It’s easy to make assumptions about who does and doesn’t have access to data and devices, who is digitally literate and who isn’t. But our conversations showed that people’s experiences of digital services related to their health and care is on a spectrum, with a range of preferences, abilities and personal circumstances. Even when people have managed to make technology work for them, their experience is not always positive, and they find the system does not flex to their needs and preferences.   

Catherine is described by health care workers as a high-functioning deaf person. Her hearing loss developed at two years old. She recounted her experiences of growing up and being let down by the education system by not being adequately accommodated for. When we spoke about the health and social care system, she had high hopes for the increasing use of technology to communicate with patients. 

Recent research suggests that 99 per cent of people in the UK are now online.¹ Catherine falls into this group as she uses digital tools with ease and has a sophisticated personal set up of technology at her home in West Essex. While she usually lip reads, she uses a closed captioning system on her mobile phone to help her communicate with others online and in person when lipreading is not possible. She runs Google Meet meetings on her phone and asks the person she is talking to, to speak into her phone which will then transcribe it for her to read. 

^{1. Online is defined as having used the internet in the past three months, not as regular use.}

However, the 99 per cent figure doesn’t reveal the whole picture. While many more people may now have access to digital services, they may find that the services they are presented with are inadequate, rigid, or do not always meet their preferences. Catherine found that the workarounds she created help, but she also feels frustration at having to facilitate this herself, and that services do not always accommodate her and the tools she uses. She is happy and able to use the technology, but it often takes time to set up and she relies on her having a specific time for her virtual appointments – something her GP surgery isn’t able to offer her. 

During an e-consult with her GP, she specified that she would need a video call if the appointment was not in person, but she was only offered a telephone appointment. Catherine could make this work if she were able to set up the closed captioning Google Meet to use with the phone on speakerphone, but this required some advance notice of when the telephone appointment would be. However, the surgery was not able to provide the window of time for her appointment.  

And when Catherine has been able to have a video appointment, she has found some services reluctant to use the full transcript feature in addition to the captions. She finds that having access to the transcript after the call is a huge help for being able to read it back to ensure that any errors in the subtitles are corrected. She has previously asked clinicians to enable this feature, but they have been concerned about the appointment being recorded or saved for data protection reasons and have not been able to accommodate her.  

It’s important to note that not all of Catherine’s encounters with digitally enabled health services have been negative. While her own GP surgery has not always accommodated the ways she prefers to communicate, she has been offered a video call to discuss her mother-in-law’s care at a different practice. She described the experience of contacting her mother-in-law’s surgery as ‘delightful’ in that they couldn’t have been more accommodating.  

For Catherine, choice and having her needs accommodated during all her health and care encounters is key – expectations we heard from others we spoke to.  

Bill lives in Leeds in a retirement apartment and he has multiple long-term conditions. He was diagnosed with heart failure more than 15 years ago, but continuous improvements in technology have helped him to monitor his own health. He has an implanted heart device that checks the health of his heart remotely. This is connected to a Medtronic ‘whizzkid’ box plugged in next to his bed that sends instant reports to the clinicians at the hospital.  

He commented on how the progress in this technology since his diagnosis has made his care even less invasive to his daily life. With previous models of the box, Bill would have to initiate manual downloads, but the new device is programmable from the hospital. He was ‘amazed at how quickly it all changed’. The box has a dedicated 5G unit that’s plugged in and charged 24/7 so if anything goes off during the night and pacemaker team want to interrogate it to find out what's happening, they can do that while he sleeps. The team at the hospital can download reports whenever they need to without Bill needing to leave his home, and he is able to initiate a download for himself too.  

Bill also told us he was happy with the changes to the way his appointments were delivered during the pandemic. Having his appointments online was easier for him, and he is still involved in his care as much as he wants – he is even following his cardiologist on Twitter.  

The impact of digital tools on people should not be underestimated. Where it works – like it does for Bill – it can empower people and allow them to take a more active role in their health care. But in many cases, the additional barriers and lack of choice result in people feeling unempowered and unlikely to seek support. 

Amy shared how technology can support her in accessing health care, but that it’s not always easy. She grew up without attending formal education and she cannot read or write. She’s currently living in supported accommodation after experiencing homelessness. She uses her smartphone to help her understand written communication. Using software on her phone, she can dictate and listen to written text read aloud. She also uses voice notes to message her friends and staff at the supported living charity.  

But this digital workaround isn’t always effective. Amy told us about some cases in the health and care system where it simply doesn’t work. She spoke about her experience of filling out forms online, and her text-to-speech software not registering different formatting of the forms. Amy told us she is not always comfortable having to ask people for help with forms, particularly when they are private and health related, resulting in concerns over her privacy, issues with information governance and ultimately, her not attending health care appointments.  

Like many others we spoke to, Amy doesn’t think there is enough choice given to people about whether they want services to be digital. She suggested that the balance of digital and face to face is not right and has an impact on her independence and control over her own health and care, and the likelihood of her seeking support.  

While some might avoid interacting with health and care services, others find alternative solutions, such as paying for private care. Catherine told us that for her hearing needs to be met during the pandemic, she resorted to paying for private physiotherapy appointments. She spoke about how, during her virtual appointments with the NHS, she wasn’t able to follow the verbal instructions while going through the exercises as she would normally rely on reading the transcription. She wasn’t able to attend consultations in a way that allowed her to effectively communicate with the clinician, and so went private to accommodate her needs.