If you have a chronic illness, how normal is it to be making complaints to the hospital?

[daisiessandbuttercups]

I have Crohn’s, but this question is for anyone with any medical condition that involves regular clinic appointments, tests, scans, medication issues, getting in touch if you have a problem etc.

I’ve had Crohn’s for many years and I’ve had so many problems with the clinic in the past few years, I feel like I’m writing to PALS at least once a year at the moment. Nearly every time I have a flare there’s a problem of some kind, fighting to be heard, nurses who don’t understand the problem, miscommunication leading to prescription errors, all sorts of other things. The stress they put you through is so unfair.

Is this normal? Is this just what we have to do to take care of our health? I’ve been in tears for the past few days because the process is so difficult.

Yeah my partner of almost 15 years has Crohns, and while the medical admin is settled now, it took him over a decade to get on the right medication, get someone to listen to him, you name it. Then they took him off the only medication which really worked. He's been on for the last 2 years but I'm dreading his next flare up as the NHS have been so useless.

Same for me. 30 years of huge uterine fibroids and the NHS have never done a thing to help me. I'm lucky that I can now use my work's private health but that's only been since this summer and I've been suffering for 30 years with this.

It does strike me that if they don't know how to handle it, they ghost you. That's my exact experience.

The NHS is a shitshow but I knew and know that. The only time I complained was over my late husbands treatment when he was dying. 😡

I don't know what the answer is to it all - nothing improves despite the billions thrown at it. 🤷‍♀️

Another Crohn's patient here - I've been waiting for some tests for nearly a year. But I'm too scared of annoying the IBD team to make a complaint.

Do complaints to PALS actually do any good, I'm genuinely asking in case I have to make one on behalf of my husband.I'm fed up of the constant cock ups, let downs and miscommunication over the last 3 months at an already stressful worrying time, my head is spinning with it all.I know they are understaffed but they don't help themselves very much at times and they don't listen

Autoimmune condition sufferer, my rheumatology appointment has been put back 2 years when it's normally every year. I managed to get a cancellation luckily. It's happened with other departments too. Gave up with cardiology and the pain clinic as I think my referrals & follow ups got lost in the system. Perhaps I should complain.

It depends on exactly what the complaint is, and what can or can’t be done about it. In a lot of my cases it’s to ask them to do/stop doing certain things and listen to me next time. Sometimes I’ve just asked for an explanation of why a certain thing was done.

There are higher places to take complaints to, for example complaining directly to the hospital trust, and above that, the Parliamentary and Health Service Ombudsman, but apparently you can only complain to the PHSO if you’ve already complained to the hospital first and not been happy with the outcome.

You should absolutely send an enquiry to ask what’s happened to those referrals. Not all enquiries to PALS are “complaints” in the sense we’d imagine.

Please don’t worry about complaining. These teams are under staffed and over stretched, complaining often backs them up and supports their own complaints to management about their struggles.

Yes thank you, you're absolutely right, I should pursue enquiries. It's difficult enough managing these conditions without all the hassle and red tape involved. A senior nurse specifically allocated for certain tests, didn't have a clue about 2 common co-morbidities & her pronunciations as she read from the fact sheet were positively Del Boy. I'm sorry you've had grief too. Call me paranoid, but I sometimes think that maybe they're relying on us being too weak and poorly to put up a fight.

yes and no .
i have complained twice to PALS about rudeness in A&E. The second complaint was 2.5 years after the first one. Both times the consultant in charge of the department phoned me and apologized profusely, which was nice. However, apologizing and then making no changes is not much use.

Yes i try to limit complaints so they don't think I'm the problem but I would say I average 1 or 2 a year. Sometimes the threat of pals can be enough. I had an issue with a medical secretary recently and I'd given her so many chances to resolve the issue and I finally said I don't want to contact pals but you've literally given me no choice at this point this was after months and months of back and fourth and like magic issue resolved and an apology without having to contact pals

IBD suffered here and I'm sorry but all the treatment I've had has been amazing 🤩. The IBD team are fantastic, the doctors take my blood four times a year, I get all my COVID jabs on time by invitation and after alarmingly bad FIT test (iykyk) I was whisked into hospital for a colonoscopy and histology. I got the results which were clear for anything other than IBD in two weeks.

I cannot complain, they're fantastic.

How long have you had IBD for?

I dither between the fact that I have chronic fatigue syndrome and other health issues between pushing for the treatment I need and not having the energy to actually make a fuss and deal with a long drawn out complaint.

It's shit with a chronic illness, OP, because you mostly know yourself through having to live with it and manage it WHAT it is you need, and then you end up arguing with health professionals who want to do something different, or prescribe something different and just mess about with what is actually working for no apparent reason other than they've decided it might be better.

Fully diagnosed 9 years ago but probably had it 12-15.

I have a chronic illness and the communication at the department I am under is awful.

I complained to PALS after 3 years (mainly about lack of communication, failure to set up for my scans, bloodtests etc). PALS spoke to my consultant. My next appointment was him being pissed off with me about it all.

Wow that is shocking.

I’ve gone through my email and realised that actually most of the complaints I’ve made have been about a lack of communication.

I have Addisons disease which is fatal if mismanaged or not treated correctly. I advise in a group for those with Addisons / adrenal insufficiency and the way we are treated generally is horrendous. Huge lack of knowledge and basic mistreatment and mistakes made. I was misdiagnosed for 18 months with panic disorder when I should have been diagnosed with Addisons and I nearly died. Most people in our group (9K of us, which is almost everyone in the U.K. with adrenal insufficiency) have made some form of formal complaint about their treatment. I have personally made 4 so far, mainly about guidelines for steroid dependent patients not being followed during surgery or dental treatment when this is easily found by a simple google!

Unfortunately I think it’s normal - usually it’s made no difference.

I’ve just gone and upset myself by searching through my email and seeing all the correspondence I’ve had with PALS and the hospital over the past few years. Some of it as an absolute farce.

I wonder if part of the upset is due to having to deal with this long-term, so as time goes on, we lose our patience more and more and finally have to speak up. I’ve noticed all the complaints I’ve made have been in the last few years, rather than when I was new to it.

When I lived in the UK DS was often in and out of hospital. And every time I'd end up putting a formal complaint in to PALS. I cannot understand basic administration and support were so impossible to get right.
DS went on to have a Crohn's diagnosis and while Ireland’s HSE is far from perfect and waiting lists are long, Ive never had to deal with the pure incompetence and maladministration that was routine with the NHS.

I have had a chronic illness for eleven years now.

I complained last year after some genuinely spectacularly bad treatment and the doctor in question did actually apologise in person.

average nhs incompetence I take as given and don’t bother.

I have 3 chronic illnesses and I can’t say I’ve ever made a complaint to PALS (my GP on the other hand 🙄). This is partly because the one hospital team I actually need to engage with regularly is wonderful. The other two (gastroenterology and endocrinology) I never see. I manage everything myself and via the GP, who is shit for some things, but very good with managing my prescriptions. I just get on with things. I do probably need more regular monitoring, but it’s not causing me problems not having scans and tests, so I just carry on. Because I’m very self-managed, I just stay in my lane and out of their way.

One question though is, could you switch to a different hospital?

@mindutopia I’ve been considering moving to a different hospital, but it’s such a risk. I know another hospital where someone I know has been treated wonderfully by the gastroenterology team, even visited them in hospital and could not believe how well-run the wards were. But this person has more severe problems than me, and is also male, so that may be something to do with it.

I’m in the middle of a flare at the moment and waiting for some test results, so it’s not a good time to switch. However, if I become ill enough to need to go to A&E, I’m seriously considering turning up at this other hospital rather than my usual one.

I have a DD with a chronic illness. IIRC, I’ve made three complaints about her, and DH did another one!

We’ve taken her to A & E regularly for eighteen years. The last two times, they missed three fractures in total. I complained both times.

One complaint was because she’s supposed to get an appointment and blood tests every six months. The last one was December 2024. They cancelled one on November 2026. I complained because according to their own reports, she’s supposed to be under “close surveillance”!