Written evidence from SUDEP Action
Introduction to SUDEP Action
SUDEP Action is the only UK charity dedicated to raising awareness of epilepsy risks, tackling epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and supporting those bereaved by epilepsy.
There are at least 21 epilepsy deaths a week in the UK, the majority who die are in the 20 – 40 age group. Around 50% of these deaths are SUDEP. At least 42% of epilepsy deaths are preventable.
Our tailored bereavement service helps people after an epilepsy-related death, through specialist bereavement support, counselling and casework including work on inquests. The Royal College of Pathologists guidelines on investigation of epilepsy deaths recognises SUDEP Action for providing support to families after a death. The guidelines also reference the Epilepsy Deaths Register (EDR) which was developed by SUDEP Action to provide vital information for researchers. It is a platform for professionals and the bereaved to provide information about the deaths of people with or suspected to have had epilepsy.
SUDEP Action works closely with researchers and specialists in the field to provide free tools and information on epilepsy risk management to people with epilepsy, clinicians. The work of SUDEP Action in this area has been recognized as improving patient safety and outcomes by awards from the British Medical Journal and the Health Service Journal among others, as well as gaining support from national bodies such as the Royal College of General Practitioners, Health Education England and the NHS Innovation Acceleration Programme.
We are almost entirely funded by bereaved families. Our staff team and trustees are led by people with experience of epilepsy and sudden bereavement. As so many epilepsy deaths could be prevented, the compelling motivation of many is to find answers and to save other lives. Our work with people bereaved by epilepsy brings support, risk awareness and prevention together.
Reason for submission
Consistent, high quality and humane investigation of deaths for people bereaved by epilepsy is vital. It should answer questions, bring families together with clinicians and others to understand what might be done differently, contribute to research and prevention and produce positive change.
Those bereaved are overwhelmingly motivated by i) getting answers so that they understand what has happened and ii) wanting what has happened to them not to happen to anyone else. That is also the coroner’s remit. The investigation and inquest can be a brutal process for the bereaved to go through, even if done in the right way. But if they can participate, they get answers, they advocate for prevention and the wider community benefits. More often than it should, the process doesn’t do this, the remit is lost and they suffer again.
In contributing to the sections below, we focus on epilepsy deaths, but they reflect the wider problems within the service.
1 Uneveness of coroner service
Sudden epilepsy deaths are nearly always referred to the coroner and a post mortem follows. After that, it is unpredictable. We are not able to say to bereaved families what will happen next, but have learned to be ready for problems.
Although awareness of epilepsy death and SUDEP is much better than it was, the investigation of a young person’s death still often starts on the wrong track: drugs or alcohol is suspected, or another medical cause, such as sudden cardiac death. Misconceptions can continue through the post mortem to the (wrong) cause of death statement and investigation conclusion. The coroner is in control here and can stop this happening, but has to act quickly and has to be informed.
The pathologist has a protocol to follow where there is epilepsy history but may not get adequate information from the coroner (and sometimes may not follow the protocol even so). The coroner may not have had enough contact with the family to find out more about the circumstances of the death or recent seizure history (which are not in medical records). If this happens, the death investigation can fail, to the anguish of the family who don’t get the right outcome or answers to their questions and ultimately to the detriment of prevalence statistics, public health priorities and prevention.
This might seem to a problem specific to epilepsy deaths, but it is not. It is a reflection of the unpredictability and uneveness of the service as a whole. It has been called a postcode lottery, but it might even be narrower than this: different coroners in a single coronial area can do things a bit differently. The unpredictability affects investigations, decisions about whether to have inquests, how quickly an email is replied to, whether you will get someone bureaucratic or empathetic on the phone, the guidance that is provided, whether you have to push for disclosure of information. The experience of the service for bereaved families often hinges on the sensitivity and receptiveness of the individual coroner or coroner’s officer and they may be working under quite extreme pressure.
To return to the investigation of an epilepsy death: if all goes to plan at the postmortem stage and SUDEP or epilepsy is recognised as the cause, the coroner’s next decision is whether or not to hold an inquest. Such a death often leads to a natural causes conclusion (because it usually arises from a naturally occurring medical condition). The coroner doesn’t have to hold an inquest. There are very good practical reasons not to - funding is very tight, so is staffing, and in most areas there are backlogs. Should these reasons dominate?
There is every good reason to have an inquest into an epilepsy death: there are modifiable risk factors for SUDEP and 42% of deaths are preventable. An inquest can interrogate this. Was there a delay in diagnosis, was care or treatment appropriate, was risk advice communicated? If evidence isn’t heard and tested at an inquest, is it really possible to say that the death has been investigated properly or to comply with the coronial oblgation to identify opportunities to prevent future deaths?
Our experience of coroners’ decisions about inquests ranges from a) those who would usually hold an inquest b) those who initially were not inclined to, but come to understand the rationale and may change their mind (often through family advocacy) and c) those who - once natural causes is concluded - would not hold an inquest. A coroner in this group told a family: “why would I hold an inquest for a natural causes death"? This is perhaps a revealing comment on the chances for thorough investigation and identification of death prevention opportunities (generally) in that court.
The inquest decision problem is much wider than epilepsy or SUDEP: it must affect many deaths that are preventable or where the coroner could make recommendations for change. The inquest is the only forum open to the bereaved to have the death scrutinised. This scrutiny should be consistent and done to a high standard.
All this is inextricable from the main problem: those bereaved are supposed to be at the heart of the service - as the 2009 Act intended. If they really were, it would be designed for them and funded properly. It is not just about being treated humanely and trying to avoid re-traumatisation. Without their participation (they have a lot of key information) the investigation is likely to be compromised.
It is unreasonable to expect anyone unversed in the system to navigate it without support, let alone someone in grief - this leads into the question of fairness.
2 Fairness in the service
The big inequalities are these: i) public funding for legal representation is not usually available for those bereaved, but organisations are routinely represented and publicly funded and ii) the misconception that this is a co-operative and purely investigative process.
The bereaved need to know what to do as soon as possible. They need to know that they can question and ask for information right from the beginning (within a few days of the death) so that the investigation gets off on the right track. They need to know their rights: to get documents in advance, to challenge decisions the coroner might make, to provide specialist information on a condition (like epilepsy), to ask for witnesses to be called. It may be too late if they don’t know their rights early enough or can’t do it themselves because they are suffering. Information without support and advocacy is not enough.
The experience of an inquest to the uninitiated can be completely alien. Others at the inquest have lawyers to represent them, families usually don’t. Everyone else seems to know what’s happening but them. It is hard to sustain the idea that inquests are not adversarial. Those bereaved ask: "why would a Trust need representation if the inquest is a transparent investigation into what happened?" "Shouldn’t I have representation in that case?" "I thought the focus would be on my child/sibling/partner. Instead it was a tactical game".
As a charity we support families, advocate for them and provide specialist input during the process. By supporting families, we absorb some of the effect of these inequalities. Is this really how the service wants to operate? And we do not replace legal representation. If the focus really was on the bereaved and recognising the role they play in getting to the right outcome and in prevention, things might be different. But, if this effectively adversarial system is going to continue, then families must be prepared, supported and funded just as other participants are.
What could change look like? We support the idea that when organisations are involved in inquests they should operate (or continue to operate) under a duty of candour so that the defensiveness which can be fostered by this system is abandoned. We know that most bereaved families do not want to get involved in damaging litigation and only embark on it when the system has failed them in their objective: to get answers. Accountability is important, but this does not necessarily mean legal redress. Often the most impact comes from individuals and organisations being free to acknowledge that things did not go as they should have done and committing to change that in the future.
3 Strengthening the coroner's role in PFD reports
First, families need to know that PFD reports exist and how they work so that they can make the connection between what has happened (e.g. a problem with diagnosis, management, treatment) and how the coroner may address this using a PFD report. They may need to be prepared to advocate for a PFD report. This means being empowered and supported to do this.
Sometimes the rationale for a PFD report is obvious, but it may not be. Even the most conscientious and experienced coroners are not going to be expert in every medical condition, its risk factors and prevention strategies.
We don’t blame coroners for not knowing that so many epilepsy deaths are preventable and how, but if they don’t know, they may not scrutinise the care or treatment of someone who died and miss the PFD opportunity. This is where family input may be crucial. With support, they can advocate for this and it can have a major impact. But if they are alienated or excluded from the process and the chance is missed, it is bad for them and bad for the process.
Coroners are sometimes assumed to have more power in this area than they do. They direct their PFD report to those they think can take action. The report is only a recommendation that action should be taken, but not what it should be. That is effectively the end of the process. The coroner can’t comment on the quality of the reply, or check whether a promise to implement change in a reply has been done. Positive changes may happen without scrutiny or an enforcement power, but it’s reasonable to assume that often they don’t. In our experience bereaved families may have to use the PFD report themselves to push for the change recommended in it – they shouldn’t have to.
We would like to see coroners have the power to scrutinise what happens after they make their report. They clearly have an interest in what happens and must be frustrated at the limitations they work under. But, realistically, unless they have more time and resource, this is difficult. The Chief Coroner gets a copy of each PFD report and makes an assessment of areas of concern “from time to time”. The Chief Coroner's role to be more proactive in this area.
A missing part of the PFD report process is a reliable, automatic way of making others aware, so that change can happen not just in the local organisation or Trust, but nationally. For example, PFD reports about problems relating to medical care are often copied to the CQC as well as the local Trust, but it’s not something the CQC has to reply to or do anything about.
The danger is that PFD reports are simply not noticed, valuable information about prevention may be lost and emerging themes from different coronial areas not seen or acted on.
We would support the idea of national, systematic scrutiny of PFD reports - in collaboration with other organisations involved in learning from deaths - to oversee what happens to the recommendations, to regularly report on trends or emerging problems and to see that good practice is disseminated and acted on.
4 Improvement in services for those bereaved
If the service is not going to change radically to focus on the bereaved, then the main improvement needed is to ensure the bereaved are empowered: through access to support first, then consistency from the service and equality of arms (funding for representation where others have it).
The service should also have help: better funding so that it is less over-stretched, an improved environment to work in, more time, bereavement and communication skills put at its heart.
The most important thing needed now is access to support and coroners hold the cards here. They know about the death within hours and can signpost to specialist organisations very early. For our charity, this means signposting to us as soon as the coroner or coroner’s officer is aware that the person who has died had epilepsy or seizures. In areas other than epilepsy death, we’d say the same: early access to support - ideally specialist support. As well as the practical benefits, it can alleviate the most severe effects of bereavement caused by sudden death.
The court environment should focus on the bereaved a little more. Coroners courts may be multi-purpose environments, with limited seating, nowhere to get a drink, nowhere private to talk, so there is an air of bureaucratic processing rather than thoughtful investigation. It shouldn’t be like this and of course it is a casualty of the funding problem, but it should be addressed.
These physical things perhaps don’t matter as much as other problems. But they can come to represent the whole experience: the culmination of a bruising six months or more lead-up to an inquest with little support or understanding from the system.
5 How the Coroner Service has dealt with C-19
Since the beginning of lockdown in March, we have seen C-19-related problems in the system. Unsurprisingly inquests have been adjourned – the investigation and inquest process is often protracted even in normal circumstances - four to six months or more from the date of death is not unusual. Delay is is hard, C-19 has made it worse.
When courts began to operate again after the initial period of lockdown, inquests were usually rule 23 or “read only” inquests. Inquests of this type are held when the coroner decides that the evidence is uncontroversial and it is not necessary to call witnesses. Statements are read by the coroner, there is no need for anyone else to be in court. With a backlog of inquests to deal with, and problems with travel, social distancing and witness availability it is not surprising rule 23 inquests are seen as a solution. They may be appropriate in certain cases. However, they represent lost opportunities for families if they don’t know if or how they can advocate for something different. Rule 23 inquests are unlikely to uncover evidence that might lead to a PFD report.
Some courts are using video-conferencing. This can affect the ability of those bereaved to participate effectively and to ask questions. It is a relatively recent experiment, but it needs to be planned and considered carefully with those bereaved as the focus.
We share the concern expressed by others about how the Chief Coroner’s guidance on workplace C-19 deaths and public policy might be interpreted and the chilling effect this could have on investigation into deaths that are by “natural causes” but could nevertheless have been prevented. Of course, we see the parallels with epilepsy death investigations. This, combined with the pragmatic approach that coroners are encouraged to follow during the pandemic must mean that families are not getting the answers they need and learning from deaths is compromised.
SUDEP Action’s research on the impact of C-19 on 27O families bereaved by epilepsy has found that the effect (and consequent public burden) of inadequacies in the system to tackle sudden epilepsy deaths is, for the majority, long-term trauma.
The last thing that families can do for the person who has died is to embark on this difficult process: to get answers, to see that the right conclusion is reached, to find out what happened and why, to try to make sure another family doesn't have to go through their experience in future. This is an important enterprise, for our whole community: it should be properly designed, funded and supported.