Carer Catalysts

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Hello and welcome to Carer Catalysts.
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A podcast that connects innovators for unpaid carers.
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I'm Suzanne Co-founder and Head of Carer Support at Mobilise.
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I'm also caring for my husband, Matt, who has young onset Parkinson's.
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And I'm James CEO and Co-founder of Mobilise.
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But perhaps more importantly, I'm son to my mum, who has MS and at Mobilise we believe that with innovation, technology and a bold vision, we can help carers to thrive.
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And we're bringing the same energy to this podcast hearing from inspiring leaders in adult social care from across the country listening to their stories about making transformational change for unpaid carers.
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So sit back, grab a cup of tea and join us for Carer Catalysts brought to you by Mobilise.
0:49
So welcome, everyone.
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And thanks for taking some time out of your day to join us for this Carer Catalyst podcast.
0:57
And it's really great to be together doing this podcast, James.
1:00
Now you got to talk to our latest interviewee, Debbie Hustings.
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Many people will know Debbie, but just in case people don't who is she?
1:09
Yeah, you're absolutely right.
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I mean, it.
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It does.
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It does feel like talking to a celebrity in, a very niche form of celebrity in the world of carer support.
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But Debbie is a total legend.
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So she's currently the lead in London for the NHS England's unpaid carers team.
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She’s holding that position with 17 years of experience as carers lead in Surrey for what is now the ICS Surrey Heartlands.
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So it brings, you know, a huge amount of expertise around how to make things happen.
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How to make change happen particularly, but also, you know, looking at the other dimensions of unpaid carer support that have happened over the last 20 odd years.
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So I've already had the chance to listen to the interview and for me, it really clarified why Debbie is such an influential innovator for carers.
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So she's got her own lived experience of caring in a variety of circumstances, a passion for unpaid carers, having a more positive experience, and she's got this fantastic network of people who share that passion.
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People know that working on something with Debbie is always going to be truly impactful.
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So it's a good use of their time.
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And what a great platform from which to build innovation.
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Yeah, totally.
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Well, let's get on with it.
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I sat down with Debbie just the other day.
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Have a listen. Debbie.
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It's such a treat to have some time with you.
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You're a very special person in the world of carers, generally, but also an important piece of trivia here.
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There are only two people in the world who are allowed to call me Jimmy.
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And, one of them is my mother, and you are the other.
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It's a very special treat to be with you.
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Thank you for making time to join the Carer Catalyst podcast.
2:58
Thank you very much for having me, James.
3:02
Debbie, ever since I got involved in the world of unpaid carer support, you've been a really central figure.
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And what really comes across in your work is that passion for doing things for unpaid carers.
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Where does that passion come from?
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For you?
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Oh, gosh, James, that takes me back.
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I'm actually a carer myself and
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I came into caring.
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Like many carers by sort of default.
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I had no idea what I did was called being a carer.
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And , to be honest, nobody under the professionals I worked with at that time had any idea what I was doing or or what I was trying to do.
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All I knew is that one of my family had a need and II I needed to be there to support them through that very, very difficult time.
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So, this was, of course, back in the eighties, and we have seen such huge changes at the time I was working, managing a voluntary sector organisation.
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But I I took the well, the rather large step, to move into the world of the statutory sector provider, a poacher turned gamekeeper, or so it was described at the time.
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It was there that I was afforded the opportunity first in social care to start working around carers, but also then, , probably in the early noughties and to move into the health arena.
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Where again, there was just so much need, that I felt my skills would be better utilised in that space James.
4:44
So you mentioned that you've spotted some differences between the sectors there and the progress that has been made since the eighties.
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What would be the highlights for you in seeing that progress and the differences between the sectors?
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Yes.
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I mean, I think there are so many milestones that I can cite, and it's been a real privilege to be working in this space for so long because I think in the moment it can be quite hard for carers to see that progress.
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But back in the eighties, there wasn't. There were virtually no rights, no awareness.
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Certainly Nobody knew how to support me.
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And over those years, we've seen national carers strategies being formulated, specific funding targeted at supporting carers.
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And, of course, we've seen fantastic progress in legislative rights and policy, culminating most recently in the Health and Care Act, which, of course, creates new duties around carers.
5:51
So, I really have to mark and step the changes over my career.
5:57
Although, of course, I do appreciate there's still a huge amount to do, and it's really interesting that you get that opportunity to see the progress over a career, whereas it so often a caring role goes on for a couple of years, but not necessarily that long.
6:15
So it's harder to see the progress.
6:19
What keeps your motivation going, given the rate of progress can often be so slow.
6:26
Yes, and there is a lot of unwarranted variation, isn't there, James?
6:30
So I think for me
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There's a number of things I've had a number of caring roles.
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I mean, during the last 30 years, I've cared for five members of my family, most recently my mother.
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I cared for her end of life in lockdown and and and the very difference between caring for my mother, , in lockdown as compared to my father in the nineties was so marked.
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my mother was discharged from hospital into my care.
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But before she was discharged, I had contact with 12 different services.
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Who were all there to support me and wrap around that support for me.
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So I could care for my mom at home, and she had a good death.
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Which I couldn't say.
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My father had, he ended up being blue lighted in an ambulance on the day of his death.
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So I can really mark the changes and I.
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I always say, James, that my work will be done the day that, someone in the NHS says to me, “Oh, Debbie, that thing you do is what we call being a carer, and there are rights and services.”
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And that actually happened to me
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I actually thought when, you know, penetrating that culture and those fixed behaviours in health, it was such an occasion for me.
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Just on a both on a professional life.
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But so it also demonstrated, you know, on a personal level, what an impact that has.
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Because, you know, carers are more likely to have an interface with health than they are with social care.
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And unless we get it right in health, we can't really provide that seamless transition through into social care and other services to support them.
8:22
So our duty is really in the NHS to do everything we can to empower our staff to have those conversations and be really proactive at identifying carers, whether they want the title or not well, and so that's a whole question that we'll come on to in a moment.
8:43
I just something you say there once makes me want to step outside of the interviewer role because, and it's that piece about variation and that idea that sometimes we see we can do it.
8:57
I used to be in education, and the big challenge in education is whether you can get kids from really disadvantaged backgrounds to get fantastic educational achievement.
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And so often there's a sort of myth that it's somehow impossible to do that.
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And there's one outfit, King Solomon Academy, who just throw everything they've got at some kids from really, really tough backgrounds and they get amazing results.
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And I think it's really important to hold up those case studies because, yeah, we have not sorted this out for everybody yet.
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It is the kind of experience as a carer that you just described.
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Is somebody coming up and saying, , you know, there is a word for what you're doing is not true in every hospital yet, but it does happen, and it shows that you can.
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If we get this right, we can make it work.
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And for me, that's a really motivating element of the work that we're doing.
9:56
Debbie, you mentioned just a moment ago the 12 different services that approached you when you taking on responsibilities for your mum.
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And that leads really nicely onto the carers contingency plan that you've been working on because I think this is a really great example of innovation that we can share with listeners to the podcast.
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Can you say a little bit about what that plan is?
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And maybe the journey of how it arrived as well.
10:24
Oh, thank you so much for that opportunity.
10:27
Carer contingency planning is so important, isn't it?
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For all of us who are carers, we want peace of mind, don't we?
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That if we ourselves aren't able to care that there will be someone else who will step in.
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And I've never been entirely convinced by the sort of emergency cards and other apparatus that have been put out there by various very well meaning people to support Carer Contingency Planning.
10:56
I'm not.
10:57
And I I think the links are incredibly tenuous.
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So the analogy James would be if I was walking down the high street and had a heart attack.
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What are the chances that A) I would have my emergency card in my wallet.
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B) that the ambulance crew would find it, C) that they would get a response from the name that I'd put on the back of the card and D) that they would find a paper copy of my plan at home.
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I think it is, it becomes weaker as you go down that list.
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And so I saw in London , an opportunity and I have to say it.
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It's always my motto that it can be done.
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If there's a problem, there is always a solution.
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And as you know, James, I'm not particularly technical.
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But I'm not afraid to put my foot in the water and and and and throw a few ideas out and see if any of them catch.
11:56
And in London, we had something last year that relaunched it.
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Initially it was to coordinate my care, which was a digital record of people's advanced care plans.
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And they then created that into an urgent care plan.
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And this year it's evolved yet again into something called a universal care plan.
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So it basically adopts those principles around personalization, which is so important to me.
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None of that clinical talk.
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You know, it really drills down.
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And so we put in a bid.
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It wasn't for money.
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It was just to offer up a proposal that, as part of the future involvement of the universal care plan, that carer contingency planning could be hosted this way.
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And we were delighted when they came back and said yes.
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So we had to scramble.
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We had to create a task group., to make sure that we reflected all the different users as well as the carers expectation.
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And we were tasked with standardising the carers data set that would fit into a template on the universal care plan.
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And we're on that journey now.
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In fact, we're having a forum at the end of this month to go and check and confirm with our carers or, , that, you know they're happy with the progress we have made on these data sets.
13:36
And here's the thing, James, This plan, it's the scale of it.
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So everyone in London at some point will be invited to have a universal care plan.
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At the moment, they have 55,000 of these things.
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So the scale and the spread is fantastic for us.
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We've never managed to break into something quite as exciting as this.
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And here's the other thing.
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These plans will be coded so that they become alerts right up front.
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They'll surface on the universal care plan.
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So that should an urgent care practitioner be the one trying to resuscitate you on the High Street?
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That information will ping right up in front of them, and they'll know that there's someone at potentially at home who will need support, which I as a carer, , just think is marvellous, because at the moment I don't get any peace of mind in the the the apparatus that is around me.
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This will not only link to providing the urgent care team a number to ring and contact.
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But it will also provide details of that person's care needs.
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So it's a very exciting moment, and the potential is huge because from September, the London Universal care plan is going to be transferred onto the NHS app.
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Now, I know as a carer, we use our apps all the time, don't we?
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And the ability to have proxy rights to edit my carer contingency plan on my NHS app.
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Seems to me just just a thing of beauty, James, I think that I'm controlling that data and that I can update it as I require.
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So I keep it.
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I keep that efficacy of that emergency plan right at my fingertips.
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And I think this will break through that glass ceiling for carers in London.
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And hopefully, in the fullness of time will be available nationally to other carers up and down the country.
15:55
So I mean, first up, Debbie, congratulations on getting it this far, because it's clearly got so much potential.
16:03
But even the progress that you've made today is huge.
16:09
And I just want to drill into that because, so often, when we're looking at innovations, there are sort of nonsensical things that we feel like we're banging our head against a wall, thinking, Come on, this this should be so obvious and and what you've just described sort of sort of sounds kind of obvious.
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But those of us who are trying to make innovations happen know that things get in the way there.
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So I just want to drill down into, some of the ways that you have made that happen.
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And I, I wonder if you could say what you think has been the key to making that happen.
16:46
And crucially, Debbie, you've mentioned the word scale already.
16:49
How are you making it happen?
16:51
Across boundaries and in different areas at that kind of scale?
16:56
Mm.
16:56
Well, I absolutely believe James is sort of a strategic partnership working.
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I think throughout my career the best results I've ever had for carers have been when I've pulled down the wall, pulled down the barriers and, , gone and to talk with people who perhaps, , may be considered, , the other side of the fence.
17:18
And I think bringing together people with a common cause if you can coalesce around a common cause seems to be such a great cause, and you can persuade people that you know of the right of that cause I think is so important.
17:38
So I think for us in the NHS, we've been missing a trick for years.
17:44
I think, in sort of supporting carers, we've actually created more work for ourselves.
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And I and I actually think that by a very small investment of time and effort and willingness to partner up, we can actually, , bridge those boundaries.
18:02
Car carers should be able to travel seamlessly through all our services and carer.
18:07
Contingency planning is an example of that.
18:10
So the duty for emergencies rests actually, with the local authority, but it won't be the local authority driving the ambulance.
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So we've got to work together.
18:20
It's a pragmatic approach.
18:22
And I, I would say one other thing.
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James is, , I think the building of relationships and building of trust is hugely important, and, , and I think that can take time.
18:34
But I think it's best achieved when focus is on the positive.
18:41
I've spent many years hearing people tell me why I can't do things, and actually it's almost a trigger for me.
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Now when people tell me I can't I'm quite determined, and
18:58
I draw a salary, James and and for me, I, I have a real need to justify that salary to the caring population.
19:10
And it's not for me to tell them it's too hard to do.
19:14
It's for me to find those solutions, and sometimes we don't succeed.
19:19
But actually we always learn something from those failed attempts and eventually we get to a point like we are now with the carer contingency planning that actually feels like we have broken through the glass ceiling.
19:32
So it's a win for our carers and that's all that matters.
19:37
Yeah, there's something so important about keeping carers at front of mind there and and knowing that ultimately, you know, we we we're acting on their behalf in so many ways and and you really emphasise that and and it it's it's something that I see from you.
19:53
Sorry, I'm not trying not trying to embarrass you here, but I, I think it's really exciting to see the way you work, which is to bring people together around that common challenge, and to share, share what they're learning, how do you do that?
20:11
Because people have such a lot of pressure on their time.
20:17
And as you said, building relationships can be really time intensive.
20:21
What is it that you use as a hook to bring people in to join your movement, the force that's gonna make a difference.
20:35
It's a really great question.
20:37
And it's something that I've had to learn over a number of years, partly through some very humble of experiences of not getting it right.
20:46
But I think actually, you know, passion is one thing, and it and it will take you a long way.
20:53
, but I think the thing to be able to do is to always tailor your message for the audience that is receiving it.
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So it's no good talking to local authorities about bed capacity.
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In terms of pitching for their involvement, you need to talk.
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You need to tailor the conversation in a way that's meaningful to them in the same way as if you're talking to health professionals or or voluntary sector professionals, you have to pitch it around.
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How this will make a difference to them, and that actually, you know, together we're all part of an integrated system that requires us to actually cooperate and work with each other.
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That's actually our duty to do that.
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But recognising that, we'll all have a different benefit to take home.
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There's something really powerful there about recognising that this is what we should be doing. There's a legal duty for this or a statutory responsibility for that.
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But ultimately, all institutions are run by people.
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And, I guess when you're describing that tailoring, understanding that someone else has priorities, there might not be the same priorities as you.
22:17
So just kind of matching up and aligning and linking into that is really powerful.
22:23
Yeah, I think it is the framing it it it's so important.
22:27
You can't expect to go in with a cold cell with a blanket offer. You have to tailor it to what matters to them and their own corporate priorities.
22:40
You said earlier, Debbie, that you hadn't been applying for lots of money for this carers contingency work.
22:47
But innovation is expensive.
22:50
It takes time.
22:51
You need to take a risk.
22:52
So, you know, normally you need to wait for a grant opportunity or something like that.
22:58
But you haven't done this here. Is funding important for innovation?
23:02
Yeah.
23:02
I mean, I think I think often we're driven by what funds and resources are becoming available, and we end up trying to match what we want to do or strategic priority that we have.
23:18
Against what the funding is available increasingly, James.
23:22
I'm thinking it's almost better to have those discussions.
23:27
Before, we look for funding and then try and match the funding against that.
23:35
So, for us harnessing the power of digital technology and bringing big data sets together seems , there is something which for many people, conceptually, they find very difficult to manage who's going to bid for this money?
23:58
Who's going to own it when it has an Intersect with all kinds of different partners.
24:03
Who’s going to who?
24:05
Who's going to host it and play it?
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I actually think in this particular case, the cost has been negligible.
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In that sense, it's been bringing together people with expertise who all have a part to play in the development of that plan, keeping carers at the centre of it.
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So they're they're feeling, that we're we're listening to what they want and and how they want it to play out.
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So we keep that road map always at the front of our minds.
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And then and then, you know, if you need funding, then look out for potentially where that funding might sit.
24:44
But I get a sense in, you know, well, on occasions that a lot of this can become a tussle and a hierarchy, and I'm not interested in hierarchy.
24:57
If we get the right results, I don't mind where it sits, whether it's in health, social care or the voluntary sector, or private business.
25:07
If we get the right results, that's then in the outcomes, that's what we should be aiming for.
25:12
Thank you, Debbie.
25:14
I know that will resonate with people around the country who are sometimes struggling with that funding, challenge and you know, really seeing it as well.
25:25
What is the thing that's gonna make the difference, and then retrospectively, how do we fit that into whatever funding opportunities come up?
25:32
Rather than trying to hang things on to, different funding calls as they come in and Debbie, I guess, my last big question for you is around ambition.
25:43
Because what you're doing in London is a huge shift, even though, as you say, you know, it's not requiring huge amounts of funding.
25:51
It's a big step forward, but not not all of us can be taking those great big steps all the way.
25:59
And when we're trying to innovate, would you dream of taking those big steps, those big, chunky leaps forward?
26:08
Or should we be saying right?
26:10
Well, we are where we are.
26:11
What are the small, incremental steps that will get us through to the next stage?
26:16
No.
26:17
Well, what a great question.
26:18
And especially today on the NHS 75th birthday. Because for me the biggest changes we can make are in our cultures and behaviours, and that doesn't cost money.
26:30
But a lot of that is just very simple changes.
26:35
So I'm with you, James.
26:37
I think small steps can be the way forward, and that is and you can build on small steps.
26:44
So the work that we've done in London on carer contingency planning has been the basis of years of work.
26:52
So, I don't want people to think that it just arrived out of the blue.
26:56
It had a very solid base in work that was done elsewhere.
27:01
But, I honestly believe that, on our 75th birthday, what we need to do is focus on raising awareness around carers in the NHS.
27:14
And ensure that those that are underrepresented, in our services, are really given the opportunity to to access the support that's available because we know when that support is available, it's life changing.
27:31
And what does it cost to have a smile?
27:34
What does it cost to say to a carer?
27:37
How are you doing it?
27:39
It doesn't cost anything.
27:40
I've just seen that happen with a case worker in one of the hospitals in London, and it's very powerful that question.
27:49
So it doesn't have to be a big, sparkly project like our universal care planning, contingency care planning.
27:58
It can just be a simple reaching across that human divide.
28:03
Well, what a powerful note to end on.
28:05
Debbie, thanks so much for sharing your thoughts on innovation that you've been part of implementing over your career.
28:14
And, Debbie, what comes next?
28:18
For you and for the carers contingency plan work.
28:22
Well, I think at the moment we're really at a tipping point, James.
28:26
So the NHS long term plan, it's had its first five years, and we now need to take stock of what's been achieved, and we need to think very carefully of what our next steps are and what our approaches are.
28:40
So where things have worked really well, how can we build on those?
28:44
But also, how can we ensure that wherever a carer is up anywhere in the country that have their rights?
28:52
And the support is there, that for me is the next big, big hurdle.
29:01
Well, I know you'll have common cause with many of our colleagues and listeners around the country.
29:06
Debbie, Thanks so much.
29:07
Really great to hear from you.
29:09
It's a pleasure, James and my very best wishes to all the team at Mobilise.
29:14
Thank you.
29:15
So Debbie really dispelled some of the myths about innovating for carers, that things are impossible or too hard, that we require a specific funding pot or that this is a social care problem.
29:27
She really recognised that colleagues in health are more likely to have those first interactions with carers.
29:32
I think that's really key.
29:34
And she's been incredibly smart to see an opportunity to align the carers contingency planning with this newly emerging universal care plan.
29:43
And she was so well positioned and connected to be able to move quickly.
29:47
I really love that joined up thinking, and it seems like it's a really scalable opportunity.
29:53
Yeah, absolutely.
29:54
I was so pleased that she could use that example because it has all the hallmarks of success so far.
30:00
But also, you can kind of see where it could go in the future.
30:03
And actually, there was one of the things that I think is really important Is that health foundation research about how local authorities and health bodies are actually reaching different groups of carers when you map it across.
30:21
There isn't much of an overlap between those two groups.
30:24
So what?
30:25
That, what I can do by using Debbie's innovation you can reach a much broader number of people just just by linking things up under the bonnet in, you know, behind the scenes.
30:39
And that's really, really, really powerful.
30:41
Yeah, it really is.
30:42
And yeah, and great to see how that links with the latest research, too.
30:46
And right there at the heart of Debbie's innovative work, because it's not just, you know, the piece that she gave as an example.
30:52
There's lots of other projects she's involved in and working on and supporting.
30:56
But right at the heart of her work is those strategic partnerships she's able to build and leverage.
31:03
She's built trust over time, and what I really love about her is that she said that really deliberate approach to focus on the positive.
31:11
I think that really shines through, and that's what makes stuff happen.
31:15
That's a bit of Debbie's secret sauce, I think.
31:17
Yeah, I totally and you really get the sense that, , she's talking to you as a person and , yeah, it's such a theme.
31:26
, here in the social care sector, it feels a lot like institutions, organisations making decisions.
31:33
And of course, actually, it's people in organisations making decisions.
31:38
So by building that personal relationship, I think she has, you know, a really great opportunity to to make a difference.
31:45
And of course, you know, building personal relationships that doesn't cost money, or need a particularly sophisticated set of opportunities.
31:57
It's often just picking up the phone.
31:58
And instead of dropping an email, picking up the phone and having a chat with people, you can really have that sort of infectious sense of sharing a problem and that optimism that something can be done.
32:10
So yeah, it's really powerful there.
32:13
Yeah, and I just love all these conversations we're having, I think it's just so great to be at the heart of these things and hearing what's going on gives me so much hope for the future that things are changing and innovation will kind of really have an impact.
32:26
So thanks, guys.
32:27
Thanks to everyone that's joined us, I hope you found it as interesting as I did.
32:30
And yeah, we're looking forward to doing more of it.
32:32
Thanks a lot, guys.
32:34
Thanks for joining us with carer.
32:35
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