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Enabling people to live as individually and
independently as possible and supporting
them to achieve their goals and aspirations

Case Studies

Paediatric Case Study A

Following a riding accident five years ago, RT sustained a C4/C5 complete spinal injury.

Our involvement with the care and support of RT began while she was an inpatient at the spinal unit where she was admitted for 6 months. Our Clinical Service Manager met RT and her family on several occasions in order to fully assess and plan the care and support that she would need. It was very important that our staff were fully trained in every aspect of RT’s clinical care needs , as following discharge home our care and support staff would be responsible for all of her needs. Enhanced clinical competencies were needed for tracheostomy care, Bi-pap supported breathing, suction, bladder washouts and bowel management. The emergency protocol was written by her spinal consultant, and the specialist liaison nurse at the hospital attended our clinical training sessions to ensure that all procedures were in line with RT’s unique needs. RT had a large part to play in deciding which members of staff she wanted to provide her care and support as she needed to have confidence in them in order to feel safe away from the spinal unit. The discharge planning stage of our involvement with RT was a 12 week process of meetings, staff identification, training, care planning and risk assessments with full involvement from the spinal unit team, community nurse, dietitian, physiotherapist, GP and RT and her parents.

Over the five years of care and support we have provided to RT, there have been many revisions and amendments to the care plan and clinical tasks involved in our care and support all managed by our Clinical Service Manager.

In addition to her ongoing care needs, we have been cognisant of the need to allow RT to develop and grow. The transition from paediatric to adult care can be traumatic time for clients. Thankfully four members of care staff have remained constant in the care of RT and have seen her progress from an inpatient in the spinal unit to preparing for university this year. We will be supporting RT clinically on a day to day basis at university and also we have recruited a new member of staff to be a learning support assistant during lectures. The preparation stage for RT to attend university in September this year has involved several planning meetings with university staff, the Head of Year and the Pastoral Care Liaison team. The Clinical Services Manager has prepared detailed Safer People Handling Risk Assessments and Emergency Procedures for the periods of time RT will be in the University Campus, all of which have been agreed by the University and RT herself. Our Clinical Service Manager has met with the medical staff at the University with RT and her parents to ensure they are aware of the clinical input needed in case of emergency. As a result of all parties working in conjunction with RT, our Care Pathway processes have proved to be successful in providing the necessary care and support for RT to continue with her life through her teenage years and progression into adulthood and a university life.

Paediatric Case Study B

AB is a 3 year old boy with cerebral palsy, limited communication, difficulty in swallowing and fed via a PEG tube. He was primarily cared for by his father.

The PCT of AB telephoned our Clinical Service Manager who provided support to other children in the community. The family was at point of crisis, when the father of AB had a car accident and broke his foot. This meant that the input he had in caring for AB and their other 3 children was limited.

Active Assistance was asked to provide care staff to work 8 hours per day, 6am – 10am and 4pm – 8pm to assist with the morning and night routine as soon as possible.

The care coordination staff were able to find complex care staff through the Staff Plan roster system that were within the correct location, had the correct skill base and training and were available to work with AB. A printed roster for 2 weeks was sent to both the family and care staff by the care coordinator.

As agreed with the PCT, the structure of the care, care plan and risk assessments were agreed by the family and PCT case manager during the first few days of the care being provided. Initially, the CSM spent 2 morning and 2 afternoon periods with the care staff (total of 6 staff) to complete the enhanced task competencies of PEG feeding.

The CSM kept in close contact with both Mum and Dad to ensure that the care provision matched their needs. After one week, it was decided that there needed to be an extra hour of care provided at the beginning of the afternoon period to ensure that Mum was able to collect other children from school on time if AB was not ready to go out. The care plan was altered by the CSM to reflect this additional care and also to include a risk assessment and plan for taking AB out to school in his wheelchair.

This care was in place for 6 weeks initially and then the PCT were happy with positive outcomes that AB showed and both Mum and Dad displayed towards AB going out into the school community each afternoon. It was proving to be a stimulus to his communication and he was displaying a positive reaction to being around other young people at the school and going to meet his siblings.

At the formal review with AB, months after the start of the care, his parents and the PCT felt that this provision should be maintained for the next 3 months. It was also agreed that there would be 24 hours per month that the family could use when necessary, to allow them to accompany their eldest child to their music performances. This needed a separate care plan, completed by the CSM, as it would involve the PEG feeding regime and personal care but the staff that AB and the family knew would be able to fulfill this respite care and would be placed accordingly into the respite care shifts. These were planned at least 2 weeks in advance.

AB now has a team of 6 care staff who are known to AB and the family and trained to provide outings, feeding regime and personal care and will be able to increase care provision or change activities through the guidance of the CSM when necessary when the needs of AB or his family change over time.

Paediatric Case Study C

MC is an 8 year old girl with cerebral palsy, ischaemic encephalopathy, bilateral hearing loss who requires management of frequent seizures and medication and feed via gastrostomy.

Active Assistance has been providing care to MC for 23 months. Initially, we were asked by the PCT to provide assistance to assist with MC’s morning routine for 2 hours and also 2 hours in the evening to help get MC ready for bed. Six members of staff were introduced to MC and the family and enhanced task competencies were achieved by all. As MC has two younger brothers the morning routine was very difficult to coordinate as MC wanted her Mum to wash and dress her. Mum and our staff found this very difficult to manage as the two younger children needed assistance to get ready too and the whole family were very often late for school and nursery, Mr C was late for work and Mum was frequently upset as she could not tend to all 3 children at one time.

The Care Service Manager (CSM) decided that she needed to experience the situation in the mornings herself if she was to offer a solution, so with the approval of the family, she attended for 3 morning sessions. A meeting was held with the PCT Case Manager, Mum and the CSM and it was suggested by the CSM that it may be beneficial for a “rota” within the family for the morning routine. This rota included all 3 children, the 2 care staff, Mum and Dad and was prepared by the Active Assistance care coordinator on a weekly basis. The CSM designed the chart to be a “Star Chart” including the favourite cartoon characters of all three children and it was indeed a success. The two boys liked getting the chart through the post and looking which was their “Mum” or “Dad” day for the morning routine, and MC was in charge of the “stars” for the chart. After 3 months, the boys had lost interest in the chart and the family were able to have a more relaxed routine, leave the house on time for nursery, school and work and MC decided that her “baby” brothers needed Mum and Dad more than her and our care staff did the majority of the morning routines each week. Thus by involving the whole family, Active resolved the issues that were affecting them all.

At the next review meeting with the PCT, Mrs C asked if the hours she used at the weekend for the morning routines could be transferred to a four hour block for Active Assistance staff to take MC’s 2 brothers on an outing, so she had time with MC alone. This was welcomed by our CSM, who needed to complete new service user plans and risk assessments for these trips to the local Park and indoor plat centre, and the care staff were delighted to have a different focus for the benefit of the family unit.

Active Assistance provide MC with true family centred care, adapting to the ever changing needs of all the children as they develop and enabling Mr and Mrs C to continue with their family life.

Paediatric Case Study D

DP is a 12 year old boy with Spinal Muscular Atrophy, severe Osteopenia and requires Bi-pap and oxygen support and feeding via a gastrostomy. He is an only child and only has Mum living with him for support. Mum works full time and has recently had to move to a different location for work.

Active Assistance provide overnight care for DP, 5 nights per week as he requires 2 hourly turns and hourly monitoring of pulse, respiration rate, oxygen saturations and temperature. He also needs his feed and bi-pap support during the night. Active Assistance also provides support for DP to attend drama club after school and a craft group. DP greatly enjoys his drama and craft club and looks forward to attending these each week. During school holidays however, these clubs do not take place. Routine has been further disrupted by a change in Mum’s working times, working patterns and place of work. Combined together, this means that the times of support Active Assistance provide were not meeting the needs of DP and his Mum. DP wanted to attend an art workshop that was 18 miles away once a week during school holidays; Mum wanted evening support so she could study and needed weekend night support instead of during the week when she was not always working. This meant that the set rota/care hours per week did not fit.

Active Assistance suggested to the PCT and Mum that we could operate a “bank” of care hours on a monthly basis. Our care coordinator would liaise with Mum on the third week of each month to look at following months activities of both herself and DP and match the weekly care hours to their activities. This needed a new invoicing process to be set up for correct invoicing and a system was put in place on our rota data base to ensure that the hours used by the family were monitored over a 4 weekly period. The care staff were consulted with to ensure that they had the capacity to be flexible with their night support provision and to ensure that there was a core group of staff that would be reliable, it was decided to place one member of staff, who had other commitments, with another family.

Within a month, this new system was in place and DP and his Mum had the benefit of support that not only met all clinical needs but their requirements in terms of education and social activity.

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