Jane Kelly

Rules for loneliness

The NHS obsession with patient confidentiality makes it harder for non-relatives to visit the sick and dying

Rules for loneliness
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An old acquaintance died recently. A friend of mine, who was closer to him than I was, rang to tell me. She’d known him for 40 years and looked after him at various times when he fell ill. He was diagnosed with cancer three weeks ago and died suddenly in hospital last week. She tried to find out what happened, but as she is not next of kin (he had no relations) she will probably never know. Within the monolith of the NHS, patients, particularly the elderly, are able to disappear from view as effectively as prisoners in the Soviet gulag. If they don’t re-emerge alive, no except a close relation can discover why.

I first realised this two years ago when I moved from London to Oxford, and tried to carry on volunteering as a hospital visitor. A neighbour broke her leg. When I arrived at the hospital, it proved impossible to see her. ‘If you don’t know which ward she’s on we are not allowed to tell you,’ said a woman on the front desk. Of course I got in by going through a side door. On the ward there wasn’t a nurse in sight to stop me.

This silly secrecy about patient identity or ‘safeguarding’ is a recent NHS obsession. In Oxford more than London, I found every-thing done by the book; a patient told me he was going to kill himself when he was discharged, with details of how he was going to do it. When I reported it, a nurse told me it was not my business.

I gave a man with two broken arms a drink, which was on the tray over his bed. This was noticed by a nurse and reported. Shortly afterwards, I was told by phone not to come to the hospital any more because I had ‘endangered’ a patient and there had to be an inquiry. I was cleared, but warned not to do it again.

I also saw other damaging effects of this ideology. A man of 95 was being discharged. There was no one at home waiting for him, he said, and he’d like a visitor. He told me he belonged to a local church and so, at his request, I contacted them and asked someone from their pastoral team to visit him. That was strictly against the rules as well, I was told. I gave up the hospital job.

In London, I had been told that as a visitor, I was ‘befriending’. In Oxford that proved almost impossible. Last week I discovered through a chance conversation with an NHS press officer in a pub that, as well as the Data Protection Act, introduced in 1998, Oxford is dominated by the Caldicott rules.

These are the work of the redoubtable Dame Fiona Caldicott, 76, an architect of the NHS culture of secrecy and ‘safeguarding’. A former psychiatrist, she is chair of the Oxford University Hospitals NHS Foundation Trust. You may have seen her on University Challenge at Christmas, failing to answer a science question. In 1996, while she was principal of Somerville College, Oxford, she headed the Caldicott committee on patient-identifiable data in the NHS. This resulted in the ‘Caldicott principles’, which led to the creation of ‘Caldicott guardians’, who now oversee data protection in every hospital in the land.

Anyone who enters a British hospital, to see a friend, visit someone lonely or say a prayer by a dying person they may not know, will be judged by these principles, which insist that everyone must justify their reason for seeing a patient, the assumption being that you probably do not need to be there at all. If you are not related to the patient, you fall under particular suspicion. Bad news for people like me who have no relatives, only friends.

These principles were followed by 16 other protocols for secrecy, including the injunction: ‘A programme of work should be established to reinforce awareness of confidentiality and information security requirements among all staff within the NHS.’ And more chillingly: ‘The NHS number should replace the patient’s name on Items of Service Claims made by GPs as soon as practically possible.’

In all the meetings held by the Caldicott committee, no one seems to have looked at the consequences of the principles. It’s not just a patient’s visitors who find it trickier to help, but their doctors too. It’s no longer possible for a doctor to discuss anything about a patient with the person’s relatives, let alone friends. Doctors may not use their discretion; they need permission — but the most vulnerable, neediest patients are often incapable of giving permission.

Dame Fiona’s rules have also created a culture in which hospital managers, a very secretive group, can conceal their agendas from medical staff. Last year came another review, which argued that ‘the public should be engaged about how their information is used and the benefits of data-sharing, with a wide-ranging consultation on proposals as a first step’.

It made clear that when it comes to sharing information, the balance is still not right, suggesting that confidentiality is coming before care, and that it should be the duty of agencies to share information where it is in the interest of the patient. A poor hand-over of information between care teams risks patient health. The report found that some NHS managers are still ‘unduly restrictive’ with information, for fear that their organisation will be fined for breaching data protection laws. It also highlighted that the public’s lack of access to their own records causes ‘great frustration’.

Well, exactly. Confidentiality is coming before care. I could not do my voluntary job in that atmosphere of regulations and secrecy. The truth is that, despite the paranoia of bureaucrats, the dangers which the Caldicott principles seek to protect us from are really not that great. Hospitals aren’t surrounded by criminals waiting to prey on vulnerable patients, and most patients long to be visited by friendly, neighbourly people. It seems particularly sad that an eminent psychiatrist such as Fiona Caldicott should have introduced measures which have only perpetuated loneliness and distress.