 members who are committed to improving patient care, developing their own skills and
promoting general practice as a discipline. We are an independent professional body with enormous
expertise in patient-centred generalist clinical care. Through our General Practice Foundation,
established by the RCGP in 2009, we also maintain close links with other professionals working in
General Practice, such as practice managers, practice nurses and physician assistants.

As well as running the postgraduate Membership examination (MRCGP) which is now required for
doctors to qualify as GPs, the College also provides continuing professional development (CPD) for its
members, and these continuing programmes are also available to non-members of the College.
However, not all GPs are members of the College, and older GPs may never have joined. The General
Medical Council holds the register of all who are considered able to practise as GPs, and it is to the
GMC that revalidated doctors will be notified.

Similarly, it is not for us to comment on the performance of any individual GP and the information set
out below is solely to show you what we provide in the context of training and advice to our Members.

RCGP Education and Training

Currently all doctors wishing to follow a career in general practice in the UK are required to undergo a 3
year programme of vocational training for general practice, based on the College’s GP Curriculum.

Royal College of General Practitioners 30 Euston Square London NW1 2FB
Tel 020 3188 7400 Fax 020 3188 7401 Email info@rcgp.org.uk Web www.rcgp.org.uk
Patron: His Royal Highness the Duke of Edinburgh Registered charity number 223106

(The curriculum forms the foundation for GP training and assessment across the UK, prior to taking the
College’s Membership Examination (MRCGP) and continues to be relevant to GPs throughout their
career, including preparation for revalidation) http:/Awww.rcgp.org.uk/gp-training-and-exams/gp-
curriculum-overview.aspx The GP Curriculum sets out College expectations of the standard of care
that a general practitioner should provide and | will use references to the GP Curriculum as a basis for
my response.

Comments on Coroner's concerns on the general practitioner care provided to Miss Clare Cooper

The underlying principle for a general practitioner’s management of any patient should be one of
“holistic care”. This is set out in the section of the GP Curriculum entitled “the Consultation in Practice”
where the following advice is set out:

“As a GP you should:

6.4 Understand that consultations have a clinical, a psychological and a social component, with the
relevance of each component varying from consultation to consultation (the ‘triaxial’ model)”

I give below detailed comments on the first six matters of concern you list in this particular case,, ie
those which directly relate to general practitioner care, setting aside your listed concerns 7 to 10 on
which advice from hospital medicine will be more appropriate.

1. Poor GP documentation The College believes that sound recording systems and well
organised record-systems are fundamental to good general practice and communications with
fellow healthcare professionals outside the practice. This expectation is set out in the section of
the GP Curriculum on “Being A GP”:.

http://www.rcgp.org.uk/gp-training-and-exams/~/media/Files/GP-training-and-exams/Curriculum-
2012/RCGP-Curriculum-1-Being-a-GP.ashx

..."As a GP you should...

1.2.3 Develop the clinical skills you need in history-taking, physical examination and the use of ancillary
tests for diagnosis”

and

“4.5.2 Develop your organisational skills for record-keeping, information management, teamwork,
running a practice and auditing the quality of care”

And again is highlighted in the section “The Consultation in General Practice” where the GP is enjoined
under criterion 1.6 to “Effectively use patient records (electronic or paper) during the consultation to
facilitate high-quality patient care” and in 1.10 to “keep accurate, legible and contemporaneous records”

The qualities required of the GP in information gathering and recording and its importance for good
patient care are further spelled out under the section “Patient Safety and the Quality of Care” of the
GP Curriculum:

... “As a GP, you should...

“Demonstrate an understanding of the connection between good data entry and improved patient health
outcomes

1.14 Demonstrate how to use information management and technology (IM&T) to share information and
co-ordinate patient care with other health professionals

1.15 Demonstrate an understanding of the need for information recorded in the practice clinical system
to be fit for sharing with different health professionals in different organisations

Royal College of General Practitioners 30 Euston Square London NW1 2FB
Tel 020 3188 7400 Fax 020 3188 7401 Email info@rcgp.org.uk Web www.rcgp.org.uk
Patron: His Royal Highness the Duke of Edinburgh Registered charity number 223106

1.16 Demonstrate how to use NHS electronic booking systems to tailor healthcare provision to the
needs of the individual patient

1.17 Demonstrate the use of the practice’s computer system to improve the quality and usefulness of
the medical record, e.g. through audit

1.18 Demonstrate effective use of interagency systems such as pathology links and GP-GP record
transfer”...

2. “Lack of evidence of a robust assessment of presenting signs and symptoms ...” The following
section of the GP Curriculum provides advice on the diagnosis of metabolic disorders

http://www.rcgp.org.uk/gp-training-and-exams/~/media/Files/GP-training-and-exams/Curriculum-
2012/RCGP-Curriculum-3-17-Metabolic-Problems.ashx

The Key Messages given on page 3 of this section are particularly relevant in this case:

e “As a general practitioner(GP)you should have an understanding of how common endocrine or
metabolic disorders such as diabetes mellitus, thyroid or reproductive disorders can present.
You must also be aware of rarer and important disorders such as Addison's disease, which can
be potentially life-threatening if missed

e Biochemical tests can be diagnostic and often necessary for monitoring metabolic and
endocrine diseases.so it is important for GPs to know which tests are useful in a primary care
setting and how to interpret these tests and understand their limitations”

3. “Lack of GP routine vital sign monitoring eg heart rate, blood pressure and weight measurement...”
4. Noestablished system for recognition, assessment and management of electrolyte abnormalities
within the GP Practice ......

5. Lack of understanding of the underlying causes of hyponatraemia ......

Guidance on the use of routine tests in general practice is provided on page 6 of the Section on
“Primary Care Management”

“As a GP you should.....

1.6 Understand the use and main limitations of tests commonly used in primary care to investigate and
monitor metabolic or endocrine disease, e.g. fasting blood glucose, HbA ‘1c, urinalysis for glucose and
protein, urine albumin: creatinine ratio, ‘near patient testing'(point of care testing)for capillary glucose,
lipid profile and thyroid function tests, and uric acid tests”

6. Insufficiently detailed referral letter to EDS......

Guidance on referral to secondary care is provided in the following sections.

Being a GP
http://www.rcgp.org.uk/gp-training-and-exams/~/media/Files/GP-training-and-exams/Curriculum-
2012/RCGP-Curriculum-1-Being-a-GP.ashx

This section advises the general practitioner at all times to:

“4.3 Co-ordinate care with other professionals in primary care and with other specialists”
And spells this out as follows: “This means that as a GP you should:

1.3.2 Understand the importance of excellent communication with patients and staff for effective
teamwork

1.4.2 Understand the processes of referral into secondary care and other care pathways
Royal College of General Practitioners 30 Euston Square London NW1 2FB

Tel 020 3188 7400 Fax 020 3188 7401 Email info@rcgp.org.uk Web www.rcgp.org.uk
Patron: His Royal Highness the Duke of Edinburgh Registered charity number 223106

1.4.3 Manage the interface between primary and secondary care, including unscheduled care, accurate
sharing of information on medicines and communication with other professionals

1.5 Make available to your patients the appropriate services within the healthcare system
This means that as a GP you should:

1.5.2 Develop your organisational skills for record-keeping, information management, teamwork,
running a practice and auditing the quality of care”

(You will see that in this section, the need for excellent communication based on full, accurate records
is again emphasised.)

Guidance on the writing of referral letters is provided in the section “The General Practice Consultation
in Practice”

http://www. gponline.com/rcgp-curriculum/the-general-practice-consultation

| hope you find these comments helpful.

Yours sincerely

Honorary Secretary

Royal College of General Practitioners 30 Euston Square London NW1 2FB
Tel 020 3188 7400 Fax 020 3188 7401 Email info@rcgp.org.uk Web www.rcgp.org.uk
Patron: His Royal Highness the Duke of Edinburgh Registered charity number 223106
Response from Royal College of Psychiatrist (PDF)
JFM/JB
19 September 2014

Dr Karen Henderson
HM Coroner for Surrey
HM Coroner's Court
Station Approach
Woking

Surrey

GU22 7AP

Dear Dr Henderson,
Re: Miss Clare Cooper (Regulation 28 Report - Action prevent Future Deaths).

Thank you for your letter dated 25.7.2014. | have been aware of this case since the family
approached me prior to the Coroners hearing, seeking to instruct me in an expert capacity
regarding their daughter's tragic death. At that stage, | indicated a conflict of interest, given my
leadership of the Royal College of Psychiatrists Eating Disorder Section, but | do therefore
have a longitudinal knowledge of the case.

| have already responded to the family’s own correspondence with myself, and | attach this for
your interest.

The issues raised in your report address the need for better EDS proformas in the triaging of
patients with eating disorders. On behalf of the Royal College of Psychiatrists, | agree with this
entirely.

However | would add two additional points. First, the Royal College of Psychiatrists is generally
concemed about risk assessment in psychiatry, over and above eating disorders, with undue
reliance on risk assessment proformas.

This is reflected in the Alderdice and the Kennedy reports on suicide and homicide prevention,
with services increasingly using risk assessment proformas as a type of ‘checklist’, necessary
but not sufficient in the evaluation of risk. Proformas provide a helpful aide memoire, but are
insufficient to allow the detection of relatively rare differential diagnoses. Thus, as well as
decent proformas, we require eating disorder specialists with adequate medical training.

As a Faculty, we assert the need for better standards of eating disorder specialism, and have
submitted a curriculum to the GMC for training standards to be met before a doctor is
recognised as a specialist in eating disorders.

Registered office: 21
Tel: +44 (0)20 7235

We also have concems over the heterogeneity of outpatient services across the UK. | have
established standards for inpatient services (available at:
http:/Awww.rcpsych.ac.uk/workinpsychiatry/qualityimprovement.aspx), but outpatient services
are based on local commissioning decisions. For example, we are aware of some outpatient
services with limited medical input.

The specific issue of robust EDS proformas is best tackled through the MARSIPAN Guidelines
of the Royal College of Physicians and the Royal College of Psychiatrists, which address
physical risk monitoring in eating disorders. | co-authored the original guideline, and have co-
authored a revised guideline, but the lead in this has been J whose expertise
in risk assessment in eating disorders is well recognised.

As you will see in my correspondence with the family, | will ask [MJ to consider how
best to disseminate robust EDS proformas across the UK health economy, probably best
tethered to the launch of the revised MARSIPAN Guidelines, which is forthcoming.

It would be within the remit of MARSIPAN to provide ‘a national protocol for assessing patients
seriously ill with an eating disorder with a possibility of detecting individuals with an organic
basis for the condition’. | also understand that a nae knowledge of this specific case.

{am likely to step down as Chair of the Royal College of Psychiatrists Eating Disorder Section
before the end of the year, though will attend the next Executive Committee Meeting in the
autumn. | will raise the issues within your letter at that meeting, but wished to correspond prior
to the next meeting, given the deadline for a response of 56 days. Thereafter, the administrator
of the committee NNN at The Royal College of Psychiatrists, 21 Prescot Street,
London E1 8BB.

Kind regards,

Consultant Psychiatrist
Response from Surrey Borders Partnership NHS (PDF)
Surrey and Borders Partnership

NHS Foundation Trust

Trust Headquarters,
18 Mole Business Park
Randalls Road, Leatherhead

18 September 2014 Surrey
KT22 7AD
Dr Karen Henderson Te:

Assistant Coroner in Surrey

Dear Dr Henderson

Inquest into the death of Clare Cooper - REGULATION 28 REPORT TO PREVENT
FUTURE DEATHS

Further to the conclusion of the inquest into Miss Cooper's death on 11" July 2014, you
wrote to Surrey and Borders Partnership NHS Foundation Trust in accordance with the
Regulation 28 report to prevent future deaths, stating that during the course of the inquest
the evidence revealed matters giving rise to concern. We would like to take this
opportunity to offer our sincere condolences to Miss Cooper's family for their loss.

The areas of concern you raised that relate to our Trust and our responses are detailed
below:

Lack of evidence of a robust assessment of presenting signs and symptoms with a
presumption of a psychological/psychiatric problem without considering or
excluding an organic cause

We have revised our referral form in order to try and improve the quality of information that
GPs provide when referring patients. The form asks for more detail from the GP including
that they consider and exclude organic causes of weight loss prior to making a referral to
the Eating Disorders Service. The form also highlights the need for the GP to provide
further details of the nature of the eating problem, results of blood investigations, physical
examination and past medical history so that all information is available prior to
assessment by the Eating Disorders Service. It is hoped that as well as assisting the
Service in prioritising the referral, identifying if a medical assessment is necessary and
optimising the assessment process, the details required in the revised form will also act as
a prompt for the GP to consider the possibility of organic disease in those presenting with
eating difficulties.

For a better life

Trust Headquarters, 18 Mole Business Park, Leatherhead, Surrey KT22 7AD
T_0300 55 5S 222 F_01372 217111 www~ssabp.nhs.uk

Lack of understanding of the underlying causes of hyponatremia (consistently or
intermittently low) and the level below which will require further investigation, and
the investigations that should be carried out, particularly in circumstances when
there is no obvious cause of the low sodium.

We acknowledge the importance of increasing knowledge and awareness within the
Eating Disorder Service about possible causes of hyponatremia and when to seek further
investigations. We will be addressing this need through the Trust-wide eating disorders
academic meeting during which there will be a teaching session for all clinical staff
specifically about presenting symptoms and signs of Addisons disease including
psychological manifestations, causes of hyponatremia and circumstances/levels below
which further investigation should actioned.

Insufficiently robust EDS proforma used to triage patients for an eating disorder:
lack of prompts and a need to emphasize and exclude possible organic causes,
however rare. The lack of a documented list of potential diagnoses to be assessed
and excluded at triage, including organic causes. A need to facilitate
communication from the referral agents to the eating disorder service.

The triage assessment form was introduced a number of years ago as a screening
assessment to establish if the patient met the criteria for having an eating disorder that our
service could help with, rather than being developed as a comprehensive assessment
form. This enables us to see people quickly and avoid waiting lists. If the person is found
to be suitable for our service, they are then offered a fuller assessment.

We have however reviewed our triage form to ensure that all information including physical
investigations is recorded in one form. The changes made include:

1. Box to record bload investigation results
2. Box to record findings of physical examination
3. 3.Box to record details of physical symptoms and past medical history with prompts.

The form also has an addendum reminding staff to be alert to the possibility of organic
causes of illness when assessing new referrals. It provides a list of examples of possible
conditions that may present with weight loss/eating problems. We are of the view that this
revised form will prompt our staff to make contact with the GP where required to request
organic causes to be ruled out. It is our expectation that in cases where any symptoms
are atypical, that they would be discussed with the medical staff in the team and
appropriate action would be taken.

Lack of hospital notes available for the pathologist undertaking the post mortem to
facilitate a greater opportunity for clinical pathological correlation in deaths which
are_unascertained and _a_ higher level_of suspicion to explore rare causes of
unexpected death, especially in the young.

We are sorry that there was an issue with making notes available to the pathologist to
facilitate a review to determine any clinical -pathological correlation. We work really

closely with all interested parties to share clinical records including the Coroner and the
pathologists. In this incident we shared records with the family (including the professional
witness) and our Medical Records Team was in constant communication with them about
access to records, but we are unable to find any information about any delays or issues
with making these records available to the pathologist. We have shared this concern with
our Medical Records Team and we will continue to support them in ensuring that all key
records are made available in a timely manner to the pathologist in the future.

Our Board has been made aware of your letter and we would like to offer our sincere
condolences again to the Cooper family for their loss. We hope that the steps we have
taken as outlined above assure you and Miss Cooper's family that we have leamt and
continue to learn from Miss Cooper's death. Please do not hesitate to contact me or

HE Director of Quality (DoN) if you require any further information.

Yours sincerely

Fiona Edwards
Chief Executive

cc

GE — Director of Quality (DoN)

Es — Viedical Director
HE «Director of Children & Young People Services

HE Director Risk & Safety (DDoN)
Response from Woodlands Surgery (PDF)
WOODLANDS SURGERY

5 WOODLANDS ROAD
REDHILL
RH1 6EY
Tel.
Fax:

Dr Karen Henderson
Assistant Coroner
HM Coroner’s Court
Station Approach
Woking

Surrey

GU22 7AP

23 September 2014
Dear Dr Henderson,

Miss Clare Serena Anke COOPER
Regulation 28 Report — Action to Prevent Future Deaths

Following the retirement of | am now the senior partner at
Woodlands Surgery. |! was very upset to hear of the death of Miss Cooper
and | would like to offer my condolences to her family.

The report from Miss Cooper's inquest on the 11" July 2014 detailed in your
letter of the 25" July has been circulated to all of the doctors here at
Woodlands Surgery. We have discussed your findings and concerns at great
length and have reflected on them both individually and together as a
practice.

We noted from your report that the diagnosis of an organic condition was not
considered fully enough and that a psychological problem was considered all
too readily without proper review of the history that Miss Cooper gave and the
results of her blood tests.

Normally at Woodlands Surgery we run personal lists and patients usually see
their usual registered doctor. It would appear in this unfortunate case that
Miss Cooper saw several doctors and we considered if this lack of continuity
of care may have been an issue in why her abnormal blood tests were not
followed up and investigated in a more robust way. We agree that
consideration of an organic cause of her symptoms should have been given
more consideration prior to and following the referral to the eating disorders
clinic.

All of the doctors at Woodlands Surgery have reflected on the matters of
concern that you raise in your report, please find outlined below the
comments from the practice and steps that we have taken in respect to each
point of your report which relates to the care covered by the practice.

1. Poor GP documentation

We have all agreed that all consultations should be fully documented in the
patients’ notes. All patients should have a proper assessment of their history
and a full examination should be done and routine vital signs should be
recorded if they are clinically relevant.

We have all agreed that the notes keeping in this case should have been
better and may have compounded the issue relating to lack of continuity of
care. In order to improve patient care and ensure that an episode like this is
not repeated, doctors at the practice have agreed that as part of their ongoing
personal development plan to submit anonymised consultation notes for their
next appraisals. This will give a chance for each individual doctor's appraiser
to assess the quality of note keeping.

2. Lack of evidence of a robust assessment of presenting signs and
symptoms with a presumption of a psychological/psychiatric problem
without considering or excluding an organic cause

Upon reflection all of the doctors have agreed here at the practice that a
functional cause was accepted far too readily by the doctors involved in Miss
Cooper’s care and that an organic cause should have been considered and
reconsidered upon subsequent consultations. Miss Cooper's hyponatraemia
was dismissed too readily and should have been investigated further.

3. Lack of GP routine vital sign monitoring e.g. heart rate, blood
pressure and weight measurement when weight loss is a concern with a
lost opportunity to assess the severity of weight loss

We have all agreed that all patients should have a proper assessment of their
history and a full examination should be done. Routine vital signs should be
recorded if they are clinically relevant. If a patient presents with weight loss
then the weight loss needs to be objectively documented with serial weight
measurements.

4. No established system for recognition, assessment and management
of electrolyte abnormalities within the GP practice and/or consideration
of the chemical pathology service to “flag up” particularly concerning
results

The system at the practice at the time for identifying abnormal electrolyte
results was that all results are seen by the patients’ usual registered doctor. It
is the responsibility of the patients’ usual registered doctor to action and file
the results. In relation to this case the results were seen and filed by Miss
Cooper's registered doctor. Miss Cooper was reviewed here at the practice
within a week of each abnormal electrolyte result. The practice has
considered what if any specific changes can be made to the way in which we

handle abnormal pathology results as a result of this case. Unfortunately we
do not consider that there are any specific system changes that can be
implemented but | have highlighted to all clinicians the importance of
monitoring and assessing electrolyte abnormalities and appropriate follow up.

5. Lack of understanding of the underlying causes of hyponatraemia
(consistently or intermittently low) and the level below which will require
further investigation, and the investigations that should be carried out,
particularly in circumstances when there is no obvious cause of the low
sodium

We have all discussed at length the causes of hyponatraemia and the
investigations required to make a diagnosis of Addison's disease. | am now
sure now that all of the doctors here at the practice have a fuller
understanding of this rare condition. In addition all of the GPs will now be
completing the BMJ online learning e-module on hyponatraemia. We will add
this learning need to our PDP’s and will be submitting this for our appraisals.
We have also invited IJ Consultant Endocrinologist at East Surrey
Hospital to give a lunchtime educational meeting here at the practice on
hyponatraemia and Addison’s Disease. This is provisionally booked for
Monday 13" October 2014.

6. Insufficiently detailed referral letter to EDS (mentioning “low sodium”
but not accompanied with a copy of the blood results) and an
opportunity was lost for its significance to be considered

99% of referrals from Woodlands Surgery go to Surrey and Sussex
Healthcare Trust (SASH). The Trust is linked in to the pathology software so
for the vast majority of our referrals the hospital does have access to our
patients’ pathology results. However from now on all patient referrals will
have copies of all investigations (not just blood tests) attached with them to
the referral letter.

9, Lack of hospital or GP notes available for the pathologist undertaking
the post mortem to facilitate a greater opportunity for clinic-pathological
correlation in deaths which are unascertained and a higher level of
suspicion to explore rare causes of unexpected death, especially in the
young

GP notes are always available for post mortem examinations. They do need
however to be requested from us by the pathologist. Unfortunately the
practice did not receive a request on this occasion.

| hope that this response has reassured you that the practice has taken this
case and your report very seriously. If you need any further information please
do not hesitate to contact me.

Yours sincerely,

Dr Richard Adams

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