Do you or a love one use a patient passport? A recent study “Patient passports for rare diseases: results of a pilot study” has demonstrated a positive impact for individuals who utilise this tool:
“Over half (53.8%) felt the passport helped access needed care, 67.9% found it more useful than existing tools, and 75.9% were highly likely to recommend it to peers. All 31 HCP respondents listed perceived benefits, including improved HCP-patient/caregiver communication; some noted a preference for formal endorsement.”
To read about the study: Patient passports for rare diseases: results of a pilot study
Two types of patient passport available for our community members:
CamRARE Patient Passport
We are one of the many patient groups partnering with CamRARE bring their ‘This Is Me’ Rare Patient Passport to our community. The patient passport provides a tool to communicated your/your loved one’s rare condition to new people. Please make sure to select ‘Alex TLC’ when asked if you’d like a branded passport from a specific patient group.
To sign up for yours, please complete the online form: Rare Patient Passport form
IWMD Patient Passport
Initially piloted in Leeds by Dr Lydia Green and nurse specialist Hannah Geldert, the IWMD patient passport is now being rolled out to the whole of the IWMD North service. The aim is to bridge the communication gap between specialist services and local teams. The patient passport is designed with patients at the centre the passport. The passports are completed following a clinic appointment and then updated following future clinic appointments. They are currently only for paediatric patients. All patients under the IWMD North service, Leeds/Manchester, children’s service will be offered a patient passport. To find out more, please speak to a member of your child’s IWMD team.
