Whitley Bay mum welcomes report that will 'make a world of difference' to families with premature babies
by Sam Volpe · ChronicleLiveA campaigning Whitley Bay mum who saw one of her twins die at just three weeks old has said recommendations to improve care for babies born prematurely were "music to my ears".
Nadia Leake's son Harrison is now 12 - but his first weeks, and those of his twin Raif, who died, were marked by trauma and the family were initially told neither child would survive. Over the past decade, Nadia - who has published a book Surviving Prematurity and is completing a PhD on the subject - has become a leading voice urging for improvements in the support available to families like hers in one of the most difficult times imaginable.
Being born preterm - officially defined as prior to the 37th week of pregnancy - is the biggest cause of neo-natal death, and those who are born premature are more likely to have a range of lifelong health conditions, communication difficulties or special educational needs.
Earlier this year Nadia gave evidence to the House of Lords' Preterm Birth Committee and that body has now published a wide-ranging report and urged the Government to act to increase the maternity workforce, provide more equitable services to families facing this. The report also starkly warns that a national target to get the rate of preterm births below 6% by next year would not be met.
Specialist training for health visitors and ensuring people in all regions of the UK have access to the resources needed to provide the standard of care families need are also among the recommendations.
Speaking to ChronicleLive, Nadia said the report was an "amazing" body of work. She added: "Now the report and the recommendations need to be taken on board. That's the first step. They now have two months to respond. I'm really hopeful that the Government will take this seriously - especially with the change in Government we've seen and the - hopefully - move towards more funding for the NHS.
"These little patients are so young - but they will continue to cost the NHS if they aren't treated properly now. It'll make a world of difference, absolutely. To see the focus on for example family integrated care - that's music to my ears.
"I think this report is extremely reflective of the state of play. If even a third of the recommendations were implemented it will make a huge difference."
"Family-integrated care", means - as Nadia told the committee in April - ensuring that parents are intimately involved in their baby's care, can stay with the baby as much as is physically possible and are able to hold the baby as much as possible, among other measures.
Earlier on Thursday, speaking to BBC Radio 4 Women's Hour, Nadia retold her story and said these days Harrison's story was going well - and he is now "a 12-year-old boy doing 12-year-old boy things".
Along with Nadia, the committee also heard evidence from Dr Sundeep Harigopal, clinical lead at the Northern Neonatal Network and a consultant at Newcastle's Royal Victoria Infirmary. Dr Harigopal's evidence included detail of how whether staff are able to take up training “varies between hospitals depending on their staffing levels and their matrons’ ability to release time".
Lord Patel, chair of the committee, said: "We heard stark evidence on the impact of preterm birth, which can be sudden and unexpected. While many babies born prematurely go on to do well, for some children and families, preterm birth has significant, and often lifelong, adverse consequences.
"Reducing the immediate and longer-term impacts of preterm birth should therefore remain a key objective. Improving outcomes for preterm babies and their families could also generate substantial cost savings within healthcare and education.
"We thank all the witnesses who shared their personal experiences with the Committee. Their accounts made clear why more must be done to support preterm babies and their families to thrive.
"Improving the life chances of the few requires effort by the many. We hope that the key findings of our report will form part of the co-ordinated effort needed to ensure that this happens.”
In response the Government has spoken of how it inherited a "broken NHS" and "serious issues" with maternity and neonatal services. A Department of Health and Social Care (DHSC) spokesperson said: "While change will not happen overnight, we are working urgently to address stark health inequalities and ensure all women and babies, regardless of background, receive safe, personalised and compassionate care.
“We have committed to training thousands more midwives, and we will tackle wider social determinants of ill health, which increase the risk of preterm birth, by shifting the focus from treatment to prevention as part of our 10 Year Health Plan.”
The Government is understood to be considering "the immediate action needed", especially when it comes to the use of targets. DHSC has also committed to training thousands more midwives, it said.
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