Jane Hanna OBE
Global Conversation
Copies of our new book Sudden Unexpected Death in Epilepsy: continuing the global conversation, our new book (2011) were snatched up by clinicians and epilepsy charities keen to learn about SUDEP research and action in UK and around the world. Over 10,000 Books have been distributed now by Epilepsy Bereaved, Epilepsy Australia and SUDEP Aware working in partnership on this vitally important project to increase understanding of SUDEP and stimulate research.
The solution to SUDEP will be a global one and since our first book – SUDEP – the global conversation (2005) was launched researchers and organisations dedicated to prevention of SUDEP have been working closely together to ensure that research efforts are focused where they need to be. We are thrilled that our North American partners in this have secured funding for myself and Dr Lina Nashef to be guest speakers and participate in an American SUDEP research conference in Chicago in June aimed at sharing and developing learning in the field.
Research
Our successful research pilot involving bereaved families in research with our partners at King’s College showed both the passion and the vital importance of bereaved families being at the heart of SUDEP research initiatives. Thank you to all the families that participated last year. In 2012 bereaved families can help research by contacting the charity and registering interest in helping research. Watch out for our next Enews !
Epilepsy Bereaved continues to work with SUDEP research teams across the UK. There is a clear programme of research that is urgently needed. National funding is not available for a UK SUDEP register. Epilepsy Bereaved is the only charity dedicated to funding and conducting SUDEP research and we are pleased that through the tremendous fundraising efforts of our supporters we made 5 small research grants to researchers who were then enabled to analyse national mortality data; track mortality post epilepsy surgical and other clinical interventions as well as pilot our bereaved relatives study. We urgently, however, need major grants to be awarded to SUDEP research if the UK is to continue to be a world leader in SUDEP Research. EB is leading on major grants for the voluntary sector in this area working with 5 research teams across the UK and are hopeful of success.
Westminster Update
Improving understanding of what research and action is needed now on SUDEP and epilepsy deaths more generally was helped by a debate on mortality; an Early Day motion at Westminster and a political meeting in Scotland.
It is wonderful that in 2012 so many organisations and individuals are talking about SUDEP and a real marker of the success of our SUDEP Awareness campaign. SUDEP Awareness remains important, but in itself will not deliver the evidence and action need to prevent deaths. The importance of SUDEP monitoring and research and ensuring lessons from existing SUDEP research are put into practice by clinicians and managers in the NHS was the key message of the extremely powerful speech by Paul Maynard MP. Paul Burstow, Minister praised the work of Epilepsy Bereaved in tackling SUDEP and also indicated that for future campaign work it was critical that epilepsy organisations engage with new local commissioners.
Epilepsy Society Alliance
We are delighted to announce our strategic alliance with Epilepsy Society which we are confident will ensure that both organisations working together can achieve more.
After a year of battle on whether GPs will take over responsibility for NHS services, last week Parliament passed the legislation that now makes this a reality. Epilepsy Society and Epilepsy Bereaved have been working together since last June as part of Neurological Commissioning Support to prepare for this radical change NCS receives government funding and is working across four neurological conditions, including epilepsy, to influence the new local NHS bodies. Funding and staff time makes it impossible for Epilepsy Bereaved to stretch resources to be working locally and nationally with Neurological Commissioning Support and actively with two umbrella organisations that are campaigning nationally – Neurological Alliance and the Joint Epilepsy Council. We are pleased that we are able, however, to continue to engage with JEC both informally and as members of the Neurological Alliance.
Epilepsy Bereaved Internal Update
Thanks to everyone who has fed back on our e-news. I am delighted that Janis Neil who worked with us on establishing this has already been approached by other organisations keen to copy our format.
Fiona
The EB team wishes the best to Fiona McDonald, our communications manager, who resigned in March after 5 years with the charity to take up a full-time position as communications and campaigns manager for a domestic violence charity in Wales. Fiona will be very much missed by all and I am pleased to say this is not a good-bye. Fiona is hoping to be part of our national conference in November. We are currently recruiting for a communications post and hope to introduce a new member of staff in our next E-news.
Introducing Vicky and Katie
EB is lucky that it can boost a staff team who are passionate in the cause of SUDEP and who will go the extra mile. We were pleased to welcome Vicky Pudner into the new post of Fundraising and Volunteer Officer and Katie Vale as Fundraising Assistant. Going forward Vicky and Katie will be pleased to handle any of your queries or requests as active supporters on the 01235 772850.
The staffing hours for the contact line have also been increased and Karen and Tracy are there for you to help by listening, helping with your individual questions on SUDEP; offering you an opportunity to help research or to take part in our new bereavement counselling service.
International League Against Epilepsy meeting 2011
