In the NHS Leadership Academy’s Anderson Programme there is a workshop on Engaging People. In it we ask participants to share examples of good and bad engagement with patients, service users and carers, on the following three levels.
The level that most people struggle to find examples for is the one on ‘1-1’ engagement. Participants get that this is about the engagement of individual service users with a clinician or another professional, and they understand it is about things like shared decision making, self-management support and good care planning. But they often find it hard to come up with specific examples, so we wanted to share a story that illustrates the good and the not so good. The following conversation features two of our Engaging People facilitators. Lynne Craven (LC), has lived with Multiple Sclerosis for 20 years and jointly runs the Self Management Partnership. Jules Acton (JA), director of engagement and membership at National Voices, is asking the questions.
JA: Can you tell us of an experience where engagement with professionals didn’t go so well?
LC: Last year I was having some really challenging problems with my bowel, so my GP arranged for me to go and see a consultant who she thought would be good because of his interest in the nervous system. At the beginning of my appointment I spent 45 minutes filling in a questionnaire about my lifestyle, and then I sat down in front of him for 10 minutes answering questions about my diet and particularly my fluid intake. He then asked me to lie on the table and was doing a very intimate internal examination when he said: “you’re constipated, you need to eat more fibre and drink more water”. I already knew this, after all, that was why I was seeing him. There was no engagement; he had not listened and there was no mention of the questionnaire.
JA: How did that consultation make you feel?
LC: I left feeling that everything I had been doing was not enough. There was no support for myself-management. I went from feeling I was quite activated to feeling rubbish and de-activated. Anyway I decided he must be right and consequently I increased my fibre and fluid intake.
JA: What happened next?
LC: A year later I referred myself to the continence nurse. I still had the same problem and by then I was desperate. She was completely different.
JA: How was she different?
LC: She listened to me, really listened. She asked me to tell her about my life, my story. I trusted her, and felt she believed me. She then sent me away to do some investigating. I measured my fluid intake and output and made a food diary. I went back to see her two weeks later with the results which we discussed together. She said to me “it looks like you’re drinking far too much water and eating too much fibre”. I agreed. It was obvious. She asked ‘has that changed your bowel habit, has it solved your constipation?” It hadn’t.
JA: What was the outcome of that consultation and how did you feel?
LC: Together we worked out a better way of me managing and it’s just changed my life completely. I’ve stopped drinking over three litres of fluid and I now eat five a day rather than ten a day, and I’ve been able to accept that I need laxatives. I have been able to accept that I’m constipated because I have Multiple Sclerosis (MS). The continence nurse and I came together as equals and solved the problem together. That’s what good patient engagement feels like, I was an equal partner in that consultation. I was listened to and felt my role was important and that I could do this. I was fully engaged with my care planning and it’s worked.
JA: Your experience mirrors that of many people we meet through National Voices. If you were to offer health and care leaders some advice on improving engagement with you and with them, what would it be?
LC: Please listen and don’t make assumptions. And if you’re not a clinician, help create a listening culture in your organisation. The consultant I talked about assumed ‘this person has a really poor diet and doesn’t drink enough’ and he ignored what I’d been saying because what he was seeing told a different story but the bit he missed out was that I have MS and that’s what MS does to you.
‘The problem was he failed to listen and also the way he talked to me. Even very small changes make a difference to good engagement from clinicians, for example, there is a difference between asking ‘what’s important to you?’ and ‘what do you want’. What do I want? I want not to have MS, that’s what I want. What’s important to me is not to be constipated: that is something we can work on together.
The thing is, for good engagement on a one to one basis, we’re not talking about rocket science, we are talking about relatively small changes in conversations. That needs training and it also needs a particular approach. That’s why I got involved with National Voices’ guide to care and support planning which offers a way forward. There are other forms of engagement but this is the starting point, get it right and we will start to see real person centred care.
Jules Acton is Director of Engagement and Membership at charity coalition National Voices. She has worked as an engagement and communications manager in the NHS on a programme to reconfigure acute heart, stroke and major trauma services in the East Midlands. Prior to that she headed up communications at The Royal Society of Wildlife Trusts, leading the 47 local Wildlife Trusts; led the media relations team at WaterAid and was an award winning journalist.
Lynne Craven has lived with Multiple Sclerosis for 20 years and jointly runs the Self Management Partnership. She is widely recognised as an activated optimal self-manager. She now seeks out clinicians who are willing to work in equal partnership with her and who will act as a resource for problem-solving with her rather than for her. The difference is subtle yet massive.
Lynne and Jules are both facilitators on the NHS Leadership Academy’s Anderson programme, running a workshop exploring ways to improve engagement and how that can lead to person centred care. They were both involved in the Academy’s Fast Track programme, running a surgery on engagement. Jules also helped develop the Anderson and Bevan programmes, drawing on the expertise of people who use services and National Voices’ 160 member organisations, most of them charities and voluntary sector organisations.