Navigating services: what happens when carers aren't heard?

Most of us can picture the moment, because we've all had one, when we finally get through to the right department on the phone, or into the appointment we waited weeks for, and within minutes it's clear the person in front of us doesn't have the information we need, or doesn't have time to listen. We leave feeling worse off than when we arrived, still holding the same problem.

It might be a GP receptionist who can't fit us in, a social worker who's changed three times in a year, or a consultant who talks past us as if we don't know what's going on at home. Whoever it is, the feeling afterwards is usually the same, frustration, exhaustion, and the nagging sense we'll have to go through it all again before anyone properly helps.

We asked the Mobilise community about this, once in 2025 and again in 2026, because we wanted to know two things: how hard we find it to move on after one of these interactions goes badly, and how confident we feel knowing what to say or ask for the support we need.

Why did we ask the same question?

We run this survey every year, rather than as a one off, because our experience of the system isn't fixed. Policies shift, budgets tighten or loosen, and what helps one of us caring for a parent with dementia might not help another caring for a partner after a stroke. Asking the same questions each year lets us see whether things are actually moving, rather than relying on a single snapshot.

What's changed, and what hasn't

In 2025, around 90% of us said moving forward positively after a difficult interaction felt somewhat or very difficult, and in 2026 that fell a little, to about 80%. Confidence moved similarly. In 2025, 27% of us felt confident knowing what to say or ask for support, rising to 30% in 2026, with fewer of us disagreeing outright, 49% compared with 54% the year before.

That's a real improvement but we need to understand what's behind it. Navigating services hasn't got meaningfully easier for carers - most of us are still finding it somewhat or very difficult. It looks like what's changing is our confidence in knowing what to say when we walk in to an appointment, which is different from the system itself becoming easier. Some of us are getting more practised at working the system as it is, rather than the system becoming easier to work with which isn't necessarily a good thing because getting better at coping isn't the same as things actually improving.

The advice that keeps coming up

When we asked what tips we'd give another carer struggling to be heard, the answers were remarkably consistent across both years, and a handful of themes appeared repeatedly.

1. Persistence

 Around a fifth of us used some version of "don't give up" or "keep asking," sometimes as the whole answer. One said:

"You may have to fight to get the service you need."

Another, after over 40 years of caring, was more weary, saying:

"It's a long, lonely road, and it gets no better." 

2. Writing things down

Around one in ten of us mentioned keeping written notes, such as a list of questions before an appointment, a diary of dates and names, or a follow up email after a meeting. Several of us described this less as good organisation and more as protection against being fobbed off.

3. Asking for someone else

Escalating featured heavily too, asking for a manager, requesting a second opinion, or going over someone's head when the first response didn't help. A smaller number of us went further, writing to an MP or local councillor, or turning to the Patient Advice and Liaison Service, Citizens Advice, or a condition-specific charity.

4. Bringing someone with us

   
   

Several of us said having another person in the room, a friend, a partner, or another carer, made a real difference. An extra pair of ears helps us remember what was said, and having someone else present can shift how seriously we're taken.

5. Changing who we see

One carer's story stood out here; after six years of struggling, they changed GP practice, and the new GP asked if they were a carer, opening the door to help that had felt out of reach for years. Sometimes the barrier is just one person, not us and not even the system, and a different person might make all the difference.

6. Knowing where we stand

A number of us mentioned the Care Act 2014, being a "registered carer," or simply knowing we have a right to ask the questions we're asking. One carer described using that status directly:

"Use your position as registered carer, you have more power than you think." 

Knowing the rules doesn't always change the outcome, but several of us said it changed how we walked into the room, and that alone made the conversation easier.

None of these strategies are complicated and what's striking, reading hundreds of these answers together, is how much of the load still sits with us as carers. We're the ones keeping the paper trail, rehearsing what to say, and working out who to ask next, while the system rarely does that work for us. Some of us find that navigation easier than others, which might lead to inequality in the standard of service we or our cared-for receive.

When we have nothing left to give

Not every answer was a tip. Around one in twenty of us said we had none to offer, because we were still struggling to be heard ourselves. One of us, a retired nurse of over 60 years, said she still finds "huge barriers" getting the care her husband needs, despite knowing the system from the inside better than most. Another described having to shout louder before hospital staff took seriously that her husband's symptoms were sepsis, not just his dementia.

This matters just as much as the tips do. If we're exhausted by our own experience, that's not a personal failing, it's a reasonable response to a system that often asks us to do the convincing, over and over, sometimes for years. Some of us are running on empty, and turning up with a list of strategies isn't always possible. That's real, and deserves saying plainly rather than being papered over with another "keep going."

Many of us are finding ways through, however imperfect, while others have reached a point where we simply don't have another push left. Neither response is wrong, they're both what a genuinely difficult system produces in different people, at different points in a caring journey that can run for years, sometimes decades.

What we know

As one carer put it:

"You are not being difficult by asking to be heard, you are advocating for someone who may not always be able to advocate for themselves."

Many of us know things about the person we look after that no professional can know from a file or a ten-minute appointment. That knowledge is real expertise, even when it isn't treated that way in the room.

What would help, several of us said, isn't more resilience training or another leaflet on how to cope. It's a system that assumes we know what we're talking about rather than asking us to prove it every time, professionals who think to ask if we're a carer in the first place, and one clear route to follow when something goes wrong, instead of being passed between departments until we give up.

Where to go next

We asked this question twice to see whether things are moving, and they are, a little. More of us feel able to find the words, even if the interactions themselves haven't got much easier, and that's worth holding onto without mistaking it for the system doing better.

In the meantime, the advice we keep giving each other, writing it down, bringing someone, asking for someone else, trying a different professional where we can, isn't a fix for the system, but it's what's worked for us, carer to carer, and it's here in the Mobilise community to draw on. If any of us are in the middle of one of these interactions right now, we're not doing it wrong. It's genuinely hard, and plenty of us are doing it too.

Another tool worth trying

Alongside these strategies, some of us have started reaching for something newer, using AI tools like ChatGPT to prepare for a conversation before it happens. At a recent Mobilise Cuppa, one carer told the group she'd asked AI what to say to the mental health team so they'd properly listen and act. It gave her a short, clear script that she practised before making the call.

Others have described something similar, pasting in a letter they've received, or the situation they're facing, and asking for help working out what to say and in what order. Some have used it to draft a calm email on a day when they're too tired or too frustrated to find the words themselves, then adjusted the tone before sending.

This kind of tool won't replace knowing our rights, or the persistence and record keeping so many of us already rely on, and when a situation needs proper legal or professional advice, that's still where to go. For the smaller, everyday moments though, phrasing an email or preparing for a call we're dreading, it's an easy, low cost way to feel more ready. Several of us have found it genuinely useful, and we lose nothing by trying.

Tips for using AI to help us navigate services

For a more thorough look at how we can use AI to make caring easier, take a look at this blog post which contains lots of tips for things we can do. Some simple ideas are:

• Ask for a script, not just an explanation. Rather than asking generally for advice, ask directly for a short, calm script, the kind of thing our carer from the Cuppa did before her call to the mental health team, so you have actual words ready rather than a vague sense of what to say.

• Say who you're speaking to. Telling the AI who's on the other end, a GP receptionist, a social worker, a benefits assessor, helps it pitch the tone and detail right, since these conversations all call for something different.

• Ask it to keep things short. Ask for something you could say in under a minute. Long, formal scripts are hard to remember under pressure, and the exhausted version of us on the phone needs something simple.

• Practise it before the real thing. Read the script out loud once or twice beforehand, to another person or just to yourself. Saying the words in advance makes them easier to find when it matters.

• Ask for a follow up email too. Use the same approach afterwards, describing what was said on the call and asking for help drafting a short follow up email, so there's something in writing if you need it later.

• Keep it factual. Stick to describing what's happened and what you need, rather than sharing more personal or sensitive detail than the situation calls for. These tools are useful for planning words, not for holding onto your story.

If AI is proving useful in your daily life as a carer, or if you've found a way of using it that's worked for you, why not start a post in the Hub and tell the rest of us about it?