What difference does it really make whether patients and carers feel “listened to” or “involved in their care”? Are these ideas simply warm words, or do they make an important difference to the experiences and perhaps even outcomes of health care?
Perhaps the best way to answer such questions is to hear from patients themselves. We have been fortunate to be supported by Dr Penny Newman, NHS Innovation Accelerator fellow and founder of Better Conversation Better Health, to address these questions by analysing stories on Patient Opinion.
This blog post summarises the key findings. You can also download the full study report.
The study was undertaken by Dr Jackie Goode of the University of Loughborough. Jackie analysed 162 stories on Patient Opinion to understand why people sometimes feel listened to and involved in their care, and sometimes do not – and what impact this then has on health and wellbeing, and on future use of services.
Involving people in their care
In the stories, many patients described very positive experiences of care. People felt happy, involved in their care, and even empowered, when they felt:
- They were given time, or listened to
- They were given clear accessible information and explanations
- Communication was two-way, not one-way, and their knowledge was recognised and respected
- They were treated ‘holistically’: as a person rather than a set of problems; as a whole person not just a condition or body part; and as an individual, sometimes with idiosyncratic needs
- They were given options and were able to share in decision-making
These features add up to a ‘partnership’ model of health care, resting on respect for the patient and their knowledge, experience and resourcefulness.
In one story, a patient makes clear what shared decision making looks like:“Yesterday we both agreed that I would be discharged from her care – please note ‘both agreed’.” 
And a young person describes the impact of being treated with respect:“At no time has (school nurse) ever judged me as a person she has always listened to what I have said and given me strategies and ways to cope… she will challenge me and ask me a little bit more but never ever says I am to blame… This has made me feel so much better in myself as a person. I am now looking forward and not back…” 
Organisational cultures which support and encourage such a “partnership” approach to care are noticed and valued by patients:“This is clearly a very busy but exceptionally well-run hospital with all professionals working together and the patient and family as equal partners”. 
And the result is a direct positive impact on health and wellbeing:“I now feel I have the tools to improve my quality of life … The staff have empowered me to deal with different situations through their individual skills & techniques. I feel like a different person leaving here today.” 
In short, where a “partnership” model of care is present, the impacts on patients and carers include:
- Feeling valued/cared for
- Enhanced confidence (in services and/or in own recovery)
- Enhanced motivation
- Greater self-management
- Greater resilience
- Better health/quality of life
Alienating people from their care
Some of the stories described negative experiences, when people felt:
- They were not given respect
- Their questions and concerns were ignored, dismissed or contradicted
- They were excluded from decisions about their health and care
Experiences like this demonstrate disregard for patients’ entitlement to a professional service. But perhaps worse, such experiences show a failure to recognise the necessity for people to be active partners in their own care.
One patient described direct clinical consequences of not being listened to:“One GP prescribed medication even though I said I would react to it… I then did react to it and had to go to the walk-in centre. The GP did apologise afterwards, but I hadn’t been listened to”. 
Another recounted their ongoing struggle to have their own priorities (rather than professional priorities) recognised as important:“I have had type 1 diabetes for 35 years. Same HbA1c since I can recall. Always good control. Same weight since I finished school, always active and lean build …because of that, I no longer let the NHS weigh me or test my HbA1c because it's always the same. I have no problems with my control, and it's not what I'm interested in measuring. My health care team are consistently openly frustrated and annoyed about this. One time a nurse would not let me see a doctor unless I let her take my blood … I've become better at ignoring all of their patronising and offensive behaviours and I write down what I need out of each appointment and stay focussed on getting that addressed. I've managed to do that, but each appointment is made so awful because the health care providers show no concern about what's important to me.”
One service user described the impact of being excluded from an important decision about their care:“A locum psychiatrist I had met only once for a routine appointment for 10 minute made the decision to discharge me … Purely based on case notes, no assessment, no discussion with other staff who knew me … I wasn't given a chance to air my point of view, concerns … His manner was rude. I was shocked and upset and confused. I have always been involved in decisions about my treatment, care and support.”
In patients’ own accounts, the impacts of such experiences of care include:
- Loss of trust/confidence in professionals
- Lack of “compliance” with treatment
- “Inappropriate” accessing of services
- Poorer health/quality of life
It is clear from many experiences of care being shared on Patient Opinion that a model of health care in which professionals actively engage patients (and their families) in their own care produces a range of important positive outcomes. Such ‘partnership’ working with shared decision-making at its centre involves recognising, tapping into and/or enhancing a patients’ own skills, abilities and resourcefulness.
Conversely, it is also clear that an approach to care which disrespects patient knowledge and experience, ignores concerns, fails to provide information or excludes patients from decisions about their care, results in a range of negative outcomes for patients and services alike.
These findings are not new. But the recency of these stories on Patient Opinion suggests that these issues remain current. Even if only a minority of patients experience the negative outcomes we identify here, the overall adverse impact on health and wellbeing, use of services, and health care costs will remain significant, and entirely avoidable.
Download the full report
Being listened to: what difference does it make?Being listened to: what difference does it make? https://patientopinion.blob.core.windows.net/profile-pictures/657ea709-7097-4125-bba0-046aa4473e1c.jpeg Care Opinion 0114 281 6256 https://www.careopinion.org.uk /content/uk/images/logos/co-header-logo-2020-default.png
Question from Care Opinion
Posted by James Munro, Chief executive, Care Opinion, on
Response from Coe on 1 Feb 2017 at 13:12
Indeed these findings are not new. Perhaps it would be more constructive to ask staff to identify the barriers which stop them from actively engaging with patients and families. In my experience staff DO want to engage and offer person-centred care but until the fundamental issue of bare minimum staffing levels is addressed nothing will change. Scottish Government and NHS Boards continue to ask staff to do more, with less resource and as a result patient care is not what it should be and staff have to deal with additional stress.