Jayden was the cheekiest lad you ever did meet.  He had the most wonderful smile and loved nothing more than grabbing my stethoscope from around my neck every time I got close, and giving one of his siblings a playful prod and grinning from ear to ear when they caught him.  Jayden had significant disabilities from a young age due to a condition which prevents the fluid that bathes the brain from flowing properly. He had stiff muscles that were painful at times and required feeding through a tube into his stomach. He struggled to communicate, to swallow his secretions and required a wheelchair to move around.  His muscle tightness led to his bones twisting out of shape, especially his spine which made breathing hard and caused him to be sick, sometimes several times per day. He was well supported by a large, loving family, a team of dedicated school teachers, school and community nurses, a community paediatrician who oversaw his care and a team of doctors at the hospital who managed his various complex medical problems.  The job of me and the specialist palliative care team was to help reduce his vomiting and pain which we did using comfort measures, manging his anxiety, and working alongside therapists to manage his positioning and breathing.  We talked with his family over several home visits about what might happen if Jayden’s health did decline.  His mother who cared for him day in and day out since birth, with no carer support, knew that she wanted him to be at home with her and she would care for him until the end….just as she had done until now.  Despite all of the challenges he faced, Jayden never moaned, always gave freely of his warmth and sense of humour, and we all knew that if he could speak to us….he would tell us what a joy filled life he had.  Over time and even with the intense holistic support being provided, his condition deteriorated and he became increasingly unwell with chest infections. His lungs were compressed from his spine curvature and we reached the decision with the family and his spinal surgeon that operating would carry too much risk.  He became increasingly challenging to care for at home and school.  As a team we had to work together, holding regular meetings with school staff/nurses/hospital teams/social workers and the children’s hospice Naomi House who were providing support.  We had to make sure we all understood where Jayden was in his health journey, and make sure we all used our strengths and skills to support this family effectively.  Despite coming from different organisations, across different disciplines, it was only working together to understand and meet the needs of Jayden and his family, that we would be able to ensure the last stages of Jayden’s life were as positive and profound as the rest.
 
As Jayden became more unwell, he required increasingly intense support at home.  This was when the cracks in the palliative care provision around Jayden became all too visible. During the school term Jayden had support for his complex health needs at school and the family had respite whilst he was there.  However school were struggling with managing his vomiting, episodes of going blue with breathing changes and needed more clinical support from trained carers and confident nursing staff who could meet his needs. As the autumn term ended, this coincided with Jayden entering the end of life phase of his illness.  Being the school holidays, care fell to the community and hospital teams. His health was too unstable for regular council respite providers to manage.  The community nursing and therapies teams were facing increased numbers of patients with complex needs and acuity of care, alongside rota shortages and just could not provide 24/7 care at the end of Jayden’s life at home.  There was no medical support provision for the family or nursing staff out of hours and with shortage of specialist palliative care services in the hospital the Christmas bank holidays it meant this family were faced with managing his care needs without the 24/7 support from highly skilled nursing and medical team that Jayden needed……. Team members did offer to go over and above but this quickly became unsustainable and it became clear that services could not provide safe end of life care at home. 
 
I had to sit down with Jayden’s mother and tell her that sadly we could not meet her only wish for her dying child… to be cared for in the home where she had cared for him all her life.  It broke my heart.  We arranged prompt transfer to the regional children’s hospice who had already been providing the family with support.  The family quickly settled into a new environment. They were all able to stay and received emotional and spiritual support, meals and rooms provided, and Jayden was able to be cared for by a care and medical team who were confident managing his needs.  The stay wasn’t easy, Jayden developed seizures and his breathing worsened requiring us to escalate his medical treatment rapidly.  It remained very hard for his mother, not being able to be in their family home, saddened and frustrated that her role as provider, carer, nurse, comforter was not able to be fulfilled as she would have liked. However, Jayden died peacefully a few weeks later, surrounded by his family, supported by the hospice team.
 
Teams across Wessex support young people like Jayden day in day out as well as children with a variety of conditions, from neonates born with severe congenital abnormalities, children with cardiac anomalies, those with cancer.  We know that you only get one chance to get care right for these children and young adults, especially caring for them at the end of life.  We want to get that one chance right and keep doing it week in week out.   That is what this network is about….
 
Our mission is to ensure children and young adults with life limiting and life-threatening conditions across Wessex have access to equitable, sustainable, high quality, palliative, and end of life care. 

​Thanks for your interest and please do subscribe by clicking on the button to know more. ​