Who knows best?

Jon Glasby on behalf of the ‘Who Knows Best’ team (Rosemary Littlechild, Rachel Thwaites and Nick Le Mesurier), University of Birmingham

Whenever there is significant pressure in acute care, a common response is for us to question whether all the people (often frail older people) who are currently in hospital really need to be there in the first place – or whether they could have been cared for in alternative settings had such services been available at the point of admission

Some media accounts even quote estimates of the number of beds we could save, and research over time has sought to calculate the rate of ‘inappropriate admission’ (a horrible phrase which should banned).  Incredibly, our research into older people’s experiences of emergency admissions found that almost none of these previous studies have engaged meaningfully with older people themselves, and that few seek to involve front-line staff in such debates.

In contrast, we talked to just over one hundred older people with recent experience of emergency admission in three contrasting case study sites, and met with front-line staff from a range of different professional backgrounds.  Only nine of these older people felt that hospital was not the right place for them, and even these people seemed very unwell at the time of admission.  None of the GPs or hospital doctors who took part felt that these admissions (or any other admission in our sample) were ‘inappropriate.’  Contrary to media stereotypes, moreover, some older people may even have delayed seeking help in a crisis through fear of being a burden on scarce NHS resources, potentially jeopardising their health through a desire not to be admitted if they could possibly help it.

In our experience, we are missing a major trick by not engaging directly with older people and their families.  Not only is this wrong at a time when services state their commitment to the principle of ‘nothing about me without me,’ but it is also a waste of precious expertise.  By definition, older people are the only people with a longitudinal sense of how their health has declined, how services responded when they sought help, how their subsequent admission took place and what happened next.  No matter how well trained or technically skilled, health and social care professionals tend to know the person only from the moment they walk in the front door, and we miss significant insights as a result. 

In addition to challenging traditional assumptions about older people’s use of hospital beds, participants in our study raised a series of key issues for policy makers, local leaders and practitioners trying to develop more preventative approaches.  During the course of their interviews, they talked about the central importance of their GP and the ambulance service as key figures that older people look to before being admitted, as well as the importance of advice from family and friends.  Several older people had also experienced recent appointments or hospital stays, but felt that they hadn’t been sufficiently listened to, with staff focusing only on the presenting problem and missing an opportunity to get it right first time – only for a subsequent admission to occur in a crisis.  Family members of someone with dementia also felt that some health services are not set up to work well with people with dementia and that social care support is currently insufficient.  Above all, older people distinguished between ‘appropriate/inappropriate admissions’ (debates about whether a hospital admission was needed or not at that particular moment in time) and ‘preventable admissions’ (recognising that an ‘appropriate’ admission could still be prevented by earlier action to stop someone’s health declining to the stage where an admission is required).  This seems a much more sophisticated notion of prevention than is present in many of our current debates – and is an insight that only came from older people themselves.

Some of the lessons learned have since been captured in a good practice guide which has been sent out to every hospital Trust, CCG and Director of Adult Social Services in the country,  as well as via a ‘social care TV’ video summary.  However, the key message is that older people have a key role to play in understanding the causes of emergency admission and possible alternatives – and we neglect this expertise at our peril.

The research was funded by the NIHR Research for Patient Benefit Programme (PB-PG-0712-28045).  The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

In total, we interviewed 104 older people or their families within 4-6 weeks of their emergency admission and sent surveys to these people’s GPs and a hospital-based doctor (with a total of 45 responses).  We also reviewed the previous literature in the UK and beyond, interviewed 40 health and social care professionals and explored the stories of some of the older people who took part in focus groups with 22 local front-line practitioners.  The project was overseen by a national ‘Sounding Board’ comprising: Age UK; Agewell; the Association of Directors of Adult Social Services; the NHS Confederation; and the Social Care Institute for Excellence.  The research includes a ‘Social Care TV’ video summary, a full research report and a good practice guide.

This post first appeared in NHS Voices.