September 17th, 2015
Dear Women’s Hockey Team,
It is a while since we have written to tell you what your support has enabled us to achieve. Thank you so much for your help in targeting epilepsy deaths in memory of Emily Sumaria. You are receiving this detailed update as you have made such a significant contribution to our work over the years.
The financial year which ended March 2015 was our best ever in terms of income. We raised just over £377,000. We have come a long way since being launched 20 years ago around a kitchen table. This has enabled us to forge forward with some really important work aimed at preventing epilepsy deaths in the long term.
This letter will aim to highlight some of the key areas of progress as follows:
1. Support service
2. Epilepsy Deaths register
3. Research
4. Awareness
1. Support
Sadly, we still support hundreds of bereaved people every year. Some of these are recently bereaved and going through the raw agony of the first weeks. Others were bereaved many years ago, but find themselves needing support again. As part of an ongoing trend, more people are making initial contact via social media than through the phone and we are adapting to these changes, although making sure we are still available through more traditional channels.
This year has seen the launch of volunteer-led coffee clubs, offering an opportunity to bereaved families to meet locally face to face. The first two meetings have already taken place in West Wales and in the South-East and feedback was very positive:
“A sense of not being alone. The chance to share how we cope – or not”
We have more coffee clubs planned in Leicester, Bury St. Edmunds, Lancashire as well as others to come in North Wales, the South-West and the North-East. We continue to offer counselling to those who need more in depth help to come to terms with their bereavement, although this is an area we struggle to get funding for from institutional funders such as trusts and foundations.
2. Epilepsy Deaths Register
We have now received a total of over 460 registrations to the Epilepsy Deaths Register. The more we are able to encourage people to register a death, the more likely it is that we can get the attention of policy makers by demonstrating to them the sheer scale of the problem. We are beginning to be in a position look for emerging patterns in those deaths. Around 33% of those who died were either in school, college or higher education. The most common age of death (or modal average) was 22. This highlights the extent to which deaths are happening in “low-risk” groups compared to studies which SUDEP Action commissioned years ago, there appears to be a much greater incidence of SUDEP being recorded as the cause of death by coroners. This indicates greater awareness of SUDEP amongst coroners and pathologists. The vast majority of deaths reported have come from parents, although we are beginning to see some reports in from health professionals. We have 28 coroners signed up to trial a reporting template. We hope that we can encourage all coroners to report relevant deaths to the register. They are not obliged by law to do it, but we a meeting with the Chief Coroner in January gave us hope that a strong lead may be given on this issue.
3. Research updates
WADD project
Last year in June, we launched an appeal to raise £165,000 to fund a project which Professor John Duncan of UCL and the National Hospital for Neurosurgery and Neurology is working on. To date, we have raised £153,626 of that total and have a meeting scheduled in September to firm up project milestones and start dates. For us this was an ambitious appeal (our typical annual income when we launched the appeal was £280,000) so we are really pleased that supporters like you have helped to make this project a reality. The researchers will test the wearable apnoea detection device on at least 50 patients with refractory epilepsy in the EEG video telemetry unit at the National Hospital in London.
Research into causes of epilepsy deaths
A significant piece of research was published last autumn examining the contributing factors in non-SUDEP epilepsy deaths. The review paper was written by a third year clinical medical student, supervised by Professor Ridsdale, Chair of Neurology & Psychiatry Teaching and Dr Cousins at King’s College London. It examined mortality, suicide and accident rates together with risk factors for mortality including; substance-related disorders, psychiatric disorders, accidents and non-adherence to anti- epileptic drugs (AED).
The review found:
- Being seizure free (no seizures within the previous 12 months) was associated with a lower mortality rate
- Not taking epilepsy medications increased risk by 50%.
- People with a psychiatric disorder and people misusing alcohol were high risk groups.
- The incidences of depressive symptoms are significantly higher in people with epilepsy compared with the general population and patients with other long-term conditions.
- People with epilepsy were over three times more likely to commit suicide.
- Being diagnosed with a psychiatric disorder was a strong risk factor.
- The risk of suicide was increased for patients who were not seizure free.
Findings on Accidents:
- Accidents were the third cause of greatest excess mortality in people with chronic epilepsy.
- Not taking anti-epileptic medication increased the risk of accidents by 50%.
- People with a psychiatric disorder or misusing alcohol were at increased risk of death from injury.
SUDEP Centre without Walls
Sudden Unexpected Death in Epilepsy (SUDEP) is now a growth area in epilepsy research around the world. In the US, The National Institute of Neurological Disorders and Stroke (NINDS) is funding an initiative called the SUDEP Centre without Walls. This effectively means US$5.9 million of funding which will encourage collaborations, including sharing of data and resources, between 9 groups of scientists. The research teams will share the $5.9 million to work together to speed up the pace of research on Sudden Unexpected Death in Epilepsy (SUDEP), the leading cause of death from epilepsy.
The nine research teams that will benefit from the funding will work on a range of research questions including identifying bio-markers and predictive tools of individual risk. One of the teams will be looking at identifying genes that contribute to SUDEP and test candidate drugs that may reduce the risk of unexpected death. SUDEP Action is playing a small part in this work by collaborating with the UK arm of the SUDEP Centre without Walls, based at UCL, which is investigating the neuropathology of SUDEP. The large-scale nature of this research was unthinkable back in 1996, when we convened the first conference to define what SUDEP was.
Other research
There have also been major research studies conducted on:
- Mortality from Sudden Unexpected Death in Epilepsy in adults with intellectual disability
- Discussing SUDEP in Scotland. Around 34% of patients had a documented discussion of SUDEP. This compares well with previous figures of around 4%, but the minority of patients are still not being informed, with those at higher risk less likely to be informed.
- Association of prone position with Sudden Unexpected Death in Epilepsy. Although researchers concluded that prone position is a major risk factor for SUDEP, particularly in patients aged 40 years and younger, this research is not able to distinguish between patients who were sleeping prone and those who may have turned face down during a seizure.
Further details on these and other significant research papers are available at:
https://www.sudep.org/latest-research-sudep
4. Awareness of SUDEP and Epilepsy Deaths
When SUDEP Action was first established, primarily as a bereavement support charity back in 1995, most people had no idea that you could die from epilepsy or that anything called SUDEP existed. There was also little awareness that epilepsy could contribute to depression and other mental health issues, which put people at increased risk of suicide. Attitudes are beginning to change and SUDEP Action has been at the forefront of lobbying for that change. We believe that all people with epilepsy should be told about their risk, but in such a way that they feel empowered rather than scared. Bearing this in mind, we have launched two tools this year which will have a significant impact on enabling people with epilepsy to assess and reduce their own risk.
The SUDEP & Seizure Safety Checklist
This is a tool developed for doctors to use in clinic, based on an Excel spreadsheet. It uses the latest research into known risks for epilepsy deaths and SUDEP to prompt Doctors or nurses to ask a series of questions to the person with epilepsy to gauge their risk levels. The checklist was developed following a comprehensive literature review and a 9 year SUDEP population study. Previously unrecognised findings included: only 20% of people with epilepsy had contact with specialist services in the year prior to death and in most deaths there was a noted clinical worsening of seizures in the previous 3 to 6 months. One half had a record of alcohol misuse, and a quarter had been taking drugs to treat depression or anxiety.
The checklist was introduced into routine practice in Cornwall. We obtained feedback from over 200 participants. Over a two year period 80% of people with epilepsy, accessing Cornwall epilepsy services, had their SUDEP risk assessed and recorded. 98% of PWE/carers responded positively to the use of the Checklist, whilst 2% were neutral. Interestingly, 17% of PWE monitored using the Checklist received a step-up of care with interventions that would not have happened otherwise.
The SUDEP and Seizure Safety Checklist was launched nationally in July and we so far have 55 doctors and nurses using it in clinic. We obviously hope this number will go up significantly with time. Health Professionals can access a copy at https://www.sudep.org/checklist. Pease feel free to share this information if you know someone who is a doctor or epilepsy nurse.
EpSMon
At the same time as launching the checklist (above) we also launched a mobile phone app aimed at people with epilepsy to help them understand their risk factors. This effectively translates the SUDEP and Seizure Safety Check List 2015 into a patient-friendly digital version. People with epilepsy can run through a series of questions about their epilepsy and their lifestyle. The app will then suggest changes they could make to reduce their risk of dying, or suggest making an appointment with their Doctor for a review, if appropriate. The EpSMon app is available for download on the ioS platform for £1.49.
To date just over 150 people have downloaded and are using the app. We realise this is a drop in the ocean, but hope that this will continue to grow with time. In addition, an Android version of the app is currently being developed. Over 80% of smartphones use Android currently, so this will help to grow usage figures. This is a unique tool which makes information previously only available to scientists in the hands of people with epilepsy, enabling them to make their own decisions about reducing their epilepsy risks.
International League Against Epilepsy
These new tools will be presented to 3,000 of the world’s leading epilepsy specialists in September at the International League Against Epilepsy Conference. There are already several countries who are interested in adapting EpSMon and the SUDEP & Seizure Safety Checklist for their own countries, so we have high hopes that these tools will help to prevent epilepsy deaths in other countries around the world.
Purple Day
SUDEP Action was proud to be an official partner of Purple Day for the first time in 2015. This is an annual event on March 26th, which was established by a young girl in Canada to raise awareness about epilepsy.
SUDEP Awareness Day
We will be holding our 2nd International SUDEP Awareness Day on October 23rd 2015. This will become an annual event, raising awareness of SUDEP and how people with epilepsy can reduce their risk. We held our first one in 2014 and it was a considerable success:
- It was supported by 45 other epilepsy or linked to epilepsy organisations around the world.
- Our information was shared 747 times on Facebook and 345 times on twitter.
- 330 people downloaded leaflets from our website (compared to 6 on a normal day)
- We had 13,145 page views on our website (compared to 567 on a normal day)
- We reached a readership of 4 million through newspapers, radio and digital news outlets
- 21 GPs were visited by our volunteers with call for openness messages
- 10MPs attended reception in the House of Commons, hosted by Ed Vaizey
- Supporters and staff raised £1500 on the day
This year, we hope for even greater participation from supporters and other epilepsy organisations around the world. If you would like to help by sharing your story or contacting your GP please do get in touch by phone or email to info@sudep.org or 01235 772 850. We will be holding a “home-made” stall in Wantage town centre on the day to raise awareness and funds. So far we have chilli jam and pickled onions ready! We are also planning a pumpkin carving party and hope to have some pictures to post online of our efforts shortly.
Overarching aim:
- Raising awareness of SUDEP and how people with epilepsy can reduce their risk
- To reach as many people as possible with epilepsy and let them know practical ways they can reduce their risk of dying
- To help families bereaved by epilepsy to find us and access support from us
- To help to keep the memories of those who have died alive
- To raise awareness of SUDEP amongst the general public so if they meet someone with epilepsy they talk to them about it Health Professionals and their role in raising awareness
We have a growing number of Doctors, Nurses and Neurologists on our database who are keen to be updated with our latest news. SUDEP Awareness day is part of an ongoing campaign to ask them to be open about the risks associated with epilepsy.
We have also developed an e-learning module which is aimed at health professionals to help them have the “SUDEP conversation” with people with epilepsy. Due to the effort which was needed to get the EpSMon project off the ground, this has taken somewhat longer than we originally intended. It should, however, be ready by the end of the year. Each module requires a 20 hour commitment from the student and contributes towards their Continuing Professional Development (CPD) Points. We are hopeful that this will promote a wider degree of openness about epilepsy risk amongst those in the medical community who lack the “soft” skills or confidence to talk about SUDEP without frightening people.
I hope this gives you a useful overview of what the charity has been up to and involved in. We are pretty busy. Our income is slowly growing which means we can continue to do more in the fight against epilepsy deaths. Thank you for the support and confidence you have shown in the SUDEP Action team.
It will be 20 years in October since 5 bereaved women sat around a kitchen table to start a charity to investigate Epilepsy deaths. Although there are still far too many tragic deaths each year, it is beginning to feel as though we are making progress. I do hope you agree.
With best wishes,
Rachel Groves
Fundraising & Operations Manger
SUDEP Action
