Community Corner
Leo's - Our regular spotlight on a grassroots VCSE organisation in the perinatal mental health sector
What is the name of your organisation and when did you set up?
Leo's, The organisation was set up in 2018
Where are you based?
North East England, we cover Redcar & Cleveland, Middlesbrough, Stockton on Tees, Hartlepool and Darlington.
What services do you offer and who do you support?
Leo's offer Peer support, child development, trauma therapies to parents who have been in NICU and experienced baby loss.
Leo's provides specialist, lived experience, trauma informed support for families affected by neonatal care, pregnancy loss, baby loss and high risk pregnancy across Teesside. Alongside this we provide specialist compassionate support to new mums in the BAME community in Middlesborough. Our team combines professional expertise with lived experience to deliver compassionate peer support, counselling, therapeutic interventions and emotional wellbeing support.
What prompted you to set up in the first place?
Leo’s Story
In 2015, my son Leo entered this world at just 24 weeks gestation, and unbeknown to him, saving the life of his twin brother, Oska and me, his mum, Lottie.
After four long hours, waiting to meet my little boy, I was finally able to go see him in the NICU. The doors of intensive care opened, and there he was, the most beautiful little boy in the whole world. I fell in love instantly. Our first hello would be our goodbye. Our first cuddle would be our last together in this world.
We were told he could fight no more, and that they had done all they could to save him, but he was just so very sick.
We made the heart-breaking decision to turn off his life support and let him go peacefully. He slipped away and grew his wings in the early hours after he was placed in my arms. He changed our hearts irrevocably. In those brief moments we shared together. I can’t explain the lessons he taught me, the love I felt and the overwhelming desire as his mum to make sure his life meant something.
Days later a consultant spoke to us whilst I was still pregnant with his twin, Oska, because every minute, every hour inside gave him a stronger chance of survival.
He sat us down and said “Sometimes, the sickest twin knows it’s poorly, and makes the most noble sacrifice to save the other”
That’s what our boy did. He became Oska’s guardian angel and saved his life. I truly believe that. He saved my life too.
I am so honoured to be the mum of someone so brave, so selfless. He is my greatest hero.
This here, is his legacy.
Lottie x
Do you run or plan to develop any services that reflect specific needs within your community?
We run lived experience based therapies and peer support to families within our neonatal and baby loss community, we also provide specialist community groups that are safe (clean and as many germ free spaces as possible!) and supportive to build friendships
What do you find most rewarding about running your organisation?
Helping a family heal.
What have you found to be the benefits of being involved in the Hearts & Minds community?
I love knowing we are part of a collective of passionate people in this space - it makes me feel so less isolated!
If you could go back and give yourself one piece of advice when starting up, what would it be?
Slow down, and believe in yourself.
If money and resources were no issue and you could wave a magic wand and change any part of your service - what would you change and why?
I would increase our peer support and trauma therapies, for me, we need the combination of lived experience and specialist trauma work to help a family help heal from their experience.
If you could give all parents / carers a super power, what would that be and why?
The ability to give themselves grace on the really tough days
Is there anything about your service that makes it stand out from the crowd or offers something a little bit different?
Everyone here as lived experience, but we have also invested significantly in training for our team so we can offer a dual approach. for example, our peer support team in our NICU services are also child development play practitioners, NBO practitioners, forest school leads, bath baby leads, yoga and massage trained so they can bring a wealth of experience into a session. We also bring neuroscience and nervous system work into our care to deliver cutting edge work that can help heal through the science behind our behaviours. We pride ourselves on lived experience and all of our team and trustee board, even our therapists have it.
What do you find the most challenging thing about running a PMH VCSE service at the moment? I have never known the levels of distress and trauma we see, the damage done to parents by healthcare professionals and their actions, the lack of funding, if I hear that neonatal or baby loss is niche again I may implode! Working with the NHS is deeply challenging as we are often labelled as 'just parents', or there's an expectation from Local Authorities to deliver without payment or contract in place....
What keeps you going when things get tough?
I think of my team, and my kids, and the journey I am on.
What issues do you feel are currently most important to address within our sector?
funding (obviously) but if possible, the continued hierarchy of professional snobbery when lived experience leads an organisation.
Anything you’d like to tell us about your service or organisation? Any recent wins or things to celebrate?
We launched our NICU Neuroscience project this year and it unpicks the neuroscience behind all the parental experiences in the NICU and for those with neonatal unit specific loss, from matrescence and patrescence, to how memories are formed under stress, what our autonomic nervous system goes through, the role of our gut, the vagus nerve, PTSD, and we look in depth at loss and the attachment circuits in a maternal brain.
Thank you to Lottie for sharing these insights on behalf of Leo's. You can find out more about the organisation by visiting: leosneonatal.org or contacting lottie@leosneonatal.org
