Paul Buchanan: No decision about me without me

peb-photo-jpgMany are the conversations, opinions, statements, and arguments within the patient world about the meaning of that phrase “No decision about me without me”—but what does it actually mean, and to whom? Many of us have emotionally connected it to the phrase “Do No Harm” and think of it in the same terms, believing that as a patient it must be obvious to those with power and decision making ability over us that they will do their best for us.

Unfortunately there seems to be an utter lack of clarity from anyone not on the frontline about the meaning of that phrase.

From the random stranger on the street when asked the question is an almost universal acknowledgement that, quite simply, it means EXACTLY what is says. Put the same question to the policy makers and advisors to the Department of Health and what sort of response do you get? Ask a politician and what response do you get? Many and varied, for sure, and sometimes completely at odds with each other. For us as patients this is incredibly confusing and even more difficult to understand, especially as the answer from any front line healthcare professional is always the same, always consistent and always trusted “We want to do the best for our patients.”

It has been my experience that when put to those who are at the front line of delivering care in the NHS, the answer is always wrapped up in language that puts the patient first. There is a palpable and genuine desire by all staff we meet to do the best for us.

Easy to say, so it should be easy to do we patients might think. Not quite so easily accomplished however, on so many different and often competing levels. As evidenced by the ongoing dispute between our elected representatives and the Junior Doctors, delivering healthcare is more than just words in a contract, more than just mission statements and policy goals of an administration, more than one plus one equals two. That you care is beyond argument, that you need resources to deliver that care is irrefutable; that you are struggling in the current structures and with the current strictures is as plain as the nose on the face of every patient.

For many of us the debate has moved on from a mere contract dispute to a much more important and fundamental issue—is the NHS fit for purpose? How can the “system” deliver healthcare to a millennial generation? How should patients, healthcare professionals and the funding of the resources needed to deliver care be managed and apportioned as we continue to see rising need and reduced infrastructure and funding?

It seems fair to say that all sides recognise the need for change, for improvements and for the whole system to be reviewed in terms of its use and functionality. As a patient with a life-long chronic condition I am utterly dependent upon not only the system, but also the goodwill, the heart, and the soul of the people who choose to spend their lives trying to make mine a better one.

Some of you may have read the open letter signed by a wide selection of patients who have collectively had decades, centuries even, of shared experience in being “patients” and recipients of care at the hands of the NHS.

For many of us the real shame of the current dispute is the, as yet, lack of a patient voice. So here’s a suggestion, let’s put patients into the mix, let’s make patients a part of the solution, let’s give patients a voice and ask for the help, thought, care, and support from possibly the biggest and most under-utilised resource available to the NHS.

Help us to help you make no decision about me, without me.

Paul Buchanan is a patient with Type 1 diabetes. He runs Team Blood Glucose. He is part of The BMJ‘s patient panel.

Competing interests: None declared.