Erin Casey and Christina Fiorre Ilia

I recommend the following:- (1) 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. I accept the evidence of many of the witnesses that patients have an entitlement to be informed about a significant aspect of their condition regardless of the particular applicable risk, though I would expect the information to be provided against the background of, inter alia, a description of that risk. Additionally, in my assessment of the evidence which I accepted, there are good practical reasons for informing the patient about the risk of SUDEP. It may underline the need to comply with the regime of medication and it may reinforce the merit in adopting modes of lifestyle which could reduce the risk of seizure and therefore of succumbing to SUDEP. Finally it would give the clinician, the patient and his or her family the opportunity to consider issues of night supervision, the use of seizure alarms and the practice of resuscitation techniques all of which, on the evidence which I accepted, might reduce the risk of SUDEP. (2) 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. (3) 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. (4) 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. The majority of the expert witnesses stated that this was the course followed by them and their nurses. None had any experience of significant adverse reactions. None found any difficulty in imparting the information. It was suggested that the more clinicians engaged in telling patients about SUDEP the easier it became. It was not left to patients to ask about SUDEP or risk generally and patients were not simply given information leaflets and expected to carry out their own research. The witnesses were, it should be said, fairly confident that patients, particularly those with internet access, would engage in their own research. It was at least partly for this reason that the witnesses thought it important personally to give information and advice about SUDEP, so that patients would be properly informed and not made excessively anxious by something read online. (5) 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. I did not hear definitive evidence about the nationwide use of epilepsy specialist nurses. Ninewells Hospital in Dundee has had such a post for some time. Since a point after Erin’s death Victoria Hospital in Kirkcaldy has had an epilepsy nurse thought Dr Zeidler’s evidence suggested that there was some doubt about covering the post. All of the other expert witnesses had the benefit of such a service and its merit was clear. It appeared that the nurse usually had almost as much expertise in the practical care and treatment of patients as the consultant. The nurse worked in a fashion complementary to the consultant’s role. The consultant often had much pressure on his or her time. The nurse could devote more time to the patient’s information and other needs and was generally more accessible by telephone or otherwise to give advice and answer questions about care, treatment and medication. (6) 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. Dr Zeidler was vague about the information packs currently given to patients at his hospital. (7) 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. This recommendation may seem obvious and unnecessary. However there was clear evidence from Erin’s family, which I accepted, that Erin did not properly understand the way she was supposed to take her medication in the period after first diagnosis. When Dr Zeidler had explained the medication to her she had made notes on a scrap of paper. To begin with at least she had required to halve tablets. The pharmacy label provided with her medication was printed in a small, dense typeface. If, for various other reasons (the casual attitude of a teenager, denial of her condition, side effects), she was reluctant to take her medication, this confusion and lack of confidence would not have helped. There were thus strong practical reasons for Erin to have her medication explained properly. (8)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. (9)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. There was unanimity amongst the medical witnesses that the SIGN and NICE guidelines are “tools not rules”. They exist to assist clinicians in identifying what is perceived as best practice but decisions about the care and treatment of individual patients are entirely for the judgement of the relevant consultant. Dr Zeidler, at least in relation to the issue of informing patients about SUDEP, declared himself entitled to analyse what he saw as the evidence base for the apparently clear guideline that information about SUDEP was “essential” and concluded that the guideline was not evidence based and therefore could be ignored. Having regard to his view of the status of the guideline he also did not feel that his decision not to follow it required to be noted in the patient’s medical records, as on the face of it required by another guideline. His decisions in this area were not informed by any particular assessment of Erin’s circumstances but represented his general view, just as his decision not to inform Erin about SUDEP represented his policy rather than being informed by a judgement that she as an individual would be excessively distressed or put at risk of serious harm by the information. The other medical witnesses who had much more experience than Dr Zeidler and who appeared less trammeled by dogma than him, accepted the guidelines for what they seemed to be - an informed and uncontroversial guide to best practice, to be followed unless a patient’s circumstances suggested otherwise in which case clear notes should be maintained of the reasons for that decision. Their view was that clinicians could not simply select those parts of the guidelines of which they approved and ignore the other parts. (10)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:- (a) the assessment of published research literature; (b) the status of published guidelines on care and treatment; (c) the provision of potentially distressing information to patients; (d) methods for obtaining information from patients, particularly teenagers or those who may be reluctant to be honest with their doctor or nurse; (e) 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; (f) 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. My recommendations in this area are largely driven by the view I formed of the evidence of Dr Zeidler. I have referred to his evidence above. He was reluctant to regard any published research as so definitive or convincing that it would impact on his clinical judgement, unless it supported his views that patients should not be told about SUDEP because of possible distress and that SUDEP was unpreventable. He felt himself able to pick and choose those parts of the SIGN and NICE guidelines of .which he approved. He seemed to be of the view that he could not probe patients to test the reliability of their claims to be taking their medication or experiencing no seizures, despite recognising that some patients were tempted to be less than honest. He was not prepared to give firm advice to patients about moderating their behaviour in any way which might reduce the risk of seizures or SUDEP for fear of appearing “paternalistic” or “schoolmasterly”. He was not prepared to acknowledge that some patients, on the cusp of adulthood, might suitably be given robust advice about the particular issues this might throw up in managing their condition. The other medical witnesses had no such problems in their attitude to the literature or the guidelines. They also had no difficulty in acknowledging the importance of getting accurate information from patients and providing suitably tailored advice to patients. As already mentioned one witness had the benefit of a clinic, a “transition” service, specifically aimed at young adults with epilepsy moving towards independence. On behalf of Erin’s family I was urged to recommend specifically that Dr Zeidler should undergo some training in these areas. I do not feel it appropriate or necessary to personalise my recommendations. (11) 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”.