It takes a few examples to illustrate the often forgotten or unimagined role of caregivers.
1. A six year old child with type one diabetes. The caregivers read the prescription of units of insulin, draw up the units of insulin, give the insulin injections. They also assess the child's thirst, drinking, weight, urine and blood sugars. They are aware of hypoglycaemic (low blood sugar) symptoms and make permanent assess to and know how to administer carbohydrates.
2. A family with a family member who experiences epileptic fits. The family need to know how to position the family member during a fit, when to call for help during a prolonged fit. To understand the postictal phase (confusion and altered behaviour and cognition after a seizure).
3. A family with a family member with autism needs to understand the family member's lack of empathy or super concentration on detail and apparent disregard of relationships.
4. A caregiver visiting a patient patient with heart and lung disease who uses an oxygen cylinder, inhalers and nebulizer (creates an atomized solution of drugs to enter the lungs) has ankle swelling, cyanosis and breathlessness needs to have some idea of the reasons for the oxygen and nebulizer and drugs.
With culture change (from paternalistic "doctor knows best" (but is often not available) to coproduction) and the technological digital availability of General health, nursing, prescribing, care pathways, caregivers become able to add capacity to health and social care.
Professionals may delegate tasks and not abdicate responsibility for the maintenance of the care pathways. The shared record is absolutely essential and now a legal requirement in the USA amongst professional service providers and with patients.
Patients themselves who have "mental capacity" may share their notes with whoever they wish. For sensitive or shaming information (in the patients' eyes) the family doctor in the UK can now make that information locked so that no one else can see the "shaming" information.
Interestingly, health literacy studies show that patients are also ashamed of illiteracy and low literacy skills and attempt to hide the low literacy.
Evidence also suggests that doctors are poor at determining literacy levels.
HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data
Email address: richardpeterfitton7 AT gmail.com