What do chronic patients want?

Fragmentation of services is a disgrace for complex chronic patients, for people with combined health and social needs, for fragile people and, in short, for the elderly population. Hence, most governments are engaged in service integration initiatives, but progress is slow and the results are disappointing because systems are too fragmented: in budgets, in access rights, in circuits, in professional cultures, in institutions, in public and private providers, etc. However, the British have proposed a merger of services by 2020, and since they recognize that, as things stand, offering people-centred care will be a bulky process, in the summer of 2013 they launched a project, “People helping people", a project that is ambitious in vision but modest in methodology and budget.

What is "People helping people"?

The program is working on 25 pilot areas that volunteered to test (as previously done in Torbay) different ways of coordinating and integrating services in order to promote patient-centred care, for which they rely on a single operative objective of elaborating, on the part of all the actors, of individualized plans that adapt to each person’s particular needs and way of life. In terms of methodology, the project has adopted the "triple aim" (Institute for Healthcare Improvement), which develops the following principles: a) improve patient experience, b) improve the health and well-being of the population, and c) reduce the waste and, therefore, the cost per capita.

What do patients want?

Taken from the document evaluating the second year of the pilot project (2015) I would like to highlight the process they have followed to listen to patients in an initiative they call "I statements", which is helping to reduce circuit confusion, reduce duplication and errors and prevent people from getting lost in the system. Let's look at a summary of the patients' statements:

1. I have a single professional team that takes care of me and everyone knows my story; one member of the team is my referent.
2. I have participated in the elaboration of my own service plan and I have done it to the degree of participation that I thought appropriate.
3. My family members have been involved in developing my service plan as much as I wanted.
4. I trust my team because together we fulfil the service plan.
5. When I feel ill I know who to contact to avoid having to go to the emergency room.
6. If I have to be hospitalized, my team makes the appropriate arrangements so that the professionals of the centre know me and are aware of the agreed plan.
7. I always have the telephone line or email open in case I have questions or want to discuss certain options with the team professionals.
8. I am always informed of the things I have to do or the places I have to go.
9. I have talked to my team about what we will do if things go wrong.
10. I periodically receive a comprehensive review of the medicines I take.
11. I have access to my medical and social history whenever I ask.
12. My family and caregivers receive support from professionals.
13. I know the money available for my service plan and I have the option to decide the how they will be used.
14. If I have to buy directly any of the services from the agreed plan, I don’t come across any bureaucracy in the process of releasing the necessary money.

In short, the statements from the patients define the attention they need, which often is a lot, should sound like a well conducted orchestra rather than a constant improvisation of uncoordinated artists; in addition it would be nice if the music they play was the one the patient enjoys.

The English, with their pilot tests, show us the Wagnerian path of care for complex chronic patients: a) active and informed persons, b) coordinated professional teams, and c) individualized plans adapted to each person's way of being.


Jordi Varela
Editor