Transcript: ENRICH Scotland: supporting research in care homes

Podcast Episode: ENRICH Scotland: supporting research in care homes

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.

Michelle: Hello and welcome to the Iriss.fm podcast. I’m Michelle and in this episode I speak to Emma Law and Susan Shenkin about ENRICH Scotland, a programme of work that supports research in care homes, the results of which improve the lives of people who live in care homes, their families and care home staff. Emma and Susan are the Co-chairs of ENRICH. Emma has worked in the NHS for over 35 years and is the manager for the neuro progressive and dementia research network since June 2009. Susan is a clinical academic geriatrician with an interest in interdisciplinary research to improve the care of older people in health and social care. We hear about the programme, what it’s achieving and its ambitions.

Welcome Emma and Susan, it’s lovely to speak to you both today about the ENRICH programme. Could I just start by asking you if you could just tell me what ENRICH is and maybe detail some of the work that has been involved to date and how you both got involved with the ENRICH programme.

Emma: So, ENRICH, it stands for Enabling Research in Care Homes and we are really known as ENRICH Scotland because there is ENRICH to the National Institute of Healthcare Research, NIHR in England and Wales. So the background to how I got involved was that I was involved in the NIHR side of ENRICH at its inception in 2012, and what we wanted to do at that point was make sure that Scotland was part of ENRICH. This idea of bringing care homes and having something specific for care homes in research was something that I supported very much, and in my role as the Network Manager of the dementia network, as it was then, I was hooked in to what was going on in NIHR and so we managed to have a sort of Scottish arm. So, we got involved in ENRICH at its inception in 2012.

We wanted Scotland to be part of any initiatives that the NIHR were setting up and in my role as the Network Manager, managed to put a stake in for ENRICH and that we were part of ENRICH. So in that time from 2012 we set up a forum and we recruited around 35 care homes using the NIHR ENRICH’s website and materials. But it was really very difficult, because I had a full-time job working as the Network Manager and there were times through 2012, until Susie joined me, I think roundabout 2018 … and really from that time I think Susie helped me to then develop ENRICH Scotland and in doing so we sort of realised that the time was ripe for the Scottish Government perhaps to put some money behind it.

So, we did a business case and we were successful and what the business case allowed us to do was to bring in a full-time Manager, Maria Drummond, and some part-time Clinical Studies Officers who are the workhorse, I suppose you could call them, of ENRICH, into the four larger teaching boards of Grampian, Tayside, Lothian and Greater Glasgow and Clyde. Since then, we have managed to recruit more than 150 care homes. We’ve got a forum of around 45 people which include the main universities in Scotland and this year we had our inaugural meeting of Rich Voices, which is our patient public involvement arm. The type of studies we’ve been involved in are looking at complex interventions, some focus groups and interviews, online surveys and questionnaires and then analysis of routinely collected data. So, these are the studies that we’ve been involved in. So really, since we’ve had some funding, we’ve really managed to bring ENRICH forward and into something that’s really working, I think.

Michelle: Fantastic, so it’s gone from strength to strength since 2012 which is great to hear, and Susan you came in 2018, so just tell me where your interest in all this has come about.

Susan: Yes, so it’s been a fascinating project really and very much a collaborative effort. I’m a geriatrician, a doctor, Emma’s a nurse by background. We’re both clinical academic researchers, we work with people with social work background and social science background so ENRICH is really very much multidisciplinary and very much informed by the work of what’s important to care homes, to the people who live there, to their families and to the staff who look after them. And our research that we support has worked on all three of those aspects looking both at the residents, their families and the staff. So, I got involved because of a PHD student of mine, Jenni Burton, who, I think has spoken on IRISS before, and has been very interested in the impact on transitions from hospital into care homes, and realised that we didn’t really even understand who lived in care homes and that the data was really very, very poor.

As a geriatrician I have worked very much with older people with a wide range of different conditions in hospital but was very aware that the transition from hospital into 24hr care moving into a new home and a new environment was a really difficult transition and something that was important to people … and that we didn’t really understand that process well, and we also didn’t understand a lot of the things that were important to the people once they moved into that care environment. It is a challenge about how much research you should do with people in care homes because it is their own home, it’s somewhere where they should feel safe and looked after and be able to flourish and be the person they want to be, but just like living in our own homes, we should have the opportunity to take part in research if we want to and make the best evidence that we can to try and promote best practice in care homes as well as everywhere else in our life.

Michelle: It does give voice, doesn’t it, to people who are living in care homes as you say who can participate like anybody else, and research potentially if they’d like to. Why do you think it’s important to do research in care homes?

Susan: The people who live in care homes are among the most vulnerable people in our society. They often have multiple health conditions, they, on average, live less than two years and are often approaching the end of their life, but want to live their life in the most positive way that they can, supported by the people who look after them. I think it’s really important that people understand that they are well looked after and that they are getting the care that is in form by best practice and the staff who look after them do so in a very caring way with high level of skills, which isn’t often well recognised. And I think it’s important that we help to raise the profile of that and the challenges that they face to make sure that they can do their jobs properly and let everyone flourish in their home environment in the care home as well. But residents and families are a really big part of that and that we help to support that as well. I think that research can sometimes be seen as a scary word for people and people don’t understand that research is just providing good evidence to do things in the right way.

Michelle: Sure, to improve people’s lives ultimately as well.

Susan: Yes, because research can be as simple as doing a questionnaire or asking someone’s perspective or just watching what goes on in an environment as well as doing things that are more complicated, like trials of physical interventions like helping people to do a bit more activity in the care home, or things like prescribing drugs or trying to deprescribe drugs, reducing the number of medications that people are taking. So, with research you can cover that whole range of activity. It’s important to say as well as thinking of the bottom-upness of the research, which is essential and where research needs to come from, but given the environment in Scotland at the moment with the development of the National Care Service potentially and the new plans for a national data platform. We think very carefully about how social care fits into that and how care homes really need to be part of that conversation and need to be front and centre of anything that’s decided about in terms of care of older people living in care homes. Because we know that there’s more than 36,000 people currently living in care homes, and that’s more than double the number that are in any NHS beds at any one time.

We need to make sure that peoples’ needs and wishes are clearly articulated, and that we do make sure that they can benefit from the best in research practice. And partly that speaks to some of the future work we want to do, looking at how the data that is used to help to care for residents in care homes can be best used to make sure it improves their lives, and can also help to inform Scottish Government to know what peoples’ needs are and how we can best support them. The piece of work that we’re needing to do right now about what people think about more broadly research in care homes and considering how they would want to react to that in the future if we had to try and do things quickly like we had to do in Covid.

Michelle: And the care home workforce will be a very busy workforce. How do you build the capacity and skills for undertaking research in care homes?

Susan: To improve the care and skills and research is a difficult thing because there are so many competing priorities on care home staffs’ time. And I think just getting a very basic understanding of what research is and how it can improve the likes of the residents and the skills of the practitioners in the care home is important. One thing that we’ve done is that Maria Drummond has developed a very simple guide to research in care homes for care home staff just to briefly introduce that and explain what it is, and I think we can link to that in the show notes and certainly it’ll be accessible to you.

Michelle: Absolutely.

Susan: Emma you might like to say a little bit more about what Maria did there?

Emma: Well yes, as you know she did the “really, what is research?” with IRISS and has developed this online booklet which tries to demystify some of research. So, that’s one of the things that she did. I suppose also the other thing, the question about supporting a busy workforce to build capacity and skills for undertaking research. The Clinical Studies Officers that we have invested in - that is the best thing that we can do to help to support the busy workforce, so that we actually have people who can go into the care homes, whose role is to make contact with the care homes in their Board areas, and assist in their understanding of what research is available to them and to help the homes to carry out the research if they choose to participate … giving the care home someone who is expert in research and has an understanding about the complexities faced within their working environment … which, you know, that’s part of what the investment that we’ve done. So, we’re not saying to the care home, “could you be part of this research” and expect them just to get on with it, we’re supporting them all the way and having this sort of properly funded to ensure the time of the care home staff is not taken up with tasks out with their own field and that the researchers working along with the care homes can proceed with their research in tandem with the care homes.

Michelle: Okay, that’s really important, isn’t it, I guess to making it work. And you have said that you’ve engaged with, is it 150 different care homes? Can you just give me a little bit more detail or an example in terms of one of those care homes perhaps, of the type of research that’s happened?

Susan: I suppose there are two different things, one is just to say that this certification of research ready, these 150 care homes that sign up to be, what we call, “research ready” means that they have a certificate that they can display in the care home and it has been endorsed by the Care Expectorate in Scotland as well. So, they value that, and it shows that they are engaged and happy to be involved in discussions about research. It doesn’t say any more than that, but it just opens the door to having the discussion. It doesn’t imply that they’ll do anything particular or take any more benefit, but it just gives us people that we can contact in the first instance.

Because ENRICH has only really been … ENRICH Scotland has only been funded really for the last year. Many of the projects that we are starting to engage with have been going since before ENRICH started and one example of that would be our Care Home Innovation Partnership, so this is called CHIP and it’s a group of six care homes initially that was brought together by Dr Jo Hockley as part of her vision for teaching in a research-based care home in Scotland. And the idea was to bring together care homes that were interested in innovation and developing new things and research being a part of that, and we worked together with the six care homes to develop projects that they were interested in and could become research ideas.

One big idea that came out of that during Covid was the OSCARS, the Online Supportive Conversations and Reflection Sessions, which were a way of developing an idea that happened before Covid where, when a resident died in a care home, a facilitated discussion was had around that resident … because the care home staff know them very, very well, having lived in the care home for a long time and very affected by that death. So, they got together with an external facilitator to talk about the learning that they could have around that person’s death, and then when Covid happened of course, there was a huge implication of massive suffering and death associated with that but nobody was able to come into the care homes to discuss that with the staff and the affect it had had on them.

So, we developed these online sessions where Dr Hockley and Dr Julie Watson helped to teach a group of practitioners to do online sessions with care homes to help them to talk about what had happened about the resident’s death and to see what emotions they would share about that, and then what learning they could do to help them to support each other and to care just as well, or better, for the next resident who was dying in the care home. Because we know that people reach the end of their days often in care homes and that we can provide really, really high quality care there. So, we did a research project that was supported by what was then called the Edinburgh and Lothian Health Foundation to show that that process worked, that we were able to deliver the online sessions to the staff and that they found that beneficial and that has now been taken on by NHS Lothian as part of their ongoing support for care homes. So that’s something that’s really gone from an idea that came from care home staff, that went to be a research project that’s now moved into part of standard care in the NHS.

Michelle: And part of practise as well, so very practical research there, if you like, yes.

Susan: Absolutely. Emma, do you have another example?

Emma: I suppose an example I could give is from my own doctoral work which was in 2015. But what I was looking at was the difference between a care home who were active in research and care homes who were not active in research. I did a sort of deep dig into what differences did that make and what were the outcomes? So, I did a very in depth analysis of three care homes, one which was very active in research, one that had sort of skirted around and one that hadn’t. And in the care home where they were not research active, the junior staff thought the management distant. They didn’t listen to them or any ideas that they had, and the manager admitted that they didn’t keep up with current trends and felt this was unnecessary. And the whole atmosphere in that particular care home was tense, and junior staff were obviously unhappy.

But in the care home where research was active the atmosphere was much more positive, as soon as you walked in, there were notices on the board about what research was going on, the staff were very motivated and one even admitted to coming in on days off as she loved working there so much. The relatives and residents had a very positive experience and talked very highly of the care they received in the home, and the manager was at pains to explain the development opportunities they gave their staff and was proud of their staff’s achievements. So, looking at the care home that’s research active compared to one that didn’t even really think research was necessary and the stark differences between the two, was very interesting and I learned a lot from that.

Michelle: Okay, and how did they make the links between the research and those outcomes of staff being happier?

Emma: Well I suppose linking it back to research ready and it sort of built on the evidence that we’re looking at is, why is research even necessary? Why bother with care homes and bringing research into care homes? And it was good, it built on the body of evidence of why taking research and the idea of research to care homes is actually a really positive thing for care homes in general.

Michelle: And that’s what you heard from the staff, was it?

Emma: Yes. I mean it’s more complex because I was looking at citizenship as well in care homes and whether people experienced citizenship and whether there was a link between research and those feelings of citizenship, which there was, but you know, that’s going in more depth into the work that I was doing. Involving more care homes and having people who are interested in research, that’s possibly something that we could take back at some point because now we’ve got way more care homes involved in research in Scotland than we had back then. When I was looking at my doctoral research which was, as I say, I was doing the field work round about 2014/2015, it was really hard to find a care home who’d actually been involved in research. So, yes, that’s very different now, I think. There are care homes that have been involved in the research that we’ve been doing anyway so it’s much more prevalent now to have care homes involved in research.

Michelle: If people are listening to this and they’re thinking, “Oh this is quite interesting, you know, for our care home or our organisation to think about this.” So, what needs to really be in place to allow the research to happen?

Emma: The best thing that a care home could do if they were interested in being part of research, is to contact us through ENRICH and sign up to being a research-rated care home. What that does, is it connects the care home to what research is going on locally. They’ll get a newsletter about what research is going on, but more importantly they’ll have this Clinical Studies Officer assigned to their care home, so they will then have somebody that they can call on who will help them through the research maze. I mean sometimes, as I say, it’s very simple, it might just be answering a questionnaire, but if they’re interested in something a little bit more in depth and it’s in their area, that Clinical Studies Officer can help them through that. Again, they’ll get the certificate which is endorsed by the Care Inspectorate. They don’t have to have special things in place, really just a willingness to consider approaches from researchers about any research that arises. I think it’s really important to get that message across that they don’t need to be experts in research.

Susan: The thing to make clear is that we’re not asking them to come up with, to do the research. So, there are two different ways, sometimes researchers have a project in mind which they have applied for funding and they are trying to do. And we’re just looking for a care home to help us to deliver that and then we can say to the care homes, “these are the ideas we currently have, would you like to take part?” But the other part that we are trying to also in-bed and enrich is to say to the care homes, “have you got something you are particularly keen on?”

When we sign up we ask them which areas they are particularly interested in and in a previous survey they said, “actually most of them were open to anything”. But some of them were specific about dementia care, staff wellbeing, activities, fall prevention, something like the digital assistance and then we can work with them with researchers in a process of what’s called “patient and public involvement” which includes both the care home staff as well as residents and families to co-create research ideas and build that together to answer the questions that are really important to the people who live and work in care homes. Partly responsive but it’s partly, and they can be as active as they like and that’s partly what the CHIP partnership has done, is create small communities of care homes that work in similar local areas, that come together to develop ideas and then talk about them with researchers and then go on to try and develop them into more formal projects. So, you can be as involved or not involved as you want but if you have a passion to take that forward and to try and build ideas yourself then we can link you with the people who have the skills to do that.

Michelle: And you are hosting the first ENRICH Conference this October, on 26th October, isn’t it? Excellent, tell me a little bit about the theme of the Conference and what’s happening on the day.

Susan: The Conference is called ‘Research in Care Homes - Why it’s Everyone’s Business’. And really the theme is about bringing everyone together and talking about why it’s important for everyone to understand what research is and how it can benefit residents, families and staff. It’s being held at the Zoo, the Edinburgh Zoo so the people who are attending will get to go round the zoo after they’ve attended the Conference but it’s all sold out for the in-person tickets, but people can still attend online if they’d like to. More than half of our attendees will be people who work in care homes to make sure it really very much is focused on their needs and the partnership with the academics, not making one more important than the other. It’s all about working together, it’s everyone’s business.

Michelle: Fantastic. Well, I’d just like to thank you both for the conversation today about the ENRICH programme and wishing the Conference on the 26th every success.

Susan: Thank you.

Emma: Thank you very much.

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