Giving healthcare professionals access to a better clinical assessment.
Hospital passports have been around for a while, but you may not know much about them. Healthcare professionals (HCPs) and patients are not well aware of these conditions. These books are sometimes called All About Me books, Traffic Light books, Grab and Go forms, or Health Passports. They are documents, held by the patient or their family, containing information about the patient which might make a huge difference to your ability to care for them.
The information that many focus on is medical and surgical history, medications, allergies, contacts and interventions “Red Hot Information”. Nevertheless, hospital passports contain so much more information that is equally valuable to us when trying to care for patients.
Past medical history, medications and allergies are all examples of information that, generally, are easy to come by. Therefore, what information can add real value to both patients and healthcare professionals?Patients with a learning disability often use hospital passports. Learning disability may co-exist with other conditions that can also make accessing health care difficult, such as language disorders, social communication difficulties, sensory processing difficulties or autistic spectrum conditions. The things that HCPs often don’t ask about, and patients and families often forget to offer, can really make a difference to clinical assessments and disease management.
When taking a history, likes and dislikes may seem irrelevant, but knowing what makes a patient feel more comfortable and less distressed, or what upsets them, can greatly enhance the amount of information you can gather. Knowing how someone communicates, including whether they use Makaton or symbols, or if they need you to speak clearly and slowly, can make all the difference between a successful outcome and frustration.. They may describe sensory processing difficulties – your patient might struggle with beeps and alarms, for example, or become distressed when having their oxygen saturations measured. Considering these things can allow you to plan your management or alter your environment. Pain can be very difficult to recognise, particularly if your patient is unable to verbalise. A hospital passport which lists the signs that a particular person may display when they are in pain can be invaluable.
Many of these programs are targeted towards people with intellectual disabilities or cognitive impairments, but it is vital that we also think about people who may have multiple serious chronic illnesses.
- Communication: “How can I tell you what I think you need to know, what I like to be called”
- Preferences: “What I like, what I don’t like when I’m sick/not sick, my favourite toy”
- Goals: “When I’m grown up, when I’m not sick I want to….”
- Interests: “Who am I outside of hospital? What do I like to watch/do/see/play”
- My family and friends and pets
- How to help me make feel safe: “what scares me?”
All of these points are more than relevant to every child, not just those with a learning disability. For example – a child with Cystic Fibrosis who has MDT input and may present with haemoptysis to ED (not a known team) – What do we need to know? Often these kids may be able to tell you, but when you are an unfamiliar face and they possibly have experienced ‘bad’ care, how can you convince them that you won’t be ‘bad’ either?
Sometimes just being able to say, “I have read your health passport, I see…” and working around the individuality of the patient can make a huge difference. While your ED may have a pathway for haemoptysis, it’s paramount to acknowledge what the child in front of you needs AND wants. Even though they might be able to freely communicate, they may not do so, especially if they don’t know you, trust has not been formed, and the situation is scary to them (no matter how many times it has happened).
Likewise, there are also other types of hospital passports that are more clinically focused; they are more like treatment summaries than traditional passports. Children and young people who have a complex medical history may find these especially helpful when seeing a doctor. In some places, this is known as a Survivorship Passport. There may be information about their treatments, such as chemotherapy or radiotherapy, and when devices such as CVADs were inserted. For those in the community who may have patients with ongoing health needs, this can be especially useful. It is particularly useful if the conditions need ongoing monitoring or scanning. It is not necessary for us to be experts in all fields of medicine, but it is helpful to know where to find information. Additionally, a hospital passport can facilitate the transition from child to adult health services, empowering young adults to take responsibility for their health.
There are many, many examples of hospital passports out there. Almost every UK NHS Trust has its own version (such as this, from University Hospitals Bristol, or this shortened COVID-19 version), as do many charities and support groups (such as Mencap and the National Autistic Society). Many follow a traffic light layout (hence the alternative name) . Essential information is in the red section, important information in the amber or orange section and useful information is in the green section.
The amount of information contained is less important than the type of information. The layout and design are probably less relevant than whether it is completed and kept up to date. Developing digital versions in an accessible format may help make them a valuable resource. To make a hospital passport useful, it must be known about, remembered, filled in, kept safe, and updated regularly. It must be user-friendly for patients, their families, and healthcare providers. Those nuggets of information that practitioners don’t often ask about have a lot of value, especially for healthcare practitioners.
We often talk about family-centred care and patient participation, but how often do we step outside the clinical picture and take a closer look? In many cases, we focus on doing a task without considering previous experiences and needs. This tool is an excellent resource for building trusting relationships necessary for those tasks! Why confine it to people with impaired communication?