Guess how much I love you

Some things in life can be counted, weighed and measured. Two books, half a bar of chocolate, three pounds of cherries, 50g of hand dyed cashmere yarn, a metre of string. Or perhaps two hours wait in in A&E, one hairline fracture, three beds, fifteen stitches.

Other things are less measurable, expect perhaps by comparison. How funny is Jeremy Hardy? Does he make you laugh more or less than Andy Hamilton? Is an oak tree lovelier than a copper beech? Is Brief Encounter the saddest film you've ever seen?

The government thinks nurses should be more compassionate. It also thinks this is something that can be measured. How do you measure compassion? If I am compassionate towards one old lady in the morning can I treat a second old lady like second class citizen in the afternoon and still reach my compassion target? How many times do I need to say "there, there" before I can record it as compassionate activity? Is mopping a brow more or less compassionate that fetching someone a cup of tea? What is compassion, anyway? What happens if I feel as though I am being compassionate, but the recipient of my compassion feels I am being patronising, maudlin, overly familiar or intrusive?

Compassionate care is a good idea - as is treating patients with dignity. We should also treat our colleagues with compassion and dignity. We know what these things are - we certainly recognise when they are absent. But there are some things in life that just can't be measured (Elizabeth Barrett Browning not withstanding) or made into targets. They are the very things that are most important.

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Invasion of the body snatchers?

I'm not a great fan of sci-fi, but those films I do enjoy are the older ones that raise philosophical questions (The Fly considers a classic question in philosophy around identity and the mind/body problem) or political questions (the original Body Snatchers airs concern over communism). The Invasion of the Body Snatchers is particularly scary because the point is that you can't tell who is still human and who is now alien. When you can't tell it's so easy to get yourself trapped with the wrong sort of person.

This conundrum - how do you tell good from bad, real from fake - arose this morning. There was an item on the news about a man whose skin cancer had been cured by an injection of his own cloned immune cells. The report is full of detail - the cancer was advanced, had spread, five billion cloned cells were used. It all sounds plausible to the lay person, and it's on the BBC website and in the Guardian so it must be true, mustn't it?

It's certainly a rather bizarre story. For years we've been told cancer can be cured only through radical surgery, chemotherapy that makes you feel worse then the cancer ever did, and a very large dose of luck. Now we're being told that our own immune systems can reverse very advanced cancer.

Only two days ago the American Food and Drug Administration warned people off products sold on the internet as cancer cures. These "cures" include shark cartilage, coral calcium and various mushrooms. To the untutored eye shark cartilage is no more or less mad an idea than injections of cloned cells. Quackwatch even has a section refuting claims that animal cells injected into the body can cure cancer, which seems very similar to this current story.

This story comes from good sources, and I hope that the research will be proved to be correct, verifiable and repeatable. But in the meantime people with cancer - and other diseases - will continue to clutch at straws, to take the hands of Pod People and to chose the fake and the dangerous over the safe and the real. Who can save them? Perhaps a well informed, thoughtful, understanding clinician with time to listen and explain?

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Communications break down

We're having an upheaval of communication systems here, and are being plagued by gremlins.

If you are emailing us the "@essexrivers.nhs.uk" part of our addresses is now "@colchesterhospital.nhs.uk" Sadly this doesn't work for the general library email address and so far we've been unable to find out what our address is. So if you are emailing us internally we're on the global as Library Services RDE Colchester Hospital University NHS Foundation Trust. Externally...you can't email us at all. Every variation of our address that we've tried so far has bounced.

You could give us a ring instead...only we're unable to access our voice mail.

Fax and snail mail welcome!!

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Haben sie schmerzen?

I'm always bemused by leaflets that say on them "please ask if you require this leaflet in other formats" If you only read braille - or Gujarati - how are you going to read that sentence to enable you to know that there is a leaflet for you? How many hospitals really keep leaflets in the complete range of possible languages, just in case?

Sometimes things are more pressing than a leaflet. That's when the Red Cross Emergency Multilingual Phrasebook is useful. It works a little like the menu in a Chinese restaurant - every phrase has a number allotted to it. So a number 10 is "have you any pain?", a 20 is "do your ankles swell?" and 25 is "do you smoke?" You select the question from your English version and point to the same number on the foreign language version. All the questions require a yes, no or pointing at something answer. Really very ingenious.

There is a Link to the resource in the National Library for health specialist library on Ethnicity and Health. The library covers cultural issues and illnesses specific to some ethnic groups.

Another communication resource is Sign Translate, which translates from English to British Sign Language and 12 minority languages.

Language isn't the only difference in health. The BBC has a guide to religions, so if you want to know how Mormons feel about contraception, or the Muslim thinking on abortion it's the place to visit. Ethnicity Online from Norfolk, Suffolk and Cambridgeshire WDC is no longer being updated, but has a range of resources around ethnicity. The Equality and Human Rights Commission (which replaced the Commission for Racial Equality among others) has information on rights around race.

We've plenty of books in the library covering cultural issues and the different customs around health and especially death and dying.

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DNR

I thought I'd have a return to ethics today. However, I'm avoiding the hybrid embryo debate in favour of something a little more directly clinical. A family has complained to the GMC because they said an order not to resuscitate was on their mother's notes, and they had not been consulted on this.

Initial (knee jerk) reaction is that this is a case of poor communication. The facts are scant, so it's impossible to say in this case.

Are there circumstances under which a DNR could be put on notes, and the family not informed? Suppose a patient asked not to be resuscitated, but wanted that decision to be kept from their family, to avoid distressing them or to avoid argument. Can a DNR be a private matter between patient and their care team? Does a member of the care team have a right to tell the family what the patient wishes to be kept from them? This seems to be the flip side of the question of what the patient has a right to know. If my relative is terminally ill, but I believe they can't cope with knowing that, do I have any right to ask the care team not to tell my relative how ill they are?

Part of the issue is whether a person refusing resuscitation is competent to make that decision. A person may be deemed competent to make some decisions about their care, but not others. A person has the right to make a decision that a healthcare professional might feel to be against their own, personal code of morals and beliefs.

A DNR decision can be made before we are even unwell, as part of a "living will" or advanced directive.

All trusts should have a policy on DNR orders. The BMA, RCN and Resuscitation Council (UK) issued a joint statement last year on "Decisions relating to Cardiopulmonary Resuscitation". Many of the main points of this document involve communication, capacity and the right of the patient to make decisions about their care. It specifically says (on p18) that "refusal by a patient with capacity to allow information to be disclosed to family or friends must be respected." In other words, a DNR, agreed by a competent patient and a care team, can legitimately be on a patient's notes, without the family and friends being consulted or informed.

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Calling a spade a spade

Have you ever had a conversation with a lawyer/plumber/car mechanic and got frustrated because you didn't understand half of what they were saying? How did that make you feel? Probably like a prize idiot. Did you ask them to explain what they meant? Probably not. I'll bet you worried, too - somehow when we don't fully understand we assume the worst.

Put the shoe, if you will, on the other foot. When you speak to patients do you use medical or healthcare terminology? And how does that make your patients feel?

The problem is you don't set out to flummox anyone. It's so easy to forget that Jo Public doesn't know her excisional biopsy from her lumpectomy. When we use words every day we forget that they aren't everyday words. And of course you tell your patients that they can ask about anything they understand, but is it easy to admit ignorance? And what words do you use to explain lumpectomy? My trusty Dorland's says it's a surgical excision of only the palpable lesion in carcinoma of the breast. Yeah, right.

Luckily help is at hand from the (American) Medical Library Association. They have produced online leaflets to help people "decipher medspeak". The leaflets cover breast cancer, diabetes, heart disease, eye disease, HIV/AIDS and stroke. They also have lists of the pesky Latin abbreviations that might end up on notes.

The MLA isn't alone in feeling flummoxed. The Royal College of Obstetricians and Gynaecologists has a list of medical terms explained. A list from UCL helps decipher words by giving the origin of some of the bits of words that commonly crop up (exo, endo, angio, broncho, cardio). KidsHealth explains really basic words from acne to wisdom teeth, and the NHS Direct glossary takes you from abdomens to x-rays.

And a lumpectomy? Easy. It's a surgical procedure to remove only the cancerous breast lump.

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Two heads are better than one

The worst part of visiting the optician, for me, is the trial by coloured target. "Where do the black circles appear clearer - on the red, or the green?" Different lenses are passed across my eyes. "The red? Or the green?" My reply is possibly, maybe, perhaps the red is just a tad clearer? And I always long for the optician to say "that's right! Well done! The circles are clearer on the red." Instead, no matter how I try to make my answer sound like a question the optician only nods sagely and scribbles on a little card. Did I get it right? Have I made a mistake? Have I ruined my eyesight through inappropriate specs prescribed because I can't decide whether the circles are clearer on red or green?

Sir Roy Calne, in a letter to today's Lancet (access with your Athens password), says that it's the same for hospital patients. Arrive at a meeting with your consultant and she or he will offer you a swathe of options and ask you to chose one. Sir Roy describes being made to make important decisions about your own health care as akin to "being catapulted onto a tightrope wearing a blindfold, and then being asked to chose whether to jump to the left or the right". It would make sense to ask the doctor what they would chose, were they in your shoes, but "policy discourages an answer to this very reasonable and pertinent question."

The government is very keen on patient choice. A lot of this is about how, when and where you receive treatment. You can pick a hospital that is nearer to your own home, or perhaps nearer to a relative who will be able to visit. You can check to see which of the various targets your local hospitals are achieving. You can speak to friends and neighbours and find out about there experience. You can shop around, as it were, to find the best place for you.

If you have chronic illness then you've lived with it for years and years. It's not the same as being a doctor who has studied it, but you have plenty of first hand experience of what helps and what doesn't. You're considered to be an expert patient.

For the non-expert (amateur?) patients among us we can read up about our illness on the internet. The days when ordinary people had to rely on simple first aid manuals in the public library, and had no access to medical papers, are over and done. Some journals are free online for everyone to look at. We can form an opinion about what treatment we would or would not like. We might take into consideration the experiences of friends and relations who may have had the same illness. We're grown ups and we don't want to be spoken down to by an omnipotent and paternalistic doctor. We don't want to be told what to do.

However, do we really want to be left entirely to our own devices? My head aches, I pop into the chemist buy some aspirin. If the headache persists I want to be able to talk to someone who can tell me what to do about it. My sex life seems a little dull so I go online and stock up on viagra. When I ignore the warnings on the packet and my vision turns blue I have no one but myself to blame.

Roy Calne suggests we've moved from thinking that the doctor knows best to thinking that the patient knows best. Surely what is needed is a balance, a conversation between adults. On the one side the doctor has his or her education as a foundation, then CPD and reading the evidence layering on top of that, interwoven with experience of similar patients, similar cases. The patient has their own reading they have done. Perhaps, because their one interest is their own particular illness, they have read more thoroughly or more recently than the physician who has more than one illness, more than one patient, to consider. The patient has their own particular wants and needs, based on their religion, their outlook, their personal situation.

The library current awareness page covers stories on patient information, involvement and experience. We have book on consulting skills. We can help you find the best evidence to make sure you - and your patient - make the right decision, together.

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Please be advised that your evening repast may be found situated within the family pet

This blog has been rather quiet of late. I've been away on leave, and although I've had access to the internet I had other things to do and didn't post a single thing.

Since I've been back I've been reading patient leaflets. I proof read them. A lot of people who write leaflets apparently don't have a spell check on their PCs. I check the evidence behind any statements made. I check that the material hasn't been plagiarised (i.e. blatantly copied from elsewhere without permission or proper attribution). I ask tricky questions about the copyright of the various pictures, diagrams and other embellishments that appear. And I despair over the quality of English used.

Why is it that although we manage to use simple words and sentence structures face to face, we get hit by some horrible wordiness every time we put finger to keyboard? If a patient asks where the canteen is you say, "oh - the canteen's on the second floor. Follow the signs to Cafe Blue." If we want to put a paragraph in a leaflet about the canteen we write, "canteen facilities may be found situated upon the second floor." If a patient rings up and asks about bringing their life savings and all their jewellery with them when they are admitted we say, "it's best to leave all your valuables at home. I'm afraid we don't have anywhere really safe to keep them here". If we write that down it transmutes into something awful on the lines of "Please be advised that it is not recommended to bring valuables..." (and I can't even face typing the rest of it.)

For those of you who are Essex Rivers staff there are guidelines on the intranet about patient leaflets. There are plenty of guides on writing patient information. There are plenty of guides on writing simple and straightforward English. My simple tip would be to read - out loud - everything you write. And then see if you can actually imagine saying that to a patient or anyone.

I sometimes feel we have an obsession with writing our own leaflets. Why reinvent the wheel? (Or - in NHS speak - "Do once and share.") Find someone else's evidence-based, up-to-date, well-written leaflet. Then you have two options. Contact them. Ask them to allow you to use their text. Get their written permission. Then make the leaflet your own - add your own logo, your own phone number and so on. Please, please do not try to "improve" the leaflet by adding extra words that really aren't needed.

Option two? Well, why not be really radical and not write a leaflet at all? That's right. Don't write one. Buy in copies of the perfect leaflet you found elsewhere, show your patients how to find it on the internet, or give them a phone number to call for their own copy.

You'll find good quality information for patients in the National Library for Health, at Patient UK and through NHS Choices. For cancer information the major cancer charities produce excellent information and the Great Ormond Street factsheets are useful for childhood illnesses. The American National Institutes for Health are also a good source of straightforward patient information, but these may need to be tweaked to have UK versions of drug names and so on added.

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Testing, testing

The BBC reported on Saturday that junior doctors cheerfully order tests to be carried out even when they know that the results wouldn't mean a thing to them. The report didn't say if juniors were confident that someone else would come along to interpret the test. Perhaps they just feel they ought to be doing something when they are baffled and that patients will be reassured to hear "we're running some tests".

Could patient pressure be to blame? There's a story in today's Telegraph about a little girl diagnosed with cancer. Initially no one seemed to know the cause of her aches and pains and in the end a journalist suggested that the mother "demand blood a test." There is no indication of what kind of blood test - blood can be tested for many things. Is this patient power at an extreme? What else could we demand?

Apparently too many patients demand antibiotics for colds - which are, of course, viral, and therefore do not respond to antibiotics. In the mean time the overuse and abuse of antibiotics leads to ever more horror stories about flesh eating, drug resistant bugs.

Is there a balance needed between the patient's right to be involved and the need to respect the knowledge and training of a doctor or other healthcare professional? On the one hand we have the concept of the expert patient. Most geriatricians aren't old, rheumatologists don't generally have arthritis, and many obstetricians are male. The patient is the person who lives with a disease - especially chronic illness - day in and day out. Surely in some ways they know more about that illness than their healthcare provider?

On the other hand there is the pesky know-it-all patient who has looked up their symptoms on the internet and has only come to tell you what to prescribe for them. My favourite example of this is the cartoon of the chap in his GP's surgery with an internet diagnosis. The GP remarks "I sometimes wonder why I spent 10 years training to become a GP. Your analysis and medication would work perfectly...if you were a goat"

Doctors aren't alone in this. Parents ring up schools to explain to dimwit teachers that they have given their child the wrong grade for their homework or course work. And surely we're all familiar with the joke about the garage tariff with the most expensive price being for work done "with customer's advice"?

One way to help patients be experts rather than pests is to point them towards websites that provide them with good quality health information, like NHS Choices, Patient UK and BBC Health. Help them understand how to evaluate information - perhaps using the QUICK quality information checklist, pointing out the HoN logo or telling them about the Quackwatch site that rounds up and explains the worst urban myths, scare stories, and lies around health.

The other way to avoid the pest is to listen to them and try to work with them, not against them. There are plenty of books on communicating with patients - it really is the key to a good patient/healthcare professional relationship.

And for those of you still struggling with the meaning of lab tests - read up on it in the library. We recommend A Guide to Laboratory Investigations, the Oxford Handbook of Clinical and Laboratory Investigation and Understanding Laboratory Investigations. On the net you'll find the Lab Tests Online resource.

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To err is human

Dr David Southall has been causing a stir in the media. In 2005, following the Sally Clarke affair, he avoided being struck off. Earlier this week he was found guilty of serious professional misconduct over another case and was struck off the medical register. Paediatricians rallied round, saying Dr Southall was the victim of a plot to deny the existence of child abuse. Some parents and children involved with the doctor accuse him of following his own agenda and keeping documents that should have been in medical files. The Royal College of Paediatrics and Child Health has described him as having made " a major contribution to child health."

Doctors are human beings. Sometimes they make mistakes. Sometimes their motives are flawed. They can have bad days, they can do bad things. They are just like everyone else. Because we perceive them to have power over people we all want them to do the right things for the right reasons all of the time. We want to feel we can trust them.

There are specific laws and guidance on protecting the vulnerable in society, which all health staff should be aware of. For guidance around children the NLH specialist library for Child Health is a good starting point.

The General Medical Council provides guidance for doctors on how to behave. It is the GMC that investigates allegations against doctors. Other professions also have guidance. The Nursing and Midwifery Council provides guidance on fitness to practise for professionals, as well as information for the public on making complaints. NHS Choices also advises patients on making complaints against the NHS.

I wonder how many complaints arise from a lack of understanding on either side about what is wanted, or what can be achieved? Communication is a key skill for all health care staff - which is why we have so many books on the subject in the library.

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