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Table 3 Service uncertainty

From: End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation

Service uncertainty refers to how the organisation and delivery of services can influence decisions about place of care, resource allocation and continuity of care

Example of service uncertainty linked to staff changes and the protracted period of dying that overrides good record keeping and shared documentation:

“There was somebody who was taken to hospital, … she had dementia and she had end stage kidney failure and heart failure … I’d been treating her for probably three or four years …she started to deteriorate … … it was written in her notes ‘this lady is for palliative care only and is not to be transferred to hospital unless she becomes acutely unwell’…… it was very visible in her summary, in red, unfortunately it was a day that I wasn’t around and she became acutely short of breath and a telephone call was made to the surgery …and it was taken by one of our registrars who just didn’t see the entry on the notes and said ‘call an ambulance’ and she was taken by ambulance to hospital and died that day” [EVIDEM EoL].

Care home manager giving example of where a resident could not be supported in the care home for service reasons:

“…, because if I’ve got a ratio of 1 to 8 staff, it’s how much pressure do I put on staff? So, if I’ve got a resident who needs two to three carers, then it’s not actually our criteria…because I can’t up the staff level. It works both ways really, it’s obviously not putting pressure on staff as well as making sure that the person is going to get the best care. [EPOCH]

“One of the service level agreements .., is that they agreed with different practices to take a specific interest in certain care homes. That’s been a standing procedure here for quite a while and they [GPs] get some financial redress…. …..but just to have that better communication, so that we all have a better understanding of what we all need, and build these relationships to ensure reliable service provision…” [Care Home manager-TTT study].