Wild Card - Whose Shoes?

42. Rachel Power - patients as equal partners in the NHS

December 04, 2022 Gill Phillips @WhoseShoes
Wild Card - Whose Shoes?
42. Rachel Power - patients as equal partners in the NHS
Show Notes Transcript Chapter Markers

Today I am talking to Rachel Power, CEO of the Patients' Association. Huge thanks to our mutual friend, Yvonne Newbold for introducing us!

The Patients' Association was established almost 60 years ago and is a membership forum - why not join?

Rachel is a strong advocate for patient partnership; her organisation is highly influential, helping patient voices be heard by NHS England and the government.

I'm hoping that this important conversation will form a bit of a 'pincer movement' with Episode 25, in which Miles Sibley, founder of the Patient Experience Library provides real evidence that 'patient stories' are not only important but should have equal weight with medical stories.

Lemon lightbulbs 🍋💡🍋

  • I joined the Patients Association! It's free! Why don't you?
  • Coproduction? Don’t get hung up on the latest buzz word – just think what the person in the street would understand
  • Focus on what is meaningful to people – e.g. Andrea Sutcliffe's 'The Mum test'
  • Let’s not measure things just because they are easy to measure
  • Measuring the impact of things that matter can be hard
  • People have survey fatigue - be imaginative about seeking feedback
     - e.g. ask people in 6 months' time whether your intervention made a difference
  • BRAN - the 'Benefits, the Risks, the Alternatives and the do Nothing' methodology is powerful 
  • “If I still can’t do my gardening, then why would I want that knee operation?”
    - a classic example of 'What Matters To You?' #WMTY
  • Seek to identify and overcome the barriers to shared decision-making
  • Most people just want to know that things will be different; they don’t necessarily want to complain
  • Let’s keep things simple; not over-complicate!
  • Always remember - behind the statistics, there are human beings
  • Patient stories should have equal weight with medical stories (Miles Sibley)
  • The Patients’ Association works closely with the NHS - help them!
  • Digital solutions sometimes exacerbate health inequalities - be inclusive and imaginative
  • Bring things to people and making them accessible - Nailsea is a good example
  • The cost-of-living crisis is widening inequalities
  • The Patients’ Association has lots of practical resources to help people access health care and feel empowered, including a Helpline
  • Our key message for Amanda Pritchard, CEO of the NHS – patient partnership is the way forward!

Links and resources
The Patients' Association
Miles Sibley, Founder of Patient Experience Library
Yvonne Newbold - Founder of Newbold Hope

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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.

Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.

Gill Phillips  00:10
My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 Wild Card and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, 'Whose Shoes - Wild Card' is for you.

 Gill Phillips  00:45
Hello, and welcome to another episode of 'Whose Shoes - Wild Card'. A key theme that has run through the whole podcast series is the importance of listening to people and believing what they say, and specifically listening to patients. Today I'm looking forward to chatting to Rachel Power, the Chief Executive of the Patients' Association. I've never spoken to Rachel before, but we've been introduced by our mutual friend, Yvonne Newbold. Yvonne says there's a lot of synergy between the work of the Patients' Association and the work that I do with Whose Shoes and when Yvonne says that someone will be an amazing podcast guest, I sit up and listen. Just look at what happened when she introduced me to Rachel Tomlinson, Episode 27. It is still the most listened to podcast in the entire series. So welcome to another Rachel. I don't know what the collective noun is for Rachels, but there are quite a few of you now in the series. I'm really looking forward to hearing about you as a person and the important work that you do, and the difference it's making.

Rachel Power  01:55
Hi, Gill, great to be here. Thank you so much. So do you want me to tell you a little bit about myself and our organisation first? 

Gill Phillips  02:04
That would be amazing. Yes, please. 

Rachel Power  02:05
I'm very happy to be the Chief Executive of the Patients' Association. And I've been there for five years. And we're a non disease, non condition specific charity. So we deal with issues that affect all patients. And uniquely we are a membership organisation. So patients, families and those interested in health care sign up as as members. And we do a variety of different work with a national freephone helpline, which patients, the carers and their loved ones can ring to get advice and information and a bit of signposting and support about what the next steps might be in accessing the health care that they need. We run a lot of projects. And we run a lot of focus groups, where we bring patients together to talk to them about specific issues within health and social care to make sure that we get their views. So that when I'm speaking, or a member of my team, we're speaking with the views that we've heard directly from patients. So our strategy is very much about patient partnership. And it's around patient partnership and the design and delivery of services because we believe passionately, that if you involve patients in designing a service, and you involve them from the beginning, and you involve them in a way that's really meaningful, then you will design a service that works for patients, which will then work for healthcare professionals, and will aid really good governance and really show the way to listening, and truly listening to patients. But it also makes sure that those services are safer and better for patients. We also do a lot of work talking to government. So we we take what we hear from patients and we speak to NHS and we speak to government about what we believe patients need and want. And I think we bring everything back to to the individual patient in that, you know, the really important thing is what matters to that individual and how that person can live their best life. So I'm delighted to be here. I'm really delighted that Yvonne Newbold introduced me, because any friend of Yvonne's is a friend of mine. Yeah, and I'm looking forward to chatting more. 

Rachel Power  03:08
That's great, Rachel, it's lovely to start the conversation and to hear about the work that you're doing. And it'd be interesting in terms of co-production. Is that a buzzword? Does it matter? And I think for me, you've just described co-production perfectly in terms of working properly with people and what matters to them. And helping people take their voice right through to the people that can actually listen and do something about it, ultimately, the government and policymakers and that's a very important bridge to be building for people. 

 Rachel Power  04:40
Yeah, I think there's just so many words, isn't there? There's so many words out there, and there's co-production, patient engagement. And I think I could probably list about 20 of them and, and we use the word 'partnership', because the way I think about it is that if you ask somebody at the end of the street what partnership means, they'll understand that - more than maybe they'd understand, if you're not involved in health and care well, co-production looks like and what it is. And sometimes we get very bogged down in the jargon of language that we're talking about. So, yeah, absolutely, this is about co-production. But it's also about that shared decision making. And part of what we've been working on this year is understanding the barriers to shared decision making. Because I think that if you can get that individual relationship between the healthcare professional and the patient working really, really well, you'll get partnership and you'll get co-production. But it's that confidence of the healthcare professional, to give the power to a patient to be able to do this properly. And to be able to work in partnership or a co-production or shared decision making. We have a lived experience advisory panel, and I brought them together to help guide me in the work that we're doing within the Patient Association. And it's really interesting working with them. And we recruited people who we really felt hadn't been listened to by the system, and who had experienced really difficult experiences as a result of their interaction with the system. And I suppose they would be people that you could describe as those people at risk of inequalities and risk of equality of access of services. And when I talked to them, we've had to pull together a jargon busting dictionary, because the language that we all use that I you know, language that I use sometimes, and they'll look at me and go, "What do you mean by that?" So I think if we are to get this right, we have to start talking in plain English and thinking about kind of health literacy age so that we can bring everyone with us on the journey of partnership. 

Gill Phillips  06:48
So already, I can see why Yvonne Newbold has brought us together, because I do loads of work around jargon and jargon busting. And I think, to have, generally, I guess, in our work to have little simple tests as to what is meaningful. So, like Andrea Sutcliffe and her 'Mum test'? 

 Rachel Power  07:06
Yeah. 

Gill Phillips  07:06
When she was Chief Executive of ...

 Rachel Power  07:08
... which was at CQC, when she was at CQC? And "Is this good enough for your mum?"

 Gill Phillips  07:14
That's right.  

Rachel Power  07:15
And that's a really good test. And before I joined the Patients Association, I worked in children's hospice care, and regularly had to use that test in my head, when we were looking at services, and we were evaluating services. And you know, we changed it slightly, because it was, "Is this good enough for my child?" You know, would I be happy if my child is experiencing the service? And if you're able to answer yes. And genuinely answer, yes, then, you know, it's a good service. But I think it's back to, you know, we've had so much through the pandemic, we've seen such transformation. You know, we hear about how people access their GP services, should it be online? Should it be face to face? What should it be? How should it work, but it's all about the individual. It's all about doing shared decision making with that individual and going back and saying, okay, so Gill, we need to see you. What matters to you, what's going to work with you? Because digital is great but so is face to face, and it's about the individual, and we've got to understand, who is that person and what is it they want to achieve in their lives? And I think that brings me on to, you know, how do we measure the experience of receiving a service because I think quite often ... somebody described it to me the other day, it  is really interesting. And there's a gentleman who a few years ago had quite severe mental health issues going on - this was his  description - and he was chronically obese. And he was being told he had to lose weight in order to get a treatment. And he was saying, you know, the GP was completely right. And the consultant was right, he had to lose weight. But what would happen is, he'd be told to do that, and then he'd be kind of let off to do his own thing. And within 5-10 minutes, he'd get this text saying, "How was your appointment? Was your appointment on time?" And he'd say, he'd go back and you say, yeah, it was great. And he said "I was sittng in McDonald's, eating a burger, because I was so freaked out by everything they were telling me. And then I was just on my own when I went out. So, you know, I think we have to move this on to measuring what's important to people.  

Gill Phillips  09:17
Yeah.  

Rachel Power  09:18
And how if I go and see a consultant or have a treatment in hospital, how doing that allow me to live my life to the full in the way that I want to live my life.  

Gill Phillips  09:31
I love that.  

Rachel Power  09:32
Yeah, not measure the success of the service, because all those things are important, but the big thing is the importance of ... did it make a difference to an individual's life? 

Gill Phillips  09:45
That's striking so many different sort of resonances with me and when people say to me, "Oh, you had a Whose Shoes workshop? Was it a good workshop?" And I'll think well, it was good fun, people engaged with it. We had some cake we had some good conversations, we've got a fantastic visual record of the session. But until something actually happens differently as a result of it, I don't know whether it was really a good session, because you look back in the future and decide, wow, look what's happened as a result of that, and then it becomes a good session. 

Rachel Power  10:15
Yeah. And it's a really difficult thing for any organisation, isn't it? Because it's something we're looking at at the Patient Association very much, it's how do you measure the impact of the difference you've achieved? 

Gill Phillips  10:25
Yeah. 

 Rachel Power  10:26
I don't know ... there's a lot of survey fatigue out there as well. And, you know, I remember working when I was working in hospice care, and  parents would tell me that, you know, they'd get five or six different kind of feedback surveys after different appointments. So in the end, people are just going "Yeah, that's good. That was good. This is good". We're asking too much. Are we asking the right questions, how are we getting those questions, right? So that we can go back and say ... I leave a hospital appointment now when somebody says to me, how did it go? It's probably "fine". But when do you ask me in six months time? "What difference did that have in your life? What did it allow you to do differently?" And there's a lot of stories out there, where if that conversation has happened with patients, and that they might make a different choice. So if you're doing that shared decision making, and you're looking at, what's it called, again, BRAN ... the benefits, the Benefits, the Risks, the Alternatives, and the Do Nothing way of doing shared decision making? Often patients might choose to do nothing, because the conversation has been right. And they've been able to have ... and  a prime example of this is a consultant up in Scotland, I think it was and your readers probably know this. But it was a woman about to have ... a woman in her later eighties, about to have her knee replaced. And when she was leaving, after a pre-op, she was like, "Oh, that's great. I can go out and do my garden again. And I can tend to my ..." and the consultant said, "No, you're not going to be able to do that level of gardening, like on your knees and everything". And she went, "Well, why am I having the operation? Well, like that was the only reason I'm having the operation". So yeah, we really have to. And when we did some work with healthcare professionals around shared decision making, one of the things that they said came up as the barriers ... they were really positive about it, but one of the barriers was having enough time to do it. And the other barrier that came up quite a lot was IT systems, and how there isn't one place that has the whole record of the individual in a holistic way. So you can look at the whole person. So I do think that that's something that the NHS could really work on in making sure that IT systems work well to allow shared decision making to happen. 

Gill Phillips  12:35
Yeah, honestly, there are so many different threads here. And it's fantastic.

Rachel Power  12:40
Sorry, am I going off all over the place? 

Gill Phillips  12:44
No, well, I love people who go off all over the place. That's the whole point, isn't it? And the trouble is, I go off all over the place. And if you tried to map what's going on, and the different ... we talk about lemon light bulbs, and so on, but you've talked about survey fatigue. And I think that's fascinating. And I think for me, it's about people having the chance to say at the right point, what matters to them. So for example, how things interrelate. And one of the most interesting bits of feedback that I got involved in was a debriefing, or whatever you might like to call it, reflections, after a birth. And it wasn't a complaint. So often people think in terms of you know, something happens, and well, perhaps you should make a complaint about that, and someone for whatever reason, chooses to or not, and then it becomes a complaint. And it's all that adversarial kind of language. But this was just a Head of Midwifery, who was really keen to listen to what really hadn't been a great story. But I think the important thing was how everything linked together and how one thing led to another thing. And then they came up with an actual action plan based on that story, and like picking up on the nuances in it, and the things that will make a difference to lots of women and families. 

 Rachel Power  14:02
Yeah. 

Gill Phillips  14:03
But perhaps aren't in the bracket of 'this is what went wrong. And let's explore that. And let's probably justify or defend that', rather than a proper conversation about learning. 

Rachel Power  14:13
And I think that's it. That's what I was gonna say, it's about the learning. And the majority of patients who were in our helpline, or their family members just want to know that things will be different and they want to be listened to, but actively listened to, and know that by raising it ... so I think we could avoid a lot of the complaints process if at the very beginning, people genuinely felt listened to and that the system was trying to learn from the mistakes or what has happened. Because most people don't want to go into the litigation system. They get there because actually, they're battling and you imagine if something goes wrong for you in a treatment or for your family member, and then you're faced with what you perceive, and probably likely, that the system's not listening or not learning. And we've had this this year, again with another maternity inquiry in East Kent and you know, the very clear message coming out of this is, we have to stop looking at individual, how do we get hospitals across the board to pick up on the learnings that are being found in individual trusts, and in my time at the Patients' Association, I think it's coming up to four different inquiries that, you know, are all horrendous outcomes for patients who have not been listened to, and a lot of time been gaslighted. And we really, genuinely need to have, to get that culture. And there's something about the culture in these systems that isn't listening. And I think that that brings me back to partnership, because if we genuinely want to work in partnership, and genuinely want to work in a shared decision way, then that culture of openness and integrity needs to be really part of that, but I think partnership can help that. Because, you know, we need to work together

Gill Phillips  16:02
Hugely. Yeah. 

Rachel Power  16:04
Because it's not the patient and the NHS or the health and care system. It's patients, and health and care system together. And in a lot of cases, you know, healthcare staff or patients too, and have worked extremely hard during the pandemic, of course, yeah. 

Gill Phillips  16:22
And interestingly, one of our ... with the actual Whose Shoes board game and scenarios, one of the earliest now is very, very simple. "I never wanted to make a complaint. I just wanted to be listened to", and resonate so much with what  you're saying, Rachel. 

Rachel Power  16:38
Absolutely. And it resonated completely. We do work with a lot of patients. And we do a lot of work with with NHS Trusts around complaints management. And that comes in loud - loud and clear. I just wanted to be listened too, I want to know that there's a difference. I want somebody to hear my story and my story be used for the better of others. That sounds so simple, doesn't it? 

 Gill Phillips  17:01
It sounds so simple, doesn't it? But simple things are the things that make a difference. I think so much is overcomplicated. It's not about for me the 200-page research report or the management report or something, it's picking up on those little things and actually doing something about it and joining stuff up more.

Rachel Power  17:20
I think we rely too much on stats as well. I think sometimes there's so much statistics about you know: X amount of people said this was really good; X amount of people weren't happy. I think we need to get more into listening to the actual stories, and really listen to patient stories and spend time, you know, because if you listen to one patient story, you can learn so much from it. It just sometimes for me feels like the more stats we look at, we forget that behind the stats are human beings and peoples with stories and with lives and lives that they may be waiting for a treatment, and if you're waiting for treatment, then that has an impact on your ability to go to work. It has an impact on your income ... We need to look at the whole holistic thing of what we need in place to help us live good lives.

Gill Phillips  18:07
And that's exactly where I'm thinking that the podcast episode that I recorded with Miles Sibley, which I absolutely loved, and he's talking ... very, very similar Rachel in terms of data and how basically people measure things that are easy to measure because they're easy to measure, but they're not necessarily the things that people need to know. Whereas patient stories, storytelling, it's harder to measure. But he talks a lot about how patient stories, patient experiences, not only should have equal weight with medical stories, but what I loved about it was, why that's the case. And he's very clever in that he's reporting on that scientifically as evidence-based, rather than just probably as I went from the heart that this is howe things should be 

 Rachel Power  18:55
Yeah. 

Gill Phillips  18:55
So I'm hoping that this episode with you, and the episode with Miles are going to be a bit of a pincer movement now in this healthcare space

 Rachel Power  19:04
 Good, good to hear it!

Gill Phillips  19:05
To make the same kind of points but from different angles.

Rachel Power  19:09
Yeah, so we've done quite a lot of work with colleagues in the NHS, where we've helped them by getting patient stories for them. So if they want something to represent a change that they're achieving. But I think the important thing is that we get the diversity of those patient voices as well. So if we look back through the pandemic, if we look back at what Sir Michael Marmot has reported over equity of access to health care and life expectancy in this country, we have to be careful that we hear those stories and those people that some people describe as 'hard to reach', which I don't agree with. It's just that I don't think we try hard enough. And we need to become part of people's communities and we need to understand their stories and we need to understand that we are more than just one thing. There's different parts of our culture and our backgrounds and our day to day living that form who I am as a whole person. But we've got to get to those voices and really hear those diverse voices and understand what they need from healthcare service. Because without that, we will continue to have this issue of equality of access to services. And back to the very beginning of our conversation, my lived experience advisory panel, are ... you're talking about accessibility of language or jargon-busting dictionaries, we can get those stories and really try to get system to work for people who haven't been heard, then, then we've got a great job ahead of us. You know, when Amanda Pritchard started as Chief Executive, you can see her passion for wanting to get shared decision making working, and for partnership, but ... 

Gill Phillips  20:25
You can 

Rachel Power  20:48
No I can, absolutely. And then you ... but the system is so big, and you know, we've got all these integrated care systems and, you know, trying to get to 43 different systems and really kind of work with leaders in there to make sure that they really understand the value of partnership. So what we're doing at the moment, we're putting together a kind of a framework, a methodology, something -  I'm not sure what it's going to be called, but it'll have the principles of what a good partnership looks like. We're working with patients and stakeholders to work that out, then systems and locations can kind of pull that and go "Okay, well, if we're doing this, we're doing it well. If we're not doing a few of these things, then we're not doing it so well". And you know, I just think that'll be a really good way of being able to measure ourselves and how we do partnership, because I think for the future, we have to have partnership. ... (Dog barking ...) Sorry,  it's calmed down again. Working with dogs and Irish people, Gill, this is your problem, and men turning up and digging the road.

Gill Phillips  21:55
This is called the real world. And we've had dogs on the podcast before. In fact they're becoming a bit of a favourite. Yeah. So coming back, we've had various bits of the conversation talking about health inequalities, and whether people are hard to reach or whether it's just because we're not trying hard enough. And so on, and I think, for me, this runs through everything. So for example, at the moment, I think we've mentioned, just briefly digital inequalities, and also digital literacy, health literacy, and so on. So I'm trying to do this, through everything I'm doing. So we're developing a digital version of Whose Shoes at the moment around Family Integrated Care. And in terms of our project team, there's one person and she was apologising, she was, "Oh, you know, I'm a technophobe. And you'll have to bear with me". And I said to her, "I am so glad to have you on the team!" Because in all of these different contexts, I think these are the people that we need to be developing for, the people who don't immediately jump into the jargon and don't immediately embrace all the words and the phrases and the technology that we take for granted. And it was hilarious, actually, because my husband's one of the IT people that is very, very good, and working with us and so on. And I said, "let's come up with some frequently asked questions". And it was about what type of mob ile web-browsing app or whatever this tool was going to be. And let's get the question right that would be a question if it's frequently asked that people might ask, and let's get the answer helpful in terms of actually describing in English, what it is they probably want to know, rather than the history of Microsoft. 

Rachel Power  23:42
I run a digital coalition, I chair it, and it's about how to engage patients completely and the public in digital transformation.  

Gill Phillips  23:53
That is so interesting.  

Rachel Power  23:54
Yeah, there's some really good case studies in a report that's on our website at the moment. But one of the case studies is Nailsea in Somerset. And it was a project we were involved in years ago, but the local town, Hall took it over and kept running ash. And it's about enabling people to feel that they have the knowledge to do digital. And what they did was they had volunteers and they had it on the high road, so that people could just pass you know, they're going off to the shopping, they can pop in, they can check out they can have a chat with a volunteer, but they have a chat with a volunteer who isn't all techie with them. So it feels much more accessible. And they learn then how to do what they want to do on the internet and through digital around their own health as well. I think we've got to learn to bring things more to people and use places where people are already meeting to kind of build this ... 

Gill Phillips  24:47
Yeah. 

Rachel Power  24:47
... this knowledge and skills and, of course, we're in the middle of a cost of living crisis. And I suppose one of the things that worries me about digital is if you're living in, you know, there's a lot of different things ... if you're living in a rural area, you may not have strong digital But you may not be able to afford Wi-Fi. So we've got to, you know, make sure that things remain accessible to people. When we're moving towards digital. 

Gill Phillips  25:08
I love the way you talk about bringing things to people. And I think something I learned, obviously doing a bit of research before talking to you. And you mentioned already, I think the help-line, and I love the idea that you've got something that people can actually, as I understand, phone up and talk to a person on their own terms, rather than it being a survey or a form to fill in or something that's basically on the terms of the person who puts it together.

Rachel Power  25:33
You know, so a lot of our work in the help-line will be very much signposting because we are a non-disease non-condition specific, but it will also be helping people to find out where they can find the information about what next steps there are, that they can take. So our website also has a range of resources from how to access your medical records, to preparing for your GP appointment, a lot of information is on there about shared decision making. So people make choices to whether they contact our helpline directly, and have a chat with one of our advisors, or they can use the advice resources on the website or, they can do a bit of both. So they can read the advice, information resource, and then can ring the helpline to clarify some points, or they can have the chat and then read the information. So it's about giving as much power as we can to the patient, to take the control that they want to take in what's important to them at that moment in time. But the other thing we've done, Gill is we've launched a campaigning and influencing section on our website, because our members said actually they would like some support to do some influencing work locally. And being such a small organisation, we can't do it. So we've launched how to write your MP on our website. So to allow people to be as involved as they want in a) their own health and care but b) the provision of health and care in their areas.

 Gill Phillips  26:57
That's fantastic. Yeah. So how should we pull this together? Hmm, we've had a really great conversation here. What do you think are the key things that you'd either like to emphasise or perhaps add at the end?

Rachel Power  27:09
Yeah, so the Patients Association, we're just looking at the next year, and you know, we're going to have a really, really tough winter. And we know that it's going to be a tough winter for patients. And we do appreciate how hard health and care staff and frontline staff have worked throughout the pandemic and continue to work. But I suppose for me what we are really hoping that there's really good and clear communication for patients over the next few months ... and the elective, long waiting lists ... These all have huge impact on people's ability to live their lives. So we'll be spending a long time closely trying to support and work closely with NHS England to make sure that people have the information that they need to keep well during these periods. And I think that's really important. But then we'll also be moving forward our strategy in the hope that we can pilot in some areas, our patient partnership approach, and really kind of measure the impact and evaluate how that goes and how it works for both patients and healthcare professionals. And I suppose for me, the other thing that we'll be working really closely on for the next year is ... for anyone listening to the podcast, there's a numerous amount of reports on our website that we've done with healthcare professionals and patients around shared decision making, and partnerships. So it'd be taking all of that forward because in the next three years, we really hope to have patient partnership as a core part of how the NHS structures its work. 

Gill Phillips  28:37
I love the fact that we mentioned Amanda Prichard because, as I think you know, this podcast was originally set up for Amanda Prichard in that I was picked out as an HSJ100 Wild Card, as someone who perhaps should be listened to more by the ... 

Rachel Power  28:52
Yeah! Well done! 

Gill Phillips  28:54
Thank you. But then I thought, "Well, really, it's not about what I think Amanda Pritchard should be listening to, it's really this amazing network of people that I've got. Or in your case people ... it's networking, isn't it? Through Yvonne,  now I've met you. So what were the key messages either for Amanda Pritchard be, or perhaps for us to understand the incredibly difficult position that she's in as someone who's really wanting to embrace all these different messages and patient-centeredness, but in the real world at the moment of the NHS, which is just so, so difficult? 

Rachel Power  29:29
Yeah. And that, you know, it's a difficult job, but I suppose, I believe the evidence is there that if patient partnership approach is used in the design and delivery of any service that the NHS provides, and we start with patients, then we start understanding what patients need and how they need it, and we work closely with healthcare professionals in that area as well, then we will design good stuff. So I suppose that would be my key m essage is ... really push the patient partnership agenda and make sure that we work together, patients and the healthcare system in partnership. And as equal partners.

 Gill Phillips  30:08
Perfect. So patients and healthcare professionals working is equal partnerships and not getting too hung up about whether it's called co-production co-design or whatever. Let's just do it!

Rachel Power  30:21
Let's just do it! That's the answer.

Gill Phillips  30:23
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Rachel Power is Chief Executive of the Patients’ Association
It is all about partnership with patients
Coproduction? Don’t get hung up on the latest buzz words – just think what the person in the street would understand
How do we measure the experience of receiving a service?
Focus on what is meaningful to people – e.g. the 'Mum test'
Let’s not measure things, just because they are easy to measure. Measuring the impact of things that matter can be hard.
Survey fatigue
BRAN. “If I still can’t do my gardening, then why would I want that knee operation?” # WMTY
What are the barriers to shared decision-making?
Most people just want to know that things will be different. They don’t necessarily want to complain.
Let’s keep things simple; not over-complicate them
Always remember that behind statistics, there are human beings
Why patient stories should have equal weight with medical stories … a pincer movement with Miles Sibley!
The Patients’ Association working with the NHS
The future of partnership
Digital solutions sometimes exacerbate health inequalities
Nailsea - best practice in the community - bringing things to people and making them accessible
The cost of living crisis
The Patients’ Association has lots of practical resources to help people access health care and feel empowered
Rachel’s key message for Amanda Pritchard, CEO of the NHS – patient partnership is the way forward!