Read standard 1: Person-centred care and shared decision making

Rationale

A general principle of all healthcare is that people report positive experiences and outcomes when they are fully informed and involved in shared decision making.⁶, ⁷, ⁹ People are empowered when they are supported to describe what matters to them and are respected and listened to.⁶ Inclusive, compassionate and respectful communication is essential to support people in their gender identity healthcare.¹⁰ This includes addressing people using language that feels respectful and comfortable for them, for example their chosen name and pronouns.

A person’s gender identity is a personal experience, and people are experts in their own experiences and needs.⁶ This standard applies to all adults and young people who are questioning their gender identity, undergoing transition including retransition, detransition or have completed transition.

A holistic and person-centred approach includes being responsive to the person’s needs, providing time for discussion and decision making. People can expect that organisations and staff uphold patient rights, adhere to NHSScotland values and provide safe, appropriate and person-centred care.⁹, ¹¹^-¹³ This ensures that people can discuss their needs, readiness to access care, concerns and options with empathetic, well-informed, compassionate and unbiased staff.⁹, ¹⁴, ¹⁵

Organisations should have person-centred protocols to support people who decide to pause, change or reverse aspects of their gender identity healthcare. People should be appropriately supported in their decisions.

Evidence highlights that lack of information on service access and treatment options can contribute to continued distress.² Access to high-quality and accurate information supports informed decision making.¹⁶, ¹⁷ Information should be provided in a range of formats and languages, which reflects the needs of the person. The format should take account of age, psychological, social, cultural and spiritual factors. Information and discussions should be delivered in a way that is inclusive of everyone, including people with learning or developmental disabilities.

People, and their choice of representative where appropriate, should be appropriately signposted to other health and social care services or third sector organisations for ongoing support and care.

Who is responsible for meeting this standard?

All organisations and staff in line with their roles, responsibilities and workplace setting.

Criteria

1.1

People are:

fully informed, listened to and taken seriously
recognised and respected as experts in their own care, needs and preferences, including chosen name and pronouns.

1.2

People are supported to develop the knowledge, skills and confidence to manage their own care including medication, as appropriate.

1.3

People can discuss with kind, empathetic, well-informed, compassionate and unbiased staff:

their needs, concerns and care
their readiness to access gender identity healthcare.

1.4

Where appropriate, the person’s families/representatives are informed and involved in discussions and decisions.

1.5

People have access to:

timely and high-quality information about gender identity services that meets their communication or support needs, or circumstances
a summary of their medical history and care plan
their records, relevant information about themselves and their care, if requested.

1.6

Organisations use a person-centred and trauma informed approach ensuring that people are actively enabled and supported to:

participate in shared decision making at all stages of their care including pausing, changing or reversing aspects of treatment
understand the risks and benefits of any treatment and intervention in line with the current evidence base and best practice
have time for consideration and given opportunities to discuss options, raise questions or concerns
provide informed consent at key decision points in line with national
guidance¹⁸, ¹⁹
provide feedback on their care and experiences.

1.7

Organisations provide people and, where appropriate, their families/representatives, with:

information and support that is relevant to their language, age, understanding, circumstances and care plans
information about gender identity services, including who to contact and how to be referred
signposting to other healthcare services
signposting to third sector organisations including peer support.

1.8

Organisations have systems in place to provide, where appropriate and practicable:

coordinated appointments for services
access to remote or in-person consultations or appointments
adequate staff time and resources for extended consultations
updates on anticipated waiting times.

1.9

Organisations have processes in place to support continuity of care including sharing of relevant information across multi-disciplinary and multi-agency teams, where appropriate and in line with information sharing frameworks and consent guidance.

1.10

People are asked their preferred method of communication and this is implemented, where possible.

What does this standard mean for...

What does the standard mean for people?

You will be recognised as an individual.
You will be listened to, respected and taken seriously.
You will be involved in discussions and decisions about your care and support.
You will be supported and respected by staff including use of your chosen name and pronouns.
You can discuss any aspect of services and care, raise questions or concerns and provide feedback.
You will receive information and support about the care and treatment you will be offered.
Information will be provided at the right time, pace and in a language and format that is right for you.
You have the opportunity to involve family or a representative in your care, if you wish.

What does the standard mean for staff?

Staff, in line with roles, responsibilities and workplace setting:

listen and actively engage with people to understand their needs and preferences
take a person-centred and trauma informed approach to planning healthcare that facilitates informed and shared decision making
provide opportunities for people to ask questions about their care
provide empathetic, respectful and compassionate support
signpost to current information and support appropriate to individual needs.

What does the standard mean for the organisation?

Organisations:

have systems and processes in place to provide services, which are responsive and support fully informed and shared decision making in line with Realistic Medicine principles
ensure the availability of appropriate, inclusive, easily accessible and timely information and support
have mechanisms to record and act upon feedback from people, their families/representatives and staff
incorporate professional and good practice guidance in person-centred care including communication skills
work with partners, including specialist gender identity services and the third sector, to ensure people are supported in their decisions
ensure staff have time and resources to support and care for people.

Examples of what meeting this standard might look like

Evidence of the person’s involvement in decision making, the use of tools for shared decision making, consent and effective communication.
• Evidence of information provided in alternative formats and languages, taking account of the needs of people who may be digitally excluded or people with additional communication needs, for example, people with sensory impairments or difficulties with speech and language and learning disabled people.
Specific tailored information for young people, older people, asylum seekers and refugees and people with complex social needs.
Ongoing engagement and feedback from service users on their experiences of accessing care.
Clinical audit of consultations with documentation of signposting or written information being provided.
Quality improvement projects to ensure provision of information about gender identity services alongside other health information in, for example primary care waiting rooms.