AIBU to think this waiting time is ridiculous?

[throughbridge]

My daughter, F22, has had abdominal pain (started lower left and has moved all over) and back pain with constant bloating for about a month now.

The doctors have said all they can do (apart from bloods, urine and swab which came back clear) is book a scan, which could be another 1-2 months away.

I completely understand the strain on the NHS, but my daughter is in constant moderate pain (and then it often flares up and becomes severe), to the point it’s affecting her work, exercise and down time. She’s stopped going to the gym because it makes the pain worse. She has quite a high pain tolerance but she was in tears with it the other day.

AIBU to think there must be something that can be done? She did go to A&E once when the pain got really bad, but they mentioned something about possible kidney stones and told her to ask her GP, so she was sent home.

[KeinLiebeslied54321]

Is she chasing it up with the GP?

[ElaineRaige]

It's not right and it worries me where we are headed with the health system. It is almost like there is a drive for it to be degraded so much that we will just choose to go private instead because it seems a better option better than what we've got. That way it softens the blow towards privatisation making it seem more palatable when really we were forced by stealth because we couldn't get the service we needed.

[jacks11]

This is the reality of waiting times at the moment. I’m a doctor- believe me, we aren’t any happier about the state of things than the patients are. We recognise that patients are having to wait too long, put up with symptoms/worsening symptoms, and in some cases delays in diagnosis will cost lives or make treatment more complex, gruelling and costly. Patients are getting a rough deal and it’s causing staff a great deal of stress, both because we recognise we aren’t always able to provide an adequate service and because patients often vent their (often understandable) frustrations out on us.

However, we are having to vet every referral carefully- radiology are having to do this too. If it is not clinically urgent (at the time of referral) then it has to wait, urgent referrals are often sub-categorised by degree of urgency- that is how it is having to work at the moment. It’s not that we don’t think living with the symptoms such as pain is ok- we don’t- but if it’s not urgent, it’s not urgent and the patient will have to wait unless the assessment of urgency changes.

To give you an example, in our area urgent scans were done in 1-2 weeks, usually within the week, and routine 2-4 weeks. It’s now between 3-6weeks (unless an in-patient) for urgent- sometimes longer- and 2-3 months or longer for a routine. There is nothing I can do as a referrer to speed that up unless I can give a clinical justification- e.g. changing symptoms or new information. Even then, when “expedition” is accepted, that still has to be balanced and weighed up against the other urgent referrals (it’s not as simple as first come, first served). It’s a mess.

[MereDintofPandiculation]

@jacks11 "Urgent" I presume is about how likely it is to kill you or become too bad for treatment to be possible. Sometimes I wonder whether we have the balance right between prolonging life at all costs and prolong a reasonable quality of life. A life where everything you might wish to do is barred because of the pain is not really a life.

[Goldenthigh]

My DH is in a similar situation, he's had symptoms since November and the GP just keeps fobbing him off. He ended up in urgent care a couple of weeks back because of the pain and they've now got him on the 2 week pathway for scans etc, he had an endoscopy about 9 days after the hospital visit and a CT scan the following week. GP is still trying to fob him off with inappropriate meds and 'come back in a month'.
going to the hospital was the only thing that helped him get seen but I see your Dd has already been to a&e with it. J don't know what the answer is, it's just awful.

[NC03]

1-2 months is fast - I have endo and am waiting for a first appointment with a consultant. In so much pain I've had to ring 999 before and painkillers don't work
Waiting time? A year

[PotatoPudding]

The trouble is, so many small things can cause these symptoms; often, they are dietary. The NHS has to prioritise scans for people they suspect have cancer or other serious illnesses. I suffer from IBD and IBS, both of which cause your daughter’s symptoms. The first thing she needs to do is start a food diary. The second thing is to cut out gluten. The third is to look into a low FODMAP diet.

[Username19832756]

I would get her to research gallbladder flare ups, it sounds very like that.

[jacks11]

@MereDintofPandiculation

@jacks11 "Urgent" I presume is about how likely it is to kill you or become too bad for treatment to be possible. Sometimes I wonder whether we have the balance right between prolonging life at all costs and prolong a reasonable quality of life. A life where everything you might wish to do is barred because of the pain is not really a life.

@MereDintofPandiculation
partially- so yes, patients suspected of having life threatening conditions will be classed as urgent, but also things that need to be got under control quickly- e.g. new inflammatory bowel disease, or conditions which are precursors/warning for severe illness- e.g. significant TiA or worsening angina despite medication escalation. It’s quite complicated at times, but whilst pain is certainly taken into account and so more severe pain will probably give you a higher degree of urgency, the caveat is that pain can often be managed with analgesics to ameliorate it to a greater or lesser degree, so it isn’t necessarily going to get you to the top of the list- the major factor is likely to be the possible differential diagnoses for your pain and the degree of pain is an additional consideration. I’m not saying this is as i would choose it to but that is the reality.

[MereDintofPandiculation]

@jacks11 Thanks for that comprehensive explanation.

"the caveat is that pain can often be managed with analgesics to ameliorate it to a greater or lesser degree" - but if it isn't being controlled by analgesics (analgesics are being used but not being effective", is that taken into account?

[jacks11]

@MereDintofPandiculation

@jacks11 Thanks for that comprehensive explanation.

"the caveat is that pain can often be managed with analgesics to ameliorate it to a greater or lesser degree" - but if it isn't being controlled by analgesics (analgesics are being used but not being effective", is that taken into account?

@MereDintofPandiculation
The short answer is ‘maybe”. It depends on quite a few factors- the most significant one still being “what are the differential diagnoses for this patients symptoms and does one or more of those meet the criteria for an urgent referral?”. Pain can form part of that, but patients can have pain for all sorts of reasons and not all of them are due to a serious underlying condition. IBS is one example of this- often very unpleasant symptoms for the patient, obviously, but where this is the likely diagnoses and other tests have been negative (e.g. bloods/coeliac screen/qfit test) then you can be reasonably reassured there is not significant underlying issue and so the referral will remain routine. Functional pain can be a particularly problematic issue here too- pain can be significant but no underlying physical condition causing the pain.

I guess the other question is what do you mean by “not controlled”- i.e. analgesia having no effect at all vs helping a bit but some degree of pain vs complete control of pain. Some patients expect the latter, but it’s not always a given and having some pain/pain some of the time is not likely to elevate a referral otherwise categorised as “routine” into “urgent”.

And then you have to consider what medications have been tried- have all sensible avenues been explored(not just medication, but dietary changes or physiotherapy, for example- obviously depends on the issue)? If not, then no a referral won’t be expedited on pain grounds alone until that has happened. We do have patients who are referred where there are alternative medication/treatment options have not been tried (sometimes because the referrer has not offered this to the patient, but reasonably often because patients have declined), have not been tried for long enough/ with adequate compliance and again, in those cases if it would otherwise be triaged as a routine case, it will remain routine.

None of this would be a such a problem, of course, if waiting times were reasonable and patients who were routine were not waiting so long- most would understand and be able to cope for a shorter period of time.