Written evidence submitted by Group 5 (Event 2) (DHS0054)
Transcript of roundtable event with members of the health care workforce held on Thursday 29th September 2022 for the Health and Social Care Expert Panel
Helen Patterson: Let’s make a start. The first area we’re going to be looking at is the care of patients and service users. The first area we’re going to be looking at is the NHS App, and the first thing I want to ask is: how useful do you or your service users find it, how easy is it, and can you tell us what you use it for? So Participant A, shall we start off with you?
Participant A: I support people with dementia and their families. I have to say the app is perhaps not as widely used amongst people with dementia or even the carers. I can understand why people with dementia might not engage with the app and use it, but carers I thought perhaps would but not so. I think initially at the height of the pandemic where it was more popular, and then no so [much] now. I was talking to [someone] the other day, and in terms of the things you could use it for – medicines or scripts – well, you can’t necessarily see the person you’re caring for and you might want to have conversations with.
Helen Patterson: OK. What type of thing do [the carers] use it for?
Participant A: I don’t think many were using it. It just didn’t really sit as something… The use of apps for people in their 70s or 80s perhaps isn’t quite as common.
Helen Patterson: Do you think there’s anything we could do to help them use it?
Participant A: If you could link it so they could see the records of those cared for as well, that could potentially be helpful so that you could manage appointments and medicines for them, rather than having to have two separate logins.
Helen Patterson: OK, that’s useful. Shall we move over to Participant B?
Participant B: Hi. I work with families who have children with complex disabilities. Our service users don’t really actually use the app because it’s just too complex, but they do sometimes because it is more flexible. Personally I really like it because of my speech impediment, it’s actually a lot easier just to organise things through an app rather than actually talk to someone directly.
Helen Patterson: That’s really good to hear, and I’m glad it’s useful. Can I ask what services you use the app for?
Participant B: Generally just routine appointments at the hospital. But it’s not always actually linked up; some appointments are on it [the app] and some aren’t, which is a bit frustrating. But I find it really helpful.
Helen Patterson: Let’s go to Participant C next
Participant C: Regarding myself, I haven’t used it that much because I haven’t had any need to; I know some people have. However, picking up on the point made by a previous representative, a lot of people in my age group – and I’m nearly 70 – aren’t that comfortable with this type of technology. In fact some of them don’t even use this type of technology at all, or email, and so on. I think very often these are the people who have the most healthcare needs because they are in an older age group. I think to get it used more widely there is going to have to be some way of providing support for them, or encouraging them to use it on a really big scale. But I personally do think this is a worthwhile idea and I think it can bring great benefits if it is used properly.
Helen Patterson: OK, thank you. Participant D, would you like to talk about the NHS App?
Participant D: I think the issue with a lot of these apps is they don’t actually connect very well together. I have one app for my GP, I have a different app for mental health. There isn’t one app. It’s like the RiO system in some ways. When the RiO system was originally brought in it meant that no matter where you went in the country your information was there for whoever to use it, but actually that never materialised because half the trust never signed up to the spine, which meant that your information you again had to repeat and the RiO records had to be requested. So I think we’re going into more apps and technology without actually thinking about how all of this connects up. What is the point in having three different apps for three different things? Just thinking about my older colleagues and service users, it’s bad enough having to use one app, let alone having to use four different apps for four different things within your healthcare. Currently I use one for my mental health, I have one for my autism, [and] I have one for my GP, and that without thinking of the other apps that people might have to use. I think again we’re coming up with another bright idea for an app, but haven’t thought through the process of it. If you think about RiO, it was designed originally so that every trust was connected together so it didn’t matter which A&E you went to, which place you went to, your information was there at a click of a button with a smart card. Actually that’s not what happened. Six years down the track, if I go to a different trust I have to request my records to be able to view them. If you go to A&E they are not doing that because it takes between 12 and 48 hours for your records to be send down to the system.
Helen Patterson: Yeah. I think integration is going to be quite a big [part of the] discussion to be honest. Can I just ask, when you said you were using a mental health app and your GP app, what type of things are you using them for?
Participant D: My GP app is so I can request my medication and – well I used to before COVID but now they don’t do it – to request appointments, but you now have to phone a receptionist for an appointment, and to view my basic medical records. Then I have my mental health app which allows me to review my care plan, my safety plan, my risk plan, and those types of things. Then I have an app for my autism which explains my autistic needs and what those mean. But if I’m in high distress that means I have three different apps to show people to get the things I need. Then you think about our older population or our young population, actually that’s a lot of apps to have and all we need to do is connect these up. I’m just hoping this isn’t going to be a case of another smart app, and actually three weeks or months down the line actually it’s pointless because it doesn’t connect to anything
Helen Patterson: The Government’s commitment is on the NHS app, with 68% of the population having the app by March 2023. We’d also be interested in how the app is used other than numbers who are signed up. It’s how it’s used…
Participant D: We can say the same for RiO. So they had an aim within three years to have every trust, every GP surgery, aligned to it. We’re now six years and however many months down the track and actually only 2% of trusts are aligned to it as an open forum, and nobody else is.
Helen Patterson: OK, that’s really useful. Thank you Participant D. Participant E, anything to add?
Participant E: In terms of navigation it’s very easy to navigate. However, the only really focal point of using it is for COVID stuff. There is nowhere else that captures it. For that it was really good; it was new, it was unique, and there was nowhere else to go. But for anything else… I use it only for repeat medication and nothing else because it’s a quicker way to get in. But my family, my wife, do not use it. She’s familiar with the GP website and therefore she relies utterly on that and is comfortable with that. Of course the downside is that there are no hospital records on my NHS App, and nothing from the hospital comes through on that. Even the information on the NHS App, it’s a bit hard to understand from a patient point of view, it’s very much designed from a clinical point of view. You have to look at other NHS or non-NHS websites to understand the clinical terms that they are using.
Helen Patterson: That’s really helpful. I’m now going to move on to the next question. People might not use the app but they might use the online services of the NHS, and it would be really interesting to know if people are using the online services, and if they are not, why they aren’t doing it. Is it a question of accessibility, or another reason? Participant B, do you want to go first?
Participant B: On the online services it’s not something that I am familiar with, but it is something that I would be interested in.
Helen Patterson: So if there was something there useful, and there was the help available, do you think it was something that you would really want to use?
Participant B: Yes, definitely.
Helen Patterson: That again is very useful, thank you Participant B. Participant D, other online services?
Participant D: I think again, as I said, if it connects up to everything that it needs to connect up to then you’ve got those services there that can filter into that app. I work in mental health and I work with a lot of service users, and I think a lot of the paranoia around these apps is [around] who is controlling these apps, where the information is, whether it is accessible, if it is going to be hacked, how are they going to make sure it is secure if my phone gets stolen and if anyone is going to be able to see my data. I think if there was a way of going, ‘this is the be all and end all, and this is how it’s locked down, and these are the security features,’ you may get more people using it for mental health. We need to think about how they all connect together
Helen Patterson: Do they feel the same way about online services as they do about using the app?
Participant D: That’s what I mean. Again where is that information being stored? Even with the GP one, with that for example I’m like who is managing that app, who puts information into that, where does it feed from? There’s no that much information about this app to know where the information is being filtered from. Who holds this information? Is it being held in the EU or is it in the UK? Is the server open to being breached? We all know the NHS has a good track record of allowing people to hack into stuff, so is it safe and secure? Especially around mental health there is an awful lot of stigma around that, and the wrong information going into the wrong hands without having some back story to it can be really quite dangerous.
Helen Patterson: We’ve talked about the app, but I’m just now interested in the other online services accessed by a computer rather than an app. Do people with mental health issues use the online services or do they just tend to use the app?
Participant D: It’s more the app. It would be our older or younger population that would have access to online because of our in-patient units, but overall it is the app which is used. I don’t know many of our people that have PCs and desktops anymore; they have tablets and iPads.
Helen Patterson: I think you’re probably right. My son is training to be a mental health nurse so I’m very interested in what you’re saying…
Participant D: So when we did a poll during COVID, because one of the things we wanted to do during COVID was understand how people felt about different things, how they were getting treatment and appointments, and one of the things we surveyed was around technology finance, if you like, the poverty around technology and who had what, where and when. We discovered the vast majority of people relied on their mobile phones. They didn’t have tablets or laptops; it was always mobile phones. I think it worked out something like 86% only had their mobile phones. Other people had tablets and laptops. Because actually that is where tech is going now.
Helen Patterson: That’s really helpful, thank you. Participant A?
Participant A: I guess it backs up what Participant D was saying in some ways, because I think that for people I would work with that laptops – not desktops, but laptops – would be preferable, just because you’ve got keyboards, you’re not using a touchscreen, so that if you have any dexterity problems you’ve got an advantage that way well. So I would concur with that. But I still don’t know that many people are using it for anything other than management of prescriptions, I think that’s probably where it would sit most commonly, or potentially booking appointments now I suppose, trying to book and manage appointments.
Helen Patterson: What else do you think people would like to be able to do on their laptops? What would encourage them to really use it?
Participant A: From my end it’s about living with dementia, access to support and seeing some information. So if that was in one space… I’ve been doing some work with My GP, which is another app about how you put information on there so if someone searches ‘mum with dementia’ you get some good quality advice and an ability to book an appointment with a specialist to give you some advice around that. I think that would perhaps increase usage. You’re still going to have massive health inequalities with people not using it, not having access, not knowing how to do it, and they are potentially not going to have access to support that could be beneficial.
Helen Patterson: Thank you, really helpful. Participant F?
Participant F: I’ve been looking at what we have got in relation to this… we have a similar viewpoint to that around people affected by dementia. Traces of things that I’ve seen are a concern about how many people are online. That links to how many people are living out in rural areas and having good enough internet access, having the ability to get the devices; a reliance on the family network to get the digital skills. Then thinking about those who don’t have that access and how they are going to get those skills, to actually get that support. This is a big question, it’s about what is the right way for getting digital skills, digital support for different people. Peoples’ preferences are really quite different as well. It can’t be assumed that everyone wants the same kind of support to get on to the app. Some people just don’t know about it, so they just don’t stand a chance of really accessing things because they just aren’t aware of it. I don’t know if that’s because they’re missing some information that has been given to them, or they maybe they aren’t able to recognise what that information looks like when it’s a web address that might be obvious for people who are online but not so clear how that’s being communicated. I think that has to be addressed first of all, how it is actually communicated and what actually can be done to get online. What are the services that are online? There’s that step from communicating: from basic communication that goes straight to digital communication and there’s no go-between. That’s my personal experience to be honest. There’s no go-between between nice, basic language that leads you on to understand that you can also do this on an app. Usually they say, ‘here it is,’ and then there’s a web address and it’s not really clear that they can do A, B and C on this, and that is the incentive for actually doing it. That communication I think is really unclear, and I think that is what is probably leading to people not knowing what they can do online.
Helen Patterson: That’s really useful, thank you. Let me go to Participant E and then Participant C.
Participant E: To answer your questions, the only other apps I use are the GP app, or if I go to Google and start investigating a problem there. To be fair, the NHS comes up right at the top but often it goes to other [websites] and that’s a bit of a problem. The things I would like to have through an app are things like… and I think this is a real problem because the pressure is on GPs; it’s not an app problem but a GP problem. One - where you’d like to email the GP regarding a problem, they will accept a non-critical problem in emails but they will not accept clinical emails. I can understand their point of view but sometimes you would like to email. Two - also to book appointments, again they prefer to use telephone. So the restraint on offering these services is lack of resource at the GP end, and the same with hospitals as well. That’s a real problem. I do think that if we are going to move anything into the NHS App it has to provide a benefit. It could be a single gateway, but unless these [other] websites are available it’s not going to be a killer app. I do agree that the communication of what is available through these apps is really, really poor, and again I think that’s a reflection of the pressure on GPs and hospitals. It's essential to communicate to members what apps and websites are available and particularly what they can do. That puts a demand on the admin resources of GPs and hospitals...my wife is on a GP surgery patient participation group and she’s continually complaining about the lack of communication. It’s a real pressure on the NHS administration system.
Helen Patterson: On the NHS website, do you use that at all Participant E?
Participant E: I do if Google sends me there. Traditionally you would Google it and come round and end up at the NHS website, which is very good. But of course the NHS App is not yet a native way to do all of this stuff, it’s not the single gateway and it’s not presented as that. Because it’s got all of these limitations that we’ve spoken about, people will go to… Google has a much quicker response, and is a conduit, if you like, rather than the NHS App.
Helen Patterson: Ok. Participant C?
Participant C: Apart from the NHS App, I would also mention at this stage the NHS COVID App which I did use a lot during the pandemic, and I found that very helpful for getting warnings and logging test results. I think that’s a positive from what I’ve heard from other people, [what] they’ve said about that specific app: the COVID App. So I found that very useful and helpful. Other online services that I and others have used… I’ve used the Zoe App – I don’t know if other people have heard of that – I found that very helpful as well just to log your condition and be able to get a test on that, which fortunately turned out to be negative. So in terms of other apps, the NHS COVID App and Zoe App I found very useful and helpful. I would definitely say there is a role for these things.
Helen Patterson: Good, thank you. Participant D, back to you.
Participant D: Mine’s just a really quick one. There’s also a cost element as well. Quite a lot of our users are on pay as you go phones and stuff like that, and actually going online to use the app costs money.
Helen Patterson: Do you think that’s discouraging people from using it?
Participant D: I think some of our people, yeah, because they would rather spend money on making calls of whatever than looking at an app.
Helen Patterson: That’s useful. Accessibility is something of a concern, thank you. Can I just move on? Compared to before the pandemic, how have online services and other technologies changed the experience of health and social care? Shall we go to Participant A first?
Participant A: In terms of dementia services it’s really tricky. We’ve had conversations about initial screening being done online for people, and actually that’s not something that’s going to be possible in terms of dementia services and diagnosis. I can’t see at all how that’s going to work. I was also talking to a daughter the other day whose mum had requested a GP appointment, an online appointment that would be sometime between 9 and 1 o’clock. The daughter doesn’t live with her mum and she’s like, ‘how do I facilitate that for Mum? I can’t tell mum to be there with the tablet to pick up the call from the GP trying to Zoom call her,’ it’s just not going to work at all. So the daughter had to take the morning off work to go to her mum’s house, to use her mobile data all day because there is no internet to try and be ready to receive this call. That’s not a feasible way to expect people to be able to manage their healthcare when you’re already struggling and there are other challenges. It goes back to what I was saying about health inequality, it’s about how people afford the service, access the service; whether people have a learning disability; if they have no Wi-Fi signal and you have dementia and you’re in a farming community, how do you access the support that way? Whilst it’s all well and good where everything can be online, it’s not perhaps actually going to work for everybody everywhere.
Helen Patterson: Participant B, do you think things have changed before and after COVID in the ways these things have been used?
Participant B: I do. And I think like Participant B has mentioned there are pros and cons. It actually can be very helpful not to have to go to a surgery if it’s cold, if you’ve got to get transport. But as Participant A said, if you’re given an appointment and you can sitting around waiting. So I think it’s got to be treated like face-to-face appointments if you’re going to do it online. Also, from a personal perspective, if it’s actually my GP who knows me and knows about my speech [impediment], that is going to work better than somebody I haven’t met before. Often face to face is easier just because you’ve got non-verbal communication to help as well. So I think it’s OK; I think it’s a really a positive and should be taken forward [along with] face to face, telephone and email. But it shouldn’t be the only option.
Helen Patterson: Thank you, that’s useful. I see what you mean about going to the GP when it’s cold and sitting in a room full of sick people. Thank you for that. Shall we go to Participant D now?
Participant D: I think for me there has to be a balance. During COVID, one thing it did highlight was the loneliness people felt, and actually getting to go and see their GP and health practitioner, that was probably the only person they would see for days or weeks. So I think we need to find a balance between it, and I don’t think there is a balance anymore. I think we’ve gone too far the other way now, that everything has to be done online, or done via Zoom calls or [Microsoft] Teams meetings and stuff like that. We’ve lost that balance. Well, we never had that balance, it was always that you had to turn up face to face, and through COVID is was that everything had to be done online where possible, and now we’ve not found the balance, we’re sitting too far at extremes. I think especially for those that are elderly and those that have mental health issues, quite often it’s really intimidating to do things online. For mental health, for example – and I’m sure it’s similar for dementia – you need to see that person’s body language, you need to see how they move, their facial expressions, and you can’t really do that on Zoom. We don’t have a balance, and I don’t think we’ve had it right for a long time.
Helen Patterson: That’s useful, thank you. Participant C?
Participant C: Just taking up Participant D’s point, I would agree with you. In one sense it’s good that there is, certainly since the pandemic, I think more people are aware of these digital services, and certainly more people are using them, which is a good thing up to a point. But I would echo what Participant D has said that for some people that is a major disadvantage. Certainly in my age group, there are a lot of people that don’t use this technology at all. There are lots of others who have great difficulty in using it, and for some people it’s still essential to have face to face contact.
Helen Patterson: OK, thank you. Participant E?
Participant E: Our GP offers very limited additional services. As far as I know they don’t offer Zoom at all… [inaudible] telephone calls. In fact the hospital hasn’t changed at all in terms of what services the provide via web services.
Helen Patterson: Thank you… so we’ve talked a little bit about the integrated care of different teams that can use and share the technology. Does anyone have anything more specific to add on that before we move on?
Participant A: Could I add something? I was at an event this afternoon with the King’s Fund and we were talking about interoperability of digital platforms, and one of the things they were talking about in that was how, for example, care homes don’t have access to records, so they can’t usually access a record until a nurse comes and sticks a smart card in, and then they can see what is on the databases. But of course people travel, people go to see their relatives at the weekend – they might live in Devon and you normally live in London and they suddenly get ill – and those notes aren’t found. Somebody can be in a hospital needing treatment and access to their records, their notes, their care plans, and if all sorts of things. All of these are lost and don’t go with [them]. The other thing as well that carers tell me a lot is that they will do a carers assessment as part of the course of the assessment to see what their needs, which then gets repeated again and gain. Whilst I would always advocate for it to be repeated a few times – because of course needs change – but not with the frequency that people are having to because the systems don’t add up. Even in terms of dementia screening, I’ve known people present in A&E and go through a basic dementia screening even when it says Alzheimer’s on someone’s record. So there’s something there around making sure that people can access notes, and that they do join up. I know we’ve been trying to do this in health and social care for…
Helen Patterson: … goodness knows how long. Would anyone else like to add anything before we move on? Participant E?
Participant E: I think this whole question of integrated care is really poor. I live on the edge of a county and my village surgery in face is part of a surgery five miles away; the hospital is ten miles in the other direction. They do not share any data whatsoever. My wife has got 71 documents in her NHS App but she can only read two of them. She’s wondering what the other 69 are. It’s a technical problem around how you actually bring that data into files. It is a real problem.
Helen Patterson: Participant C?
Participant C: Very briefly I’d like to echo what Participant A and Participant E said. I’m not receiving care at the moment, but I know from other people that what Participant A and Participant E described is pretty typical. So I would just endorse that because it does need to be said. At the moment it is non-integrated care basically.
Helen Patterson: Thank you, that’s very useful. Moving on, we’re talking about the health of the population, but in particular about the research which is sometimes needed to help improve the health of the population. In your opinion, how can the NHS help patients and service users feel more comfortable about sharing their information for research and innovation? Participant C?
Participant C: What I think a major issue is [that] people are concerned, as several speakers have already alluded to, that their information isn’t going to be secure, [that] it’s going to be hacked in to, and what’s the point of getting involved with it in the first place. Those are the only two points I would make.
Helen Patterson: Participant E, you’ve got your hand up.
Participant E: The one way I did think about… people don’t like sharing all their data, and I wonder if people could be offered to share selected data. Obviously people, particularly with mental health, there might not be things they want to say. Why does it have to be complete information rather than selected information that you are prepared to share?
Helen Patterson: Can I check, Participant C and E, before I move on to the others, do you know if service users are opting out of this?
Participant E: I’ve heard of some people that are very, very… even a member of my own patient carer network said she was not going to share her information – very intelligent person, IT masters graduate – [but] she was really nervous, and I’m trying to find a way around it. Personally I would share everything, but some people don’t want to share everything. So can it be selective?
Helen Patterson: Let’s move on to Participant D next.
Participant D: In my trust we give options for the data to be shared, and why it needs to be shared. So what we do is say that we’re running this program, we need data about this [and ask if they] are happy to share data anonymously for this piece of the project. What we don’t do is just go, ‘we’re just going to share it,’ but we don’t say what or why or how it’s going to be used. I think if we did share why and how it was going to be used, and give people the option of knowing of knowing that. What we tend to do is not give enough information and then wonder why people don’t want to share stuff. When I was told that on the RiO system your information needs to be shared – for what reason? Just because it needs to be shared? Well then you’re not having it. Tell me why you want it and the likelihood is that I’ll probably say yes. But you need to tell me what you’re going to use it for and how you’re going to use it.
Helen Patterson: Do you think if you set out why and what, the security would still be an issue?
Participant D: Hopefully not in our trust. We often do training and research projects around medication or side effects or what different therapies are like and how you work those, and because we give service users and carers that information about how it’s going to be used, because that conversation about the data being secure is part of that conversation, actually more people are willing to sign up to it.
Helen Patterson: Thank you. Participant A?
Participant A: Just to echo… I think some of it is the ‘why,’ and what is the meaning, what are we going to get out of it, what difference is it going to make in terms of getting involved in research? But I do think in actual fact that could be done really well online, because another barrier used to be travelling somewhere or the time commitment and what that might look like. So you could very easily imagine anonymised research being conducted online. So then you take away that barrier of, ‘what do people know about me.’ But it has to be meaningful, and I suspect many people who are involved in research studies that COVID stopped were left feeling very frustrated because it wasn’t well communicated, it wasn’t well handled, it was just a but of a void all of a sudden. When we speak to callers we always ask them if they want to be involved, are they willing to be involved in research, and there is still an apprehension around doing that. People often say no because they are too busy, too stressed, they don’t really know what it’s for, and we can’t really say what it’s for because we don’t have the specifics of the study that we might be linked somebody up with. So I think there’s the potential for that to be made easier for people to engage with.
Helen Patterson: Thank you. Can I go to Participant B next?
Participant B: To carry on from what’s been said, around people actually understanding why the data is going to be collected and that making them more likely to give it. Personally I’m not concerned about security at all; I haven’t any huge secrets. I think it’s going to benefit other people, but these benefits need to be explained to people. I think it’s going to be a gradual thing. Older people are possibly slightly more wary and it’s going to be a much more gradual process, where younger people are perhaps more open to sharing information.
Helen Patterson: Thank you. Anything more on that particular question before we move on? No. The next set of questions are on cost and efficiency. This is [about] accessing healthcare at home. Does anyone have experience of accessing healthcare at home, for instance blood oxygen level monitoring or portable digital devices, etcetera? Participant B, do you want to come in first on that?
Participant B: I personally don’t have any experience of home care. I’m actually quite healthy so I don’t need it, but I think if the option was there then I would definitely take it.
Helen Patterson: Thank you. Participant C?
Participant C: I haven’t used any of this technology at home but I have heard of some other people who did use oximeters when hit by COVID, and they said they found it very useful. But that’s really anecdotal evidence. So I would say there is a lot of potential here but I'm not really in any position to comment at any great level about it.
Helen Patterson: Have you or any of your service users had experience of people coming to your home with portable health [equipment] to save you going off to the doctor’s?
Participant C: No.
Helen Patterson: Participant E, do you want to add anything to that?
Participant E: The only experience I’ve had during COVID [is that] I sent photographs in. It was very much a one-to-one service; they offered, I applied. I couldn’t initiate it as it was very much GP initiated; I would make that point. I would raise a question: my son used to be on kidney dialysis, and in the middle of the night he had to phone to get any kind of support. I’m hoping there are much better digital tools now to help people like that who are self-caring, who are effectively self-treating. Fortunately he’s had a second transplant, but I’d be interested.
Helen Patterson: OK. Participant A?
Participant A: I think in the dementia world we’ve had a massive increase in technologies that are designed to keep people at home, in their own homes, from all sorts of things like [Amazon] ‘Alexa’ which can be used to tell people when to take medication; to Dosette boxes that call out to tell you it’s time to take your pill; through to a conversation about toilets that can tell if the person using them has a urine infection.
Participant D: I love my Dossete box, it does call out to me three times a day to take my medication. I adore it.
Participant A: Yeah. There are all of these things that have really made such a difference, and the quality of someone’s life and the ability for them to stay at home safely… these are all advances in technology that have led to these changes. So they are there and they are happening. Certainly if I think about people with dementia, often they will be living with comorbidities. So there’s so much scope and potential there, and [people] want to be in their own homes. Some of these, like the toilet I was mentioning, or the kettle that monitors how many times it has been boiled to tell you how hydrated somebody is…Of course there’s a fault there, because what if someone boils the kettle and doesn’t have a cup of tea, or doesn’t drink it? But there’s so much going on in that space, I think it’s been tremendous the changes and the advancements…
Helen Patterson: Is there anything not being developed which you think needs to be developed, or which could be helpful?
Participant A: I think [Amazon] ‘Alexa’ is going to be, and it’s in development already. I think the home systems that allow people to ‘Zoom’ in and out of peoples’ homes, I think that’s potentially going to be really beneficial. People wear pendants around their necks. If you fall you press the pendant, but actually if you fall and the pendant is on the side that’s no use; but if you fall and you can say to ‘Alexa’ to call an ambulance, then there is the ability to do that. I think that would be really useful and beneficial providing you’ve got the internet.
Helen Patterson: That’s really useful, thank you. Participant D?
Participant D: There is lots of technology in [my] house. I’m autistic and I live on my own, so my family do use my systems to be able to check in on me. If I haven’t spoken to them in two days, sometimes they would come to my house ad start talking to me, which has often freaked me out before now. But there are flaws to this technology, but I just think again it’s about connecting all of that up. Let’s speak to these systems and on the app have it so that you can set up a routine that people can then use. Again, for me it’s about connecting everything together instead of having lots of different systems.
Helen Patterson: Is there anything in particular that you think could be developed to help, apart from the connection?
Participant D: I think just understanding the different needs, you know. Not one size is going to fit everybody. What works for me doesn’t work for some people, like some of my colleagues that have autism. We’re all different and we’re all individual. Although some things will be the same, we just need to have that ability to be flexible.
Helen Patterson: Thank you very much. I think we’ve covered the last question about how much technology is helping people in the home, so if people are happy I think we can move on to the final question. Then we will have a wee bit of time at the end to talk about anything else people want to add in general. So we’re moving on to workforce literacy and the digital workforce. We’ve covered question [number] eight… so the final question is: many government commitments focus on growing the NHS workforce, and that includes the digital workforce; in general, how well do you think the NHS deals with technology and digital? Participant A, do you want to go first?
Participant A: I’m a nurse by background. When I trained to be a nurse we did not use computers; we wrote paper notes and signed them. We spent a lot of time writing paper notes and worrying about them, making sure they were correct, and now of course that has changed and we’re now using computers for everything. The worry with that for me is we’ve perhaps lost some of that patient touch, because we’re very obsessed with making sure our computers are up to date, that our computers have got the information they need, our bosses have got the digital information they need, and I personally find it really frustrating when I go to my GP and they don’t look at me because they’re busy looking at the computer. I get why – and they’re got a finite period of time, they need to get the next patient through the door – and I understand all of that. But I think there’s something about ensuring that we don’t forget to occasionally move away from the computer and look holistically at the person and situation in front of us. We talked earlier about how long we’ve been trying to integrate services and systems, and I think there’s something about things that look shiny and look as if they’re going to fix loads of problems and cost lots of money, but they don’t actually change anything.
Helen Patterson: Is the training good?
Participant A: No, not really. I think there’s an assumption… It’s interesting because nurses aren’t digital natives – we’re good at looking after people – but not necessarily digital natives. But having said that, a lot of our work is online and a lot of our personal lives are online these days. So it’s a bit of a juxtaposition perhaps in terms of… the nurse training does not address these systems, you have to learn how to use them, or a percentage of them, to do your job. I think that’s all anybody knows, is a percentage of the capacity of a platform.
Helen Patterson: Participant D, you’ve got your hand up.
Participant D: I don’t think our clinicians are taught how to use any of this, and depending on which trust you go to, the system that you use then depends on the trust’s usage of that system. So again I think we don’t use the same system. GPs have their system, primary care has their system, mental health have their system. In the midst of that there are a couple of odd organisations that have their own little system, and that’s then. That’s without [even] going to localised areas where again there’s probably a different way of doing things. I don’t think we give enough training because actually we have too much to train on. As you can testify, Participant A, being a nurse, you can spend about six months just learning how to use one system correctly and properly.
Participant A: And then, to be honest, you would learn it and it would change anyway.
Participant D: Then the internal system doesn’t like where you’ve placed care plans and wants you to move them, so you spend the next six months learning to move it again. It’s the same with everything, we move on so fast that we don’t give everybody time to catch up and build a set of skills before they have to learn a new set. The amount of nurses I know that have never been taught how to use a spreadsheet, for example, or simple technology, let alone going in to use systems and apps and other types of databases.
Helen Patterson: When you say we’re moving too fast, is that the staff of the technology moving too fast?
Participant D: Technology. We don’t give time for technology to settle to work out how we fix it. One system changed nine times within a year because people had an issue with it, but instead of trying to figure out how to fix the issue we change the whole system around that issue instead. [A nurse] will do a shift on a ward, write some notes, and actually that whole system changes three days later because a senior manager has decided it’s not quite functional. But they haven’t given people a chance to wear it in. It’s like a new pair of shoes; you have to walk in them for a few days for them to get comfortable. It’s the same as using technology.
Participant A: Can I also just mention that some nurses work on several different platforms as well, and you can't cut and paste. You might have to enter notes on all different platforms repeating the same thing because they don’t join up.
Participant D: I had to do that today on five different systems, an interaction with a user on these different systems. I found out today that you can’t cut and paste from one system to the next, it won't allow you.
Helen Patterson: That’s really interesting, thank you. Participant E?
Participant E: Yeah, really there is no integration at all. There is no plan to integrate systems, no plan to integrate data. I find it amazing there is no common taxonomy on drugs across the NHS; there in no look and feel, which is why people jump from system to system with no terminology. Part of this is because I can’t find an owner in the NHS. Who actually owns the topic? Of course it’s all devolved down to hospitals and GPs. What is the incentive for a GP or hospital to actually introduce a new system, particularly one which is similar to somebody else’s? They are left on their own to select systems, to select definitions, to select ways of working. If you’re going to have an integrated system, someone has to set the standard… this is going to be clunky but at least it makes everyone across the system – healthcare workers and even the patients – totally understand and be confident in standard integration across the system. That is so fragmented at the moment. As you say, workforce transferral from one system to another, the look and feel may be totally different, the terminology may be totally different.
Participant D: The acronyms that are used across the different trusts…
Participant E: Absolutely. This is not an integrated NHS system at all.
Helen Patterson: Participant C, do you want to come in?
Participant C: Only to endorse what other participants have said so well. This is a story I’ve heard so many times, but I do want to reemphasise it. This is something that we really do need to flag up to the Select Committee as being what I would say a top priority to improve on, definitely.
Participant E: Can I just add one thing so it’s not missed? I think someone in the NHS has got to dictate something to say this is how something is going to be defined or whatever. But it’s all disowned at the centre because it’s left to trusts and PCNs to cope with it on their own.
Participant D: If I can just reiterate that, it’s like the RiO system. The RiO system is supposed to be a centralised thing but it’s not. It’s owned by different trusts.
Helen Patterson: Can I just ask Participant B if you want to add anything?
Participant B: Not really. I’m not an expert but it does seem the systems are overcomplicated, and that money is just thrown at computer systems that don’t actually work. Like other participants have said, it needs to be thought through and [perhaps] centralised. But it seems like a huge waste of money being chucked at IT.
Participant D: Can I just back Participant B up on that in terms of how much money has been spent on all of these different computer systems. Let’s not just go out and create a swanky new one, let’s actually ask the staff that use the systems what they want from the systems. What we often do – and we do it all over the country – is we think about what we think [people] want to do, but we don’t actually ask the users of the system what they want, which is why we end up wasting thousands, probably millions of pounds on systems that we don’t use.
Helen Patterson: That is useful, thank you. Can I go to Participant F? Is there anything you want to add?
Participant F: Just to back up what others have said, an obvious clear lack of a cohesive plan on these things, which is actually really clear about what kind of health outcomes digital can achieve. That is what is really unclear, I think. You’ll be losing people along the way. I haven’t worked specifically in the NHS but I can imagine how it feels when IT systems are thrown at you without clear communication about what kind of outcomes that is aiming to achieve then that is demoralising, you feel like it’s a waste of money and [wondering] what is the point? That is the problem.
Helen Patterson: Thank you. We’ve got five minutes left, so can I ask if anyone wants to make any final comments before we close.
Participant D: The one thing I’d want to add is just to think about what you’re going to do and why you’re going to do it. Don’t just rush something through because you think it’s a good idea, think about what it is that you’re trying to achieve and engage not just with us, but also with the different hospitals. It takes five minutes to send a survey out to all of the trusts and ask about their technology use. Let’s actually ask the people that need to use the system and think about it.
Helen Patterson: Thank you. Participant A?
Participant A: Similarly to what was just said, checking in with the grassroots, the staff, and also the clients, families and service users, members of the general public, and thinking actually what do people really need and what do they really want? For me and my organisation its thinking about the carers and having that ability for them to respond or manage things on behalf of their loved one – you could just have their log in details but you’re not supposed to do that… But it’s thinking that through, how do they join up, how do they link? And spending that time thoroughly investigating and finding what is really wanted and needed, because it is millions on pounds that gets spent…. And not wasting that precious resource and money.
Helen Patterson: Thank you. Participant F?
Participant F: I think overall for me it’s the realisation about the amount of resource. I think the emphasis has been on the amount of money that is required as opposed to the amount of people that you need to get on board. Like Participant A was saying, obviously about consultation and coproduction and all that. But also about staff morale and their skills. It’s about being realistic about that whole plan alongside the money for that digital transition, and not to skimp on the detail there when you’re updating any, even a small part of the system, how much brainpower and people-power that actually requires on top of the actual finances
Participant E: I suppose my overall concern going back to the NHS App is [that] this should not be seen as a fig leaf to cover up all of the weaknesses in the NHS system, or as some kind of panacea. It has got to provide real benefits to patients to supplement any benefit they already get but their local GP systems or anything else. If they don’t provide any benefit it’s a complete waste of time. The fear from patients is that it’s going to be a fig leaf where nothing in the NHS in terms of what patients want is actually going to be changed.
Helen Patterson: Participant B, would you like to add anything further?
Participant B: Just to say that people should come before any sort of computer system, and that – like Participant A said – when you actually go to your GP and they’re typing away, that has to be done, but the person should always be put first.