Data Set PRSB Record structure and content 2.16.840.1.113883.3.1937.777.28.1.1

• prsb03-issue-38: Gender ()

or

Sent as per the ECDS Person Stated Gender code set:

1 Male

2 Female

9 Indeterminate

X Unknown

• prsb03-issue-39: Sex ()

* Personal contacts e.g., next of kin, in case of emergency contact, lasting power of attorney, dependents, informal carers etc.

* Health/care professional contacts e.g., social worker, hospital clinician, care coordinator, key worker, Independent Mental Capacity Advocate (IMCA) etc.

Name, relationship, role (if formal role), contact details and availability, e.g. out of hours.

A description of how you communicate normally including any communication aids you use, for example a hearing aid.

• Include your preferred language of communication, if your first language is not English.
• Include how you would communicate when you are in pain or distress.
• Include how you communicate choices.
• Include how you give feedback or raise a concern.
• Include how you like to receive information

Describe how you would like others to engage and communicate with you, including how you would like to be addressed.

A description covering what you are able to do, how you engage with others and how you feel on a typical day through to on a day when you are unwell or really unwell.

• Include any causes that might result in you becoming unwell and strategies for avoiding or addressing the causes. For example, not drinking enough water could cause constipation.
• Include any signs that indicate you might be becoming unwell.
• On a bad day describe what is different about what you are able to do, how you engage with others and how you feel.
• Include how your everyday life is affected by any medical conditions e.g. dementia and any symptoms e.g. itchiness, cough, pain and how you manage those conditions.
• Include past health issues or experiences that need to be considered
• Include your wellbeing and lifestyle goals and aspirations

A description of things you want someone supporting you to do or not to do.

For example, this might include: - Talk to me not to my carer, remind me to take my medication, encourage me to wash my hands regularly, explain to me what is happening and why, respond to my communication.

A description of things you do not want someone supporting for you to do. For example, this might include: - Discussing or asking questions about certain topics, making assumptions about something, providing support when it is not wanted, talking to you in a certain way.

A description of how and when you want someone caring for you to support you.

This could include support needs in an emergency situation (for example taking blood)

This could include support you need to maintain important routines or to carry out particular activities, for example: - Personal care routines, Eating and drinking, Bedtime routines, Taking medications, Moving and transitioning

This could also include support needed with:- wearing glasses/hearing aids/false teeth etc, making informed choices or understanding dangers and risks, managing your emotions, moods and behaviours, memory or confusion.

Include how your support needs change in different environments. Include any triggers that might result in you needing further support and strategies for avoiding or addressing the triggers. Include how you want the support to be provided.

A description of what is also worth knowing about you for people caring or supporting you.

This could include a short history of your life (where you have worked, where you lived, important events in your life, important people in your past life).

This could include a short profile of your current life:- your work / study, your aspirations, your skills, your networks, things you like e.g. particular foods, places, a football team and things you like to talk about, things you dislike

This could also include any care and support preferences that have not been included elsewhere.