This is an article I wrote some time ago. I hope it will be useful to Patient Leaders and others seeking to influence change. It stems from being fed up of repeatedly being asked in tedious committees as a representative, 'so, what do patients think?'. Well, this perhaps...
Ask any user of services what matters to them and they will have an opinion. Most people involved in trying to improve things for patients are motivated by experience; some grateful who want to give something back, others damaged who want change. Without this passion and commitment the decision-making tables would be sterile.
The downside to this is not that people ‘have an axe to grind’ but that their sight is partial. If my problem as a patient was not getting access to services, then it would be hard for me to fully understand that this is not the only thing that matters to others. If I have had poor treatment, how might I be able to tell whether dissatisfaction is actually the norm? If I generalise from my own experience without being able to check things out with others, or with other information, those round the table can write me off as 'having a personal agenda'.
But you don’t have to know everything! If you know what the research evidence says matters on the whole to all patients, then this will help you at the decision making table.
The things that matter to patients and carers are:
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.
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)
Of course, you may want to regroup the above or differentiate them in slightly different ways. And the above list does not include everything. But they are important for all of us, regardless of circumstance or health problem.
On top of these, there are particular needs for specific groups or particular barriers that people from different parts of society face when trying to get the things they need. Therefore, diversity, equality and human rights issues are central to all 12 dimensions. It should also be noted that financing issues are important to patients and carers. But, these are more things that should concern us as citizens and tax payers (i.e. how our money is allocated across the system).The issue of rationing of treatments affects us as both patients and citizens. But ultimately, they should be decided fairly based on clear discussions with people as citizens.
How can the Patient's Dozen help?
If you have these dimensions in your head, then it can release you to focus on being more influential and effective in several ways:
A. You can be 'good enough' and not have to know everything
If you know the 12 dimensions, you can walk into any project group or committee and be able to answer the question about 'what matters to patients?'. You can then turn that question on its head and ask others what they and the group are doing to find out more about each of these dimensions, given the remit of the group. If it is about diabetes, ask how the project will tackle those 12 dimensions in diabetes care. The dimensions provide an anchor or foothold for your role. You could even feel confident being a user of mental health services as part of a project group for arthritis! That does not mean you should be there instead of arthritis patients, but that both your roles might be valuable.
B. You can be an 'advisor' rather than a representative
Armed with the dimensions, let yourself off the hook of having to articulate the views of everyone in your client group or community! Adopt the approach of being a patient and public 'advisor' rather than a representative, able to act as critical friend rather than the one who has to run around to find out the views of everyone. After all it is not your statutory duty to get everyone's views. That's the role of the organisation you are working with or the committee you are on.
It is poor engagement practice to rely on one person to be the sole conduit for views. It does not mean you are unable to articulate the information or views you have - only that you don't have to be perfect and all-seeing (flattering though that position may be in your own eyes). You can always use your own stories or perspectives, but be careful to use them to augment a discussion, illustrate a wider or deeper point. Find ways of relating them to the broader dimensions.
C. You can ask powerful questions rather than have to come up with the answers
If you don't have to know all the answers, you are more free to ask questions and work with others to build trusting relationships and dialogue. You might want to ask of the project, group or committee 'what will we do together to improve things?' (i.e. in one, or all of the dimensions).
Through this approach you can continually keep things focused. Through powerful questions, based on a broad understanding of what matters, you can keep things grounded in conversations about the people that really matter. You can ask: 'What do our discussions mean in terms of improving things for patients?' (i.e. across the 12 dimensions, or in one particular aspect).
D. You can be strategic and solution-focused rather than risk being seen as a 'trouble-maker'
Any project group you are on could use the patient experience dimensions as a diagnostic tool. You can find out what information you have about each of the dimensions at the planning stage and use it to monitor progress. This might be data that comes from routine performance figures (like waiting times, outcomes data, etc) or that comes from patients (quantitative or qualitative) or from staff. This can be used to build a picture of what you know and what you don't.
This can then help to focus the project on where more information is needed, or where the focus should be on solutions. After all, if you already know the quality of food in a ward is poor, why repeat a survey about it? Help do something about it! In this way, the dimensions can be used to prioritise action, aid dialogue and trigger collective action.