Helen Wilkinson

Part of the debate – in the House of Commons at 5:55 pm on 16 June 2005.

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Photo of Paul Goodman Paul Goodman (Also PPS To the Chairman of the Party), Work & Pensions & Welfare Reform 5:55, 16 June 2005

I am extremely grateful to Mr. Speaker for granting me this Adjournment debate, in which I want to tell the story to date of my constituent, Helen Wilkinson, and her medical records.

The story raises profound issues in relation to civil liberties, especially privacy and confidentiality. Before I tell it, I want to set out for hon. Members' benefit only one of the possibilities that it raises. I want hon. Members or anyone who reads the debate to imagine that they have a medical problem, such as a sexual dysfunction problem. The person concerned goes to see a doctor, who enters notes about the problem on his or her computer. The problem is successfully treated. Years later, a senior receptionist at another practice meets the recovered patient socially. The receptionist thinks, "I wouldn't mind finding out a bit more about this person." The next day, the receptionist—unethically and illegally—accesses the recovered patient's doctor's notes, which are held on a national NHS computer database and ferrets out private and confidential details, to whatever end, without, of course, the recovered patient knowing anything about the breach of privacy.

I could suggest myriad other disturbing possibilities that the story of Helen Wilkinson raises. I sketched out one simply to give a flavour of them. Without further ado, I shall tell Helen's story so far.

Helen works as a national health service practice manager. Indeed, she has worked in the NHS for some 20 years. So when it comes to the NHS, NHS offices, staff, patients and records, it can fairly be said that she knows what she is talking about.

Some time ago, Helen discovered that the University College London Hospitals trust had sent computer records of every hospital medical treatment that she had ever received to a private company, McKesson, which holds a mass of NHS records. Those records are then passed on, as Helen's were, to computer systems used by the NHS. Helen's records thus became available to several NHS bodies, such as the Thames Valley strategic health authority, Wycombe primary care trust and so on.

Helen asked to see her records under the Data Protection Act 1998, as she is fully entitled to do, and she discovered when she examined them that there was a serious mistake in them. She was effectively and, I repeat, mistakenly, registered as an alcoholic. Helen resolved, given her anger about the mistake, her concern about the many people who have access to even the correct parts of her record, and her anxiety about the even larger number who might well have access to it as the NHS computerisation programme proceeds, that she wanted her records removed from NHS systems altogether.

It is important to explain that, as matters stand, NHS patients have the right to object to data about them being held in a form that identifies them, but only when that causes or is likely to cause substantial or unwarranted damage or distress. It is not clear, if those data are held by a number of NHS bodies, as Helen's are, who decides whether damage or distress is caused or is likely to be caused.

I wrote to the then Minister responsible, Mr. Hutton, last autumn.

It being Six o'clock, the motion for the Adjournment of the House lapsed, without Question put.

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Cawsey.]