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BPNA Epilepsy Interest Group British Paediatric Epilepsy Group (BPEG) Meeting 22ND October 2010 9.30am-4pm Sky2 6th floor The Evelina Children’s Hospital London Agenda Chair: Tim Martland Secretary: Sarah Aylett Apologies: Ruth Williams, Chris Rittey,Phil Jardine, Ronit Pressler, Ailsa McLellan, Colin Ferrie, Kamath Tallur, Tony McShane, Karine Lascelles, Alasdair Parker, Martin Kirkpatrick, Santosh Mordekar, Nitishkumar Vora, Robert Robinson, Jayesh Patel, Richard Appleton,Rachel Kneen, Deirdre Peake, Dr Amy McTague, Andrea Whitney, William Whitehouse, Brian Neville, Penny Fallon, Sophia Varadkar, Antonia Clarke, Sunny Philip. Attendees: Deb Pal, Elaine Hughes, Colin Dunkley, Ruby Schwartz, Leena Mewasingh, Stefano Seri,Helen Cross, , Archana Desurkar, Helen Basu, Andrew Lux, Sushma Goyal, Krishna Das, Zenobia Zaiwalla. 1.Minutes of meeting 17.6.10 agreed as accurate 1.PET courses- presentation update from Colin Dunkley. Developing: PET Foundation Group, exploring feasibility of EEG PET and International PET. All bookings now made on PET website and information of course availability there. Survey of PET courses carried out using Survey Monkey. 382 responses., generally very positively rated. Need to address how to maintain quality of courses and how to promote courses (particularly PET1). Have now produced publications for PET 1. May be helpful to apply APLS model of ensuring through the Deaneries and Trusts that all involved in managing children with epilepsy require PET training (as applies to APLS for paediatric training). 1 PET 3 28-29.3 11 at Edinburgh. Includes SCNAI, Glut 1, malformations of cortical epilepsy, Angela Vincent, Olivier Dulac and two debates. Programme following from the BPNA. 2. Epilepsy 12 Audit Tool Update from Colin Dunkley (see presentation) Full methodology document is on RCPCH website. NCYPE and Epilepsy Action helped with getting information from parents/patients regarding their view of important markers of quality of services. Interest from 82% hospitals and 67% CEOs. Will be 202 audit units. Early adopters Dundee, Cambridge, Cardiff- go ‘live’ in January 2011, other units go live in May 2011. 45 stakeholders. Mapping work completed with audit leads for each audit unit. Mapped according to existing paediatric epilepsy networks. Webportal being finalised to go live in January 2011. Outcome data will eventually be in public domain. Aim to produce data from 2012 onwards. Also planning ahead after Epilepsy 12- considering a National Epilepsy Register to capture prospective data –propose working group for this in defining core data set required. Depends on aim of Register and whether for audit or research. Could be basis for researchers to identify subgroups or syndromes for specific research projects. Data set could be very useful for outcomes in relation to a standard. However, can also acquire data by good quality population sampling. Issue to consider in relation to prospective audit is that practice may change over time. Agree working group to explore feasibility of National Epilepsy Register- an email will be sent to BPEG for volunteers. 3.Paediatric epilepsy surgery in the UK Update from Helen Cross: Helen has given information to the Safe and Sustainable Services Review. This group is reviewing models of care for paediatric neurosurgical cases. Colin Ferrie, Colin Kennedy and Helen Cross are engaging with the group with the aim to produce a document for review of the BPNA members. Data from the recent epilepsy surgery audit is being fed into this. The structure of Neuroscience units in relation to paediatric surgery and paediatric neurology is being reviewed. The need for rehabilitation of children undergoing neurosurgery has been fully recognised and integration with neurodisability services is being considered for these patients. Colin Ferrie is attending The Models of Care Stakeholder meeting on 22nd November. 4. BPEG epilepsy surgery meetings format and attendance. To Plan this at the January 2011meeting, nominate those to present and circulate GOSH epilepsy surgery discussion proforma. 2 5.Ketogenic diet services Update from Helen Cross: Finding those with Glut 1 deficiency are having the diet provided without a problem. There is a continuing resource issue. International meeting recently held in Edinburgh which was very well attended. 6. Paediatrician with a responsibility for epilepsy Update from Helen Cross: No additional information regarding this at present Ruby Schwarz commented that North West London hospitals do not appear to consider that there is a need for this as patients are referred to Great Ormond Street Hospital. Advised to refer managers to the NICE guidelines in order to support this. 7. NICE Guidelines 2010 Comments from BPEG were submitted. Discussion of recent Epilepsy Action letter which has been circulated. This was generally considered to be very critical of the Guidelines but without making any constructive suggestions or recommendations. Helen Cross commented that the guidelines are limited to review of treatment only. Have changed methodology using ‘GRADE Pro’ to review randomised studies. Did not include open label studies. The aim to produce a document which is practical. Cochrane and SANAD have commented regarding the methodology and Helen Cross is confident that the issues raised are being addressed. Further stakeholder review is planned from 23.12.10- January 2011. Helen Cross has questioned the issue of including protocols for the management of status epilepticus. NICE require that this is from a recognised NHS guideline development group-to check that RCPCH fulfils this criteria. 8. Renaming the EIG Logo for BPEG from Colin Dunkley approved by group. 9. Chair of BPEG due to stand down in January 2011. BPEG agreed the following process- to vote at the January 2011 meeting (those voting should have attended at least one other meeting in the previous 12 months).Secretary also due to change in 2011. 10. Research projects update i.Ketogenic diet in children under two years Helen Cross is pursuing funding for a ketogenic diet study in infants. Re-applying for this in February 2011. 3 ii. Centralised database for epilepsy (see above discussion) . iii. AED withdrawal study Study is in progress and recruitment has been broadened- the David Lewis centre is being involved. iv. Rasmussen encephalitis Update from Helen Cross: BPNSU study in progress. So far, the majority of cases are known to Helen Cross-please continue to notify patients. Helen is reviewing the Azathioprine data with the aim to produce a protocol for immunosuppression. v. Epilepsy in infancy study Helen Cross is planning a full South of England Study. At present excluding those presenting de-novo with infantile spasms. A full grant application in progress by Helen Cross, Richard Chin, Finbar O'Callaghan, Manju Kurian, Andrew Fry, Stefano Seri, Deb Pal and Gillie Baird. vi. I.V status epilepticus Update from Tim Martland: Recent funding application for the adult led study turned down. Possible joint study with USA- Tim Martland is joining a group at the AES meeting to discuss this. vii. PICANET study Update from Tim Marland: PICANET study (Refractory SE study). Continuing to collect data. Tim Martland attended an Intensive Care Society meeting to discuss possible further joint projects. viii. Migrating partial seizures in infancy Data is being collated and a paper being prepared by Rachel Kneen. ix. VNS study No further information at present. Chris Rittey is PI for a European retrospective study of VNS data. x. SANAD 2-Submitted one week ago. X1. Aston University MEG research programme Proposal for a multicentre study of MEG in the pre-surgical assessment of paediatric epilepsy Presentation from Stefano Seri: Stefano presented the outline of a project to study systematically the role of Magnetoencephalography (MEG) in the pre- surgical assessment of young patients with epilepsy. The study should allow the evaluation of MEG in the identification of the irritative zone and its relationship with the epileptogenic zone, as well as in functional mapping of eloquent cortex. At this preliminary stage he wanted to explore whether BPEG 4 members were in general interested in such a project. Discussion regarding the specific aims of the study, the position of MEG in the diagnostic work-up, modality of recruitment took place. Stefano was asked to provide a more detailed description of the study, but the group expressed interest in supporting in principle this initiative. New MEG at Aston which is designed specifically for paediatric patients is under construction. Adult study with Kings College Hospital comparing MEG data with intra-operative data recently completed. Opportunity for a multicentre research study. 1.Mapping iritative zone with MEG, 2. mapping eloquent cortex. Keen to study patients who have: completed initial investigations (phase 1 evaluation) and proceeding to surgery, (particularly those proceeding to invasive monitoring) and who have some interictal spikes. Aim to compare MEG data with intra-operative and outcome data. Keen to explore role of MEG in reducing morbidity and to examine plasticity following epilepsy surgery. GA not available at Aston but new scanner can accommodate movement problems in children. Will need good quality MRI to co-register data-can use MRI from other units. 3. Additional items for discussion: i.AED reduction for videotelemetry raised by Tony McShane and Zenobia Ziawalla. Discussion led by Zenobia Zaiwalla and Helen Cross: Case of child who died
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