New model of neonatal care: new model of neonatal care for the smallest and sickest babies

Closed 8 Jul 2024

Opened 21 Jun 2024

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View submitted responses where consent has been given to publish the response.

Overview

This survey seeks your views on the Scottish Government’s planned changes to how neonatal services are delivered; described as the “New Model of Neonatal Care”

What is Happening?

Every year a small number of babies are born in Scotland who need specialist hospital care - called neonatal care - to help them survive and thrive.  The way we provide neonatal care in Scotland is changing to improve care for our smallest and sickest babies. 

These changes were recommended by an expert group, which undertook a review to recommend changes across maternity and neonatal services, to improve how we care for pregnant women and babies.

This expert review resulted in the publication of ‘The Best Start: Five-Year Forward Plan for Maternity and Neonatal Care’, published in 2017, which is Scotland’s plan for improving maternity and neonatal services in Scotland. The plan highlights the importance of a truly family-centred, safe, and compassionate approach which recognises everyone’s unique circumstances and preferences. There are 76 recommendations in the Best Start which the Scottish Government and partners are committed to implementing.

More Information

Work on the New Model of Neonatal Care relates to two recommendations:

Recommendation 45 of the Best Start states that: “The new model of neonatal services should be redesigned to accommodate the current levels of demand, with a smaller number of intensive care neonatal units, supported by local neonatal and special care units. Formal pathways should be developed between these units to ensure that clear agreements are in place to treat the highest risk preterm babies and the sickest term babies in need of complex care in fewer centres, while returning babies to their local area as soon as clinically appropriate. Three to five neonatal intensive care units should be developed, supported by 10 to 12 local neonatal and special care units.”

Recommendation 46 of the Best Start states that: “Excellent communication processes should be developed between neonatal units and with parents to ensure a full understanding of the care pathways for babies. Consistent, standardised information will also be developed to ensure all parents are aware of the options for their baby, in particular for those parents whose babies might have all, or part, of their care out with their local unit.”

Why is this happening?

The expert group reviewed evidence which showed that the smallest and sickest babies would have a better chance of surviving in a Neonatal Unit which cared for a lot of babies with similar needs. The group recommended that we should provide intensive care for the smallest and sickest babies in three hospitals in Glasgow, Edinburgh and Aberdeen. They also said that parents should be helped to be with their baby while they are in hospital as much as possible. This help includes money to cover the cost of travel and meals.

The Scottish Government has agreed with the expert group and is working with NHS Boards to make the changes recommended by the experts.

As part of this work, we would like to hear from parents and families about your experience, particularly if you have had a baby cared for in a neonatal unit, to ensure that we make these changes in the right way.  Thank you in advance for taking the time to help us understand your experience and to help us improve things for parents in the future.

The New Model of Neonatal Care

The Minister for Public Health and Women’s Health announced on 25 July 2023, the new model of neonatal care for Scotland - this means that care for babies born at less than 27 weeks, lighter than 800 grams or who need specialist complex care, will be provided by Neonatal Intensive Care Units (NICU) at Aberdeen Maternity Unit, Edinburgh Royal Infirmary and Queen Elizabeth University Hospital.

Neonatal units in Ninewells, Dundee, Princess Royal Maternity,Glasgow, Univeristy Hospital Wishaw, Victoria Hospital, Kirkcaldy and University Hospital Crosshouse, Kilmarnock will continue as local neonatal units (LNU) to provide neonatal care for their populations.  These local neonatal units across Scotland will continue to offer care to babies who need it, including a level of neonatal intensive care.

More Information

The process of determining which units should be providing Neonatal Intensive Care was undertaken by an expert group, including clinical leads and service user representatives, and their recommendations that Queen Elizabeth University Hospital, Edinburgh Royal Infirmary and Aberdeen Maternity Unit should be designated as the three Neonatal Intensive Care Units for Scotland, published within the Options appraisal report, were accepted by Scottish Ministers.

In addition, the Framework for Practice ‘Criteria to Define Levels of Neonatal Care including Repatriation within NHS Scotland’ was published on the same day as the announcement and describes the new model of care.

The Best Start aims to keep mums and babies together as much as possible. Therefore, if it is identified during the pregnancy that there is a high risk of the baby (or babies, in multiple pregnancies) needing highly specialist intensive care after birth then all antenatal care will be planned with the input of a specialist maternity team, and with an expectation that the woman will be admitted to a maternity unit in a hospital with a NICU on site when it is time to deliver.

Under the new model of care mothers in suspected extreme pre-term labour will be transferred before they give birth (in-utero) to maternity units in the hospitals that have neonatal intensive care units. 

It is recognised that it will not always be possible to transfer mothers before they give birth, and in those cases our specialist neonatal transfer service, ScotSTAR will transfer those babies in specialist ambulances equipped to care for neonates (this has been established practice for many years). Babies receiving care in one of the three intensive care units will be transferred back (repatriated) to their local neonatal unit for ongoing care as soon as possible.

How will families be supported?

The Young Patients Family Fund provides reimbursement of travel, food and accommodation costs for parents with babies in neonatal care to ensure those parents can be with their babies.  In addition, NHS Board accommodation is available to parents/carers and this should be accessed in the first instance.

The Neonatal Care: Information leaflet for women in Scotland provides information for families on the new model of care, different levels of care and where care is provided, and what to expect in the event of the need to transfer mother and/or baby.

Useful information about responding to this survey

As you complete your response, each page will provide the option to 'Save and come back later' at the bottom. This means you can save your progress and return to the survey at any time before it closes. If you don't use this feature and leave the survey midway through, your response will be lost.

Once you have submitted your response, you can enter your email address to get a pdf copy of your answers sent to you.

On the 'About You' page at the end of this survey, organisations will have the opportunity to tell us more about their work and/or how their response was informed.

After the survey has closed there will be a few months delay before any responses are published. This is because we must check any responses to be published abide by our Terms of Use.

An analysis report will usually be published some months after the survey has closed. This report will summarise the findings based on all responses submitted. It will be published on the Scottish Government website and you may be notified about it if you choose to share your email address with us. You can also join our consulation mailing list where we regularly list newly published analysis reports (as well as new consultations).  In addition, the Scottish Government will hold focus groups for those who wish to attend to cover specific areas raised in the responses.

Why your views matter

As part of the next phase, Scottish Government will be consulting with families on implementation of the proposals, so that we can take account of your views when the pathways and processes for the new model of care are designed.

We are now seeking your views and any concerns or points you wish to raise on the new model of neonatal care. We think this is particularly relevant if:

  • you or someone you know have had experience of neonatal care
  • you/or your family may use neonatal services in the future
  • you are a member of a patient representative group or Maternity Voices Partnership

This list is not exhaustive. We welcome all responses from all interested parties. The Scottish Government will analyse all responses received from this survey, and will provide a summary to those who have consented to receive further communications about it. In addition, the Scottish Government will hold focus groups for those who wish to attend to cover specific issues raised in the responses.

What happens next

After the survey has closed there will be a few months delay before any responses are published. This is because we must check any responses to be published abide by our Terms of Use.

An analysis report will usually be published some months after the survey has closed. This report will summarise the findings based on all responses submitted. It will be published on the Scottish Government website and you may be notified about it if you choose to share your email address with us. In addition, the Scottish Government will hold focus groups for those who wish to attend to cover specific issues raised in the responses.

You can also join our consultation mailing list where we regularly list newly published analysis reports (as well as new consultations).

Interests

  • Children and Families
  • Health and Social Care
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