The following guidance is based on the best available evidence. The full guidance 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.
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.
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.
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.
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:
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.
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.
1.2.12 Obtain and document informed consent from the patient, in accordance with:
1.2.13 Assess the patient's capacity to make each decision using the principles in the Mental Capacity Act (2005).
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.
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.
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.
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.
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.
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.
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.
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.
1.5.20 When discussing decisions about investigations and treatment, do so in a style and manner that enables the patient to express their personal needs and preferences.
1.5.21 Give the patient the opportunity to discuss their diagnosis, prognosis and treatment options.
1.5.22 When offering any investigations or treatments:
explain the medical aims of the proposed care to the patient
openly discuss and provide information about the risks, benefits and consequences of the investigation or treatment options (taking into account factors such as coexisting conditions and the patient's preferences)
clarify what the patient hopes the treatment will achieve and discuss any misconceptions with them
set aside adequate time to allow any questions to be answered, and ask the patient if they would like a further consultation.
1.5.23 Accept and acknowledge that patients may vary in their views about the balance of risks, benefits and consequences of treatments.
1.5.24 Use the following principles when discussing risks and benefits with a patient:
personalise risks and benefits as far as possible
use absolute risk rather than relative risk (for example, the risk of an event increases from 1 in 1,000 to 2 in 1,000, rather than the risk of the event doubles)
use natural frequency (for example, 10 in 100) rather than a percentage (10%)
be consistent in the use of data (for example, use the same denominator when comparing risk: 7 in 100 for one risk and 20 in 100 for another, rather than 1 in 14 and 1 in 5)
present a risk over a defined period of time (months or years) if appropriate (for example, if 100 people are treated for 1 year, 10 will experience a given side effect)
include both positive and negative framing (for example, treatment will be successful for 97 out of 100 patients and unsuccessful for 3 out of 100 patients)
be aware that different people interpret terms such as rare, unusual and common in different ways, and use numerical data if available
think about using a mixture of numerical and pictorial formats (for example, numerical rates and pictograms).
1.5.25 Offer support to the patient when they are considering options. Use the principles of shared decision making:
ensure that the patient is aware of the options available and explain the risks, benefits and consequences of these
check that the patient understands the information
encourage the patient to clarify what is important to them, and check that their choice is consistent with this.
1.5.26 Be aware of the value and availability of patient decision aids and other forms of decision support such as counselling or coaching. If suitable high-quality decision aids are available, offer them to the patient.
1.5.27 Give the patient (and their family members and/or carers if appropriate) adequate time to make decisions about investigations and treatments.
1.5.28 Ensure that patient-education programmes:
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.