I’ve seen a lot of in the press and on social media in the last few years about how people shouldn’t turn up at Accident and Emergency (A&E) for illnesses that are not emergencies.

However I think people in chronic pain or with long term illnesses have been all but forgotten in this rhetoric. I’ve never gone to A&E myself, but I know many people in pain that have, and their stories all share one thing in common – they went there out of total and utter desperation, and I am utterly sick of them being demonised for doing so.

People often have no choice

Firstly, of course there’s a better place to go to than A&E for chronic pain. I completely appreciate this, but my experience people appear at A&E when they have tried literally everything else, and the normal care pathways have failed them – not the other way around.

I’ve sat in on several meetings with health professionals and clinical commissioning groups who have expressed exasperation at the people who appear at A&E who shouldn’t do. They cite the costs that these people incur to the NHS, but they forget about the desperately ill person at the heart of that decision.

I rarely hear about how we could be helping people with persistent pain much earlier in their desperation, by offering them the info they need to help themselves while they endure long waits on waiting lists to see the long lists of health professionals that they’re bounced around.

I’ve been on the verge of going to A&E on numerous occasions due to the awful pain I’ve experienced due to endometriosis & adenomyosis. – Patient

We need to get peoples pain under control – only the opportunities to do so are missed, or the patient in question is at the bottom of a very long waiting list.

People are desperate

Patients have usually tried visiting everyone else, and they’re still in pain:

• Their doctor
• Another doctor
• Yet another doctor
• A consultant
• Another consultant
• A blood test
• A scan
• Another scan
• An operation
• A follow up on the operation

Each bullet point is a wait from anywhere from two weeks to six months. You can see how precious diagnosis and treatment time trickles away very easily. It’s utterly demoralising and adds to the desperation.

Crucially, many patients realise how inappropriate going to A&E is but they have no where else to turn to, they’ve tried everything that has been suggested to them and they’ve waited patiently for each step, but they’re through with waiting, even though they know the actual help that A&E can offer is extremely limited.

I’ve been to A&E maybe 100 times in the past two years, and each of the experiences were horrible, soul-crushing and pointless. – Patient

A rock and a hard place

Who gets to decide what an emergency is for pain anyway? Case in point, this quote from Hilary Mantel:

How much pain is too much pain? How do you know when you are in danger? How do you know if your stoicism is admirable or ridiculous? How do you recognize an emergency? – Hilary Mantel

I trust the patient to know when their normal pain is past what they can personally deal with. We the patients are the ones dealing with pain every day and I personally can’t judge anyone that deems that their pain has increased past the point of what is normal or reasonable for them.

I cannot judge someone for needing help right now. We can only relate with that desire. On a practical level I can’t completely condone that decision, but I can completely empathise. I know there’s a better way for that patients and as my quotes from patients show patients themselves realise that A&E isn’t the best place for them to go, but they have no other options. At all.

However when I’ve actually thought about getting in the car to go to the hospital I’ve always talked myself out of it due to the awful stories I’ve heard from the lovely ladies who have shared their stories. – Patient

Long waiting times

I believe chronic pain conditions forgotten by the people that lead in our medical institutions. This bears out with what you hear in the media – those who are chronically ill are almost always defined by an elderly age – the silent majority of young and middle aged people living with chronic conditions are left behind.

I got diagnosed with stage 4 endo in Dec 13, after suffering for 15 yrs with pain. I waited a year and a half to have an op to remove it. – Patient

No wonder people get boxed in by pain, and have to stand around while the pain builds up in them like a pressure cooker. Here in the UK our NHS (while brilliant) relies on people holding on and waiting to give everyone equal access. Our NHS could do more to signpost people to self management or pain management resources while they wait, the waits are solitary and endless. Each wait for a consultant takes months, each operation counts up to years, each opinion from someone watches another season pass by. Is it any wonder that people get desperate?

It gets to the stage when painkillers don’t do anything and I can’t cope with the levels of pain almost to the extent where I can’t physically function. – Patient

What could be done

When you have a rest of life condition, which feels bad – really bad – where you feel like you’re going to die. Who is the best person to judge whether or not someone should go to A&E? Late at night, out of hours, when you and your family are terrified. I think it’s remiss of anyone else to judge anyone for that decision.

What should come after the immediate response at A&E is a followup with that person to understand how they got to this point, what their options are after A&E and what they can try next – a care plan. I don’t know many chronically ill people with a care plan. They’re simply muddling through illness on their own without long term support because no one’s shown them how to avoid A&E.

Until we change that fact, people in pain are going to keep appearing at A&E, and who can blame them?