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I joined the Q community in 2015 as a founding member. My experience and area of expertise in the community is from the perspective of a carer to young children. I have spent 400 days in hospital with my older son who was born at 24 weeks and I am looking after my younger son, who has cerebral palsy.

As a patient you can say these things, but being inside the health care system, we often cannot
Hospital manager

I have been doing some work with the team at the Health Foundation around patient involvement in Q. This morning I presented at the International Forum for Quality and Safety, together with Dominique Allwood. In our effort to try and synthesise what we could spend days talking about, into a 30 minute slot, I’ve been thinking a lot about patient involvement in the context of improving the quality of health and care. Why is it so hard?

When I was asked whether I would be interested in applying to be part of Q, I was already doing some work on patient engagement in my local network in London (giving training sessions for junior doctors for example). It felt like a tough process to complete the Q application forms, but I had made a decision that I would give it a go, filling in the forms as well as I could, making an effort to articulate what my work is, trusting that this will be a worthwhile learning experience for me.

And I think it has been. It took me a while to anchor myself in the formal setting of 230 other founding members in the Q events, but I quickly found a home in the group of patient representatives and also in my regional group. There were a couple of important invitational gestures that helped me to a more public platform. For example the first design event, first morning, I did an entirely spontaneous and unrehearsed video-dialogue with a doctor – I wouldn’t have done it without her encouragement.

Little ‘i’ involvement is … not enough. You can have very encouraging individual encounters, but you also need involvement with a big ‘I’

At the second design event I was offered by the Health Foundation to speak for 15 minutes in plenary with the brief to say “whatever I like”. This was a generous gesture, a gesture of trust that I felt I wanted to reciprocate. From then on, the conversations with other members became richer, one doctor said to me: “your words came exactly at the right time for me, I was at a point where I felt tired, burned out and unsympathetic to a particular patient of mine. Your words really reminded me of why I am doing the work I am doing, despite how hard it is”. A hospital manager said to me: “I was so glad when you spoke at the last event, because you said a lot of thing I would like to say, but I feel I cannot. As a patient you can say these things, but being inside the health care system, we often cannot.”

I felt proud to have made an impact and unlocked the possibility to have different kinds of conversations about harm and suffering that are important to be had and heard.

In return, being a member of the Q community has given me a far greater insight into how health care works. It informs my current practice in the neonatal network in London (I am the Chair of the London Neonatal Parent Advisory Board), where we are working on greater access to medical decision-making of parents through active participation in ward rounds and access to medical notes. Through Q, I am part of a number of improvement projects including this recent work to explore in more depth patient involvement in the Q community.

As an outsider to the health care system, I have been conscious to keep up my confidence in my ability to contribute. Looking through the ‘Habits of an Improver’ framework, I would tell myself that I have demonstrated all it takes to qualify as an improver. While in hospital, I have participated and actively contributed to 400 ward rounds. I had to think creatively to have my voice heard, have produced written materials – such as continuously updated one page summaries on the health of my children. And I bring these habits to my work in the neonatal world now. For example I am reviewing NICE guidelines that help shape medical policies.

Patient representatives enable genuine double-loop learning: improvement with feedback from those receiving the care.

As a patient representative, not employed by the health service, what I am looking for in terms of involvement is the extent to which this is practiced with a little ‘i’ and a big ‘I’. Little ‘i’ involvement is what I feel when in conversation with health care professionals: do I feel included, encouraged and listened to? But that is not enough. You can have very encouraging individual encounters, but you also need involvement with a big ‘I’. This is the extent to which the organisation as a whole makes me feel welcome and valued – how are patients referred to in publications, are patients placed upfront, as a starting point, a rationale for doing improvement work in the first place?”

I would say that for any improvement community, you need patient representatives in the room, as they can give that particular perspective from outside the system. How else would you know whether a better process is not just an improvement unto itself but actually validated by those who are most affected by it? Patient representatives enable genuine double-loop learning: improvement with feedback from those receiving the care.

Q definitely came at the right time for me; when I became a founding member of Q, I was off the hospital floor (literally), having recovered from the intensity of the time in a medical institution and ready to take on a more public role.

I am pleased that with the growth of Q and thereby its patient representation, the voice of the lived experience will maintain its valued place in this  community.

View Sybylle and Dominique Allwood presentation from International Forum for Quality and Safety 2017.