Logged in or locked out? Carer experiences of using NHS digital services
Between GP portals, hospital apps and text reminders, going digital with the NHS has crept into caring almost without us noticing. In our latest Mobilise Moment survey, we asked our Mobilise caring community about it directly: how we are using NHS digital services, what is working, what still gets in the way, and what we would tell someone just starting out.
Most of us have gone digital, but the standard of the experience is mixed
838 of us responded to the survey, and the picture that came back was a little more complicated than "digital good" or "digital bad". 83% of us said we had accessed an NHS service online in the past year, ordering prescriptions, checking results, booking appointments, or messaging a GP practice. That is the norm now, not the exception. However, when we rated the experience, opinion was split three ways. Just under half of us called it ‘good’ or ‘outstanding’, over a third said it was ‘adequate’, and 17% found it ‘unsatisfactory’. For a lot of us, that split came down to whether the service worked well for us as carers, not just for the person we look after.
What’s working
When digital services work, it saves real time and avoids real stress. Checking test results quickly, messaging a GP practice without being put on hold on the phone, and managing repeat prescriptions came up again and again as the parts of the system that have definitely got easier. For those of us juggling caring alongside work, that time saving is significant.
"Once you get used to it, it's a godsend in a way. No phone calls, no waiting in queues to be seen. Order a prescription online, then it's delivered."
What’s still getting in the way
Two frustrations stood out - both specific to caring for someone else rather than just for ourselves. The first is proxy access, that is, being able to act for the person we care for inside the same digital systems that we use for our own care. This should already be possible if you are both registered at the same GP. Click here to find out more. If you aren't currently at the same GP, this feature is being rolled out in 2027. This will be a great help, as one carer put it:
"I would enable carers to register on the NHS App. I would enable information to be shared electronically between GP, ambulance crew, hospital and dentist, so that carers don't have to constantly repeat our loved one's story."
Repeating the same history at every appointment, every hospital visit, every new professional, is exhausting, and it falls on us every time the systems do not talk to each other.
The second frustration is being locked out altogether. Digital ID checks that assume everyone has a passport or a driving licence leave some of us, and the people we care for, unable to set anything up at all. As one carer told us:
"I can't get an app on my phone for my disabled wife, as she doesn't have a passport or a driving licence."
This is a real barrier for carers who are supporting someone who has never needed a passport, or has let a driving licence lapse, and it means the person who is most in need of digital access to make caring easier is the very person who cannot get it. Click here for NHS guidance on ID.
Going digital isn’t the only answer, and that’s fine
Of the 144 of us who had not used NHS digital services in the past year, the reasons were varied and, for the most part, entirely reasonable. Some of us said we simply were not confident with the technology. Others said we would rather speak to a person, whether that is on the phone or face to face. A number of us could not meet the ID requirements to set up an account, and a few of us said we just had not needed to.
None of that is a failure on our part. Not everyone wants, or is able, to manage their care through an app, and the survey is a reminder that digital should sit alongside other ways of accessing the NHS, not replace them. If a phone call still works better for you and the person you care for, that is a valid way to handle things, not a step behind everyone else.
The bigger ask was not about apps
Beyond these carer-specific issues, the biggest ask, by far, was not more technology. When we asked what we would change about the NHS over the next 10 years, appointment access, waiting times and having enough staff to be seen came up more than anything relating to digital services. A slicker app cannot make up for a three-week wait for a GP appointment, and plenty of us were clear that better digital tools should not be mistaken for a fix to the pressures the NHS is under more broadly.
What we told each other
We also asked carers what advice we would give to someone about to start their own NHS digital journey. The most common answer, by a wide margin, was “patience”. Close behind it was simply “ask for help”, whether that comes from a GP receptionist, a family member, or someone in the Hub. Plenty of us just said to give it a try, and a fair few added that it is worth taking things slowly and expecting a bit of trial and error along the way.
Some of us have made peace with remembering a dozen different passwords. Others have simply gone back to ringing the surgery instead and, if that’s you, then you’re in good company. Certainly we’re not telling our community what to do - most of us are still figuring this out together, just remember that asking for help is a completely normal part of that.
If you have your own NHS digital story, good, bad, or somewhere in between, we would love to hear it in the Hub. In the meantime, here is some further reading that might be useful:
