- Introduction to Action Plan
- Pathology and post mortem investigations
- Improving care, management and treatment of epilepsy
- Information provision
You can read the Department of Health's Action Plan below, with comments by Epilepsy Action and the Joint Epilepsy Council are in the boxes:
Pathology and post mortem investigations
The audit found that it was difficult to establish the number of epilepsy related deaths from national data. It found:
- There are no specific guidelines for the investigation of epilepsy specific death.
- Death certification was of poor quality.
- Two-thirds of pathologists indicated that they had no mechanism to inform relatives about post-mortem results.
- Little evidence of contact with relatives after death with only 10 per cen of families contacted by a specialist and 7 per cent by a GP.
Department of Health response – how we will make improvements
1. There is a range of new and existing strategies in pathology and post mortem services which will help to address shortfalls in current practice and improve information and support for bereaved carers and families of people with epilepsy:
a. Post mortems have an important role to play in clinical audit and improving care for future patients. The Royal College of Pathologists’ Guidelines on good autopsy practice which were published in September 2002 include a section on neuropathology and epilepsy. In 2003, the College will also be producing evidence-based datasets, including a dataset covering epilepsy-related deaths. These will support improvements in autopsy practice, provide high quality information to improve clinical audit and ensure better management of epilepsy in patients. We will work with the Royal College of Pathologists to promote this work.
The JEC says:
This work of the Royal College is welcome, but the findings of the National Sentinel Audit indicated that existing guidance from the Royal College was not being followed. The evidence base of any data set will depend crucially on the quality of post mortems. There will be a need for a re-audit of epilepsy deaths to see whether the introduction of further guidance has effected any change.
b. The Department of Health is also aiming to improve post mortem practice through implementation of the Chief Medical Officer’s advice on the removal, retention and use of human organs and tissue (January 2001) and the current review of the law on human organs and tissue (Human Bodies, Human Choices, published July 2002). This work includes:
A clearer legal framework to support good clinical practice around post mortem examination and wider uses of human tissue.
Education and training for all health professionals on appropriate standards of practice.
Better education for NHS patients and the public on the value of post-mortems to public health, clinical audit and research.
Improved support and advice to families at the time of bereavement, including the development of the role of bereavement advisers within every NHS Trust.
The JEC says:
We welcome this and hope that discussions with the pathology section of the Department of Health will lead to initiatives to improve the experience of families experiencing SUDEP.
a. The Department of Health is contributing to the Coroners’ Review consultation document and has highlighted concerns around the investigation and certification of epilepsy deaths. The Review is due to report by April 2003, and is expected to recommend:
A more modern system for certifying and investigating deaths, including investigation of premature medical deaths such as from epilepsy.
Support for the bereaved which is at the heart of a reformed inquest process, with explicit service standards for the provision of information, advice on bereavement counselling, and the involvement of families in key aspects of any post mortem examination decisions
The JEC says:
Epilepsy Bereaved has submitted detailed comments to the Coroner’s Review and looks forward to the report in April.