Our NHS is fabulous. Let’s get that straight out there. But…ahh, there’s always a but…it could be so much better! The NHS is great at dealing with acute injuries and illnesses, and with specific well known long term problems like diabetes. What it isn’t so good at is dealing with those of us lucky buggers that have a rare, awkward, long term chronic condition. It might as well be our own fault at times…it can certainly feel like it.
We see our GP for ten minutes or so, and there’s really just time to talk about a specific problem; definitely no time to sit and chat about more general health over a range of issues. Specialists are exactly that – they specialize. If you are referred to an orthopaedic surgeon because your knee is painful, then that’s what they look at. Your knee. Nothing else. If you chopped it off and sent it in a box they’d probably be happier. Surgeons like unconscious patients and sharp knives: it’s what they trained to do. If you do have an obvious problem aside from it (like your other knee) they will tell you that you need to see your GP to ask for a separate referral. How stupid, time-consuming and expensive is that?
Physios will address the issue you’re seeing them about, and similarly will need another referral form filled it for a separate problem. Sigh. I’ve seen a few in my time, but I’m lucky that the physio I have now is great; weird as hell, a bit crazy, but lovely and supportive, and willing to look at me as a complete human being. Well as much as she can in the time. She is the only one.
The NHS looks at us in bits unless we have something straightforward and clear, like diabetes. With CRPS, hardly a single professional medical person has known what to do with me. They put their blinkers on, deal with the issue that’s listed on their computer screen, and want you out of the door ASAP thank you very much.
Yet CRPS is a chronic disease. It affects our whole body and all its systems. It is a disease of the central nervous system, and can spread it’s horribly painful tentacles just about anywhere we have nerves. Research is ongoing, knowledge throughout the NHS is poor, and ideas to treat us vary wildly….our treatment and therefore prognosis are entirely dependent upon whom we see. If we have a crap doctor, we will get poor treatment and be more ill than someone who has a good doctor who is proactive and learns something of the condition he/she is treating. How unfair is that?! The postcode lottery all over again.
So please, Mr NHS, please treat us like the whole person we are. Treat our disease. It’s affecting our whole body, so treat that body, and the mind that is struggling to cope with everything being thrown at it. Pain is such a commonplace word, used for everything from a simple muscle sprain to a nasty graze, banging your shin on the doorstep to a headache. Yet truly bad pain is rarely discussed by doctors, usually because they are scared of it. They can’t treat it. It is a well known yet barely whispered truth within the medical profession. For all their degrees and years of training, and the pharmacalogical box of delights available to them, they cannot treat the worst of pains. Particularly neurological pain, like in CRPS. So we are referred to various departments: pain management, occupational therapy, psychological health. ‘Learn to live with it’ is the mantra. Learn to manage your pain and get on with life. Easily said, of course…
Yet our body is left to its own devices, by and large. When your knee is screaming in agony, swollen like a melon and disobeying everything it was told to do during recovery, you are told to rest, ice and elevate it. That’s okay for the short term, but what if your knee then baffles your doctors by not getting better? What if your pain gets worse and the swelling stays, and your skin becomes mottled blue and then fiery red? What if the ice makes everything a whole lot worse, and you have to stop and shout ‘what now?!’ HELP! Well then you are referred of course, back to your GP first, then to your surgeon. You are diagnosed. Great. An answer at last, although the last one you wanted… CRPS. We think you have a condition called CRPS.
But. The whole thing has taken months. Months and months out of your life. Months spent sitting around, lying around trying to get to a point – any point – where your pain is less. You understand why caged animals pace, or bang their heads repeatedly on the wall, or shit in their water. You wonder whether you’re going mad. It seems highly possible. You feel dreadful, your life has been blown apart by the change in your body – work, home, social life, plans and dreams all shattered. You don’t know for how long. People tell you it’ll get better, but it doesn’t. Doctors and nurses and physios and surgeons tell you it shouldn’t hurt that much… (Excuse me a moment while I laugh hollowly.) You are depressed, ground down by pain and fear and shock and disappointment. You haven’t cried so much since you were fifteen and your boyfriend split up with you and started seeing your friend. Your doctor doesn’t understand, and you feel his suspicion. Family can’t understand what’s going so wrong. Friends can’t deal with it. You feel isolated from life itself, and you doubt yourself and your own body. You don’t understand it either.
And in all that time, your mind and the rest of your body has been ignored. You’ve perhaps been on crutches, in a cast, in a wheelchair even. You’ve been sitting awkwardly, walking crookedly…yet no none has talked to you about that. Now your back is hurting, your other knee is protesting, your neck is creaking. You mention it and are ignored. No one thinks to address that before it gets worse, to look at your posture, your relaxing positions.
Why don’t they check what position you relax in? Why doesnt that matter? It matters hugely! What if you’re putting a strain on you back, your hips or your shoulder and neck? What if you’re not supporting various bits properly? This stuff matters long term. That’s the problem – initially with a condition like CRPS, no one knows that it’s going to be long term, so they’re treating us in a short term way; yet that can cause problems for us further down the line.
So treat us holistically, Mr NHS. Treat all of our poor battered bodies and minds. Because actually, you would save millions later on – as we wouldn’t have to seek help so often for issues created by our initial injury, and then the progression of our chronic illness.
I know they’re not mind readers, and they can’t treat every injury as long term. But they should be aware of the potential for a chronic condition to develop. So that if a simple sprain is not responding as it should, and strange things are going on both at the injury site and in terms of pain, they could rethink then, at the six week mark, and look at us more holistically, before the months and years of not knowing have twisted our hips, bent our necks and backs, and frozen our shoulders. And hurt us emotionally to depths we don’t care to explore.
Just my thoughts today. What ramblings I do think… 🙂
If you read this, thank you! Please let me know what you think in the comments below 🙂