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Patient experience in adult NHS services: improving the experience of care for people using adult NHS services
NICE Clinical Guidelines, No. 138
This guideline is the basis of QS15.
Overview
This guideline covers the components of a good patient experience. It aims to make sure that all adults using NHS services have the best possible experience of care.
In June 2021 the recommendations on shared decision making were replaced by NICE’s guideline on shared decision making.
Recommendations
This guideline includes recommendations on:
- enabling patients to actively participate in their care, including communication and information.
Who is it for?
- Healthcare professionals
- Non-clinical staff who come into contact with patients (for example, receptionists, clerical staff and domestic staff)
- People using adult NHS services and their families and carers
Is this guideline up to date?
We reviewed the evidence in August 2016. We found nothing new that affects the recommendations in this guideline.
Guideline development process
Introduction
Over the past few years, several documents and initiatives have highlighted the importance of the patient’s experience and the need to focus on improving these experiences where possible.
Lord Darzi’s report High quality care for all (2008) highlighted the importance of the entire patient experience within the NHS, ensuring people are treated with compassion, dignity and respect within a clean, safe and well-managed environment.
The development of the NHS Constitution (2009 to 2010) was one of several recommendations from Lord Darzi’s report. The Constitution describes the purpose, principles and values of the NHS and illustrates what staff, patients and the public can expect from the service. Since the Health Act came into force in January 2010, service providers and commissioners of NHS care have had a legal obligation to take the Constitution into account in all their decisions and actions.
The Equality Act 2010 replaces all previous anti-discrimination legislation, and includes a public sector equality duty requiring public bodies to have due regard to the need to eliminate discrimination and to advance equality of opportunity and foster good relations between people who share certain protected characteristics and those who do not. The protected characteristics are age, disability, gender reassignment, pregnancy and maternity, race, religion or belief, sex and sexual orientation. The Act provides an important legal framework which should improve the experience of all patients using NHS services.
Despite these policy initiatives, there is evidence to suggest that further work is needed to deliver the best possible experience for users of NHS services. The Government signalled in its 2010 White Paper (Equity and excellence: liberating the NHS, Department of Health and Social Care) that more emphasis needs to be placed on improving patients’ experience of NHS care.
This guidance is a direct referral from the Department of Health. It focuses on generic patient experiences and is relevant for all people who use adult NHS services in England and Wales. The aim of the guidance is to provide the NHS with clear guidance on the components of a good patient experience. This guidance provides the evidence and the direction for creating sustainable change that will result in an ‘NHS cultural shift’ towards a truly patient-centred service.
A NICE quality standard for patient experience in adult NHS services has been developed alongside this guidance. NICE quality standards are a set of specific, concise statements and associated measures. They set out aspirational, but achievable, markers of high-quality, cost-effective care.
Quality standards are derived from the best available evidence and address three dimensions of quality: clinical effectiveness, patient safety and patient experience.
NICE clinical guidelines are usually shaped around both clinical and economic evidence, and include recommendations concerned with ensuring a good patient experience, with the recognition that such advice should sit alongside evidence of clinical and cost effectiveness. The recommendations in the current guidance have been informed by research evidence, recommendations in previously published NICE clinical guidelines, national survey data and consensus processes that have identified the key elements that are important to patients and how these can be improved to ensure a good experience of care. The guidance draws on multiple evidence and data sources in developing the recommendations.
The recommendations in this guidance are directed primarily at clinical staff, but patient experience is also significantly affected by contacts with non-clinical staff such as receptionists, clerical staff and domestic staff. Services need to ensure that non-clinical staff are adequately trained and supported to engage with patients in ways that enhance the patient experience.
Taken together, the recommendations in this guidance capture the essence of a good patient experience. Their implementation will help to ensure that healthcare services are acceptable and appropriate, and that all people using the NHS have the best possible experience of care.
1. Guidance
The following guidance is based on the best available evidence. The full guideline gives details of the methods and the evidence used to develop the guidance.
People have the right to be involved in discussions and make informed decisions about their care, as described in making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
1.1. Knowing the patient as an individual
Patients value healthcare professionals acknowledging their individuality and the unique way in which each person experiences a condition and its impact on their life. Patients’ values, beliefs and circumstances all influence their expectations of, their needs for and their use of services. It is important to recognise that individual patients are living with their condition, so the ways in which their family and broader life affect their health and care need to be taken into account.
- 1.1.1.
Develop an understanding of the patient as an individual, including how the condition affects the person, and how the person’s circumstances and experiences affect their condition and treatment.
- 1.1.2.
Ensure that factors such as physical or learning disabilities, sight, speech or hearing problems and difficulties with reading, understanding or speaking English are addressed so that the patient is able to participate as fully as possible in consultations and care.
- 1.1.3.
Ask the patient about and take into account any factors, such as their domestic, social and work situation and their previous experience of healthcare, that may:
- impact on their health condition and/or
- affect their ability or willingness to engage with healthcare services and/or
- affect their ability to manage their own care and make decisions about self-management and lifestyle choices.
- 1.1.4.
Listen to and address any health beliefs, concerns and preferences that the patient has, and be aware that these affect how and whether they engage with treatment. Respect their views and offer support if needed to help them engage effectively with healthcare services and participate in self-management as appropriate.
- 1.1.5.
Avoid making assumptions about the patient based on their appearance or other personal characteristics.
- 1.1.6.
Take into account the requirements of the Equality Act 2010 and make sure services are equally accessible to, and supportive of, all people using adult NHS services.
- 1.1.7.
If appropriate, discuss with the patient their need for psychological, social, spiritual and/or financial support. Offer support and information to the patient and/or direct them to sources of support and information. Review their circumstances and need for support regularly.
1.2. Essential requirements of care
Patients have needs other than the treatment of their specific health conditions. There should be recognition of the potential need for psychological and emotional support, as well as of the importance of meeting fundamental needs such as nutrition and pain management. Attention to these fundamental needs applies particularly to inpatient settings, but they should also be addressed in other settings where healthcare is provided.
Respect for the patient
- 1.2.1.
All staff involved in providing NHS services (including chaplains, domestic staff, porters, receptionists and volunteers) should:
- treat patients with respect, kindness, dignity, compassion, understanding, courtesy and honesty
- respect the patient’s right to confidentiality
- not discuss the patient in their presence without involving them in the discussion.
- 1.2.2.
Introduce students and anyone not directly involved in the delivery of care before consultations or meetings begin, and let the patient decide if they want them to stay.
Patient concerns
- 1.2.3.
Be prepared to raise and discuss sensitive issues (such as sexual activity, continence or end-of-life care), as these are unlikely to be raised by some patients.
- 1.2.4.
Listen to and discuss any fears or concerns the patient has in a non-judgemental and sensitive manner.
- 1.2.5.
If anxiety disorder or depression is suspected, follow the appropriate stepped-care model recommended in:
Nutrition, pain management and personal needs
- 1.2.6.
All healthcare professionals directly involved in patient care should receive education and training, relevant to their post, on the importance of:
- providing adequate and appropriate nutrition
- assessing and managing pain.
- 1.2.7.
Ensure that the patient’s nutrition and hydration are adequate at all times, if the patient is unable to manage this themselves, by:
- providing regular food and fluid of adequate quantity and quality in an environment conducive to eating
- placing food and drink where the patient can reach them easily
- encouraging and helping the patient to eat and drink if needed
- providing appropriate support, such as modified eating and/or drinking aids.
- 1.2.8.
If a patient is unable to manage their own pain relief:
- do not assume that pain relief is adequate
- ask them regularly about pain
- assess pain using a pain scale if necessary (for example, on a scale of 1 to 10)
- provide pain relief and adjust as needed.
- 1.2.9.
Ensure that the patient’s personal needs (for example, relating to continence, personal hygiene and comfort) are regularly reviewed and addressed. Regularly ask patients who are unable to manage their personal needs what help they need. Address their needs at the time of asking and ensure maximum privacy.
Patient independence
- 1.2.10.
Give patients using adult NHS services the support they need to maintain their independence as far as possible.
- 1.2.11.
When patients in hospital are taking medicines for long-term conditions, assess and discuss with them whether they are able and would prefer to manage these medicines themselves.
Consent and capacity
- 1.2.12.
Obtain and document informed consent from the patient, in accordance with:
- in England, Department of Health policy and guidance
- in Wales, advice from the Welsh Government.
- 1.2.13.
Assess the patient’s capacity to make each decision using the principles in the Mental Capacity Act (2005).
1.3. Tailoring healthcare services for each patient
Patients wish to be seen as an individual within the healthcare system. This requires healthcare professionals to recognise the individual, and for services to be tailored to respond to the needs, preferences and values of the patient. Advice on treatments and care, including risks and benefits, should be individualised as much as possible.
An individualised approach to services
- 1.3.1.
Adopt an individualised approach to healthcare services that is tailored to the patient’s needs and circumstances, taking into account their ability to access services, personal preferences and coexisting conditions. Review the patient’s needs and circumstances regularly.
- 1.3.2.
Inform the patient about healthcare services and social services (for example, smoking cessation services) that are available locally and nationally. Encourage and support them to access services according to their individual needs and preferences.
- 1.3.3.
Give the patient information about relevant treatment options and services that they are entitled to, even if these are not provided locally.
Patient views and preferences
- 1.3.4.
Hold discussions in a way that encourages the patient to express their personal needs and preferences for care, treatment, management and self-management. Allow adequate time so that discussions do not feel rushed.
- 1.3.5.
Review with the patient at intervals agreed with them:
- their knowledge, understanding and concerns about their condition and treatments
- their view of their need for treatment.
- 1.3.6.
Accept that the patient may have different views from healthcare professionals about the balance of risks, benefits and consequences of treatments.
- 1.3.7.
Accept that the patient has the right to decide not to have a treatment, even if you do not agree with their decision, as long as they have the capacity to make an informed decision (see recommendation 1.2.13) and have been given and understand the information needed to do this.
- 1.3.8.
Respect and support the patient in their choice of treatment, or if they decide to decline treatment.
- 1.3.9.
Ensure that the patient knows that they can ask for a second opinion from a different healthcare professional, and if necessary how they would go about this.
Involvement of family members and carers
- 1.3.10.
Clarify with the patient at the first point of contact whether and how they would like their partner, family members and/or carers to be involved in key decisions about the management of their condition. Review this regularly. If the patient agrees, share information with their partner, family members and/or carers.
- 1.3.11.
If the patient cannot indicate their agreement to share information, ensure that family members and/or carers are kept involved and appropriately informed, but be mindful of any potentially sensitive issues and the duty of confidentiality.
Feedback and complaints
- 1.3.12.
Encourage the patient to give feedback about their care. Respond to any feedback given.
- 1.3.13.
If necessary, provide patients with information about complaints procedures and help them to access these.
1.4. Continuity of care and relationships
Continuity and consistency of care and establishing trusting, empathetic and reliable relationships with competent and insightful healthcare professionals is key to patients receiving effective, appropriate care. Relevant information should be shared between professionals and across healthcare boundaries to support high-quality care.
- 1.4.1.
Assess each patient’s requirement for continuity of care and how that requirement will be met. This may involve the patient seeing the same healthcare professional throughout a single episode of care, or ensuring continuity within a healthcare team.
- 1.4.2.
For patients who use a number of different services (for example, services in both primary and secondary care, or attending different clinics in a hospital), ensure effective coordination and prioritisation of care to minimise the impact on the patient.
- 1.4.3.
Ensure clear and timely exchange of patient information:
- between healthcare professionals (particularly at the point of any transitions in care)
- between healthcare and social care professionals in line with the Health and Social Care (Safety and Quality) Act 2015.
- 1.4.4.
All healthcare professionals directly involved in a patient’s care should introduce themselves to the patient.
- 1.4.5.
Inform the patient about:
- who is responsible for their clinical care and treatment
- the roles and responsibilities of the different members of the healthcare team
- the communication about their care that takes place between members of the healthcare team.
- 1.4.6.
Give the patient (and their family members and/or carers if appropriate) information about what to do and who to contact in different situations, such as ‘out of hours’ or in an emergency.
1.5. Enabling patients to actively participate in their care
Many patients wish to be active participants in their own healthcare, and to be involved in creating and managing their health strategy and use of services. Self-care and self-management are particularly important for people with long-term conditions.
Communication
- 1.5.1.
Ensure that the environment is conducive to discussion and that the patient’s privacy is respected, particularly when discussing sensitive, personal issues.
- 1.5.2.
Maximise patient participation in communication by, for example:
- maintaining eye contact with the patient (if culturally appropriate)
- positioning yourself at the same level as the patient
- ensuring that the patient is appropriately covered (if applicable).
- 1.5.3.
Ask the patient how they wish to be addressed and ensure that their choice is respected and used.
- 1.5.4.
Establish the most effective way of communicating with each patient and explore ways to improve communication. Examples include using pictures, symbols, large print, Braille, different languages, sign language or communications aids, or involving an interpreter, a patient advocate or family members.
- 1.5.5.
Ensure that the accent, use of idiom and dialect of both the patient and the healthcare professionals are taken into account when considering communication needs.
- 1.5.6.
Avoid using jargon. Use words the patient will understand, define unfamiliar words and confirm understanding by asking questions.
- 1.5.7.
Use open-ended questions to encourage discussion.
- 1.5.8.
Summarise information at the end of a consultation and check that the patient has understood the most important information.
- 1.5.9.
Offer the patient copies of letters between healthcare professionals. These should be in a form that is accessible to the patient and if possible use language that they will understand. Answer any questions the patient may have about these.
- 1.5.10.
All staff involved in providing NHS services should have demonstrated competency in relevant communication skills.
Information
- 1.5.11.
Give the patient information, and the support they need to make use of the information, in order to promote their active participation in care and self-management.
- 1.5.12.
Give the patient both oral and written information.
- 1.5.13.
Give the patient information in an accessible format, at the first and subsequent visits. Possible formats include using written information, pictures, symbols, large print, Braille and different languages.
- 1.5.14.
Explore the patient’s preferences about the level and type of information they want. Based on this, give the patient (and their family members and/or carers if appropriate) clear, consistent, evidence-based, tailored information throughout all stages of their care. This should include, but not be limited to, information on:
- their condition and any treatment options
- where they will be seen
- who will undertake their care
- expected waiting times for consultations, investigations and treatments.
- 1.5.15.
Ensure that mechanisms are in place to:
- provide information about appointments to patients who require information in non-standard formats
- alert services of any need for interpreters and non-standard formats to be available when patients move between services.
- 1.5.16.
Ask the patient whether they want to be accompanied at consultations by a family member, friend or advocate, and whether they would like to take notes and/or an audio recording of the consultation.
- 1.5.17.
Give the patient (and/or their family members and carers) information to enable them to use any medicines and equipment correctly. Ensure that the patient and their family members and carers feel adequately informed, prepared and supported to use medicines and equipment and to carry out self-care and self-management.
- 1.5.18.
Advise the patient where they might find reliable high-quality information and support after consultations, from sources such as national and local support groups, networks and information services.
- 1.5.19.
Give the patient regular, accurate information about the duration of any delays during episodes of care.
Shared decision making
Recommendations 1.5.20 to 1.5.27 have been replaced by NICE’s guideline on shared decision making.
- 1.5.20.
Deleted.
- 1.5.21.
Deleted.
- 1.5.22.
Deleted.
- 1.5.23.
Deleted.
- 1.5.24.
Deleted.
- 1.5.25.
Deleted.
- 1.5.26.
Deleted.
- 1.5.27.
Deleted.
Education programmes
- 1.5.28.
Ensure that patient-education programmes:
- are evidence-based
- have specific aims and learning objectives
- meet the needs of the patient (taking into account cultural, linguistic, cognitive and literacy considerations)
- promote the patient’s ability to manage their own health if appropriate.
- 1.5.29.
Give the patient the opportunity to take part in evidence-based educational activities, including self-management programmes, that are available and meet the criteria listed in recommendation 1.5.28.
Finding more information and committee details
You can see everything NICE says on this topic in the NICE Pathway on patient experience in adult NHS services.
To find NICE guidance on related topics, including guidance in development, see our topic page for patient and service user care.
For full details of the evidence and the guideline committee’s discussions, see the full guideline. You can also find information about how the guideline was developed, including details of the committee.
NICE has produced tools and resources to help you put this guideline into practice. For general help and advice on putting NICE guidelines into practice, see resources to help you put guidance into practice.
Update information
June 2021: We replaced recommendations 1.5.20 to 1.5.27 on shared decision making with a link to the NICE guideline on shared decision making.
Minor changes since publication
June 2021: We removed appendix A on recommendations adapted from published clinical guidelines.
February 2020: We replaced the quality statements in the guideline with a link to the updated NICE quality standard on patient experience in adult NHS services.
October 2015: We updated recommendation 1.4.3 to cite the Health and Social Care Safety and Quality Act 2015.
Your responsibility: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.
Created: February 24, 2012; Last Update: June 17, 2021.
- NICE Clinical Guideline 138: Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms
- Patient experience in adult NHS services: Evidence Update February 2014: A summary of selected new evidence relevant to NICE clinical guideline 138 'Patient experience in adult NHS services: improving the experience of care for people using adult NHS services' (2012)
- Surveillance report 2016 - Patient experience in adult NHS services: improving the experience of care for people using adult NHS services (2012) NICE guideline CG138
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