Did anyone find navigating healthcare harder than the illness itself?

[Hello1312]

I hope this is okay to post.

I'm interested in understanding whether others have experienced this.

Over the last few years I've helped family members navigate a number of complex health situations and one thing that struck me was how much time seemed to be spent coordinating everything around the illness, rather than dealing with the illness itself.

Things like:

• finding the right specialist
• arranging appointments
• obtaining referrals or authorisations
• coordinating multiple consultants
• chasing results
• understanding what to do next
• researching treatment options and second opinions

I'm curious whether others have had similar experiences.

If you've managed a serious illness yourself, supported a child through a diagnosis, cared for a parent, or navigated a complex health condition, I'd love to hear:

• What was the most stressful part of the process?
• What took the most time?
• What support do you wish had existed?
• Did you ever feel like you had to become an expert just to navigate the system?

I'm not selling anything and this isn't for an existing business. I'm simply interested in understanding whether this is a common experience.

Thank you.

Yeah. When diagnosed with cancer I said I need a bloody PA as much as a cure.
If you aren't confident in advocating for yourself then you will learn fast or you'll get trampled on. I let things slip because I trusted that the NHS would do its best and my cancer spread in that time.
People need to know they can contact specialists at other hospitals. You need to be on top of current developments if you want to be on med trials. If things don't happen in a timely fashion, you need to chase them. Don't assume that info is shared between your "team", it often isn't. You need to be on top of timing treatment, scans and tests, because invariably one dept doesn't know what the others are doing.
Chase, chase, chase. Always ask for the names of people who are dealing with each situation.
We idolise the NHS, but it's a monolith that let's a lot of people down.

It’s a very common experience in my opinion - and absolutely exhausting. My DF had dementia and was cared for by DM with me helping. The system truly ground me down. For all the support that is meant to be out there we found very little. His gp was not exactly supportive, there were teams for this, teams for that and whilst some people did truly care and I will always be grateful to them, many just passed us from pillar to
post. In the end my poor Dad ended up in a busy hospital as an emergency admission which was the last place he wanted to be. Whilst on the waiting list for a nursing home bed he died, in the middle of a 6 bed ward busy with visitors . They called me as he had suddenly deteriorated and I did my best to get myself and my Mum there in heavy traffic. We were too late.
Mum has had a few health issues, and again it’s a battle to get appointments, speak to someone, tie things up and navigate the various online systems for her which she simply cannot use. At times it feels like they just want you to give up and go away. Bloody awful!

That is awful. I'm sorry you needed to do that. And so many people in your situation literally can't do that (maybe due to disabilities/no one to help/literacy issues etc).
So many people are unemployed-they should hire people as liaision/advisors etc, and everyone in your situation should have the choice to have someone as admin so they can concentrate on resting when possible.
I have to help family, as their GP wouldn't even see them these days without them using Patchs.

Personally I am in the situation where I no longer feel I even have access to a gp, let alone specialist health care.

I left my last practice because I found the downright unpleasantness and unhelpfulness of the receptionists very upsetting. I registered with a new practice but I haven't seen any of the doctors and I'm not confident about how to even get an appointment. I filled in an online form for a repeat prescription for propranolol, which i have been taking on and off for years, and surprisingly they authorised this. So I manage any other health issues myself.

I'm in my 70s and do have concerns about my blood pressure and also whether I might be pre diabetic but I feel so disconnected from the health service that I don't feel that I have access to any help regarding these worries.

This is rather like asking whether the pope is a catholic.

I don’t mean this as personal snark to you OP.

It was only luck the nhs didn’t kill my mum, not once but twice (perhaps more that we didn’t know) due to Drs who were not specialists in her condition suggesting incorrect treatments and missing communication of test results between specialists. Once she ended up in ICU and we were told she wouldn’t make it through the night due to their miscommunication.

Learning about her condition, challenging who dealt with it and treatments gave us another 18 years in relatively reasonable health with her.

I wouldn’t say it was worse navigating the system than the condition as it was a serious one she had to endure, but it was certainly tricky.

The biggest issue I have found is that your records don't link up.

So I've one issue which one hospital deals with, another for which I was transferred somewhere else as first hospital didn't deal with it. Then last year a 3rd issue where I was referred to 3rd hospital. The big issue being that my GP can't see any of these records and has to rely on being sent letters from the consultants. I have to login to 3 different portals to see my results myself.

They where supposed to be debating this today in the house of commons. I just think it would be so much easier if everyone could see everything and I wouldn't have to feel like I need to act as a go between for all these different hospitals.

God yes.

my dad had cancer for over ten years before he died and my mum pretty much acted as his PA in order to co-ordinate everything.

i am disabled and honestly it’s a fucking nightmare. A friend of mine also disabled actually uses some of her support money to pay a PA for six hours a week just to keep up her paperwork and keep on top of drugs, new prescriptions, forms, etc.

I recently had to put an actual complaint into my Gps after appalling treatment and got an official apology.

if you are genuinely actually ill or disabled you need either balls of steel or someone able bodied to navigate the system.

Yes, DH has cancer and has many times said he needs his own PA to deal with all the appointments, both making them, changing ones the NHS has made on the wrong dates/in the wrong order, chasing his monthly chemo prescription between the oncology dept and the hospital pharmacy (messed up every single month!), etc.

You'd think there'd be some kind of "streamlined" system for routine monthly tests, consultations and treatments, but even within the same department it's all a disjointed mess with different receptionists/appointment clerks for different aspects of the regular/recurring treatment. Add in other appointments for blood tests, scans, x-rays, etc., and it becomes an absolute nightmare.

Not only that, but of course, the GP surgery has no knowledge of what's happening within the oncology sphere, don't get the blood test results nor regular updates as to what oncology has been prescribing, and then the oncologist refers DH back to his GP with any issues not directly related to the cancer/chemotherapy, but the GP is "blind" as to what's going on outside his remit, so has to order their own blood tests, scans, x-rays, etc, which inevitably clash with existing appointments in different places, so also need re-arranging.

It's a nightmare. Even the oncologist has troubles with it all, as she seems to think it should all be seemless, but then when she tries to do something, just hit with a load of reasons why it can't be done, so despairs with it all.

DH often says the consultant/oncologist should have their own PA, not a secretary, but someone who literally follows them around all day, sits in on consultations, etc., to make things more streamlined, in the same way that a business director would have their own PA. He has his oncologist's direct phone number and it does help occasionally to knock heads together, but even the secretary doesn't know what the oncologist has said until the consultant notes (dictated) have been transcribed (by someone somewhere else) which can take a few days.

Even within the same hospital trust, different hospitals can't access eachother's records, even if they use the same systems. DH when first diagnosed with cancer, went through lots of tests including full body x-ray, full MRI scan, full CT scan, blood tests and bone marrow extraction. Then after the first course of treatment he was referred to the consultant in the next town (25 miles away, same trust), who said he needed it all again as all he'd received was a single A4 sheet referral letter, no records/notes of treatment and he couldn't access anything from the systems of the first hospital. It's utter insanity. Not only the cost to the NHS of repeating expensive tests but also the additional x-rays and intrusive/painful tests.

Totally agree. My child went to A&E with a broken bone. A&E said they would refer to our local fracture clinic. Who knows where they went, we lucky have the private option so just took that route.

Private can bad too though. Imagine being referred to a private mental health institution for anxiety and the first thing they ask is whether you'll sign a form to pay the bill if your private heath care provider won't.
At least you can call the central help desk to see who you need to contact from specialist, GP, physio, tests or whatever.

Another fiasco was that our oncology dept actually moved to a different hospital but they never bothered informing the patients and didn't arrange telephone number forwarding, so at first, DH was ringing his "usual" contact numbers but they went to answering machines, so he left messages that were never replied to. After a couple of weeks of "radio silence" we went to the dept reception to ask what was going on and it was all locked up and in darkness. Not even a sign on the door. So, went to main hospital reception only to be told they'd moved to x hospital but she didn't have any telephone numbers of the dept and just give us the number of the x hospital main reception. In the middle of a course of chemotherapy, you'd have thought they'd have phoned/written to change the location/times of the appointments or at least a courtesy notification that everything has changed. A couple of years later, they moved it back to the original hospital, different building, and again, we got no formal notification of the move, which again meant all the pre-arranged appointments had to be changed, again, by us as the hospital didn't do it automatically.

There are a few things that really get me, with respect to DD and ourselves

1. doctors who don’t understand how the systems in their own hospital work, like blood tests. One consultant paediatrician told me, DD1 needed a blood test in the phlebotomy department. I went there to enquire how it worked. The receptionist told me people had to get there, when the doors open at 7 am and queue for 1.5 hours, which wasn’t fair on a child! I had to go back to children’s outpatients and make an appointment there. A nurse would do it. She concluded with “He knows this!”
2. some departments give you an appointment and then a few days before, cancel it. This is really annoying, when you’ve both planned work to fit in around time off work, booked a hotel and then have to cancel it. They do this repeatedly. Then, they give you an appointment in eighteen months time, when they are supposed to be every six months.
3. the constant trying to pass the buck to another department somewhere else, especially when that department referred you there, because they had stopped doing that procedure in the first place
4. the hospital sends us a text, asking if we’d like to cancel our appointment and go back to our GP about it. Our answer is “No, the GP referred us to a specialist, because they are not a specialist in it! What is the point us, going back to the GP?” After about three times, they cancel the appointment anyway!
5. I had to request paper copies of all test results, because I knew any other HCP in another hospital couldn’t access her file there. I had to give them all past test results myself.

I used to have to coordinate DD1’s care between about 40 HCPs and public sector agencies (including the social care and education system).

I get sick of all this rhetoric from the government about how waiting lists are down, when the reality is the hospitals just cancel appointments, when the need hasn’t gone away!

Yes, that's also my experience. My DD was born with a medical condition in 2019 and pre-Covid things felt fine. She had 3 operations, good follow-ups, lots of support. Post Covid it has all gone downhill. Now we get appointments we've been waiting ages for cancelled all the time...often in the week they're meant to happen! Then we're given another one months away. They mixed up my DDs X-Rays and told me she had something she didn't. Consultants have told me they're going to do a referral and then never do. And I can't get hold of anyone for urgent matters. Unfortunately I've had to spend money going private on a couple of occasions just out of desperation. Sadly I've lost all faith in the NHS :(

@starrynight009

And I can't get hold of anyone for urgent matters.

Yes! DH has an "emergency" phone number to contact the cancer specialist nurses, but it's always answerphone and they can take a couple of days to get back to him - hardly "emergency" then.

And the several times he's used it, they've been no help and couldn't actually advise anything. There are only two responses, firstly they say if you're in difficulty and think it's urgent you need to go to A&E, and the default if that's not the case is mention it to the consultant at the next appointment. Just what is the point?? Most people could work that out for themselves as to whether it's an emergency or not. They can't actually "do" anything like suggest he reduces a particular drug so he ends up in limbo until the next consultant appointment that can be a month or two away not knowing whether to carry on the same dose of his chemo drugs, whether to reduce them himself, or whether reducing/stopping them would have negative implications.

He's also tried to get help by phoning the consultant's secretary but all she ever does is say she'll "ping" an email to the consultant, and there's never yet been any reply/response until the next scheduled appointment.

My son was diagnosed with cancer in 2024 and the most stressful part was definitely feeling more like a nurse at times than a mum, there is still that to a certain extent as he is disabled now due to some complications but it was new and scarier back then and on top of a cancer diagnosis, was very overwhelming.

My #1 support that I wish existed does exist in some hospitals but it wasn't at the hospital my son is at is that one parent should be fed. It would've made so much difference, especially as you are expected to stay with your child.

I wish the online records you can access these day where up to date and full records, even if just for the treatment received at one hospital. Ideally of course your NHS record would pull all the hospitals you access together but we're a long way from that currently. The hospital I visit regularly only has records from 2013 - where is everything more recent stored? I can't even facilitate sharing paper copies with the other two hospitals and my GP because the information doesn't seem to be stored anywhere.