Patient choice. Feedback. Opinions. Patient power. How much do we actually mean it? How much of it is actually possible? How much of it is ticking boxes; appeasing some and little else?
The answer uncomfortably is overall, we have just about moved past lip service. And it's tricky...to assume patient always knows best is a bit debate provoking...as you always worry how much information the use of a particular ask is based on..is it media driven? Is it due to some ill thought out national campaign? Is it due to industry influence? To make matters even more difficult, we are in an era of what appears to be a power struggle...personally I have found it baffling, but when anything related to care is denied, then not all conversations post that denial is sensible or rational.
Every one, quite rightly, looks at their care and wants the best..any prioritising by health care professional based on even evidence is then seen as denial and this builds the power struggle.
Some HCPs try to have explanatory conversations which always have the potential to end amicably but again, in a system where health has been converted to widgets, time is one thing most people don't have...cue further debates. Easier to shut the patient out and carry on regardless, right?
And then there is the fundamental of the NHS..GPs as the vanguards- understandably too- for any further escalation to specialist care. How does that exactly square with patient choice? Let me give you an example..a patient develops type 1 diabetes. Now if I or any of my family developed that, I am crystal clear what I would want. To be seen by a specialist who has trained in type 1 diabetes..let me emphasise..not all specialists have that either in buckets...so I would want to research a bit, use my knowledge of the system and see someone reputed or good in their work. I will be honest, if I lived in London,I would like to be seen by Pratik Chaudhury..not because he is my mate and we share a common love for whiskey..but because I KNOW he is good. Would I see him privately...no...I would talk to my Gp and basically make sure my care in the NHS was overseen by the best..I would use my position and knowledge of the NHS system to get what's best for me.
Let's now take the example of John Smith. He however has to go to see his GP and even though his choice is to see a specialist, he is now at the point where a GP can decide whether he sees a specialist or not. There is a huge degree of variability around this particular scenario. Some would be aware of their limitations and simply do the needful, while I have also seen many who would refuse. Grounds? Twofold..first politics...not nice to be criticised for referrals to the hospital...don't you know we need to keep referrals down..so John gets caught up in that stream.Second? A degree of ignorance as well…isn’t type 2 the same as type 1 diabetes? If one can be managed, surely the other can? Well actually it isn't. But away from the science of it all, hands up how many GPs have actually trained in type 1 diabetes care.Pop quiz question..how many GPs or Practice nurses are aware what's the eligibility criteria for pumps? Even if they are, do their local team have the service..or even training?
Once John crosses that hurdle, then comes the question how does he know what level of care each specialist centre provides? Any tool or common portal to have a look and make that decision? You must be kidding...so you go to the local specialist centre...and you take what you get. Do you know whether the local team has someone specifically trained in pumps, technology or even type 1...Nope, surely the specialist knows it, right?
So there lies a fantastic dichotomy of patient choice. Driven by a combination of measuring GPs on referrals made and a degree of ignorance, in the world of type 1 diabetes, choice is an anathema. Should all patients with type 1 diabetes care be under specialists? Possibly. Should they all have access to specialists? Most certainly. Why? Beyond the ego, beyond the efficiency drive of saving PbR costs per referrals, look at outcome measures for type 1 diabetes. Awful is a polite way of putting it..variability is high.
Here's a genuine question to ponder as someone put it on Twitter...does choice and free healthcare actually go together? If patient choice is paramount, then can or should a GP deny referral to a specialist based on cost savings? Does denial of so bring the patient back more frequently creating more stretch on an already stretched primary care system? And more importantly does such barriers end up in patient care being compromised?
When we talk about systems that are efficient, in relevance to a long term condition, we have to talk long term...poor care in type 1 diabetes today results in poor outcomes down the line..look at the money being spent on complications...but yet we worry more about saving referrals on a widget based system today.
We need to be bold enough to have these discussions openly with patients and fellow professionals. Not pay lip service by asking patient leaders to come along for free and give a talk. Not tick a box, not say we have patient involvement when we are not discussing the genuine elephants in the room.
As ever, these are my personal opinions and of course is from the angle of a niched population such as type 1 diabetes. Our ultimate responsibility is towards patient outcomes and it is certainly important to maintain relations across the sector...it is by the same token, our responsibility to be responsive to patient needs and challenge accordingly the system which makes a mockery of patient choice. Things are improving..slowly...but we need to specify whether it's possible to have unlimited choice in a system where finances are under such a massive crunch..or we have healthcare based on widgets..not quite on relations.