Fatal Accident Inquiry into the deaths of Erin Casey and Christina Fiorre Ilia

A summary of the Determination issued by Sheriff Alistair Duff is now available.

Erin Casey, aged 19, died on 27th October 2006 within her bedroom, Room 5, 22 Fife Park, St Andrews, Fife.
Christina Ilia, aged 15, died on 23rd March 2009 at 19 Newmonthill, Forfar, Angus.

Erin and Christina were the much loved daughters of caring and supportive parents. Erin had two loyal siblings, a brother and sister, and was in a fond relationship with her boyfriend.
Erin was an intelligent, hard working young woman who was in the first year of a degree course in languages at St Andrews University.

Christina had been born with various medical difficulties but through her own fortitude and the support of her parents she had grown up to be a popular, bright schoolgirl undertaking a wide range of school and community activities.
Erin and Christina had much to live for and are sadly missed.

Between November 2010 and March 2011 a Fatal Accident Inquiry was held into the circumstances of both deaths. The purpose of the inquiry was firstly to ascertain the circumstances surrounding the deaths of Erin and Christina, including the cause of death, and also to establish whether there were any reasonable precautions which, if taken, might have avoided Erin and Christina dying in the circumstances in which they did.

    (“Certainty that the accident or death would have been avoided by the reasonable precaution is not what is required. What is envisaged is not a “probability” but a real or lively possibility that the death might have been avoided by the reasonable precaution”  Carmichael, Sudden Deaths and Fatal Accident Inquiries 3rd Edition page 174 para 5-75.)

Summary of Findings

 In respect of both Erin and Christina the cause of death was sudden unexpected death in epilepsy (SUDEP).

In relation to Erin

(1) The reasonable precautions whereby the death might have been avoided were
if Erin and her parents had been advised of the risk of SUDEP;
if Erin had adhered to the regime of anti-epilepsy medication prescribed to her; and
if Erin had been subject to supervision while asleep during the night of 27th October;
(2) A defect in any system of working which contributed to the death was:-
Erin’s response to her initial diagnosis, understanding of that
diagnosis and compliance with medication was not effectively monitored and appropriate further advice was not provided in the period immediately after 12th April 2006 and before her next appointment on 5th September 2006 and between then and her death;
(3) Other facts which were relevant to the circumstances of the death were:-
No system was in place within Erin’s GP practice to monitor her
     uptake of the repeat prescription of her anti-epilepsy medication

In relation to Christina

      (1) The reasonable precautions whereby the death might have been
      avoided were:-
                (a) if Christina  and her parents had been advised of the risk of SUDEP;
                (b) if Christina had been subject to supervision while asleep during
                      the night of 23rd March;
(2) Other facts which were relevant to the circumstances of the death were:-
Officers of Tayside Police who attended at Christina’s home on the morning of her death referred to the house as “a crime scene” in speaking to her parents. This was insensitive and, if it accords with procedure, should be reconsidered in future.

I recommend the following:-

The vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP on first diagnosis or if , in the particular circumstances of that patient, there are exceptional circumstances for delaying immediate provision of the information, then within a very short time thereafter. Advice about the risk of SUDEP should only be withheld if there is assessed to be, in the case of a particular patient, a risk of serious harm to the patient in providing the information or the patient has learning difficulties.
A decision not to inform a patient or his or her family about
SUDEP should be recorded in the patient’s medical records alongwith an explanation, however brief, for the decision.
After a consultation with an epilepsy patient the consultant or, where appropriate, the specialist epilepsy nurse, should send a letter to the patient and to the patient’s GP summarising the findings of the consultation and any care or treatment decisions taken.
The information and advice about SUDEP should be provided directly by the consultant in charge of the patient’s case or, where appropriate, by an epilepsy specialist nurse.
All NHS Boards should prioritise consideration of their arrangements for the care of epilepsy patients, whether a post of epilepsy specialist nurse is required, if not already in place, in any particular hospital and, if there is such a post, whether the current arrangements are adequate.
Current arrangements for the provision of written information packs to newly diagnosed epilepsy patients and their families should be reviewed to ensure that they are adequate and meet the needs of patients for information and access to services and support at a distressing time.
Where a patient is prescribed medication both the prescribing doctor and the dispensing pharmacist should provide the patient with clear and easily understood instructions as to how the medication is to be taken. If the regime of medication is relatively complex the doctor should take time to explain it and should, in particularly complex cases, provide written instructions. In the case of all prescriptions pharmacy labels should be clearly printed in easily read, jargon-free text.
Consideration should be given to the feasibility of introducing a 
     system in GP practices (possibly in conjunction with pharmacies)
     whereby the uptake of repeat prescriptions by patients can be
     monitored.

Those responsible for the issuance of guidelines on the care and management of epilepsy patients should consider the adequacy of existing guidelines in the light of this inquiry and the evidence led. They should consider the recommendations made, any resultant revision of the guidelines which might be appropriate and the need for clarifying for medical professionals the status of the guidelines in clinical practice.
It may be that some of my recommendations, if adopted, would have ramifications for training of medical professionals. Regardless of such consequential issues of training it appeared to me that this inquiry revealed other areas of clinical practice in respect of which I recommend that consideration be given to the training needs of medical professionals:-
the assessment of published research literature;
the status of published guidelines on care and treatment;
the provision of potentially distressing information to patients;
methods for obtaining information from patients, particularly teenagers or those who may be reluctant to be honest with their doctor or nurse;
the provision of information and advice about modifying behaviour to achieve lifestyle changes which may contribute to the relief of a condition or minimise a risk associated with that condition;
recognising the particular circumstances of a patient and tailoring advice and information as appropriate with particular emphasis on teenagers or young adults moving towards independence, engaging in risky activities or beginning to take responsibility for themselves.
 (10) I recommend that Tayside Police and, if appropriate, other forces, 
       review their practice in relation to their approach to the location of a 
       sudden unexpected death and in particular the practice of, ab initio,
       describing it as a  “crime scene”.