Wednesday, 25 July 2012

Killing Season (Patient Survival Guide)

August is often jokily known as Killing Season.

Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.

I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.

Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!

Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.

Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.

It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.

So, a few tips for people like me on surviving the Killing Season:

1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor

2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell

3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain

4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months

Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.

Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.

Good luck!

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