Smallest Things
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New Strategy 2024-29 launches
The Smallest Things reveals ambitious plans for a better world for premature babies and their families after neonatal care
Our new Strategy went live in November for World Prematurity Month following a sneak peek webinar for some VIP supporters. The Strategy was entirely put together by parents of children born prematurely.
Devised by our trustees, informed by our After NICU research and reviewed by our Lived Experience panel, the strategy reveals how we will create a world where:
No NICU parent feels alone
Children born prematurely are supported beyond neonatal care
Professionals have training and guidance
Neonatal families have a voice in research and policy-making.
Inspired to get involved? Subscribe to our email newsletter, find out how you can become a Campaigner or fundraise for us! We’re a small but mighty charity with big plans – and we need your help to make them happen.
House of Lords’ Report: Preterm birth is ‘a journey that lasts long after leaving the hospital’
The House of Lords’ Preterm Birth Committee publishes findings of inquiry into prevention and impact of premature birth.
The report, Preterm birth: Reducing risk and improving lives, outlines in clear detail the lasting impact that premature birth can have on families and children born prematurely. It documents a journey that is familiar to hundreds of thousands of families who have experienced the premature birth of a baby or babies.
Parents voices have been heard!
Founder of The Smallest Things Catriona Ogilvy (below), who gave evidence in person to the committee, welcomes the report, which reflects the significant, and sometimes lifelong, impact premature birth can have on children and their families. The Smallest Things now calls on the government to take urgent action to implement the committee’s recommendations in full.
“We welcome this new report, with parents of children born prematurely telling us their voices have been heard. The journey doesn’t end for families when they bring their baby or babies home from hospital: the trauma and ongoing impact of premature birth can have a lasting effect. We urge the government to implement all the report’s recommendations swiftly, so that families can finally get the support they need.”
Highlights
The inquiry report shares the parent voice, beginning with four powerful quotes:
‘Life before the neonatal unit is mostly irrelevant when you find yourself stood, post partum, next to your baby in an incubator, hoping and wishing that you make it out safely … The vulnerability is beyond crippling.’
‘At exactly 30 weeks my twins were delivered by emergency caesarean. One night I was at Pilates and the next I was in hospital and supposedly a mother of two.’
‘The impact of prematurity does not end upon discharge from a neonatal unit.’
‘This experience has stayed with us for life.’
The Smallest Things is pleased to see the report calling on the government and NHS England to:
Detail the steps they are taking to ensure equitable access to neonatal outreach and perinatal mental health services for all families that experience preterm birth.
Work with training providers to ensure that health visitors have opportunities to develop specialist knowledge of the needs of preterm babies and their families.
Determine why follow-up assessments recommended by NICE (National Institute for Health and Care Excellence) are not being consistently delivered, and to prioritise work to address this.
We are also delighted to see the committee’s support for ‘the ambition of programmes such as the Prem Aware Award scheme to increase awareness of the impacts of prematurity in schools.’
Deputy Prime Minister Angela Rayner visits
Prem Aware School Our Lady of Mount Carmel
L-R: Anne-Marie Spence, Janet Bostock, Charlie Rayner, Helen Hayes, Angela Rayner, Catriona Ogilvy, Sarah Miles, Carly Hague
On Friday 11 October, Deputy Prime Minister Angela Rayner took time out of her busy schedule to visit Our Lady of Mount Carmel RC School, which won the Prem Aware Award in 2021. She was accompanied by her 16-year-old son, Charlie, who was born at 23 weeks.
Trustees Catriona Ogilvy and Sarah Miles joined headteacher Helen Hayes, SENDCo Janet Bostock and other teaching staff and parents to welcome Angela Rayner to the school, which has led the way in supporting children born prematurely in the North West.
Deputy Prime Minister Angela Rayner, Mum to Charlie, born at 23 weeks, said:
“It was lovely to meet The Smallest Things team and hear about the incredibly valuable work they are doing to support children that were born prematurely as they progress through their education journey.
As Mum to a premature baby myself, I am aware of the rollercoaster of emotions that families affected by this go through and I know that the worry doesn’t end when you leave hospital. I was really impressed with the dedication shown by staff at Our Lady of Mount Carmel RC Primary to make sure that all children are given the best chance to thrive.”
Founder of The Smallest Things Catriona Ogilvy, Mum to Samuel born at 29 weeks, commented:
“We were thrilled to meet the Deputy Prime Minister and discuss what matters most to neonatal families: from the lasting impact of premature birth on learning and development to improving support for parental mental health after neonatal intensive care. We also talked about making sure the new Employment Rights Bill meets the needs of all neonatal families.
As a parent-led charity, we recognise that Angela, Mum to Charlie, born at 23 weeks, gets it. Like us, she’s been there too. We look forward to working with Angela and her team to make sure the needs of families of children born prematurely remain high on the new government’s agenda.”
The Smallest Things asks new government to change lives of premature babies
Our new Manifesto clearly lays out how the new government can support families after neonatal care and improve the lives of children born prematurely. More than 50,000 children are born prematurely in the UK each year. With some simple measures put into place, these children can fulfil their potential after NICU and through their school journey.
Lots of supporters have already signed up to become a Smallest Things campaigner and contact their MP with our three key questions. Will you join them?
Catriona guests on Mummafesto podcast
Did you catch our founder Catriona Ogilvy on Stella Creasy MP's podcast, Mummafesto? She joined Stella to talk about The Smallest Things' successful campaigning that resulted in the new Neonatal Care (Leave & Pay) Act. Explaining how the power of the parent voice plus eight years of persistence changed the law, Catriona also discussed launching the Employer with Heart charter. She emphasised that truly compassionate, family-friendly companies don't need to wait for the new law and can sign up to our Employer with Heart charter that goes above and beyond statutory changes.
Congratulations to our London Marathon runners!
They did it! On Sunday 21 April, #TeamSmallestThings took on the London Marathon. Please join us in congratulating our runners Matt, Veronica and Jenny on their incredible achievement. They ran 26.2 miles and together raised over £7,000 to support our work to create a better world for premature babies and their families after neonatal care. And there’s still time to donate! Click the buttons below to support our work and celebrate the huge efforts of Matt, Veronica and Jenny.
The Smallest Things at Manchester Marathon!
On 14 April 2024, our first-ever Manchester Marathon runner, Jennie Heggie, crossed the finish line after 26.2 miles. Jennie raised over £1,700 to help fund our work to support premature babies and their families after neonatal care. Huge congratulations and big thanks to Jennie – we think you’re amazing!
“So much support along the way – quite overwhelming to hear a tunnel of people screaming my name! Thanks to everyone for supporting and sponsoring me.”
Founder Catriona Ogilvy gives evidence at Preterm Birth Inquiry
Did you spot our founder Catriona Ogilvy at the House of Lords Preterm Birth Inquiry (above)? We submitted written evidence, based on The Smallest Things After NICU Report and other research, and were invited to give oral evidence in person at the meeting on 19 February. The committee was keen to hear about the experience of coming home from NICU and the challenging months and years that can follow. Thank you to all parents and carers who completed our surveys and provided feedback – we carried your voices with us to the House of Lords.
Kerry’s Small but Mighty Challenge raises over £4,000
The Smallest Things trustee Kerry (above, middle, with trustee Sarah, left, and founder Catriona) smashed her very special challenge: running 26km from 2am to 2pm for her 26-week, 2lb 2oz baby Alfie. Even the sun came out to cheer Kerry on the final stretch. Friends and family joined her at the finish line to celebrate raising awareness of the Employer with Heart charter and more than £4,000 for The Smallest Things. Congratulations Kerry!
Live webinar for parents and families of premature children is huge success. Watch now!
Click Play to watch our edited film of the popular event
The Smallest Things and University of Leicester teamed up to host their first live webinar for parents, carers and families wanting to support their premature children at school. This hugely popular event boasted a packed and varied line-up:
“100% of respondents said they understood more about how premature birth can affect children’s development after watching ‘How to support your premature child at school’. The same number stated they also understood more about their potential educational needs.”
• Professor Samantha Johnson (Professor of Child Development) took us through the latest research findings into educational needs and how schools can get ready to teach children born prematurely.
• Founder Catriona Ogilvy introduced the Prem Aware Award for schools and explained how parents and carers can ask schools to apply.
• Four teachers from Prem Aware schools explained why they took the three steps to achieve the Prem Aware Award and how it's making a difference to their communities.
• Director Sarah Miles chatted to Nicola Scott about her experience of the education system following her premature birth at 24 weeks in 1989.
• Trustee Matt Wilkinson talked about his experience of the education system as a parent of two primary-aged children born prematurely.
Three new ‘Employers with Heart’, each one supporting staff whose babies are born prematurely
It might only be the third week of January 2023, but we are already celebrating and welcoming three new employers to our Smallest Things ‘Employer with Heart’ Hall of Fame.
We are thrilled that Northamptonshire Healthcare NHS Trust, Kent Community Health NHS Trust and the University of Leicester have all announced new parental leave entitlments in line with the Smallest Things Employer with Heart Charter, extending paid parental leave for staff whose baby or babies are born prematurely.
Welcoming the news that the University of Leicester had followed in the footsteps of other UK universities, Founder and Chair of The Smallest Things, Catriona Ogilvy, said:
“We are thrilled to award the University of Leicester with our Employer with Heart charter mark. These changes will mean that University staff will not need to worry about work or money following the birth of a baby born prematurely and will give back precious time to parents to be with their baby or babies once they come home. We hope to see many more universities and UK employers making these important changes, going above and beyond new statutory requirements outlined in the Neonatal (Leave and Pay) Bill to support parents through the trauma of neonatal care and beyond.”
The news that more employers are taking steps to support the needs of staff following the birth of a baby or babies born prematuely comes just days before the third reading of the Neonatal (Leave and Pay) Bill in Parliament.
The Smallest Things Top 10 of 2022
Our tiny charity has continued to make a big impact this year. From changing the law (almost!) to educating the educators, we’ve continued to fight for a better world for premature babies and their families after neonatal care. Here are just a few highlights…
Red book stickers relaunch
In September, we printed more stickers for red books and they have been in red-hot demand ever since. So far, we have sent out more than 25,000 stickers to over half of all neonatal units in the UK.
Neonatal (Leave & Pay) Bill second reading
July saw Stuart McDonald MP present his Bill to Parliament. We worked closely with Stuart McDonald MP and his team in preparation, watched from the viewing gallery and celebrated afterwards when it was unanimously passed by MPs from all parties. The Bill passed Committee stage on 7 September and we look forward to the third reading on 20 January 2023. The Smallest Things has campaigned for extended paid parental leave for families of premature babies since 2015 and continues to fight for change.
3. Growing team
Lynne Peachey and Kerry Myles joined the team in November. They’ll be working alongside Catriona Ogilvy, Sarah Miles and Matt Wilkinson to raise awareness of premature birth and the needs of families following neonatal intensive care. True to our values, all of our trustees have had children born prematurely.
4. Prem Aware for schools Award
Our scheme to help schools support the educational needs of children born prematurely has gone from strength to strength. So far, 28 schools have undertaken the free online training and achieved the award, two have pledged to do so by World Prematurity Day 2023 and many more are in the pipeline. Prem Aware Ambassador recruitment began in November with the aim of championing the Prem Aware Award to schools on a regional level. We’ve had lots of applicants and will be announcing our new ambassadors in early 2023.
5. Employer with Heart charter
Our Employer with Heart Hall of Fame proudly hosts the logos of 54 companies and organisations. We’ve continued to be delighted by how many employers want to make policy changes to support their staff, both emotionally and financially, following premature birth.
6. World Prematurity Month 2022 blog series
November saw the launch of our biggest series of stories yet. Six parents, all at different stages of their journeys, shared their stories with us to raise awareness of the ongoing challenges children born prematurely face. These uniques perspectives included a blog from a NICU nurse whose son Spencer (top picture) was born at 30 weeks and cared for by her colleagues at her workplace, the neonatal unit.
7. Dads do NICU
Ahead of Father’s Day in June, we sent out ‘Dads do NICU too’ posters to neonatal units across the country. Designed to reassure dads and partners that they are not alone and to encourage sharing experiences, the posters took pride of place in many units.
8. Speaking out
We’ve been travelling the country spreading The Smallest Things word. Founder Catriona Ogilvy spoke about our Prem Aware Award at an event about the educational needs of children born prematurely in Glasgow and trustee Matt Wilkinson followed suit at the University of Leicester for an event on World Prematurity Day (17 November).
9. Smallest Things Big Picnic weekend
Supporters from around the country got together with family and friends in June to raise essential funds for our tiny charity.
10. Read all about us!
Or maybe you listened to us on the radio or a podcast? We’ve been sharing families’ stories far and wide, with both local and national press, to highlight the ongoing journey of premature babies after neonatal care - and the need for more support.
If you’d like to support the work of The Smallest Things into 2023, please donate now – either in your name, as a gift or in lieu of Christmas cards this year. We receive no official funding and rely entirely on donations and grants to continue our fight for a better world for premature babies and their families after neonatal care.
Storrington Primary School awarded Prem Aware status
Storrington Primary School in West Sussex has become the latest school to meet all Prem Aware requirements: completing the free PRISM e-learning resource to train staff; asking parents/carers if their children were born prematurely as part of their admissions process; and requesting feedback from parents on support provided for pupils born prematurely.
A Smallest Things survey revealed nine out of 10 parents of children born prematurely felt there was a need for more awareness and understanding in schools.
We are delighted that schools, like Storrington Primary School, are taking steps to increase knowledge and understanding of the lasting effects of premature birth. Having trained teachers who know what to look out for and how to help will make a big difference to children in the classroom. We hope this will inspire other schools to take these steps to become Prem Aware.
“We are so proud to have achieved the Premature aware award. Thanks to the hard work of Fiona Bull and Helen Woodley who work at Storrington Primary School, awareness of premature birth has been raised and we can better understand how prematurity can affect development and recognise any additional learning needs and support children on their journey through education might need to achieve their potential.”
Storrington Primary follow in the footsteps of St Augustine’s C of E Primary School
“Not long after the birth of my daughter at 26 weeks, I came across The Smallest Things charity. I found their website and social media pages to be of great support during our time in NICU and beyond. As a SENCo I was delighted to discover the PremAware award for schools and thought it would be hugely beneficial to our already inclusive school in raising awareness of the prevalence and long-term effects of premature birth amongst our school community. After completing the Prism training, staff felt they had a much greater understanding of how to support children born preterm and the difficulties they may face with their learning. The headteacher said the training was some of the best she had ever received. We hope the award will reassure parents and carers of children born preterm that all our staff have the knowledge and understanding to best support their children.”
The Shrewsbury & Telford Hospital NHS Trust becomes an Employer with Heart
The Smallest Things are thrilled to announce that The Shrewsbury and Telford Hospital NHS Trust, which employs 6500 staff, has signed up to The Smallest Things ‘Employer with Heart’ charter by amending its maternity and paternity leave policies, meaning that mothers and fathers who work at the organisation will be entitled to extra paid leave after a premature birth and parents will be supported when returning to work following the birth of a premature baby.
The Employer with Heart charter was launched by The Smallest Things in February 2018, asking employers to extend paid leave for staff whose babies are born premature. The Shrewsbury and Telford Hospital NHS Trust joins a growing list of employers supporting staff following the premature birth of a baby and we’re delighted to add them to our Employer with Heart Hall of Fame.
“We are delighted that The Shrewsbury and Telford Hospital NHS Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This important change means that parents who work at The Shrewsbury and Telford Hospital NHS Trust can focus on spending precious time with their premature babies without worrying about work or pay.”
Monkhouse Primary School becomes Prem Aware
Monkhouse Primary joins a growing list of schools taking steps to support the educational needs of pupils more prematurely.
“We are excited to receive our award as we want all our children to be ambitious, courageous, resilient, respectful and kind, and to achieve the very best they can in life, regardless of their starting points.”
Michelmores LLP becomes first Employer with Heart Law Firm
The Smallest Things is delighted to announce that Michelmores LLP have become the first law firm to sign up to our “Employer with Heart’ charter.
By amending their maternity and paternity leave policies to entitle their employees to extra paid leave after a premature birth and by pledging to support parents when they return to work after a premature birth, they join our ‘Employer with Heart’ Hall of Fame. This will make an enormous difference to families of babies born prematurely working at Michelmores LLP and we hope to see others in the sector follow suit.
“This Mental Health Awareness week we launched several new policies and initiatives that aim to open -up conversations on topics that affect our colleagues, yet are rarely spoken about at work and provide practical support for those affected. Being part of the Employers with Heart charter is our way of recognising the significant impact having a premature baby can have on both the parents and baby, which can take time for the whole family to recover from, both physically and emotionally. By being part of the Charter we are giving our valued colleagues time and space they need at a really difficult time. We are proud to be the first law firm signatory of the Employers with Heart Charter.”
Scotton Lingerfield Primary School Becomes Latest Prem Aware School
We are delighted that Scotton Lingerfield Primary School in Knaresborough has become a Prem Aware school. This will make such a difference to children born prematurely who attend Scotton Lingerfield who may require additional educational support.
Training and Awareness
Scotton Lingerfield have met all three of our Prem Aware requirements to gain the award - accessing the free PRISM e-learning training for staff; asking parents if children were born prematurely as part of their admissions process; and requesting feedback from parents on extra support required or provided.
By becoming a Prem Aware School, teaching staff at Scotton Lingerfield will have a better understanding of the lasting effects of premature birth, will be well placed to identify issues early and have the knowledge to provide the practical and emotional support children may need on their education journey.
“As a school, we are driven to ensure that every child achieves their best possible outcomes. This training was incredibly interesting and has broadened our understanding of the impacts of a pre-term birth. We are a close-knit community and our increased awareness around pre-term births will allow us to provide an extra layer of support for our families.”
“This is great news for families of children born prematurely who attend Scotton Lingerfield Primary School. Our recent survey revealed nine out of 10 parents of children born prematurely felt there was a need for more awareness and understanding in schools. Having trained teachers who know what to look out for and how to help, will make a big difference to children in the classroom. We hope this will inspire other schools to take this step”
Wealden District Council signs Employer with Heart Charter
The Smallest Things are thrilled to announce that Wealden District Council has signed up to The Smallest Things ‘Employer with Heart’ charter by amending its maternity and paternity leave policies, meaning that mothers and fathers who work at the organisation will be entitled to extra paid leave after a premature birth and parents will be supported when returning to work following the birth of a premature baby.
The Employer with Heart charter was launched by The Smallest Things in February 2018, asking employers to extend paid leave for staff whose babies are born premature. Wealden District Council joins a growing list of employers supporting staff following the premature birth of a baby and we’re delighted to add them to our Employer with Heart Hall of Fame.
“We are proud at Wealden to say that we have been working hard on creating an environment where we look after the individual and hope to see these policies make a difference to the future of our workforce.”
“We are delighted that Wealden District Council has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Being a parent on a neonatal unit for weeks, or even months, can be a traumatic experience and shouldn’t be counted as maternity or paternity leave. This important change means that parents who work at Wealden District Council can focus on spending precious time with their premature babies without worrying about work or pay.”
“As an employer Wealden District Council has always put staff health and wellbeing at the top of its agenda and as part of this we had recently introduced a new policy focused on supporting staff that are going through miscarriage, stillbirth, fertility treatment or neonatal care, recognising that this can be an emotionally challenging and physically draining experience. We felt that having a specific policy would ensure that staff are aware of their rights and the support and guidance that is available to them. As part of the policy development we came across the Employer with Heart Charter and decided to sign up to demonstrate our commitment to supporting parents through these difficult circumstances. We are proud to display the logo alongside our bronze Wellbeing at Work Award which we received earlier this year.”
Pardes House Primary School becomes first Jewish Orthodox Prem Aware School
We are delighted to welcome Pardes House Primary School as our latest Prem Aware School! They have met the three requirements by completing the free PRISM e-learning resource to train staff, asking parents and carers if their children were born prematurely as part of the admissions process and requesting feedback from parents on any extra support provided.
Pardes House Primary School becoming a Prem Aware school will make a huge difference to pupils born prematurely and their families as staff will now have an increased understanding of the lasting effects of premature birth, be able to identify issues early and provide the practical and emotional support children may need on their education journey.
“As a mother of a child born prematurely, there was a personal drive to obtain the award. Pardes believes that every pupil matters and every pupil is unique. Our school ethos goes hand in hand with becoming Prem Aware, giving all pupils the tools to grow and building confidence for their future. When I approached our esteemed Head Teacher to pitch the award, there wasn’t even a question that we would go through the training to raise our understanding of preterm births and the risk factors it can bring. It has enabled us to extend our knowledge and ensure we gain vital information; about how a Premie might present themselves in a school environment, how best to support their learning in the classroom and social development in the playground. We will use our knowledge to recognise these needs early as well as support individuals and their families in order to encourage all pupils to achieve their very best.”
“Until listening to one of my teachers talk about her own experiences with premature babies, I had not thought in great depth about this, despite having had prematurely born children in my classes previously. Hearing and learning more about premature babies and the impact of this on physical , emotional, social and learning development opened my eyes to a type of pupil I do not believe we had considered enough previously or even knew we had. For a school that constantly wants to do its best by every child in our care, it has been invaluable for us to learn more and it will impact on our strategies moving forwards.”
Burton-upon-Stather Primary School becomes a Prem Aware School
We are thrilled to welcome Burton-upon-Stather Primary School as our latest Prem Aware School as they have met all three requirements by completing the free PRISM e-learning resource to train staff, asking parents and carers if their children were born prematurely as part of the admissions process and requesting feedback from parents on any extra support provided.
Burton-upon-Stather Primary School will now have a better understanding of the lasting effects of premature birth, be able to identify issues early and provide the practical and emotional support children may need on their education journey, making a huge difference to pupils born prematurely and their families.
“The training was extremely beneficial to raise awareness of prematurity across our school and to provide strategies to support children born prematurely.”
Usworth Colliery Primary School becomes first new Prem Aware School of 2022
We are delighted that Usworth Colliery Primary School in Washington, Tyne and Wear have become our first new Prem Aware school of 2022. This will have a huge impact on children born prematurely who attend Usworth Colliery and who may require additional educational support, now and in future.
Training and Awareness
Usworth Colliery have met all of our Prem Aware requirements to gain the award - accessing the free PRISM e-learning training for staff; asking parents if children were born prematurely as part of their admissions process; and requesting feedback from parents on extra support required or provided.
By becoming a Prem Aware School, Usworth Colliery will be equipped to support their teachers in better understanding how prematurity can affect development, recognise any additional learning needs and support children on their journey through education to achieve their potential.
“We found the training incredibly interesting and informative. As a staff we feel much more equipped to be able to support children who are born prematurely. It has given us a greater awareness of how having a premature child can impact the whole family. We are keen to use the strategies and knowledge we have gained to positively impact the lives of our children. ”
University Hospitals Coventry and Warwickshire NHS Trust signs up to ‘Employer with Heart’ charter
The Smallest Things are thrilled to announce that University Hospitals Coventry and Warwickshire NHS Trust has signed up to our “Employer with Heart’ charter, particularly as they cared for the family of our Trustee, Matt, when his twin sons were born prematurely in 2015.
By amending their maternity and paternity leave policies to entitle their 10, 000 employees to extra paid leave after a premature birth and by pledging to support parents when they return to work after a premature birth, they join our ‘Employer with Heart’ Hall of Fame as the 9th NHS Trust to sign the charter and we warmly welcome them on board.
University Hospitals Coventry and Warwickshire NHS Trust have released a video showing the changes they have made to their Compassionate Leave policies, including premature birth, which you can find here.
“We’re delighted to have just launched a new Compassionate Leave Policy for staff to ensure they feel supported during difficult periods in their lives.
As part of this we have signed the charter Supporting Parents of Premature Babies and we’re proud to have been added to the Employers with a Heart hall of fame alongside eight other NHS Trusts.
By signing this charter we have been able to extend maternity and compassionate leave for mothers of premature babies and their partners.
We hope this new approach will give new parents of premature babies the opportunity to spend valuable time with their little ones and make the new chapters in their lives that little bit easier.”
“My wife and I had twin boys, Sam and Harry, at 25 weeks gestation in 2015 at UHCW. Sam sadly passed away when he was 16 days old and Harry was ventilated for nearly 8 weeks before he was transferred back to a local hospital for another 7 weeks. We have never forgotten the care, compassion and support we got from everyone at UHCW at that time. I have since gone on to become a volunteer Trustee of The Smallest Things and am proud to contribute to our work in raising awareness and improving support for families with premature babies. We all know that time with babies when first born is so precious so employers allowing additional leave and support at this time is really priceless. It is great to know UHCW are making the pledge to become an Employer with Heart to help their staff when they need it and also challenge other organisations to follow this approach. Thank you UHCW.”
“We are delighted that University Hospitals Coventry & Warwickshire NHS Trust has signed up to our ‘Employer with Heart’ charter, particularly as our Trustee Matt has such a special connection with them.
We know that having a premature baby on a neonatal unit can mean caring for your baby under very stressful circumstances, often long term, and this time should not be considered maternity or paternity leave.
Relieving the pressures of work and money on families of premature babies is at the very heart of our ‘Employer with Heart charter’ and now employees of UHCW NHS Trust will not have those worries if they have a premature baby of their own.”
Vita Health Group signs up to ‘Employer with Heart’ charter
The Smallest Things are delighted to announce that Vita Health Group has signed up to our ‘Employer with Heart’ charter by amending their maternity and paternity leave policies to entitle parents who work at their organisation to extra paid leave after a premature birth and committing to support parents when they return to work following a premature birth.
We launched our ‘Employer with Heart’ charter in February 2018 to encourage employers to extend paid leave for employees whose babies are born premature. Vita Health Group joins the growing diverse group of companies supporting staff in this way and we are delighted to welcome to our ‘Employer with Heart’ Hall of Fame.
“As a parent to a premature baby girl I was overjoyed when I was informed that my employer Vita Health Group signed up to the ‘Employer with Heart’ charter. To know that my employer recognises the impact of having a baby prematurely is so valuable. It is an extremely stressful and worrying time. To have the support of your employer will help alleviate some of that stress and worry.”
“We are thrilled that Vita Health Group has signed up to our Employer with Heart charter. Caring for a premature baby on a neonatal unit, often for many stressful weeks and sometimes months, should not be counted as maternity or paternity leave. Thanks to Tia at Vita Health Group advocating for parents of premature babies based on her own experience, their employees will not need to worry about work or money if they have a premature baby of their own.”
“Here at Vita we want to ensure that our employees have the space and support to be able to focus on their new baby and all that a premature arrival entails. This is why we made the decision to sign The Smallest Things ‘Employer With Heart’ Charter. It was a Vita employee who first bought the charter to our attention, and we are so glad that they did! It just goes to show that our underlying belief of engaging with employees and listening to them, really is the right thing to do for everyone.”
The Smallest Things Top Ten of 2021
It has been quite a year and despite the rollercoaster of lockdowns, restrictions and new variants, The Smallest Things have continued to make great strides in promoting the good health of premature babies and their families. Here is what we got up to in 2021….
1. We had over 500 response to our ‘Life After Neonatal Care: A Post Pandemic Survey’
Following on from our last survey in 2017, we were keen to find out how things had changed (or not) for parents and families who had experienced premature birth and neonatal care, particularly considering the pandemic that has impacted so many areas of our lives. We had a fantastic response and appreciate every person who took the time to share their experiences - thank you.
2. We mobilised our community to support the bringing forward of Neonatal Leave and Pay
The introduction of Neonatal Leave and Pay is scheduled for 2023 but The Smallest Things have consistently called on ministers not to delay, particularly in light of the ongoing pandemic. A huge thank you to all of our volunteers and supporters who wrote to their MPs before the budget announcement in March - whilst the implementation of Neonatal Leave and Pay hasn’t yet been brought forward, having it on the radar of a wide range of MPs is an important step.
3. We recruited more schools to our Prem Aware Award scheme
In 2021, we had our first North East and North West schools sign up and continued to grow our Prem Aware Award scheme members in other areas of the country. Watch this space in 2022 as we aim to significantly increase the number of Prem Aware schools - if you work for or know of a school who would be interested, you can find out more here.
4. We rolled out the picnic rugs for our annual event
Despite the upheaval of Covid-19 restrictions throughout 2021, our supporters organised and hosted picnics for our Biggest Picnic Weekend on 25-27 June. These get-togethers, whether big or small, helped raise much needed funds for The Smallest Things and we were delighted to see the fun being had on our behalf!
5. We took on our first employee
Until summer 2021, we were a team of dedicated volunteers who gave our spare time to The Smallest Things. That volunteer team continues but with the added role of Operations Manager which was filled by Fiona in June 2021. We are all excited to see what is in store with us all working together in 2022!
6. We continued to grow our social media following
The Smallest Things now has over 18,500 followers on our Facebook page which not only gives us the opportunity to share news and updates with you but also creates a safe community for families who have experienced premature birth and its ongoing impact. We love to hear your stories and read your comments - if you’re not currently following, please do take a look!
7. We cheered on our first Smallest Things runner
Our supporter Sara ran the Great North Run for The Smallest Things in September - and achieved her personal best at the same time! We are hugely grateful to her for running for us to raise funds to help us carry out our vital work for families of premature babies.
8. We published ‘After NICU 2021: a Post Pandemic Report’
Our latest report gives valuable insight into the long-lasting impact of having a premature baby and life after neonatal care by exploring the complex and problematic issues families can face following premature birth including the impact of the Covid-19 pandemic. The findings we shared in this report illustrate the importance of our work in improving the experiences of families affected by premature birth. You can find the full report here.
9. We watched our Employer with Heart charter go from strength to strength
Thanks equally to long term supporters and new members of our community advocating for increased support for parents of babies and children born prematurely, we have been joined by multiple allies from across the public and private sectors who have signed the Employer with Heart charter and implemented the necessary changes. If you would be interested in taking this forward in your workplace, you can find more information here.
10. We held our first online festival on World Prematurity Day
Our fantastic line-up of speakers brought together many people who are working to make the world a better place for children born prematurely and their families. The festival saw us launch our ‘After NICU 2021 report’, host an Employer with Heart panel, talk about our Prem Aware Award and share a Dads Do NICU discussion group. Recordings of each of the sessions can be found here.
We achieved so much in 2021 and we want to go even further in 2022 - to do that, we need your help. Please support us in our work to improve the lives of families impacted by premature birth by donating today. Every penny really does count.
World Prematurity Day Festival 2021
This year we marked World Prematurity Month by hosting our very first World Prematurity Day Festival!
We have had such positive feedback and thank all our guest speakers, including David Linden MP, for their inspirational words and honest personal stories.
Missed out?
If you weren’t able to join the festival or stay for all four of our sessions don’t worry, recordings of all the sessions are now available!
More to do!
World Prematurity Month might be coming to an end, but we’re here all year continuing to pursure our vision of a better world for premature babies and their families after neonatal care. We hope you'll join us!
If you'd like to take action or find out more, click below:
Released on World Prematurity Day - Life After Neonatal Care: A Post Pandemic Survey Report 2021
New report by The Smallest Things premature baby charity reveals shocking statistics about the long-lasting impact of having a preamture baby and life after neonatal care.
Every year, tens of thousands of babies are born prematurely in the UK and families face the agonising journey of uncertainty and trauma through neonatal intensive care. But parents tell us all the time that their journey does not end when they leave the neonatal unit and we know that the needs of parents and children born prematurely last long after leaving hospital.
Our latest report demonstrates again the complex and wide ranging needs of families and children after premature birth and most importantly gives a voice to parents.
With a staggering 84% of parents calling for more awareness of longer term needs of children born prematurely the report shows how parenting premature babies in a pandemic has left a lasting impact and worries for the future.
Back to school - Gayton Primary Academy becomes Prem Aware
We’re delighted to announce that Gayton Primary Academy in Norfolk has become our latest Prem Aware school, the first to receive the award this academic year.
“Being a mum of two boys, who were both premature, I am always worried about their development and whether they will require any additional educational needs. When I found out about The Smallest Things Charity and that on average, two to three children in every classroom is born prematurely I wanted to speak up. I shared the Prem Aware School Award details with my boys’ school and was so delighted when they contacted me to say they had completed the training and steps to achieve the award.
I can only thank Gayton Primary Academy. This is such a positive step for the school and teaching teams and will really ease the anxieties, parents of premature babies face.”
Running for The Smallest Things!
Sara completed the Great North Run with a personal best!
Sara is our first ever runner for The Smallest Things, running and fundraising to help us to create a better world for premature babies and their families after neonatal care.
Thank you to everyone who donated and supported Sara along the way!
“I absolutely loved it! - I’m tired but good, that’s a PB for me and running for the charity just made it so special. I was teary at the finish line. ”
If you’d like to run and fundraise for The Smallest Things why not get in touch? Drop us a line at hello@thesmallestthings.org
Running not your thing?! That’s okay. There are lots of ways you can support the work of The Smallest Things. Find out more below.
Prem Aware: End of Year Report
We are delighted that despite the ongoing challenges presented to schools by the Covid-19 pandemic, we now have eight schools with Prem Aware status and are seeing a steady stream of enquiries which indicate that Prem Aware will go from strength to strength in the academic year 2021/22.
Prem Aware was created after a The Smallest Things survey showed that nine out of ten parents of children born prematurely felt there was a need for more awareness and understanding in schools. Recommendations also emerged that parents should be encouraged to inform early years and primary school teaching staff of their child’s pre-term birth to support early identification of additional learning needs.
Schools Recently Accredited
The Milford School in Surrey and Langley First School and Whitley Lodge First School in Tyne and Wear have most recently received The Smallest Things Prem Aware accreditation, meeting all three requirements by completing the free PRISM e-learning resource to train staff, asking parents and carers if their children were born prematurely as part of the admissions process and requesting feedback from parents on any extra support provided.
These schools will now have a better understanding of the lasting effects of premature birth, be able to identify issues early and provide the practical and emotional support children may need on their education journey.
“Here at Langley First School, we take pride in listening to our parents and working hand in hand. One of our parents approached us about the award and has been a great help and resource for us to gain this recognition. As SENCo I have been overwhelmed at just how many of our staff were keen to access the training and it is with great pride that as a whole school we feel more knowledgeable and aware on how to support our children who were born prematurely.”
While being born early does not mean a child will have special educational needs, it does increase the chances. With an average of two to three children in every classroom being born early, we hope that the growing awareness of The Smallest Things Prem Aware award will inspire schools across the country to ensure their teachers are aware of potential issues and equipped with strategies on how they can help.
“At Whitley Lodge First School, we feel it is of great importance that information is shared regarding a child’s birth history as we recognise and understand the impact that premature birth can have on the long-term intellectual, social, physical and emotional development of a child. We also acknowledge the additional burden this can place on a child’s family if this is not identified with additional support offered and appropriate strategies applied to help a child’s all-round development.”
“Becoming a Prem Aware School is hugely important for us on a personal level as we have had children who were born significantly preterm and to a certain extent have been ‘finding our way in the dark’ due to us not specifically requesting this information at the point of admission. We now have a greater oversight of any children joining us that may have associated challenges and the training to be able to remove or address these barriers specifically and as part of our Quality First Teaching Strategy.”
Parents
Would you like to talk to your child’s school about our Prem Aware Award? Email us at premaware@thesmallestthings.org or send the school a link to this page, asking them to download the guidance pack below.
Birmingham Women’s and Children’s NHS Trust signs up to ‘Employer with Heart’ Charter
The Smallest Things are thrilled to announce that Birmingham Women’s and Children’s NHS Foundation Trust, which employs 6500 staff, has signed up to The Smallest Things ‘Employer with Heart’ charter by amending its maternity and paternity leave policies, meaning that mothers and fathers who work at the organisation will be entitled to extra paid leave after a premature birth and parents will be supported when returning to work following the birth of a premature baby.
The Employer with Heart charter was launched by The Smallest Things in February 2018, asking employers to extend paid leave for staff whose babies are born premature. Birmingham Women’s and Children’s NHS Foundation Trust joins a growing list of employers supporting staff following the premature birth of a baby and we’re delighted to add them to our Employer with Heart Hall of Fame.
“We are delighted that Birmingham Women’s and Children’s NHS Foundation Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This important change means that parents who work at Birmingham Women’s and Children’s NHS Foundation Trust can focus on spending precious time with their premature babies without worrying about work or pay.”
“With 37,000 babies born prematurely every year and as a Trust that cares for so many families in this position, we understand how difficult and worrying it can be. We want to take any additional anxiety, including financial, away from colleagues so they can fully concentrate on their baby and being a family.”
North Fawdon Primary School becomes North East's first Prem Aware School
The Smallest Things premature baby charity names North Fawdon Primary School as North East's first Prem Aware School!
We are delighed that North Fawdon Primary School in Newcastle, which is part of SMART multi-academy trust, has become a Prem Aware school. This will make such a difference to children born prematurely at North Fawdon who may require additional educational support.
Training and Awareness
North Fowdon have met all three of our Prem Aware requirements to gain the award - accessing the free PRISM e-learning training for staff; asking parents if children were born prematurely as part of their admissions process; and requesting feedback from parents on extra support required or provided.
By becoming a Prem Aware School, teaching staff at North Fawdon will have a better understanding of the lasting effects of premature birth, will be well placed to identify issues early and have the knowlege to provide the practical and emotional support children may need on their education journey.
“The Prism awareness training raised our understanding of preterm birth, and the risk factors it can bring. It has enabled us to extend our knowledge and ensure we gain vital information about preterm birth history. We use our knowledge to recognise needs early, support individuals and their families and encourage all pupils to achieve their very best.”
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“As a parent it is incredibly reassuring to know that a school has some in-depth knowledge on the impact of prematurity. The effects of severe prematurity can have such an impact on a child’s development particularly in the early stages of school and knowing that North Fawdon practitioners are skilled to provide support and strategies to support this is fundamental in my child’s journey throughout school!”
Our Lady of Mount Carmel becomes North West's first Prem Aware School
Our Lady of Mount Carmel RC Primary School in Ashton-under-Lyne, is the first Prem Aware school in the North West, meeting all three Prem Aware requirements: completing the free PRISM e-learning resource to train staff; asking parents and cares if their children were born prematurely as part of the admissions process; and requesting feedback from parents on any extra support provided.
A Smallest Things survey revealed nine out of 10 parents of children born prematurely felt there was a need for more awareness and understanding in schools.
In these challenging times we are delighted that schools, like Our Lady of Mount Carmel RC Primary School, are taking steps to increase knowlege and understanding of the lasting effects of premature birth. Having trained teachers who know what to look out for and how to help will make a big difference to children in the classroom. We hope this will inspire other schools to take these steps to become Prem Aware.
“Completing the Prism awareness training has highlighted the need to gather as much information as possible about preterm births. This will enable us to identify early interventions that may be required to improve the life chances of those children born prematurely.””
South Wigston announced as UK’s first Prem Aware School
We are delighted to name South Wigston High School as our very first Prem Aware School! The school has achieved all three pledges to gain the award: accessing free PRISM e-learning to train staff; asking parents if their children were born prematurely within the admissions process; and requesting feedback from parents on any extra support provided.
“This is great news for families of children born prematurely who attend South Wigston High School. Our survey revealed nine out of 10 parents of children born prematurely felt more awareness and understanding in schools was needed. Having trained teachers who know what to look out for and how to help, will make a big difference to children in the classroom. We hope South Wigston will inspire other schools to follow in their footsteps.”
“We are really proud to be recognised as the first Prem Aware School by The Smallest Things premature baby charity. It’s important to us that our teachers can support all students in the classroom and that we work closely with families to provide any extra help they need. The free online PRISM training was an excellent mix of theory and practical solutions that has better equipped our staff to support children born prematurely.”
The Smallest Things launches new Prematurity Awareness Award for schools
Earlier this year you shared your experiences of SEN support for children born pre-term. Your response was clear: 90% of you told us there should be more awareness and understanding of the educational needs of children born preterm.
We are delighted to launch The Smallest Things Prem Aware School Award! We’ve worked with the University of Leicester to make its excellent free training resource part of the application process and are asking schools to make three straightforward pledges. By doing so they will have a better understanding of the lasting effects of premature birth, be able to identify issues early and provide the practical and emotional support children may need on their education journey.
New report into impact of
Covid-19 finds mums and dads on parental leave need
more support
“We welcome the Government’s recognition that special neonatal leave and pay should be introduced for all parents who find themselves in this situation. The Government plans to include provisions in its forthcoming Employment Bill to introduce this reform in 2023. In advance of the planned delivery of neonatal leave and pay in 2023, the Government should pilot the introduction of these reforms for those affected by the Covid-19 outbreak. If a success, the date of the general introduction of these measures could be brought forward.”
We were delighted to see that the House of Commons Petitions Committee has included our evidence and recommendations in its report on the impact of Covid-19 on parental leave, published on 6 July 2020. The Smallest Things has been campaigning for extended paid leave for parents of premature babies since 2014 and has been asking the government to bring forward its planned Neonatal Leave and Pay legislation from 2023.
Thanks to the Petitions Committee for listening to us and including the unique needs of families of premature babies in this compelling and detailed report. We know that being a parent on the neonatal unit and beyond is a traumatic experience during ‘normal’ times and the current pandemic has exacerbated those feelings of fear, isolation and anxiety, as well as making the return to work even more difficult, or impossible.
Write to your MP!
Parent voices have power. And that’s why we’re asking you to write to your MP to ask them to support parents facing the immediate trauma and long-term impact of premature birth by urging the government to bring forward its planned Neonatal Leave and Pay legislation. You can download a template email below or write your own. If you’re not sure how to get in touch with your MP, you’ll find their contact details at theyworkforyou.com
We did it!
Neonatal leave
and pay law
After years of campaigning from the heart, we are delighted by the news in the Budget 2020 that parents of premature or poorly babies will receive up to 12 weeks’ extra leave and pay. Thank you to all our passionate supporters and volunteers for sharing their experiences and signing our petition. This change will make a huge difference to families, which is why we’re disappointed it won’t come into effect until April 2023. We’ll be urging the government to move faster and ensure the new entitlement applies to everyone, including the self-employed.
Parents’ experience
of SEN support for children born preterm
Evidence tells us that children born premature are at higher risk of special educational needs than children born at term, but we’d like to hear from you! The Smallest Things have been gathering the views of parents and detailing their experiences of Special Educational Needs (SEN) support for children born early.
You’ve been sharing your experiences of the special educational needs and support for children born preterm.
Here’s what you’ve told us so far...
✏️ More than 90% of parents told us they think there should be more awareness and understanding of the educational needs of children born preterm.
✏️And just over a third of parents feel their child’s educational needs are being met….
📚 Not shared your experiences yet? There’s still time. Take our short survey here | http://surveymonkey.com/r/X3BT65K
19 ways The Smallest Things made a big impact in 2019
As we make big plans for 2020, we’ve also taken a moment to look back at what our tiny charity achieved last year – all thanks to your support and donations.
Take a look at everything we’ve achieved together and find out how you can support The Smallest Things in 2020….
Cottsway becomes first housing association in the UK to gain the Employer with Heart charter.
“We understand that becoming a parent to a premature baby can mean waiting weeks before you can bring your baby home from hospital and is an extremely distressing time.
“By extending our maternity and paternity leave policies we hope our employees will be able
to concentrate on spending precious time bonding with their new born rather
than juggling work and home commitments.
“We’re delighted to be recognised as an Employer with Heart and extremely proud to be the first
housing associated to have been accredited with the charter.”Clare Sellman (pictured) head of corporate services