Provision of Vein of Galen Malformation (VGAM) Service, as the Emergency back-up treatment provider

Vein of Galen malformation (VGAM) is an arteriovenous malformation which typically results in high output cardiac failure. VGAMs usually occur in fetuses or new-born babies, although sometimes these problems do not present until later in life. VGAMs are extremely rare abnormalities in the blood vessels in the brain leading to excess blood flow which can result in cardiac problems.<br/><br/>The VGAM service in England aims to diagnose neonates, babies and children and to treat and manage patients with a confirmed VGAM diagnosis provided they are in scope to benefit from treatment. This includes acute admission, sub-acute presentation and elective referrals. This service also covers the population of Scotland. <br/><br/>The nationally commissioned service is currently based at Great Ormond Street Hospital (GOSH) in London. This service is to provide national emergency cover for VGAM in the event that the Great Ormond Street Hospital service is unavailable.<br/><br/>Specifically, the VGAM service aims to: <br/>• Provide accurate diagnosis; <br/>• Assess patients with regard to indications for, and the timing of, treatment;<br/>• Deliver high quality holistic care from a multi-disciplinary team (MDT) that may include but is not limited to: interventional neuroradiology, foetal medicine, neonatal medicine, paediatric neurology, neurosurgery and cardiology, intensive care and nursing care;<br/>• Deliver high quality emergency interventional neuroradiology treatment of patients with VGAM:<br/>o for those identified in the antenatal period, to confirm diagnosis then manage the assessment of the baby following elective delivery;<br/>o for those identified post-natally or later, during the infant’s first hospital admission for embolisation and any subsequent admission (typically one or two) for further embolisation) – as required during the period of emergency cover;<br/>• Optimise medical management to reduce the risk of complications;<br/>• Maintain clinical and service audits (risk and governance) to ensure highest standards of safety, care and clinical effectiveness;<br/>• Work in partnership with local medical teams, primary care and the parents/carers to provide advice and optimise management of symptoms;<br/>• Provide longer term follow up until the child reaches adulthood (GOSH only);<br/>• Screen for and manage conditions associated with VGAM disease.<br/><br/>The Service is required to meet the following needs:<br/>a) Provision of emergency cover for an exemplary and comprehensive service for all patients referred with VGAM;<br/>b) Expert diagnosis of VGAM utilising the most up-to-date validated diagnostic tools and knowledge;<br/>c) Expert emergency management of patients with confirmed VGAM through the use of the most up-to-date clinical protocols;<br/>d) Effective monitoring of patients to ensure optimal functioning for the patient with regards to their VGAM;<br/>e) Contribute to a rolling programme of clinical audit to test current practice and inform the evolution of care in VGAM;<br/>f) Provision of care with a patient and family-centred focus to maximise the patient experience of care.