The Fatal Accident Inquiry process in Scotland is a judicial process held where it is considered that there is a public interest in investigating the cause of death. The recommendations of an Inquiry are not legally binding, but are legally persuasive and highly influential on professional and policy communities.
The Casey and Ilia Inquiry clarifies that the test for the public inquiry is not whether any reasonable precautions `would have prevented’ the death but whether there is a `real or lively possibility` that the death might have been avoided by the reasonable precaution.
Erin
Erin Casey, aged 19, died on 27th October 2006 and Christina Ilia, aged 15, died on 23rd March 2009.
Christina
Sheriff Duff found that 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.
The Fatal Accident Inquiry heard evidence from 29 witnesses between November 2010 and March 2011.
Summary report
Full report
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Evidential Findings
Erin and Christina deaths were Sudden Unexpected Death in Epilepsy (SUDEP).
Apart from one doctor, all the witnesses agreed that the single most important factor in reducing the risk of SUDEP was to reduce the risk of seizures and the optimum route to achieving that goal was to comply with the regime of prescribed medication.
Summarising the evidence as part of the 50 page determination, the Sheriff found:
(1) SUDEP is normally associated with a seizure;
(2) The risk of SUDEP occurring is reduced if, inter alia, the frequency of seizures is reduced;
(3) The frequency and incidence of seizures can be reduced by a number of factors, some related to lifestyle, but the most important related to proper compliance with a regime of anti-epileptic medication;
(4) If a seizure occurs intervention by another person might prevent SUDEP taking place
In respect of Erin the sheriff found that she did not comply properly with her regime of medication and, as it happens, continued to have seizures;
Had Erin been told of the risk of SUDEP she might have complied more assiduously with her regime of medication which might have prevented the seizure suffered by her on the night of 27th October 2006; Had Erin been told of the risk of SUDEP she and her family would have discussed and considered the possibility of changing her university accommodation arrangements with a view to providing night supervision for her;
Had Erin been subject to supervision on the night of 27th October her supervisor might have been able to intervene and death might not have resulted.
In respect of the death of Christina the sheriff found that had Christina and her parents been told of the risk of SUDEP they would have discussed and considered the possibility of providing night supervision for her, possibly by use of an alarm; Had Christina been subject to supervision on the night of 23rd March her supervisor might have been able to intervene and death might not have resulted.
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Inquiry Recommendations
The Inquiry recommendations, which will come to the attention of the Cabinet Secretary for Health and Wellbeing, the Chief Medical Officer for Scotland, NHS Scotland including the various local NHS Boards, the General Medical Council, the Nursing and Midwifery Council, the General Pharmaceutical Council, the various medical Royal Colleges and those responsible for the issuance of guidelines to the health professions such as the SIGN and NICE guidelines, include:
- The risk of SUDEP should be advised to patients (and carers as appropriate) unless in the case of a particular patient there is a risk of serious harm.
- 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.
- 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.
- 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.
The Sheriff also made recommendations regarding medical record keeping; medical training and the review of national epilepsy guidelines. A particular recommendation was made that following evidence taken in respect of the death of Christina, the Police should review their practice of describing sudden unexpected deaths as a “crime scene”.
Erin’s parents Janet and Graham Casey said after the Inquiry:
“We welcome the outcome of the Fatal Accident Inquiry into the death of Erin with relief. The possibility of Erin being alive today has been established…We would like to direct the inquiry to the health boards and doctors alike who have previously considered it appropriate to withhold potentially life saving information and to those who continue to do so. The NHS promotes mutual partnership and care, withholding information does not fit in with that ethos”.
Christina’s parents, Lynne Wheeler and Markos Ilia stated;
“For us the recommendations clarify what we have believed all the way through the process, that we should have been informed about SUDEP and that we were entitled to that information…No-one wants to be in the situation we are in, being left with never knowing if we had been told about SUDEP and the existence of alarms that can be used by patients whilst sleeping might have alerted us to the event or been able to get emergency treatment for Christina which ultimately would mean she would still be with us- this is not any way for us to live or for anyone to live with. As a parent you want to know that you have done everything possible to protect your child”
