There are certain things Vera Brewer was and was not told after her sister Irene Godfrey's death in October last year, at the Oxford Heart Centre. While she believes she was kept in the dark, the Oxford centre, for its part, points out that it operates a policy of duty of patient confidentiality.
Vera Brewer was not told, for instance, that after her sister's valve replacement surgery in September, a surgical swab had been left inside her body when her chest was closed post-operation. She also had no idea that there were four further operations to retrieve that swab, or that a DNR (do not resuscitate) order had been made. After Irene Godrey died a month later, all Brewer was advised was that no post mortem was necessary.
Vera Brewer is one of several relatives who this week are expressing concern over patients' and relatives' rights to information in the medical arena. In the light of an NHS inquiry, the Oxford centre's chief executive, David Highton, has set out to assure families that his hospital shared all information "relevant to the care of their relatives". Yet those relatives believe that that promise was not met. They allude to a "culture of secrecy" that patient's representatives have long lamented, adding weight to the push for greater openness in the health service.
Joyce Robbins, co-director of the campaigning group Patient Concern, claims to hear stories similar to the Oxford case all the time. She cites the frequent complaint that carers are often denied vital information about their patients on account of the Health Records Act and the Data Protection Act.
"I recently met a man whose wife had cancer and he had to look after her at home," says Robbins. "He needed to know when she was going to be discharged, when she needed to go back for check-up and what she needed as medication. But the hospital said they could only supply her - not him - with the information which was no good because she was drugged up to the eyeballs and couldn't remember a thing."
This is the paradox of patient protection. While the law entitles any person to see information held about them by doctors and health authorities, nobody else can access medical records without the patient's consent. It is a misplaced kindness that backfires the moment a patient is rendered incapable of giving permission. A family member would have to obtain a court order to get access to a relative's most basic medical records.
As Robbins notes: "It is hospitals trying to do the right thing, but it seems a bit ridiculous that, when you've been lying where there's only a curtain between you and the rest of the ward and every stranger in the room can hear, your family is then denied necessary information for your care."
The row in April over DNR orders being assigned to elderly patients without their knowledge highlighted new concerns over patient and relative consultation. When the health secretary, Alan Milburn, later stepped into the controversy to insist that hospital trusts produce a document stating their policy, he put an end to the illicit practice but not to the qualms that some doctors obviously feel when discussing such matters.
Clare Rayner, president of the Patient Association, says: "Very often doctors don't tell patients news because it's too unpleasant or because they think it might upset them too much and delay their recovery. It is a culture of silence left over from the 50s, when it was considered good, honourable practice not to tell a patient they had cancer."
Fifty years on, diagnosis concealment is near extinct in the UK. However, what exists in its place is an equally problematic culture of blame that encourages the masking of medical mistakes by health practitioners. Knowing that hospitals are likely to punish and families are keen for recompense, doctors are less likely to admit their errors outside the surgery walls, she argues.
Rayner believes that access to more information from the health service will only be given once we accept medicine is not a 100% accurate science. "Every screening, every operation and every diagnosis is a gamble," she says, "and we must learn to accept that medical help involves an element of risk if we are to get rid of this face of clinical judgement where individual doctors decide what patients can and can't be told."
The campaign to assert some control over individual medical notes continues to grow. One system that is commonly advocated is a "living will" policy, similar to that which exists in America. In order to assure some kind of control over medical notes, this involves patients detailing who they would and would not like to know about their condition, before seeking medical treatment.
"That's something we are telling people to do," says Robbins. "It's a little piece of authorisation that people just don't think of. Some say it's a bit creepy but I think that, if it's part of the medical procedure as it is in the States, it would save a lot of trouble."
More ambitious is the policy of the Actions for Victims of Medical Accidents group. Chief executive Arnold Simanowitz says the organisation supports a complete change of system in the UK, whereby conscious patients keep their medical records with them.
"There have been a number of experiments in that area and they have all turned out to be very successful," he says. "There is a lot of anxiety on the part of the profession about patients knowing what's going on, but whenever patients have been informed it has always been a good thing. It would also mean that if that patient dies, their information should go to the next of kin."
Like other patients' campaigning groups, Simanowitz argues that problems nearly always stem from a culture of secrecy. Realising that openness and confidentiality should both be adhered to he suggests health practitioners should start with the premise "that you've got to be open and have access to your information" and only diverge from that when it conflicts with issues of confidentiality.
"It would mean a complete system overhaul," says Simanowitz, "but if you start being open and honest from the start, then the patient, the families and the doctors are much more likely to get a fairer ride."
