The period following the unexpected death of a young person is likely to be traumatic for family & friends, and this guide is intended to inform bereaved families the procedures The Coroner’s Service will use to determine the cause of death of your young person. When a young person under the age of 18 tragically dies, there will also be a formal process called a Child Death Review.
This guide has been created for CRY by Jeff Markham, a bereaved father and CRY Representative, to help other families at this devastating time. Jeff has worked closely with the West London Coroner’s Court, who kindly agreed to be consulted throughout the development of the guide, as well as CRY’s bereavement supporters. If you have any questions which have not been answered in this guide please email them to [email protected].
A Coroner’s investigation can be complex and can take several different routes in trying to establish the cause of death. We have outlined what we consider the most common form of investigation for CRY families, but should yours follow a different path, or if you need any additional information please contact the CRY office.
The length of time for an investigation will vary and will be dependent on the complexity of the investigation. Quite often one stage needs to be finished before the next stage can start, and the workload of the Coroner’s team may also have a bearing.
You will come across the terms “the body” and “the deceased” during the investigation and we are aware some CRY families find these expressions upsetting. However they are the terms used by the coroner and medical professions.
The numbering system used below should detail the likely chain of events, and can also act as a reference point. You may not wish to read all of this at once, so the following is an index of contents:
Cases are investigated by a Coroner for various reasons, but in most CRY cases it is because the cause of death is initially unknown. Coroners are independent judicial post holders appointed by the Crown, and they are qualified Barristers or Solicitors with a least five years legal experience. Some may also have a medical background. The case will start when The Coroner receives the referral, usually from a GP, hospital or the police. The Coroner will decide the appropriate route to take, and appoint a Coroner’s Officer for your case. This officer will gather much of the evidence, and will normally act as your liaison with the Coroner. If you need to contact the Coroner, or need any information regarding the case, you should normally go through the Coroner’s Officer. The officer should give you a copy of the services own Coroners Guide, and this will outline the role of the Coroner along with their and your responsibilities during the investigation.
Initially The Coroner’s Officer will normally contact your family by telephone, explain their role, and ask to speak to the next of kin. This will be either a parent, or if the deceased was married, the husband or wife. The officer will be trying to gain any information that will be relevant to the young person’s death and they may need to ask some questions which families may find upsetting. The Officer may need to rule out foul play, the person’s state of mind, and if illegal drugs were involved. Please remember in asking these questions the Officer is only trying to determine the facts. Building and maintaining a good working relationship with your Coroner’s Officer can make a difficult process a little easier. We recommend keeping a record of conversations, actions requested and their outcome, and any agreements reached. We also recommend you keep copies of all correspondence and emails.
The next of kin can request to The Coroner’s Officer that another family member act as next of kin. (ANK) The ANK will not have legal status, but will be the liaison with The Coroner’s Officer for the duration of the investigation. There are situations where this may be helpful, particularly as some conditions may be genetic, and have ramifications for blood relatives of the deceased.
If you are the partner of the late loved one, but you were not married or had a civil ceremony the position of who is the next of kin can be complex. We would hope you and the parents / siblings of your late loved one can work out who is going to act as ANK, and some Coroners / Coroner’s Officers will only want to liaise with one person.
The ANK should be able to answer questions about life style, any medication the young person was taking, and will need to act as the co-ordinator for the rest of the family. He / she must be contactable by The Coroner’s Officer.
The Coroner’s Officer will want to discuss family history, medical history or ask if there are any other factors the ANK believes may be relevant. It is important that any drugs or medication the deceased was taking are divulged, as certain drugs can be linked with Sudden Adult/Arrhythmic Deaths. (SADs). Accessing the deceased medical records would be part of the Coroner’s investigation, and the Coroners Officer will not need to seek permission from the ANK.
If the cause of death is not obvious the Coroner’s Officer will telephone to advise the ANK that a post mortem will take place and this will be conducted by a pathologist appointed by the Coroner. In most SADs cases the Pathologist will commission various tests that have been identified by the Coroner. If you want more information, The Coroners Officer will give you details of the tests.
The toxicology tests and others may give an indication as to the cause of death, and the Coroner’s Officer can give details of the tests to be undertaken. Research has shown that in 13% of SADs deaths a spleen sample taken may help to make a genetic diagnosis of the cause of death. (See video clip no 3) You may want to make a request for samples to be retained. This request would normally be directed through The Coroner’s Officer. (See video clips no 2, 3, 4 and 5). The CRY CCP may also ask to retain samples for future research.
The Coroner does not need to request permission from the ANK to take these samples, but must seek the ANK`s wishes regarding their disposal / repatriation following the completion of the tests. Any samples taken should be available for repatriation within 28 days. In exceptional circumstances, repatriation may take longer.
The Coroner’s Officer should telephone to advise the results of initial post mortem and toxicology tests are available
If the results of the Post Mortem are inconclusive, The Coroner’s Officer will then advise if any further investigations are needed and may refer to a specialist cardiac pathologist. In around 80% of CRY cases the Coroner will ask The CRY Centre for Cardiac Pathology (CCCP) to perform an expert cardiac post mortem. This is not a legal requirement, but if the Coroner does not offer the service, you could ask them if they would refer to the CRY CCP. CRY will fund the referral. Information about how the coroner can make a referral to the CRY CCP
The CRY Centre for Cardiac Pathology is funded by CRY to help families and Coroners understand the cause of death, as well as help inform the clinical cardiology testing of first-degree blood relatives. (See video clips no 3 & 4)
The CCCP will endeavour to conclude the testing and return the heart within two weeks, in time for burial / cremation. The CCCP report will be sent to the Coroner / Pathologist, and the Coroner’s Officer should make these findings available to the ANK.
(What if future deaths may be prevented? Sometimes a coroner’s investigation will show that something could be done to prevent other deaths. If the coroner considers this to be the case the coroner must write a report bringing this to the attention of an organisation (or person) who may be able to take action. This is called a ‘report to prevent future deaths’ or a ‘Regulation 28 Report’. The organisation or person must send the coroner a written response, within 56 days, to the report, saying what action it will take as a result. If you would like to see a copy of the report and the response, you should let the coroner’s office know. The reports are also published on the Chief Coroner’s website
At some stage The Coroner’s Officer will advise the ANK that your late loved one is able to be seen by family members, and the ANK should make this information known to all other family members. The decision to view your late loved one is a complex one, and different family members may have different views.
There is an argument that supports the idea of remembering the person as they were in life, and therefore not viewing your late loved one, but some people believe seeing their late loved one will help them come to terms with the death. It is also possible there may be religious or cultural views to consider, and your late loved one may have let their own thoughts be known to some family members, or left specific instructions possibly in a will.
You may wish to consider leaving viewing your late loved one until they are in the care of the undertakers, and the Coroner’s Officer may offer some advice on this.
When the cause of death has been established, the ANK will receive the post mortem with a letter from the Coroner informing of the cause of death.
The post mortem report will detail the findings of the Pathologist during the autopsy, and some families may find it upsetting to read. You may wish to consider how, when, or if you are going to read this, and in some cases your GP may assist by going through it with you.
If the cause of death has still not been established the Coroner will order an Inquest. With modern scientific investigations possible, we have seen a decrease in the number of cases referred to Inquests. If you need advice on a potential inquest please contact the CRY office.
Once the cause of death has been established, the ANK will receive a registry document detailing the cause of death for someone to register with the local council. This needs to be done in person, but not necessarily by the ANK. The Coroner’s Officer should explain to the ANK where and when a Death Certificate can be obtained
Once the Coroner has established all investigations regarding your late loved one have been completed, and the family have identified which funeral directors they are using, the Coroner will issue the mortuary release form, and if required a cremation or burial order. At this point your late loved one will be released for burial/cremation.
Certain undertakers run a service linked through the Co Op and offer free burials to young people under the age of 18.
The Coroner’s Officer will inform the Registrars when the Coroner has concluded their investigations, and will use one of four appropriate forms to do so.
The Registrars will attribute an International Classification of Diseases code, (ICD) to the cause of death, and this will determine the way the death is recorded by the Office of National Statistics. (ONS) The system uses a numbering system to code all causes of death.
If the young person died while abroad, different circumstances may apply. Each country will have their own set of procedures, and in some countries it will be the police that conduct inquiries. Sometimes these enquiries can take longer than investigations in the UK, and you may be faced with communication issues.
For specific advice you may wish to contact the Foreign & Commonwealth Office, your local undertaker or the CRY office.
Normally, before your late loved one can be repatriated, a local doctor’s report and Death Certificate will be necessary, and then your late loved one will need to be embalmed and a certificate issued. The embalming process will prevent further medical microscopic investigation, and therefore it will be essential to conduct this before the embalming process takes place.
The CRY Centre for Cardiac Pathology (CCCP) may be able to liaise with overseas authorities to ensure samples are taken prior to embalming, and for further advice on this please contact the CRY office.
If the cause of death is found to be SADS, or a previously undiagnosed cardiac condition, it would be recommended that all first-degree relatives are referred to a specialist cardiologist. CRY can help to give advice about this, please contact CRY’s support team at [email protected] or on 01737 363222 for more information. The final post mortem report helps to guide the most appropriate screening for the family and is very important for the cardiologist.
The six video clips expand the information contained in this text, and may present the information in a way you may wish to view and discuss as a family group. The clips total around 60 minutes and you may wish to view them as appropriate. Each clip will explain a specific area, but when looking at them all, you will note how the specialisms work together in trying to establish the cause of death of your young person, and any ramifications for surviving blood relatives.
We hope this Guide along with the six video clips give you an insight into the processes and decisions you will face. Each investigation is unique, and it is difficult to ensure it covers every eventuality. Should your investigation take a different path to the one described, or you feel the guide should contain additional information please contact the CRY office.
This guide has been created for CRY by Jeff Markham, a bereaved father and CRY Representative, to help other families at this devastating time. Jeff was assisted by a pilot group of three bereaved families, and CRY would like to thank them all for the time they invested in producing this pathway, and also the West London Coroner’s Court who kindly agreed to be consulted throughout this project.
Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.
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