Case Study 1
To protect the identity of this child she will be known as Hope. Hope was born with Down’s syndrome and apart from having a number of chest infections she was reaching her milestones with a minimum amount of development delay. Unfortunately when Hope was 18th months old she suffered a respiratory arrest which resulted in a catastrophic personal injury. Hope sustained extensive nerve damage to her Trachea on intubation which resulted in Tracheal malasia. As a result of her injury Hope has severe development delay, Quadriplegia and Neuropathic bladder.
Following numerous attempts to extubate Hope it was decided to form a tracheostomy as it became evident from the degree of Tracheal Malasia present that it was unlikely to wean Hope from her ventilator. A formation of a tracheostomy would enable Hope to be ventilated longer term and be less traumatic for her than being nasally intubated. Hope was ventilated via BIPAP. At this stage, Hope was struggling to take any independent breathes and was synchronising with the ventilator.
Urodynamic studies showed that Hope had a neuropathic bladder and without bladder augmentation and formation of a mitrofonoff she would be incontinent. This is major surgery and very distressing for the family. It was decided that this would be reviewed when Hope was aged 3.
Hope initially had oesophageal reflux and had difficulty tolerating bolus feeds and required a continuous feed over 20 hours. With medication, positioning and close working between the dietician, speech and language therapists and the case manager from Focused Healthcare, Hope was eventually able to tolerate bolus feeds.
Hope spent five months in a Specialist Paediatric Intensive Care Unit before being transferred to her local hospital. The litigation process had started and we had been assigned as case managers to assess and coordinate Hope’s discharge from hospital to home. It is the knowledge and skill of the paediatric case manager that made this case successful. The ability to know how to look after a technically dependent child in the community, having the understanding of how this effects all family members and ensuring their needs are met including siblings and grandparents, understanding the dilemmas parents are facing on a daily ongoing basis, being their advocate and voice in the many multi disciplinary professionals meetings is paramount when managing such a complex case.
Hope spent a further three months in hospital before being discharged home. Initially Hope and her family a brother aged five and her parents were discharged to a privately rented property. This was organised by the case manager as adaptations to the family home were going to take some time. In this case the family home was suitable for adaption due to its size and location but from experience this is not always the case. An architect was assigned from our partner company who are specialist in home adaptations for the disabled and deal with planning permission, design etc.
Hope was clearly going to require a high level of nursing care. It was agreed that Hope would receive a 20 hour per day care package provided by Focused Healthcare and funded through an interim amount of money from the litigation process. Part of the case manager’s role is to provide a care assessment. The national assessment framework for children and young people should be used for the case assessment, however it is fair to say that this is an NHS tool and is often joint funded with local authority. For Hope this came out at five nine hour nights and a further 20 hour per week from local authority. The difference was made up by the interim payment and would be settled overall in court.
Some of the many attributes of Focused Healthcare is the vast knowledge and experience of the Managing Director who has daily input into all cases, along with the bespoke service offered and the extensive data base of Paediatric Carers and Nurses.
It was essential for Hope and her family that we attended all professionals meetings. During this time it was agreed that the care package would start whilst Hope was in her local hospital. Hope was assigned a Practice Facilitator from Focused Healthcare who met with Hope and her parents, she devised individual care plans for the nurses and carers to follow, to ensure effective record keeping therefore delivering efficient, transparent information. All her care plans were individualised to include her daily routine, her likes and dislikes and to take into consideration the way Hope and her family like tasks such as bath time to be carried out. Play and stimulation was a large part of Hope’s care this includes everything from sensory, music therapy and the involvement of her brother who particularly liked to be involved at bath time. All care is carried out based on the child and families needs and wishes and implemented in conjunction with the multi disciplinary team involved.
Hope’s conditions cover many paediatric specialities such us Urology, Neurology, Respiratory, ENT, and Gastroenterology to name but a few as well as input from therapists, all of whom may at times have differing opinions. This can be daunting and frustrating for families. It is imperative that we work closely with professionals to ensure Hope and her family have the appropriate level of support to ensure they live a fulfilling and productive life at home. Healthcare technology today has become advanced with the availability of portable ventilators and monitoring equipment. Children may attend school with their peers and make good progress with the appropriate balance between educational support and healthcare supervision. The key is the careful and thorough assessment of individual needs and the implementation of a bespoke tailored home care package provided to support and facilitate a fulfilling life at home and in other community settings.
Focused Healthcare have a team of Practice Facilitators, Nurses and Healthcare support workers all of whom have experience with children or have a paediatric qualification to provide the individualised care packages at home. These may include night time support to monitor and carry out care, daytime support to enable children to attend school or respite to allow parents a break from caring for their child. Allowing carers into the family home can have psychological effects on families and should be handled sensitively at all times promoting well being, respecting privacy dignity and values, all within the philosophy of Focused Healthcare in making a difference.
Case Study 2
To protect the identity of this child he will be known as Hassan.
Here at Focused Healthcare we pride ourselves in our ability to offer bespoke care packages that will meet the individual needs of the child and family.
Hassan is a 6 year old little boy with challenging behaviour and moderate learning difficulties. Fayda is a single mother with sickle cell disease and has very little family support. Children with Disabilities Team asked Focused Healthcare to provide 10hrs of care support per week that could be used by Fayda, to have respite and attend her sickle cell clinic appointments.
It soon become evident that Fayda was neglecting her own health and had had a number of episodes of sickle cell crisis that had led her to require hospital admission. Due to Fayda’s minimal family support network, this meant she had to take Hassan with her.
An urgent professional meeting was called and Focused Healthcare were asked if and how we could help. Having had experience of difficult family dynamic situations, Focused Healthcare were in a position to increase care to 24hrs at very short notice with carers that knew Hassan. This prevented him going into emergency foster placement or a residential home, both of which would have been distressing for Hassan and stressful for Fayda. Our ability to do this was the expertise of our oncall team who have access to a paediatric nurse 24hrs who would take the lead in implementing the increased hours. Knowing Fayda and Hassan from home visits they understood the predicament she was in.
To date Fayda has had five episodes of sickles cell crisis. All have occurred out of working hours and 24hr care has been implemented within two hours notice. Having this facility for Fayda has given her reassurance that Hassan is being cared for at home and by carers that he knows and feels secure with. In turn this has taken a stressful situation away from her and in doing so has improved her health. Fayda has also been able to use Focused Healthcare as a support and being her advocate Focused Healthcare has sign posted her to other resources and support groups.