Drew is a 26-year-old Aboriginal man who has an intellectual disability and cerebral palsy. He lives with his parents in rural NSW. He has a nasogastric tube in situ that is used for nutritional supplements and medication.
He aspirated nutritional forrnula while in respite care and was admitted to hospital with pneumonia.
There had been previous discussions with Drew's family about having a gastrostomy tube inserted into his stomach for feeding, but it was later found not to be possible, due to Drew's severe kyphosis. His family were never happy with this proposal as they identified food as one of his few pleasures in life.
Nasogastric tubes are not a preferred long-term mode of feeding because of the risks involved. For Drew, they were often dislodged and management in the rural area where his lives was very difficult. The local hospital is unable to replace the tube so Drew needs to travel to the base hospital for replacernent of his nasogastric tube. There is no care coordinator available to advocate for Drew, develop a pathway to care which could bypass the emergency department (ED), or book regular appointments. Insertion requires a radiologist and having the correct tube available. This often means Drew is hospitalised for the weekend, and kept hydrated with an intravenous infusion while he waits for a replacement tube and the radiologist to be available.
The hospital discharge planner identified issues around Drew's ongoing care and unmet needs, and was able to navigate a clear pathway through the health system which incorporated a multidisciplinary approach to care planning. Drew and his family were at the centre of discussions and were supported by the Aboriginal Health Worker. The hospital discharge planner became the key contact for Drew within the health service.
You can read more case studies of effective supports delivered by health services to people with intellectual disability at www.aci.health.nsw.gov.au/resources/intellectual-disability/toolkit/intellectual-disability-toolkit/discharges-from-hospital-intellectual-disability-case-studies
Harry, 45, lives in disability supported accommodation. He has intellectual disability, mental health concerns and needs communication support. Harry has an ingrown and infected toenail which will require a medical procedure. He is afraid of being in hospital with people he does not know, especially as his past visits to hospital were not pleasant experiences.
The staff at Harry's house are not sure about the health system and Harry's health needs. Harry does not have a regular GP but staff, after some effort, were able to get referrals to appropriate health specialists.
Eventually Harry receives a letter to attend a clinic.
The health staff in the clinic are unfamiliar with working with people with ID and their lack of confidence and communication skills unnerves Harry, who becornes anxious and wants to go home. In the confusion of the moment, there is no time for health staff to assess Harry's needs around communication support, mental health and ID support.
There is no opportunity for health staff to explore ways in which Harry's needs could be managed and security staff are called to contain the situation as Harry becomes more frightened and his behaviour escalates. Staff are unsure what to do, do not know where to access support and decide they are not skilled to care for people with ID.
Harry returns to his supported accommodation without being assessed. He refuses to consider attending the next clinic appointment.
The supported accommodation staff are reluctant to be involved with the next clinic appointment after this experience and all their efforts, which did not help in the end.
Harry's toenail becomes septic and he becomes very unwell. Accommodation staff call an ambulance and Harry is admitted to the local hospital's ED. He remembers his previous experience and becomes very anxious again. The staff remember Harry from his recent visit and avoid caring for hirn as they lack confidence in their skills.
Harry stays in hospital for six weeks while he receives treatment. This is much longer than expected.
Mary, 45, lives in disability supported accommodation. She has intellectual disability, rnental health concerns and needs communication support. Mary requires a medical procedure to meet her health needs. For Mary, this means using visual aids and social stories. Often an anaesthetic is required to ensure fear and anxiety do not prevent effective assessment and intervention. She is afraid of being in hospital with people she does not know, especially as her past visits to hospital were not pleasant exper ences.
The team leader at Mary's supported accommodation saw it as her role to make sure she had an understanding of the health system so she could advocate for Mary's health needs. It took months for Mary to understand she needed to see a GP to get referrals to appropriate health specialists for gynaecological and dental reviews.
Mary's regular GP and her accommodation team leader were able to identify a hospital that was able to support Mary and her specific needs. A pre-admission planning case conference was arranged at the hospital and accommodation staff prepared Mary for this using a social story book.
Her team leader brings along the NSW Health & Ageing and Disability and Home Care (ADHC) joint guideline (2013). The health staff are not familiar with the document, but with discussion, everyone decides to use it to work together. The meeting helps everyone to understand Mary's special needs around comrnunication support, mental health and ID support. The staff explore ways in which Mary's needs can be managed while she is an inpatient and put steps in place to do this, such as being there to support her and encourage her to drink after her surgery. Because Mary needs two procedures, the hospital staff suggest that Mary is booked to have both procedures at the same time, while under anaesthetic.
Mary is prepared as an inpatient the day prior to her procedures. Her support staff are given the likely time of medical rounds so they can see medical staff to ask any questions.
Everything went to plan, and Mary did not stay in hospital longer than expected. A comprehensive discharge summary is provided to her support staff and GP who provides routine follow-up care. Group home staff report no adverse impact on Mary's mental health after her hospital stay.
- Guiding principle 5 - Health services are delivered in a person and family centred way
- Relevant NSW Health policy- Responding to Needs of People with Disability during Hospitalisation
- Enabling domain: Workforce - health staff are supported to make reasonable adjustments as needed
- Health service delivery: Hospitalisation - preadmission visits/clinics are offered to people with ID and their support network prior to a planned hospital stay
- Toolkit to support action -Say less show more; Hospitalisation toolkit
George's reported experience: 'I was able to go to hospital like everybody else'