Jane Hanna’s story - Bringing epilepsy out of the shadows
Motivated by the lose of her partner to Sudden Unexpected Death in Epilepsy (SUDEP) more than 20 years ago, Jane Hanna OBE talks about her journey bringing epilepsy out of the shadows.
Q: Since losing your partner, you have made it your mission to find answers and reduce unnecessary deaths from epilepsy. You have helped to bring epilepsy out of the shadows and encouraged openness which has gone someway to removing the stigma associated with the condition. Did you find this difficult as someone without a medical background?
Jane: At the time I was a young barrister and teaching law at Oxford University. Alan had started having seizures nine months earlier, but we had been reassured that epilepsy was benign. This false reassurance meant that when Alan died, not only did I find the shock of Alan dying suddenly overwhelming, but also extremely difficult to understand.
After searching for some months for answers I came across Professor Stephen Brown who had written in the Lancet highlighting the lack of recognition of sudden unexpected deaths in epilepsy and realised that Alan had died and other people were dying because no one was doing anything about it. I decided that I would do all I could to reverse that.
Q: Your partner was only 27 when he died in 1990, you obviously didn’t know about the risks at that time?
Jane: No. The information I received on risk was limited – that there was nothing to worry about and that if Alan had a seizure to put a spoon in his mouth. These two bits of advice were both wrong. At the back of my mind though I was terrified of the seizures because Alan had generalised tonic-clonic seizures and his diagnosis was still quite recent, deep down I did worry that he might die. We kept being told there was nothing to worry about and there was so little support that in the end we too believed that there was nothing to worry about.
Q: Since then you have been determined to highlight the risks and reduce epilepsy deaths, what has driven you?
Jane: To begin with I was driven by the grief of losing Alan and in many ways I felt I was fighting for him. He was such a wonderful person and helped so many people and I felt a deep injustice that no research or work had been done to try to save him or others like him. I have been working in the field now for over 20 years and what drives me today is the need to do all we can to prevent these deaths, but there are so many other people involved now that today I can see a finishing line.
Q: You set up Epilepsy Bereaved to support others bereaved by epilepsy – how has this developed and how does it help more than from a generic support service?
Jane: The support service grew out of the experience of families and was something we set up to meet the needs that we understood following a Sudden Unexpected Death in Epilepsy. Many of us were also seeing counsellors. The general counselling services were helpful to us, but did nothing to meet our needs to understand what had happened and to support us on the journey that all of us felt we needed to take after the death. Post-mortems, inquests are extremely difficult processes as is the journey that families may take on to find answers such as helping research; raising awareness or fundraising for the cause.
We felt we needed a service that was caller-led and that could make that journey as easy as possible. In the beginning the service was run by the founders of the charity- particularly Catherine Brookes; Sheila Pring and Sue Kelk. As we grew the demands on the service meant we needed to develop from a volunteer service to a service run by professionals with a combined expertise in bereavement and epilepsy mortality and supported by a panel of pathologists and research experts.
Today we are proud that the service run by Karen Osland and Tracy Cowdry is a first class service tailor-made for families experiencing sudden bereavement whether from SUDEP, status, accidents or suicide.
Q: Did you have much support in the early years?
Jane: Yes I did. Friends and family were really important, but sometimes there is a need to talk to someone who does not know you and who you know will not be upset by the strength of your grief. I felt very extreme emotions in the early years and for two years I saw a counsellor who really helped me during those dark days. The support from the other founders of the charity – Catherine, Sue, Sheila and Jennifer Preston was also vital - that we knew that we were on a journey together and could help each other because we shared the same experience and passion for the cause.
Q: It has obviously been a long journey, was there one particular thing that you feel helped to change things?
The catalyst of change was the International research workshop we organised in London in 1996. This led to some break-through research in the late 1990’s which established that active seizures, mainly generalised-tonic clonic, were the main risk factor and although there have been many more research papers on risk factors, this has only strengthened the message – it has not changed it. In the UK it meant that we were in a position to get government funding to lead a National Audit of Epilepsy Deaths which found that 42% of deaths were potentially avoidable. It is still cited today in all national policy initiatives on epilepsy services. The international workshop and the Audit were both wake-up calls for the world community and were the beginning of the global conversation that has today brought scientists and organisations around the world together to address epilepsy mortality.
Q: How have things changed during that time?
The change is transformative. In the early years our experience was that many people did not believe in SUDEP and certainly did not want to talk about it. Today there is a consensus that SUDEP does indeed exist – that it is a priority that must be addressed –and that it needs to be talked about so that it can be addressed. A lot of work has already been done in research and awareness so that when someone says it is tragic but there is nothing we can say or do –there is a clear message from the medical literature that on the contrary there are things we can do to try to save lives. We can dispel the myth that seizures are benign and in a positive way inform people that some seizures can be risky and occasionally fatal and that is why it is important to take epilepsy seriously.
If people know that there is a good reason not to be complacent about their seizures, it may help all sorts of choices that people make such as whether to tell the doctor about another seizure; whether to take their medication or whether to be careful about drinking or too many late nights. The Chief medical officer in 2002 reported that the NHS did not take epilepsy seriously and that understanding the research on deaths would change this. There is still a long way to go but the work on epilepsy mortality, in particular the evidence from the National Audit has played a huge part in driving epilepsy up the agenda of the NHS.
Q: In the last 2 years have you seen a greater pace to things
In the last 2 years there is a real sense of movement on epilepsy and epilepsy mortality. We are no longer the only organisation in the UK pushing the cause of SUDEP. SUDEP appears in most news magazines of the epilepsy charities in a way it never did before and at SUDEP Action we have seen an increased demand on our team to work to support external initiatives in the UK and internationally. This year alone we have made a major contribution to events on epilepsy mortality organised by Epilepsy Action and Epilepsy Research UK as well as supporting developments in other countries so it does stretch us to the limit as a team. We need more funding so we can ensure when we are asked to provide help that we can always say yes.
Q: Globally what is happening?
Globally both the research effort on SUDEP and SUDEP awareness campaigns have really taken off. By 2012 working with Rosie Panelli and Denise Chapman in Australia and Tamzin Jeffs from SUDEP Aware we had distributed over 15,000 books on SUDEP – the global conversation. This partnership began in 2005 and was effective in reaching researchers; clinicians and policy-makers as well as supporters.
Research teams from all over the world have undertaken studies across most research questions relating to SUDEP over the last 10 years. International research collaborations are in place in Europe and in North America. Everyone is pretty clear about the direction for future research – where the gaps are and where evidence is weak. In the UK it has meant that we were able to put together a Statement of Research Need relatively easily that is supported by leading researchers across the UK and readers can view this on our site.
In some countries the funding needed to speed progress has been forthcoming. Most notably in the United States federal agencies have ring-fenced major funding for SUDEP research and the development of registries. In the UK national funding streams do not support register development and funding bids for major funding steams often falter in our experience because of the argument that the numbers of deaths are small compared with other causes of mortality.
Q: Do you feel The Epilepsy Deaths Register will help to change things and how?
At the moment, although there is research on deaths, the NHS has little to go on in understanding
deaths in their area. They have a few statistics but nothing else. By gathering information from reporters we can help change that. The more deaths reported to us the greater our opportunity to change things. Reporting in the first year of The Epilepsy Deaths Register over-took our expectations. This is an opt-in register like the epilepsy pregnancy register and we expected that like the epilepsy pregnancy register it would take some time to get support.
With over 300 people reporting we have some interesting data from the first year which we will be able to report to readers later this year. Many of the people who have reported have told us that the register has helped them by giving them somewhere to use their experience to help others. The information on the register will be used to help plug the information gap locally and nationally on epilepsy deaths. There has been international interest in our register and we have been invited to present The Epilepsy Deaths Register at an international conference in north America in June.
Going forward we have a collaboration with researchers across the UK. In particular we are working to develop professional reporting of clinical information and in addition plan to work closely with the Epilepsy Society Brain and Tissue Bank so that together we can ensure we have the greatest influence.
Q: How do you think the work of the charity has and will continue to transform the lives of people with epilepsy?
I hope whilst we have striven to make sure that the epilepsy community has the information it needs on epilepsy deaths that we have also helped ease the pain at times of all our supporters who are bereaved from epilepsy. Whether we have succeeded in transforming the lives of people with epilepsy is better answered I think by others and I felt very honoured last year in Montreal to receive an award for this from all the epilepsy organisations around the world. We will continue to punch above our weight as we always have because when you are fighting to save lives, that is what is required.
Q: And, what would you like to see for the future?
In the short term I would like to see all professionals and carers in the community access the training they need to understand better who is at risk; to help patients and families access the information and services they need to manage this risk, and to be in a better position to signpost bereaved families to SUDEP Action. I would also hope that with further investment in The Epilepsy Deaths Register we can improve surveillance of epilepsy deaths in the community.
In the medium to longer term I hope for an alert device that can warn people that someone is at risk of SUDEP and for research targeting epilepsy mortality which improves our understanding of individual risk and new interventions. I sincerely hope that by the time these are developed the work will mean that research has a better chance of being put into practice.