24/7 Complex Child Supported In Challenging Family Environment
Daniel is four years old and he has been supported by Voyage Specialist Healthcare since July 2016.
A number of complications during his birth meant that Daniel was left with cerebral palsy and is now oxygen dependent via a managed airway. Daniel also has a gastrostomy, is peg fed/medication and requires nebulisers.
We took over Daniel’s care package while he was in hospital. Our Paediatric Clinical Case Manager trained our staff with the support of the hospital clinical team, to ensure a timely discharge.
Daniel could not be allowed home until there was 24/7 care package in place as there was a question around Mum’s ability to cope and provide a safe home environment.
Daniel is one of five children. Our responsibility is to fully support Daniel allowing Mum to care for the rest of the children.
Mum suffers from depression and has an unstable and chaotic lifestyle – because of this she finds it hard to trust other people, in particular Daniel’s carers. Mum’s vulnerability and her on-going anxieties has led to a refusal and reluctance to accept help that is offered from the health professionals, and a challenging working environment for our care team.
Initially we faced many challenges due to Daniel’s Mum’s reluctance to accept the care package. She did not agree that Daniel required 24/7 care and wanted to look after him on her own. The package by request of Mum was reduced to shorter day hours and overnight support, however, this was reverted back to 24/7 after a week, again by request of Mum after she realised she could not cope. Safeguarding referrals have and continue to be put in place due to concerns about domestic violence and drug use in Daniel’s home.
How did we help?
We have continually worked with Daniel’s carers, his family and the Multi-Disciplinary teams to ensure his care package runs smoothly. We also liaise with Daniel’s school on a regular basis and have developed work tools to allow everyone involved to share in a more harmonised and collaborative approach when supporting Daniel.
Due to the domestic situation and family dynamics, Daniel’s care package will always be challenging, but he is now well looked after and his number of hospital admissions have dramatically reduced.
The quality and continuity of our care has improved Daniel’s life expectancy. His paediatric consultant had originally predicted that he would pass away before his 4th birthday, however, due to our care and support he now attends school and social outings and lives a more productive and fulfilling life.
Daniel is still with us, his consultant believes this is due to the care package he now has in place.