Maya’s story – Bespoke paediatric end of life care
Overview
Prior to Maya’s care with Thornbury Community Services (TCS), she was receiving 2:1 healthcare assistant day support at home from another care agency to manage her rare genetic disorder, Batten disease, also known as neuronal ceroid lipofuscinoses or NCLs.
After encountering some challenges with their care arrangements, the family contacted the social care and healthcare commissioner to seek support for their daughter’s complex requirements.
Following the family’s request to look for another care provider, Ealing Clinical Commissioning Group (CCG), now called Northwest London Integrated Care Board (ICB), approached TCS to arrange a bespoke end of life care at home package for Maya.
Snapshot
Our approach to Maya’s care
To ensure a person-centred experience for Maya and her family, we implemented bespoke elements to her care package, prioritising comfort, communication and regular family involvement.
Care mobilised within 7 days
Following an emotional and challenging experience with their previous care provider, we rapidly mobilised a care at home package within 7 days to ensure Maya and her family began to receive the appropriate care and support as soon as possible.
As part of Maya’s care package, we recruited an expert team of nurses and healthcare assistants (HCAs) to provide her care. We assigned the family a dedicated care coordinator to oversee the operational running of her care and a specialist clinical lead to manage Maya’s care plan, so she received person-centred care at home.
Upskilling our healthcare professionals
Due to Maya’s condition advancing towards her end of life, she required specific clinical interventions, including suctioning, administering medication, syringe drivers, and oxygen management.
Our TCS nurses and HCAs completed upskilling training to enable them to support Maya and her bespoke condition. Our team also attended several training sessions delivered by Great Ormond Street Hospital, where Maya’s mother, Kate, also joined so she could have a good understanding of the clinical interventions provided to her daughter.
Person-centred care and support
As an ‘Outstanding’ CQC-rated care at home provider, we are committed to delivering exceptional care at home, no matter how complex an individual’s care condition or their requirements. This was no different for Maya and her bespoke care needs.
We regularly involved Maya’s family in her care to ensure she had a person-centred experience and continuity of care during her time with TCS. This enabled a shared understanding of the support and clinical interventions provided so that when the time came, Maya could pass peacefully and comfortably in the most dignified way, surrounded by her loving mother, father and brother.
Regular communication with the family
Our clinical lead, operations team and healthcare professionals regularly spoke with the family to provide updates and conduct check-ins to ensure their home remained a safe and secure environment for Maya throughout her care journey with TCS.
In addition to supporting Maya’s care needs, we enabled the family to spend quality time with their son. As part of this, we supported Maya’s mother and father to take their son to Spain on his first holiday. During their trip away, we continued providing care to Maya at home, whilst updating the family of any changes during their time away.
The impact of bespoke home care for Maya and her family
As Maya received paediatric end-of-life care, our team was deeply committed to making every moment count. We focused on giving Maya and her family the highest level of support, helping them create lasting memories and enjoy meaningful time together in the comfort of their home.
Enabled a dignified and peaceful passing in her family home
By implementing a person-centred approach to Maya’s care and continuous communication with her family, we supported Maya to pass peacefully in her family home, where she was surrounded by her family and dedicated team of healthcare professionals.
Encouraged the family to have quality time with Maya
It was important for the family to have special time with Maya as she reached her end of life. We focused on giving the family space and time together. Our team arranged for a double bed to be brought into Maya’s home so her family could spend precious time with her and be by her side.
Supported the family to go on holiday while Maya received bespoke care at home
The family wanted a holiday away as their youngest child had never been abroad. So we made this possible by ensuring our team continued to support Maya and deliver exceptional care in her family home whilst providing necessary updates to her parents during their time away.
Developed meaningful and professional relationships with the family
During their time with TCS, our dedicated nurses, HCAs, clinical lead, and operations team developed meaningful relationships with Maya and her family. These relationships created a peaceful and calm environment, ensuring Maya always received exceptional care.
Outcome
After Maya’s care package came to an end, her mother Kate reflected on the journey the family shared with TCS. She spoke about how the support they received allowed their family to spend precious, meaningful time together in the comfort of their family home.
Discover how our care at home services can support you
For more information about our complex care at home service and how we can support adults and children to receive person-centered care at home, please reach out to our Business Manager, Matt or complete the enquiry form below.
Matt Shea
Business Manager
Matt builds trusted partnerships with integrated care boards, health boards, case managers and local authorities across England and Wales to deliver specialist home care for people with complex clinical needs, ensuring every individual receives exceptional, person-centred support at home.
Arrange care at home with Thornbury Community Services
To discuss our care at home services and how we can specifically support you, click the button below to start your enquiry.
