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SoWhoCaresAnyway E 33 Speak for Me · SoWhoCaresAnyway

0:04
Hi, I'm Ruth Germaine, and this is, so Who Cares? Anyway, a podcast shaped by my deep curiosity about who cares, what do they care about, what do they do, and why does it matter? My aspiration is to build a community that listens with intention and explores care from every angle from the North Yorkshire malls.
0:25
So behind clinical doors, each episode invites people to share their stories, their ideas, and talk about what matters to them.
0:34
Together we reimagine what care could be and how we might shape health and wellbeing through the assets, values, and the lived wisdom of our communities.
0:44
And why does it matter? Because for too long, health and care have been treated as things to be delivered, often depleting systems and the people around them.
0:54
And it's time to rewrite the narrative to center everyone as a contributor, not just a recipient, to offer joy, hope, and meaningful belonging to invite each of us to shape the future of health and wellbeing with courage, with creativity, and with care.
1:12
So who cares? Anyway, hi.
1:16
It's Ruth here, and today I just want to ask you, what are the most important conversations of your life? Were left too late.
1:24
Well, in this episode, I'm joined by my good friend and previous colleague, Claire Fuller.
1:30
She's a nurse, a palliative care specialist, and the founder of Speak for me.
1:34
Claire and I first worked together setting up primary care training hubs.
1:38
And I've seen firsthand Claire's passion for supporting professionals and the public.
1:43
So today we're talking about advanced care planning, why it matters to everyone, and how's Claire's leadership shows.
1:50
These conversations aren't just about dying.
1:53
They're about living well shaping services and finding your authentic voice.
1:59
So I hope you enjoy.
2:02
We'll just start off by asking you to introduce yourself a bit more please.
2:06
Thank you, Ruth.
2:07
And can I say what a tremendous honor it is to be joining you with your podcast? And it's really fun.
2:11
I'm loving being a guest.
2:13
Um, when we were talking off camera, I said it's great not being in charge.
2:16
So it is lovely being led by you and an honor to be joining you today.
2:21
Yeah, so I've been running my own business for about four years, Ruth, and as you know, we're always talking about our elevator pitch, getting it short and snappy, but I still find it hard to be short and snappy.
2:31
But I'll, I'll try and give you those highlights.
2:33
So, as you mentioned, I'm a nurse and my background is in palliative and end of life care, working across all the spectrums, hospices, and you can dive into any of these, uh, as you feel.
2:44
Could be useful for your listeners.
2:45
So hospice is the acute where I was dragged kicking and screaming because I was that special nurse.
2:51
Don't put me in an acute, but it was in the acute where I realized that so much of palliative, palliative and end of life care.
2:59
Falls to generalist teams and indeed should do so.
3:03
I really developed a passion for supporting generalist teams rather than specialist teams in palliative and end of life care, obviously supporting patients and, and their surrounding families and carers as well.
3:14
Um, I worked for Gold Standards Framework.
3:16
I worked as a CQC inspector or specialist advisor for Palliative and End of Life Care, and Ruth have also looked after somebody.
3:26
So I've, I've been a carer.
3:27
As well, um, for somebody who died at home.
3:30
So with that wealth of experience, um, all the different places that I've worked, I've worked in community hospitals, community teams, you name it, I've done it.
3:39
What was the common theme through all of those? Everything is left too late.
3:44
Planning is left too late.
3:45
Conversations are left too late, and I just thought things could and should be done differently.
3:51
Um, so all of those experiences, and I can expand on any of that if, if you, if you'd like to pick up on any of that, but all of those experiences.
3:59
Led me to start my company speak for me, there was no one defining moment, but it was a cumulative effect of all of that experience.
4:07
Thank you, Claire.
4:07
And that's quite powerful.
4:08
'cause you've talked about lots of things that you've done, different roles where you worked and, and that bit of being in the acute, kicking and screaming, you know? Mm-hmm.
4:16
But actually what you realized when you were there is that, and I'd never really thought about this before Claire, because I've been that generalist, um, on the district in hospital.
4:25
Actually a lot of it is left too.
4:28
To generalists to look mm-hmm.
4:30
Look after people at the end of their life.
4:32
And quite often we will have specialists coming in, but I know that other side that sometimes you feel like, oh, but I'm not equipped, I dunno what to do.
4:41
Absolutely.
4:41
I dunno how to manage the situation.
4:44
And the other person isn't available in those days, it was just on the end of the phone.
4:47
Mm-hmm.
4:47
Um, and sometimes a house phone even so the other person wasn't available.
4:52
And how did you get hold of them? When I was out in the community or in hospital, there wasn't always that.
4:57
Expertise and I wasn't the only one feeling like that.
4:59
No.
5:00
So depending on the structure and the teams you had around you, and if you happen to have somebody working with you that you really knew, sorry, I'm talking a lot today, Claire.
5:08
Um, but that you really knew that you'd think, oh.
5:11
They already had a lot of, um, expertise then they'd be drawn upon.
5:16
But of course there had to be a shift and they had to be there.
5:19
So yeah.
5:20
You picked up quite a lot.
5:21
And then you talked about the fact of that you yourself have been a carer and so you've been that other side.
5:27
Absolutely.
5:27
And then how you came to the fact that not only is it happening generalist situations, so mm-hmm.
5:33
You know, hospital community, people without that specialist knowledge, but also that the conversations and everything's left.
5:40
It's too late so.
5:43
It seems to me that w basically you said that was your drive to think, well, let me set up on my own, um, and do this.
5:50
So I wonder if you wanna tell me a little bit about what you've been doing and, and how that's helped to shape perhaps a bit deeper in, because probably there's a lot more to this to unpack.
6:00
So how that's helped to shape that all.
6:01
Please.
6:02
Um, before I do, Ruth, can I go backwards in our conversation? Just 'cause I think there's something really.
6:07
Interesting for, for your listeners as well.
6:09
Um, and, and just to stay with that generalist theme, if I may.
6:12
So I'm gonna go backwards before I go forwards, if that's all right.
6:15
And, um, I, I, I think that's part of the problem as well, because we always think it's somebody else's job to have these conversations, to think about advanced care planning and.
6:25
To care for people who may be in en at end of life.
6:28
And just to remember that end of life is sometimes years of a person's life.
6:32
And you know, we, me and you have been on on reviews of incidents as well, and nine times out of 10 it's around communication and not recognition.
6:43
And just a really interesting fact that around about 30, 30 odd percent of anybody in an acute hospital at any one time will be what we would call.
6:53
For end of life care in that last year of life.
6:55
So this really is everybody's business that is not just down to the, the tiny percentage of people that will be in a hospital hospice, or the tiny percentage of people that are specialists.
7:04
So my, my message is really, this is for everybody and advanced care planning, that element within somebody's journey is for all of us, Ruth, it's all of our responsibilities, not that specialist responsibility.
7:16
So that was my backward step that I was, I think it's worth scene setting with how many people are in that last.
7:22
Last year of life, and of course raw mortal, you know, you, you and I share that.
7:28
Um, diagnosis, if I can say you and I share that diagnosis of mortality, this, this, whether you're a healthcare professional or a member of the public, these conversations, advanced care planning matters to us all.
7:39
So that was my backward step and a really important one.
7:42
So thank you for that.
7:43
Um, and it is something that I hadn't sort of really thought about.
7:47
So yeah, for me, thank you for just re Yeah.
7:50
Reiterating that, you know, end of life people do think it's, it's something.
7:55
Somebody specialist has to do.
7:56
And maybe that's why I used to feel like I was failing.
7:58
'cause I felt like it needed to be a specialist.
8:01
But actually it doesn't need to.
8:02
Yeah, it doesn't.
8:03
Thank you.
8:03
So I think that's a, a really great message, and you asked me the steps that I, I took, so starting up a business, and it'd be interesting to reflect with you, Ruth, on how your business has grown as well.
8:14
But it's, it's a big step to do.
8:15
So at first I started off, um.
8:20
Developing the, um, lasting power of attorney consultancy.
8:24
Um, I did that because I'd had so many conversations in hospitals with families.
8:30
Um, if I, if I would be a wealthy woman, if I had a pound for every time somebody said we were gonna do an LPA, we meant to do an LPA, we spoke about an LPA and people just didn't.
8:41
Um, and that impacted the care that then happened to their families.
8:45
They were, um.
8:47
That, that there was that regret, that missed opportunity.
8:50
Um, I realized that people didn't do LPAs lasting powers of attorney because they didn't know how to do it or they couldn't afford to do it.
8:58
So I developed a, a sort of middle road of, um, supporting people and becoming a lasting power of attorney, um, consultant.
9:05
And I started doing that in parallel with my, um.
9:09
With my, my work for, for a large community healthcare trust.
9:13
Um, I then gained the confidence to become completely independent and the business has really grown in organically, I would say from then.
9:23
And it's gonna be really hard to list what I've done, so I'm gonna do it in chunks and you stop me if I start going off on, on wrong tangents.
9:30
Um, so my broad elevator pitch, if you, if, if you like, would be to, um, improve professional education.
9:37
Raise public awareness and normalize conversations about planning ahead.
9:41
So if that's my top line, if you like, what I have developed through that, our blogs, our podcasts, our support with people in advanced care planning is a wide ranging career in, um, education, providing education for teams, for members of the public, for healthcare trusts.
10:01
Um.
10:02
Incredibly proud to have developed the first UK National Advanced Care Plan Day with my colleagues Danny and James.
10:11
Um, that's Danny and James Norris and being independent and we, we can reflect on this.
10:16
So, um, the NHS can be a great and supportive organization, but it can also be hierarchical and being outside of the NHS enables you to develop in ways that you potentially couldn't within the NHS.
10:30
To have sometimes more of a voice.
10:32
Yes.
10:32
And reflect your own wishes.
10:34
Yeah, I do that, call that beyond the NHS actually.
10:39
So I've really found that since.
10:41
So yeah, I would absolutely agree with you, Claire, that you know, it can be quite liberating, can't it? To work outside of the NHS in what you're, liberating is a great word.
10:50
Yeah.
10:50
And what you're afforded to be able to do.
10:52
It's great to be able to say, especially, I mean, we may or may not go on to talk about this, but especially in the current.
10:58
Climate with the change that potentially happening legally as well.
11:02
It's great to be able to hold your own views and say, this is me.
11:05
This is what I believe in.
11:07
This is what I'm doing.
11:08
This, this is my voice.
11:09
This is my authentic voice.
11:12
I, I think it, I hope it's also useful for people listening as well, for other nurses listening, Ruth, to see how a, a nursing career can develop and diversify.
11:22
We, we worked a lot with, um, portfolio careers, you and I, with often with GPS and portfolio careers, and I think it's less common for.
11:30
Nurses to have portfolio careers.
11:33
Yeah.
11:33
So I hope it's useful for other nur nurses particularly listening to this thinking, well, actually I could do, I could do something like that.
11:39
Um, it, it also led me to be a parliamentary commissioner as well, which is something I could never have dreamed of.
11:45
So this year I spent, um, quite a few months traveling up and down to the Houses of Parliament.
11:51
Which was a tremendous honor.
11:53
So I, I worked as a parliamentary commissioner for Palliative and End of Life Care.
11:56
And again, that is an opportunity that I could never have imagined when I started my career in nursing at 18.
12:01
So that the role has developed, it's a hard question to answer because it has developed in so many different directions, and I would say every day it develops further.
12:10
Like the book club, I've just started running online, just constantly evolving.
12:15
Yeah, and that's why I particularly wanted you to talk about what you were doing, Claire, because I knew that.
12:20
There's so much and probably a lot of people are thinking, well, we're two nurses talking to each other.
12:25
But actually when you start to listen to that, then you can hear what it is that your clinical expertise is really starting to, um, what you're doing and what that informs as well.
12:36
So I think quite often people don't.
12:38
Don't understand that when we talk about nursing.
12:40
'cause it is as broad as it is long.
12:42
Absolutely.
12:43
To be fair.
12:43
And there's so many things that people can do and need to do to make a difference.
12:48
So I wonder if you want to sort of pick up a little bit.
12:51
There was, I wanna go back actually to your elevator pitch.
12:54
'cause you, I, I like that.
12:55
I'm scribbling here.
12:56
You can see and you are doing the same clear 'cause we both, you know, that's probably how we work, but I, I couldn't write it down quick enough and I just think it was really important actually.
13:03
'cause there were three points to it and I wonder if we could use that as a frame to start to, to talk around if that's okay.
13:11
Um, and I was, I, the first one I managed to scribble down in time, so that was in.
13:16
Improve professional.
13:18
I think it was understanding.
13:19
It's a good idea.
13:20
Actually.
13:20
That's a, a really great way to approach this, Ruth, is to break down those three things.
13:23
'cause that'll enable us to explore and, and yeah.
13:26
Um, sort of dig into them because it, it, it is vast.
13:29
So the first one was improving professional education.
13:33
So that's the first of the elevator pitch if you, if you will.
13:36
Yeah.
13:36
And that's very much going back to the conversation that we had at the beginning.
13:40
And that's to take advance care planning.
13:43
And I'm going to use the word advanced care planning, but I'm mindful that some listeners will be referring it to future care planning.
13:49
Some people will, in different nations, will say future and advanced care planning, and we, we can perhaps come back to that point.
13:56
And that's part of the challenge.
13:59
It is the different terminology.
14:00
Yes.
14:00
And, and understanding what we mean.
14:03
So.
14:04
Improving professional education to focus on that.
14:07
I found that every, everywhere I worked, I've already mentioned that advanced care planning was left too late.
14:14
But the other theme that happened and that I, I observed was that nobody knew what advanced care planning was or to be more precise.
14:24
If we could do a poll for everybody listening to your podcast and get everybody to write in and say, what do you think? What do you believe advanced care planning is? We're gonna get hundreds of different answers because it means something different to everybody.
14:37
So one of the challenges, um, is to define what we mean by advanced care planning.
14:45
So I developed the infographic, and I believe you've seen the house infographic that I've used.
14:50
So this took me.
14:53
Probably a couple of years of thinking to think how do I explain advanced care planning in a way that makes sense to people? I tried knocking as high as I could within the system and for lots of reasons, um, very much a fallout from the Liverpool care pathway back in 2014.
15:12
There is a push away from having anything that is standardized, and I understand and accept those reasons.
15:18
Um.
15:20
I wanted to make it easier for professionals to do advanced care planning, to support people through their illness journeys, so the professional education.
15:30
Is, um, I came up with an infographic.
15:32
Is this a good time to, to share the infographic for advanced care planning? Yes.
15:35
Yeah, I do.
15:36
And we're making sure it's in the show notes along with anything.
15:38
Of course.
15:39
Perfect.
15:40
And, and you can tell me, you can tell me if this makes sense to you.
15:42
So rather than think about how do I do advanced care planning, what form do I use, how do I make it in the area that I work? If you.
15:50
I'd like to invite you to think about advanced care planning as a house.
15:53
And I'm drawing this.
15:54
You can see my hands going and drawing.
15:56
Yes, you can.
15:56
So a house is built on a foundation of what matters most to you.
16:00
So if you do one thing for advanced care planning, if you simply start asking your patients what matters most to you, that is advanced care planning.
16:08
Um, and in so many of the podcasts, this really comes to be when you hear that people want to live as long as possible to see a, maybe a wedding or an event, or people want to live as quality as possible so you don't have to have.
16:20
That potentially debilitating treatment.
16:23
So ask what matters most to you, and that's the start of advanced care planning.
16:27
We can all do that.
16:28
Ruth, I'd let then invite you to think of windows.
16:31
So drawing a very simplistic house and the windows or the elements of advanced care planning are what you do want to happen to you.
16:40
Uh, anybody listening be, you're gonna have people from different areas, different authorities, and that translates into a statement of wishes and preferences.
16:48
It's not a legal document, but that's what it means.
16:53
Advanced care planning is also thinking about what you don't want to happen to you.
16:58
So you may hear somebody say, I don't want that treatment.
17:00
And it's up to all of us to know how do you take that information from somebody and turn that into a plan? Well, that means an advanced decision to refuse treatment.
17:08
So if somebody doesn't want a specific treatment, um, if you want to talk about any of these in detail, we can come back to them.
17:14
But that's an A DRT.
17:16
The next element of advanced care planning is who would speak for you? So that translates into a lasting power of attorney.
17:26
The next element of advanced care planning is, um, thinking about your legacy.
17:30
And that's so much more Ruth than just wills.
17:32
Um, it can be, I know writing letters for a daughter on their wedding day.
17:37
It can be making, um, bead bracelets.
17:39
It, it can be doing, gosh, I remember doing.
17:43
This shows my age.
17:44
I'm afraid this, I remember doing a, um, I think it was fingerprints of a patient shortly before they died at their wish with, um, you know, the ward clerk.
17:52
We used to have ward clerks and in ink pads.
17:54
I do.
17:54
Yes.
17:54
I remember using an ink pad pad to take prints of somebody at their request and their family requests that, that dates me, I'm afraid.
18:02
So legacy is a part of advanced care planning and to bring it up to date, um, that could be your digital legacy.
18:08
You've built a phenomenal website.
18:10
I've built a website, what would happen in the event of our deaths who will be paying for that website.
18:16
So in my will, I've created, my digital assets will and my resource will continue when I die.
18:22
So that's part of my legacy.
18:24
So you'll notice that not.
18:27
In any of those four windows have I yet talked about death and dying? Because this, this is part of adding ahead for us all.
18:33
The last window of EL or element of advanced care planning is, is end of life care, Ruth.
18:39
And that's when we are looking at the last potentially years, months, or days of life.
18:44
And then we are thinking about the very important details.
18:48
Um.
18:50
According to where somebody is in that illness journey.
18:52
Um, potentially talking about, um, CPR status, cardio pulmonary resuscitation, potentially thinking about things like having crisis medications just in case charts in place, um, potential deactivation of ICDs as well.
19:05
So it's a sliding scale, but rather than start everything in the last 48 hours of life.
19:12
We need to be having it earlier and thinking about all of those elements of advanced care planning, does, does that make any sort of sense as a, um, a description of planning ahead? It does, and I'm just gonna sort of say the Mathis, make sure I've understood them.
19:27
But just 'cause I think it might be useful.
19:29
So what I've got here is I've got, 'cause I'm drawing writing rapidly as you can imagine.
19:33
So I've got my four windows based, well, my house based on what matters to me or what matters to you, depending how we're looking at it.
19:40
And then in each of those we've got our wishes and preferences, but also our don'ts.
19:44
Don't want in one window got two separate windows.
19:46
What you do want two separate windows, what you don't want.
19:48
Okay.
19:48
Okay.
19:49
So I'm not sure if I've got the right number of windows then I've got Who would speak for you.
19:54
So who would speak for you? Yep.
19:55
In the case that you can't.
19:57
Then there's legacy and wills.
20:00
So, um, legacy, which isn't just Wills, I should say.
20:02
Yep.
20:03
It's things like, um, letters, you know, as you say.
20:07
Yeah.
20:07
Digital information that you might have those sort of things nowadays, but also sort of making things that you might leave behind.
20:14
Um, and then there is the end of life.
20:18
So actually what were those last days or those, um, would it be last days, weeks that we're talking about, or is that No, upstream.
20:25
It, last month's.
20:26
Months, okay.
20:27
Years, months, days of life.
20:28
Because the, um, GMC definition of end of life care and, and this surprises so many people, is, um, would you be surprised if somebody was to die in the next 12 months? Right.
20:42
It's not imminent death and dying and every mortality meeting you go to and the recent na um, tells us that.
20:52
The dying.
20:52
Dying is generally recognized.
20:54
It's, it's gone up from, I don't, I can't remember, it was something around about 40 odd hours before death dying was recognized.
21:01
It's extended now to, I think it's 52 hours.
21:03
What meaningful planning can we do in the last 52 hours of life? We cannot, we need to upstream and have these plans earlier when we, we can influence the care that people receive.
21:14
Okay? So it's really about bringing in that bit as soon as you can.
21:20
Symptom control from the beginning, presumably, and, and we are talking years here, it might not be 'cause people think end of life that we are talking about weeks or months.
21:29
No, but actually we are talking not even a year, we're talking years.
21:32
It's the fact that we know that this is something that is happening.
21:37
Yeah.
21:37
Um, it's, and that we can prepare for.
21:40
Yeah.
21:41
I mean if you, if you think about any and think about how our demographics are changing, um.
21:46
Society is living longer, but we are living longer with chronic disease.
21:50
So anybody with a chronic disease, anybody with a life limiting disease, um, these are illnesses that we are gonna die from.
21:59
You know, the long-term conditions.
22:01
Think about the, the patients and the people that we were supporting.
22:03
Ruth and the long-term conditions, planning ahead, conversations need to happen, right? From that point and from diagnosis, you can think about parallel planning.
22:15
You can think about the immediate test results and what's happened at today's consultation, but you also need to have a view the, the long view parallel planning.
22:25
So too often we just focus on, on, on the.
22:29
Imminent test results.
22:30
We don't have the broad picture of an illness and we don't support people with that broad picture.
22:36
So if I can, I'd like to describe, um, every illness has a story that you've got expertise.
22:42
I am I right in thinking that you were respiratory, one of your expertise areas? It was diabetes.
22:48
I did a little bit, it was diabetes, failed and, um, no, it's fine.
22:52
And also, um, and heart disease as well.
22:55
So heart disease, right? I'm gonna focus in on heart disease then.
22:57
Yeah.
22:57
So.
22:59
Every illness has a recognizable pattern, so I'll, let's stay with heart disease.
23:04
You'll have seen hundreds of patients through throughout your career, at the beginning, at the middle, and at the end stage of heart disease.
23:12
And you'll recognize, you'll recognize the overall picture or the chapters of the story.
23:18
So I'm not saying that everybody's illness experience is the same, but I'm saying as healthcare professionals, we recognize the story of an illness.
23:25
Like birth, we recognize those stages of birth.
23:27
It's unique to a woman.
23:30
But they're prefer, um, professionally recognizable.
23:33
And it is up to us to share that incredible knowledge that we have, the story of an illness and we can help people understand what the chapters of that illness will look like.
23:43
So whilst you can look at the immediate test results, what's happening in the here and now, you need to be aware of what, where you are in that illness journey and where their illness journey is going to prepare for the next chapters or story.
23:54
So as healthcare professionals, we know the story for every illness.
23:57
And we need to, to be talking in terms of that whole story, not the immediate test results.
24:02
That's a really interesting concept, Claire, and, and it makes complete sense and logic to me.
24:08
Um, and I can apply it to sort of many of the different things that I've, you know, done, but I've never had it said to me like that.
24:14
So sort of seeing this house, but also seeing it as in, um, a story.
24:19
Mm-hmm.
24:19
Yeah.
24:19
That's really helpful.
24:20
It's quite powerful.
24:21
It is.
24:21
It's quite powerful.
24:22
Yes.
24:22
Yeah.
24:23
I'm, I'm also gonna share now 'cause it, it might be.
24:26
Relevant.
24:27
And, and again, it, it helps, um, conceptualize end of life care, death and dying and, and advanced care planning.
24:33
So, um, I'm very happy.
24:35
People have heard me share this, share this publicly before, but come back to that thinking about the house, Ruth, and on a very personal level, I've done so much of that already.
24:46
I've done it.
24:48
So I have written down what matters most to me because if anybody ever has to make decisions in my best interests, I need to leave them some sort of blueprint.
24:58
Um, I've written down what I do want in, in that statement, wishes and preferences.
25:04
I've also written an advanced decision to refuse treatment and A DRT because I know there are certain things that I wouldn't wish to happen.
25:11
To me, so I've done an A DRT, um, thinking of that window of who would speak for, who would speak for me.
25:19
I've done my lasting power of attorney for health and welfare, and I've done my lasting power of attorney for property and finance.
25:24
It takes, um, round about 12 weeks once that goes to the office of the public guardian.
25:30
So a big misconception is people do it, think they can do it when they need it.
25:34
77% of the population think, well, I'll do that LPA when I need it, but when you need it, it's too late to do it.
25:40
So I've done mine, um, and I've also started my legacy.
25:43
I've had, um, discussions.
25:45
I've, I've mentioned that I've done my digital legacy and you know how vain I am.
25:50
I've actually chosen some photos.
25:51
I'm not having my family choose those photos, those, you know, photos I'm talking about.
25:55
I've got a little folder, folder of photos that I want used, so I've got an eye on my legacy as well.
26:00
So all of that, I've got no life limiting illness other than mortality, but I've done all of that advanced care planning, so I hope that.
26:07
Helps put it into context a little.
26:08
It does actually.
26:10
And it makes me realize actually, and I have done, um.
26:14
My, um, oh, have I done my will, done my, have I done my lasting power of attorney? I would've to have looked now.
26:22
I, I don't even know.
26:23
I've done it that long ago.
26:24
Wow.
26:24
And I felt like I could say I, I've done it and now I'm actually questioning, actually, what did I do? So I'm gonna have to dig out my paperwork and I a look, because it was over 10 years ago.
26:33
Um, I think I have, I'm pretty sure that I have Was it enduring power of attorney base? Yeah.
26:38
I believe it was.
26:38
We, we went, we as a solicitor, we'd done it all.
26:41
So I'm pretty sure it may have been an, if it was years and years and years and years ago, about years.
26:46
Yeah.
26:47
Um, we can talk after the podcast.
26:48
Yeah, we, we probably need to have a little look, but actually what you've talked about is so much more detail, so.
26:55
Mm-hmm.
26:55
I'm not gonna choose the pictures because I don't like any pictures of me.
26:59
Anyway, Claire, and, um, we've had this discussion.
27:02
You've, you've had all this happen last night and you've already come on with your makeup on me.
27:06
No, it's, it's not there because I'm not going anywhere.
27:09
So we're two, we're, we're very different, aren't we? But, um.
27:13
But actually they're really important things, aren't they? But that's the fact that we are very different and what matters to us will be totally different as to what it is that we're, we're wanting.
27:23
So there's, there's a lot of things there that I'm thinking, oh, there's, there's discussions to be had and I can see that.
27:29
It sort of helps to frame the discussions that you might have with family and loved ones so that it's slightly different as well.
27:37
This podcast is all about collective voices, so if you're enjoying it, please subscribe and share it across your networks, your friends, your family, your colleagues.
27:46
This way we can amplify the voice, share the stories further, and it will help to keep the podcast going.
27:52
Now back to the conversation.
27:57
Um, so moving on to raising public awareness.
28:00
Thi this is a, uh, hopefully a great discussion.
28:02
'cause the themes, I hope will start interlinking and, and, and weaving together.
28:06
So I, I'd like to move away from thinking that advanced care planning is something that we do unto somebody that is a professionally led, um.
28:20
A healthcare intervention and to really shift it into thinking, yes, it's a professional responsibility, but it's also a public right.
28:27
I would love to have, um, I can't think of a better word than, than activated at the moment.
28:33
And I'm, I'm aware that's, I'm using the word from the waiting room revolution here, but I would love to have activated members of the public that go to consultations, that go to appointments saying, look, um, Ruth, your might, my nurse, let's say Ruth, um, it's great to see you to check in with my heart disease today.
28:50
Uh, as you know, I'm the sort of person that likes to plan ahead.
28:53
Can you help me know what's coming? Can you imagine if we had a society where we went to consultations with that, that level of public engagement, that level of public, um, responsibility and of ownership as well.
29:08
So I think it is up to, it's not a healthcare intervention, it's something that is a, is a public movement as well.
29:13
I would, I would argue, um.
29:16
I'm heavily involved with Deborah.
29:18
I'm just gonna interrupt you there, because that, that is so powerful, Claire, and I think it really fits with, and I was gonna come onto that bit, that you focus on what matters to you and what's important to you, but actually there's a bigger shift and it does go back to that.
29:32
I'm always talking about the do with approach.
29:35
Yes.
29:35
That Adam LI love it talks about, but actually it takes us there and, um, a conversation.
29:41
So it hasn't been released yet, but it'll be released before yours.
29:43
A conversation I had with a gp, um, just last week.
29:48
One of the things he talked about was about different systems around the world, and we were talking about the nuclear system from Alaska, um, which people might not know, but actually they turned their system around by making the public a.
30:03
Owners of their HE healthcare system.
30:05
So that, so if you went to a conversa, a consultation, you as the member of public owns that consultation.
30:12
So you would go in, you'd decide who you needed to see.
30:15
Mm-hmm.
30:15
And then you would ask those questions.
30:17
And if that person then said, actually, I'm not the right person for you.
30:21
They might suggest someone else, but actually you have complete ownership of your health and wellbeing and it.
30:27
Turned their system around.
30:29
So yeah, I really wanted to, to draw that out.
30:33
'cause I think that's absolutely fascinating and important.
30:35
It, it's also interesting, Ruth, a lot of people are frightened of finding out what matters most to a person because they think they won't be able to deliver it.
30:42
And, and there are a couple of things that.
30:46
I would like to shape here and, and, and about getting people to lead what, what, what they want.
30:51
And, um, I can't remember if, if you would've done the communication skills years back.
30:55
We all did advanced comms.
30:57
Um, I did it part as part of my MSC and I remember learning.
31:02
The research told us that if you find out, if, if you'd let a patient speak and find out what matters, I don't think it was cool.
31:07
What matters most then, but if, if you don't have a patient led consultation, that consultation is quicker and more recent research tells us that if you, if you find, if you ask what matters most to a patient, around about 54% of it is easy, doable, and achievable.
31:25
So if anyone's frightened about taking that approach, I'm sorry, I'm going slightly off tangent here, but I think it's relevant if, if somebody is frightened of thinking, oh God, I can't do, if I ask that question, I won't be able to deliver nine times out of 10.
31:36
What matters most to a person is simple, easy, meaningful, and just do it.
31:40
And even if you can't do it, allowing somebody to say what matters most to 'em enables them to feel.
31:45
Validated and heard, and I've gone right off topic, so do forgive me.
31:47
Pull me back to the public.
31:49
Yeah, so, well actually, I think that's a really important thing as well for public to think actually when I'm going to a consultation, then actually it's fine for me to have in my mind what it is, and I think as healthcare.
32:00
Practitioners, whoever it is that they're seeing, most people would be really happy to hear that.
32:06
Yeah.
32:06
It's just that we come in with a different stance so often because that's our training.
32:09
We do.
32:10
So, yeah.
32:10
So we do.
32:11
Yeah.
32:11
I am pulling you back.
32:12
So we, we've spoken about the broad philosophy, why I think it's important and that's, I feel this movement needs to be public led.
32:18
I love that.
32:19
The examples that you, you, um, suggested as well there, Ruth.
32:23
Um, so what does it look like in practice? Um, I do lots of, um.
32:29
Free work to, I make my work publicly accessible, and if anyone looks on my website, I think you can almost read my journey through the website.
32:40
So I provide, um, podcasts and blogs which are freely available to members of the public as well as healthcare professionals.
32:49
Um, I mean.
32:52
You could, we can talk about the podcast, but particularly in this moment in our discussion, Ruth, um, one thing that I did create for members of the Public was, um, a series of seven, seven podcasts, and they were called Dying At Home, what You Need to Know and How to Be Prepared, because I'd had conversations.
33:09
With actually members of my family, with, with friends, with people that just contacted me the same conversation time after time, after time after time about how to support somebody at home.
33:20
So I made that into a discreet series of podcasts of seven two support people.
33:25
Um, one of the most moving calls I had was from a member of somebody in my local village.
33:33
I didn't.
33:34
No, it's somebody I knew remotely.
33:36
Um, their partner was dying.
33:40
They'd come across my website, they'd come across those podcasts and said that series of seven, seven episodes help them support their, their partner at home to die.
33:49
So that's one example of work for the public.
33:51
Um, I provide lots of talks, um.
33:55
For organizations and public organizations.
33:59
Um, and also the Advance Care plan conference that I did with Dan, Danny and James that was very much open to everybody as well.
34:06
So, um, I support the public through all of those different elements of the work that I do.
34:12
I've gotta ask you a question on that now.
34:13
So, with all of those, so you've mentioned dying at home, which is, you know, massive, isn't it, and something in people's minds.
34:21
Either want to or don't want to.
34:23
Mm-hmm.
34:23
Mm-hmm.
34:23
You know, the families have worries, but what are the things that you think that public need to know? That's what I'd like to hear.
34:31
So you don't have to go into depth of all of them, but, but what do, when you are thinking about.
34:37
Public awareness.
34:39
What would the ideal look like? What would our public know and understand? There's two different questions there.
34:45
I'm only gonna tackle the first one and then we can come onto the second.
34:49
And Ruth, you can get me back to a podcast on, on this, on its own.
34:54
'cause it's huge.
34:56
If I was to be, I dunno if this is controversial or not, but I'm gonna put it out there.
35:02
Go on.
35:02
So what I would like people to know.
35:07
I, I'm just, you know, anything, shall I say this? Shall I say this? But I'm gonna go for it and we can, we can think about this.
35:13
What I want people to know is that planning ahead isn't necessarily going to happen.
35:23
You are not necessarily gonna be told how to bring it together.
35:27
You are not necessarily.
35:30
Going to be given the support you need to do the things that you do.
35:34
So I want the public to know that you can be going to consultations for something.
35:39
I'll come back to your cardiac disease, your your heart disease.
35:42
You can be going to consultations, you can be having your medications changed.
35:47
We can talk about the word treatment as well, and you can be facing death within the next.
35:55
Weeks and sometimes even days.
35:56
And no healthcare professional would have a, had that discussion with you.
36:01
That's what I wanted to say, Ruth And I'm, is that controversial? I don't think it's controversial.
36:06
Um, I think it, I think it's quite legitimate and true, and I think it does come from, you know, the fact that professionals need more education, which we've already touched on.
36:20
And I think it's a really important point to say that actually people will, might be getting towards the end of their life, those chapters of the story that you said earlier on as a healthcare professional.
36:30
You've said that to me and I can now see it, but I can look back and, and say, yeah, I didn't always see it as chapters of a story or treat it like a different chapter in a story because I hadn't thought about it in that way.
36:44
Um, and I'm sure there's many other people that haven't.
36:47
So I think yes, it's a really important.
36:50
Thing for people to be aware of.
36:52
I, I'm not doing that with any level of disrespect to any healthcare professional.
36:56
I'm doing that.
36:57
I think as a, as a member of the public, I'm having this discussion with you that, that has come from my heart as a member of my community.
37:05
And seeing that happen time after time, after time after time, and seeing.
37:13
The impact on that, that sudden rush to go home and it's almost rather than an active, positive plan.
37:19
This is what I wish too often, it's, we're tipping you out of hospital 'cause there's nothing more we can do.
37:24
And, and that's completely wrong.
37:26
And plans aren't in place.
37:28
Things aren't in place.
37:30
And whereas somebody may wish to die at home when it's done as a panic give up as opposed to an active decision, it's a completely different experience.
37:39
And I think it does come back to that education that you spoken about earlier on.
37:43
Mm-hmm.
37:44
And that advanced care planning.
37:45
And if, if we haven't got an advanced care plan in place mm-hmm.
37:49
Which is different than a lasting power of attorney, then actually what, um, then there's a good chance that.
37:59
That plan in ahead hasn't happened and isn't happening? No, because we haven't thought about it.
38:04
The person that we're going to see hasn't thought about it.
38:06
No.
38:07
Or perhaps we're not even going to see anybody.
38:08
We've just got everything on repeat prescription and it's all coming home.
38:12
And unless we get a sort of an acute, um, phase that comes up and we go and have a, you know, got chest infection, go and see somebody, then actually we might not even be seeing anybody to even have that.
38:25
You know, next part of the story.
38:27
Seen, you know, people have annual reviews and things, but yeah, we don't always see it, do we? So I think it's important, Claire, and I think it's right.
38:35
I think it's also useful here, and it's relevant to this part of the conversation to talk about terminology and the words that we use with people.
38:44
So the words be used like treatment and withdrawal.
38:48
So.
38:50
I'd be interested to know if you've heard.
38:52
I've certainly heard and, and when I talk to people, teams will talk about stopping treatment.
38:58
Which is not true.
38:59
We are not stopping treatment.
39:00
We may be stopping treatment that is aimed at curing an illness, but we are still providing treatment to treat symptoms.
39:09
Um, we don't withdraw care.
39:10
I have never, ever withdrawn care.
39:12
But how many times have listeners or have you heard people, consultants say to somebody, we withdrawing care? 'cause there's nothing that we can do and we need to be reframing that we're not withdrawing care.
39:22
Whether somebody's giving birth, whether someone's got a broken leg or whether somebody's dying.
39:26
We are providing care, but that care is changing and I, and I think we need to publicly on televisions and as healthcare professionals, we need to be clear and accurate about the language that they use.
39:40
And I, I hope that's relevant in that point.
39:43
And it is.
39:44
One of the incredibly powerful podcasts I did was with a lady called Louisa Nicole, who was a.
39:51
Actually a sister in a hospice and her husband had, um, sarcoma and, and um, I interviewed Louisa and she said how hard it was for them to stop chemotherapy for her husband.
40:03
So they didn't want to continue it, and they had to battle the healthcare system to say, we want quality time to do X, Y, and Z.
40:09
We don't want chemotherapy.
40:11
But even that was hard to do with the healthcare system and it's, it's just really interesting the language we use.
40:16
Yeah, it is.
40:18
And actually I think, although we are talking about what we want people to know, I think this really fits with your first point, that planning ahead might not particularly happen, and actually there might be terminology or it might feel mm-hmm.
40:30
That.
40:31
As professionals, we might not always say things in a way that we understand that other people understand.
40:37
'cause as a professional, when we, when people say we are withdrawing care, we're withdrawing treatment, of course we don't mean we're not gonna do anything else for you.
40:45
No.
40:45
Um.
40:46
That's not the intent, but of on the other side the course that that's exactly how it sounds.
40:52
And I think there is, I'd actually challenge you.
40:53
Sorry, I'm gonna, I'll c you C 'cause I think there are some teams that do view it as, there's nothing more we can do.
40:59
I have certainly heard that there is nothing more we can do.
41:01
Okay.
41:01
And I've heard, I have heard that.
41:03
And had to defend palliative and end of life care.
41:05
'cause it gets such a bad.
41:07
Press, it gets such a bad, and I think professionally as well, people think that we've given up, we've stopped care where there's nothing more we can do.
41:15
So we were referring you to palliative 'cause there's nothing more we can do and, and this week my podcast was with Jared Rubenstein and he talks about, his first video was on this frustration, this feeling that.
41:27
Can, can I call you something other than the palliative care team? 'cause I don't wanna use that word.
41:32
So yeah, I, I would push back and say, actually there is a professional feeling that it's just stopping.
41:36
It's, it's not.
41:37
Um, and I've, I've certainly experienced that throughout my career.
41:40
Actually, I was gonna come onto a point and, uh, this makes it more pertinent because Yeah, you're right.
41:46
People say, I'm stopping care.
41:48
Yeah, but they don't.
41:49
I suppose I was thinking, well they're, they're gonna pass it over to somebody else.
41:52
It's not that they're, yeah.
41:53
Stopping, but actually I get that.
41:54
Yeah.
41:54
Also, it can also be seen as, um, a bit of a failure.
41:57
So that bit about failure, but we don't want you to stop.
42:01
Chemotherapy because there's something else.
42:03
Let's have another go.
42:04
Let's have another go.
42:05
Yeah, yeah, yeah.
42:05
Yeah.
42:05
And I think particularly for doctors because of their oath that they take it, it's inbuilt that they have to keep providing treatment.
42:15
Yes.
42:15
They have to keep providing something.
42:18
It's a really hard thing to them say, we are stopping and you know, is there something.
42:25
It does come back to that, you know, some of my conversations go round and round us that yours probably do Claire.
42:30
But it comes back to that emotional toll, that emotional labor of our work.
42:34
Mm-hmm.
42:34
And if fact you say to somebody, I can't do anything else for you, or we can do some chemotherapy, but you're right, it's only gonna do this much.
42:42
So it's really up to you.
42:44
It's only going to give you.
42:46
X amount of time or make a difference to your symptoms or whatever it is you make that decision can be, is quite a hard thing.
42:53
And it takes a lot of, um, I think it takes more support than we give people time to be supported with as professionals to have that conversation in that way.
43:05
And I think that's why, um, it comes back to that professional education that you're talking about earlier on.
43:12
It.
43:12
It does, and I, I, I, I think death can be seen.
43:16
Particularly in the medical profession as a failure, it can be seen as a failure where it's not in, it's not a failure.
43:23
We're all gonna die.
43:24
It's, we're all, unless you know something, I don't.
43:27
We're all mortal, as we said at the beginning.
43:31
And it isn't a failure.
43:32
It isn't a failure of care, but it's a failure in care when we don't look after a dying person.
43:37
Well, and if we have those cons, if we have those, what matters? Most conversations early.
43:44
Um, I'll, I'll give you a heavily anonymized example of a client that I worked with, um, who said to me that they had chemotherapy, but at no point in their illness had they been told that the chemotherapy wasn't to cure, it was to abate symptoms.
44:00
And they described, um, am I allowed to swear on your podcast, Ruth, or if I gotta spell it out, we can always it out.
44:07
I'll go on, I'll spell it out.
44:09
They said, um.
44:11
I've had an SHIT two years and now they've dropped me.
44:17
What do I do now? Literally that, that was their experience.
44:21
I've had an SHIT two years with treatment, and now there's nothing more they can do.
44:25
That's the sort of person that comes to me.
44:28
Okay.
44:28
Yes.
44:29
Yeah, and that's really interesting actually.
44:32
Do people even know what their treatment is trying to achieve? Yeah, and quite often.
44:37
Absolutely.
44:38
People probably don't.
44:39
Um, we use the word treatment and people think it equates to, to cure.
44:43
Yes.
44:44
Yeah.
44:45
Thank you Claire.
44:46
So I'm really mindful of time and we had one more bit to, to talk about.
44:51
So, so, and I've completely alluded me.
44:54
So I hope you remember your elevator pitch.
44:56
Claire, the last thing was normalized conversations, and I'm sure we can, we can whi through this, we can normalize conversations.
45:02
Come on then.
45:03
Come on then normalize it for me, Claire.
45:04
Normalize it.
45:05
So it is about, um, normalizing conversations.
45:08
So it's about having the conversations around your dinner table.
45:14
It is about, this isn't a professional conversation, it is about picking up on themes.
45:20
I'm loving East Enders at the moment and the character in there.
45:25
Nigel has got young onset dementia and I dunno if you've ever watched East Enders Ruth, but you've got big Burley Phil supporting him.
45:32
So big Burley Phil, the mechanic, and the the hard man has stepping into the role of carer.
45:38
So normalizing conversations about is about things like watching East Ends and saying.
45:43
Oh my God, I hadn't thought of that as Nigel's done as an LPA 'cause he won't be able to do one soon if he's, you know, if he starts forgetting more.
45:50
Um, what, what would I do if I was in the role of a carer? Um, what matters most to me, so normalizing conversations about, is about having those conversations earlier.
46:01
I would make a plea to media to use, um, themes that are relevant.
46:07
Um, we know that things, for example, CPR was misrepresented on on television.
46:13
I would love there to be more accurate representation of CPR on television.
46:18
Um, it's about coming to the advanced care plan conference, but it's all of these things about bringing these conversations, um, and not hiding it almost from primary school onwards.
46:29
As a society, we need to reclaim, and I'm shamelessly talking about Katherine Manix here.
46:34
We need to reclaim discussions around death and dying instead of having it hidden away in hospitals.
46:39
We need to, this is a normal part of our life.
46:42
We need to be ha normalizing these conversations and not hiding away and shying from them.
46:47
You said that really well, Claire.
46:49
You know, it, it is just something that we No, you, you are looking at me, people can't see, looking at me saying, you're not sure though you have, we just need to talk about it.
46:57
And I think there's something about us as a society that actually, because we've got.
47:02
Treatment because we've got NHS, because we have health and social care and all of those things, which in some ways we all depend upon and expect them to look after our health for us.
47:13
Um, and even myself, you know, as a member of the public rather than nurse, I sort of expect them to look after me.
47:18
You know, I'll go along, get my full job.
47:20
Mm-hmm.
47:20
Get my education, whatever else.
47:22
But actually what that also does, it takes that conversation away from us so that we don't have that, um, those conversations that we need to.
47:31
And it takes me back as well.
47:33
That too, I dunno if you listened, but I had a quite, quite an early podcast with, um, a nurse called Harry Banister, who happens to be the boyfriend of my, um, of my, uh, niece.
47:43
And he exactly the same thing at the end that.
47:46
Mm.
47:47
Is that he was saying just normalize those conversations.
47:50
Yeah.
47:50
Talk about them and, and have them down to What photos do you want me to use, Bob? Sorry, it might a bit extreme, but am I gonna regret sharing that? No, but it is all of those things.
48:03
What do you want to happen to your Facebook pages? What do you want to, you know? Mm-hmm.
48:06
What do you want to happen? See that digital bit? What? Mm-hmm.
48:09
You know? Mm-hmm.
48:11
Thinking about what would you like to say to your family in the future and thinking about whether or not you want to do those letters and or having spoken about those and had those conversations.
48:21
So that is something that's quite normal and, and I think if people are, if that's a step too far, just bring it back to what matters most to me.
48:28
So what matters most to me is outside is my home, is my family.
48:33
So I would want treatment and care shaped around those.
48:40
Values that, that's what matters to me.
48:42
And, and you haven't got to know the intimate details of a list, but just knowing that fundamental, my home, my cats, you saw the cat on my lap at the beginning, brings me comfort and my family and being outside there that that's what.
48:58
Makes me, me, those relationships, that security, that love, I'm getting quite emotional here, but that's knowing that is part of advanced care planning.
49:06
If you do nothing more, that's advanced care planning.
49:08
I'm just gonna ask you for your final part, I think you've sort of said it here.
49:12
What is your final messages to anybody listening, be they healthcare professionals, be they, um, members of the public or anybody else? So for any healthcare professional listening, um.
49:23
It would be fantastic.
49:24
At your next meeting with your next patient, try asking, tell me what matters most to you and for members of the public.
49:33
Share what matters most to you with the people that you care most about.
49:37
Thank you.
49:38
You've said that really succinctly, clear, so I'm gonna leave it there.
49:42
And, um, yeah, thank you so much for joining me, especially after what I know has been a really difficult time for you.
49:49
And thank you so much.
49:50
Thanks Ruth.
49:51
Thanks.
49:51
It's a real pleasure and honor to be on your, your podcast.
49:54
And thank you for inviting me.
49:56
Take care.
49:56
You're more than welcome.
49:57
Take care now.
49:58
Bye.
50:01
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50:04
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50:09
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50:13
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50:17
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50:19
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50:30
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50:31
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50:36
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