Recent successes

The issue

Being born early can have a lifelong impact on babies, long after the stress and interventions of a neonatal admission. For parents, a premature birth and subsequent neonatal stay is often marked by separation, anxiety and financial pressure.

Evidence-based policy decisions require comprehensive data on the causes, consequences and potential interventions for preterm birth. Hence the urgent need for the Preterm Birth Inquiry.

What we did

We provided written evidence and our Chief Executive, Caroline Lee-Davey, gave oral evidence to the Committee. We urged them to prioritise:

• Investment in accommodation to address the routine separation of parents from their babies on neonatal units
• A new ambition which focusses on reduces the stark inequalities in neonatal outcomes between ethnic and socio-economic groups
• Workforce plans that support the recruitment and retention of fully staffed neonatal multidisciplinary teams.

The Preterm birth: Reducing risk and improving lives report was published in November 2024, ahead of World Prematurity Day.

The issue

The need for additional paid leave for parents of babies in neonatal care was clear. Without access to additional time off, fathers and non-birthing parents are routinely excluded from their baby’s care by the parental leave system and often have no choice but to return to work while their baby is still in the hospital.

Mothers and birthing parents use up much of their entitlement before their babies are home and are forced to return to work before they are ready due to financial pressure.

What we did

Alongside parents and other charities, we’ve campaigned for many years to give parents extra leave and pay when their baby is in neonatal care. As a result, the Conservative Party included the proposal in their 2019 manifesto.

However, when the Bill they had planned to use to bring it in was not introduced as promised we started campaigning again, this time to get a backbench MP to support it.

As part of that campaign, we brought together over 30 charities, unions and professional bodies to call for the new parental leave entitlement, and 3,000 campaigners emailed their MPs to ask for their support. Fortunately, the Neonatal Care (Leave and Pay) (NNLP) Bill was introduced as a Private Member’s Bill by SNP MP Stuart McDonald in 2022. Read our what we shared with MPs about our campaign (PDF).

Throughout the campaign, we worked with MPs, parents, civil servants, and employment specialists to make sure the new law will work for the families that need it.

The Neonatal Care (Leave and Pay) Act achieved Royal Assent on the 24th of May 2023. The new entitlement won't be introduced until April 2025, we have put pressure on the Government to introduce this more swiftly, but the implementation date remains the same.

We are still campaigning on other areas of employment support, such as entitlement for self-employed parents.

The issue

The COVID-19 pandemic impacted all areas of healthcare, including neonatal services.

Parent access to their babies was severely restricted, with some units only allowing parents to be present for a few hours a day and parents only able to attend one at a time. Other family members were unable to visit at all. Parents were unable to have skin-to-skin contact with their babies due to the widespread use of PPE.

There was also inconsistent practice between neonatal units and a lack of clear and consistent guidance from Governments and health services across the UK.

What we did

Bliss campaigned for national guidance to ensure consistency and best practice across the UK – meeting with Parliamentarians, Ministers and health service leaders.

Bliss published and continuously updated a position statement on parental access to neonatal units during COVID-19, underlining that babies’ developmental outcomes are best when parents remain partners in caregiving and are not treated as visitors.

Bliss also published ‘Locked out: the impact of COVID-19 on neonatal services’, combining parent experiences and a survey of NHS Trusts about what their parental access policies were roughly one year on from the start of the pandemic.

Bliss’ position statement was raised with NHS Trusts and Health Boards to share best practice, helping some health services make their parental access policies more flexible.

Nearly 4000 people joined our COVID-19 focused Parents Aren’t Visitors campaign, calling on UK Governments and health services to return to unrestricted parent access and provide better financial support for families during the pandemic.

Our campaigning supported changes to local and national guidance during the pandemic. Read about Bliss’ involvement in the UK COVID-19 inquiry.

The issue

Our 2014 report (PDF) focusing on the costs of having a premature or sick baby in Scotland, estimated the additional cost to parents of babies in neonatal care is £218 per week. As a result, 58 per cent of parents reported that their mental health had worsened because of the financial burden.

What we did

We surveyed 85 Scottish parents in 2013 and this fed into several recommendations that we made to the Scottish Government. Recommendations included that a family fund be set up for provision of a financial support policy for parents with a baby in neonatal care.

We continued to work with the Scottish government, providing feedback on their ‘The Best Start – A Five Year Forward Plan for Maternity and Neonatal Services’ report. This report underscored the need for national agreed policy on their approach to reducing neonatal expenses.

We then mobilised supporters to contact their representatives in the Scottish Parliament, and worked with MSPs to raise the issue with the Government.

A year after the Neonatal Expenses Fund was launched, the Scottish Government highlighted that funding was provided to 435 families from 1359 separate claims (of which 99.6 per cent were approved) and that the largest proportion of spending was on meals and mileage claims.

An evaluation of the scheme in Scotland found that parents reported that the fund relieved financial anxieties during a very stressful period and helped them spend more time with their babies in the neonatal unit as a result of being able to claim.

The scheme has been so successful that in 2021 the Scottish Government extended the scheme to families of any child receiving inpatient hospital care when the Neonatal Expenses Fund became the Young Patients Family Fund.

The issue

Research by Bliss in 2015 showed that neonatal units were unable to meet national standards for high quality care, putting babies’ safety and survival at risk and impacting on their long-term development.

What we did

Shortly after the NHS’ Better Births report in 2016, together with 16 professional bodies and charities and nearly 3800 supporters, we wrote to the Chief Executive of NHS England, Simon Stevens.

Our letter called for Stevens to review funding levels for neonatal care so that services could meet the Government and NHS’ own standards for safety and quality.

In 2018, 1349 Bliss supporters wrote to the Health Secretary at the time, Jeremy Hunt, to ensure that neonatal services were not left behind as the Government increases spending on the NHS and developed its long-term plan.

The Neonatal Critical Care Review included actions on optimising medical staffing; reviewing and investing in neonatal capacity; and developing and investing in support for parents.

Soon after, the, NHS Long-Term Plan was published and committed the Government to provide the funding needed to progress actions from the NCCR.

Not all this funding commitment has yet been realised and we will continue to campaign for services to receive the funding they need.

The issue

As a result of being born prematurely, some children might benefit from starting their reception year a little later. While there is no legal reason why children can’t start reception year at five rather than four, many schools and admissions authorities are reluctant to allow children to start school at this age.

This is why we have been campaigning for many years for schools to consider a child's due date, rather than birth date, when deciding which year group to put them in.

What we did

Following campaigning from Bliss and parents, a revised English School Admissions Code was released in December 2014, alongside updated guidance, Advice on the Admission of Summer Born Children. In March 2015, Bliss gave evidence to the Education Select Committee and scrutinised the evidence used by the Government to inform its summer born policy.

We pressed for a change of policy so that once a child successfully delays their school start, they are not forced to miss a year later. We also highlighted the lack of awareness amongst teachers about how children are affected by their prematurity once they start school.

Updates to the advice for parents that were recommended by Bliss include details of when entry tests happen and, subsequently, when parents would need to submit their request for delayed secondary school start. Moreover, suggestions were made to reiterate in the guidance for Admissions Authorities that children born prematurely are at higher risk of developmental or health concerns.

We will continue to campaign on this issue as there’s still more to do. Not all summer-born children who were born premature are able to enter the school year that their parents think would be best for them.

The issue

Before the Parental Bereavement (Leave and Pay) Act gave parents paid bereavement leave if they had a child who died under the age of 18, employed parents were not entitled to any statutory time away from work under these circumstances.

From our work with parents who had been bereaved on a neonatal unit, we knew that while some employers were compassionate and accommodated the needs of their employees, this was not always the case.

What we did

In 2018 we helped inform what this entitlement looks like based on parent feedback - so that it works for parents of babies who die in neonatal care.