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National Clinical Guideline Centre (UK). Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms. London: Royal College of Physicians (UK); 2012 Feb. (NICE Clinical Guidelines, No. 138.)

Cover of Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services

Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms.

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1Setting the scene

The NHS Constitution promotes ‘high quality care for all’. In setting out clearly what Professor Lord Darzi (2008)13 saw as the enduring principles and values of the NHS, the constitution provided clear signposting to the rights and responsibilities for patients, public and staff. Key aspects of this important legislation are:

  • Empowering all patients and the public
  • Empowering and valuing staff
  • Creating shared purpose, values and principles
  • Strengthening accountability through national standards for patients.

Quality as understood from a patient’s perspective was highlighted in the follow up report ‘High Quality Care for All – our journey so far’14. It defined three aspects that matter to patients; their experience, the effectiveness of care interventions and the safe delivery of healthcare. While significant investment has created new learning in relation to clinical effectiveness and safety, our understanding of what matters to patients in relation to their experience of healthcare and how this can be improved is still developing.

The longest running survey of public satisfaction with the NHS is the British Social Attitudes (BSA) survey, which provides indicative trends from a ‘user of healthcare’ perspective. First conducted in 1983, it captures the public’s attitudes in relation to satisfaction, providing a useful proxy measure of what the general population think and feel about what is undoubtedly our most important public service. The latest BSA survey reported that 64% of the British public are either very or quite satisfied with the NHS, which in fact is the highest level achieved over the last 3 decades and is part of an upward trend since 200251. Appleby (2011)3 reinforces the value of the NHS to the general public through the work of Ipsos-Mori’s monthly polling, where it is consistently reported that experience of NHS care remains one of the “most important issues facing Britain today.”38. The concept of satisfaction has been explored in various formats over the last two decades within the NHS; it is now widely acknowledged that it is a poor indicator for evaluating quality from a patient experience perspective. The NHS survey data7 aims to capture multiple dimensions of patient experience and has strengthened evaluation of service delivery and experience, providing insight into areas of healthcare which need focussed improvement. The 2010 adult inpatients survey involved 162 acute NHS trusts in England, with responses from over 66,000 patients, achieved a response rate of 50%.

Despite the improvement in services suggested by surveys, variability of patient experience is well reported33. Patient experience is complex and multi-factorial and includes factors centred on services and individual healthcare professionals and also factors which are individual to each patient. Examples of service factors include access to healthcare services and the quality of information available, while the ability of healthcare professionals to facilitate joint decision making also influence experience. Each patient also brings individual factors such as previous experience. All impact on the quality of individual experience during each patient’s personal journey.

In trying to estimate policy development impact, independent research has shown12,45 the NHS has made good progress in improving the overall quality of care for patients. This initially tended to be focussed on waiting times, staffing levels and physical infrastructure. This failed to explore patient experience as individual recipients of healthcare and establish what is important for them. In a King’s Fund Report (2010, p76)121 reviewing progress made by the NHS over the last decade, in relation to patient experience they establish that there are two particularly weak areas ‘ the need for better information and for more involvement for patients’.

Understanding what provokes individuals to complain and pursue litigation about their experience of healthcare is helpful in informing how we plan and achieve better patient patient experience. Data relating to this is available through the NHS Information Centre97 who report that “the highest percentage of written complaints (42.2% or 42,727) concerned the subject area All aspects of clinical treatment, a 0.8 percentage point increase from 2008–09. This was followed in turn by Attitude of staff (12.2% or 12,331) and Outpatient Appointments, delay/cancellation with 10.6% or 10,710 (12.6% or 11,332 and 10.9% or 9,738 respectively in 2008–09). Given that over 50%, as a crude indicator, of all complaints relate to direct patient interaction with healthcare professionals, this data profile supports the NHS Confederation’s assumption that improving patient experience requires a culture shift96.

The NHS Confederation report 96 establishes that patient experience should examine all aspects of care delivery which includes the individual’s first point of contact. It goes on to establish that “improving the experiences of all patients starts by treating each of them individually to ensure they receive the right care, at the right time, in the right way for them.” The NHS Confederation report explores policy levers that can perhaps bring the intended aim to be realised, by ‘including patient experience as a measurable outcome of care in the NHS outcomes framework, providing incentives through the Commissioning for Quality and Innovation (CQUIN) payment framework, and patient reported outcome measures (PROMs) will all play an important role in helping make patient experience a priority. However, national systems alone will not be the answer. For patients’ experiences to shape services and become a priority for staff, a big cultural shift at many hospitals is needed.’

As an emerging concept, patient experience is establishing itself as a key determinant in informing commissioning decisions and in shaping healthcare delivery. Whilst this may seem obvious, historically the approach to patient involvement has been limited. Since 2000 NICE has emphasised the importance of patient involvement in all aspects of their work programme. With over 700 pieces of guidance produced over the last decade, patients have routinely been involved in independent advisory groups who clinically interpret evidence with their healthcare professional colleagues to form recommendations for practice. Within the context of this work programme, the emphasis has tended to be on what can be done to improve healthcare outcomes through clinical and cost effectiveness recommendations. More latterly, the importance of asking the question ‘how do healthcare interventions and healthcare professionals improve patient experience?’ has emerged. This question has been prioritised by the previous and current Coalition governments, and is the focus of a number of current work streams commissioned by the Department of Health41,95,100,104.

Historically, measures of experience have not been robustly developed or tested, the consequence being potential skewing of data and what should be a cautious approach in responding to this data. Trying to measure quality is by nature complex and multi-factorial (for example: process measures, outcome measures, patient reported outcome measures), but highly relevant when considering how the full impact of this guidance can be realised in time series measurement that will establish sustainable improvement. Inevitably more work is needed in developing more accurate measures that better report patient experience. It is measurement of effect that will lead to sustainable improvement.

This guidance focuses on generic adult patient experiences and is relevant for all people using adult NHS services (excluding mental health services – see guidance for Service user experience in adult mental health). It is unusual in that the guidance is non population and non setting specific, which whilst providing generic guidance does limit the opportunity to be more specific when making recommendations. Key to ‘joining up’ previously published NICE guidelines (particularly over the last five years) the intention was to provide clear directive recommendations that are focused on improving patient experience. The importance of all three contributors to quality reflects the concept of health evaluation first proposed by Professor Sir Richard Doll (1974)17, who argued that health care needs to be evaluated according to three key criteria – clinical effectiveness, economic efficiency and social acceptability. While social acceptability was not defined in detail, recent work has developed this concept into the idea of patient-based evidence, which should sit alongside clinical and economic forms of evidence (Staniszewska et al 2010)117. The value of patients involvement is not a new concept, the revered physician Sir William Osler (1849 – 1919) in a speech marking the opening of an extension to the Boston Medical Library in 1901 said ‘to study the phenomenon of disease without book is to sail an uncharted sea, while to study books without patients is not to go to sea at all.’103. Such evidence is vital in understanding the acceptability, appropriateness and effectiveness of care from the patient perspective. This guidance benefits from multiple evidence and data sources; research evidence, previously published NICE guideline recommendations, national survey data and a consensus processes to develop recommendations. The process has identified key themes to patient experience and resulted in an understanding of how improvements can be made. These recommendations are further distilled into commissioning guidance in a parallel publication - the quality standard for patient experience.

The particular journey that the guidance development group embarked upon has been both challenging and rewarding. Developing guidance in a non clinical topic, non setting and non population specific areas have at times been both demanding and stimulating. In order to capture what is important to patients, we have adopted a pragmatic and often rapid evidence synthesis approach and combined multiple evidence sources to ensure that the guidance accurately reflects the current context. The importance of effective patient involvement within the guidance development group cannot be over emphasised. Patient members together with their healthcare professional colleagues have explored key concepts in determining what the national standard should be, consistent with the NHS constitution. This guidance meets key aspects outlined in the NHS constitution, with particular emphasis on creating a baseline (national standards) from which improvement in the quality of patient experience can be routinely measured. In focussing the scope of this work, it was agreed with NICE that development should not address issues to do with the physical environment where patients receive care, and specific issues to do with patient safety. The full implementation of this guidance is possible if local providers exercise the ‘local freedoms’ that the constitution advocates in pursuit of excellence in the NHS.

Our aim is that this guidance will provide both the evidence for and the direction to create sustainable change that results in a ‘NHS cultural shift’ that is required in order to produce care that is effective, acceptable and appropriate for patients. The cultural shift referred to in this document is about refocusing the attention of all those who deliver NHS services towards key aspects (guidance themes) that patients themselves identify to be important. This guidance provides the evidence and expert consensus base to create sustainable change in directing commissioning and clinician behaviours to meet this challenge.

In being committed to the central position and importance of the individual experience of healthcare, one might naturally ask, ‘what can I do?’ Sir William Osler advises.....’live neither in the past nor in the future, but let each day’s work absorb your entire energies, and satisfy your widest ambition.’102

Summary of key messages and focus for this guidance

This guidance is directed to all NHS services, including primary and community care, e.g. NHS dentistry services as well as district nursing and health visitor services, and hospital inpatient and outpatient care. The guidance is directed to all staff involved in providing NHS services. Many interactions are with clinically trained staff but interaction with non-clinical staff can have a profound effect on patient experience of care. As the guidance is generic in nature we have concentrated on core areas such as staff-patient interaction. There are inevitably a large number of areas not covered and are important for patient experience. Most frameworks of patient experience include the physical environment and access but to enable us to develop guidance in the time available it was agreed with NICE that we would not look at these. There are many groups of patients who have needs beyond those that generic guidance can cover. Patient experience issues specific to particular topics will be covered as usual in topic specific guidance and quality standards.

Many of the recommendations in this guidance overlap with recommendations from policy documents and codes of professional organisations. The inclusion of these items in quality standards will allow the NHS to be held to account for the delivery of these key areas for patient experience.

Copyright © 2012, National Clinical Guideline Centre.

Apart from any fair dealing for the purposes of research or private study, criticism or review, as permitted under the Copyright, Designs and Patents Act, 1988, no part of this publication may be reproduced, stored or transmitted in any form or by any means, without the prior written permission of the publisher or, in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency in the UK. Enquiries concerning reproduction outside the terms stated here should be sent to the publisher at the UK address printed on this page.

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Bookshelf ID: NBK115235

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