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Patient and carer information policy

Contents

  1. Introduction
  2. Purpose
  3. Scope
  4. Responsibilities, accountabilities and duties
  5. Procedure or implementation
  6. Training implications
  7. Monitoring arrangements
  8. Equality impact assessment screening
  9. Links to any other associated documents
  10. References
  11. Appendices

1 Introduction

The clinical care provided within the NHS environment should be of the highest quality supported by robust policies and procedures which are clear and accessible for all. The availability of high quality and accessible information underpins effective communication between colleagues, and those accessing our services.

The purpose of providing relevant, up to date, accurate and high-quality information to patients and carers is to:

  • support people to make informed choices about their care and treatment
  • improve understanding about the services available
  • support the process of gaining informed consent (written information can support but not replace a dialogue with a patient or carer about their individual care)
  • provide all people who need to use the trust’s services with equal access to information
  • provide information regarding lifestyle changes or choices

The information needs of those accessing our services and their preferred methods of communication must always be considered by trust colleagues when preparing information.

The ‘accessible information standard’ directs and defines a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of people accessing our services.

The standard is a legal requirement and applies to service providers across the NHS and adult social care system. Effective implementation will require organisations to make changes to policy, procedure, human behaviour and, where applicable, electronic systems. Organisations must follow the Standard and complete five distinct stages or steps leading to the achievement of five clear outcomes:

  1. identification of needs
  2. recording of needs
  3. flagging of needs
  4. sharing of needs
  5. meeting of needs

1.1 Patient and carer information

  • Information between medical, non-medical, other professionals, patients and carers around suggested treatment options, the benefits of these and any alternatives available.
  • This may be written, verbal, in British sign language (BSL) on internal and external websites or DVD etc.
  • Information provided before the start of any treatment or service on conditions and the effects on the individual, the proposed treatment or service and any ‘side effects’, plus alternative treatments or services, given face to face and, or in writing or BSL.
  • Information to patients and carers on other places of Support and advice provided by the trust and external organisations.
  • Information between medical, non-medical, other professionals, patients and carers around suggested treatment options, the benefits of these and any alternatives available. This may be written, verbal, in British sign language (BSL) on internal and external websites or DVD etc.
  • Information provided before the start of any treatment or service on conditions and the effects on the individual, the proposed treatment or service and any ‘side effects’, plus alternative treatments or services, given face to face and, or in writing or BSL.
  • Information to patients and carers on other places of support and advice provided by the trust and external organisations.
  • Information on the services provided, for example:
    • contact details
    • opening times
    • visiting times
    • roles of staff involved in an individual’s care including interpreting services
    • other additional services for easy access to information
  • How to raise concerns and, or how to complain and information on their rights.

1.2 Examples of patient and carer information

  • Notice board displays in clinical, waiting and public areas.
  • Written and pictorial signs.
  • Posters.
  • Fact sheets.
  • Leaflets on specific conditions (produced externally or internally).
  • Leaflets on assessments or treatments or procedures (produced externally or internally).
  • Leaflets on services (produced externally or internally).
  • Leaflets on rights (produced externally or internally).
  • Trust website.
  • Self-help information (produced externally or internally).
  • Signage.
  • Contact details of a team or service.

2 Purpose

The purpose of this policy is to set out the arrangements for managing the risks associated with patient and carer information and standards for the development of written information to allow people to make an informed choice in relation to their care.

It sets out the steps staff should take when identifying or developing information for patients and carers and provides guidance on best practice.

The policy:

3 Scope

The contents of this policy apply to all trust colleagues and any contracted staff working within services including students, bank staff, volunteers and agency.

The policy covers:

  • the development and provision of information produced for circulation in either electronic or paper format and the monitoring of patient and carer information

This includes:

  • how information is used to support decision-making, including risks, benefits and alternatives
  • information for people where English is not their first language, or they have difficulty reading (this may mean providing interpreters and, or audio tapes and visual information)
  • where a person’s disability means they need to use different forms of communication, such as the use of symbols
  • making information available in easy read as an alternative where possible

4 Responsibilities, accountabilities and duties

4.1 Board of directors

The board of directors has responsibility for the implementation of this policy and the monitoring of compliance.

The executive director of nursing and allied health professionals has lead responsibility for information for patients and will provide periodic updates to the board of directors in relation to the information provided by the trust.

4.2 Care group directors, deputy care group directors or care group nurse directors, head of corporate services and modern matrons

Care group directors, deputy care group directors or care group nurse directors, heads of corporate services and modern matrons are responsible for the dissemination and implementation of this policy within their departments.

4.2.1 Deputy care group directors and modern matrons

  • Identifying the core set of information applicable to their service area. This should be done in collaboration with patients and carers through care group governance groups, focus groups, other meetings, questionnaires, surveys, participation activities and working closely with partners, Communications team, PALS (patient advisory liaison service) and the Patient Experience team.
  • Agreeing preferred formats for accessing information such as printed or web based, and how information will be distributed. For example, utilising video, phone, Zoom, Microsoft Teams and other accessible platforms appropriate for the group of people accessing our services.
  • Identifying if the required information is available through established external sources.
  • Compliance for all trust produced patient and carer information with trust corporate identity and the “Get it write” guidance (appendix A).
  • Keeping information up to date, accurate and presented to standards in accordance with this policy.
  • Ensuring material displayed in service area of responsibility complies with this policy.
  • Ensuring colleagues record verbal, written or signed (BSL) information which is given to people in the patients’ notes. If a challenge is made to the consent process or treatment, information documented as having been provided to the patient or carer at the time needs to be determined.
  • Ensuring information is presented in a non-discriminating and inclusive way by working in partnership with external networks and partners to make sure the correct documentation is used, ensure information is current and appropriate for diverse groups.

4.3 Care co-ordinators and lead professionals

It is the responsibility of care co-ordinators and lead professionals to:

  • ensure that patient and carers (where the person has consented to their involvement in their care) communication needs have been documented, and that information is presented in an accessible manner
  • make information available to support patients and carers to make informed choices about their care and treatment
  • use information in support of dialogue to obtain informed consent, as set out in the trust’s care programme approach (CPA) policy, also consider the CPA for the learning and disability community and inpatients services and not just within the community mental health framework
  • ensure patients and carers know how to complain and have information on their rights, make a complaint, RDaSH NHS Foundation Trust

4.4 All colleagues

All trust colleagues should be aware that high quality and accessible information underpins effective communication between carers and patients and supports the delivery of high-quality care and services.

4.5 Equality Diversity Inclusion and Participation team

Supporting the care groups to facilitate patient carer and public consultation events as required. In a structured and timely manner aligned with ladder of participation (appendix B), embed a set timeframe of engaging with patients and carers which is clear and transparent so carers and patients are clear of expected outcomes and how these will be fed back to them.

4.6 Communications department

The Communication steam works with teams across the trust to produce and design information leaflets for patients, carers and family and friends. They ensure new leaflets are uploaded to the website, with support from the EDI and P team.

5 Procedure or implementation

5.1 Principles for producing patient and carer information

  • Information should be in a language, style and format which makes it easily accessible to the intended audience. A glossary should be included where clinical terms are used. No jargon.
  • The audience may include (but not be exclusively made up of) people with specific needs, for example, people who do not speak English as a first language, people who use British sign language, people with auditory processing disorders and literacy challenges and people with physical and learning disabilities and non-gender bias language. Information should be produced in the appropriate medium for the intended audience.
  • Processes should be in place to allow for materials to be made available in different formats (such as electronic, large print, audio tape, CD or in other languages), EDI and P team will support the delivery of this requirement with support from Patient Experience team where necessary. These alternative methods should be actionable on request, and the ability to request alternatives widely publicised.
  • Information should be sensitive to the religious or cultural needs of all people, avoiding stereotypes.
  • Information should be easily available. Managers should identify how information will be made available to the intended audience before the information is produced.

5.2 Minimum requirements for patient and carer information

  • clinical services should, as a minimum, have information available about their services and on all common conditions, the treatments available and sources of self-help advice and support. Non-clinical services should have relevant information available to patients which relates to the services they offer
  • it is essential that information associated with care, treatments, medication, therapies and procedures should include risks, benefits, side effects and alternatives, where appropriate, this will help people to make choices (see section 5.3)
  • information on rights, confidentiality, and, or how to complain should be included where appropriate

Information produced by the trust should:

  • comply with the trust’s corporate identity and “Get it write” guidelines
  • give an accurate reflection of services and help people understand what to expect when they are in contact with different elements of the service
  • contain accurate contact details (addresses and phone numbers) for services and a directional map, including public transport routes, if appropriate
  • signpost people to other sources of information if relevant
  • signpost people to someone they can talk to for more information or about any questions. Job titles should be used here, not staff names

5.3 How information is provided to patient to support their decision-making, including risks, benefits and alternatives

5.3.1 Assessment

As part of the initial assessment of all patients, the need for information in the best format, style, medium and language to meet their needs should be identified and recorded. Also refer to the interpreters policy (provision, access and use of, for patients, service users and carers).

5.3.2 How the discussion and provision of information to patients and carers is recorded

A record of verbal, written or visual language information which is given to patients and carers should be entered in the health record. If a challenge is made to the consent process or treatment, the information documented as having been provided to the patient at the time needs to be determined. Compliance with this will be monitored by the annual records audit.

5.3.3 Archiving arrangements for any information given to patients to support their decision-making

Any information given to patients and carers to support their decision-making should be archived with the patient’s health record.

5.3.4 Procedure for developing information leaflets

The first course of action is to identify whether the information is needed, and staff should consider the following:

  • review the leaflets on the RDaSH website to see if the information is already available and in a suitable format?
  • if not, do any other organisations have a leaflet which can be adapted for use within the trust? If using another organisation’s leaflet, copyright permission must be obtained. If the leaflet is to be redesigned in the RDASH style it will still need to go through “Get it write” checking procedures
  • have alternatives been explored, such as printing off information from the internet?
  • has approval been given by the deputy care group directors and corporate heads of service for the leaflet to be produced?
  • is there funding available to produce the information?
  • does the information need to be produced in hard copy format, or can it be held electronically and printed as required?
  • consideration should be given to accessibility needs for both electronic and paper copies, for example, print size, paper colour etc.
  • consideration should be given to readability of any information. The Flesch reading ease readability score can be checked on Word documents (opens in new window).

If there is not the appropriate information available either within the service, or from the RDaSH website or from a reliable external source there may be a need to develop an information leaflet, further support and guidance can be obtained from Communications and EDI and P team.

When undertaking translation work for documents and leaflets our 3rd party supplier can be utilised with support from our Equality, Diversity, Inclusion and Participation team. Our patient advice and liaison service coordinator will ensure that any written material that requires translation is available to be shared with patients and carers all costs relating to translated materials will be paid for by the trust.

Please note, where translation of any document that contains personal details all personal details should be anonymised to protect the identity of the individual(s).

If this is the case the “Get it write” process set out in appendix A must be followed.

5.3.5 Funding the development of information

There is no central budget within the trust for the development of patient and carer information leaflets, so each care group will need to identify funding from their allocated budget. This will need to be authorised by the relevant budget holder.

The trust does not allow commercial sponsorship of leaflets, for use within the trust, as it could compromise the integrity of the information which is being provided. Where services are delivered in partnership with other non-commercial organisations information leaflets may be deemed acceptable provided they meet the trust’s “Get it write” criteria.

5.3.6 Distributing the information

When developing patient and carer information, colleagues need to be clear how the information will be distributed, and consideration given to the following points:

  • will colleagues be responsible for distributing the leaflet, and if so when is the leaflet to be given out?
  • are copies of the leaflet to be made available in a leaflet rack?
  • is the leaflet to be sent out with appointment letters?
  • what other events are taking place where information can be distributed?
  • link in with trust partners, community and voluntary organisations, peer support workers, volunteers, and EDI and P activities, networks and activities where appropriate

5.3.7 Review of the information

Any information which is produced by the trust should be reviewed every two years following publication, unless there is a change to legislation, practice or contact details which prompts an earlier review. To assist in the review, all leaflets or posters will contain details of the date it was first produced, and a review date. Responsibility for keeping track of review dates lies with each service area.

When undertaking a review or update the reviewer should consider whether the information is:

  • being used and meeting the needs of its target audience
  • still accurate and appropriate
  • up to date in relation to any new research or practice guidance

If any information leaflets are beyond their review date they should be taken out of circulation until reviewed and reissued.

5.3.8 Trust arrangements for the archiving of leaflets or posters

All approved information leaflets or posters within the trust have been produced by the Communications team and an electronic copy retained by them for archiving purposes. Only the latest copy of the leaflet is kept by the communications team. All other versions of the leaflet should be archived within the originating service area.

6 Training implications

There are no specific training needs in relation to this policy, but all colleagues that have direct contact with patients and carers and any other individual or group with a responsibility for implementing the contents of this policy will need to be familiar with its contents.

6.1 All staff

  • How often should this be undertaken: As and when required.
  • Length of training: Individual needs.
  • Delivery method: Local induction.
  • Training delivered by whom: Line manager.
  • Where are the records of attendance held: Local induction record.

As a trust policy, all staff need to be aware of the key points that the policy covers. Staff can be made aware through a variety of means such as:

  • all user emails for urgent messages
  • one to one meetings or supervision
  • continuous professional development sessions
  • posters
  • daily email (sent Monday to Friday)
  • practice development days
  • group supervision
  • special meetings
  • intranet
  • team meetings

7 Monitoring arrangements

7.1 How information is provided to patients to support their decision-making, including risk, benefits and alternatives

  • How: Clinical records audit.
  • Who by: Clinical audit department.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: Annual.

7.2 How the discussion and provision of information to patients is recorded

  • How: Clinical records audit.
  • Who by: Clinical audit department.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: Annual.

7.3 Archiving arrangements for any information given to patients to support their decision-making

  • How: Clinical records audit.
  • Who by: Clinical audit department.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: Annual.

7.4 Quality or availability of information provided to patients, any occasions when it was not possible to engage the service of an appropriate translation

  • How: Thematic analysis of complaints and claims in QSIR.
  • Who by: Complaints manager. Claims manager.
  • Reported to: Quality and safety sub committee and EDI and P workstream.
  • Frequency: Quarterly and annually.

7.5 Quality or availability of information provided to patients, any occasions when it was not possible to engage the service of an appropriate translation

  • How: Informal feedback and information requests from patients
  • Who by: PALS coordinator.
  • Reported to: Quality and safety sub committee and EDI and P workstream.
  • Frequency: Ongoing.

7.6 Quality or availability of information provided to patients, any occasions when it was not possible to engage the service of an appropriate translation

  • How: Staff reporting, complaints, PALS and Your Opinion Counts.
  • Who by: Complaints manager.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: 6 Monthly.

7.7 Any dissatisfaction or satisfaction with the service offered by the translation

  • How: Concerns raised through PALS, complaints or Your Opinion Counts by patients or carers. Concerns raised to or from staff.
  • Who by: Complaints manager.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: 6 Monthly.

7.8 Any occasions where the response times exceed the identified target KPI

  • How: Staff reporting complaints, PALS, Your Opinion Counts, Concerns raised to or from staff.
  • Who by: Complaints manager.
  • Reported to: Clinical quality group and EDI and P workstream.
  • Frequency: 6 Monthly.

8 Equality impact assessment screening

To access the equality impact assessment for this policy, please email rdash.equalityanddiversity@nhs.net to request the document.

8.1 Privacy, dignity and respect

The NHS Constitution states that all patients should feel that their privacy and dignity are respected while they are in hospital. High Quality Care for All (2008), Lord Darzi’s review of the NHS, identifies the need to organise care around the individual, ‘not just clinically but in terms of dignity and respect’.

Consequently, the trust is required to articulate its intent to deliver care with privacy and dignity that treats all service users with respect. Therefore, all procedural documents will be considered, if relevant, to reflect the requirement to treat everyone with privacy, dignity, and respect, (when appropriate this should also include how same sex accommodation is provided).

8.1.1 How this will be met

No issues have been identified in relation to this policy.

Privacy, dignity and respect underpin the implementation of this and the associated policies, which set out a person-centred approach to care, working in partnership with the patient and cares as appropriate.

8.2 Mental Capacity Act

Central to any aspect of care delivered to adults and young people aged 16 years or over will be the consideration of the individual’s capacity to participate in the decision-making process. Consequently, no intervention should be carried out without either the individual’s informed consent, or the powers included in a legal framework, or by order of the court.

Therefore, the trust is required to make sure that all staff working with individuals who use our service are familiar with the provisions within the Mental Capacity Act (2005). For this reason all procedural documents will be considered, if relevant to reflect the provisions of the Mental Capacity Act (2005)to ensure that the rights of individual are protected and they are supported to make their own decisions where possible and that any decisions made on their behalf when they lack capacity are made in their best interests and least restrictive of their rights and freedoms.

8.2.1 How this will be met

All individuals involved in the implementation of this policy should do so in accordance with the guiding principles of the Mental Capacity Act (2005) (Section 1).

9 Links to any other associated documents

10 References

11 Appendices

11.1 Appendix A “Get it write” process

11.2 Appendix B Ladder of engagement

There are many different way sin which people might participate in health depending upon their personal circumstances and interest. The ‘ladder of engagement and participation’ is a widely recognised model for understanding different forms and degrees of patient and public involvement, (based on the work of Sherry Arnstein). Patient and public voice activity on every step of the ladder is valuable, although participation becomes more meaningful at the top of the ladder ( in the order from top to bottom, devolving, collaborating, involving, consulting and informing).

11.2.1 Devolving

Placing decision-making in the hands of the community and individuals. For example, personal health budgets or a community development approach.

11.2.2 Collaborating

Working in partnership with communities and patients in each aspect of the decision, including the development of alternatives and the identification of the preferred solution.

11.2.3 Involving

Working directly with communities and patients to ensure that concerns and aspirations are consistently understood and considered. For example, partnership boards, reference groups and service users participating in policy groups.

11.2.4 Consulting

Obtaining community and individual feedback on analysis, alternatives and, or decisions. For example, surveys, door knocking, citizens’ panels and focus groups.

11.2.5 Informing

Providing communities and individuals with balanced and object information to assist them in understanding problems, alternatives, opportunities, solutions. For example, websites, newsletters and press releases.

Document control

  • Version: 7.2.
  • Unique reference number: 317.
  • Approved by: Corporate policy approval group.
  • Date approved: 25 January 2024.
  • Name of originator or author: Equality, diversity and inclusion project support officer.
  • Name of responsible individual: Head of EDI and P.
  • Date issued: 30 January 2024.
  • Review date: December 2024.
  • Target audience: All staff.

Page last reviewed: November 14, 2024
Next review due: November 14, 2025

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