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Support in the community

Aim to keep ongoing clinical and emotional care of the family at the centre during and following handover from secondary to primary care and ensure families have the emotional support they need.

Families tell us they get lost between services and their expectations about follow on appointments, review and further support are not met.

What do we need to do?

  • On hearing of the neonatal death:
    • the GP should send a letter expressing sorrow to the family and offer an appointment, preferably a home visit
    • if the mother is still receiving midwifery care, the primary midwife should arrange a home visit as soon as possible.
  • Check the family has all the information on the different types of emotional and bereavement support available and how to make contact. Continue to offer to help them make contact if they wish.
  • Check the family knows who their primary healthcare team is and who they should contact.
  • Check the family knows when the clinical follow up appointments are and if they need any help to consider questions they want to ask before their appointment. Remind them what the follow up does and does not cover, and who can attend. Offer to attend the appointment with them.
  • Offer referral for specialist psychological support if there are signs of PTSD or clinical depression and, if appropriate, for mental health assessment for the family including siblings.
  • Consider NICE guidance QS115 on antenatal/ postnatal mental health and SIGN guidance 127 on perinatal mood disorders.

Perinatal Mortality Review

  • Confirm the family’s wishes about being involved in the perinatal mortality review process, and when and how they can contribute. Check whether and how they want to be informed of the outcomes of the review of their baby’s death.
  • Prompt the family to think about their questions and comments beforehand. A form to help
    the family do this is available from the Parent Engagement Materials on the Perinatal Mortality Review Tool (PMRT) website.
  • Ensure the review looks at the family’s clinical and emotional care, and covers the whole pathway of care, with input from community healthcare professionals.
  • Meet with the family to consider their clinical and emotional care, discuss any results of investigations, explain the Perinatal Mortality Review report and answer their questions. Wherever possible, this meeting should be with the senior paediatrician who has provided continuity of care.
  • Continue to check a family has information about support services and how to contact them and offer to help with this.
  • Carefully share ongoing information between the GP and health visitor (and primary midwife if involved), with the family’s key contact acting as coordinator.
  • Ensure primary care staff are aware of the timing of and outcomes from clinical follow up and the Perinatal Mortality Review.
  • Arrange a final handover from the paediatric team to primary care team when appropriate and make sure the family know whom to contact from this point onwards.
Community care was a lot better than the hospital. My community midwife had volunteered with a support organisation so knew what to say, there’s not a script and asked “Have you phoned?” She followed up a few times.
The minute I stepped out of the hospital that was me. I had a few visits. She (the midwife) was in more shock than me, I had seen her the day before. When visiting me at home, she said technically I shouldn’t be coming any more, but I can come if you want. My follow up at the GP 6 weeks later, ‘What are you doing here?’

How will we know we have achieved our aim?

Families will tell us they knew who had responsibility for their bereavement care after they left hospital and felt confident about the support available to them. They will say they felt well prepared for the Perinatal Mortality Review, and that the investigations and the reports were sensitively explained to them.

Staff will say they feel confident and competent coordinating care and support, referring families for support, sharing information between services and engaging with parents about the review.

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