John, a 4-year-old boy with severe neurodisability, had been admitted to hospital as an emergency, four months previously, due to severe difficulties with his breathing. This had resulted in him having surgery performed to establish a tracheostomy. The acute children’s ward has contacted the CCN service, to advise that they wish to begin planning for him to be discharged home. A team member was allocated to admit John to their caseload and took responsibility for attending meetings and being involved in planning for and supporting John’s discharge and ongoing care.

Attendance at a discharge planning meeting assisted the CCN to collate relevant information on John’s condition, identify the professionals involved, and agree roles and responsibilities with an evolving plan of action for John’s discharge, including estimated timescales, and professionals who would liaise throughout the process. A further date was agreed for a meeting to discuss discharge.

The CCN’s initial home assessment allows an opportunity to begin building a relationship with the family and an holistic assessment of John and his family’s needs was undertaken. John’s care package would require a multi-agency approach to ensure the whole family’s needs were met and the CCN assessment allows areas of unmet need to be identified. John had a range of healthcare needs prior to his emergency admission to hospital due to his underlying genetic condition; however his care needs would become increasingly complex on discharge from hospital.

Family structure

John lived with his mother Elizabeth, father Greg and older sister Ann, 12 years. Dad works full time so mum was identified as the main care giver. The family had paternal grandparents nearby but there was limited support they could offer.

Airway and breathing

John had an established tracheostomy; he required regular nebulised medication to relieve a wheeze. He required frequent suction applied to his tracheostomy as he had copious secretions, he had a continuous oxygen requirement of 0.5 litres per minute via a tracheal mask.

Diet and fluids

John had a diagnosed unsafe swallow and had an established balloon gastrostomy tube, he received 4 bolus feeds, plus water daily to meet his requirements and was under the review of a dietician.

Elimination

John was incontinent of urine and faeces.

Skin care

Although John’s skin was intact, he was assessed to be at risk of pressure damage.

Sleep

John had a variable sleep pattern in hospital but tended to sleep late in the morning and be more alert in the afternoon.

 Mobility

John was unable to move and was dependent on a carer for all movement and positioning; he had supported seating, a buggy and a shower chair already in place.

Communication and social interaction

John had visual impairment, his hearing was normal, he had a severe learning disability and no verbal communication, but would give eye contact, smile and laugh, he rarely cried. He loved watching children’s programmes on his I-pad and listening to music.

Maintaining safety

John required close supervision, due to his requirement for frequent suction of his tracheostomy and would need some interventions overnight.

Equipment

The CCN had responsibility for some of the equipment needed to allow for John’s discharge. Although he would be discharged with a suction machine, a backup suction machine was also ordered. John slept in a cot and it was agreed that an electric profiling bed and pressure relieving mattress would be required. The CCN was able to order this, with delivery within an adequate timeline which would not delay his discharge.

A list of all the sundries that would be necessary on an ongoing basis was collated, to structure a process, which allowed an order to be placed on a regular basis. This would ensure that there would be no additional anxiety on the family, about where they would obtain ongoing supplies on discharge from hospital. An initial supply of sundries and medication to last for the first 7 days is normally supplied by the hospital; ongoing prescriptions should be organised via the GP or by hospital staff on discharge.

Housing

The family lived in a two-bedroom, local authority property. There were no assessed access difficulty within the home, but there were two steps to the front door. The CCN made a referral to social work occupational therapy services, who following assessment agreed to fit a ramp to allow easy access for John. Parents were supported to contact the local authority and arranged to have a disabled space created directly outside their house.

Respite Care

John had been referred to the children’s hospice to allow the family to have support and respite, but the family were keen to have some flexible home-based respite, to allow them some quality time with their daughter Ann. The CCN liaised with social work and funding was identified to support a care package; a local voluntary agency could offer the most flexible care package that was able to meet the family’s assessed needs.

Training

John’s parents were undertaking tracheostomy training with the clinical nurse specialist and ward staff; this would ensure they were confident in all aspects of John’s care. The role of the CCN was to support them when this care was transferred to a home environment and ensure they felt skilled and confident in all aspects of John’s care. The CCN also took responsibility for training and subsequently reviewing members of the extended family in selected aspects of John’s care to allow his parents a break from their caring role. Voluntary agency workers were identified and in partnership with Elizabeth, the CCN arranged to carry out a competency-based training package, which would ensure a safe, effective and family-centred respite care package.

 Finances

John’s father Greg was in full time employment. The social worker was able to advise on benefits that they would be entitled to and also accessed some charity funding for sensory equipment for the home. The CCN assisted in completing a new claim form for disability living allowance (DLA).

Risk assessment

Risk assessment was undertaken using a multi-agency approach, as there were different elements of risk, which informed part of the action plan to ensure John’s needs could be met safely within his home environment on discharge.

Clinical risk

Assessment of the ability of John’s carers to manage all aspects of his care safely and to respond appropriately to emergency situations.

Equipment

Ensuring all equipment is provided to meet John’s needs, carers are trained to use it and there is a process in place to check, maintain and replace equipment if required.

Home environment

Home needed to be accessible and have enough space to meet the whole family’s needs, be free from dampness and adequately heated. An assessment took place to ensure oxygen could be safely installed within the home and decide the most suitable delivery system. Energy providers were contacted to ensure priority re-connection.

Moving and handling

Assessment ensures John can be transferred safely to a variety of supported positions (bed, chair, shower/bath, floor). Equipment and appropriate training is offered to carers to minimise the risk of injury during moving and handling.

Discharge

A final discharge planning meeting was held. Parental involvement was essential throughout the process. The hospital team updated the multi-agency team on John’s current health and treatment, including his and the family’s readiness for discharge. A plan for follow up care and identifying the responsible paediatrician was drawn up. The ensuing discussion examined assessment information, addressed any actions which had been undertaken and identified any outstanding actions. Agreement was reached that any risks identified were minimized and manageable, the main components of the care package were in place to allow safe discharge home and the professionals and family arrived at an anticipated date for discharge.

 Helen – Community Children’s Nurse

• Can you list the professionals who would be invited to attend John’s discharge planning meeting?
• List some of the obstacles that could delay or prevent John’s discharge?
• What, in your opinion, would help prevent John from being re-admitted to hospital?