Isla’s Journey has seen sustained growth despite of the COVID-19 pandemic lockdown, and our provisions were needed more than ever. Families were in crisis from shielding isolation or only one parent being allowed a maximum of two hours a day visiting their baby on the neonatal unit. We saw unprecedented need for our services to fill a huge gap in NHS and Local Authority provision, a gap which we successfully filled with the introduction of our parent meetings and well-being events.
Prior to COVID-19, all our support was done face to face either on a neonatal unit or in various spaces around the region. This is no longer a viable or safe option for our families, especially as they have vulnerable children and NHS visiting restrictions are still in place for neonatal units.
In response to the national lockdown, all our provision was moved online to Zoom, Skype or via telephone calls. Our families are suffering through isolation but are fearful of entering areas which people without shielding or without vulnerable children attend. We have seen a gap in the care we offer, which could be filled in response to COVID-19.
For our services to resume to a safe level of normal, our board of trustees are proposing that Isla’s Journey launches 'Neonatal Respite' centre in the UK- something that has been proposed in northern England but we would like to offer the same for London and the south east. The Nurture Centre would focus on parent and infant mental health, and child development of children who have had a tragically difficult start in life, many of whom are disabled.
The centre, will not only support a large community in desperate need of mental health and child development support, it will reduce isolation, social deprivation and continue to fill gaps the NHS cannot fill. The centre will also support our fundraising efforts.
With babies being saved as early as 21+6 weeks, weighing as little as 500 grams or needing life-saving treatment which several years ago did not exist, the trauma these families face, and the ongoing needs of these children can last years. In some cases, a lifetime.
More than 3,500 babies require neonatal care in the North East of England. Our main objectives provide care packs to over 40 neonatal units and their associates transfer teams. Annual admissions for these units are well into the thousands and feedback has been all positive.
We provide and ensure a robust service is offered to every single family which refers into our care. Our care spans from the infant up to the grandparent and make sure everyone featuring in the family unit can access support. We have particular focus on sibling mental health and inclusion with all our projects.
When the COVID-19 lockdown struck the UK in March 2020, many of our families were shielded, and families delivering babies who needed neonatal care were allowed 2-5 hours a day to visit their children. At its peak only one parent was allowed per day and rules were strict. These visiting measures are still in place in multiple hospital trusts.
The long-term damage to these families, if not supported quickly and in a timely manner could be devastating.
Many trusts are already seeing an increased need in counselling support, peer support, occupational therapy and attachment concerns as a result of this. As a charity we are having many families contacting us for support and due to the stress the NHS is already under they are unable to complete referrals at this stage.
Our provision pre-COVID-19 was done face to face, and all community provision was provided in various hubs and centres across the region. To keep families safe during COVID-19 and centralise our work for the safety of this community, Isla’s journey is now looking to locate in a centralised space.
Upon feedback with families it was clear that many would benefit from safe space in which they can heal, learn and grow with other families. The space would be used to access peer support and counselling, spend time with other neonatal families, learn more about various additional needs, or learn useful skills to help them along their journey. This would be solely used for neonatal families and associates.
This includes bereaved parents, who have said if they had somewhere to go after a counselling session to unwind, they would.
This centre would allow families to access provision like never before, they could attend counselling and peer support, neonatal yoga and baby sign language, occupational therapy drop in clinics and more, our specialist support groups can all be in one place.
Offering this community of families respite, a safe -haven, a place where parents / carers, siblings, grandparents and infants can get holistic support for all of their needs is something that would benefit so many families in the community.
Our families suffer from PTSD, postnatal depression, anxiety, suicidal ideation and attempts, OCD, panic disorders and attachment issues to name but a few. A dedicated respite centre could make the difference to a family's life.
The children we care for can have a variation of needs such as quadriplegic Cerebral Palsy, tracheostomys, genetic conditions, Down Syndrome, respiratory conditions such as Chronic Lung Disease, and developmental delays or autism. Allowing them to socialise at an early age would mean a head start in communication and social skills- with parents being able to connect with their families too. For many the thought of not being alone in a world that has felt isolation for so long this could make a huge difference.