Billy and Charlotte Caldwell’s story highlights wider issues to do with patient experience

I was delighted to see that Billy Caldwell had been discharged from hospital yesterday. This, after the Home Office granted a 20-day licence for the cannabis oil that alleviates the seizures associated with his epilepsy.

The substance had been confiscated on his arrival in the UK from Canada with his mother, Charlotte, last week. Shortly after which he was admitted to hospital in a life-threatening condition following a series of seizures.  The outrage has been justified. The decision taken yesterday, the right one.

We can only hope the license is more than a temporary reprieve. That the Government has at last managed to untie the knot it has got itself into. Yesterday there seemed conflicting messages from within Whitehall as to what will happen next. But we do know that a committee of expert clinicians is to be set up to look at ‘individual cases’ and that this will be chaired by the Chief Medical Officer, Professor Dame Sally Davies.

Today’s media are full of opinion and analysis about cannabis oil. Some have chosen to open up the discussion even wider and look at the legalisation of cannabis.  Inevitably others are wading in. The unfolding debate is perhaps shrouding some deeper questions that Billy’s case raises, not about cannabis but about patient experience.

The first time Billy’s plight came to my attention was hearing Charlotte being interviewed on BBC Radio 4’s Today Programme. She was up against a very senior academic whose name escapes me I am afraid. The two-way interview concluded with the latter commenting that – and I paraphrase – ‘ we have to look at the evidence and can’t do things on the basis of anecdote.’

This turn of phrase was interesting to me. For me, anecdotes are stories often told in the third person and with some implied distance from the subject or event. Charlotte and Billy’s story was not an anecdote. They were relaying their lived – and current – experience. The professor’s statement seemed an unnecessary public dismissal. I thought at the time that overcoming this perception would be the biggest hurdle for the family.

Yet this frequent rubbishing – and it is rubbishing – of patient experience as being without value, of not being believable and of relegating it to the bottom of the ‘evidence’ pile is something that will not be new to many patients.  Not only does it put patients and their families at an immediate disadvantage in their own care, it also seems an entirely unambitious and inflexible way for health and research to look at the world: who knows what promising lines of inquiry might be raised by Billy’s experiences? Shouldn’t we be embracing it rather than decrying it?

The other interesting observation about how this whole episode has unfolded – apart from the usual accusations about bureaucracy and the shoddy state of our Home Office – is that it shows how inept the system is at responding to and managing patient expectations. Having spent decades creating a culture of expectation around medicines and treatments – cure versus care – health organisations, research institutions and regulators have thought little about what this might mean for them.  They respond in the only way they know – according to rules and regulations. Rather than operating to any discernible values or principles which might guide more effective and timely decision-making.

(As an aside I wonder whether we should be investing more money in exploring public expectations of health and research rather than the typical ‘public understanding’ agenda which has always been a loaded question in my mind)

The final point is that, were we to have such principles then ‘openness’ would surely be fundamental to how the system operated: transparency over how decisions are reached, who is responsible, what information is used to reach them? If patients are to be able to contest or challenge decisions then this sort of knowledge seems essential. Fighting the smoke and mirrors that are usually put in people’s way is exhausting if not insulting.

So the new expert committee must think about how it takes on board patient experience alongside the clinical evidence, how it will involve relevant parties and communicate its decisions. But it can only ever be a short-term fix for some fundamental issues that need addressing.

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