Putting patients first
BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e2006 (Published 16 March 2012) Cite this as: BMJ 2012;344:e2006
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What patients want is to be treated with kindness, and that is taught by example not by decree.
Attitudes to patients are set at the top. If a hospital consultant is courteous and friendly to patients , his or her team will follow suit. If a senior GP is patronising or derogatory, it rubs off.
But NICE cannot make NHS staff nice by recommendation. We just need to think, how would I want to be treated if I were this patient? Or, if this were my mother or father or child, how would I treat them?
It is easy to blame pressures of time and workload, but there are many people in the NHS whose treatment of me and my family I remember with warmth and admiration. For staff who don't get it, training courses have a place, but everyone can tell a customer-care smile from the real thing. Tick-boxes may be useful for checking treatment schedules and might even help to ensure that patients are helped to eat the food that is put down in front of them. But they can't make uncaring people relate to patients in a thoughtful and civilised fashion.
Competing interests: No competing interests
National Cancer Survivorship Initiative- Patient reported outcome survey of cancer survivors (PROMS cancer survivors)
Whilst it is vital to understand patient experiences, this must be explored in ways which do not cause more harm. Vulnerable cancer patients are being caused unnecessary distress by government moves to ‘normalise’ a cancer diagnosis and make patients ‘toughen up.
As a Specialist nurse and counsellor working in Cancer Services in the NHS I regularly see patients struggling to come to terms with the devastating effects of a life threatening Cancer diagnosis and mutilating surgery. Patients with breast cancer who have undergone mastectomy often take many years to come to terms with their changed body image. Many avoid or remove mirrors so they do not have constant reminders of their mortality until they have begun to adapt to a new and changed body image and sense of self.
As a Health Professional I have concerns about the way patients experiences are being measured. The National Cancer Patient experience Survey (approximately 77 questions) carried out in 2010 which included highly sensitive and emotive questions.
Whilst some patients are clearly interested in taking part in cognitive testing, they may not be representative of the cancer population as a whole. With the best response rate, approximately 40% patients do not return questionnaires and are perhaps distressed at receiving them before they bin them. They are still our patients and we have a duty of care to look after them and do no harm.
Many clients report the moment of a cancer diagnosis, and a vivid recollection of that point in time, as a trauma which cannot be processed immediately. Patients subsequently embark upon a variable grief process. Forcing patients to face aspects of care which may still be raw and unprocessed may inadvertently overwhelm their coping mechanism them causing defence mechanisms to snap in to place to preserve mental integrity. This is anti therapeutic with high potential to re-activate the trauma of diagnosis and associated events and adversely affect recovery and future mental health potentially leading to anxiety, depression, Post Traumatic Stress Disorder (PTSD) etc.
Questionnaires and tick lists which are designed to address communication deficits and measure patient experience to assess psychological/holistic needs largely rely on speech and language. Apart from the fact that a framework of vocabulary is being imposed upon patients often preventing them from using their own words, this may be introducing new ideas and worries which may be frightening. Assumption are made that words mean the same thing to everyone, and that patients have conscious control and understanding about what they say and subsequent responses.
However, human speech may involve truth, lies, desire to please the person asking the questions, but most importantly it may involve self deception due to subtle psychological processes which come in to play to protect the human psyche when it is under threat from anxiety.
Quantitative surveys and measurements may thus be ill equipped to assess how human beings regularly deny, repress and re write aspects of their lives and illness experiences and are likely to produce unreliable and flawed results.
Whilst appearing to pay lip service to diversity & difference, in fact patients are being coerced more than ever to think in uniform prescribed ways rather than the collaborative work required. What sort of world do we live in when Performance Related Outcome Measures (PROMS) are substituted for such a basic activity as listening and responding to patients in distress in order to satisfy the language of non clinical commissioners who may not understand the more subjective, less easy to measure human to human aspects of care? There is a need for emphasis on relations between people.
Many of these patient experience questionnaires are of a highly sensitive & emotive nature with much power to distress and disturb patients who may already be in a fragmented mental state. It is a basic human right to be treated with respect for mental and physical integration. Patients complain of being processed. They appear to be becoming less a person to be listened to than an object to be treated and we may never discover why one individual responded a certain way and what that response actually meant.
In order to be unleashed on the public, such surveys and various ‘Testing’s’ going on nationwide appear to be bypassing the usual governance procedures because they are being presented as service improvement/audit, (although they are effectively research if they are using the word ‘cancer’ for the first time as many are boasting- and should be handled as research if we are to avoid causing much distress/harm to many vulnerable patients who are being coerced into filling in the surveys.
What sort of precedence is being set to other researchers if the Cancer Action Team decides that a wealth of experience and literature evidencing harm to vulnerable patients can be disregarded and ignored to try to normalise a cancer diagnosis?
A Pseudo scientific emphasis on measurable outcomes and visible results has replaced careful work that affords dignity to each individual. Holistic needs assessment may be experienced as a violent imposition of a worldview which does not allow responses outside of already known preconceived concepts and categories. Far from improving cancer care the effects may be to deaden & de sensitise patients and the nurses caring for them to the dreadful vicissitudes of a cancer diagnosis. This is likely to potentiate a cycle of defensiveness more likely to inhibit empathic human to human engagement with patients than to improve communication.
These surveys are being given section 251 ethical clearance which relates to the data, and is not an ethical review of the study. Ethical review by an NHS ethics committee is long overdue if we are to remember and honour doctor-patient relationships and the Hippocratic oath which are currently being violated
Competing interests: No competing interests
We have read with interest the article Putting patients first (1). It insists on the patient experience used in the recently published NICE guidance (2)
We are working on the relationship between aging people and medicine. In a qualitative study we have done in France (3), Geriatricians ask General Practitioners to anticipate as early as possible morbidities linked to physiological ageing and loss of autonomy. The information should also be transmitted by media and society.
Otherwise, with the 4/3/2 law (4), information has become a legal obligation for doctors in France.
In this perspective, we are obliged to see that very often, the patients’ wishes are not the doctors’ wishes. In this way, we observe that very often in primary care, prevention items interesting general practitioners are not those that interest patients.
And we notice that respecting NICE Guidelines, doctors should make patients benefit of a good experience including day to day conditions (1).
But we are confronted to a limited access to information. Where are the limits of statistical information? Is it legitimate for a physician to impose stress and anxiety on a disease risk factor? Is it acceptable to threaten patients with a sword of Damocles? The notion of balance of risks, benefits, and side effects is statistical. However statistics are a tool for doctors and absolutely not for patients. Information given by physicians should benefit from integrated care, a care centered on the patient in his individual lifecourse.
We suggest stopping managing aging prevention as the sum of risk factors, and propose instead a holistic approach managing the frailty concept (5). It is a simple and more efficient way to integrate the biopsychosocial model of general practice.
By learning to ask the right questions, patients and families are empowered to make the best decisions (6).
(1) Eaton S, Collins A, Coulter A, Elwyn G, Grazin N, Roberts S. Putting patients first. BMJ. 2012 Mar 16;344(mar16 1):e2006–e2006.
(2) O’Flynn N, Staniszewska S, on behalf of the Guideline Development Group. Improving the experience of care for people using NHS services: summary of NICE guidance. BMJ. 2012 Mar 16;344(mar16 1):d6422–d6422.
(3). Tudrej B. Re: Fall assessment in older people [Internet]. 2011 Nov 9 [cited 2012 Jan 12];Available from: http://www.bmj.com/content/343/bmj.d5153?tab=responses
(4). JORF du 5 mars 2002. Loi n°2002-303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé. 2012.
(5) De Lepeleire J, Iliffe S, Mann E, Degryse JM. Frailty: an emerging concept for general practice. British Journal of General Practice. 2009 May 1;59(562):177–82.
(6) Mallery LH, Moorhouse P. Respecting Frailty. J Med Ethics. 2011 Feb 1;37(2):126–8.
Competing interests: No competing interests
The emphasis on a positive patient experience of health care, included in the NHS Outcomes Framework [1], is very much to be welcomed. Many of the suggestions in the NICE guidance [2] and accompanying editorial [3] are thoroughly sensible. Indeed, many are required by English law and GMC guidance, rather then simply being the opinions of the guidelines group.
However, both articles appear to miss the root of the problem. I work with and research frail older people, in particular medically ill, confused older people in general hospitals, who were barely mentioned in the articles, despite occupying an estimated 25% of NHS hospital beds, and for whom the problems are most acute [4].
Phrases such as 'improve the attitudes and behaviours of healthcare professionals' and 'a cultural shift is required' appear to situate the problems in the actions of individual healthcare workers. There are some poor attitudes around, and they are inexcusable, but the reality is more complex.
The CQC Dignity and Nutrition Audit report [5] identified 3 factors: leadership; skills and attitudes; and resources. Leadership means priority at the level of wards, organisations and health communities. Care that leads to a good experience is skilled, labour intensive and emotionally draining. Staff feel underprepared for their work, and didactic models of on-the-job training are unconvincing (co-working with mental health professionals works better). We found that the overwhelming response of staff to caring for confused older people was frustration, not disrespect. Staff were desperate for better knowledge and skills [6]. Many of the NICE suggestions are time consuming and resource intensive. The role of inadequate resources in all this has been underemphasised, perhaps because it is such an unwelcome message.
There was relatively little mention of the role of family carers in the articles [1,2]. They have a special role in the lives of confused older people, but are a diverse group (co-resident or not, care home or not) and have particular needs of their own. Assessment and acquiring background information, decision-making and day-to-day care require their close involvement, as well as keeping them informed. They are often stressed and tired, and may have their own physical and mental health problems. Skilled, emotionally draining, and time consuming.
An important SDO report on dignity identified 3 interrelated but competing influences on quality of care: the complex needs of patients and their carers; the healthcare organisation; and the staff [7]. The complexity and difficulty of the needs of patients are not to be underestimated: ill, dependent and with a lot of psychopathology [8]. Pressures on the Organisation include financial balance, regulation and managing risk. This leads to limits on resources and a top down 'tick box' culture of assessment and risk management. Examples include nurses working 'long days' (13 hour shifts which minimises handover time, but leaves staff exhausted), lack of day or dining rooms, few diversional or therapeutic activities, and fragmentation including poor 'vertical integration' and separation of acute care and rehabilitation. Staff may respond dysfunctionally, as they try to balance the competing demands of patients and carers on one hand, and the Organisation on the other. A very pervasive view is 'right place, wrong person': that frail older people shouldn't be in hospital at all, which leads to environment, staffing and systems being inappropriate for the needs of the majority users of hospitals.
The authors of the SDO Dignity report point out that proper provision for frail older people would automatically be appropriate for other groups as well [7].
The scale and severity of this problem have yet to be fully acknowledged. The on-going dis-investment from NHS acute hospitals will make it very difficult to rectify. We also need a major re-design of both pre- and post-registration staff training. However, the 5 domains of the NHS Outcomes framework are an ideal opportunity to get this right, and central to these is ensuring a positive experience of care.
References
[1] NHS Outcomes framework. Department of Health 2011. www.dh.gov.uk
[2] Eaton S et al. Putting patients first. BMJ 2012 344: 11.
[3] O'Flynn N et al. Improving the experience of care for people using NHS services: summary of NICE guidance. BMJ 2012 344: 41-43
[4] Alzheimers Society. Counting the Cost. 2009. www.alzheimers.org.uk.
[5] CQC Dignity and Nutrition Audits. National Report. 2011. www.cqc.org.uk.
[6] Gladman J et al. Better mental health care for older people in general hospitals. SDO report 2012. www.netscc.ac.uk
[7] Tadd W et al. Dignity in Practice. SDO report 2011. www.netscc.ac.uk
[8] Goldberg S et al. The prevalence of mental health problems among older adults admitted as an emergency to a general hospital. Age and Ageing 2012; 41: 80-86
Competing interests: No competing interests
It is great that we are having this discussion because we are missing the point if we are doing clever medical things but people are not feeling better.
In 50 years time I wonder if we will still be talking about 'patients' and 'professionals'. I wonder if we could get to a point where we all have a view which contributes to decisions about care, services delivery and where to allocate resources. Not every view will be as reasoned or fair as it could be, but that's ok. It can still be heard.
In my experience of giving and receiving health care, a quality experience is down to the level of how that person is doing today. If the professional is rushed, harassed and cross, then I am another problem to sort and get out of the door. If the care giver is relaxed and comfortable then I am much more likely to leave feeling better.
In my view adding metrics just adds to the burden of the care giver. We should be trying to help the person giving care to do the best they can. Rewards. Breaks. Working in supportive teams.
If we begin to genuinely measure patient experience then the results will depend largely on how well we treat the workers. Huge room for improvement there.
Competing interests: No competing interests
The Self Care Forum concurs with Eaton et al’s (1) belief that self-management should be included in NICE’s quality standards programme, but believes the response from NICE could be more encouraging.
The purpose of the Self Care Forum is to further the reach of self care and embed this into everyday health care (2). To do this effectively goes beyond agreeing a set of quality standards, but requires the NHS to standardise the way in which it helps patients manage their own health. A holistic pan-NHS approach is needed which ensures consistent messages on self care and individual responsibility are promoted at every touchpoint of a person’s NHS experience, whether primary or secondary care, an A&E or 111 interaction, and including advice from NHS Direct and NHS Choices.
A more proactive approach to self care is essential if the NHS is to better equip patients to become capable and confident in managing their health in the future. This begins with the ability and knowledge to handle everyday minor ailments so that patients are better placed to self manage long-term conditions as and when they strike in their lives.
The Self Care Forum believes organisations, such as NICE, can help to drive change, speed implementation and empower people toward a better health outcome. Adopting an integrated self care approach is synonymous with patient-centred care.
References:
1. Eaton S, et al. Putting patients first. BMJ 2012; 344:e2006.
2. Self Care Forum. www.selfcareforum.org.
Competing interests: Gopa Mitra and Sheila Kelly work for the Proprietary Association of Great Britain, David Haslam is the Chair of Evidence Medicine
We welcome the article by Eaton et al (1)on patient experience. NICE is committed to improving patient outcomes and supporting patient-centered care. We have published 15 healthcare quality standards aimed at driving up the quality of patient care in the NHS and more are planned for a range of conditions, including long-term illnesses.
We recognise the ‘implementation challenge’ highlighted by the authors, and agree that reliable and consistent measurement of patient experience is a critical factor in driving improvements. Ensuring quality standards are developed in such a way as to be readily measureable, both locally and nationally, is a core part of our methodology (2). We are working with the NHS Information Centre and the emerging NHS Commissioning Board to ensure data relating to quality standards is routinely collected and published.
NICE actively promotes patient-centred care and, to this end, produces patient versions of clinical guidelines to help people make informed decisions about their treatment and care. NICE is also exploring mechanisms to ‘accredit’ high quality patient decision aids to make sure that the tools patients have available to them to make decisions about their healthcare are both rigorously developed and evidence based.
Whilst much of our guidance is designed to address single pathologies, this is largely a product of the context within which the evidence for our guidelines is developed. We are now starting to consider how we can develop guidance in a real setting where many people experience multiple morbidity.
In the future, we will support people even further with our new social care role. Under the planned NHS reforms, we will produce social care quality standards which we expect will make a real contribution to the social care sector. It is widely acknowledged that integrating health and social care practice is absolutely fundamental to helping drive up the quality of patient care.
References
1.Eaton S. et al. Putting patients first. BMJ 2012; 344:e2006
2. http://www.nice.org.uk/guidance/qualitystandards/moreinfoaboutnicequalit... (accessed 20 March 2012)
Competing interests: No competing interests
Re: Putting patients first
Eaton and colleagues identify a number of concerns about quality of care, particularly in the UK’s NHS. They note that (sadly) “people who work in healthcare often seem to be immune to anxiety, excessive waiting, and impersonal and unnecessarily distressing experiences .... and participate in care that isn’t delivering a good experience”. (1) That quality needs to be improved is undeniable. The question is how, and what do efforts to improve need to based upon?
Eaton and colleagues have somewhat simplistically latched onto NICE’s Guidance and quality standards on patient experience. They note that “improvements will not be seen unless we understand and improve the attitudes and behaviours of healthcare professionals as well as systems and structures of care. Key to this will be reliable and consistent measurement of patient experience..... The detailed quality measures included in the quality standards document are a good place to start.” (1)
Notwithstanding that the concluding statement of the summary article (2) that “robust measures of the experience of patients still need development and validation to achieve this aim” the views of Eaton and colleagues betray an incomplete perspective on the problems and the solutions. Their comments imply that measurement – and likely documentation and analysis – of variations in patient experience are the key towards planning and delivering improvements. Bench-marking, ‘score-card’ feedback, and indeed incentivisation of good performance against scoring methods are all possible levers for change if measurement is implemented more widely.
However the measurement paradigm misses out a further important influence and barrier to improvement – understanding the culture and day-to-day situation of clinicians. Those who interview for medical or nursing schools, and for training for the range of allied health professions, would attest to the caring aspirations and motivations of would-be students. Are Eaton and colleagues sure that they know what is going wrong after graduation, in the ‘swamp’ of everyday healthcare, that impairs previously motivated and able individuals from providing the quality of care to which they aspired? More than measurement, we need to undertake well-designed mixed methods research, likely principally qualitative, to understand the lived-world experience, limitations and barriers, constraints and competing pressures that are adversely influencing quality of care. In the light of such evidence we may then have a basis for more insightful efforts to improve quality and patient experience.
Fundamentally, the issue is about the nature of leadership to effect change. What is missing in the editorial is a sense of trying to take clinicians with us as we strive to drive up quality and patient experience. If the general clinician workforce, of which I am one, might be regarded as the sheep, the analogy stretches to a consideration of the style of shepherding. In some parts of the world, the shepherd leads (usually) his sheep. In other parts of the world, shepherds follow on behind, perhaps ‘helping’ their sheep to move forward by the ‘facilitation’ of a stick or a dog. Both may be effective, but we have a very large flock of clinicians in healthcare, and here we have yet to show the most effective way of shepherding them to the pastures of greater quality and better patient experiences.
The measurement paradigm is part of the ‘stick’ approach, but may be at risk of failing to understand, recognise and utilise the clinician perspective, and ultimately be at risk of failure. Given that healthcare is not like a restaurant or a retailer in the marketplace, to which Eaton and colleagues refer (1), there needs to be greater consideration of the problems and issues for everyday clinicians trying to deliver (at least reasonable) quality care and patient experiences. It is likely that the ‘stick’ approach needs to be complemented by more positive leadership that takes clinicians forward with it, harnessing their motivations and trying to overcome the barriers to wider adoption of patient involvement and participation that would improve the experience of healthcare for patients and carers.
1. Eaton S, Collins A, Coulter A, Elwyn G, Grazin N, Roberts S. Putting patients first: NICE guidance on the patient expereince is a welcome small step on a long journey. British Medical Journal. 2012;344:e2006.
2. O'Flynn N, Staniszewska S, Guideline Development Group. Improving the experience of care for people using NHS services: summary of NICE guidance. British Medical Journal. 2012;344:d6422.
Competing interests: No competing interests