Transcript: Discover Care Opinion

Care Opinion is an independent site where anyone can share their stories of adult social care or the NHS.

Podcast Episode: Discover Care Opinion

Category: Adult social care 


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
JM - James Munro
IO - Irene Oldfather
GA - Gina Alexander
GD - Grant Douglas
RL - Richard Lyall

On the 13th of November, attended Discover Care Opinion, an event to launch, as well as discussing explore Care Opinion, the sister site to patient Opinion in Scotland. James Munro, Chief Executive of Patient Opinion, gave us the background on the initiative and its aims.

We started in 2005, we are a social enterprise, not for profit. The original idea was rather unclear really, it was just, wouldn’t it be interesting if people could give feedback online, and we could read peoples stories about their healthcare, and that seemed impossible at the time, but we were lucky to get some support from the Department of Health in England at the time, and built the first version of Patient Opinion, and we have been developing it ever since. And I think our ideas have been developing ever since as well about what this is for and how it can be helpful. And so the place we’ve got to now is that this is about enabling people to give their feedback safely and easily online in ways that help themselves, but also help other users of health and social care, and also help staff to make services better.

In some ways this is much more normal now than it was when we started in 2005, because of course we have seen the enormous rise of social media over the last 10 years, so I think it doesn’t seem strange now to think, actually, it’s a very good thing to be listening to users and carers and letting them know how we’re improving services as a result of what they say.

The essence of it is that social media and online communication allow us to enter a different relationship with the services that we rely on, which is about us being much more active participants in our own care, but also much more active participants in helping to improve services for other people. So that’s what drives us forward, and looking at the extraordinary potential and possibilities of the technology that we now have, to share learning, to share change, share good practice across the whole of the health and social care sector, at much, much lower costs than we could ever do it in the past because once you have somebody’s experience online, you can share it with everybody who needs to see it, and who can benefit from it and can learn from it.

MD Patient Opinion wasn’t really originally a health model …

JM Yes

MD … and it was the Tera Opinion model that was a little bit more about combining health and social care opinion, if you like …

JM That’s right

MD Do you think there’s some challenges around that?

JM There are, there are some real challenges, health and social care are different in all kinds of ways, but the importance differences from our perspective are, in terms of the challenges of trying to maintain peoples anonymity so that people can feel safe, that they won’t be identified, that giving feedback won’t put them in a worse position than they are in when they start. So that’s more of a challenge in social care, for 2 reasons, I think, 1 is that care settings are often very much smaller, and the second thing is that people are often cared for in those care settings for very much longer when they are in healthcare. And so those 2 things make it much more tricky, really, to ensure that we don’t do harm to users and that by giving their feedback, they’re not putting themselves at risk. And likewise, it’s harder to protect staff, individual staff, we don’t see our role as trying to identify underperforming staff or blaming individuals, that’s not what we are about, we’re about learning and improvement. But there is risk that staff can be identified, we try very, very hard not to do that, but of course in a small care setting, that risk does increase. So there are particular challenges in social care and I think we’re only at the start of this journey and there will be lots that we have to learn in order to make sure that we do this safely and effectively in ways that work well for staff and service users and carers.

Irene Oldfather, Director at the Health and Social Care Alliance, spoke about the Alliances role in supporting the development of care opinion.

IO We became involved in Care Opinion because we have a project called Dementia Carer Voices, which is about outreach to people with dementia and their carers, and we kind of use social media to do that and to capture peoples stories around the challenges and barriers that they face in their everyday lives. And we meet regularly with the Cabinet of Secretaries, to feed that lived experience back to him, and he sort of asked us to have a think about how we could have a little bit more openness and transparency within the system around social media, and that kind of led us to patient Opinion and then Care Opinion, and I guess the added value that we bring, as an organisation, the Alliance, we have over 700 members, we are a network, an umbrella organisation, and within that membership we have a whole range of groups, from condition specific groups, like British Heart Foundation, Diabetes Scotland, Alzheimer’s Scotland, to volunteers, to individuals, to Allied Health professionals and associates, and actually some health boards, so we have quite a range, reach and breadth if you like, to our organisation, and I think that gives us strength, it also gives us great opportunities around learning experiences and promoting and broadcasting good practice, supporting people to have their voice heard and to live well and independently in their own communities.

I mean I think communication is so important, we know from our work with people with mental health conditions, with people with Dementia, with unpaid carers, that sometimes the challenge of just getting through the day is a big challenge in itself, and so to have the energy, resources, to become involved in system change, and to bring that voice to bear to influence policy, can be a bit of a challenge, and so part of our role is how can we support people, how can we overcome some of the communication barriers, how do we facilitate people having that really important voice in their communities, in their neighbourhoods, in their lives, and I guess for all of us, what we want to do is connect with people, our families, our streets, our church, whatever our social groups are, and so for us in the Alliance, facilitating and enabling that kind of community connection is really important, and we actually know that the voice of the lived experience within that is a catalyst, a very powerful system redesign and change.

I think bringing transparency and openness to the system is really important, and I think for too long in the past, we have had organisations empowered, but not necessarily people. I think what we hear from people themselves, is that they’re a little bit scared to, they see it as complain, and I think part of what this is about is changing some of that language to say it’s not really about complaining, it’s about telling us your experience, asking people to listen to that experience and to think about, it’s almost like a reflective practice, to think about what could I have done differently that would have made things better for that person today? So sometimes we can’t always change peoples salaries, we can’t give them a new manager, but sometimes just giving them the opportunity to think about what could I have gone on shift today and done a little bit differently, and I think Care Opinion has the opportunity to sort of capture some of that fantastic ability that people have to reflect, and generally people want to do a good job, is my experience, and I think it’s about saying if you did this, that would have made things better for me, so I think It’s about giving people the opportunity to reflect, without rules and regulations and negative language and feeling disempowered, it’s about just to say, you know, when that district nurse put her arm around me and said “you are doing a good job”, that made me feel like I can go the extra mile.

Gina Alexander, Director of Patient Opinion in Scotland, tells us about its benefits and the 2 pilot sites.

GA I have been with Patient Opinion since April 2011, and I came in to really intensify the work in Scotland. Patient Opinion is a UK wide site, so people, since its inception, have always been able to share stories about health services in Scotland, but as I say, my role in April 2011, was to come on board and to start working with health services and spreading the word about patient opinion. So we’ve been doing that since then and it’s just great to be able to now be launching Care Opinion, the sister site of Patient Opinion in Scotland, which fits, in my opinion, perfectly, with the whole integration agenda.

It’s a very simple concept, so it’s a website, it’s an open website, people share their experiences of health and now social care, they share those experiences whether those are good, so half the stories on the site are positive, which is great, or negative, or when I say negative, don’t immediately jump to the conclusion that people want to complain on the site, people might just be offering suggestions, ideas, comments. We very often see stories that people are kind of saying that their experience was great, but elements of it could have been better, you know perhaps around communication or information or really, very often kind of small things that need to be improved to enhance the overall care, health or care experience.

Because of the way Patient Opinion and Care Opinion work together, essentially they are 2 front doors into the same room, so it’s the same website, but just looks different on the front really, and people will be able to share, on either site, people will be able to share their health and care experience and every often as we know, people with health conditions, they receive health services, they receive social care services, you know, from a plethora of organisations, and basically what Patient Opinion, Care Opinion will provide is a one stop shop really, a place for them to tell their story, and we will then make sure that all the service providers that are involved or are named in their story, get access to that story and are alerted to it. And in that process, by seeing somebody’s journey of care, and by all the providers being able to see their part in that journey of care, what we hope is that they will all learn from that, they will learn together and I think that can only be a really powerful thing because my experience of being an integrated service, I actually worked in an integrated service, there was still a lot of division, you’re bringing 2 cultures together, you are bringing 2 quite different organisations, it’s not divisiveness or divisions, but there’s a lot of misunderstanding and a lot of, there’s lack of communication, so if we can, all of us, can use Care Opinion, Patient Opinion, to improve that communication between professionals, I think it will be a good thing but I think we all need to take up that mantle, we all need to get involved with it.

Our Chief Exec, James Munro, always says that Patient Opinion is not about choosing, Care Opinion is not about choosing, it’s about changing, you know, and when we are asking people to give their experience, we are asking them to say what was good about their experience, what could be improved, that is the language that we use, we are trying to use positive, encouraging, improvement based language, and at the end of the day, yes we have more choice in social care than we do in health, but it’s about making sure that the care home at the end of our street, which would be most convenient for the person that I love to go into, is as good as it can possibly be. And in that sense we’re kind of all helping each other, but supporting the proliferation of providers, keeping the conversations constructive and encouraging providers to use this as a tool, a positive tool, as opposed to feeling defensive about it.

We thought it would be a good idea just to kind of test it out in a couple of areas, so we are going to be working in Fife, the health board in Fife have been really enthusiastic about using Patient Opinion, they already have a great relationship with Fife Council, so we are going to be working with them in rolling out Care Opinion in Fife. Will every provider engage, I think they said there was something like 800 social care providers in Fife, so that will be a tall order, but we can certainly start that process. And the other area that we are going to be working with is Ayrshire, so all 3 kind of local authorities in Ayrshire, along with NHS Ayrshire and Arran Health Board. Again, the health board have been really committed and enthusiastic about online feedback through Patient Opinion, and we are going to use their experience and their enthusiasm, and their connections, across health and social care to try the pilot on.

Grant Douglas, an Equality Consultant, tell us about his work and why he thinks Care Opinion is a good thing.

GD I graduated from Napier Uni with a degree in Computer Science. (… unclear) to see how they teach equality for disabled people, and then I wrote to various different organisations to try and achieve equality for disabled people in housing, voting, education and health on a part time consultancy basis on education and health. I have been coming to facilitated group, facilitate discussion with any people whether they were support needs or not, and be impartial … to actually facilitate a group of people, take their ideas and feed that back to the organisation.

MD So, do you see Care Opinion as being a really important initiative?

GD Yes, and they use the feedback and they are not seen as making a complaint or being a troublemaker or anything like that, it’s about the way of improving people services, and also being able to give positive feedback where it’s merited. And a lot of people I have worked with in the past have used care services and have wanted to express opinion about care services and not been able to, because there has been no vehicle out there to use. I remember working with a group a pupils in a segregated school … communication devices to communicate and they would go and do respite care that night, and they were dreading it because the care provider had no idea how to communicate with these people. And at that point there was nothing that we could … no vehicle out there to express that opinion. But now if Care Opinion goes nationwide, then that means they will be able to provide that feedback back to that care provider. There are a lot of benefits, because you don’t get judged on the way you look, the way you talk, you way you act, but on the other hand, there may be a lot of challenges for people who are not technically savvy and don’t feel confident enough to use the online resource. I agree that will be our key area of Care Opinion in wanting to overcome that barrier during the pilot period. I believe in the next 10, 15 years, we will be amazed that generally we will go online very quickly and that everybody will be online and be technically savvy in the next 5, 10 years.

Finally, Richard Lyall, from the Care for Older People’s Unit from the Scottish Government, tells us more about the pilots and the importance of transparency in Care and Support.

RL My involvement has been advising Ministers on issues in the pilot, we have been looking at all the ways that people can feedback on services and primarily the Care Inspectorate of course being a big part of the scrutiny and improvement role in care homes and care home, but we thought there was a need for this and we have been liaising with quite a few stakeholders that are on our older peoples development group, and got support for bringing forward the pilot, funding some … giving some money to fund the pilot and working with colleagues as well, who have been introducing Patient Opinion, which is already up and running and thinking about how, with integration of health and care, how the 2 might in future link up, but we obviously have got to get the pilot up an running now and learn lessons and see what comes out of that, and we are obviously just still at the stage of introducing that now. So that’s really … it’s been kind of … I have been involved in more of the processes of getting support and getting the funding from Ministers and kind of doing all the admin stuff. I have been talking about it, I know it’s been talked about by lots of people for a long time, about having some sort of feedback, I also am involved, my team, in Sponsoring Care Information Scotland, which is also just about to be re-launched, we are hoping to launch it in March of next year, and we went out and asked people what they felt about that, what they wanted from a new service, where they could get care information, and they all said they wanted something more interactive, so that kind of backed up the idea of having something a bit like Care Opinion. So those 2 things have been going on and we decided that actually Care Opinion is the way to do this, but we might well have a link from Care Information Scotland to Care Opinion that’s easy for people to find and have that interactive bit on feeding back on their experiences of care. So there’s been a lot of debate about it for a long time, there has been some nervousness about people putting hostile things down and worries about it being a bit like Trip Advisor, in the bad senses of Trip Advisor, where it can be used nefariously. But we’ve kind of had this debate now and people are genuinely welcoming, we have got to have a way that people can, in an open platform, learn about things, so that things don’t go wrong and there’s early warnings, I think it’s better to be open and transparent and that’s the way that Ministers are feeling as well, and they want to have Care Opinion and see how it goes and look at what other areas it should cover as well. There has been talk about perhaps having a GP opinion and extending it so that you have got the full range of health and care. And we will procure, after the pilot, we have got an option to procure for extra things as well as continuing Patient Opinion, which is already up and going. So we will evaluate once the pilot comes to an end and see what is the whole way this should be run, given that we are going to be moving into integrated health and care services and it’s not going to be as distinct where people actually get their services, and actually people don’t differentiate, they get services and it covers many different areas, but we will see how Care Opinion goes and I am really positive about that.

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