A law unto themselves

What do medical staff and airline staff have in common?

What separates them is that airline staff do not train for their jobs for five years, yet have the safety of dozens, if not hundreds, of passengers in their hands. Doctors train for five years in medical school, then go through several years in junior positions which are essentially learning-on-the-job roles. And whatever they do wrong, 300 people will not get blown out of the sky.

What joins them is that they act like a law unto themselves, and feel entitled to disregard written agreements and assurances. Musicians are told they can take their instruments into the cabin, while disabled travellers are told they can travel … and they turn up and find that their instruments have to be thrown into the hold, or they need a chaperone (which they didn’t last time) or just can’t travel, and the written assurance means nothing. If someone requires a particular, unusual drug, and their clinicians know that, and it’s written on their notes in big letters and they even have a bracelet on and a firm promise that they won’t be given the drug that caused them a stroke in the past but the unusual drug nobody else has … and the patient is under anaesthetic and can’t object, they give them the drug they’re allergic to anyway.

Patients often don’t like taking these drugs. It’s not only doctors who think they’re “dirty”. They have no reason to get sniffy. Patients take them because they have no other choice.

I don’t like keeping a heroin-copycat in the house. I live in fear that my amazing children will somehow find a syringe lying about or a broken glass ampoule top. My GP and I have an understanding. I only ask for a script when things are desperate … — Sue Marsh, April 2012

I hate taking morphine (its actually pure - legal! - heroin) & I know my body is now dependent on it cos I get bad withdrawals if the pump stops going thru 4 some reason. BUT, I couldnt stay the way I was - curled up, crying, in agony, 24/7 - & Id tried literally evry other painkiller going — Lynn Gilderdale, March 2006

I’m a bit late writing about this due to work commitments, but yesterday morning Sue Marsh, the renowned disability campaigner who has Crohn’s disease, had bowel surgery. She had advised the staff at Addenbrooke’s hospital in Cambridge that she was allergic to the opiate painkiller fentanyl, which had caused a very severe reaction when she was given it in similar circumstances in 1997, which she describes here. Instead of reducing the pain, it caused extreme pain and when she, her husband and her mother protested, the latter two were expelled from the hospital by a nurse who threatened to call security as they were “disturbing the other patients”. In this recent admission, her husband was again kicked out of the hospital late at night, having been assured in writing that he could stay with Sue on her first night, by a nurse who, as previously, threatened to call security.

Stephen Sumpter summarised what happened in this recent episode at his blog (the full stream of tweets from Sue is reproduced there as well):

She was wearing an allergy warning bracelet and the allergy was also noted on her consent forms. In fact Sue had agreed with staff that she would be given Pethidine which is what she had been given after several previous operations and is one of the few drugs that will work for her. When in spite of all of this Sue was given Fentanyl while under sedation, the pain team refused to give her the Pethidine when she came round and refused to call the on-call anaesthetist to change it – they claimed that no one had used Pethidine for years. Even after Sue was able to prove that she had been given it more recently, and prove the agreement to use it on this occasion and her allergy, she was still refused the pain relief that she needed. Faced with this refusal Sue turned to Twitter for help.

The situation seems to have been partly resolved (Sue has stopped publicly talking about the situation for legal reasons) but that it has happened, yet again, is scandalous. As I said in a previous entry, people being at risk of harm while in hospital is something we condemn dictatorships like Syria for, but has been the lot of the chronically ill in British hospitals for decades. Many doctors seem to resent patients whose conditions resist their attempts to treat them, and patients who know more about their own conditions than the doctors do. Nor is it only due to recent funding and staffing cuts: this arrogance and callousness was being reported well before this government came to power. In fact, it’s not even confined to the UK.

As Sarah Ismail said, the next person this happens to might not live to tweet the tale. Mistakes happen sometimes, but there was no excuse for this: her demands had been clearly expressed and documented, so clearly either someone neglected to pass them on, or someone thought this was some drama queen making ridiculous demands. There must be some way of punishing medical staff who cause extreme distress and pain to patients through negligence, even if it does not cause loss of life or a measurable decline in their health. Patients must be able to have confidence that, especially when unconscious or for some other reason powerless to help themselves, they will not be subject to harm, and it is an important part of this that agreements are kept and assurances delivered on. Healthcare must, as far as possible, be fear-free, and nobody should be above the law or beyond the normal rules of polite society.

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