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 and appeasing the public?
The answer – uncomfortably – is that overall, we have only just about moved past lip service.
It’s a tricky topic. To assume the patient always knows best is debate provoking. You always worry how much information the use of a particular question is based on. Is it media driven? Is it due to some ill thought out national campaign? Is it due to industry influence?
Everyone, quite rightly, looks at their care and wants the best. Any prioritising by healthcare professionals – even if it’s based on evidence – is seen as denial and this builds a power struggle.
Some HCPs try explanatory conversations. But, again, in a system where health has been converted to widgets, time is the one thing most people don’t have. It’s easier to shut the patient out and carry on regardless, right?
And then there is the fundamental premise of how the NHS works. GPs acting as the vanguards for preventing further escalation into 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.
I would want to research it a bit, use my knowledge of the system and see someone with a good reputation. I would ask my GP to refer me to them. 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 goes to his GP and, even though his choice is to see a specialist, the GP decides 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? First, it’s not nice to be criticised for referrals to the hospital, and we need to keep them 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. How many GPs or practice nurses are aware what the eligibility criteria for pumps are? Even if they are, do their local team have the service, or even the training?
Once John crosses that hurdle, then he faces the challenge of knowing 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.
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 such a denial bring the patient back more frequently, creating more stretch on an already stretched primary care system? And, more importantly, do 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. Just look at the money being spent on complications. But we worry more about saving on referrals 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 once in a while and give a talk. We shouldn’t say we have genuine patient involvement when we are not discussing the elephant in the room.