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Continuing care

Aim to arrange ongoing contact with the family to keep them informed of what is happening and what will happen next. Ensure families feel well supported in managing this period of waiting, understand what is involved in the review and are offered referral to support organisations.

Families tell us that when they leave the hospital there is sometimes no care offered and if their baby did not go to the emergency department, there can be no central point of contact in the hospital for them to meet with or contact to ask questions.

What do we need to do?

Follow up meetings and contact

  • Explain that although routine health check or immunisation appointments have been cancelled, any that are computer generated, may already be in the process of being sent. Acknowledge that these may be distressing to receive and that any which do arrive can be returned
  • The key healthcare contact, identified before the family left the hospital, should reach
    out and ideally offer to meet face to face in addition to having scheduled phone calls.
  • When arranging updates for the family, either about their baby’s death or the support and care they have received:
    • give as much notice of meetings as possible, and an indication of what each meeting is about
    • allow plenty of time for families to ask questions and consider how to invite the family to prepare their questions in advance
    • having liaised with key professional partners (e.g. Procurator Fiscal), share results of investigations with families face to face rather than in the post or via email
    • ensure the family understand the information that is given to them and have access to professionals who can explain each part
    • offer to liaise with other agencies on the family’s behalf
    • offer information about organisations and services offering emotional and psychological support.
  • Explain that a SUDI review is for infants aged between 0 -24 months and that this may take place several months after the baby or infant has died. See SUDI Scotland Review.
  • Inform the family as appropriate of other child death review processes e.g. Perinatal Mortality Review (PMR), and your local internal processes for example the Morbidity and Mortality [M&M] meeting, Significant Adverse Event (SAE) review and significant case review [SCR].
  • Make sure the family know how they can give feedback on the care and support they have received to hospitals and other care services and advise they could share their stories via Care Opinion.

Support in the community

  • Know the family’s circumstances and the stage of the investigation before you make any contact. Offer the family a telephone call and/or an appointment when they are back in the community.
  • GPs should consider writing a letter expressing sorrow.
  • Provide details of support services, locally and nationally, at every available contact. There can often be long periods where there is no information, and families can find these quiet times the most difficult to get through.
  • Encourage families to seek support from their health visitor or primary midwife if they are particularly struggling with issues such as sleep or re-living the time when their baby died.
  • Be conscious of additional needs for the whole family and that that the death may trigger other issues including housing, schooling, employment and financial problems. Be prepared to help families get appropriate advice.
  • Depending on the previous involvement with the family, and especially if there are other pre-school children, tailor ongoing health visiting care.
  • Do not assume multi-agency communication is happening (although it is an essential part of the process) or that everyone, including you, has the most up- to-date information.
  • Refer families to specialist counselling and bereavement support at any time. The process following the sudden death of a baby is often so traumatic that families may not seek specialist support for several weeks or months, once the contact from professionals has become less frequent.
  • Be mindful that counselling therapy/ trauma therapy offered by support services may be more quickly available than NHS services.
  • Consider NICE guidance on antenatal and postnatal mental health and SIGN guidance on perinatal mood disorders.
Our health visitor kept making visits which was very much welcome and the local doctor made a house visit as well which was appreciated. The one thing I will say though is that when you are been investigated and feel like you are the one to blame for the death of your child, any form of professional makes you worry that they are spying on you and are just waiting for you to slip up so they can take the rest of your life away as well. Everyone I came into contact with was lovely but they came loaded with questions and that made me feel very unsafe.

How will we know we have achieved our aim?

Families will tell us that they knew who to contact to ask questions or for guidance on what was happening, felt well supported in managing this period of waiting and were offered referral to support organisations at an appropriate time. They will say they understood what the review into their baby’s death involved.

Staff will tell us they feel confident and competent to identify and liaise with the key person supporting the family and when referring families to support organisations. They will say they feel fully able to explain the review meeting and sensitively invite families to contribute so that the families experience is fed into the meeting via a professional attending.

Go to SUDI Review

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