Royal Cornwall Hospital Truro Cornwall

Launceston, United Kingdom

Royal Cornwall Hospital Truro Cornwall

Launceston, United Kingdom
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Shankar R.,Cornwall Partnership NHS Foundation Trust | Jory C.,Cornwall Partnership NHS Foundation Trust | McLean B.,Royal Cornwall Hospital Truro Cornwall | Tittensor P.,Royal Wolverhampton NHS trust | Walker M.,University College London
Epilepsy and Behavior | Year: 2017

Status epilepticus (SE) has a high mortality rate and is associated with complications such as neurological deficit and cognitive decline. Buccal midazolam is the recommended emergency rescue medication in the UK to reduce the duration of a seizure and SE. It should be administered by an appropriately trained person. There are agreed guidelines on training standards for its administration in the UK produced by the Joint Epilepsy Council of the United Kingdom and Ireland. Training should provide an overview of epilepsy to facilitate safe, person-centered care and appropriate administration of rescue medication to people with epilepsy (PWE). Unfortunately the current guidelines do not assure satisfactory practice. An investigation was conducted to quantify the nature and degree of the problem in Cornwall, UK (population 550,000). To address the identified inconsistencies, a web-based test was developed using a focus group of experts and stakeholders. Over 800 carers for PWE took the test at different intervals of its development. A consistent 20% failure rate was noted. Over 90% of participants felt it kept PWE safer. The test was incorporated into routine clinical practice and has contributed to reduction of primary epilepsy deaths. The e-test is a cost-effective solution to help harmonize practices across different settings and can be easily adopted by other countries. © 2017 Elsevier Inc.


Young C.,Cornwall Partnership NHS Foundation Trust | Shankar R.,Cornwall Partnership NHS Foundation Trust | Palmer J.,Royal Cornwall Hospital Truro Cornwall | Craig J.,Belfast Health Trust | And 4 more authors.
Seizure | Year: 2015

Purpose An estimated 1.4 million people in the United Kingdom (UK) have intellectual disability (ID) with 210,000 having severe or profound ID. Of these, approximately 125,000 have epilepsy, representing one quarter of all patients with epilepsy in the UK. For those with full scale intellectual quotients (FSIQs) of less than 50, half have epilepsy, with half of these having treatment resistant epilepsy. One of the two major causes of mortality within this population is sudden unexpected death in epilepsy (SUDEP). Methods We performed a literature review exploring the extent to which ID was considered as a risk factor for SUDEP. We also considered whether there was any relationship between the types of health care system in which the studies were conducted and whether ID was considered in studies of SUDEP. Results We identified 49 studies which had explored risk factors for SUDEP, of which, approximately 50% (n = 23) considered ID in the planning stages. Of these studies 60% (n = 14) found ID was a risk factor for SUDEP. 60% of all the studies were conducted in countries where the health care system was publicly funded. Conclusions Overall we found ID definitions and specified standardized mortality rates and impact of institutionalization to be quite poorly presented. © 2014 British Epilepsy Association.


PubMed | Cornwall Partnership NHS Foundation Trust, Belfast Health Trust and Royal Cornwall Hospital Truro Cornwall
Type: | Journal: Seizure | Year: 2015

An estimated 1.4 million people in the United Kingdom (UK) have intellectual disability (ID) with 210,000 having severe or profound ID. Of these, approximately 125,000 have epilepsy, representing one quarter of all patients with epilepsy in the UK. For those with full scale intellectual quotients (FSIQs) of less than 50, half have epilepsy, with half of these having treatment resistant epilepsy. One of the two major causes of mortality within this population is sudden unexpected death in epilepsy (SUDEP).We performed a literature review exploring the extent to which ID was considered as a risk factor for SUDEP. We also considered whether there was any relationship between the types of health care system in which the studies were conducted and whether ID was considered in studies of SUDEP.We identified 49 studies which had explored risk factors for SUDEP, of which, approximately 50% (n=23) considered ID in the planning stages. Of these studies 60% (n=14) found ID was a risk factor for SUDEP. 60% of all the studies were conducted in countries where the health care system was publicly funded.Overall we found ID definitions and specified standardized mortality rates and impact of institutionalization to be quite poorly presented.

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