1. Zoe Clark-Coates, Mariposa Trust
Pregnancy Loss Review
Presentation by
Zoe Clark-Coates, Mariposa Trust
&
Samantha Collinge, University Hospital Trust for Coventry and Warwickshire

2. Background
Registering babies born without signs of life before 24 weeks gestation
The Births and Deaths Registration Act 1953, as amended, provides for the registration of babies born dead after 24 weeks’ gestation, which is the legal age of viability. Parents of babies who are stillborn after 24 weeks gestation receive a medical certificate certifying the stillbirth and, upon registration, can register the baby's name and receive a certificate of registration of stillbirth.
Parliament supported a change to the stillbirth definition from “after 28 weeks” to “after 24 weeks” in 1992, following a clear consensus from the medical profession at that time that the age at which a foetus should be considered viable should be changed from 28 to 24 weeks. Medical opinion does not currently support reducing the age of viability below 24 weeks of gestation.
The Department of Health and Social Care is aware that some parents find it very distressing that they may not register the birth of a baby born before 24 weeks. However, it is important to recognise there may also be parents distressed at the possibility of having to do so. When a baby is born dead before 24 weeks gestation, hospitals may issue a local certificate to commemorate the baby's birth.
On 2 February 2018, Health and Social Care Secretary of State Jeremy Hunt announced the Government’s intention to conduct a review of whether the law should be changed to allow registration of late miscarriage, and more broadly on what might be done to improve the care and support for parents who experience pregnancy loss before 24 weeks gestation.

3. Scope of the Pregnancy Loss Review
The Terms of Reference state the Pregnancy Loss Review will consider:
The impact on families of the current threshold of 24 weeks gestation for formally registering a late miscarriage.
Whether it would, on balance, be beneficial to amend existing primary legislation to allow parents to register a late miscarriage.
Options to improve NHS gynaecology and maternity care practice for parents who experience a miscarriage and other causes of baby loss.
Abortion Law: The review will not consider any changes to abortion law.
Devolution: While health is devolved, registration systems apply to both England and Wales and the Review will need to be mindful of any impact on Wales as well as, more broadly, cross-border issues (for example, when a woman from Wales delivers or experiences a pregnancy loss in England and vv.)
National Bereavement Care Pathway:
In 2016, the Department of Health provided the start-up funding for Sands to work with other baby loss charities and Royal Colleges to produce a National Bereavement Care Pathway to reduce the variation in the quality of bereavement care provided by the NHS.
The pathway will cover a range of circumstances of a baby loss including: miscarriage, stillbirth and termination of pregnancy for medical reasons and neonatal death.

4. Pregnancy Loss Review High-Level Plan
Apr
May
Jun
Jul
Aug
Sep
Oct
Pre-24 week registration
Desk Research
Discussions with experts
Further testing and evaluation of options
Initial economic impact assessment & modelling options
Report drafting and editing
Further testing with key partners/interested parties and editing
Improving care
Desk Research
Further testing and evaluation of options
Further testing with key partners/interested parties and editing
Discussions with experts
Gap Analysis of National Bereavement Care Pathway
Report drafting and editing
Consultation and Comms
Consultation event – parents (Birmingham)
Consultation event – charities (Coventry)
Consultation event – charities (Birmingham)
Consultation event – parents (London)
Consultation event – parents (Manchester)
Governance
Reporting to ministers
Advisory Group
Advisory Group
Advisory Group
Advisory Group
Advisory Group – Sign Off
Preliminary advice to ministers on registration
Draft report to ministers
Final report to ministers
Baby Loss Awareness Week (Oct 9 -15)
Today

5. How the review is carrying out its work
Leadership: Co-Leads Zoe Clark-Coates and Samantha Collinge lead the review, with support from DHSC officials.
Governance: An Advisory Panel comprising representatives of key stakeholder groups meets regularly to review progress and provide feedback and support for the review.
Methods:
Consultation meetings and focus groups with individuals with lived experience of pre-24 weeks gestation pregnancy
Desk research on key evidence
Interviews with key stakeholders including officials, registrars, clinicians, academics and international experts
Survey of bereavement midwifes
Outputs:
The review will prepare a report that identifies priorities and makes detailed recommendations for improvement

6. Questions?