Podcast Episode: Whose Shoes?
Category: Mental health
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
MD - Michelle Drumm
GP - Gill Phillips
KH - Ken Howard
DH - Dorothy Hall
MB - Marion Brown
MD In this episode, Michelle Drumm from Iriss has a conversation with Gill Phillips, the creator of Whose Shoes? And Ken Howard, a media ambassador for people with dementia, who were up in Scotland from the 20th to the 24th of October to attend the European Alzheimer's Conference and to also run Whose Shoes? Events in Dundee and Glasgow. Gill told us more about the rationale behind and purpose of Whose Shoes? Again that encourages co-productive and person centred approaches. Ken, a keen biker who is living with dementia, talked about how he is working to help people live well with the disease.
GP So I am Gill Phillips, I am the creator of Whose Shoes? and it's been quite a story really, and one of the very early parts of that story was up in Glasgow, and I was invited up here by the Social Care Ideas Factory, so it feels really good to be coming back here today.
MD Oh right, so you were originally invited by Social Care Ideas Factory?
GP Yes, I think Charlie Barker just spotted it on the internet and she phoned me up and she said would you like me to come up, and I thought it was the classic, come up, and can you make this day in your diary, but it wasn't, it was something much more imaginative than that. So she was doing a whole programme over about 4 months where she was just inviting people who she thought had got good ideas to come up and do a little workshop for her, and I did ... I think we had about 40 people there from across Scottish Government, Glasgow City Council, various providers who are members of what is now the Social Care Ideas Factory, and we just had some really good conversations about what needed to change in the early stages of self directed support and so on. And they have been champions since, and I think that led to some relationships, Enable Scotland were very, very creative and they took on Whose Shoes? in quite an imaginative way, and were using the tool with people with learning disabilities and then it kind of grew from that, I think a big part of what I have been doing is building relationships with people who are passionate about what they are doing, Ashley Living in particular was very, very imaginative, and I know over the years she was using Whose Shoes? for things like recruiting for values, and buddying someone with learning disabilities with one of the applicants and just seeing where the conversations were going, you know, just taking one or two of the scenarios and finding out what peoples values were and short listing with the young people with disabilities to see who they wanted to work with.
MD And is Whose Shoes? your baby?
GP Yes, totally, yes. Well I used to work in local government and I was in Coventry and we were quite forward thinking in terms of outcome focused approaches and person centred approaches, and I got really, really passionate about that agenda, and I actually developed a ... I was running a workshop for them as part of a national conference, in terms of what we were doing a bit differently in Coventry, and I was very proud of it. And I developed a board game, then, called The Coventry Outcomes Journey Game, and it was based on Coventry ring road because I thought people would have come from all over the country and all got lost, so it was just a bit of fun and you can imagine something like that you are developing alongside your day job, you know you can't really do it in-depth, and when I saw how people reacted and responded to that and the scope really to explore and research personalisation as we called it then, in more detail, and I just saw the tensions that existed potentially between different policies, the preventative agenda, but actually the kind of growing cuts at that time, and different kind of viewpoints, so that to actually understand what it was like to be part of that major change, which was how I saw it and to hear grass roots voices, and I have just got this basic gut feel that the ideas are in the room, so that if people are enabled to speak and to contribute with that, you know perhaps the porter in the hospital sees is wrong, or could be so much better, but how do those voices get heard? So it became this concept of just getting anybody around the table, cut through the hierarchy and get them talking to each other.
MD And you saw a game, setting up a game was the most effective way of getting these people to talk to each other?
GP Yes, because it's informal and it's relaxed and, you know, because it's easy, I think there's something quite engrained in us that to throw a dice and just get talking together, rather than have a more formal, can you talk about these 3 points on your table and report back afterwards, it becomes very kind of samey and you just see peoples energy go, whereas with this you kind of see people ... I mean one of the things I found interesting, I was going to say you see them build a rapport together, and I sometimes say, well do you want to swap tables now and they don't because they have ... we never make a big thing about who they are in terms of roles and organisations, they just discover each other as people so that somebody comes along, possibly the Chief Executive, but they have actually got their own child who is disabled or their own mum living with dementia, and I think that's what I am doing that's a bit different, is just getting people talking together as people in that really relaxed environment.
MD So how does the game actually work?
GP Okay, so you have got ... it's A1 size, so it's big and it's colourful and it's vibrant and I have heard people call it the 'Monopoly of Health and Social Care', so it's very, very simple, you throw a dice, you are in a little team, you have got a little croc shoe as your counter and you land on a particular colour footprint, so it's bright with colour footprints going around, and there are 4 groups of people represented, so you have got managers and leaders, you have got frontline staff, you have got care providers or some sort of providers of some sort of services, it could be community services, and then you have got the people. So it might be, I mean this week we are obviously focusing specifically on people living with dementia, their carers, but also their next door neighbours, their informal network, because that's where I think the future is, in terms of building these networks and helping people to be as far from health services as they can, in terms of just enablement and empowerment and so on ... so coming back to the game, you land on, say a yellow footprint, and yellow represents frontline staff, so you are picking up a yellow card and you are hearing some sort of perspective by somebody and it could be, and I am saying in terms of health, it could be a consultant psychiatrist, it could be a cleaner, it could be a receptionist, but it could be anyone who has got that direct role with the public in a paid role, and you hear some powerful little scenario that that person is saying, and they are all sourced from real people, and people will naturally discuss it. And you couldn't possibly agree with everything in the game because they are built to contradict and to be really quite provocative, and people sometimes say, well I am sorry, I have gone off track, and I love that, because there is no such thing as going off track, it's finding the conversations that they want to have. So going back to those very early days with Charlie and the Social Care Ideas Factory, I think there were 5 or 6 tables, and as part of the game you are working together to build this physical path to personalisation, and the other tables were making progress and they have got through quite a few scenarios, and this one table, as far as the actual game and the tool were concerned, they'd made no progress at all, but I could see this fantastic conversation going on, so I left them, and then I walked around again, the same thing, they hadn't move on, and I said to them, you know, do you want to perhaps try something different, and they said no, we have never had a conversation like this before. And sometimes to get a small provider talking to somebody, say from Scottish Government, or the big ... Glasgow City Council, and to be actually finding something, a very real conversation, and I think it's equally beneficial from both sides because how do you reach out and actually talk to small people, rather than the representative group, which might be a different thing.
I think the key is to get them to go away and act, and I think that's been a learning experience, you know as I have got more confident perhaps with the tool and the workshops that I run, you kind of create more energy, and one thing I really love doing is have graphic recording of the events, so that people can see their comments go up live, it's very, very powerful, and also getting people to make pledges, so as a result of this event what will you do differently, and I think a combination of those 2 things, and I have literally had organisations going through one of these graphic records and saying what can we do about this? And I find a really powerful technique is, what can we do that's within our control? In which case, what's stopping us doing it, let's do it. So we have had some fantastic outcomes with that. Or, okay, whose control is it within? And I have had some very small people sometimes being like a dog with a bone, actually pursuing, you know we are going to meet with the local bus company, we are going to meet with the council, we are going to meet with the housing association, you know, actually ourselves we can perhaps have a newsletter for our people because they said that was something they wanted, communication could be better. We could have perhaps more events like this to bring people together. So those kinds of things.
We've come up for the European Alzheimer's Conference, I did a Whose Shoes? workshop, a big one, in Malta, a year ago, so I made some fantastic contacts there who have also become friends and I think that kind of social side of what we are doing is really important to us. But realising that it's a long way to come, we are coming up for 3 days, we have got this wonderful friend that we are staying with, so I pretty much put a Tweet out, you know well actually we could stay Thursday and Friday, how about it, what could we do, and Yvonne from Dementia Scotland Company, who, I hadn't even particularly come across until then, jumped in, filled the space, I got some wonderful existing contacts in Dundee, Ang came forward and offered Dundee United Football Club, and suddenly, I mean literally within the space of a couple of days, we had got a venue in Dundee, Dundee United Football Club, and Glasgow as well, and we are doing 2 workshops and that makes more value in terms of our trip and staying a bit longer in Glasgow, which we are thrilled about.
MD Great, so Ken, you are also attending these events this week, do you want to say a little bit about yourself and your story?
KH Yes, my name is Ken, I am 68 years old now, I have been diagnosed for about 8 years I think, I can't really remember. I am an old biker and I believe passionately in helping people to live well with this dreadful condition, and to helping people overcome whatever problems they may have, a lot of which are self imposed. You have a stereotype image of what somebody with dementia is, and you do tend to impose it on yourself, and so I want people to live well, I want them to learn to exceed their expectations, which they can do, given the right help. And the right care is important, and I am trying to help people realise that too much care is no good, it's as bad as too little care, it has to be the right amount of care.
How do you describe what good care is? Because I tend to think in headlines now, it's just how I am, and I thought to myself, you know, good care is like knowing when to pass the salt, and it seemed to fit and Gill liked it, so ...
GP So when it's out of reach, someone passes it to you, simple as that.
KH Because care has to be just enough and too much is really bad and too little is even worse. People have to realise we are normal, we are just ordinary people, we do the same as everybody else. I go down the pub, I listen to bands, and so I decided I wanted to use my vocal ability while I could, and so I volunteered for the Alzheimer's Society and did some work with them. I did a couple of TV things and some radio interviews for them, and then I met Gill, I can't remember how or when, because my memories sort of fade after about 7 days, and she allowed me to go to the Whose Shoes? with her and use my voice there, which has been brilliant, and then she encouraged me to make a pledge at the NHS Change Day event in Manchester, and so I pledged to try and help to change the diagnosis process, to make it more humane. And it seems to be working, we are gathering speed and momentum with that. It was my idea, my pledge, and I have several people helping me to bring that to fruition, Gill being one of them, probably the most vocal one, and basically the change I want to make is extremely simple, I just want to give everybody who receives a diagnosis, the opportunity to immediately, following that really, really brutal diagnosis, to be given a chance to sit and have a cup of coffee with somebody who has been living with dementia for a couple of years, somebody who is still making a success of their life, and that will mean that they will have hope. They maybe won't need the anti-depressants, they won't go down the depressive route that I went down, and wouldn't that be wonderful? And then from that it grew into an idea for helping to create a network of peers, I think of it as a little bit like a dating site, but it's not a dating site, a matching site shall we say, so 2 guys who are engineers living with dementia, similar age group, similar likes, could be introduced and maybe talk once a week on the phone. So you can form a peer to peer network of people who will self support each other. And there are schemes similar to that which are in operation now, but they tend to be online and it's a much bigger forum, and a lot of people don't react well in situations like that, they tend to be quiet and not say anything, whereas when they are talking to somebody one to one, they will function so much better.
Obviously isolation is dreadful and people with dementia become quite isolated, and a lot of them are really solitary and live on their own, and so they won't go to something like that. A lot of people aren't computer literate, so they can't take part in lots of the online forums. A lot of the online forums are also text heavy and me, particularly, I can't really read and write any more, so they are no use to me. I mean there's one they call the Dementia Mentors, and they have audio description over everything, so that's a really good site and they do some good work, but I think there is a place for a peer to peer network with local people talking to local people, making friendships, and I think it could help tremendously.
MD Do you plan to involve yourself in some of this?
KH Totally. I want to immerse myself in it and do everything I can, while I can. I think everybody who is an activist with dementia, we are very, very conscious that we have a fairly limited shelf life, and we want to do it now, and all of the official mechanisms we have to deal with, travel very, very slowly, much too slowly for us, so we all get quite frustrated about this. But I mean everybody is working towards the same end and luckily I have been given the opportunity to work with lots and lots of organisations, including the University of Worcester, who are absolutely phenomenal, and the Coventry Council have let me on to their Dementia Awareness panel, and so it's absolutely brilliant.
I have a philosophy about mental activity, you have to keep your brain working all of the time, and so, yes, and conversation is ... good conversation, sorry, is fantastic mental exercise, and it really, really helps. I mean the same as having projects and things to do, tasks, goals, we need that, but the system tends to take that away from you, you know they want you to be very safe and looked after, but not allowed to develop, and we all can develop and we can all do things.
GP We do things, Ken, don't we, some of that little workshop we did at the local church ... through to kind of international events, like the one tomorrow, and really everything in between, don't we?
KH Well yes, the workshops are really quite good because you find ... the game becomes totally irrelevant after you start to play it, because everybody around the table has to have a voice, and generally when you go to a conference and you are sitting around a table or a workshop, there's always somebody who never, ever says anything, and they probably have something really relevant to say, but because of whatever reason they won't say, and it takes that away. Once people start to talk, they start to talk and the discussions go to some amazing places, and the ideas you have already got are proved to be unfeasible for reasons, or they are being forced, and so it's brilliant, and I have never seen people walk away from one of the sessions not mentally buzzing and talking about what is going on and they seem empowered by it. And then obviously it's up to them to try and follow through with the actions.
MD And at the workshops, do you do some facilitation or presenting or ...?
KH I don't facilitate at all ... I am there as a decoration really, I ... I tend to introduce myself and then I will maybe drift between the tables and butting in to various conversations, and that seems to be the role which I am best suited for, and it seems to fit in with how the games are going.
GP I think you are underselling your contribution, in terms of everybody wants to have Ken on their table, and once we get him sitting on one table, I try and move him on and people, oh does Ken have to go, because actually they get that first hand experience, not just to stand up and talk at the front and tell you a story, which is fine, and there is a role for that, but actually to have those conversations with people and people asking Ken what it's like day to day, what do you struggle with, what can we help with, and to get to know you as a person. I think that's where you really do contribute, and people love talking to you in that way. So it just brings those barriers down, I think.
KH I do believe though that peoples care, I do believe everybody's care who is living with dementia, should be a co-production between themselves and whatever care agency is involved, and people should be encouraged to actually have a voice in their own treatment, because medically there is very little that can be done for me and people like me, except monitoring, so it has to be social, and so why not involve people while you make sure they are kept safe, allowing them to have a voice. And I think that is absolutely vital, and I think the language which is used to describe people with dementia and any kind of critical complaint, problem, needs to be looked at, because I hate to be thought of as being a service user or a customer, or a client, because all of those terms make you think you have to be passive and accept you have to wait for things to come to you. So, somebody who is really, really intelligent, needs to think of a word which can describe us and make us believe that we should have a role in our own treatment.
MD They say a bit about their work in Kent.
GP I think it will be interesting to talk just a little bit about the project we have done in Kent, because I think it embodies what we are trying to do, in terms of empowering local people and kind of lighting fires that continue beyond the length of the project. So for me it's about finding the right people, finding passionate people who really care and want to build something locally, and you can't be clear at the beginning of any project, well the kind of work I am involved in, in exactly where it's going, but to kind of let it take it's own course and find where the passion and the interest and so on is. So we were commissioned to run 16 workshops around Building Dementia for Any Communities, and the people down there have now run 22, and counting.
Linking with young people was never intended at the beginning, I think it's been great in terms of people letting down the barriers in terms of exactly who is doing what and just working together, so the local Alzheimer's Society, local Age UK has been particularly ... 4 branches of Age UK, the Council, the NHS, some of the NHS Change Day people, just getting together to make a difference, and along the way we have discovered the Catch 22 Charity, and Sandra and the team down there have run, I think, already 3 workshops for young people and got them volunteering in their day centres, and starting to take an interest in dementia, and of course they take that back into their families, just like children with recycling, you know, Mum what are you doing throwing that plastic pot away, if you can get through young people, and similarly, we didn't know where it was going, but the WI have embraced it, so they wanted their own session for one of their branches, the Police have come along, we have had the Community Police come in, and I think just to be seeing those people, and people from Waitrose, I think the Paddock Wood Waitrose, and it's the best kind of PR they could do, because nobody has set out to do an advert but you get a group of local people sitting around and saying, well really if you want a dementia friendly store, that's where you want to go. And we actually followed it up and checked, do they actually do formal dementia training, no, they don't, they do kind of people, good practice, good customer care training, which basically it takes those labels away, so those are the kind of projects I am proud of really.
MD On the 24th of October, Iriss.fm attended a Whose Shoes? workshop in Glasgow, hosted by Dementia Scotland Consultancy and Training. We spoke to Dorothy Hall, an independent social worker, who gives her thoughts on Whose Shoes?
DH My name is Dorothy Hall, I am in independent social worker. I came across the tool because I work for Coventry Social Services and I knew Gill very well, and I knew she had developed this tool but I didn't really know what it was because I was too embroiled in my own job. But I was actually actively involved in setting up individual budgets in self directed care, in a pilot scheme, and then when I saw Gill's tool, it was all about the implementation of personalisation, which is a direct link to individual budgets and self directed care, and what the tool represented was the values needed to actually implement self directed care. If you don't have the values, self directed care ... the organisation of self directed care has no meaning, so from that, from me seeing the tool and how relevant it was in terms of the values that led to how service delivery could be changed, I then started to support Gill in a facilitation role in appropriate venues. Subsequently I have moved on, I have done it several times with her and I am up in Scotland now because I am actually involved with my brother in law, who has had a self directed care package, and I have come across all of the glitches that I can see, a part of the beaurocracy of the social services department implementing self directed care, so I am actually going to talk a little bit about that this morning, so I have seen the whole process from the government have implemented a policy of personalisation, which has led to self directed care and individual budgets, and on the back of that, this tool actually enables people to really think through their values, about how they do it, and I can see it working on the ground, in actually just an ordinary person trying to use services in Scotland for my brother in law, I see how relevant this is, because of the values that are often missing, so the kind of awareness and knowledge that's missing and the lack of joined up services that are missing.
MD What are these values?
DH They are all about seeing the person ... the person themselves is the expert, and they should have a choice about how they have their care delivered. They shouldn't have a service forced on them. The whole business of assessment is seeing the person after an event and not taking into account the person as an individual before the event, and fitting the assessment into a burocratic assessment that results in a beaurocratic service. So it's all about unpicking that and seeing the service and the person and the assessment from the starting point of how they were before they needed the assessment.
MD before the event, I spoke to Marion brown, and area manager at Richmond Fellowship, about her hopes for the day.
MB I am Marion Brown, I am an area manager in the Richmond Fellowship Scotland, and we have a registered service for people with dementia for day opportunities in East Renfrewshire. I am here today to take part and listen and learn from people who are in the coproduction, in the play, of Whose Shoes?
MD What do you hope that will achieve for you today?
MB I think it can achieve learning and understanding, more awareness, I think, we can always have that. Well I think I can always impart that knowledge to other colleagues and to people we support as well, anything I have learned from it. I think one of the things about any form of training is to have different ways that you can do that, so that everyone is not just there participating and learning and not just being talked to.
MD I also spoke to Marion after the event to hear her thoughts.
MB I really enjoyed it, I really enjoyed using the tool and interacting with everyone and the table and having the discussion and the game prompted the questions and everything and it was really good. Having people coming and speaking about their experiences was great. Particularly with Ken with the Hairy Biker Tour and Gill and everything, and describing what they were doing, it was wonderful. I think we roll that out to the team that we have and then extend that to other people, because at the beginning it was getting to understand the game, very much like monopoly, so it's rolling out and involving other people in it.
MD Yvonne Stewart, Director at Dementia Scotland Consultancy and Training, told us how she got involved with Whose Shoes? And the importance of the approach.
YS I actually came cross the Whose Shoes? concept on Twitter, and had been looking at some of Gills Tweets and what she was doing, particularly down in Kent, with the dementia friendly communities, and it's something that I thought coproduction, the whole language around it, sometimes is so exclusionary and I like the fact that the tool was just so basic, so simple, such a simple concept, anybody can use it, it doesn't discriminate, and it includes ... and I thought that's really something that we could do with and use in something like that in Scotland to help when we are having those discussions about creating dementia friendly communities, about mapping local communities, having those kind of discussions, or even just within our own organisations, we all have different roles and functions, and just understanding how those all work together. So I came across it on Twitter, thought that it actually provided a solution for me at the time in thinking well how can we get people to understand this idea of coproduction in a way that really makes it much more accessible to them, and I am just so pleased that Gill has actually been able to come up to Scotland and share the whole concept and idea with us, and hopefully we can all start to take that forward in our own jobs and localities and areas.
I think it's really important that we involve people that we are supporting in all discussions that we are having as much as possible, to harness those assets and resources that we all have, because sometimes as a professional, we have a particular view of how a problem will be resolved or how a particular challenge can be overcome, but really it's the people with the lived experience of what that's like receiving any kind of formal health or social care service, that can tell us, as professionals, how to really make a difference in their lives and what it means to them sometimes when the system gets it wrong, and it can help us to look at that system and say well how can we change that and adapt that together so that it's much more effective? And the money that we spend really goes as far as it can possibly, but I think it's always good as well about helping us to all understand the different roles, the different jobs that we all have to do, the different aspects of what we take in to consider when we are making the decision, and understanding the complexity of some of that, and how it happens, but also sometimes we've developed processed that we've not changed in a number of years and maybe it helps us to reflect and think, well can we change that, how can we change that, how has life moved on, and sometimes it's just really having that understanding of those different perspectives that will enable us to take a look with a fresh pair of eyes, so a new pair of shoes and a fresh pair of eyes.
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