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Valerie Vaz MP, Tere Minutes of the Meeting: 15 July 2015 Committee Room 9 Chair: Valerie Vaz Co-Chair: Teresa Pearce Attendees: Valerie Vaz MP, Teresa Pearce MP, Prof Helen Cross (GOSH/ICH/Young Epilepsy), Calvin Down (RCPCH), Amit Bali (Whittington Health), Carol Long (Young Epilepsy), John Cowman (Young Epilepsy), Mike Keighley (The Meath Epilepsy Trust), Simon Wigglesworth (Epilepsy Action), Sarah Vibert (Epilepsy Society), Roger and Monica Kendall (Epilepsy HERE), Samantha Ashby (SUDEP Action), Graham Faulkner (Daisy Garland), Prof Brian Neville (GOSH/ICH/Young Epilepsy), Dr Kerry Robinson (Whittington Health), Dr Dougal Hargreaves (UCLH), Dr Ahmed Ahmed (Central & NW London NHS Foundation Trust), Nathan Partridge (CDKL5UK), Elanor Meller (GSTT), Sallieanne Gould (ESUK), Andy Martin (NHS England), Kate Fairhurst (parliamentary researcher, Cheryl Gillan MP), Antonis Kalemis (HOPE London), Dr Chelvi Kukendrarajah (Central & NW London NHS Foundation Trust), Janet Williams (in-FACT), Emma Murphy (In-FACT) and Emma Tingley (Young Epilepsy) 1. Welcome - Valerie Vaz MP (APPG Chair) The chair welcomed those attending and updated the meeting on the AGM held on 24 June 2015 where the following were elected as officers to the APPG. Chair: Valerie Vaz MP Vice Chairs: Cheryl Gillan MP,(Con); Andy McDonald MP ( Lab); Greg Mulholland MP ( Lib Dem) and Paul Maynard MP( Con ); Secretary: Teresa Pearce MP The secretariat function of the APPG is now being provided by Young Epilepsy on behalf of the Joint Epilepsy Council and Emma Tingley is the point of contact. The chair formally recognised the achievement of Professor Helen Cross in being awarded an OBE in the Queen’s Birthday Honour List this year for her national and international work in childhood epilepsy. The meeting circulated a letter of thanks to Laura Sandys for all her work as the previous chair of the APPG. 2. Epilepsy12: ensuring quality in children's epilepsy services - Calvin Down (Project Manager) Summarised the components of this national audit of paediatric epilepsy services: i) Service provision ii) Clinical audit (via retrospective case notes analysis) iii) Patient Reported Experience Measure (PREM): Parents, carers and young people with epilepsy were invited to complete a questionnaire on their experiences of the care that they have received from their local epilepsy service over a 12-month period. To date Epilepsy12 has gone through two rounds of audit, producing a national report of round 1 in September 2012 with the report of round 2 being launched in November 2014. Findings from Round 2 showed some significant improvements including: more than two thirds (68%) of units reported having a local children’s Epilepsy Specialist Nurse (ESN), compared to just over half (53%) in the first round more children newly diagnosed with epilepsy received input from a paediatrician with expertise in epilepsy (87% in this audit compared to 79% in the first audit) there was a significant expansion in specialist epilepsy clinics, with 2 in every 3 units (66%) reporting the availability of a weekly clinic, compared to 58% in the previous audit However one third of patients still do not have access to an epilepsy specialist nurse; better access is needed to paediatric neurologists for children with more complex epilepsy; and we still need to work towards all services that manage children with epilepsies having at least one consultant paediatrician properly trained in epilepsy PREMdata identified significant concerns from children and parents regarding how professionals work together in epilepsy services; the information that patients and families are given and the environments in which children and young people are seen. The RCPCH has been successful with its proposal for paediatric epilepsy to continue as a topic within the national audit programme with widespread support across the epilepsy community. A formal open tendering process for a 3rd round is being launched, with an audit specification development meeting with HQIP scheduled for October. 2. World Health Organisation: impact of the epilepsy resolution on the UK - Professor Helen Cross OBE (Prince of Wales' Chair of Childhood Epilepsy) Summarised the WHO global resolution on epilepsy recently passed at the WHO meeting in May 2015. The resolution was supported by 29 countries including the UK and outlines the global burden of epilepsy and the need to improve both treatment and education around the condition in both developing and developed countries across the globe. Included is a request from the Director General to report back on improvements in three years. There is a significant need to engage with issues outside of health, ensuring that social care, education and adult care sectors are all engaged. Specifically there is urgent need for paediatrician training, planning for transition to adult services and improved services for adults. Discussion followed on the importance of good communication between doctors and families on difficult subjects such as SUDEP (sudden unexpected death in epilepsy) and risks associated with the condition; the importance of reporting against patient outcomes in addition to patient experience; establishing and strengthening the links between social care and education sectors and the need for significantly improved engagement with these sectors (inc CQC & OFSTED) and the levers that will enforce change; clear need for an epilepsy registry across all patients (paediatric and adult); the challenge of stigma; the state of adult epilepsy services across the UK; the challenge of budget resources and the need for greater training on epilepsy across sectors. Actions for APPG: o Invite Minister and representatives from CQC and OFSTED to APPG meeting o Propose wider discussion regarding the WHO resolution in Parliament 4. Integrating Epilepsy Care - Dr Amit Bali (Darzi fellow) Summarised the work that has been carried out over the past 9 months following reports that outcomes for children and young people with epilepsy had not improved as hoped. Reflected by national audit (Epilepsy12). Aim of work is to identify issues underpinning lack of improvement and solutions to improve care. Widespread agreement that fragmented services have been holding back progress, and a better integrated system is needed, across the health, education and social care sectors. Overwhelming consensus that accessible data (at a patient and population level), improving communication (between families and professionals, and between different professionals), a strategic, whole-system view (i.e. across all relevant sectors) and a tailored approach, taking account the unique combination of needs of each CYP with epilepsy, are the enablers to leverage progress in improving outcomes. Four workstreams identified to realise the potential of an integrated approach: 1. Establishing an epilepsy registry – successfully used in other conditions, a national registry would lead to service level benefits, better planning and design of provision, improved coordination of care and robust audit. For patients, individual outcome data can be tracked therefore allowing more person-centred annual reviews and individualised planning. There is widespread support from patient groups, NHS England, RCPCH and Epilepsy12. The next step is to obtain section 251 approval (Health and Social Care Act 2006), from Secretary of State for Health & NHS Health Research Authority. 2. Developing a standardised template for individualised education health and care plans – currently there is wide variation and an opportunity to track relevant outcomes. Initial scoping work has been undertaken. 3. Co-creating networks for young people with epilepsy (and parallel parent networks) - need to connect young people with epilepsy effectively and in a sustainable way. Young people want to have their voices heard – and also that professionals within services want to hear their voices. A pilot project in Islington is being developed. 4. Commissioning a whole-system health economics analysis to map the advantages of an integrated approach – this is crucial in quantifying the benefits of a multi-sector, integrated approach to epilepsy care, and it will underpin much of the other work. The aim is to look across the life-course of children and young people with epilepsy, and quantify the benefits of receiving the appropriate interventions (from health, education and socio-economic sectors, versus the disbenefits of not getting the appropriate care. The advantages of an integrated approach can be mapped out with such an analysis, including the cost and the potential contribution of CYP with epilepsy. This work will take a whole-system view. With such an analysis, it will be possible to quantify the potential cost- savings of providing the appropriate care at each point across the life-course. As such, it would be possible to state how money spent on the appropriate intervention at the correct time, will save money downstream. Discussion followed on extensive under recognition of problems in childhood epilepsy (CHESS study) and need for OFSTED to measure outcomes for these children, recognition of the inequalities in the UK and the need to measure the social and financial impact of epilepsy in the UK; need to recognise the needs of the elderly with epilepsy and discussion around how to reach this group, Epilepsy Action research indicates that there is only on geriatrician that specialises in epilepsy in the UK, but they have produced guidelines to support health professionals working
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