NHS England » Health and care passports: implementation guidance

Introduction

What is a health and care passport

It’s good practice for people with a learning disability and autistic people to have a health and care passport which can be regularly updated in response to changes in their health and wellbeing and interaction in the health and care services they use. How, when and who to involve in completing and updating a passport should be guided by the person who owns the passport – local systems should consider what opportunities there may be to prompt a conversation about the health and care passport, for example, during the learning disability annual health check.

It is good practice to have a document as:

a resource for clinical and administrative health and care staff that contains information about the patient to support them to deliver personalised care.
a health and care passport that is owned by the individual. Each person decides what they want to include, who they want to support them to complete it and who it should be shared with.
a resource to support a patient with a learning disability and autistic patients to think about what they want health and care staff to know about them to provide effective care and support and inform care planning.
a tool to support and enable health and care staff to meet key legal duties including the Equality Act 2010, Reasonable Adjustments and the Mental Capacity Act 2005.
a signpost to more detailed information including key care plans such as, eating and drinking, communication and advanced care plans.

What a health and care passport is not

it is not a replacement for clinical records.
it is not for the recording of clinical advice or decisions.
it is not a substitute for recording information on the Reasonable Adjustment Digital flag.
it does not replace the need to talk with the patient and their family or key individuals about their care and support.
it is not a care plan nor should it contain care planning information.

Aim of this guidance

The purpose of this guidance and the accompanying template is to support integrated care systems (ICS) to review existing arrangements for health and care passports (or hospital passports) to address recommendations by the Health Services Safety Investigations Body (HSSIB), and to improve health outcomes for people with a learning disability and autistic people to:

reduce variation of the content and structure of health and care passports across England
improve confidence in health and care passports by clinicians and other health and care professionals
improve the use of health and care passports by people with a learning disability and autistic people
improve the “portability” of health and care passports within, and across, systems so that if an individual needs to access health and care services from different providers or outside of their “home” area the document is recognised and utilised

Audience for this guidance

The guidance is aimed at Integrated Care Boards (ICB) as the governance and oversight bodies providing strategic leadership who are working closely with ICS’s and partners, including the voluntary and independent sector to implement health and care passports locally.

There is significant variation across the country in the use of health and care passports. Some ICS’s have invested significant resources – working in close collaboration with people with lived experience to produce a health and care passport and embed its use across the ICS. There are some ICS’s who may be at the start of their journey to develop or refresh such documentation. This guidance is intended for all systems irrespective of where they are on their journey.

Benefits of a health and care passport

empower patients and carers – enabling better informed clinical decisions and shared decision making
improve patient safety
provide consistent, clear, patient centred information
reduce health inequalities
can support organisations and professionals to meet their legal duties including:
- Mental Capacity Act –
  - particularly supporting best interest decision making and the requirement to include the individual in a decision that affects them if they have been assessed as not having capacity. The content of the passport should give clinicians insight into how to involve someone in a decision that affects them
- Equality duty: reasonable adjustments
  - Providing details which complement information held on the Reasonable Adjustment Digital Flag held on the NHS Spine and provide detail of details related to other protected characteristics including race, culture and ethnicity

Who could benefit from having a health and care passport

Anyone could benefit from having a health and care passport. This guidance is focused on people with a learning disability and autistic people as two groups in particular who could benefit. The content of the passport will be different from person to person – reflecting the needs of the individual.

A passport for a person who has a mild learning disability, who communicates verbally, lives independently and does not have any long term conditions is likely to look very different to someone who has a profound learning disability, uses communication aids, needs support with all aspects of daily and has a number of long term conditions.

If there is more information held elsewhere, such as in a communication passport, or an eating and drinking plan then the health and care passport can contain this and inform the reader where, and how, to access additional information.

“it’s a good way to prompt people to think about what needs to be done if someone does needs help” (Family carer adviser, NHS England)

Guiding principles for a health and care passport for people with a learning disability and autistic people

The content is owned by the person

The structure of the passport should remain consistent to enable health and care professionals to quickly review and apply its content to the situation. The detail within each section is owned by the patient determined by their own needs and circumstances. It is not for health and care staff to determine what is and is not included in the passport within each section.

Structure and format should support planned and unplanned (emergency) contact with health and care services

People with a learning disability, on average, have more than one chronic condition. This means a person’s 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 health and care services including planned care and emergency unplanned admissions.

People with lived experience often talk about their passports “getting lost” when they give them to a member of staff. Each passport may contain sensitive information about the person. A passport could include details of third parties – details of carers, health and welfare deputies etc. Processes for access to and storage of the passport by health and care services should be carefully considered. Where printed copies are provided by the patient, these should be respected in the same way printed patient records are.

Health and care staff should be aware of the value of health and care passports, take note of and incorporate the content of the passport into the care and support provided to the individual.

People with a learning disability often talk about trying to show health and care staff their passport but find 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.

The passport must be portable to enable its use in a range of settings and locations

The passport needs to be portable, accessible, and meaningful for patients and for providers for it to be an effective document. That means that within an ICS footprint all providers should accept each other’s passports as a minimum and ideally all trusts should accept each other’s passport when presented by the patient. In turn this will:

support staff to use the document effectively by building familiarity and recognition of its importance and how it can support them to provide the best possible care
decrease confusion for patients, family, and carers about what passport to use, so they do not have multiple passports for different settings
ensure relevant information is shared between providers, which they may not have had access to previously

Having the “wrong” version of a health and care passport such as a version that is not familiar to the health and care service the person is attending should never be a reason to disregard the information in the passport.

The passport can be in a physical or digital form or a combination of formats.

The NHS is working towards a vision for a digitally enabled health and social care system to enable information to flow safely and seamlessly between IT systems, care providers and settings.

Approximately one third of people with a disability do not have basic digital skills whilst there is evidence to suggest this is improving there is still a significant gap (28%) which increases if people have multiple impairments (Lloyds Bank, 2021).

Embedding the health and care passport should take into account the needs of the local population of people with a learning disability, local digital strategies and reasonable adjustments to ensure any “digital by design” strategies do not exclude people who live in digital poverty (Digital Poverty Alliance).

This may include working with partners to make paper and downloadable versions of the passport available as well as digital solutions as well as a way to convert paper based to digital to support their use by local systems.

Supporting a process for people to review their health and care passports.

There should be a process in place for clinicians and support staff to discuss the content and possible changes based on the latest clinical episode with the individual to ensure the content is as up to date and as relevant as possible.

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

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

The Reasonable Adjustment Digital Flag provides:

basic context about a patient
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 individual has a health and care passport and how to access it (Reasonable Adjustment Flag case study).

Appendices

Examples of health and care passports supporting care

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.

Resources

Publishing reference: PRN00983_i

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