What to do when PALS ignore you?

[DecidedlyUndecided]

I am hoping someone can help. I have been dealing with a debilitating pain in my lower right abdomen for 7 months now along with bloating/hard stomach. The pain is exactly where my appendix is and is always there but the intensity varies. I can't do the things I need to do because of the pain and it is really impacting my mental health.

I had an ultrasound early on to rule out ovarian cyst, but since then I've just been long waiting lists. I had an appointment with a colorectal consultant over the phone but I very much felt like I wasn't taken seriously and that they want to write me off as having IBS. It is absolutely not IBS, I have been on an IBS friendly diet for months and the pain is going nowhere. They put me on a waiting list for a colonoscopy but said I could be waiting a long time.

I since written to PALS to explain how the pain is so intense and I outlined all the ways it is impacting me. I expressed concerns that I haven't been physically examined and that I didn't feel I had been taken seriously. I don't feel like I can continue on in this amount of pain for much longer.

The issue is, it has been 2 months since I first wrote to PALS and they said they would urgently contact the relevant team. They said the same about 3 weeks ago when I chased this up and I have received no correspondence other than that.

I feel completely helpless and have no idea what to do to get the help I need. It feels like no-one is ever going to take me seriously and I am concerned about what is going on. I have tried so many things and it is not getting better - I absolutely know there is something wrong.

I can't afford to go private. Where do I go from here?

Not sure if I've put this in the right place?

If you’re in England, then you need to put an official complaint into the hospital. Your hospital will have their complaints policy on their website - google should find it. That will tell you how long the process should take - eg. 24 hours to confirm receipt of complaint, 30 days to investigate etc. You can also add your PALS contact to the complaint with them not having come back to you.

Unless you complain, they are unlikely to hurry you along the waiting list.

Alternatively, you could find out the consultant’s secretary and contact them to find where on the waiting list you are. Also, to offer to take a short cancellation appointment.

If you still have no luck, then NHS England is your next stop.

It sucks when you’re in pain but no one cares. However, if you don’t shout loud enough you’ll never be heard.

Good luck.

Thank you so much @Anewuser - I will get on that tomorrow, really appreciate you taking the time to answer.

Ask for a legal email address dept to write to.

My GP tried telling me Pals send 'satisfaction surveys' out; 'did we answer your question to your satisfaction', but that absolutely hasn't happened more then a month on from the hospital I was under from when the GP said that. I think the ownership is all about the person that answers the call, if they can't be bothered it sets the tone.

In a desperate bid I learnt other patients have a had problem with the same hospital but only those in housed in the old main hospital, not if treated in a brand new purpose build unit on site, which just struck me as odd.

Other helpful advice is to contact the surgeon's secretary, the most senior ward staff, not things I've felt able to do myself. My complaint isn't from pre planned surgery and I did get access to my record some weeks on, but even that doesn't exclusively spell out things as I'd hoped.

Thank you @Mindovermatter45 good idea - sorry to read you've had a tricky time too. I feel absolutely desperate at this point.

My pain is getting progressively worse this week and I think I will likely end up having to go back to A&E at this point, I can't do it anymore. I worry about wasting time and resources as I have been made to feel like I don't matter. However, I don't want to mess around given the symptoms match appendix issues.

Generally PALS aren’t able to expedite appointments. They can pass your concerns along, but that is all really.

I would contact the secretaries for the team you’re under eg gastro and ask them to put you on the cancellation list.

If PALS have gone completely silent or might be worth looking at the Parliamentary and Health Service Ombudsman

Was the referral sent by your GP? Because GP's can send an expedite letter to the hospital to hopefully speed things along if clinically necessary.
If you are in that much pain please go to A&E. An admission can also hurry along outpatient referrals

That is good to know thank you. Okay will do.

Perhaps A&E will be the best bet if it continues to worsen, they might offer a scan of my appendix at least. I just don't know how to get health professionals to take me seriously. I have a high tolerance for pain - perhaps I am not making enough fuss.

Ii would go into A and E tell them you have severe abdominal pain and the location. Could it be a grumbling appendix I wonder

Thank you @Orangesandlemons77 - this is what I have been wondering for a while now, but I have been told by doctors that chronic appendicitis is not a real thing. I struggle with this as I know someone who had exactly that with the same symptoms. There are also plenty of similar examples of grumbling appendix online.

I wonder if I need to prepare myself with some things to say so that they will not dismiss my concerns. My blood markers have not been raised in the past so they have not been concerned, but the pain is so real and so relentless.

What is your GP doing to advocate for you or speed up / change the referral. This is literally their job.

@Fallulah I was told that there is nothing else they can do - I assumed it was out of their hands now from what they said. I have been a few times to explain it isn't going away and it's getting worse and I have been made to feel like a bit of a nuisance to be honest.

It really isn’t. GPs have very little power to expedite referrals - once they’ve referred it’s largely out of their hands and they have no power over the decision making triage of the consultant team, unless the patients condition has changed significantly. Ongoing pain isn’t a significant change, despite being incredibly difficult for the patient.

It is generally far more effective for the patient to chase their referral and put pressure on the team - all we can do is write expedite letters which given the pressure waiting lists in secondary care are under are generally ignored in my experience.

I have had bowel obstructions before, they can be subacute and not easy to pick up at times.

I would just go in tell them it is severe abdominal pain and the location, hopefully they will do some scans and tests

I think it is better to have surgery if needed for things like this promptly as if the appendix can rupture you can be left with more scarring. Which has caused me problems in the future.

If it something else then you might find out what is going on as well.

Let us know how you get on

Also I think if the GP is concerned they can sent you in to A&E with a letter, I could be wrong though.

Maybe another option if to go in to the GP and say about the pain and severity etc and they can send you in for tests

My gran had terrible stomach pain and was fobbed off by doctors, she died from diverticulitis. Not saying that's what you've got but they should be taking it seriously. If it was IBS you'd have relief when you went to the toilet.

Thanks for the replies - a lot to think about. I have booked a GP appointment for Friday morning, if I feel like I am being fobbed off again I will go straight to A&E from there. Obviously if I can't hold out until Friday I will go before.

I find it hard to know what to say sometimes and how to advocate for myself. Do you think I could say, politely, that I will not be leaving until I know what is causing the pain?

Maybe say it has been going on a while and seems to be getting worse / not going away, say you are concerned it could be something serious.

Will do that - thank you

I find it hard to know what to say sometimes and how to advocate for myself. Do you think I could say, politely, that I will not be leaving until I know what is causing the pain?

I don't think this is the way to go about it - the GP doesn't KNOW what's causing the pain, that's why they've arranged a scan/colonoscopy and referred you onwards! It's a chronic pain not an acute pain so little more they can realistically do. You could stage a sit in but you'd be there a long time... You refer to being 'fobbed off' but often you're not being fobbed off, you're just not getting the outcome you want, but you need to acknowledge the GP DOES NOT HAVE ACCESS to diagnostic tests in house, or have a magic wand to fix you in their consulting room.

You can of course discuss pain relief, whether any further investigations may be warranted whilst you await follow up. But try and approach your GP in a collaborative way as opposed to a combative approach.

I do sympathise, I really do - I see both sides of the process as someone who works in the NHS and also has chronic pain. But hassling your GP is rarely the way to go - if you hassle anyone it should be the hospital team...

I hope you are seen soon.

Sorry I should have been clearer - I meant could I say that if I end up in A&E. I wouldn't say that at the GP because I understand they are limited in what they can do.

I sympathise but even A&E might not be able to find out!

Often a diagnosis is the result of multiple clinical assessments, imaging etc - there is rarely an "ah-ha!!" moment especially with chronic, non-specific pain. And sometimes we just don't know :-(

Manage your expectations and don't think that A&E hides a multitude of doctors with a backdoor access to imaging, or doctors that know more than any other doctors. And also they are generally not very tolerant of people who use them as a hopeful fast-track to bypass waiting for a specialist. (Not necessarily referring to you in particular but people in general)

This is exactly what I don't want to do - I don't want to use them as a fast-track if it's something that I could wait for. Which is why I've been reluctant to go. However, given the location of the pain and how it is getting increasingly worse, I am just asking myself the question - when does chronic pain become acute? I also have to be vigilant because of the area - there is always the chance it could be something that gets quite serious if I don't get help in time. The consultant clearly thinks it is IBS, so I do feel that I am waiting a long time because of this assumption. I know that it is something more than that because of my symptoms and the fact that the pain does not respond to any dietary changes.

I went to A&E today, as it felt like I was being stabbed with a hot knife. CT scan done and they found nothing. I suppose it is reassuring that they have not found anything serious but I was hopeful that they could find the cause and fix me. It makes me wonder what else this pain could be?! I feel so desperate. The Dr has referred me to the surgical team as an outpatient to discuss potential diagnostic surgery 🤞.