Written evidence submitted by Group 3 (Event 1) (DHS0047)

Transcript of roundtable event with members of the health care workforce held on Thursday 22nd September 2022 for the Health and Social Care Expert Panel.

Group 3

Participant A: So good afternoon. My name is Participant A I am a social worker. I am also the chief executive of a learning disabilities supported living environment for adults. I also represent a Care Association. So I'm delighted to be on board here today.

Participant B: I'm Participant B and I currently work in domiciliary care. I also was an NHS operational manager working with specialist commissioning. I also sat on the Better Care at Home workstream which was looking at kind of how you can smooth some of those journeys. So it's an area that I'm particularly interested in and then we have some family problems with you know family experiences of autism, then acquired brain injury and a few other bits and pieces. So somewhere I've been across most things.

Participant C: Good evening, everybody. My name's Participant C. I represent a national provider of care and support for people with learning disabilities and autism. My background is mixed, but in the last few years I've worked in a number of organizations supporting people with physical and learning disabilities and so we're sort of at the opposite end being a national charity but doing a little bit almost everywhere.

Noel Gordon: Perfect. Well, let's begin. Steve and I will sort of toggle between each question or alternate between them, and maybe I'll just kick off. First question is focusing, as Steve said, on service users in social care. We are particularly looking at the NHS App and the benefits or drawbacks that you have seen associated with the introduction of the NHS App, insofar as either you, your staff, your patients as it were, or even their families and their caregivers utilized the app in any part of the home ecosystem. We'd be very interested in your views on how you think it's contributed to the quality of care or the timeliness, or the access of care services, including NHS services for your users. Or if you don't think it's contributed, then why do you think people don't use it and is there something that could be done at policy level in the NHS to make it more useful for patients and service users? Would anyone like to kick off who has any experience of the NHS app in the in their operations? Yes, Participant C.

Participant C: Thanks Noel I’m not sure if this is entirely helpful, but I refer to the COVID lockdown period. And if I reference the sort of people we support, many of whom don't have capacity and therefore have advocates or have people who support them and are decision makers for them. And what we've experienced is people using the NHS App, particularly during that period attempting to identify simple things like vaccination queues and that that sort of thing, but also the more complex and the usual sorts of things that you would use the app for. The problem we have in in the sector that I work in is that is the accessibility of the technology as a determinant of whether people use it or not. And that's quite fundamental. I also know that's a huge challenge because if you're talking about people who are restricted in their abilities physically and mentally, it's really difficult to build an app. But I think where we have advocates and people who work on behalf of those individuals, then there may well be ways of enabling them to have the right protocols of access for data, etcetera, that makes it possible. And I refer to it, we’re in partnership with an enterprise at the moment developing a banking app for that very reason so that people we support with learning disabilities can allow others to access their bank accounts safely etcetera. So it's from a slightly different angle to how you ask the question. But I think from my experience in the last few years, fundamentally the issue is one of accessibility for people with limited ability.

Participant B: I think that's probably similar.

Noel Gordon: It's very helpful. Please go ahead.

Participant B: No, I was going to say I think we're probably similar, I can see Participant A nodding and I'm sort of nodding and you know, we work predominantly with some sort of physical disability, but predominantly with an older population. And if they use a mobile phone, they're using something like a Doro phone, you know, large buttons, easy to see. It doesn't really have that app capability. And there is. I mean, some of them do have an iPad, but I mean you wouldn't want to rely on them using that for anything. And I think that certainly of my own experience has been that anything that has too many gateways which you need for security is basically inaccessible to someone who really relies on something quite straightforward. So they need to be able to use a relatively simple password. They need, you know, maybe a four-digit digit passcode they can manage, but definitely not something with an exclamation mark and a capital letter and four other numbers. And I mean, I struggle and they're in a similar position and that applies to both younger and older people. So if they get past the hardware issue, I think there is an issue with how accessible that is and the issue, to be honest, none of our clients use the NHS App at all. And even I don't use it and I did do a little poll on my local Facebook group last night because I thought how I missed this. This sounds quite good, you know, and lots of people said it was quite good and they said, but the GPs don't always use it. It's not populated from the GP end so then it's not useful for appointment bookings. They did seem to like the fact that they could order repeat prescriptions. That seemed to be a good thing. And I thought, oh, this sounds quite handy. But when I've tried to set up online booking. Just turn my power on. When I try to book online appointments for my clients, I've had to register them using something like our general office address, and once I've used that for one client, I can't use it for another client. So this is a problem for me when I do online shopping because I can only register one Sainsbury's account and then if I set up separate e-mail accounts for the clients, they're not really the client. But I would have to set them up in their name. And then like there's an issue, isn't there? If you're representing as a client, but the client has no knowledge or capacity of that that situation, how do you do that? So I think third party access, that's auditable and trackable would be massively helpful. So if I could have one login, but I could manage it. I have a direct debit system that we use. I can see the clients, they can withdraw their access at any point. I can manually add them. That’s much easier to have those third-party protocols where there's the ability to make use of all of those resources, which would be massively valuable in this sector where we're cash poor, time poor, but just don't have the technology and it is not built for other users. It's built for kind of fit, enabled people that are able to navigate an app effectively.

Participant A: I think I would agree with everything that my colleagues have just said. Absolutely. I mean my cohort are ranging from 18 to sort of 60. Some of them have iPads, some of them regularly forget their passcode so we have to retain them for them. None of them have used the NHS App. They would absolutely be terrified of using anything like that. And I think the difficulty is whilst it would be a great tool to use and we actually have recently introduced care planning or E-care planning, which is fantastic and works really well. We are gradually trying to get the cohort of service users to use it, but again it needs to be in a very, very simplistic easy read format. Everything we do, we have to put into easy read format because they can't understand it and it prohibits them and excludes them from taking part in wider society because obviously if we're making this available, we need to make it accessible to everybody and not be a generic tool because at the moment it's very generic. And yeah, I think I would agree with what both my fellow people on the on the committee has just said.

Noel Gordon: Digital exclusion is absolutely one of the topics we're looking at and this is incredibly useful feedback because when you look back at the history of the NHS App it wasn’t really designed for the sort of settings that you are in or the complexity of the service user. And that by design, by accident there's created a huge swathe of people who are digitally excluded. And you as proxies for the service user are also digitally excluded. So I think some of the points you've made are extremely relevant. Just while Participant D has joined us. Hello, Participant D.

Participant D: Hello sorry I'm late.

Noel Gordon: Not at all. You might have had trouble dialling in, so thank you for persevering, and we've all introduced ourselves. Would you like just to take 30 seconds to introduce yourself too?

Participant D: OK, I'm a registered nurse. I run a nursing home in Nottinghamshire. We look after 54 people who predominantly are living with a dementia and have nursing needs. And we are trying to have systems that are all digitalized and we're paperless so hopefully we're achieving that.

Noel Gordon: Oh terrific, you might have just come in on the end of that conversation, which was question one around the NHS App and how it could be made more, let's say, relevant for social care settings. Did you have any thoughts you wanted to contribute Participant D to that question?

Participant D: I mean on the whole I use the NHS App personally. And I think the most difficult thing is setting the app up. So actually getting it and loading the information that you needed to load to get access. But after that it's quite straightforward to use. I'm not sure. In social care? I suppose I don't know with data protection whether we could have it, but if we could be able to access the records for the people we support so that we can make requests on their behalf, but equally we've got that with the care planning system we use is person centred software and with that we've got what's called GP Connect and obviously with the other aspect of being able to order prescriptions directly just online. I'm not sure what else we'd need really.

Noel Gordon: OK, very good indeed. Thank you very much. That's question one. I'm now going to hand over to Steve for question two.

Stephen Peckham: Thanks. Thanks Noel. I wanted to pick up something that we were talking about before, which was about that the issue which Noel said as well about exclusion because I think these sorts of issues are really important. And there is a sense about the way that we are moving to these kinds of interfaces. So I think what we're looking at here is you know, are there other kinds of interfaces or should we be thinking about other kinds of interfaces? And I think it's a double question. You know, are there other kinds of services which would help with accessibility or that there would be preferential things? And with something like the NHS App, are there ways that we might be thinking of making that accessibility easier? And I think there's a fundamental question underneath that which is that we're moving that way anyway. So you know there are, I think there are some quite challenging issues around this. And you've kind of alluded to some of these, but maybe we want to dig around a bit more. I was interested in the use of GP Connect and wonder whether other people use that as a more direct conversation, but it's not an individualized thing in the sense that it's related to [achieve]. So you know, are there other types of access that you find easier or that your service users or people living with you would find easier. I'm particularly interested in the learning disability frame because obviously there is a different kind of not only understanding but visual interface that might be needed.

Participant A: Yeah, absolutely. The visual interface is absolutely crucial. We have to, as I said,  translate everything into easy read every step of the way. And I'm very proud of what the staff did in terms of preparing our tenants and service users for the vaccine, the COVID vaccines, and it was a very smooth process and I had a staff member who was very much trained in photo symbols and widget and the documents she produced, the nurses actually asked if they could take it away with them - obviously it was protected by us because we developed it. They said they'd never seen anything so well informed to help our adults, who have all got an LD, to understand that it wasn't anything to be scared of. And I think we just need to be broader ensuring that we do have that inclusion. That's my big campaign at the moment - the inclusion for our adults.

Stephen Peckham: Anybody else? Yeah, Participant C.

Participant C: I think we've all alluded to technology and different systems that we’re using and this is again slightly aligned to what you're saying. I don't know what colleagues feel, but there is a little bit of fear in the social care sector that social care might be left behind or isolated in the digital march, and that's not because social care organizations are not progressing with digital platforms - and you know, we've all mentioned that we have a bespoke system that we've been designing with the developer for three years now, which has a link for an individual to their care plan to the NHS, to their GP, to the local authority - there's all that going on. But the question really is fundamentally, how does that type of approach, which is designed around the individual, to be person centred? How does that link into the integration program and the power that we all perceive exists in being able to support somebody inclusively, link into Participant A's point of whether they have a learning disability or not that they are part of a service provided by the NHS irrespective of who they are and that how they operate. I think there's a challenge there which might be slightly fundamental in as much as we tend to think of NHS rightly or wrongly as by and large being clinically focused, correctly, in many cases and social care, by and large, being focused on the social model and they are compatible in my view and continuous. And therefore, it's really important that we understand that. But I'm not sure we're anywhere near having technology that matches the two together cause the sort of things we build into our systems in social care are not perhaps always useful, and maybe I'll speak from ignorance, but don't appear to always be useful to our NHS colleagues, but we need information for those people to be shared with the NHS so that they could be properly treated when they need it.

Stephen Peckham: Participant D or Participant B, is there anything that you wanted to add to that?

Participant B: I agree with Participant C and Participant A. I saw you talking about the use of symbols and stuff. And when I used to run an oncology service, we had a whole separate workstream around learning disabilities and accessing that information and it was all to do with how you make that information really very simple and I'll come back and he's come to tell me that the internet telly’s not working, which is the problem we're having. And I think that the same kind of approach is actually really useful for older people and also for people who are not super tech focused. You know, people with early onset Alzheimer's, dementia, they're often very keen to be functional still and to be independent, and they desperately want that ability to participate and to be normal. And I don't know whether there's a kind of slimmed-down version of the app and those kind of technologies because actually they're left behind by it, digital tech like that. But they're also increasingly left behind by traditional routes, so if you tried to phone your doctor and there's four options, you cannot navigate that system, it becomes impossible. And actually they end up in a sort of health poverty because they can't access the systems that they need, even though those resources exist and they're trying to follow the traditional routes. So what's happened is as technologies change, the traditional route doesn't work for them and the [inaudible], so they are increasingly not able to get out and about, they can't ring someone on the phone, and they can't do it on an app, and they're completely lost. And if they don't access social care, who also can't use any of those systems for them, the only way to do it for some people, I end up writing a letter and physically walking it to the GP. And the GP told me the other day we don't take letters. How do you want me to put it in?

Participant A: E-mail.

Participant B: And they said you can put a request in via the website and I said no, I can't actually, it is beyond my capacity. You don't take a letter. I took my mum in. She has some clinical problems and the receptionist said to me - you can't have an appointment now, it's going to be two weeks before we load our next set of appointments up. So I said I need an appointment in four weeks. No, we don't do four weeks of appointments now, we do two weeks. And I said, so, can I request one? She said yes. So I wrote on a piece of paper and I handed it to her and I said in two weeks, please can I have an appointment. She said you’ve broken the system. That's not how it's supposed to work. But you still need those. You need to access those things, don't you? So by being in the practice, writing on a piece of paper to put in her filing pile for two weeks’ time, I could get the appointment I needed. But there was no other way to access it because there was no appointment available. And that's ridiculous. And it's only because I'm annoying that I could achieve that goal.

Stephen Peckham: Yeah. OK, Participant D. Did you want to come in there?

Participant D: I'd agree with everything that's been said. I think the often the biggest challenge for us is that we're not trusted with NHS systems. So clinical governance is often a reason why we can't do something but actually when you say, well, what's the issue around governance - that's the problem here - nobody can give you a strong answer. And so we’re not trusted in the same way that NHS organisations are, but you know, all of us have had to do.

Participant A: Yeah.

Participant D: There’s the DSPT toolkit and yet none of the NHS colleagues that I sit around the table with have actually filled it in. So when I say have you filled in this toolkit, they'll go ‘No what's it about?’ And I said, well, we've got to fill it in for our organization, but then they don't know about it. They'll know about aspects of data security. So I just think we're expected to jump through hoops. And to prove ourselves the [inaudible] is often unwarranted and I think that needs to be addressed while we're doing this work, otherwise it's going to continue to be a feature that comes up. I know it doesn't directly answer the question that you were talking about, but colleagues have already answered that.

Stephen Peckham: Yeah, I still think it's an important point and it does just raise a follow up.

Participant B: Yeah, it’s just a very quick point about the governance. So obviously there's quite extensive regulation now for care organizations through CQC and they're changing their framework for inspection, which is going to be much more linked to instant reporting and alerts and stuff. One of the issues is that social care is being inspected and regulated in a way that expects you to have complete capacity to manage the lives of your service users and to fully support them in all aspects of daily living. But there is no framework to do that alongside their medical needs. It's just not there, not with the toolkit, not with virtual wards - that I know we're going to talk about - the IT, you know, even things like a red bag where you are taking information in from care homes and stuff. It's archaic, isn't it? That what you have to do is write out a 70-page leaflet and stick it in a red bag that's neon for someone to find it, surely that's not the best thing that we could be doing in this day and age. It just seems bonkers and I think care organizations are struggling because they're being so heavily penalized for not having that insight and that oversight into people's lives and their well-being, and that doesn't feel like that's reflected in other parts of the NHS, and certainly not now that health and social care is considered to be much more blended. But I think having worked in both sides of it, I definitely feel like the poor relation on this side of the table…You know, even when we've referred to a GP, we've had confirmation we've filed in the notes that we've had the GP receive the referral and our CQC inspector told us it was our responsibility to follow up the GP to make sure that they carried out that action and that that responsibility sits with us.

Participant A: We've had exactly the same.

Participant B: And it's infuriating to have to phone like 10 times to find out. Did you request an OT? Because I can't go directly to the OT. I have to go through the gatekeeper service and I think that's where technology can be really useful in letting you track the path of a referral or an update, or to see information, but at the moment technology doesn't feel for me like it's there yet for social care.

Stephen Peckham: OK. I mean that also fits into just the follow up I wanted to make about some of this and thinking about access. Has anybody ever come and asked you, in all of this design for these kind of access apps like the NHS App. As far as you know, does anybody come and talk to social care about some of the difficulties that you've been expressing?

Participant A: No. No, absolutely not. But I mean, there's been some work done in Norfolk through NorCA. I'm looking at a subgroup where it's been gathering soft intelligence for the last three years and the information has been gathered, but nothing has moved forward and the information is probably sitting somewhere waiting for it to be actioned. But we've never been asked. I mean, one of our difficulties with NHS, the apps, when during COVID was once something had been recorded, people were ringing, wanted to speak to our tenants who didn't have capacity. And the problem with then saying, well they haven't got capacity, they can't talk to you, we will speak on their behalf. Well, we can't do that. So again it's that brick wall coming around us. But no, we've never been approached.

Participant C: I suppose we've tried to make it our business to go to certain conferences and meetings and speak on the subject and raise it that way. But the direct answer to your question is no. We've never been approached other than taking that approach ourselves.

Stephen Peckham: That's OK. That's quite useful and we're thinking about some of these things and I think Participant A's comments segway us into questions three Noel.

Noel Gordon: Yep. Thank you.

Stephen Peckham: Participant D, you wanted just to...

Participant D: Yeah, I wanted to just say that around digital technology, it's been providers of software tools that have been the ones that have talked to us. They're the ones that have come and said, well, what do you want, mention person centred software. But we've got what in the digital world they call a digital ecosystem where all of the systems we use, so PainChek, person centred software, Ascom, and Atlas Central all talk to each other. So whenever we do something on one system, it all filters through within person centred software. So you've got an audit trail of what's happened and you can…you only have to enter data in one place once and etcetera. But NHS colleagues have not, or even local authority colleagues have never asked us what we needed, and I think the other thing is, I've got a small organization but we've got servers we've spent thousands on digital technology and yet we got no help, no financial help to do that. Now that you know we're all hunky dory and functioning, there's now going to be support and we get nothing for, you know, for being at the forefront of this. You get no support and yet we've got systems there that can be evidenced. And I think there should be support because actually we’re often the ones that have paved the way for everybody else, we've gone through the pain barrier. We've fed that back, but there's no thanks or funding, which is what we need, particularly in this climate that we're currently in. And I'd like that to be taken on board please.

Stephen Peckham: Thank you, that also echoes something that came up when we were doing the workforce that people say that they weren't getting the support and investment for IT, that in fact companies and services were just doing it from their own resources. So thank you. I'm going to bounce it back to you then Noel to talk about whether COVID has made a difference.

Noel Gordon: Yeah. Thanks, Steve, and thanks everybody for a really rich discussion so far. I want to now switch gears slightly and move on to tools that would help you manage the care of patients in the home or in the care setting, and particularly thinking here about virtual wards, self-monitoring, maybe devices or apps or what's conventionally known as digital therapeutics, which can in a sense also provide access to online care at a time when the workforce is incredibly stretched. The NHS side of it, at least, and social care. So sort of a couple of questions around that theme of tools to help patients in a care setting. One, what do you use and is it useful? And two, what do you not have that would be more useful and you can take a supply chain view of that as well? So you know a doctor on demand may be a relevant part of that supply chain because having the data and the information that actually goes nowhere. The classic sort of last mile of cable problem isn't a great help to you. So yeah, how you fix that last mile of cable so the information goes somewhere that's useful? Is something we very much would like to have your thoughts on. Who would like to kick off?

Participant A: I think it's difficult for me to give a really quantitative response to this because we have a really good connection with our local GP practice. Our medication all comes from there and that all works really well and our tenants are very well known. The only thing that I think we need is that our service users are not very good at attending healthcare appointments and we would like them, we would like nursing, GPs, whatever to come out and do a collective. We're not a residential care home, so we fall through the gaps in a lot of areas. We’re supported living - the guys are meant to be independent, but they're not. They need us there and we are a 24/7 service. I think some of the more capable ones have embraced the technology. They've managed to self-medicate, they order their medication, they do a lot of it themselves. But that's only say 3 out of 30 and so that's the difficulty we face there because a lot of our other service users are older. And I think again it's accessibility. My guys would not be able to operate some of the things which I know are available in the wider community because if anything went wrong or if the system crashed and let's not forget we're in Norfolk where the Internet and IT and everything is pretty shocking because we're quite a remote county. So I'm not sure I can give them much more on that particular response.

Noel Gordon: No problem. I should have maybe given you two or three examples of the sort of technologies that could support the management of patients with comorbidities. So three that are gradually being introduced is diabetes monitoring, respiratory and AF actual fibrillation. So if you have tenants or patients which are subject to any of those conditions, then that's where a virtual ward or DTX might be helpful. Yes, Participant B.

Participant B: I was going to say for us probably not many of those things are helpful because this, for me, is where you come to the delineation between health and social care. So in social care, you have to be careful about what responsibilities you take, because if you start monitoring something, you're responsible for actioning it, but you're paid by the hour or by the package of care. So if you pay me for an hour of care and I use that care time delivering it, I don't have any other time in the package because the NHS is not paying me for travel time. They're not paying me for the cost of living increases or the fuel or any of these other things that are very boring to talk about but are part of that delivering care so from these examples I can see why they would be valuable to individuals, but to me, as an organization, I don't think they would be, and I think that for those individuals, unless they're quite straightforward to use, that they're not massively helpful because they require more administration than there exists support for. And also you need people that have a certain level of skill. So my dad has a pacemaker, he phones up and does something down the phone with it, they monitor it. That's great. He's able to manage that. I have some clients that use an insulin pump to regulate their insulin. It doesn't really need a lot of administration. Their wife can manage it. Great, perfect. The things that are probably most useful for me are around risk management, so really boring things like is someone opening the door? Are they going to go and walk themselves out in front of a car? Have they got dementia and they're going to go and wonder, is there a mat that they can step on that can trigger an alert for us or tell family members? That's probably things with a risk overtone. Are the things that are most useful for remote monitoring and social care? Because that's most likely what's going to cause harm and what you're going to get penalized for me.

Noel Gordon: That's very interesting. Great point. Participant D?

Participant D: So we've just done a small project with some funding from a Nursing Institute. So bearing in mind we’re a nursing home, I'm a nurse and we were looking at could we predict when people with complex needs were going to deteriorate and the reason we looked into this was because we found that the decline in our ladies and gents - so these are older people - were significant and usually it was being picked up probably about day two or three when staff would be saying you know for two or three days now they’ve been unwell and then it would be really obvious by using things like the RESTORE2 or NEWS or whatever tool that organizations use that we pick up that the deterioration was significant and then GPs would respond when we gave them that information. We decided that allowing people to deteriorate for two, three, four days was not acceptable so what could we notice before then. And then just to labour the point, these are people, many of these individuals are living with a dementia. And so when you are going to take their blood pressure or any clinical observations, they're likely to resist or push you away or refuse to have it done. So then we were looking at what technology out there can take these readings without the person being aware that they’re taken or without causing any distress to them, so there are various devices that may be able to do these things, but although we identified that yes, you could notice in advance that people were deteriorating and you could prevent the decline that we had seen, what we identified is we didn't have an algorithm that could be used within the digital technology that we use that would pick it up. So what we need to do is to find a digital RESTORE2 type tool that's going to pick up but not just on clinical observations. What we found is that unique to the person was the mode of their deterioration. So some people may have an increase in number of falls as they deteriorate. Other people might become more withdrawn and stop eating and drinking as they deteriorate. Other people may have more distress reactions, some become more hostile, more violent or resistive in their behaviours. And what we found is that people would experience the same mode of deterioration. So it was unlikely somebody who would as they deteriorated have lots of falls would the next time they deteriorate start to display behaviours. So there continued to be the falls that would indicate that there's deterioration. So that's what we're working on at the moment with the National Institute of Health Research to see how do we create an algorithm that's going to pick up this information. It's those types of tools that we want. Obviously, there's initiatives like hospital avoidance and things like that. Having this type of early warning system would be able to help us prevent this and it could be used in any type of care home. I'm not sure that people with learning disabilities, etcetera, are going to deteriorate the same way as older people with complex needs, so I'm not making that assertion. I'm not that type of specialist. It's just saying in older people that we were looking after this is what we're finding and we’re now rolling it out to other care homes to see if they're having a similar experience.

Noel Gordon: Super. Thank you very much, Participant D. That's very compelling predictive tools, algos and early warning systems. Yeah, much neglected in this sector. Participant C, did you want to come in with a final comment on this?

Participant C: Yeah, just a very quick one, Noel. And that is, where it does work for us, and I say that with the caveats - in agreement with what Participant B said about the risk profile in all of this and also who pays for it - is where we have people who are being supported in their own home with learning disabilities, who are palliative and at that stage where the contracting arrangement has been sufficiently robust, it's allowed us to manage that risk and we've had the AF stuff, we've had other pieces of monitoring equipment with the person and either the individual if they have capacity, may have chosen, or if they haven't, their advocate or whoever family would have chosen for them to live and pass their final time at home so we can see how at a very practical basic level some of those tools work. But I go back to Participant B’s point that it has to be correctly managed in terms of risk and in terms of cost, because a standard social care contract won't pay for that sort of work.

Noel Gordon: Excellent. Thank you very much indeed.

Participant B:  And can I just mention one thing. It was just to say firstly, I'm not completely heartless and obviously we do look after the people in our care. It's not just because we run out of money in the budget that we don't look after them. And secondly just to take one of the remote apps that would be really useful in an ideal world is somewhere that allows you to have open communication quickly with a GP or a DN and be able to WhatsApp a picture over. So the best most helpful people are people that I've made an external relationship with that I have a secret mobile number for and I can WhatsApp the picture of someone and say, can you get a pressure mat for them or something like that? Those relationships are really useful. Because now that everything is centralized in the NHS, you send your picture of someone to a general e-mail account, then they tell you it's changed, you have to go somewhere else, someone else sends it back to you and says, what did you want again? You send the picture again and it takes maybe five days for something that's going to deteriorate well within five days to beyond repair. And it's going to take six months to recover that pressure area, but you can't send a photo and get an answer quickly. And in this kind of technology age where people are used to that, we're missing a trick by not having that accessibility to visual information, I think.

Noel Gordon: Great point. Great point. Thank you, Participant B. I'm going to hand back to Steve, for question four.

Stephen Peckham: Yeah, I mean this question is primarily about integration and I think you've just started to open up that discussion, Participant B. Clearly not only do the service users get any kind of integrated care and are there platforms in which that can be kind of developed? And I think that's precisely what you're talking about, which also raises the other question. And I was quite interested, I think Participant D and Participant C mentioned issues of actually positive things about interoperability between different systems as well. So really that's what we're trying to, you know, other ways of providing care which enable that more integrated approach and to the extent to which social care has access or is able to be involved in those types of systems and care. Who wants to have a first bash at that. I mean, Participant C, you talked about developing your own system.

Participant C: Yeah. And I mean it's all positive. But I would say that it has been a struggle given that we work across the UK and Scotland as well, so there's a whole different set of things going on there, but we've really struggled to engage effectively and we've done it on all sorts of levels. I've had directors join local boards in terms of their advisory roles and that sort of thing. We've gone along to all the conferences, as I said before, we've done an awful lot of communication from our side to say we're here, we want to integrate, we're not scared of it. But we want to integrate for the person we support and what it means for them, and that's actually quite hard in a narrative sense and in a conversational sense to do that. And sometimes it's even more difficult to do that from the perspective of saying can we have an interoperable system, one that shares and I said at the start there is a little fear I think which says we may be asked for data or certain flows of money may require the sharing of data, which would be very useful from a clinical perspective, but may not necessarily help us in social care. And I think your suggestion is right that if we can find ways that answer both of those because they are concurrent, the one supports the other if we can find ways and we can design some of the add-ons and aspects of NHS data systems that allow that to happen and allow us to plug ours, whether it's off the shelf or bespoke or whatever, I think we we're looking at the real power of what we can achieve if we go that way. But if we're dictated to in social care and told, well, really you know this is the data we want from you because it's useful for NHS records and we're not too bothered about what you need, I don't think there'll be integration in the way that we feel needs to be.

Stephen Peckham: Thank you. Participant B’s just put up about the PASS system, which is one approach. Participant A or Participant D do you want to add anything here?

Participant A: I mean we use Access Care Planning and we can give all our families and the service users access to this which is great, but none of them want it. Healthcare or healthcare professionals haven't asked us for this information. We still have to do the antiquated cost hospital passport document and there's no sharing of information at all, which is kind of frustrating because it would be so easy to be able to give them access to use it and to have it up to date. It's a bit frustrating, but I think that we've certainly embraced it and we've got a group of staff and families who have embraced it but then getting out wider isn't necessarily something which anybody else wants to do. And I think that is a major issue because I don't think there's been any real approach to...we've got obviously different providers here today who all use different systems. If there was a system which everyone could use which was easy and it could be adapted for the client cohort as well, that would be a huge step forward. But obviously that would be a major contract which everyone would be wanting, wouldn't they? Because it would be progress in the right direction.

Participant B: You do need that integration though…

Participant A: Absolutely.

Participant B: …because you sort of need like PASS integrates with eight different rostering systems and like six different types of billing and invoicing. If you could have something that would allow you to link information like one of my current arguments with PASS is, why can't they set up some kind of centralized e-mail address that I can allocate emails into client records from? Because I emailed the GP, I get an e-mail back after and copy and paste it into the communications tab. It's not made for printing, you can't read it because it's got all that stupid confidentiality rubbish at the end and you know, so when you're going through your tracking, there's all repeat pages. And so the presentation of information as well as the integration is pretty important and the ability to pick out key themes and key sections. And I think that what you know, one of the troubles with everyone having bespoke systems is that that integration gets harder and harder, doesn't it? Because you've got to make more and more keys to fit one lock and where you look at somewhere like PASS. So they've built it around their experience of the sector and they've just done a refresh of it and they've made it very interactive. We've used three or four different providers and but by far and away they're the best in terms of usefulness, record keeping. But there's still a lot of stuff that they haven't quite got to yet.

Participant B: That they're waiting to get to. But I do think that's got to be the way of stuff, because increasingly, families are saying to us, how do I know when you've been? How do I log in and check? Is there an app I can use for it? And we're seeing people wanting much greater scrutiny and oversight of those records…

Participant A: Rightly so, yeah.

Participant B: And even when we have a CQC inspection and stuff, we're seeing people saying, like, can you give us six months of records and actually one of the problems for PASS is you can give them electronic access, but they don't print out nicely. And when I ask PASS, they said that's because we’re digital. We don't do paper. Unfortunately, no one told the CQC that so…

Stephen Peckham: Participant D.

Participant D: Yeah, I’d probably say something slightly different, cause within our system there's something called the relative’s gateway so relatives can have login. And we can tailor it to individuals if they've got power of attorney, then they can have full access so they can read everything. I'm repeating myself, but we're only a small organization, but every system that we use can talk to other systems. So we use a system called RotaCloud for planning our rotas of staff etcetera and staff can have it on their app that can integrate with the payroll that we use so it's great for me who's been used to doing paperwork copies of, you know, using the payroll tables to calculate pay to now be able to use software and just get it all done. So we found it really liberating. The only thing we can't do is communicate with any NHS in the same way - we can see what's there on the GP records. We can't write things. In the past we've had access to certain systems but again, we couldn't communicate directly within system one with the GPs. No GP practice could agree on what was the way that we communicated. If you did a task within a shared system, some GPs said, oh no, we use that for internal communication. Others said yes, do it via a task and if we e-mail it either goes to one person and then the receptionists are saying, oh no, it can take us several days to get through all the emails you need us to respond more immediately than that. And we don't want you to do that. So you're just going to have to phone. But when we phone, you can't get through for hours. I feel that this issue is with us. The issue is with the NHS and how is that going to change to be able to work with social care so that it's working for the people that we serve, not the other way round.

Stephen Peckham: I've just one follow up. I was in a meeting with the people from the Department of Health and I did ask a question, and NHS Digital, about whether there was a standard system around social care and they said yes, we set up standard guidelines so that any system that's developed will be able to, is that correct? Do you have this kind of framework? Yeah, you're nodding, Participant C. I mean.

Participant C: I wouldn't call it a system though.

Stephen Peckham: Right.

Participant C: There’s guidelines.

Stephen Peckham: Guidelines. OK, but not a clear framework that it has to do X, Y and Z.

Participant C: Yeah. Well, there is. There is a funded programme and I can’t remember the name of the organization, but there is an organization whose job it is to advocate systems that meet the framework. But it's all fairly new. I don't know if any of my colleagues can remember the name of it, but this is this is something that's been in existence for maybe two years or there about it. It's not compulsory in any way. So obviously, you know, people pick and choose.

Stephen Peckham: Right. I think we probably need to move on though.

Noel Gordon: Right. Thank you very much. Our last seven minutes. I'm going to try and conflate questions five and six, which is around data. And the ways in which data can be improved. There's sort of two aspects for this, as you would expect, there's primary uses and secondary uses and primary uses is direct care. Secondary uses are for research or population health management or NHS and social care planning. Building on some of the comments you've just made around not being able to write to GP records, not being able to communicate with GPs, and some of the response time for reactions from a request you put into the system. Maybe the most useful thing to do is to ask you what you would like, over the next 12 months, from a policy perspective, in terms of making this data world that we have more interoperable. So the idea behind it is that interoperability enables data to flow, as in we unlock the power of data as the phrase goes. For research, population health or direct care. Just talk a little bit about what you would like. What are the most important 3 things you would like to change over the next 12 months to unlock in any sense of that word, the way that you could use interoperability better?

Participant B: If I had one thing, it would be sorting out access permissions. Could there just be a standardized form across the NHS that if a client signs and sends back you can have the access to advocate on their behalf. Advocacy is so difficult to do because you need to have something like power of attorney and no care providers have that really, it's just not how we're set up. And so you're basically trying to explain that you're a helpful person and you're the person that does all the liaison, you make the referrals, the referrals have come from you, prescription request come from you. You ring up and you say can you tell me when you're going to see our patient? And someone says no, it's confidential.

Noel Gordon: Yep.

Participant A: Yeah, yeah.

Participant B: It's infuriating, and we consent. All of our clients are required to consent to their care plan and their treatment plan and if we're consenting them, if you give us a standardized form, we will do the consent work for you. We're doing it anyway, but you need to give us a form that allows us to access some of that information across either digital platforms or normal platforms. And the other thing is around GP standardizing their routes of access and things like how far ahead they're going to pull their appointments. So if you knew GP appointments will pull for the next month or six weeks. Then something like the app becomes more useful, but no one has time to go on through, like I've got I say 30 clients, maybe 30 different GP practices. I've got no way of managing that. In the end I ring them up and hope for the best.

Noel Gordon: Yeah. Yeah, terrific. Thank you very much. Participant B. Participant C.

Participant C: Very quickly, Noel, I think if the NHS could continue on its journey of system and platform design, but have a conversation with social care people and in a way to incorporate some of the person centred aspects, and I know the NHS is person centred as well. But we’re person centred in slightly different ways. So an active listening conversation between the two sectors or part sectors of understanding. I think because the NHS has the power to design in a much bigger way than we do in the sector. If some of the language and the thinking could transfer into that design process going forwards, it would set the path or clear the way for getting rid of some of the issues that relate to inoperability between systems and I think you'd find that support providers like ours would start to try and engage with that process more and ensure that anything we're currently working on aligns to that process. So I think a call for a bit more alignment in thinking and predesign.

Participant A: I think I would probably just add to what Participant B said in terms of it's got to involve the guys. It's got to involve the service users. They need to know what we're expecting and they need to know what they're going to be consenting to. And it needs to be far more transparent, really does need to be far more transparent and most of our guys like to get involved in providing feedback. We've got a service provision committee, half of them fall asleep in it, but the other half are quite willing to contribute. But they’re the things you have to contend with, but they at least feel they're involved in the being given the chance to say - we don't like this. Can we change it? Absolutely. They have to have that power given back to them because then they will engage far more.

Noel Gordon: Thank you very much. Participant D, did you want the last word on data sharing?

Participant D: I think we need to an easier way to contact GP surgeries than what we've got. We need to be able to flag up that we need something, even if it's direct e-mail. But you know, it's secure e-mail that they're going to have from us and it's not going to get lost against all the others. And then I echo what other people say. We've got to be able to get the consent of people, even if they struggle with capacity in some area. We've got to look at how we can involve people and get their views as best as possible.

Noel Gordon: Yeah, terrific. Look, thank you all very much indeed. In a few moments, either Steve or myself may be asked to summarize our session. Given we have 15 seconds to summarize it, don't be disappointed if we only pick up two things, because that's probably the max we’ll do. But rest assured, it's all being taped and recorded and Becky is going to do a good job of synthesizing it so it won't be lost in the ether. Thanks all very much indeed, Steve.

Participant A: Thank you.

Participant B: Thank you for inviting us.

Stephen Peckham: And I just thought, I think 3, three things that really do stand out from this conversation. One is about non-engagement of the social care sector in the whole development issue. The other, the second one is around have we got the accessibility rights for these sorts of things? And again, a discussion with people in social care would be quite useful. I think there's a third one which kind of is there, but hasn't been said really explicitly is investment support.

Participant A: Yeah.

Participant B: I think so.

Sept 2022