The “This is Me” Rare Patient Passport (opens in new tab) created by CamRARE, in collaboration with families from across the East of England, and medical professionals, is designed to address the unique needs of individuals with rare conditions. This passport aims to provide comprehensive but succint personalised information about a patient in a way that standard health passports do not.
Anyone with a rare or undiagnosed condition of any age, anywhere in the world, is welcome to use the "This is me" Rare Patient Passport template to create their own personalised healthcare communication tool.
An accessible, editable PDF with guidance notes. Easy to update, printable flat, or to fold and use with a wallet and lanyard.
Care and respond (opens in new tab) is a new app centered on building strong informed networks around an individual. Users can share their health profile - called a passport - with others, including the emergency services and are able to set up a local support group who can help them in an emergency. The passport can be securely shared with health services by the user, raising awareness of medical conditions, that may be rare or complex and often time-critical, to support clinical decision making.
The app has been developed in Wales by Science and Engineering Applications Ltd in collaboration with various patient groups and the NHS, with grant funding from the Welsh Government.
The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (or E.S.PKU) Metabolic Travel Passport (opens in new tab) is a travel document intended as an auxiliary tool to enable Border Force Officers to quickly find the necessary information to assess the medication and food carried, whilst traveling abroad.
The Welsh Ambulance Service has made a Medical Information Card (opens in new tab) that will help to give important information to paramedics and other emergency service staff if there is an accident or emergency.
You will need to fill in as many details as you can on the card and keep it with you at all times. If you fill in the Welsh side of the card please fill in the English side too as the paramedic who helps you may not be able to read Welsh.
To request a medical information card please e-mail peci.team@wales.nhs.uk; make sure you give your name, address and postcode.
The Once for Wales Health Profile (opens in new tab) provides a personalised document to people with a learning disability that details their individual health profile. This key information can then be used by healthcare providers to provide safe, person-centred healthcare.
Having one tool that will be used throughout Wales aims to ensure that the tool is clearly recognised by all healthcare professionals. Guidance has been developed to accompany this for people with a learning disability, their families and carers, and for health professionals to assist with the completion of the tool and understanding how it should be used.