When BBC correspondent Allan Little's 73-year-old mother was admitted to hospital a few weeks ago, he knew it would be a struggle to keep abreast of her care. Nine years ago, Little's wife, broadcaster Sheena McDonald, sustained serious injuries in a road accident and he discovered that despite being a top investigative reporter he couldn't get the information he wanted. "She'd been in a coma, and as she came out of it endless specialists rolled up. And I'd keep on asking them, 'Could you explain to me about the head injury?' And they kept saying, 'It's not my field'. Finally I asked, 'Whose field is it?' And they said, 'A neurologist, but there isn't one available here'."
With his mother, the situation repeated itself. "She was admitted as an emergency around midnight, but once we arrived we were left in a cubicle, with my mother lying on the bed, for around 40 minutes before anything happened. Eventually someone arrived and asked to 'borrow' one of her fingers to take some blood - no mention of who he was, what he did, what was going to happen to the blood. Later on, when a doctor did finally appear, I followed him out to find out what was going to happen next - but when you ask things you've every right to know, you feel like a nuisance, as though you're intruding."
Little was shocked by the glaring communication shortcomings of the medical staff. "It's not difficult or complicated to make clear who people are, what their job is, what they're doing and why - but it rarely happens. When Sheena was moved to a specialist neurological centre, the communication became exemplary - and I was able to be much more effective at helping to care for her."
"When you find yourself at a relative's bedside," says Dr Rob Davies, consultant physician at the Manchester Royal Infirmary, "identify and then make a beeline for the senior person responsible for his or her day-to-day care - usually the lead nurse on the ward." That person, he says, will have the best overview of your relative's care and will know which doctors you need to talk to and how to access them.
When you finally find yourself face-to-face with the right doctor, his or her time will be limited. "Think through carefully what you want to get out of the interview - it really helps to have a list of questions written down, even if it's only on the back of an envelope after a five-minute think," says Davies. "The other piece of advice I'd give is, don't go in alone. You're unlikely to remember everything that's said, particularly in traumatic circumstances, and having someone else there to listen with you, with whom you can reflect back afterwards on what's been said, will be very important to you."
"The thing I always say to people is try to think a stage ahead, so you're finding out what's happening next as well as what's happening right now," says Cathy Ross, a cardiac nurse for 20 years who now works for the British Heart Foundation. "Don't forget that most medical conditions have specific charities with information for families of affected people, and they can give you information and support."
Communication in hospitals, Davies says, is improving. "In the past 10 years, it's been taken a great deal more seriously. Communication skills are now a standard part of the curriculum at medical schools." Standard, but, he admits, not necessarily paramount. "At the end of the day, would you rather have a useless communicator who's a brilliant surgeon, or a great communicator who's not that great in the operating theatre?"
The truth is that patients and their relatives want both. After all, Davies himself says that most complaints hospitals receive about patient care emanate, at some level, from failures in communication. What's more, says consultant psychologist Dr Gillian Colville of St George's Hospital in Tooting, south London, there is research to suggest that where relatives don't receive high-quality information they are more likely to go on to suffer anxiety, depression and post-traumatic stress disorder a few months down the line. "The sick person is dependent on their relatives for their long-term recovery, so keeping the relatives well-informed is really crucial," she says.
"ICU [intensive care unit]," says Colville, "is sometimes known in the profession as the Ineffective Communications Unit." This would come as no surprise to James Dickie, whose dad recently had a heart by-pass operation. "There were tubes everywhere and alarms going off, and I didn't have a clue what it all meant," he says. "I'd think, does this mean something terrible is about to happen? And then a nurse would just wander over nonchalantly and flick a switch, and I'd have to gauge by looking at her whether it was normal."
Sometimes, says Colville, "you might have someone who's become so anxious that they ask everyone they meet around their loved one's bed the same question and get different answers every time, which only adds to their sense of confusion and anxiety. You need to 'save up' your questions over the course of the day, and ask one key person - maybe the nurse in charge."
In the paediatric intensive care unit at St George's, Colville is pioneering a model of care for relatives with very sick children which could, she says, be helpful across the NHS. "We offer the services of a psychologist to help parents of very ill children understand what's happening and what's going to happen, and we help them to access the people they need to talk to and to find their way through the system."
Many relatives worry that their questions will be thought silly, inappropriate or, even worse, rude, but they needn't, says Louise Conway, lead nurse in the renal unit at Manchester Royal Infirmary. "Communicating is a big part of what we do, and we genuinely want people to ask the question that's bothering them, whatever it is," she says. "People ask me, as I'm about to change a tube or do an injection, 'Have you washed your hands?' - and I really am pleased to hear it, because it means they're aware of the issues in hospitals and they know we're approachable enough to ask those kinds of things. Whether it's issues such as is my dad eating enough, or has he had physio today, or do you know when the test results will come through - whatever it is, you really do need to ask. Don't bottle it up".