Lucy Colgate
PFD Report
All Responded
Ref: 2021-0042
All 2 responses received
· Deadline: 9 Apr 2021
Response Status
Responses
2 of 2
56-Day Deadline
9 Apr 2021
All responses received
About PFD responses
Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.
Source: Courts and Tribunals Judiciary
Coroner’s Concerns
The evidence showed that:
1. who was Lucy Colgate’s Consultant Neurologist gave evidence that the risks posed to epilepsy sufferers from locked doors is a recognised risk but that the risk posed by having inward opening doors to confined spaces is not widely appreciated. If the door had been outward opening Lucy Colgate is likely to have survived.
1. who was Lucy Colgate’s Consultant Neurologist gave evidence that the risks posed to epilepsy sufferers from locked doors is a recognised risk but that the risk posed by having inward opening doors to confined spaces is not widely appreciated. If the door had been outward opening Lucy Colgate is likely to have survived.
Responses
Response received
View full response
Dear Response to Regulation 28 Report – Action to Prevent Future Deaths – 12 February 2021
My apologies for the somewhat late reply to your request. I can advise the following.
Epilepsy Action’s current position Our five advice and information officers were asked if blocked doors was a significant or frequent enquiry. Two said they had never encountered this. Three who have had calls on this subject report it to be a rare and infrequent occurrence. When it has happened it has related to bathrooms or toilets (small rooms) with inward opening doors where a person has had (or could have) a seizure, loses consciousness and becomes wedged against the door in the tight space preventing the door from being opened. The concern raised is not so much that it has happened but that the risk has been identified by the person concerned and they want to avoid it.
The low level of enquiries means our advice and information service doesn’t have a category specific to this issue. Enquiries of this nature would be classified under the general category of ‘safety’. In 2019, our Helpline advice and information service was used 11,771 times. 102 enquiries (0.87%) were about ‘safety’ in all its forms. In addition, there were 147 enquiries (1.25%) about daily living aids or adaptations which might also be relevant here.
What our current advice and information says Within our website advice and information section is a page https://www.epilepsy.org.uk/info/daily- life/safety/practical-guidance Here we advise the following:
• Have a bathroom door that opens outwards, or folds or slides open and closed. Then, if you fall against it during a seizure, you won’t block someone from getting in
Our written advice references bathroom doors only. This reflects the enquiries we receive. The same advice could be extended to any door to any confined space. We will make this amendment to our online information by the end of June 2021. Relevant printed information is due for reprint in July
2021. We will update this in the same way at that time.
The verbal advice given by our officers responds to the specific nature of the enquiry being dealt with. Currently, if appropriate, we already extend our advice to cover all doors to any confined space. This will continue.
What else we will do During the course of 2021 we will publish an article in our magazine Epilepsy Today to raise awareness about this issue. This will include referencing and signposting people to sources of funding that might be available such as grants for home adaptations.
During the course of 2021 we will notify our healthcare professional contacts about what we’re doing and why so as to increase their awareness about the issue and to guide them in providing appropriate advice to their patients.
We will continue to monitor the number and type of enquiries we receive on this topic and adapt our responding materials accordingly.
My apologies for the somewhat late reply to your request. I can advise the following.
Epilepsy Action’s current position Our five advice and information officers were asked if blocked doors was a significant or frequent enquiry. Two said they had never encountered this. Three who have had calls on this subject report it to be a rare and infrequent occurrence. When it has happened it has related to bathrooms or toilets (small rooms) with inward opening doors where a person has had (or could have) a seizure, loses consciousness and becomes wedged against the door in the tight space preventing the door from being opened. The concern raised is not so much that it has happened but that the risk has been identified by the person concerned and they want to avoid it.
The low level of enquiries means our advice and information service doesn’t have a category specific to this issue. Enquiries of this nature would be classified under the general category of ‘safety’. In 2019, our Helpline advice and information service was used 11,771 times. 102 enquiries (0.87%) were about ‘safety’ in all its forms. In addition, there were 147 enquiries (1.25%) about daily living aids or adaptations which might also be relevant here.
What our current advice and information says Within our website advice and information section is a page https://www.epilepsy.org.uk/info/daily- life/safety/practical-guidance Here we advise the following:
• Have a bathroom door that opens outwards, or folds or slides open and closed. Then, if you fall against it during a seizure, you won’t block someone from getting in
Our written advice references bathroom doors only. This reflects the enquiries we receive. The same advice could be extended to any door to any confined space. We will make this amendment to our online information by the end of June 2021. Relevant printed information is due for reprint in July
2021. We will update this in the same way at that time.
The verbal advice given by our officers responds to the specific nature of the enquiry being dealt with. Currently, if appropriate, we already extend our advice to cover all doors to any confined space. This will continue.
What else we will do During the course of 2021 we will publish an article in our magazine Epilepsy Today to raise awareness about this issue. This will include referencing and signposting people to sources of funding that might be available such as grants for home adaptations.
During the course of 2021 we will notify our healthcare professional contacts about what we’re doing and why so as to increase their awareness about the issue and to guide them in providing appropriate advice to their patients.
We will continue to monitor the number and type of enquiries we receive on this topic and adapt our responding materials accordingly.
Response received
View full response
Dear Coroner C Topping
Re: Lucy Patricia Colgate Regulation 28 – Action to Prevent Future Deaths
We have read carefully your report regarding the tragic and untimely death of Lucy Colgate and have discussed this with senior colleagues within the RCPCH Epilepsy Programme Board and with the British Paediatric Neurology Association’s British Paediatric Epilepsy Group in order to respond to your request.
The RCPCH supports, educates and develops paediatricians, and the wider child health workforce and services, to deliver high quality safe care for infants, children and young people. Given that we do not have all the details of the tragic death of Lucy Colgate, the RCPCH is unable to comment on the specifics of the case.
Children and young people with epilepsy need support to engage in an ongoing individualised assessment of risk and consideration of tailored accident prevention. The RCPCH Epilepsy12 audit supports trusts in England and Wales to measure on an ongoing basis how well they are evidencing risk assessment. The September 2020 report found that the majority (80%) of children and young people diagnosed with epilepsy had evidence of discussion regarding general participation and risk.1 The RCPCH continue to monitor and share audit results with local and regional teams and further urge quality improvement in this area.
The Sudden Unexpected Death in Epilepsy charity (SUDEP Action)) has produced resources for parents and carers to support individualised understanding and balancing risk for children living with an epilepsy.2 There may be opportunity to adjust specific advice regarding door opening in their information resources. At the moment the information leaflet makes this recommendation only for bathroom doors.
We will share learning around the circumstances of this death with our paediatric specialty groups who lead care for children with epilepsy and with OPEN UK3 (Organisation of Paediatric Epilepsy Networks) to disseminate warnings of these types of risks. We hope
1 https://www.rcpch.ac.uk/sites/default/files/2020-09/epilepsy12_2020_national_report_final_2.pdf 2 https://sudep.org/sites/default/files/sudep_childrens_hi.pdf 3 https://www.rcpch.ac.uk/resources/open-uk-organisation-paediatric-epilepsy-networks-uk 5-11 Theobalds Road London WC1X
that in doing so, families will be more aware of the key factors that are critical to ensuring suitable home environments for children and young people with epilepsy.
We are pleased that you have shared your report with Epilepsy Action who have a collection of useful resources to support safety at home.
Thank you for raising this case with us and reminding us of the importance of this work.
Re: Lucy Patricia Colgate Regulation 28 – Action to Prevent Future Deaths
We have read carefully your report regarding the tragic and untimely death of Lucy Colgate and have discussed this with senior colleagues within the RCPCH Epilepsy Programme Board and with the British Paediatric Neurology Association’s British Paediatric Epilepsy Group in order to respond to your request.
The RCPCH supports, educates and develops paediatricians, and the wider child health workforce and services, to deliver high quality safe care for infants, children and young people. Given that we do not have all the details of the tragic death of Lucy Colgate, the RCPCH is unable to comment on the specifics of the case.
Children and young people with epilepsy need support to engage in an ongoing individualised assessment of risk and consideration of tailored accident prevention. The RCPCH Epilepsy12 audit supports trusts in England and Wales to measure on an ongoing basis how well they are evidencing risk assessment. The September 2020 report found that the majority (80%) of children and young people diagnosed with epilepsy had evidence of discussion regarding general participation and risk.1 The RCPCH continue to monitor and share audit results with local and regional teams and further urge quality improvement in this area.
The Sudden Unexpected Death in Epilepsy charity (SUDEP Action)) has produced resources for parents and carers to support individualised understanding and balancing risk for children living with an epilepsy.2 There may be opportunity to adjust specific advice regarding door opening in their information resources. At the moment the information leaflet makes this recommendation only for bathroom doors.
We will share learning around the circumstances of this death with our paediatric specialty groups who lead care for children with epilepsy and with OPEN UK3 (Organisation of Paediatric Epilepsy Networks) to disseminate warnings of these types of risks. We hope
1 https://www.rcpch.ac.uk/sites/default/files/2020-09/epilepsy12_2020_national_report_final_2.pdf 2 https://sudep.org/sites/default/files/sudep_childrens_hi.pdf 3 https://www.rcpch.ac.uk/resources/open-uk-organisation-paediatric-epilepsy-networks-uk 5-11 Theobalds Road London WC1X
that in doing so, families will be more aware of the key factors that are critical to ensuring suitable home environments for children and young people with epilepsy.
We are pleased that you have shared your report with Epilepsy Action who have a collection of useful resources to support safety at home.
Thank you for raising this case with us and reminding us of the importance of this work.
Report Sections
Investigation and Inquest
An inquest into the death of Lucy Patricia Colgate was opened on the 12th May 2020 and resumed on the 12th January 2021. The inquest concluded on 29th January 2021. I found that the medical cause of her death was; 1a. Positional Asphyxia 1b. Uncontrolled Epilepsy I concluded with a Narrative Conclusion: Lucy Patricia Colgate suffered from generalised epilepsy which was poorly controlled on medication which had been appropriately prescribed. On the 28th March 2019 she had an epileptic fit at home and became wedged behind a door so that the door could not be opened. She was in a prone position. Paramedics attended promptly and managed to gain access to her within 20 minutes by which time she had suffered a hypoxic cardiac arrest through positional asphyxia and the effect of being in a post ictal state. She was taken by ambulance to Royal Surrey County Hospital but pronounced dead on arrival.
Circumstances of the Death
The circumstances of the death are detailed in the narrative conclusion.
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.