Clea Harmer 15th June 2018 Contents 1. Parents

Clea Harmer 15th June 2018 Contents 1. Parents

Clea Harmer 15th June 2018 Contents 1. Parents and communication at the heart of the Pathway 2. Updates Pilot sites Evaluation 3. Challenges 4. Vision going forward Vision and aim of

National Bereavement Care Pathway To ensure that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care Parents at the heart of the NBCP Hearing the parents voice Parents told us 3 things were important for excellent bereavement care: 1. Communication 2. Continuity and consistency in care

3. Parent-led family involvement Communication: finding the right words is hard Everyone needs to find the right words, healthcare professionals included. How prepared do you feel when it comes to communicating with bereaved parents? (500) 1% 12%

Completely prepared 27% 39% Very prepared Prepared Somewhat prepared

15% 6% Not very prepared Not prepared at all Baseline evaluation of NBCP (April 2018) showed 52% felt less than prepared Communication: finding the right words is hard

How prepared do you feel when it comes to communicating with bereaved parents? (% feeling less than prepared) All (500) Not midwives (183) Midwives (317) Grades 6-8 (352) Grades 3-5 (80)

52% 46% 56% 51% 73% Baseline evaluation of NBCP (April 2018) showed 73% of Midwives grades 3 to 5 felt less than prepared

Communication: finding the right words is hard Update on Wave 1: launched October 2017 We talk to Gynae a lot more now Feedback from the 11 pilot sites It has raised the profile of bereavement care and improved relationships with other departments

High quality Some teamsbereavement difficult to when facing careengage with, for example butA&E important high demanddoesnt make to be seen to do money the right thing Sometimes difficult to engage senior staff, though often the

reputational benefits resonated Challenging to incorporate into existing roles it requires a team of We have asked for people to lead from different departments each area to appoint a I was already at capacity bereavement link

Partnership: Who do we need to engage with? (not an exhaustive list!) Pathologists A&E staff Cemetery staff I wish someone had given us more time to talk about the benefits of

seeing the baby and spending time with him. Of inviting the other kids to come and meet him. Parents dont need protecting; they need the chance to be parents, provide their child dignity and create memories.

For me the simple things make a huge difference. Being listened to. Eye contact and someone sitting beside me communicating they have time for me. I found it really distressing to have to explain over and over again to different members of staff that my

baby had died. Wave 1 baseline evaluation: key findings from healthcare professionals 1. Where in post, bereavement midwives/leads are making a significant and positive difference to bereavement care. 2. Bereavement care is inconsistent with parents experiencing miscarriage or TOPFA receiving less good care, as with parents in A&E or on Gynae Wards 3. Staff on lower grades feel less able to communicate, less able to discuss bad news, less supported to deliver good quality bereavement care

Further Updates Wave 2: launched April 2018 Further 22 sites launched including those with leads who are Health Visitors, GPs, and from neonatal units DHSC Funding In April 2018 Minister for Health announced funding of national roll-out APPG for Baby Loss Continued support from APPG Scotland o Funding from Scottish Government for national roll-out in Scotland

o Develop pathway for Scotland o Initial workshop on 25th June o Launch of pilot autumn 2018 Parent to parent post mortem film https://player.vimeo.com/video/272820256 https://sands-lothians.org.uk/post-mortem-animation/ Challenges From current sites o Working across teams / engaging all departments

o Senior management o Capacity/resources o Lack of bereavement care facilities Challenges Generally o Too many QI initiatives? o Embedding change (as with PMRT) o Pace that is needed Vision going forward National roll-out

o Move from nice to have to national quality improvement initiative o Remove postcode lottery o From autumn 2018 o Use learning from Waves 1 and 2 to inform national roll-out as 3rd action research cycle o Use year to move from driven model to guided model Vision going forward Embedding the pathway - NBCP Standards o Outline requirements against which standards of bereavement care are

assessed o Standards embedded in pathway, but also in other guidance and frameworks building on work already undertaken with CQC and PMRT o All national guidance and frameworks supporting achievement of same core standards Vision going forward Training o Bereavement care training already exists ensuring this is evidence-based and readily available o Bereavement Lead knows what needs to happen needs support in making this happen

o Multi-disciplinary working putting the parent at the heart of the process - a paradigm shift? o Embedding and maintaining QI initiatives Vision going forward Global vision keeping bereavement care on the agenda Ensuring NBCP is linked to global work to improve bereavement care Core Principles of Bereavement Care o Provide comprehensive, ongoing training in the care of bereaved women and families to the whole healthcare team.

o Provide respectful maternity care to bereaved women, their families and their babies. o Make every effort to investigate and provide an explanation to women and families for the loss of their baby. o Offer appropriate information and postnatal care to address physical and psychological needs, including a point of contact for ongoing support. o Enable women and families to make Informed and supported decisions about birth options. o Acknowledge the breadth and depth of grief associated with stillbirth and offer appropriate emotional support. o Provide information for women and their families about future pregnancy planning. o Reduce stigma following bereavement by increasing awareness of stillbirth within communities. D.Siassakos; ISA; University of Bristol; UCL

With thanks to all those involved Advisory Group of stakeholders Parents & families All Party Parliamentary Group on Baby Loss (APPG) Health and social care professionals Royal colleges Healthcare Professionals bodiesprofessionals across a range of professions Academics

Faith leaders Third sector organisations Core Group Project Board Training Sub-Group Evaluation Sub-Group Parent Advisory Group NBCP supported by What you are doing literally saves lives .

. even when a baby dies, good bereavement care saves parents lives

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