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Dominic Makuvachuma-Walker: Developing a culture of patient-centred leadership in the NHS
- 14 November 2013
Authors
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Dominic Makuvachuma-Walker
Dominic Makuvachuma-Walker, a patient interested in improving mental health care, spoke at our conference, Patient voice and power in the new NHS.
Dominic gave an impassioned speech to encourage the audience to involve patients in the delivery and strategy of mental health care, explaining that the emotional support he received from his peers had a huge effect on his own recovery in the 1990s.
Listen back
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Hi I’m Dominic. I haven’t got a presentation. I am the presentation! And there’s a reason for that, because I thought my approach is going to be slightly personal... more personal than I initially anticipated because of the journey that I have encountered, particularly in the last... well let’s talk about the 10 years. The 10 years is that I come from the Mental Health Survivor Movement. I survived a racially motivated arson attack which became a murder investigation in about 1994. A young mother lost her life in inner city London. That kind of freaked me out a little bit because my thought, my perception of race relations in England suddenly became slightly altered and skewed somewhat, and coming from Southern Africa - because this is where I come from, I come from Zimbabwe - I was very particularly in tune with the aspect of race relations and where there’s a bit of inequality where race relations are concerned, so I kind of clammed up and I coiled into myself for a number of years, and I relied primarily on a lot of support from peers, some of whom are here today. We set up a group of survivors in my local area in Waltham Forest where we were supporting each other under the auspices of survivor group - a ‘user group’ it was called.
The notion of leadership was something that was not apparent to us, and there was a reason for that, I think, because if I asked where is the patient leader - and I think of the race that Brenda was talking about - I realise that a lot of black people, particularly people from marginalised groups, we’re not on the same starting line as everybody else because more often than not we are more likely to be on the receiving end and of the harsher end of services, so the energy that I came onto the leadership programme with was very much about cynicism, about the patient... the term ‘patient’ I connected with the term ‘leadership’ because I have been in leadership positions in my post in my life before. I had a bit of a wobbly, shall I call it, a breakdown some might call it. And as I was going along with my life and coming to terms with some of the traumatic experiences and the after effects of that, one of the challenges that I also then encountered was that I was encountering a physical health challenge which became quite significant. It started off with symptoms with my eyes, it turns out that it’s called something called myasthenia gravis and that was a sign of a major tumour that was in my chest. I suddenly had to go for a major operation. For the first time in my life, I think, I felt ill.
Now there’s a big difference between my experience of injustice and trauma back in 1994 which got pathologised by the mental health services, compared to where I was 12 months ago when suddenly I was told ‘we’re going to have to rush you into surgery and open up your chest’. And then suddenly I started to understand the issues of access in a slightly different context, I mean I’m short of breath, well you can feel... you know, you’re kind of like a bit breathless, and that was something new to me, and my head is still processing things that I feel I can do physically yet I actually can’t. There’s a lot of changes that are happening with my body that I can’t square up with, and suddenly I’ve got to make my own adjustments about the way I manage my own time, the way I understand my world in comparison to the way I ran my life... as what I thought was getting into leadership positions takes less than 10 years of working into... in the health service economy.
I want to just specifically cite the fact that the starting line issue was quite interesting because I remember the Health & Social Care Advisory Services getting in contact with me and saying ‘I don’t think we’ve ever had an African Caribbean person on an Independent Homicide Panel yet, would you like to come and take part?’ And I said ‘well if you feel I can contribute something’... and we’re talking about 2008/2007. How can that be? That people who have been on the receiving end of such harsh treatment for so many years have never been on the same sitting... on the same panel with the people that they...that look after them, to try to give some form of advice?
I sat with Robert Francis - that’s where I met, Robert Francis, ironically - he was the Chair of the Independent Homicide Panel, and I spoke to him about something that was very interesting for me, the fact that the man that we were having an enquiry about did not want to talk to the enquiry. He was not there, he was absent and I thought I want to understand the man’s cultural background. That’s very important because there’s a key component of what he experienced that was missing. We need to understand that, so in the absence of understanding that, I think the next best thing that we tried and attempted to do was to try to unpack, back then, the culture that drove the man to do what he did - the NHS culture - and it was very interesting to see a few months down the line, because Robert was just starting the Stafford inquiry at the time that we were working on the enquiry... that I think did take on the aspect of thinking of the culture of an organisation that enables people to end up being boxed in or hemmed in or behaving in a certain way because they’re not looked after or given the right level of support sufficiently to the degree that they end up only when something significant, a serious and untoward incident happens, that people start waking up and smelling the coffee. We shouldn’t have been there, we should have been at the same starting line in advising how people should be looked after from in the first place before incidents happen, and I can’t believe that it’s only now that we’re starting to talk more positively about people like me, people like Brenda, getting into leadership roles, and I think... I eagerly away what role we will have within the collaboration with NHS structures and the Local Authority structures and... and see what role people like us will have in order to bring our lived experience and some of the culture changes that we may propose, for example peer support was much more important to me when I was in mental health services. The support that I got from my peers was much more significant than that which I got from the clinicians that were working and purportedly looking after me.
I’m going to leave it on that note, and end it there and hand it over to whoever. Thanks very much.
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