What Matters to Patients and Care Givers? UK Model of Patient Leaders

In the UK there is an organization "The Center for Patient Leadership" and they are committed to training patient leaders and they have 12 criteria that they measure against.

One I would add is "equal access to information". Patients and their family members are an intregral part of their own care teams and in order to be an informed partner in their care they need the same access to information (in real time) that anyone else on the care team (such as the ward clerk or MA) has.

1. Getting better, feeling better (outcomes of care)

2. Getting the right care from the right people (clinical quality). This might include safety of
treatment interventions (NB. 'Safety' can include safety of treatment and safety of
environment, see no.7 below)

3. Being treated as a human being (humanity of care). Including respect and dignity

4. Information, communication, having a say (shared decision making). Including receiving
information, clear explanations and being part of shared decision making

5. Being supported. Including practical and emotional support including access to statutory and
voluntary sector services

6. Support for carers, relatives and loved ones

7. A safe, clean, comfortable place to be (environment of care). Including privacy, hygiene, and
food.

The above should be there at each stage of our care (whether in primary or community care
or in a hospital). The following things concern what those stages might be.

8. Right treatment at the right time (one aspect of access) – including prompt response to an
emergency; timely access to car, short waits, etc.

9. Right treatment in the right place (another aspect of access) – convenient locations;
transport; parking, etc.
2
10. Not being passed from pillar to post (continuity) – a smooth ‘journey’ through primary to/from
secondary care, between health and social care, between community providers, etc.

11. Continuous care – ‘after care’, support in the community, etc.

12. Support for independence. Including being able to look after yourself to improve your own
well-being and prevention of ill-health. (NB. 11 and 12 are very closely linked, almost
overlapping in some circumstances)