4.1.15 Health and Care Passports

 1. Introduction

A health and care passport is a document which gives health and social care staff information about an adult who has communication needs so they can provide them with good care and treatment. Wherever possible, the adult should be involved in developing the document.

It can be shown to anyone in health and social care such as doctors, care workers, receptionists, nurses, dentists or ambulance staff. It can be used at planned appointments and when receiving care, but also in emergency situations.

As well as being used by adults with a learning disability or autism, health and social care passports can also be used by anyone who has difficulty in communicating information about themselves that they want health and social care staff to know.

The information in this chapter is taken from Health and Care Passports: Implementation Guidance (NHS England).

The Health and Care Passport – plain English (NHS England) suggests a structure of what can be included in a passport.

2. What is in the Health and Care Passport?

The passport:

• is owned by the adult. They decide what they want to include in it, who they want to support them to complete it and who it should be shared with;
• provides information for staff who are working with the adult which they can use in the planning, delivery and review of  care and support services;
• is a tool to support and enable health and social care staff to meet key legal duties, including the Equality Act 2010 (see Equality, Diversity and Human Rights chapter), providing reasonable adjustments and ensuring the principles in the Mental Capacity Act 2005 are followed (see Mental Capacity chapter);
• can signpost to more detailed information about the adult and their needs and preferences, including their key care and support plans such as, eating and drinking, communication and advance care plans.

2.1 What a health and care passport is not

A health and care passport is not:

• a replacement for clinical records;
• to record clinical advice or decisions in;
• a substitute for recording information on the Reasonable Adjustment Digital flag;
• a replacement for needing to talk with the adult and their family or other key people, about their care and support;
• a care plan or local authority care and support plan and it should not contain care planning / care and support planning information.

3. Benefits of a Health and Care Passport

The benefits of a health and care passport include:

• empowering adults and carers – this supports shared decision making with health and care staff and helps to ensure that clinical decisions that are better informed;
• improved patient safety;
• providing consistent, clear, adult-centred information;
• can support organisations and practitioners to meet their legal duties, including:
  • Mental Capacity Act – it is particularly useful in best interests decision making and the requirement to include the adult in a decision that affects them, when they have been assessed as not having mental capacity. The passport content should give staff insight into how to involve the adult in decisions that affects them;
  • equality duty: reasonable adjustments – it provides details which complement information held on the Reasonable Adjustment Digital Flag held on the NHS Spine. It also provides details related to other protected characteristics including race, culture and ethnicity.

4. What is in a Health and Care Passport?

The Health and Care Passport – plain English (NHS England) suggests a structure of what can be included in a passport.

It includes:

• the name the adult likes to be called;
• their full name;
• what they want people to refer to them as: for example he / she / they;
• date of birth;
• NHS number;
• what is important for them and their health – how to keep them safe;
• important people in their lives;
• their communication;
• their health and wellbeing;
• please do and please don’t;
• how and when to support them.

5. Guiding Principles for Health and Care Passports

5.1 The passport content is owned by the adult

The detail within each section is owned by the adult and will be different depending on their particular needs and circumstances. It is not for health and care staff to decide what is and is not included in each section of the passport.

5.2 Structure and format

The structure of the passport should remain consistent to better enable practitioners to quickly review the information and apply its content to the particular situation in which they are working with the adult (for example, an emergency admission to hospital).

Adults with learning disabilities often have more than one chronic condition. This means their health and care passport needs to be written and structured in such a way so it can be used flexibly and be widely recognised across a range of health and care services.

5.3 Information governance

Information governance in relation to the storage and sharing of individual health and care passports must be in line with the principles of confidentiality. Adults with lived experience have reported their passports being lost when they give them to a member of staff.

Passports may contain sensitive information about the adult and contain details of other people, including for example, carers, health and welfare deputies. Processes for accessing and storing the passport by health and care services should be carefully considered.

Where printed copies are provided by the adult, these should be respected in the same way printed patient records are.

5.4 The value of health and care passports

Health and care staff should be aware of the value of health and care passports. They should take note of and use the content of the passport in the care and support they provide to the adult. Adults with a learning disability often report that they try and show their passport to practitioners, but that it is ignored.

“One of the lead doctors picked up my hospital passport and said ‘why do I need to read this’ and then he quickly put it back where he had found it” Aaron Senior: Lived experience autism advisor NHS England learning disability and autism programme.

5.5 The passport is portable to allow use in a range of settings

In order to be an effective document, the passport needs to be portable, accessible, and meaningful for adults and practitioners. Within the local Integrated Care System boundary, therefore, all providers should accept each other’s passports as a minimum and ideally all NHS trusts should accept each other’s passports when given to them by the adult. In turn this will:

• support staff to use the document effectively by becoming familiar and recognising its importance, and how it can support them to provide the adult with the best possible care;
• lessen confusion for adults, family, and carers about which passport to use, so they do not have different passports for different settings;
• make sure relevant information is shared between providers, to which they otherwise may not have had access.

Having the ‘wrong’ version of a health and care passport, that is not familiar to the health and care service the adult is attending for example, should not be a reason to disregard the information in the passport.

5.6 Passport formats

The passport can be in a physical or digital form or a combination of both, depending on the local area, as each may be working with partners to make paper and downloadable versions of the passport available as well as digital solutions.

5.7 Passport review process

There should be a process for clinicians and other practitioners to discuss the content of the passport with the adult and their carers, and any possible changes they think may be necessary based on the latest clinical episode to ensure the content is up to date.

It should be the choice of the adult to decide when to update their passport. Review prompts could be built into systems such as at the Annual Health Check or working with local voluntary and independent sector partners.

5.8 The reasonable adjustments digital flag

Health and care passports build on information held in the reasonable adjustments digital flag, giving additional detail to support adults who use the passport.

The Reasonable Adjustment Digital Flag provides:

• basic context about an adult;
• key adjustments and the details related to this;
• further information to aid health and care workers.

The health and care passport compliments the reasonable adjustment digital flag and can be used to indicate if an adult has a health and care passport and how to access it (see the Reasonable Adjustment Flag case study).

6. Further Reading

6.1 Relevant chapters

Equality, Diversity and Human Rights

Interpreting, Signing and Communication Needs

6.2 Supporting information

Annual Health Check Resources and Guide (National Development Team for Inclusion) supports the implementation of health checks for people with a learning disability

Health and Care Passports: Implementation Guidance (NHS England)

Health and Care Passport – plain English (NHS England) 

Health and Care Passport: Easy Read (NHS England) 

Reasonable Adjustment Digital Flag (NHS England) 

Appendix 1: Case Examples

These case examples have been taken from the Health and Care Passports: Implementation Guidance Appendices (NHS England)

Patrick

Patrick is supported by a local care agency who are contracted by the Local Authority. The care agency, working with Patrick and his family have spent time together completing Patrick’s health and care passport.

Patrick becomes very unwell at home and is found by his carer who comes by every evening to help with making dinner. Patrick’s carer calls an ambulance as he is very worried and calls Patrick’s mum after he asks him to. Patrick’s mum is away for the weekend, and his carer is worried as he is new and doesn’t know Patrick very well. The carer is able to use information in the passport when they ring 999. When the ambulance crew attend, the carer shows the Paramedic the health and care passport. It says that Patrick can get anxious around people in uniform. They use information about what Patrick likes to talk about – football, to try and put him at ease.

Mohammed

Mohammed is being admitted to hospital for a planned hip operation. As part of his preassessment, Mohammed and his Dad met with the Acute Learning Disability Nurse and updated his health and care passport. He was supported by his Dad to let them know about his new moving and handling requirements since his last admission. Mohammed’s health and care passport says that Mohammed needs careful moving and handling and to ask his family for photos and access to a video that shows how to do it correctly to minimise pain. Mohammed also recently lost his mother, who was previously listed as a contact and Health Deputy on his passport. His hospital passport is shared with the occupational therapists, physiotherapists and the ward which helps them make sure they have proper slings, and the therapy teams can adapt their support to meet Mohammed’s rehabilitation needs.

Pauline

Pauline has received an invitation to her first mammogram as she is now eligible for breast cancer screening. Pauline doesn’t fully understand what the letter is for and so asks a friend who works with her. Pauline’s friend helps her speak to the GP and they refer Pauline to the community learning disability nurses to get some support in preparing for the appointment. Her community learning disability nurse works with Pauline to create a health and care passport and saves it to her record, while also writing to the radiology department to advise them to review it as well as the Reasonable Adjustment Digital Flag on Pauline’s patient record before the appointment. Pauline’s friend is able to go with her to the appointment. The radiographer uses some of the information in the passport about what Pauline likes. This helped put Pauline at ease. The radiographer was able to build a relationship with Pauline in a short time, explain the procedure and reassure and prepare Pauline that it might be uncomfortable.