Helen Wilkinson

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

Alert me about debates like this

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

I asked the right hon. Member for Barrow and Furness to grant Helen's request. I received a reply from him dated 5 November that explained:

"The removal of patients from the systems that Ms Wilkinson has identified is neither simple nor straightforward".

It added that the ethics advisory group of the Care Records Development Board was considering the matter.

Helen then took a drastic decision, but the only proper decision that she believed was open to her. She decided to withdraw from the NHS as a patient altogether so that her records—including, of course, the mistaken registration of her as an alcoholic—could be removed from NHS computer systems. So, in summary, my constituent argues that she has had to withdraw from the NHS to protect her privacy.

I want to ask the Minister some questions that relate specifically to my constituent. On the "Today" programme earlier this year, her predecessor, the right hon. Member for Barrow and Furness, said in relation to my constituent:

"It must be possible to correct this"— namely, the mistake in Helen's records. That Minister went on to say:

"There is not a problem here."

So, may I ask this Minister whether it would have been possible to correct the mistake, considering the large number of NHS bodies to which the mistaken information was distributed, as so many different bodies held it?

The then Minister also said on the same programme:

"Mrs. Wilkinson does not have to have a national care record if she does not want one."

May I ask this Minister whether that is correct? How can it be correct when a patient has the right to have such records removed only when they are judged to be causing, or to be likely to cause, that patient substantial and unwarranted damage or distress?

In a further letter to me dated 5 May, the right hon. Member for Barrow and Furness said:

"I have directed officials to ensure that her data"— that is, Helen's data—

"is removed from those systems for which the Department of Health is legally responsible as data controller".

May I ask the Minister whether that has happened yet? If not, by what date will it happen?

The former Minister wrote to me in a letter dated 30 November:

"While your constituent may have opted not to seek NHS care, NHS services have not been withheld".

On that point, can this Minister clarify what would happen were my constituent to be, for example, taken suddenly into hospital? Would any notes made go into NHS computer systems? If so, would my constituent have to leave the NHS, so to speak, all over again to get any new records removed from those systems—not that she would have taken any decision to re-enter the NHS in the first place?

I want to discuss some wider issues raised by Helen's story, which I tried to illustrate at the start of my speech. I said that Helen's story raises profound issues in relation to civil liberties—in particular, privacy and confidentiality. It does so partly because her evolving story is bound up with the evolving story of the NHS computerisation programme.

Helen's records, like those of others, are held partly on paper and partly on computer. Obviously, not all NHS staff throughout Britain have access to the paper records and not all NHS bodies nationwide have access by means of their computer systems to the computer systems of other NHS bodies.

That situation will gradually change. As I understand it, the last seven years-worth of records held on the NHS-wide clearing service, or NWCS, which is a hospital computer system, and records held on GP computer systems will eventually end up on the NHS care record service, or NCRS, into which information from NHS Direct will also flow. At this point, it is important to grasp that the Care Records Development Board, to which I referred earlier, is recommending that patients should, in future, as the fully functioning NCRS comes on-stream, not be able to opt out of having a national care record. That is indeed a potential challenge to privacy and confidentiality, with serious civil liberties implications.

Other NHS patients will be as concerned as Helen—some media discussion on the matter has already occurred—about the confidentiality of their records, if those records end up on a national system that a large number of NHS bodies and individuals, including social workers for example, can access. After all, those records will hold data set down by nurses, health visitors, midwives, physiotherapists, psychologists, laboratory staff, sexually transmitted disease and addiction workers, ambulance crews and so forth. It is a long list. Those records will contain information about such sensitive matters as sexuality, ethnicity, genetics, mental health, intellectual impairment, illicit drug use, imprisonment, abortion, contraception, impotence, paternity, infertility, HIV, personal relationships, domestic violence, rape and abuse in childhood—again, a long list.

The right hon. Member for Barrow and Furness set out in his letter to me, dated 4 May, apparent safeguards, which will, in future, he claimed, protect patient privacy and confidentiality. He set those out under certain headings such as legitimate relationships, role-based access control, the patient's sealed envelope, opting out of information sharing, stop noting, and so on. I do not have time, and perhaps it is not my function, to explain to the House what those safeguards are in detail, but I would like to ask the Minister some questions about them, and perhaps if she does not have time to answer all of them tonight, she might indicate that she would be willing to write to me in due course.