Honestly? patients deserve better

Lord Saatchi, between referencing his bereavement as the motivator for his bill, writes in the Telegraph that honest opposition to his bill has dispersed contentedly. Not so.

I experienced a very bad bereavement, indeed more than 5 significant ones within around 18 months, and it certainly did influence my decisions post-hoc. I had intrusive flashbacks of drawn out and agonising deaths, I was plagued by second guessing what I could have done or said differently, what I could have done to have altered the outcome, did I let them down by allowing them to do that, did I let them down by not insisting on more?  I crumbled entirely, indeed so much that I can never apologise adequately for the extent to which I fell apart. The experiences I went through and the profound and haunting loss had such a detonating influence on me that I tore my previous life to shreds, annihilated my job in a place with good colleagues, polite receptionists, comfy chairs and sensible pension schemes which gave out free cake and drinks and went back to the beginning, to medical school, to become a doctor. I also teach students and health care professionals, help others who have experienced traumatic bereavements and give time I don’t have in my committed work for a national charity.

So, I give a nod of respect to Lord Saatchi’s stated vision and aim and feel protective of his tenacity and drive to make a difference, make it matter and continue his strongest bonds and meaning through these activities, effecting positive, meaningful change.  I am however a firmly opposed critic, which doesn’t sit easily with me.

Why am I critical?   I do not admire how he appears to choose to abuse his power, wealth and political influence to exert control over a legislative catastrophe in his name. I do not admire deliberately falsifying the law, misrepresenting medical practice and nasty spin on his opponents. I couldn’t bear his misuse of grieving and aggrieved relatives as a PR victory.  I find his total lack of mandate from those whose opinions should matter and the lack of legitimacy in the process simply unconstitutional, arrogant, hubristic, chilling, recklessly harmful and misleading.

I’m critical because, with such power and influence, such drive to make a change, I am left wondering just why Lord Saatchi ignores the views of the medical profession who tell him this is unnecessary and undesirable, repeatedly ignores esteemed medical law experts who unanimously tell him he’s wrong on the law, ignores the views of patient groups and charities who are fearful of the consequences and ignores defence unions- whose role is to defend doctors on the front line and provide guidance on best practice.  Overlooking the failure to consult before his bill was ever launched, I can’t get past the failure to listen to an overwhelming body of opinion saying his idea was not based on the right law, was not required and would not help doctors or patients.        For, under his proposal, nobody wins. Doctors aren’t entirely able to be protected from being sued, for such is the likelihood of satellite litigation that many more doctors and their colleagues may be dragged into the churning mill of the legal process. They will also be swamped by his procedural red tape and lose the remaining crumbs of clinical autonomy trying to follow a procedural hoop-athon. It’s written to provide a benefit for only those who are truly negligent or even exploitative of desperation and hope-in-hype, which is precisely why some have termed this a ‘quack’s charter’. This is not however inert for non-quacks. It will have procedural and practical consequences for the vast majority who are committed and excellent doctors,  rendering them handicapped, bureaucratised, pressured yet uncertain of potential liabilities in an array of legally creative and expensive ways; and possibly, if Friday’s musings are to be followed up, it may leave them wide open to GMC fitness to practice investigations, and all in the name of Maurice Saatchi, the PR and advertising legend with no legal or medical background at all.

Patients do not gain any rights of access to a drug under this bill.  All they stand to gain is the knowledge they will have immeasurable difficulty in ever obtaining any form of redress for serious harm and suffering, serious care needs unmet by the health service, caused by defective drugs; for who is liable for these under the bill?; or an entirely negligent decision or unreasonable basis to treat. Their relatives gain the comforting knowledge that they ‘tried everything’, against the best possible knowledge of science, that could easily end in death, suffering and the removal of any quality of life for the patient.  They gain the knowledge that the ‘results’ of such experimentation are meaningless, and will help no future patient. A dehumanising, agonising and barbaric accolade.

Indeed, the bill doesn’t even solely apply to those with cancer, or nearing the end of their lives. This allows full-on experimentation, expressly and entirely unscientifically, and attempts to act as a defence, while simultaneously adding bureaucratic mayhem and managerial mandates for the good doctor, that still don’t combine for any logical purpose.  It does not make sense.  If it made sense, I’d be supportive and the medical defence organisations would be supportive.

It trashes the law and trashes the importance and respect for any scientific integrity and for a patient’s quality of life.  Patients deserve better than this. It’s frustrating, as in his esteemed, powerful position I would listen and put my name to something that might genuinely help others.  I’m still not honestly sure why he won’t.

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