Children and Families Bill

Memorandum submitted by Bliss (CF 89)

1. Background

1.1 Bliss is the UK charity that for over 30 years has cared for premature and sick babies who require special care. We work to ensure that the best possible care and support is provided for all premature and sick babies as well as their families. We provide practical and emotional support for families during this extremely challenging time, as well as continued support when their babies leave special care. We support research to improve care and raise awareness of issues affecting special care babies and their families, highlighting essential changes necessary to improve outcomes for these babies.

1.2 One in nine babies in the UK is admitted to neonatal care because they are born either sick or premature which equates to over 80,000 [1] each and every year. It is vital that every one of these babies receives the best possible care. Families are an essential component of care as well as high quality health services. Family-Centred Care has positive physical, physiological and social benefits for both baby and parent, as demonstrated in the POPPY research project [2] . Having parents with their baby and involved in their care reduces the length of hospital stay for babies, reduces the need for re-hospitalisation and reduces long-term morbidity, as well as reducing maternal anxiety and improving family well-being.

2. The Government’s proposed changes to parental leave

2.1 Bliss supports a number of aspects of the proposed changes to maternity, paternity and parental leave. We feel that the proposal to allow parents to share leave is very welcome and will allow families additional flexibility. This is a welcome development to for the families Bliss supports, families whose babies are in hospital for many weeks or even months and require close parental support. This flexibility, will allow some mothers to take a large amount of leave or full maternity leave, as well as enabling others to divide the leave equally with their partner so they may take it either simultaneously or consecutively, is a positive step forward.

2.2 Bliss believes that the current system of parental leave lacks the necessary flexibility and recognition of the needs of parents with premature or sick babies. Along with the need for flexibly is the need to recognise the additional costs of having a baby which spends time in some form of special care. There are significant benefits in enabling parents to be with their babies at this crucial time while it is in hospital and when discharged home, not just to the family, but also for the health and well-being of the baby itself

2.3 Despite a number of welcome improvements on the currently system of leave, Bliss feels that the Government’s proposed measures outlined in the Children and Families Bill, do not go far enough and fail to address a number of key issues for many thousands of families who have a child born premature or sick.

3. The need for additional leave for parents who have a premature or sick baby

3.1 Of the 80,000 babies admitted to neonatal care each year, around a quarter are admitted to intensive care and require life saving treatment. Treatment in intensive, high dependency and special care can last many weeks or even months, with babies usually staying in hospital until their original due date. ONS figures show that in 2005 in England and Wales 0.17% of births were extremely premature, with babies being born before 25 weeks, this equates to 1121 babies [3] . The families affected experience long periods of time where their baby is cared for in hospital, uncertainty and a great deal of emotional stress.

3.2 The current parental leave system and the proposed changes do not provide the necessary support in maternity, paternity and now shared parental leave provision for these families. Bliss recommends that the system of leave is amended to recognise the specific challenges families of premature and sick babies face, taking into account the baby’s specific needs and circumstances at the start of their life.

3.3 For these families, Maternity Leave begins long before the family can take their baby home from hospital. Of course it is welcome that the mother can be with her child in those early stages of life when it requires often intensive medical treatment. However, those who thankfully have a baby who is well enough to go home, then unfortunately have a reduced period of time to bond with their baby in its early months. Due to their premature birth, the baby is less developed physically, emotionally and developmentally at the point when parents must return to work and their leave ends compared to other mothers whose child is born at or close to term.

3.4 As one mother stated, "Emotionally I found it very difficult to accept that my Maternity Leave started as soon as my daughter was born, with my daughter being in hospital for 120 days it didn’t feel like I was on Maternity Leave’.

3.5 Many parents of prematurely born children tell Bliss that their biggest concern with their leave entitlement is that there is no consideration for their baby’s development in the current or proposed system.

3.6 One mother stated "I fail to understand how there can be no alternative provision made for families who have to endure such catastrophic events. As far as I am concerned, I spent 4 months in hospital – all day, every day, seven days per week. Not to mention the complete psychological trauma of going home every day without your baby and wondering whether you’ll see them again in the morning".

3.7 A potential solution would be to allow Maternity Leave to be extended, recognising the needs of the family and baby by extending the leave based on the period each baby must stay in neonatal care. This approach takes into account their individual health and developmental needs. An alternative approach would be to extend Maternity Leave by calculating it from the expected due date and adding any weeks the baby is born in advance of this.

3.8 It is without question that such families face specific challenges and different issues to babies born well and at or around their due date. As well as the babies’ health and development, studies have shown that having a baby in neonatal care puts the mother at higher risk of developing depression or anxiety [4] . Having to return to work after having less time to bond with their baby when at home than other families, contributes to further ongoing difficulties and emotional trauma.

3.9 There is significant research pointing to the value of parental leave and the impact on infant health. One study found that the extension of paid leave has significant effects on decreasing infant mortality rates for both neonatal (up to 28 days old) and post-neonatal (28 days to 1 year) periods [5] .

3.10 Such changes are not without precedent, a number of others countries provide welcome support to mothers and/or fathers of premature or sick babies recognising the additional needs these families face. In Croatia for example, leave is extended in the case of premature births. In Iceland too, if the child stays in hospital more than seven days after birth, additional leave is provided for the length of the stay, up to a maximum of four months. In Finland, if due to premature birth leave is started earlier than 30 working days before the expected date of delivery, parental leave is extended. These positive policies clearly indicate that such changes are possible both to implement and for employers to administer. Such a change here would be a significant recognition of the special circumstances and difficulties endured by the families of some of the most vulnerable and unwell babies.

4. The need to recognise the additional costs of having a premature or sick baby

4.1 The costs of having a baby in special care are significant, unavoidable and hard, if not impossible to plan for. Bliss conducted a survey of parents in 2010 with over 300 responding [6] . This research indicated that the average cost of having a premature or sick baby in hospital was £2,800. This works out at £310 for every week they are in hospital receiving special care. These average figures illustrate the strain that can be put on family finances when a baby is born too soon or too sick. This financial strain worsens the already stressful and emotionally traumatic experience of parents in these situations.

4.2 These additional costs include travel to and from hospital, car parking charges, food, childcare for additional children at home, potential loss of earnings as well as accommodation costs. Forty per cent of parents did not receive any form of financial help meeting any of these additional costs and of those who did, it was mainly to meet simple car parking charges (35%). It is clear that parents rely on any support they receive through leave payments. It is therefore vital for these families that they receive significant levels of maternity, paternity and under the new system, shared parental leave pay to ensure they can meet these costs.

4.3 Unfortunately at present, families of premature and sick babies struggle to meet these additional financial demands. Often fathers in particular cannot afford to take their paternity leave. This again can be a heightened problem in instances where babies are in hospital and costs are higher. A Working Families survey [7] of fathers in 2010 found that 72% of those responding who did not take entitled paternity leave did so as they felt they could not financially afford to take it. Such financial constraints on parents prevent them from spending crucial time with their babies whilst they are in special neonatal care.

4.4 When Bliss asked parents about the costs of having a premature or sick child, the largest costs were incurred from loss of earnings (£1,260), where the father could not work while their child was in neonatal care. A number of respondents to the Bliss survey [8] said that they did not have understanding employers and many responded saying their requests for leave were received unsympathetically. One father who responded to the survey informed Bliss that he had to give up work so that he could be with his baby who was in a critical condition in hospital.

4.5 Bliss supports calls for the initial 6 weeks of leave to be paid at 90% average earnings and thereafter shared leave should be paid at the national minimum wage level.

5. Eligibility for Leave

5.1 As stated previously in this submission, parents play a crucial role in the care of a premature or sick baby. If parents are able to be with their baby and involved with their care whilst in hospital, this has positive impacts on the baby’s health reducing hospital stays and re-admissions among other positive outcomes. As well as barriers due to the low remuneration of leave, there also exist other procedural barriers which prevent parents from taking leave. The Government’s own impact assessment [9] on the current proposals indicates that in only 36 per cent of all maternities in 2010 would fathers have been eligible to take Shared Parental Leave. Some indications are also that take up will be considerably lower than this.

5.2 Currently, the dilemma for fathers of premature or sick babies is whether to take their two week paternity leave while their baby is in hospital, or to save it for when their baby returns to home. This is a heart-wrenching decision for many fathers. Whilst Shared Parental Leave offers the potential for longer leave for fathers, the qualifying rules and complexity mean that far too many families will be unable to access extended leave.

5.3 Complex rules mean that Shared Parental Leave is only available to couples who are both economically active, with both parents having to meet specific earnings and employment requirements. Couples will need to have at least 26 weeks’ continuous service with the same employer at the 15th week before the baby is due to qualify for Shared Parental Leave. This reduces eligibility and so potential beneficiaries of the scheme. This is a problem particularly for fathers who play a very important role in the development of a baby. The importance is even greater in the case of parents who have premature or sick babies, studies show that skin-to-skin contact with parents in the early weeks and months of life has a positive effect on the health of the baby [10] .

5.4 Ensuring ‘day one rights’ to Paternity Leave and Shared Parental Leave would be welcome for parents of sick or premature babies, as it would also remove some confusion and uncertainty about the calculation and eligibility for leave. It is not clear how requirements that parents must have worked 26 weeks by the 15th week before the baby’s due date, will impact families whose babies are born extremely prematurely. Neither is it clear how they will be impacted by requirements to give 8 weeks’ notice of an intention to take the proposed Shared Parental Leave, where their child is born early and unexpectedly.

5.5 Whilst guidance from the Department for Work and Pensions makes provisions for mothers whose babies are born before the qualifying week, i.e. they must within 3 weeks of birth supply evidence of birth to their employer [11] , there is seemingly no guidance about paternity leave and currently we are not aware of any plans to develop guidance of this nature for the proposed Shared Parental Leave either. In fact, it appears to be the case that a father’s ability to take Paternity Leave earlier than planned, or for families to access the new Shared Parental Leave earlier, would be down to the possible goodwill of their employer.

5.6 We would welcome a guarantee from the Government that all parents who have children born prematurely, significantly before the due-date and even before the 15 week before due-date calculation point for entitlement to leave, have guaranteed rights to take maternity, paternity and shared parental leave earlier as needed, and the 8 week requirement can in these circumstances can be waived. We feel that it is important for a baby to have their family with them when in neonatal care and this has positive impacts on their development and health outcomes.

6. Other welcome improvements to the Bill

6.1 Bliss supports calls for changes to provisions for antenatal appointments to allow ‘reasonable time-off’ for antenatal appointments for mothers and fathers. A high number of premature and special care babies are twins and multiple births. Complex pregnancies and multiple births often require additional antenatal appointments, with an average of 8 for women expecting twins [12] . Some, particularly in rural areas, have to travel large distances for antenatal appointments and the 6 and a half hour limit for each test may be a particular challenge. We believe that both mothers and fathers should be allowed to both attend the minimum numbers of scans they should receive, which NICE says is 6 appointments. Such appointments are vital for the health of the mother and child, with complex pregnancies it is vital that parents are able to attend them as needed.

6.2 Bliss welcomes the increase in flexibility promised by the Government’s proposals, however in Modern Workplaces, flexible parental leave as outlined was to be even more flexible than the now proposed Shared Parental Leave. Under this original proposal parents would be able to take their leave on a part-time basis. Part-time leave and pay would allow more flexible leave than the now proposed ‘week blocks’, and would be a welcome opportunity for many parents, particularly those with a sick baby in hospital, giving them greater opportunity to share leave and manage the need to work and spend time with their baby. Bliss supports calls for the Bill to be amended to allow for part-time leave allowing transition back to work.

7. Conclusion

7.1 The current arrangements and Government proposals under the Children and Families Bill fail to recognise the difficulties of parents of sick or premature babies. This small but significant group of families deserve consideration for their special circumstances. Relatively small changes and amendments to the Bill could give these babies a better start in life with the full support of their parents.

7.2 Firstly, this would be to ensure that parents of premature or sick babies could have extended leave for the number of weeks that their baby is premature or that they remain in neonatal care.

7.3 Secondly, greater remuneration for parents while on leave would be very welcome, and would particularly benefit families experiencing high financial pressures when their child is premature or unwell and in hospital for long periods.

7.4 Thirdly, we feel that the administration of leave and various eligibility requirements should be simplified allowing ‘day-one’ rights to leave, as well as providing guidance for parents of premature babies about notice requirements and calculation periods, ensuring more can be with their baby during this difficult and crucial period.

April 2013

[1] Bliss, The chance of a lifetime?, 2010


[3] Moser, K et al. (2007) Introducing new data on gestation-specific infant mortality among babies born

[3] in 2005 in England and Wales Health Statistics Quarterly 35 Autumn

[4] National Health and Medical Research Council, (1999), Postnatal depression: A systematic review of published scientific literature to 1999.

[5] S. Tanaka, (2005 ), ‘Parental Leave and child health across OECD Countries’ , The Economic Journal 115, p. 23.

[6] Bliss, (2010), The chance of a lifetime?


[8] Bliss, (2010) The chance of a lifetime?


[10] POPPY steering group. (2009), Family-centred care in neonatal units. A summary of research results and recommendations from the POPPY project . London: NCT.


[12] NPEU (2011), Maternity care for women having a multiple birth ,

Prepared 19th April 2013