Written evidence submitted by Bliss - the charity for the newborn (FTDOO48)

The First 1000 Days: a renewed focus

Written evidence submitted by Bliss

For more information, please contact Maya Parkin Senior Public Affairs and Policy Officer at mayaparkin@bliss.org.uk
 

Executive summary

We welcome the opportunity to contribute to the First 1000 Days consultation. Our submission focuses on the unique and often overlooked needs of babies who are born premature or sick and require neonatal care. These babies are at increased risk of poor outcomes throughout their early years, and yet neonatal services are frequently excluded from early childhood strategies. Our response outlines key areas where targeted action is urgently needed to ensure all babies have the best start in life.

• Preterm births are the single biggest cause of neonatal mortality in the UK, and a leading contributor to deaths in childhood, but little progress has been made to reduce the number of preterm births
• There are significant disparities in neonatal outcomes based on ethnicity and deprivation. These must be addressed through improved data, targeted interventions, and community outreach
• National tools exist to improve care for preterm babies, but variation in implementation remains high. Greater compliance is needed to ensure all families benefit
• Neonatal units do not meet staffing standards, particularly in nursing and Allied Health Professionals, Psychologists and Pharmacists. Urgent investment is required to deliver safe, high-quality care
• Developmental follow-up at ages two and four is vital for identifying additional needs. Current provision is patchy and under-resourced, delaying access to support
• Babies leaving neonatal care often fall through the gaps in outreach services and community care which is essential for continuity of care
• Many children born preterm are re-admitted to paediatric intensive care. Better early support could prevent some of these admissions
• Neonatal care should be a core part of all early childhood strategies and funding decisions.

We urge the inquiry to fully recognise the role of neonatal care in shaping children’s outcomes and to prioritise this within recommendations for the first 1000 days.

1                        Introduction to Bliss and our reason for submission

2                        Bliss champions the right of every baby born premature or sick to excellent neonatal care, experiences and outcomes. We achieve this by improving care, giving voice to babies, and supporting parents to be partners in care.

3                        Bliss welcomes the work of this inquiry as its scope is highly relevant to our work as, for over 90,000 babies every year, their first 1000 days of life includes neonatal care. Neonatal care is the type of hospital care that a baby receives if they are born unwell and these babies often face significant challenges during this critical developmental window. Babies may be admitted to neonatal care shortly after birth because they have been born prematurely (before 37 weeks of pregnancy), or because they are born at full term but with a condition that requires hospital care (such as an infection or genetic condition). As a result, they spend their first few days, weeks or months of life in an incubator or cot. They are frequently separated from the comfort of their parents, who will usually have to leave their baby repeatedly - night after night - during their stay, as most hospitals are not able to routinely provide parents with a place to be with their baby overnight.

4                        While the care that they receive is often lifesaving, this is a traumatic start to life, with babies experiencing painful and uncomfortable procedures routinely and – for premature babies in particular – exposed to light, sounds and environment they are not developmentally ready to experience. Sadly, some babies die before they are discharged

5                        This inquiry provides significant opportunity to ensure that the family hubs programme and early years services are more intentional in their support for children who needed neonatal care in their first 1000 days of life.

6                        Q1) What progress has been made since the previous Committee’s 2019 First 1000 days of life report in terms of outcomes for children and young people in delivering integrated early years through Family Hubs?

7                        Progress from 2019 report

8                        The 2019 report recommended the Government develop, as part of a national strategy, ambitious high-level goals to reduce infant mortality, with a focus on reducing child inequalities and their impact[1]. After previous improvements until 2020, neonatal mortality rates (deaths within first 28 days of life) have plateaued, with a small recent increase (see table 1 below)[2].

9                        1 in 13 babies are born prematurely in the UK every year[3]. Since 2019, evidence has emerged showing that preterm birth is the single biggest cause of neonatal mortality in the UK, and a leading contributor to deaths in childhood[4], but little progress has been made to reduce the number of preterm births. Additionally, the National Child Mortality Database found that 46 per cent of childhood deaths below the age of ten were caused by preterm birth and it is thus attributed to be the leading cause of child death up to the age of 18[5].

10                    These findings underline the importance of long-term monitoring and support for children born preterm. They also emphasise the need for neonatal services and policy to extend beyond the neonatal period, considering the sustained health risks in the first 1000 days and beyond faced by these children.

11                    Table 1: Data from Sands and Tommy’s Policy Unit (2024)

12                    There are stark inequalities in neonatal mortality when disaggregated by ethnicity and social deprivation. Data from Sands and Tommy’s Policy Unit highlights that in 2021, the stillbirth and neonatal mortality rate among Black babies was approximately double the UK rate and the rate among White babies. Furthermore, the neonatal mortality rate among the most deprived quintile was two-thirds higher than the rate among the least deprived[6]. While a long-term strategy is essential, there are also immediate steps that can and should be taken to tackle the factors driving inequality. These include strengthening the collection of data on social risk factors and ensuring local equity plans sufficiently include neonatal input and are properly supported and consistently implemented.

13                    The most recent National Neonatal Audit Programme report found that only 79.6 per cent of babies born at less than 27 weeks’ were born in a hospital with a neonatal intensive care unit[7]. The same report highlighted significant variation in different parts of the optimal perinatal care pathway. We are not working from a blank page when it comes to solutions to reducing mortality and optimising care for babies born preterm, or who are born extremely unwell.

14                    It is important that:

• Extremely preterm babies are delivered in a hospital with a level three neonatal unit[8]
• Neonatal services are configured to support optimal care[9]
• Neonatal services are staffed in line with agreed standards, particularly in compliance with one-to-one nursing ratios[10]
• Care is optimised antenatally, during labour and immediately post-birth to improve outcomes for babies born preterm[11].

15                   Greater integration and multi-agency working

16                    Local Maternity and Neonatal Systems (LMNSs) are the maternity and neonatal arm of the Integrated Care systems. LMNSs bring together purchasing bodies, hospital trusts and service users to provide and improve maternity and neonatal care.

17                    Regarding progress towards integration and multi-agency working, there has been closer collaboration between Neonatal Operational Delivery Networks (ODNs) and LMNSs, with a growing recognition of the importance of neonatal within the latter structure. This aligns with the inquiry’s focus on integrated care and early years outcomes. However, progress remains inconsistent across regions, and neonatal care often continues to receive less emphasis than maternity care. There have been continued challenges with ensuring effective working between ODNs and LMNSs, with some regions working together much more closely than others, partly driven by the boundaries of these different regional structures not being coterminous, and the need for the ODNs to often work with a number of different LMNSs.

18                    This inquiry is gathering evidence at a time when the future of how care is going to be delivered and managed is going through a period of significant change. Bliss believes neonatal ODNs, which have existed since 2004 and formally commissioned by NHSE since 2013, are integral for ensuring the coordination of safe and effective neonatal services[12]. They are focused on ensuring high-quality neonatal care, improving outcomes for babies and families, and keeping mother and baby together while neonatal care is needed.

19                   Q2) What should the Government prioritise in upcoming funding allocations for early years services?

20                    It is imperative that the Government prioritises funding for continued development of neonatal services including neonatal outreach to support the transition to care delivery at home during the first 1000 days. Funding neonatal outreach services is particularly relevant for this call for evidence as “Integrated Care Boards aim to boost out-of-hospital care and dissolve the historic divide between primary and community services” (p10)[13]. Despite numerous national recommendations from the National Critical Care Review and other national bodies, there are currently no formalised commissioning pathways for neonatal outreach services.

21                    Additionally, the provision of, and access to, neonatal outreach services are patchy and inconsistent in terms of the services they deliver to babies and families upon discharge from hospital. In April 2025, the British Association of Perinatal Medicine (BAPM) produced the Neonatal Outreach Service – A BAPM Framework for Practice, marking the first time that outreach services have been defined, setting out a ‘’future vision of a supportive pathway for babies transitioning from the hospital to home environment’’ and that ‘’neonatal outreach…should not be seen as a separate entity but as part of the continuum of neonatal care delivered across the country’’.

22                    When neonatal services utilise a model of Family Integrated Care, babies have better short and long-term outcomes[14]. Effective neonatal outreach services support Family Integrated Care by empowering parents to be confident primary caregivers during and after the transition from hospital to home, and facilitate greater coordination of neonatal outreach teams with universal services such as health visiting, midwifery and General Practice. For example, neonatal outreach services assist parents in “recognising and responding to baby’s feeding cues [which] is an essential skill for parents in learning how to support their baby’s feeding development and ongoing progress with eating and drinking in the early years” (p52)[15].

23                    In light of the recommendations highlighted above, resources to develop neonatal outreach would enable continued support to a vulnerable population of babies, while also enabling greater integration and awareness of neonatal care among community and primary care settings throughout the entirety of the first 1000 days period.

24                    Funding allocation for early years should also include upskilling universal service providers such as health visitors and General Practitioners so that they have enhanced knowledge and skills in the care of babies and families who have experienced neonatal care. In the Government’s Plan for Change, it laid out a commitment to strengthen health visiting services[16]. This will enable the needs of babies born premature or sick and their families to be better met.

25                   Q4) What are the key barriers to delivering high-quality early years services, particularly in Family Hubs and through neonatal and paediatric services, and how can they be addressed?

26                    Neonatal admission is not a rare event, but current early years services are often ill-equipped to support the needs of babies and children born needing neonatal care as they grow. Poor coordination of services and compliance with recommended developmental follow-up means opportunities to support children, and their families, are being missed.

27                    It is important to understand that for some children, their childhood will continue to be affected by the circumstances of their birth – and services need to be equipped with this understanding too. Research looking into the characteristics of children admitted to neonatal units and paediatric intensive care units (PICU) before the age of two years found that approximately half of all children admitted to PICU under the age of two years (born in the same window) had previously been cared for in a neonatal unit[17]. This means that the small proportion of children needing neonatal care subsequently requiring paediatric intensive care account for a large proportion of the total paediatric intensive care population. Furthermore, a study showed that children born preterm were over-represented in the long-stay paediatric intensive care population compared to the national preterm birth rate, which has major implications for research into child morbidity[18]. Lack of developmental follow-up of children born preterm.

28                    Developmental follow-up, both at two and four years, is crucial for ensuring children have the best long-term outcomes through access to early intervention services as soon as possible. Babies born preterm at greater risk of developmental issues and disability, and that the likelihood increases the earlier a gestation a baby is born. For example, one study found that babies born at 32 to 33 weeks (very preterm) were over 14 times more likely to develop cerebral palsy compared to babies born at full term[19]. Follow-up is vital for early identification of developmental problems and enabling early intervention from specialist services[20].

29                    The National Institute for Health and Care Excellence (NICE) NG72 provides a detailed guideline for the developmental follow-up of children and young people born preterm (2017). This guidance recommends:

• Providing enhanced developmental support and surveillance by a multidisciplinary team up to 2 years (corrected age) for children born preterm who are at increased risk of developmental problems or disorders (recommendation 1.3.1)
• Providing a face-to-face developmental assessment at 4 years (uncorrected age) for all children born before 28 weeks’ gestation (recommendation 1.3.7)[21].

30                    The National Neonatal Audit Programme reports data on whether babies born between 22 and 29 weeks’ gestational age receive a medical follow-up at two years corrected age, as recommended by NICE. In 2019, 70.8 per cent of babies born between 22 and 29 weeks’ gestational age received medical follow-up at two years corrected age and in 2023, this has increased to 77 per cent[22]. This highlights that although there has been progress, poor compliance remains with around one quarter of babies still not receiving this vital follow-up.

31                    Moreover, oral evidence provided to the House of Lords Preterm Birth Inquiry stated that only 6.7 per cent of neonatal services offered the four-year assessment for babies born extremely preterm[23]. While NICE recommends that community paediatric services undertake these reviews, these are not being routinely undertaken and there is a lack of clarity regarding who is responsible for commissioning and delivering these checks. As such, most children who should be receiving these assessments are not – despite their increased need[24].

32                    For children who were born needing neonatal care who do not meet the criteria for 2- year and/or 4-year follow up, their ongoing opportunities for continued monitoring for development will come from universal health visiting services. However, At Bliss, we hear all too often that these services are ill-equipped to provide sufficient support and lack the knowledge they need to understand how neonatal admission and prematurity may continue to impact a child as they grow. We hear that parents are educating the professionals who are supposed to be providing support to them as early-years services do not understand how neonatal admission may affect children as they grow, or the support they may need. These experiences were also strongly echoed in evidence given at the recent Preterm Birth inquiry, which subsequently recommended that:

33                    ‘’NHS England should work with training providers to embed opportunities to develop specialist knowledge of the needs of preterm babies and their families into health visitor training and continuous professional development, with protected training time’’ (p57-58)[25].

34                    High-quality early years services, and paediatric community services, should ensure that children discharged from neonatal units – especially those born preterm – get structured, long-term follow-up. This is vital for proactively monitoring health and developmental issues that may worsen if left unresolved.

35                   Lack of coordination between neonatal and paediatric services, as well as neonatal and community health services

36                    Babies born needing neonatal care are unlikely to have contact with community health services until discharge. As outlined above, and these universal service providers, i.e. General Practitioners and Health Visitors, are not always well trained in working with these babies. For example, particularly for preterm babies, universal service professionals may not understand the importance of corrected age, babies weight centiles and where to get advice on medication. The British Association of Perinatal Medicine’s Neonatal Outreach Framework (2025) states that universal services should work alongside neonatal outreach teams to support families after leaving hospital as an effective way of upskilling in this area of healthcare. This will help deliver holistic early years services.

37                    Additionally, information from a child’s neonatal stay must be accessible to other universal service professionals. Seamless transition between services ensures that parents are well supported to be partners in their baby’s care and that babies have the very best quality of life.

38                   Lack of Neonatal Allied Health Professionals, Psychologists and Pharmacists

39                    The care a baby who is born premature or full-term but sick receives in a neonatal unit will be some of the most critical for their ongoing development across the rest of their early years, and beyond. Optimising the care they receive in hospital is essential for their long-term health and outcomes, yet many services are not staffed in line with national standards, which set out what is needed to ensure quality and safety of care.

40                    Despite investment through the Neonatal Transformation Programme, access to Neonatal Allied Health Professionals, Psychologists and Pharmacists (AHPPPs) remains extremely patchy – with 66 per cent shortfall between the recommended staffing levels for units and the staffing levels currently being provided in England[26].

41                    AHPPPs should be a core part of the Multi-Disciplinary Team (MDT) who care for babies on neonatal units. Their input not only supports improved safety and improved outcomes, but also greater embedding on Family Integrated Care.

42                    Optimising children’s health during the first 1000 days requires continued investment and development of neonatal staff across all professions, but particularly Neonatal Allied Health Professionals, Psychologists and Pharmacists (AHPPPs). Outreach teams should include AHPPPs trained in neonatal care as this is integral to delivering high-quality care[27]

43                   Lack of infrastructure to enable babies in neonatal care to have the very best outcomes

44                    For babies born needing neonatal care to have the very best outcomes, Family Integrated Care must be prioritised as this impacts their first 1000 days[28]. A family integrated model of neonatal care ensures parents and wider family are partners in their baby’s care, laying the foundations for high-quality early years services and better long-term outcomes. High levels of parental involvement have a myriad of different benefits for babies (in short and long-term outcomes) and parents (in the impact on mental health and bonding).

45                    Parental involvement in their baby’s care is proven to be best for babies’ developmental outcomes. Evidence has shown that long periods of direct care led to increased weight gain and improved breastfeeding rates, and skin-to-skin care has been linked to better infant reflexes at term and better gross motor development at four to five years[29]. Evidence also suggests that when parents can stay on the unit with their baby:

• the risks of mortality and morbidity are reduced
• babies are likely to require fewer care days than babies whose parents cannot stay on the neonatal unit[30].

46                    Further, parental involvement in care is critical for bonding and forming secure attachment. Parents who are supported to be with their baby for prolonged periods of time report increased parental confidence, reduced stress and anxiety scores[31]. Providing direct, hands-on care allows parents to feel like parents, which may be key for their own perceptions of attachment to their baby, and physical and emotional closeness is crucial for forming strong parent-infant bonds[32].

47                    However, services are unable to fully deliver Family Integrated Care due to poor infrastructure such as a lack of overnight accommodation on neonatal units for parents and the high costs of having a baby in neonatal care. The Getting it Right First Time report found that 70 per cent of intensive care units do not meet the standard for overnight accommodation when compared to their declared cot capacity[33]. To many parents, meaningful involvement in their baby’s care often means doing night-time feeds and being with their baby during the night – just as they would expect to do at home or on a paediatric unit[34]. Moreover, in Bliss’ 2022 survey, families reported spending an additional £405 per week while their baby was in neonatal care and parents on the lowest incomes were three times more likely to say that costs associated with being at hospital stopped them being involved in their baby’s care[35].

48                   Q6) How can the Government most effectively tackle inequalities in access and infant health outcomes for those from underserved groups including those with disabilities, or from ethnic minority or deprived backgrounds?

49                    There are significant inequalities in neonatal admissions and outcomes which must be addressed if the Government hopes to improve the health outcomes of children in their first 1000 days of life.

50                    The Preterm Birth Committee report recommends a co-ordinated effort to reduce the incidence of preterm birth and mitigate its negative consequences, including mortality and morbidity. They emphasise that “As well as improving outcomes for babies and their families, there is a clear economic case for this; reducing the immediate and longer-term impacts of preterm birth could generate substantial cost savings within healthcare and education” (p26)[36]. The proportion of preterm births out of total live births is highest among Black babies in England and Wales and preterm births were second highest among Asian babies[37], therefore, to tackle inequalities in infant health outcomes, the Government must reduce the incidence of preterm births.

51                    There is stark evidence that preterm birth is a major contributor to neonatal mortality and morbidity, and socioeconomic and ethnic inequalities are responsible for a substantial proportion of preterm births in England[38]. While stillbirth and infant mortality rates across all ethnic groups have been generally declining since 2007, babies from Black ethnic groups have the highest rates and babies from the Asian ethnic group consistently the second highest[39]. A recently published report on disparities in maternity care for disabled women in the UK underscored that there is a higher risk of neonatal and infant death in babies born to disabled mothers[40].

52                    As highlighted by the Race Health Observatory report, medical staff lack competence in identifying certain conditions such as jaundice in babies with black or brown skin tones as practices including the assessment of jaundice have been developed based upon White European babies[41]. Conditions such as jaundice are therefore identified post-discharge and leads to readmission[42]. Addressing such systemic issues, by investing in objective assessment tools and culturally competent training[43], would significantly improve outcomes for underserved groups, including those from ethnic minority or deprived backgrounds.

53                    There is also a postcode lottery in service provision and access to high-quality care with not every hospital having the right multidisciplinary team in place[44], meaning some babies miss out on vital Neonatal Allied Health Professional, Psychologist and Pharmacist (AHPPP) input. According to the latest Royal College of Paediatrics and Child Health data, AHPPP services were available in less than half of neonatal units during the week and almost completely absent during the weekends (when both parents are more likely able to be on the unit together). Moreover, only one-fifth of neonatal intensive care units had a psychologist available to support families during the weekday, and no services were available at weekends[45]. NHS England and other national bodies recognise that Neonatal AHPPPs are central to the implementation and embedding of developmentally sensitive care. As babies from disadvantaged backgrounds are more likely to experience poorer health outcomes, including developmental problems, a fully staffed Multi-Disciplinary Team can provide early, specialist support that can reduce the long-term impact of inequality[46].

54                    To effectively tackle inequalities in access and infant health outcomes, the Government must:

• Fund research looking into the drivers of inequalities in outcomes related to the care of babies
• Ensure every baby receives individualised, Family Integrated Care
• Renew national commitments to reduce preterm birth and neonatal mortality to focus on reducing inequalities.

55                   Q7) What could the Government learn from examples of best practice that exist in local authorities, NHS Trusts, or internationally? 

56                   The first 1000 days of life is a period that, for over 90,000 babies every year, includes neonatal care. This inquiry provides a significant opportunity to ensure that the family hubs programme and early years services are more intentional in their support for children who needed neonatal care during this critical time.

57                    The British Association of Perinatal Medicine’s 2025 Framework for Practice for Neonatal Outreach Services highlights how this can work in practice, with examples of neonatal outreach clinics within family hubs in Cornwall and South Tees. This model not only ensures families receive timely, appropriate information through a single point of access, but also strengthens continuity of care between neonatal inpatient and community settings. It demonstrates how joined up working at a local level can support babies more effectively and build stronger foundations for long-term outcomes[47].