National Institute for Health and Care Excellence

“We would look to the National Institute for Healthcare Excellence to take a lead on this work to help develop a further evidence base or consensus guidance in this complex area of clinical practice.”

“RCPCH are currently reviewing our Emergency Care Standards and the information within your report has been shared with our Emergency Care Committee to inform this work.”

“Following receipt of your report, senior clinical advisors within the patient safety team at NICE have reviewed the concerns raised. They have advised that incidence of VTE in children is low -1.4-2.1 cases per 100,000 children per year. This is much lower than the incidence in adults. In children, the most common risk factors for VTE are the presence of a central venous catheter (CVC) or conditions such as congenital cardiac disease. Other risk factors include inherited hypercoagulable state (as”

“The Department will work with NHS England to consider the VTE risk assessment tool, in light of the concerns you have raised.”

“we recommend that clinicians should use 'a tool published by a national UK body, professional network or peer-reviewed journal' to assess VTE risk, however we do not recommend a particular risk assessment tool as there is not enough evidence to support the use of one over another”

“We have reflected on the circumstances surrounding [the deceased]'s death and the concerns raised in your report. We note your concerns about a lack of clear guidance on whether intravenous aciclovir should have been prescribed in this case.”

“We have considered the circumstances surrounding Mr [name redacted] death and I have addressed below the matter of concern directed to NICE.”

“we propose to review the guideline to see if it can be updated to cover the issue of continuing VTE prophylaxis on discharge so that inpatient anticoagulation prescriptions for VTE prophylaxis are converted to ongoing anticoagulation where required”

“We will request these be addressed as soon as possible”

“We recommend the development of similar guidelines for GAS.”

“We note your suggestion that the issues raised in your report should be considered in the development of our new guideline on adrenal insufficiency, particularly that replacement steroid therapy must be given to patients with adrenal insufficiency who have suffered trauma or physiological stress.”

“recommend that all health and care providers ensure their organization has put processes in place to ensure the four actions on the National Patient Safety Alert have been addressed.”

“We are aware that increased body temperature can be a trigger for seizures in Dravet's syndrome and that these seizures may be of a complex nature (lasting longer than 15 minutes or occurring again within 24hr”

“We have taken an action to make all the medical directors and lead paramedics of UK ambulance services aware of the circumstances of [the deceased]' death and have asked them to review the JRCALC guidance and any local pathways or guidance in relation to decisions around conveying children after seizures.”

“We believe that our guideline on epilepsies: diagnosis and management [CG137], which was in place at the time of [the deceased]' death, is directly relevant to this case. The guideline covered diagnosing, treating and managing epilepsy and seizures in children, young people and adults in primary and secondary care and made recommendations on what should happen following a first seizure (section 1.4), diagnosis (section 1.5) and investigations (sections 1.6). CG137 has since been replaced by our guideline”