Join us today as this week’s guest, Joanne Douglas, takes us on a compelling voyage through her advocacy work, where stories transform into instruments of change.
Joanne is a force of positive change in the realm of health and social care. Formerly a journalist, Joanne now uses her talents as part of Healthwatch Calderdale, where she empowers transformation through the power of people’s stories and experiences. We’ll learn how her experiences as a journalist have prepared her to amplify the voices of those she encounters, weaving a tapestry of understanding and compassion that connects us all.
We’ll also hear two beautiful pieces of poetry that were created by some of the people Healthwatch works with to express their lived experiences. Please be aware that these poems share personal experiences of pain and of end of life care, so please skip this section of this episode if you feel that listening to them might not be beneficial for you.
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Joanne is a former journalist who now works for Healthwatch Calderdale as an Engagement & Information Officer, aiming to use people’s stories and experiences to empower positive changes in the health service. Her role involves getting out into communities to meet people and listen to people’s experiences of health and social care.
She also has an interest in early years and is a member of the Calderdale Starting Well board that aims to improve experiences and outcomes for families, and she’s also part of the Calderdale Involving People Network that works with all voluntary, community and strategic sectors to make sure the people they meet and speak with are heard.
[00:00:02] – Samantha
Welcome to Calder Navigation, the podcast that embarks on a transformative journey through the lives and stories of the incredible people of Calderdale. I’m your host, Samantha McCormick, Artistic Director and founder of Curious Motion, and I’m thrilled to have you join me on this adventure. Calder Navigation invites you to open your hearts and minds to the tapestry, everyday moments and significant events that shape our lives. Through authentic and relaxed conversations, we’ll delve into the complexities of what it means to be human, celebrating the diversity and resilience of our community. This podcast is not just a collection of stories. Each episode is a unique exploration, a tribute to the rich tapestry of our shared experiences. So come and join us on this journey and let’s celebrate the remarkable individuals who call the Calder Valley home and let’s uncover the depth and beauty of the human experience together.
[00:01:00] – Samantha
We are thrilled to welcome Joanne Douglas, engagement and information officer at Healthwatch Calderdale, to Calder Navigation. Joanne is a force of positive change in the realm of health and social care. Formerly a journalist, Joanne now uses her talents as part of Healthwatch Calderdale, where she empowers transformation through the power of people’s stories and experiences.
[00:01:24] – Samantha
Joanne’s dedication is unwavering as she ventures into communities eager to listen and understand the challenges faced by individuals in their journey through health and social care. Her passion for early years shines bright too, and she’s actively involved in the Calderdale Starting Well board striving to create better experiences and outcomes for families. Beyond that, Joanne is a crucial member of the Calderdale Involving People network, ensuring that voices from all walks of life, from the voluntary to the strategic sectors, are heard and respected.
[00:01:58] – Samantha
Join us today as Joanne Douglas takes us on a compelling voyage through her advocacy work, where stories transform into instruments of change. We’ll learn how her experiences as a journalist have prepared her to amplify the voices of those she encounters, weaving a tapestry of understanding and compassion that connects us all. We’ll also hear two beautiful pieces of poetry that were created by some of the people Healthwatch works with to express their lived experiences.
[00:02:28] – Samantha
Before we head into our conversation with Joanne, please note that the audio quality for this episode might not be up to our usual standards. Joanne and I met online for this one, and I’m sure you can imagine what technology can be like sometimes. We hope you’ll embrace the technical imperfections with us and enjoy Joanne’s brilliant insights she so kindly shared.
[00:02:51] – Samantha
[00:02:52] – Joanne
Hi, Sam. Thank you.
[00:02:54] – Samantha
It’s nice to have you. You’re one of our very first guests, so it’s lovely to have you and can bear with me while I get into the swing of doing everything. So it would be great to know a bit more about Healthwatch in Calderdale, and if you could just give us a bit of a rundown of what Healthwatch does, and particularly the difference that it aims to make.
[00:03:16] – Joanne
Yes. So Healthwatch Calderdale is actually an independent organisation, and we sort of describe ourselves as a champion of people’s voices in health and social care. So it’s about us aiming to listen to people, to support them, sometimes to inform them with information that might help them that day. Or we sort of work with them over long term to provide them with information. And then we use their voices and their experiences to act positively, to bring positive change or to make the case for change. And sometimes that isn’t an overnight thing. It can be-, can take many months of working with people and to understand their experiences, but we aim just really to listen and to try and make a difference in health and social care.
[00:04:02] – Samantha
Great. So, yeah, are there different Healthwatches around the country as well?
[00:04:06] – Joanne
There is. Each authority area has-, it’s like a statutory service and Healthwatch in Calderdale, we’re a small team. We aim to get out and about as much as we can, meet as many people. And then we also sort of work on the phones, we work on social media, we provide information on Teams, on Zoom. So there’s many different ways we try and connect.
[00:04:29] – Samantha
Amazing. And what does your job in particular involve?
[00:04:32] – Joanne
Yeah, so it’s about trying to listen to people and start conversations. So we go to groups, we go to community centres, schools, drop ins, Scouts, organisations. I’m a Cub leader myself, so I’m used to working with young people. And while we don’t give medical advice, we’re not trained to give medical advice, what we do is we sort of ask them to tell us about their experiences of health and social care. So it might be a review of a service that they’ve used recently and they might have positive feedback. And we always share positive feedback because positive stories make a real difference, don’t they? If you’re working in health and social care at the moment, sometimes knowing you’re doing a good job matters.
[00:05:16] – Joanne
But sometimes people have had poor experiences and those poor experiences can maybe help shape change. Or they’ve got ideas of things, ways that could be done better. So it’s about getting out to meet people, speak to people, sit and have conversations, just chat like you are and I are doing, and then us coming away and thinking, okay, we’ve heard somebody else say this, maybe a few months ago, we heard somebody else say it again, so is there something here that we can work on? And we bring it all together and try and make a case for people for change in the health service.
[00:05:53] – Samantha
Yeah. And I know that you’ve made-, there’s been some really amazing things that Health Watch has managed to do. And there’s a lot of, I suppose, things that happen behind the scenes, I suppose, in a way that the public maybe don’t see or hear that much about, other than maybe being able to share a story but the point is where does it go next and what’s the impact there? So I know we’re going to chat about that in a minute, but I was just wondering before we get to some of the examples of some of the things you’ve managed to do and particularly where some of the greatest impact has been, I was just wondering how you find people to chat to? Do you go to lots of different groups? Do you talk to people one to one? Is it quite varied?
[00:06:35] – Joanne
Yes, one on one conversations you tend to get better type of conversations if you give people the time to speak about themselves and sometimes people don’t feel confident speaking in a large group. You put me in front of a group of 20 people, I might stutter a little bit, the conversation flows a bit better and it also just brings more personable to it. You get to know somebody, they get to know you, they can judge if they trust you. And that’s what we aim to do. We aim to be sort of a trusting organisation where people feel they can sit comfortably and talk to us and that sometimes means looking at what barriers they might have. So do they have a disability? Are we disability aware?
[00:07:14] – Joanne
We do lots of training but actually, the more you’re in front of people with a disability, the more you understand and can relate. Or if we go into somewhere where people speak English as a second language, should we be taking an interpreter so they feel that we are truly understanding them? So it’s all about really just trying to understand how we can be as open as we can with people.
[00:07:34] – Samantha
Yeah, I bet there’s sort of a continual learning as well, isn’t it? Must be so unique for each person.
[00:07:40] – Joanne
It is, it is, yeah. And you can’t be complacent in it because you’ve done it before, you can do it again. Times change and move on and we were always learning.
[00:07:51] – Samantha
Yeah, I bet. And I bet there’s a lot-, the world at the moment, there must be so much stuff to talk about and collect. So I know personal stories are really the key, aren’t they? It’s those individual stories and I just wondered if you could share with us a couple of examples of maybe one or two of the stories or projects that you do. So I know there’s been some real great change, hasn’t there? Positive change through some of the projects that you’re doing and there’s some particular examples as well that you’d like to share so it’d be great to hear about them, if that’s okay.
[00:08:26] – Joanne
Yeah, so we know something may be happening but sometimes our words aren’t enough if we haven’t lived it. So when we go out and speak to people and they say, okay, I’m autistic and there are no support services for us or we feel that there is a barrier for us in this service, we really listen and try and do-, and sometimes it’s about providing feedback to that one service in the hope that they change. But then we might hear it from another person and we see a pattern of work evolve. And one of those was in autism itself a few years back. And my colleague Joe was going out and she was hearing repeatedly the difficulties people with autism were having. So we got a few people together and said, okay, what next? What do we do next? Tell us what you think, what are your ideas? And we began to explore a project with them and we worked-, but firstly, we had to build a relationship with them. We had to sort of go in and really understand their own stories. So their stories were enough to make us realise, okay, we have to do some work here, we can make a positive difference here.
[00:09:26] – Joanne
So that’s the power of their story initially, it was making us as an organisation sit up and listen. So we then put ourselves in front of them. You can create surveys online, but sitting next to somebody and hearing them talk, especially if you have any sort of autistic condition, it’s so much better. And the project ended up going before the scrutiny committee at Calderdale Council, which was quite nerve wracking for my colleague, but she did an amazing job in taking this project through. But what she also took was people’s voices and their ideas for positive change and what they were telling us about the lack of support services in the communities, having to explain themselves repeatedly to somebody in the health service that they’re autistic, whether health facilities are sort of geared up for people with autism, are people trained in autism?
[00:10:22] – Joanne
So there were a lot of things that we could take to the counsellors and say there needs to be some reasonable adjustments made. But one of the things that they did was they heard the voices of the people with autism at this scrutiny meeting and then we presented our own case and from that they decided to form the Autism Hub, which is a support service for adults.
[00:10:46] – Joanne
So people’s stories, they made a difference to us at Healthatch because we decided this is a project we feel we need to do. Those voices then continued to go before councilors and the councilors decided to put some money into support services. And that all started with one or two people coming to us and us joining the dots and making a positive difference. There will always, always be work that we can do here and we’re never complacent, but it just shows that one voice leading onto another, leading onto another can really have a major positive impact.
[00:11:19] – Samantha
Definitely. Can you tell us a little bit about what a scrutiny board involves? Because to me, I do sit on some charity boards, but I haven’t ever been in part of any of the sort of council related and I know there’s lots of them and sometimes I think you can feel a bit removed from all of that, not really understand what any of that means. But obviously this is a place where real change does happen.
[00:11:41] – Joanne
Yeah, it does. So firstly, people can watch them online, they broadcast them and stream them online so they can watch the councilors making decisions. But what it is, it’s a cross party meeting of councilors and they’ll be chair and there’ll be a number of other counselors and they’ll have an agenda, so they’ll develop work streams into different themes. So autism was one. I took something about children and adolescent mental health services to Scrutiny, and what it involves is us putting in some information, the counselors perhaps seeking advice from NHS organizations, from other support services, pulling all that information together, really scrutinizing okay, what is the offer here? What is the problem? What are the pros, what are the cons, what more can we do? And then they make recommendations. So it’s a real in depth look into a theme or a service or an idea, and from that they can look, do we have the money to do this?
Should it be us doing it? Should we be sending somebody else to do it? So it’s a deep dive into something and it can be a little bit intimidating going in and sitting before a lot of counselors because it’s a public meeting as well.
[00:12:54] – Joanne
Like I said, they stream them online, people go and watch them. But I would say see it as a positive because you can go and make a positive change and it might be that they see in that time and that day that they don’t have the money. But the idea is sown isn’t it, it’s there in the background, it’s there or maybe in a few months down the line or a few years down the line for them to come back and say, we’ve heard this, we’ve heard people’s voices on this, let’s see what we can do now.
[00:13:21] – Samantha
Yeah, definitely. I can imagine it is quite intimidating, but also that feeling of being able to contribute and make change and be part of supporting our wider community is really, I suppose, helps you deal with how intimidating it could be, I suppose, yeah.
[00:13:39] – Joanne
And for Health Watch as well, we go there and we may or may not have the lived experience in that actually. We can go and be an independent voice there, but also a sportive voice. For the people who do have that lived experience, sometimes they might need the handholding, sometimes they might be confident to do it themselves and it’s just about us recognizing what we can do to support them.
[00:14:01] – Samantha
So also you have people with lived experience are actually present at the Scrutiny as well.
[00:14:06] – Joanne
Yeah, on other boards we sit, on, other meetings we go to, we always try and say that the person’s voice is perhaps more valuable than our own sometimes. And it’s about finding ways to bring that voice. Not everybody wants to go and sit at a meeting and talk to people. That’s not where their confidence lies. We can bring that voice and we read their words or we speak of their experiences, then we’re still supporting them.
[00:14:33] – Samantha
And can you tell us, you said particularly with people with autism, that resulted in the autism hub. Could you tell us a little bit about that?
[00:14:41] – Joanne
Yes, it’s like a support service pre COVID they had a couple of sessions throughout Calderdale each week and people could go along and there were people that support them. During the lockdown, things changed and as it’s come out on the other side, it’s still providing that support for people. And it could be like, information, signpost in west go and get advice on this. And then it’s also a social group as well for people who share an experience with each other.
[00:15:10] – Samantha
Wonderful. It’s just really nice to hear about the result of these things, isn’t it? And the power of being able to share that information. So there was another project, I think this one’s running at the moment, called the Never Heard Project, is that right?
[00:15:25] – Joanne
Yeah, that’s correct. So we look at our data. So from all of that, we can see who we’re speaking to the most. And what we’ve looked at is who aren’t we speaking to? And it might be that we have spoken to them, we just haven’t asked the question, or they’ve not wanted to share that information with us, so we’ve not recorded it. Or it might be that we need to do more work there. So we’ve just finished the first phase of Never Heard and that was about going speaking to people with learning and physical disabilities and people with long term conditions, especially children. And it felt so positive, actually, we did some really lovely things. So I went and met a group of adults with learning disabilities and we actually met in the park and had a little walk around and collected sticks. And I asked them what their superpower was and they said really lovely things like my smile or I’ve got good jokes and they tell me a joke. But from that we can start the conversation and we’d ask them about what they think about how the health service deals with their learning disability, what they worry about.
[00:16:29] – Joanne
And all of this information that they give us gets sent to the NHS organizations and they can see, okay, we’ve had a group of learning disability people talk to us about X, Y and Z and this is what their experience is. So that was really positive. And the other one was about children with long term conditions and a lot of those tended to be children with autism or neurodiversity or children with mental health needs. And we just did sort of an explore of how it affects their daily life. So if you’ve got a long term condition and maybe you have multiple health needs, the time for appointments, how do you fit that around school life? How do you fit your parents or your carers? Fit that in around the work life? What does it feel like to have this long term condition and who helps you manage it? So we just concluded the first phase of that and we did some really lovely things. We created a scrapbook of all the feedback. When I was in the park, we actually made some tags and we hung them on the railing. Somebody told me she had tidy them away at the end of the day.
[00:17:31] – Joanne
So we weren’t littering, but we made tags and people wrote, like, see my smile, not my learning disability. And we saw people stop and reading them as we were in the park. So it’s about trying to help these people communicate how they think and feel with a wider range of people.
[00:17:50] – Samantha
That’s great. And I suppose this leads into how you use creativity in capturing those stories and making that process of it’s a very vulnerable thing to share. Something about your life experience or lived experience of disability or mental health, anything related to your health and well being. And I suppose, I mean, I’m very biased because I work in the arts and I run an arts organization, but there is a lot of, I suppose, potential with a creative approach, isn’t there? And it helps in my experiences, help people access a way to share their stories in a way that feels really positive for them and will make change in society or with that service or whatever they’re hoping what the outcome is going to be. I wonder if do you find when you’re using anything creative, such as the little tags that you are hanging up or I know you’ve used poetry and things like that before, do you find that people are able to tell you a little bit more about their experience? Do they go a little bit deeper over time with the support?
[00:19:01] – Joanne
Yeah, definitely. I think historically, the way services run, not just Health Watch, but the NHS and the councils, people would put a lot of time into writing reports. But actually, is that the way to make the most impact? And who do we do we also need to speak beyond these services? So the thing about the little tags, there was people in a park reading those, it was having the impact straight away. And we then do take it to these sort of strategic meetings and we sit and we go into a lot more detail. But actually, even with them, the scrapbook idea, hearing the audio with somebody writing a poem and their own voice, it still makes an impact at that level. And we can then take it further and deep dive into the analytics and the data and the ideas. But actually, the creativity, I think, engages people from the outset because they see all these colorful tags and all these colorful pens. It makes them pick them up and want to get involved.
It’s an icebreaker. It starts the conversation. But also for adults with learning disabilities. They’re not going to read a report, but they are going to see this visual thing of somebody’s hurting today, somebody’s reading my words today and know that they’ve made a difference.
[00:20:16] – Joanne
And sometimes it can be quite hard saying to people, what difference are we going to make? It’s not going to be today. It might be two or three months down the line when we were able to come back to you and say what impact we’ve made. But with some of those things, we can make the impact today. We can make other people hear you today. And that, I think, is a really important thing to realise, that helping people one on one, helping people understand each other one on one is as important as helping big groups of people understand each other.
[00:20:49] – Samantha
Definitely. And I suppose it’s those individual stories and words that-, I suppose they connect to the thing that makes all of us human really, isn’t it? It’s that, the things that connect us, no matter what our differences might be, you know, smiling, all those words that you just said, most human beings will connect to that in some way. And being able to make that, one, accessible for people who want to share their lived experience, but also then accessible for the wider community to actually listen and take that in and learn something from themselves. It’s really powerful. And I suppose that’s really how we make the long term change. I assume that’s a massive challenge. But the more that our general community is able to share in these and connect to them and relate to them, then I’d hope that the more difference it makes.
[00:21:43] – Joanne
Definitely, definitely. And what we’re able to do with people as well is try and connect them to each other. So when we’re walking around and someone say, no, I’d really like to go and watch more concerts, we might know of an organisation that links them up and the Square Chapel and the Piece Hall, they do all these events and there’s volunteers there who can help link people up, so while we’re hearing people, we’re always thinking as well, how can we also help you? How can we also enhance your life and use what you’re telling us to make a positive difference? And it’s really quite inspiring actually, listening to people and walking away and thinking, do you know what, I’ve been able to help them today with a little bit of advice. I’ve been able to help them share how they feel a little bit. And that’s quite a nice feeling.
[00:22:32] – Samantha
I suppose it’s along the lines, we talk a lot in the arts about co-creation or co-production or whatever you want to call it, co-something. And I suppose it’s that very similar thinking, really. It’s about everybody being able to work together and be supported in whatever you need to be able to share your own experience, understand other people’s experiences and be led by people with lived experience, which is just so important, isn’t it? Particularly when we’re looking at health and social care services.
[00:23:04] – Joanne
My own lived experience is I’m a mother, I have two young boys, and I got involved in the staff and well board in Calderdale, because I have a real focus on the early years and a real interest in early years. And I think if you can get the early years right, it should progress through life, shouldn’t it? You know, it would be-, cotton on to what our young people need. And that’s been a really inspiring thing for me to be involved with because I bring my own experience of having children. I bring my experience of working with young children in Scouts. I speak to kids all the time and understand what they feel like. I know what mothers and parents feel like and it’s having the lived experience, having somebody like us who can maybe be a bit more independent and look and go, okay, what’s a reasonable expectation here? What can reasonably be done? Is it about communicating to people what their expectations should be? But yeah, it’s a massively positive way to try and inspire change.
[00:24:01] – Samantha
Definitely. And what’s it like for you? What’s your experience doing your role? What does it feel like for you personally, if you’re happy to chat about that? Because I think a lot of the time when we’re talking about services for the community or the health services, or we’re talking about the voluntary sector, we talk a lot about the people that the services are for quite rightly. But also I think it’s important to remember that we’re all actually affected by these different services in different ways. And I just wondered, what it’s like-, what does it feel like to do your job? What does it feel like to make that change and be part of capturing those stories?
[00:24:39] – Joanne
It feels like a privilege, to be honest, just really seeing and hearing and documenting people’s lives. When I was a journalist, I used to do that, and journalism actually feels really negative sometimes and that would bring me down. This feels a lot more enlightening because actually, you get to spend more time chatting to people. When we go out to organisations, we sometimes do sort of interactive stuff. I once took a giant Connect Four game and we were chatting to people as we’re playing the game, but it feels like a real positive way to make a difference. And it’s nice just sitting, chatting to people. It feels-, the time goes quickly. I work three days a week, but they go very quickly when I’m out and about meeting lots of people. I feel quite lucky to be able to go into all these different places, people with different backgrounds, different experiences, and to be able to hear them. And sometimes it can be quite challenging.
[00:25:31] – Joanne
We’re doing a project across West Yorkshire at the moment about the end of life care, and we’ve been speaking to people about their experiences if they have been put onto an end of life pathway. We’ve been speaking to their loved ones if somebody has passed away recently, or people who have been told there is no more symptoms and their loved one has been told there are no more symptoms. And that’s a really hard thing to do. But I just tell myself, we can make a change here, we can really understand people, we can listen to their experiences.
[00:26:03] – Joanne
And last week I was chatting to a lady and she cried and I began to well up as well, I could feel myself going. But actually-, and she said to me at the end, how do you deal with it? And I said, because I know eventually someone will hear your voice and it’ll be through me and it’s my responsibility to tell that story in quite an authentic way, in an honest way, in a respectful way, because she had a difficult experience. But she’s also speaking out because she hopes that she can make some positive changes. She hopes people will be able to relate to her. So it feels quite an honor, even when you’re hearing difficult things, for people to share this personal stuff with you and trust you with it and know that you will hopefully respect it and do some good from it as well.
[00:26:49] – Samantha
Yeah. And I think that is fairly common in the sense that people who have had challenging life experiences in many ways, and challenging is different for different people as well. But quite often a way to-, I mean, from my own personal experience when I’ve had particular challenges in my life, being able to do something positive with it, it can be really powerful, can’t it as well for your own well being, as well as hoping that you can make some change so that another person’s experience maybe is improved or more people know about something or whatever it is. And it does seem to be something really valuable for people who have got that lived experience to be able to make that difference if they choose to.
[00:27:35] – Joanne
Definitely. And during lockdown, I just planned some work about-, with a lot of children who were home educated or children who are sort of educated within the community. Sometimes they meet up in little groups and they do sessions together. And then lockdown happened and I got in touch with them and said, it doesn’t feel right to do what we’d planned. Said, will you all share a song with me about how you’re feeling, but don’t tell anybody else what song you’ve shared?
[00:28:01] – Joanne
So they did. They must have come back with about 20 different songs. And what I did was I created a playlist and then we shared it. And it was a playlist of their moods, of how they were feeling at that moment. And the song reflected their moods. But we got some great songs, some I’d not heard. We had some Little Mix, some Ariana Grande, the Yeah Yeah Yeahs, The 1975. But it was recognising that they were going through something difficult, they were feeling something. We looked at a creative way for them to convey that. But then creating the playlist that they could then share with each other was a real positive thing, just-, and it’s not something that Healthwatch maybe would take to a board to do, but actually we shared it on social media and a lot of the people within the NHS on Twitter were sharing it and liking it.
[00:28:45] – Joanne
So people saw that, people heard that and it might have just been that brief moment that they were aware of it, but it made an impact and those young people all listened to the playlist and were sharing it, critiquing each other’s songs.
[00:29:00] – Samantha
I can imagine. I love getting music requests from people, especially young people, because I learn a lot. I love it. And again, that sort of-, music particularly is a great way of people being able to express things or just process their emotions and also share with others without having to tell somebody or talk about it, which for some people, it’s just not the right time. Or you’re not the right person to talk to. Or there’s lots of different reasons why talking about it isn’t always possible or appropriate. Yeah, that’s great. Is the playlist still available?
[00:29:36] – Joanne
It is. It’s still on our YouTube page. (audio cut out) They’d find it on there.
[00:29:41] – Samantha
I reckon we could put it, a link on our show notes if anybody wants to go and have a listen. I’m definitely going to have a listen. It sounds really good. And I know we’ve got a couple of other examples directly from some of your-, do you call them service users? Do you call them beneficiaries? What do you call them?
[00:29:58] – Joanne
Service users, clients.
[00:30:00] – Samantha
Yeah. So directly from your service users about their own experience. So we have a poem and then we have-, but I just wondered if you could give us a little intro to each one. Would that be okay?
[00:30:12] – Joanne
Yes. So in looking for creative ways for people to tell their stories and it be in their own words, we recorded-, one lady recorded a poem for us and that was part of our Never Heard project. And it was about her and she has long term conditions and it’s about her feeling heard and feeling that her pain isn’t seen. It’s something she feels, but it’s not a visible thing. It’s not something that is noticeable. Perhaps you would look at her and not know she lives with pain. So she wrote a lovely poem and she recorded the poem for us. And it’s quite sad hearing it, but actually, it’s quite an empowering way for her to tell her story in her words. There’s a lot about disability and hidden disability and a life of pain. That’s her story, isn’t it? And then the other audio was the daughter of a mother who received care and the daughter who provided the audio, she had carers going into her home and she talks about seeing their smile and when they used to come in with face masks, she wouldn’t see their smile and what that felt like to her. So we had her words that were recorded by her daughter and I think it’s quite impactful listening to that.
[00:31:32] – Joanne
If you are housebound and you only have carers going in a couple of times a day, the number of people that you interact with is quite low. We don’t see them, we don’t hear them very often. Their only company might be these carers and family going in and the television or the radio. So quite empowering and impactful, I think, to hear those words spoken about what it feels like to have somebody come into your home and provide care for you. And both of those poems, we put them out on our social media, we shared them, but we actually also take them to the people who provide care services or health services and we share them with them as well. So they’ve been heard at that level as well.
[00:32:12] – Samantha
And they are quite like you said, you could listen to them and think, oh, this is quite sad or negative or whatever, but, you know, not all of life is great and we need to share the reality of experiences as well, don’t we? And I think part of the reason of doing this podcast is to open up conversations so that we can talk about the not good stuff too and like you say, raise awareness of things people might not be aware of, particularly disabilities that aren’t visible, all of that. That’s a whole-, there’s a lot of work around that, that we could be doing and people’s personal experiences of things again, might just make someone think, oh gosh, I’ve never thought about that before, I didn’t realise that was something that somebody could experience. And also when I listened to them, I suppose they connect to that human bit of you again.
[00:33:07] – Samantha
So, again, if I can imagine if you-, say you were sharing one of these at a scrutiny board, for example, I can imagine it’s very, quite formal and there’s lots of processes and rules and agendas and set up in a way that it needs to be. But this also helps bring that human element and connect to what it feels like to be a human being and just connect into that a little bit as well, I imagine.
[00:33:34] – Joanne
And to allow people to resonate and relate to them as well. Yeah, I think sometimes poetry does come across as being quite sad, but-, and actually I think it makes you think about it. And sometimes your initial thought might not be the thought you have ten minutes later or upon the second reading of it. It’s something that really makes you sit and think and reflect on what is this person saying to me and what are they living through in a way that my words, my interpretation of their words wouldn’t. So I think poetry and music can be quite an impactful way of communicating how you’re feeling.
[00:34:10] – Samantha
And now, here are the two poems. Our deepest gratitude to the people who created them for allowing them to be included in this episode. A heads up that they share personal experiences of pain and of end of life care. If you feel that listening to them might not be beneficial for you, you may want to skip the next five minutes of this episode.
[00:34:30] – Poem One
Behind this face, behind this smile. This person who is me. My feelings I don’t want to show for all the world to see. The hurt, the anguish and the pain go somewhere that’s unknown and only me, my heart, my soul is me, myself alone. I am in pain. The agony, the world, it does not see. But deep inside, this agony is happening to me. This face, this smile, hides everything that only I can feel. Yes, you. Yes, you. You people out there. This pain is happening to me.
[00:35:44] – Poem Two
I’m still here. It’s quiet in this room. I think this is where I have to stay now, but I’m not sure why. I long for home, wherever that is. I can’t remember. I think there’s a knock at the door.
[00:36:01] – Poem Two
Hello, Mary, how are you? It’s Julie and Rachel. We’re looking after you today.
[00:36:09] – Poem Two
I can’t hear properly and I don’t remember them. But Julie looks at me with kind eyes and she takes that strange thing off her face so I can see her smile, her words. Rachel takes my hand gently and says something. You what, I say, where do you live? She comes closer to my ear and asks, is it okay if I change your nightie and wash your face, Mary? I nod. She tells me she lives in Dewsbury. And I say that I used to like going to Dewsbury Market. And she says she still goes there sometimes.
[00:36:52] – Poem Two
I hate being moved. Sometimes I’m scared when the curtains close. Darkness. Something being said, but I can’t hear, can’t see their faces. A light goes on. Blue plastic gloves pushing, pulling, until it’s over. The ladies today don’t make me feel scared. They look at me. They’re as gentle as they can be. They know that my favourite thing to eat is Maltesers and that a couple of these will distract me for a while. They know that a dab of perfume will bring back comforting memories for me. They understand that I haven’t chosen to be like this. I got old.
[00:37:38] – Poem Two
I got ill. I lost the use of my legs. My memories have faded. I get cross and sometimes lash out when I’m frightened. Frightened by the movements in my room. The darkness, the faceless, the mumbles.
Frightened by those who I don’t know, those who don’t pause for a moment, who don’t smile or share a kind word. Because sometimes I’m a task, a job to get done, something to tick off before the end of a shift. But I still feel a gentle touch. I still know when someone’s eyes are smiling. I still love to smell lavender, I still have a sweet tooth and I still respond to kind words. I’m still here.
[00:38:57] – Samantha
So, just to finish off, it would be great to know about-, if anybody is sort of listening to this and thinking, do you know, I’ve got lived experience of something and actually there’s some things I’d like to talk about or I’d like more information on. What’s the best way, how can they get involved with Healthwatch.
[00:39:15] – Joanne
So people can contact us one on one. They can just come to us and ask a question that might help with their immediate and unique need. So it could be that they are struggling and have been struggling for quite a while with online services and how-, and they’re not getting the answers they need, so we can help them one on one. If they feel that their experience is perhaps more widely known or widely experienced but unheard, they can come to us and share that with us.
[00:39:45] – Joanne
It might be that we have heard it, but we haven’t heard it enough. So we can sort of collate it together with everybody else and say, okay, should we be looking at this in more depth and working with people in more depth? Or they can contact us and ask us to come along and speak about Healthwatch, to come along and just hear their general reviews of services, general reviews and experiences. And everything we do, we sort of record it on our systems anonymously and it all gets shared with the NHS regardless of whether it’s just a one off or a more widely common kind of thing. So people can get in touch with us and we’ll help you if we can, or we’ll look more in depth and help people that way.
[00:40:26] – Joanne
We can go along to any sessions that you’re organising, any activity days, any coffee mornings. We love a coffee morning with cake and we aim to get out and about and just really meet people and help people that way. And so, yes, it’s just get in touch, share your experience and it might be that we’ve had that experience before and we’ll do something with it.
[00:40:46] – Samantha
Great. What we’ll do is we’ll make sure there’s links on the website page, the show notes for this episode so that people can find you that way if they need to. You’re on social media and everything as well, I think, aren’t you?
[00:40:58] – Joanne
[00:40:59] – Samantha
[00:41:00] – Joanne
So, coming up, we are doing the next phase of our Never Heard. We’ve actually all been asked to feedback on who we think we should be going out speaking to and the list is extensive. So it ranges from going out speaking to men who are often not that good at or not as good as sharing their experience, to speaking to people who are perhaps living on the streets. A few weeks back, myself and Alexandra, one of my colleagues, we took packs out to people that were sort of living on the streets or they don’t have as much as everybody else. And that was a great experience, actually. They were all really positive. They welcomed the packs that had socks and gloves and energy bars and that sort of thing in. So we might target some work around there. So we’re really looking at who we don’t hear from and who we need to hear from. And people listening can help shape that. They might feel that they’ve not been heard and they can get in touch with us and ask to be part of this project as well.
[00:41:52] – Samantha
Wonderful. And that’s the Never Heard project, isn’t it? That’s what it’s called.
[00:41:55] – Joanne
[00:41:57] – Samantha
Great. Well, thank you so much, Joanne. It’s been really nice to hear more about Healthwatch and particularly the depth of people’s stories and the impact that they make because it’s really powerful, isn’t it?
[00:42:10] – Joanne
It is, yeah. It can be powerful and it can be positive.
[00:42:14] – Samantha
Definitely, definitely. Well, thank you so much for taking the time. It’s been great to chat to you.
[00:42:18] – Joanne
[00:42:20] – Samantha
And that brings us to the end of another captivating episode of Calder Navigation. Thank you for joining us on this voyage through the stories that shape Calderdale. We hope that these conversations have touched your heart, inspired your mind and reminded you of the power of human connection. As we navigate life together, let’s carry these stories with us, cherishing the lessons they teach us and the bonds they strengthen.
[00:42:42] – Samantha
Remember, Calder Navigation is just one part of the Welland Activator Project, a collective effort to combat loneliness and isolation in our community. We encourage you to explore the various classes, workshops and walks offered through the program and join us at our special showcase event, Welland, where we can come together and celebrate the magic of Elland and Calderdale. You can find out more about the project at curiousmotion.org.uk.
[00:43:09] – Samantha
We would like to express our deepest gratitude to Calderdale Council, Reaching Communities from the National Lottery Community Fund and Arts Council England for their invaluable support in making this podcast and the Welland Activator possible. Thanks to Untold Creative for production support. If you haven’t already, be sure to subscribe to Cold Navigation on your preferred podcast platform so you never miss an episode. And please help us spread the word by sharing the podcast with your friends, family and anyone who might find solace, inspiration or a sense of belonging in these stories.
[00:43:42] – Samantha
As we conclude this chapter, we invite you to keep exploring, keep connecting, and keep navigating the currents of life with curiosity and compassion. Remember, the journey continues and together we can make a difference. Until next time, fair winds and warm hearts.
Resource Centre, Hall Street, Halifax. HX1 5AY
Curious Motion is a not for profit organisation that relies on public funding and the support of our community to provide our projects. All of our activities are offered on a free or ‘pay what you can’ basis. Thank you to everyone who supports us.