Judith and Alix worked with Sands for over 25 years, helping to improve care and support for bereaved parents.
Alix first became involved in 1989 when Nancy Kohner invited her to work with her on the book When a baby dies (published in 1991).
Judith became involved with Sands in 1991. In those days the Helpline was run from the Sands office and she manned the Helpline phone one day a week.
When Nancy wrote the second edition of Miscarriage, stillbirth and Neonatal Death: guidelines for professionals, Judith and Alix contributed a chapter on cultural and religious aspects of caring for bereaved parents.
Judith and Alix were then asked to revise all the existing Sands leaflets for parents and to write several new leaflets on topics that had not yet been covered.
In 2005, Nancy was beginning the third edition of the Guidelines but sadly became too ill to complete it. Alix and Judith were invited to take over. The new edition was published in 2007, after which Judith was asked to become the Bereavement Care Manager. Alix and Judith continued to work with Sands until they retired in 2015.
It is difficult to pick out the contributions that we are most proud of. For both of us, researching and writing the much expanded third edition of the Guidelines and new versions of all the Sands support leaflets are the highlights, but we are also proud to have achieved major changes in some important health care policies and processes. These included:
- persuading NICE (the National Institute for Clinical Excellence) to change their guidance so that parents continue to have a choice about seeing and holding their babies after the birth.
- challenging HMRC (HM Revenue and Customs) to change their policy so that all parents with a Certificate of Stillbirth are eligible for maternity benefits, including maternity leave.
- working with the ICCM (Institute of Cemetery and Crematorium Managers) to change their guidelines for crematoria so that more parents can be offered their baby’s ashes after a cremation.
Judith also gave evidence to the Morton Hall Ashes Enquiry in Scotland, stressing the importance to parents of having ashes, however few, after their baby’s cremation.
- bringing together perinatal pathologists and staff from the HTA (Human Tissue Authority) to cooperate on developing an HTA-approved post mortem consent form for perinatal deaths which is as clear and respectful of parents’ feelings as we could make it.
- developed the Sands Post Mortem Pack, which includes the new post mortem form, a leaflet for parents on deciding whether to have a post mortem, and guidance for doctors, midwives, mortuary staff and hospital managers on supporting parents who are asked about a post mortem for their baby.
- carried out a national survey of NHS bereavement care for parents whose baby has died to help Trusts and Health Boards assess the quality of the care they give to parents who have a perinatal loss, and to provide a countrywide picture of standards of care.
We could not have achieved any of this without the support and encouragement of our Sands colleagues, including the then CEO Neal Long, and of the many Sands parents who generously shared their time and their stories.
Our hopes for the future are that the high rate of perinatal death that persists in the UK is widely recognised as a national scandal that requires action, so that fewer parents have to go through the devastating experience of the death of their baby. We sincerely hope that the Perinatal Mortality Review Tool (launched in January 2018) will help to ensure that lessons are learned and will lead to a substantial fall in the number of stillbirths and perinatal deaths in the UK.
Cheryl Titherly, Improving Bereavement Care Manager, said: “Judith and Alix were key volunteers and staff members. They were pivotal in the writing of the 3rd Edition of the Sands Guidelines for Professionals and setting up the IBC team among many other achievements on behalf of Sands. Their legacy for improving bereavement care continues across the UK.”
Judith and Alix have been nominated as part of 40 volunteers for #Sands40. Join them at Sands 40th Anniversary Conference on 17th November 2018 in Glasgow.
Sands is marking its 40th anniversary this year and we would like to say thank you for the incredible support and contribution that our dedicated volunteers make across the UK to support bereaved parents and anyone affected by the death of a baby.
We will be hosting an awards ceremony during the Sands 40th Anniversary Conference to celebrate the wide range of volunteering involvement in Sands and acknowledge 40 volunteers for their dedication and commitment.