The Sands perinatal post mortem consent package
Sands, the stillbirth and neonatal death charity, have developed model consent forms, information and guidance for health professionals seeking consent for post mortems on babies who have died before, during or shortly after birth. The aim is to make it easier for health professionals and parents to discuss post mortems and will ensure that parents can make informed choices.
This material has been developed by Sands in consultation with the HTA and health professionals across the United Kingdom – including obstetricians, neonatologists, perinatal and paediatric pathologists, midwives, neonatal nurses, anatomical pathology technologists, clinical geneticists and mortuary managers, as well as with parents. Funding support was provided by the Department of Health & Social Care.
Forms
The model consent forms are not prescriptive owing to local variations in practice and may be adapted as necessary for local needs, provided they comply with the Human Tissue Act 2004 and the HTA’s codes of practice. Consent forms are only one part of the consent process and should be completed after appropriate discussion and explanation.
At present, these forms can only be used by hospitals and trusts in England. In Wales, health boards should used the standardised consent forms agreed by NHS Wales. In Northern Ireland, HSS Trusts and other relevant organisations should use the standardised consent forms agreed with the Department of Health Northern Ireland.
Separate consideration is being given in Scotland to a similar form which complies with the Human Tissue (Scotland) Act 2006.
Sands guide for consent takers: seeking consent for the post mortem examination of a baby
This guide is written for all staff across the UK seeking consent or authorisation for a post mortem. It will be particularly useful for those who are new to seeking consent and for those who wish to review their practice. (This guide is not intended to replace training for consent takers, required by our Codes of Practice, but may be used as the basis for training sessions and materials.)
Please note that the guide is intended for health care staff. If you are a bereaved parent, please go to the Sands website.
- Sands Guide for consent takers (PDF)
- Compiling local information for post mortem consent takers (Word) lists the questions that cover local arrangements that consent taker needs to understand before discussing consent with parents. A printed copy of the completed document should be kept in a perinatal post mortem file on each ward or unit where perinatal post mortems may be requested, along with other key reference documents.
Sands booklet for parents
The Sands booklet Deciding about a post mortem examination: Information for parents is suitable for all parents across the UK whose baby dies before, during and after birth, wherever they are cared for.
Wherever possible, the booklet should be given to parents when the option of a post mortem is first mentioned, before a detailed discussion about consent.
Unless it is unavoidable, parents should always be offered a printed copy. Printed copies are available post and packaging only to all UK hospitals. They can be ordered from the Sands shop. To order by phone, please call: 0845 6520 445.
Sands bereavement support app
The Sands bereavement support app aims to help bereaved parents and families to find the right information and support at the right time. The app can also be used by healthcare professionals, who would like to know how best to support bereaved parents and their families. The app contains links to the Sands website with details of local support groups across the UK, ways to share your story, Sands bereavement care resources for professionals; as well as details of their work in research and prevention. More information on this can be found on the Sands website.
The Sands Bereavement Support Book is available online.