HC Deb 23 February 1990 vol 167 cc1227-40

Order for Second Reading read.

1.30 pm
Mr. Doug Henderson (Newcastle upon Tyne, North)

' I beg to move, That the Bill be now read a Second time.

I thank my sponsors for helping me to prepare the Bill—both in the drafting process and in the meetings and consultations that have taken place. I understand better after that experience what an onerous task is borne by those regularly involved. I also thank the Clerks and others who have helped me with some of the legal niceties involved. Without their help, I do not think that I should have been able to prepare the Bill.

I had three principal reasons for introducing the Bill. First, it is an important principle in any democratic society that an individual should have the right of access to records held about him—in most cases by Government and local government institutions. I believe that the House has already recognised that principle by accepting a number of provisions in recent years. The Government themselves introduced the Data Protection Act 1984, which extended citizens' rights considerably. Another Government measure, as early as 1974, was the Consumer Credit Act, which again extended citizens' rights in relation to credit references held on their behalf. The Access to Personal Files Act 1987 extended important civil rights in relation to housing and social work records, and the Access to Medical Reports Act 1988 extended rights in relation to records submitted by general practitioners and retained by employers or insurance companies.

The principle encompassed in the Bill has already been accepted by hon. Members on both sides of the House. That is a source of some pleasure, as there are not many issues on which hon. Members of all parties feel equally strongly. Those earlier measures have enjoyed considerable support, and I hope that my Bill will, too.

In practical terms, the Bill cannot cause difficulties for GPs, consultants or other medical people. Instead, it will help to foster the relationship between medical practitioners and their patients. Some GPs have gone along with the principle and for many years have opened their records to patients. Earlier this week I talked to a GP from the midlands who for the past 10 years has operated an open system. He had found that both he and his patients had benefited and that it had helped to improve trust and confidence between them. At the moment, however, doctors are privileged to operate such a system and patients are privileged to attend a surgery that operates it. But such a system is operated on a voluntary basis and, although voluntary codes have been considered, they have not had the desired effect and we need legislation to extend that privilege and make it a right that all of us can enjoy.

The Greater London Association of Community Health Councils has been active in surveying opinion on this matter. It surveyed its general practitioners, who stated without equivocation: Complete access to the records gives the patients trust and confidence in their general practitioners. Good general practice is a partnership between patients and doctors. I believe that patients increasingly want to know details of their medical condition. By and large people do not want to be kept in the dark. They want to know about their health so that they can face realistically treatment or any change in life which may be necessary if they are to maintain their health and enjoy the rest of their lives. It helps most people enormously—although perhaps not everyone—if they have that right to access.

I shall now consider the evidence of the demands for access by patients. One study has shown that only 40 per cent. of people recovering from heart attacks had been told the cause of their illness while 90 per cent. of those people said that they could have faced up to their illness and dealt with the suggested treatment better if they had been told of the cause in the first place.

Another telling study was carried out among sufferers of multiple sclerosis. Hon. Members who know sufferers of MS will be aware that it is a very debilitating disease, especially in its more advanced stages. The survey showed that 83 per cent. of MS sufferers who were asked believed that they could have faced up to the treatment, the change in lifestyle and the things that had to be done much better had they been told about their condition much earlier. Only 30 per cent. of those people said that they had been told by their GPs sufficiently early to face up to the illness properly.

More evidence can be found in a written answer in Hansard on 1 February. The Under-Secretary of State for Health said that the Department's consultation exercise had revealed a clear balance of opinion in support of a right of access."—[Official Report, 1 February 1990; Vol. 166, c. 354.] All that evidence reinforces a point which most hon. Members and people outside this place recognise—that there is an increasing demand for access to information. I have occasionally heard a general practitioner or consultant claim that the Bill is all very well, but there may be terrible repercussions with medical people being inundated by people crying out to see their medical records. I understand some of those fears, but I do not believe that they are realistic. I do not believe that the Bill will lead to a flood of requests for information. That is not its intention.

The Bill's intention is to change the general climate of the relationship between a medical practitioner and a patient so that the practitioner will err on the side of telling the patient more about his disease and so that records will more accurately reflect the patient's medical problems and the proposed treatment.

There are safeguards in the Bill, but I am happy to consider others if it receives a Second Reading and goes into Committee. The Bill contains provision for a small charge to be made for a photocopy of a patient's medical records. That charge would deter a frivolous application to see records. If hon. Members feel that other means might deter the frivolous application, but at the same time strengthen genuine applications, I should be happy to consider their suggestions.

Mr. Andrew F. Bennett (Denton and Reddish)

Does my hon. Friend accept that obtaining the rights for people to see records has been a slow process? Fears that revealing records will cause a great deal of extra work have been expressed by many people. However, in education and other areas where rights to access have been granted, the problem of many people making frivolous applications has not occurred.

Mr. Henderson

I am grateful to my hon. Friend for reminding me of that point. His helpful intervention reinforces the point that I was attempting to establish. My hon. Friend has a special interest in many of these matters.

Mr. Eddie Loyden (Liverpool, Garston)

I congratulate my hon. Friend on introducing a widely welcomed Bill. Will the Bill benefit one of my constituents who, for about 10 or 15 years, has been attempting to get access to his medical files? An early diagnosis was that he was virtually an invalid for the whole of his life, and a later diagnosis proved that the first was erroneous.

Mr. Henderson

I am grateful to my hon. Friend. Unfortunatelly, I cannot assure him about historical medical records. This Bill applies to medical records from January 1991.

The Bill would change the general nature of the doctor-patient relationship. Perhaps my hon. Friend's constituent would have voluntary access to his medical records. If that is one by-product of the Bill, it would be helpful.

Another reason for introducing the Bill is that many records are inaccurate and incomplete. A general practitioner told me that when records are transferred from one general practitioner to another—a fairly frequent occurrence as people move house—one in four records is found to be either incomplete or wrong. I have no reason to believe that that is an unrealistic assessment. That general practitioner often had to refer to a previous medical practitioner and ask for clarification. The Bill would encourage medical practitioners to have accurate complete records that a second medical practitioner could consult when providing treatment. That is a practical benefit.

Many people have complained to me about misfortune that they have suffered because of erroneous medical records. We live in a society in which there is an increasing number of records for all sorts of things. That is inevitable and we must face it. That is one reason why the Data Protection Act 1984 was such an important move forward. It is inevitable when records are kept that errors will be made from time to time. I do not claim that my Bill will ensure that there are no errors in the future, but it will concentrate the minds of those who keep records to make sure that they are accurate if a patient is likely to ask for access. That is one of the most important by-products of the Bill.

Many people have approached me to complain of their predicaments. Hon. Members will recognise that it would not necessarily be in my interest or that of the sponsors of the Bill to catalogue those cases, but I shall illustrate my point by referring to two. A lady approached me and told of her terrible mental difficulty when she was told that she had cancer of the ovaries. She had intense problems because of that information. By accident, she happened to come across her medical record. Hon. Members can imagine her joy when it was explained to her that she was actually in the early stages of pregnancy and was not suffering from cancer. If she had had access to her medical records and if they had been kept more accurately, the pain and suffering that that lady experienced could have been avoided.

In another case, a record was filed under the wrong street number. The gentleman who contacted me was suffering from terrible mental depression. The doctor had told him that he must get his act together quickly because, if he did not, there would not be much of his life left. He was told that his problems of alcoholism were having a damaging effect on his whole life. Hon. Members may see a similarity with the conditions which some hon. Members perhaps face, but I assure them that this gentleman was not a Member of the House. He was a teetotaller who lived at No. 28; the alcoholic lived at No. 26. Again that was discovered by accident. The treatment that he was receiving was completely unrelated to the cause of his depression.

Such errors are bound to happen in a complicated and mobile society. As I said, the Bill will not necessarily illuminate all errors but it will help to concentrate the minds of people who are responsible for the retention of records.

There are many other examples of errors. I am astounded by the number of letters and telephone calls that I have received from people, especially since the Bill received some publicity earlier this week. That shows the strength of feeling of people who have been victims—who have had a raw deal and hope that others will not face the same trauma and problems as they did.

A third reason for introducing the Bill is that it would create consistency. Currently, if medical records are maintained on computer, a patient has access to them under the Data Protection Act 1984. The British Medical Association believes that the vast majority of medical records, especially those of general practitioners, are kept on a manual, not a computerised basis. It is difficult to be accurate on the exact proportions, but the House would not be far out if it recognised that 75 per cent. of medical records are maintained manually.

I am aware that the hon. Member for Torridge and Devon, West (Miss Nicholson) is present and may seek to catch your eye, Madam Deputy Speaker. She is something of an expert on computers and may be able to enlighten those of us who are still in the dark.

Some people may argue that there are circumstances in which it would not be proper to provide access to medical records. I acknowledge that that is the case. Where the GP believes that to provide information would cause damage to the patient, a third party or the doctor, he must be able to say that it is not appropriate to provide the information. The Bill makes provision for that.

Similarly, if the provision of medical information would implicate another person, perhaps a spouse, the Bill provides for the medical practitioner to say that the information should be held back. Similar protections are included in the case of children who have given information in confidence to a doctor and whose parents subsequently seek that information. There are exceptions to that where the child is too young or too ill to give consent.

The Bill has a wide base of support. Hon. Members from all parties have said that they personally support it. A poll by the Consumers Association showed that 91 per cent. of the public believes that there should be access to medical records. I have had representations from over 70 organisations, including important bodies such as the Law Society, the Royal College of Nursing, the Royal College of Midwives, the Health Visitors Association and the Consumers Association. Many patients have rung me to tell me of their support. An increasing number of doctors recognise that it is important that their relationships with patients are seen to be open and above board. They are beginning to believe that it is an important matter which should be approved by the House.

There is an overwhelming case for the Bill. There is a democratic case. In the latter years of the 20th century people should have the right of access to records held on their behalf by the state, local government and other institutions. There is a practical case for ensuring that errors do not occur and that records are kept more accurately. There is also a case based on consistency so that people whose records are held manually have the same rights as people whose records are held on computer.

The measure can be approved by the House at no cost to the Government and at little cost to citizens. Where a copy of a record is required the cost will be borne by the person seeking the information. The Bill will not eliminate all errors, nor will it help everyone to come to terms with his problem. It will not guarantee that every medical practitioner will be more open in his dealings with patients. However, it will help to generate a new climate in which medical practitioners will be more open, records will be kept more accurately and more people will have trust in their doctor. If employers, insurance companies, other doctors and Government Departments can see our medical records, I can think of no reason why we should not be able to see them. I commend the Bill to the House.

1.50 pm
Miss Emma Nicholson (Torridge and Devon, West)

If the Bill does not go through we shall compound a situation that results in misdiagnosis, mistreatment, and inefficiency. One case shows clearly how the refusal to disclose medical records to the patient resulted in misdiagnosis. The case is one of many.

A lady called Diane Carlston was defined as having Munchhausen syndrome—the fabrication by an itinerant malingerer of a clinically convincing simulation of disease. The unreasonableness of that suggestion can be gathered from the following. She had been operated on four times in the preceding four years and was ill enough to have been retired as a district nurse on grounds of ill health. She was given an invalidity pension by the health authority, and I do not suppose that such a pension is easy to come by. She was receiving invalidity benefit from the DHSS and had twice been certified as unable to work by a DHSS doctor who had told her, "There is no question of your working at present."

The most conclusive evidence that Diane Carlston was not malingering was that she had already taken herself off invalidity benefit and was working again part time as a general practice nurse. The Munchhausen diagnosis came after she had had a hysterectomy and her own general practitioner questioned whether she was genuinely ill at all. In fact she had a wretched condition, one that may make some hon. Members rather ill when I discuss it, but that is what I have to do. It is called endometriosis, and is an especially horrible condition that affects the lining of the womb. The lining works loose and becomes attached to other parts of the body. By the time she was operated on half the lining of her womb was attached to her bladder. She had been in great pain and misery, and had a most unhappy and wretched time. Her general practitioner had said she wanted a hysterectomy despite medical advice to the contrary and that she had got it because she manipulated people. He concluded with the devastating comment: In view of her multiple complaints I almost suspect that she is a case of Munchhausens syndrome. It is interesting that at that time the lady was able to find her own record simply because she was in the medical field. Because she discovered that comment, she was finally able to see how poorly she was being cared for by her general practitioner. She confronted him with the letter and asked him to justify it. He said that he did not know much about endometriosis. She left his practice and signed on with another general practitioner and is delighted with his care. She has given me permission to quote her case.

That was a case of misdiagnosis, and the lady was not given the best treatment. I am aware of another case of mistreatment that would have been corrected had the patient seen her medical records earlier. Ms. B was diagnosed as suffering from myalgic encephalomyelitis or post-viral fatigue syndrome. She was questioned by a psychiatrist to whom her general practitioner had referred her. He asked her many questions about her youth, her parents, and so on. She said that he was very sympathetic until I mentioned how my problems started after I'd contracted glandular fever". Any hon. Member who has suffered from glandular fever knows that it is a pretty hefty disease, from which it takes months to recover. Not unnaturally, one feels pretty poorly for a long time afterwards. Ms. B. continues: However, before I could finish what I wanted to say, he stood up, walked towards me and repeated that I had not suffered from glandular fever. He had spoken to the GP and read my notes. He told me I was lying! Mercifully, she was studying psychology at the time. Although her psychiatrist was telling her that she had "a hysterical personality", she was considered by the remainder of society to be psychologically trustworthy enough to be studying psychology. She managed to see her medical records. It is clear to me that if one wants to see one's medical records, one needs to be working in the Health Service. She saw a tiny comment in the corner of a page that she had had a recurrence of glandular fever, but that knowledge had not been carried forward. She wrote to the GP who had diagnosed the glandular fever and received a letter from him confirming his diagnosis. He added that his blood test had demonstrated the presence of antibodies to the Epstein-Barr virus, which causes glandular fever. She was misdiagnosed and then mistreated. Presumably, she must have added to the welter of prescriptions that general practitioners dish out every year for anti-depressant drugs.

May I raise a third case, in which the failure to disclose medical records led to inefficiency and mistrust? The parents of Jenny Shaw, who is now aged six, noticed that she had a severe squint when she was less than two years old. Sometimes, it is difficult surgically to correct squints in children. Her parents, following guidance from their general practitioner, regularly took her to the local hospital. It said that an operation would not help and should not be tried for some time. There were two sets of records—one with the GP and one with the hospital. As the child was attending the hospital, the record on her squint was built up by the hospital.

Her parents moved from the constituency of the sponsor of the Bill the hon. Member for Newcastle upon Tyne, North (Mr. Henderson), to St. Albans. The child is just six, and when she started school the school medical officer noticed her squint and referred her to the local health centre. Her parents went with her, delighted that someone should be picking up the problem, and an ophthalmologist saw her.

Those parents were accused of neglecting their child. They are very intelligent people. The father is an independent television producer of international note. They were quick enough off the mark to dispute that and to ask, "What do you mean?" Eventually, they got to the bottom of the story. The hospital records had not arrived, many months after they had moved, at the health centre, which was working only on the GP's records. As I have said, for good reasons that record showed little information. Less articulate parents could have had their relationship with their child damaged by that accusation, which was carried forward and held to be consistent. More important, a wrong decision could have been taken as the consultant was quite naturally recommending an immediate operation. After many more weeks of endless telephoning, the record has still not arrived at St. Albans.

Is it any surprise, therefore, that the Royal College of Nursing—I have the honour of being on its parliamentary panel—wrote to me yesterday urging me to support the Bill and saying that it was delighted that I was a sponsor of it?

On balance the RCN has concluded that the damage to patients incurred through non-disclosure of medical records far outweigh the damage occurring through disclosure of medical records. The letter adds that the voluntary code, which was entered into recently, had proved inadequate and that people in the medical profession were not honouring it.

Patients quite clearly want access. It is to the credit of the GPs that nearly all of them in the Greater London area, for example, when polled on the subject, in support of the Bill, wanted it—80 per cent. of them said yes; they felt the benefits outweighed the dangers.

Of course, there is a downside to this subject. GPs and consultants worry that their work may be hampered. To help us consider that point of view, and to weigh it properly, we must consider that these are health care experts of great renown, intelligence and experience—some in my own constituency. Perhaps we should consider what the record contains about us as patients of the National Health Service. It contains three elements. I postulate that it contains fact, opinion and fiction. I make the last suggestion, because we need to consider who provides the information.

A health care record is not how one would imagine it to be. It contains information provided by all and sundry, and let me identify our friend sundry. I shall give an accurate list of what a medical register entry in a hospital includes. This is taken from an actual health authority registration—forests have to be cut down in Brazil regularly to keep this hospital going and I do not think that it is alone.

The list falls into three parts, with data initiated by three categories: first, individuals or organisations directly associated with the data subject—not a patient, but a data subject—family, relatives, guardians, trustees, other members of their households, friends, neighbours, employers—past, current or prospective—legal representatives, financial representatives, doctors, dentists, other health advisers, social, spiritual, welfare, advice workers—what is an advice worker? The list continues with other professional advisers and landlords. The second category includes individuals or organisations directly associated with the data user: employees, agents, suppliers, providers of goods or services, persons making an inquiry or complaint. The third category includes general and sundry organisations: the Department of Education and Science, the Department of Health, the Department of Employment, the Ministry of Defence, including armed forces, local authority hygiene, education, social services, electoral registration and valuation departments, prosecuting authorities, police forces, courts, magistrates, the prison service, the probation service, public utilities, employment and recruitment agencies, voluntary, charitable and religious organisations, education or training establishments, examining bodies, survey or research organisations, suppliers of computing hardware and software, and patient support organisations. Those are sundries.

Mr. Michael Stern (Bristol, North-West)

Is my hon. Friend emphasising that the need for the Bill is caused by the fact that the majority of the organisations that she has mentioned would have supplied information for the health records that would never have been known to the individual concerned? The individual would not previously have had an opportunity to check the accuracy of that information before it found its way on to the health records.

Miss Nicholson

Yes, who checks it? Nobody? Who could check it? Under the Data Protection Act the patient could check it if the knowledge or information was stored on an electronic record. A fee would be payable, which I regard as disgraceful, but nevertheless that is the way the Act works. However, under the Lloyd George system with paper records—an excellent system dreamt up with a unique patient number in 1907—the answer is no, the patient is not allowed to check it. We should not run away with the idea that the information is confidential in the way normally associated with knowledge so vital to the individual.

I am referring now to the paper record—the Lloyd George record—which is seen by, for instance, medical receptionists: I have a list of worries expressed by patients whose notes have been seen by receptionists. According to Doctor, Most practices allow receptionist relatively unrestricted access to notes—arguing that this is essential in the interests of efficiency. It is clear from the welter of statements that I have received that, although that practice may increase efficiency from the doctor's point of view, it has made patients uneasy and unhappy and has destroyed their sense of privacy and security. Information has been given out that they assumed to be confidential to the health care professionals. Anyone who sits in the cloisters here will know that cleaners, and anyone else who happens to walk through, can see such material—although that is no reflection on the quality of service provided by our staff.

I do not suppose that many hon. Members who are present today—if any—have seen the form that accompanies a smear diagnosis. Such forms contain a good deal of information. That little piece of paper floats around quite openly, and it is possible for laboratory assistants to track down the person to whom it relates and to learn whether she has cervical cancer.

There is also the problem of computerised records. Understandably, GPs have entered into contracts with drug companies to obtain free software and hardware—for they are rapidly entering the modern world. In return for what they have obtained, which they could not have obtained from other sources, GPs are passing to drug companies—on a regular, permanent, contractual basis—a vast stream of information about patients' prescriptions and drug-taking habits. That is of major importance to the future of the drug companies, and, therefore, to ourselves. The data are depersonalised, in that people's exact details are removed, but none the less the practice is a new development in the distribution of, and access to, medical records data.

Worrying things are also happening in the hospital world. In one London hospital alone, 800,000 records are on line on mainframe computers. Under a new Bill that is now in Committee, when medical services are contracted out to different parts of Britain—which, incidentally, I support, because it will be the most effective way of cutting waiting lists and providing early care for patients—the receiving hospital must know the patient's full medical details. The material is passed not by doctor to doctor, but by clerk to clerk, on an open network. Confidentiality means something very different today.

Perhaps the best concept is the smartcard, which is part of the new method of accessing and storing material. It is a small plastic card, the same size as those cards that we put into the wall—only to be told by the bank that there is nothing in the account, or that it is the wrong card or the wrong wall. The smartcard, however, is much better: it contains a microchip that plugs into a mainframe computer through a personal computer, providing access to all our health care data. The data is partitioned, which means that different health care professionals have access to different parts of the card and the mainframe data.

When the then Health Minister—the hon. and learned Member for Putney (Mr. Mellor)—launched the card last March, he declared that the data belonged to the patient. The smartcard therefore allows the patient access to and ownership of the data, which is a welcome development.

There is conflict between the Department of Health and the Treasury, which has stated that data on a patient belong to the Secretary of State for Health. That adds 54 million medical records to the already heavy burdens that are carried by my right hon. and learned Friend. Therefore, he farms out the work to the local general practitioner committees.

The Lloyd George mechanism is wholly outdated. By far the most outdated concept is lack of access to data held on paper records. Whether it is a smartcard, or hospital data, or general practitioner computerised data, the patient has access to that information and significant rights. My aim is to enhance patient rights.

Logically, the Government ought unhesitatingly to support the Bill. The patient has access to computer records under the Data Protection Act 1984. Social work records are also accessible by means of the Access to Personal Files Act 1987. People have access to housing records by virtue of the same Act. It will soon be possible to gain access to school records. From September 1990 those records will be available to parents and older pupils. Doctors' reports on employees, which are provided to insurance companies, have become available under the Access to Medical Reports Act 1988. Credit reference records have been ours to look at under the Consumer Credit Act 1974. Whether we like it or not, we are being dragged into allowing individuals to have access to information about themselves.

Mr. Andrew F. Bennett

Dos the hon. Lady accept that she is in danger of talking out the measure? If she would like it to reach the statute book, ought she not enable us to give the Bill a Second Reading by 2.30?

Miss Nicholson

The hon. Gentleman reminds me that I am on my last sentence.

The Bill is a small but crucial element in a much larger puzzle. The puzzle is about information, access, distribution and ownership. If the Bill is passed, the patient will be the beneficiary.

2.12 pm
Mr. Stuart Randall (Kingston upon Hull, West)

I congratulate my hon. Friend the Member for Newcastle upon Tyne, North (Mr. Henderson) on introducing the Bill. It concerns an important subject.

We have to ask whether there should be a statutory or voluntary right to access to medical records. The Opposition believe that by law people should be granted access to medical records. If patients were allowed only voluntary access to medical records, it would be difficult for them to exercise that right. The public are desperate for change. They are impatient to have this information. People ought to have the right to see their medical records. A minority of doctors should not be able to frustrate their demands. A voluntary code would allow doctors to frustrate their demands.

Britain must become a more open society. If we give the Bill a Second Reading, we shall be taking an important step in the right direction. The principle that there should be access to medical records is irresistible. If the Bill is not passed, the matter will inevitably be raised again and again.

I am sanguine about the prospects for success. From the information that I have received, it would seem that a large majority of doctors support the idea of patients having access to their files. Some doctors already discuss with their patients details of their medical records quite openly, and have been doing so successfully for some years.

An opinion poll carried out by the reputable Campaign for Freedom of Information, as reported in General Practitioner on 3 November 1989, shows the results of a survey on the attitudes of general practitioners. The article states: More than half (580) of the 1,085 GPs who responded said they would not object to a legal right of access, though this might be time consuming and affect their style of note-taking. Over a quarter (281) said they would welcome such a right and some thought patients should keep their records … Only 17 per cent. (171) said they would not normally allow patients to see their records and objected to a legal right of access. There appears to be good support from the medical profession at grass roots level for more openness. The Bill merely extends in principle what already exists under the Data Protection Act 1984.

The Bill would pave the way for more efficiency in the medical profession. In a very illuminating article in General Practitioner on 14 October 1988, Dr. Elizabeth Scott wrote that access to files would make GPs smarten their diagnosis and files. Clearly that would be good for patients. She commented on why she feels that there is still some opposition to openness: In time gone by when doctors spoke only to doctors there were elements of prose that, although expressive, would not please. I have now edited and destroyed these unnecessary missives. So consultants who may panic at the idea of some of their sallies coming home to roost can sleep easy. I have always suspected that this is the main reason that doctors are shy of letting their patients roam about their notes. That is a doctor's views about why some in her profession do not support the idea of openness.

I do not think that anybody inside or outside the medical profession can justify allowing medical records to be prepared in a slapdash way. Clearly that can lead to errors with possible serious consequences. The Bill therefore would create a valuable incentive in eliminating such bad practices.

There is much to say and others may want to say a word or two, but I believe that the Bill is long overdue. It is very welcome in the House and in the country generally as a progressive and irresistible step in openness.

2.18 pm
The Parliamentary Under-Secretary of State for Health (Mr. Roger Freeman)

I shall set my prepared speech on one side because there clearly is no time to develop my remarks. The most appropriate way to proceed is to confine my comments to a few general principles.

I congratulate the hon. Member for Newcastle upon Tyne, North (Mr. Henderson) on introducing the Bill and on the courtesy that he has shown during its preparation. Although he came only 12th in the ballot, he has chosen well. The hon. Gentleman raised six points in his concise speech and my hon. Friend the Member for Torridge and Devon, West (Miss Nicholson) raised a seventh. Although there is considerable agreement on the Bill—with important exceptions, to which I must refer—we should not consider this matter too quickly because important points or principle are involved.

First, there is the principle of access. There is no difference between the hon. Member for Newcastle upon Tyne, North and the Government on this principle. My predecessors and I have made it plain that we accept the principle of access to medical records. I have stated that important principle many times, as have the Under-Secretary of State for Scotland—my hon. Friend the Member for Stirling (Mr. Forsyth) and my right hon. and learned Friend the Member for Ribble Valley (Mr. Waddington) when he was Minister of State, Home Office in 1987. So far, no hon. Member has sought seriously to question that general principle.

Secondly, the hon. Member for Newcastle upon Tyne, North said that he had found general practitioners who felt that it was useful to share patient data directly with patients. I can confirm that as a Health Minister who has been to general practitioners' surgeries and seen for himself that some have been only too willing to share data—perhaps on a computer screen or perhaps manually—directly with patients. The general practitioners who have done that have clearly done so after considerable thought, having weighed the consequences for patients and themselves.

The third point concerns openness about disease. My hon. Friend the Member for Torridge and Devon, West touched on that point. Irrespective of the Bill—although the principles enshrined in it reflect that general theme—it is important that doctors should be as open as possible about disease. It is, of course, for each doctor to weigh how far he goes in telling a patient. Safeguards have been built into the Bill. There are circumstances in which the information can be withheld. I very much agree with the hon. Gentleman about some of them. On three, there is no difference of view between the Government and the hon. Gentleman. The explanatory memorandum refers to them: (1) information whose disclosures would be likely to cause serious harm to the applicant or someone else, (2) information about another individual or which would identify an individual acting in a personal capacity (such as a family member) who has supplied information in confidence; (3) where a parent has access to a child's record, information which the child provided in the expectation that it would remain confidential from the parent". There may be other appropriate grounds on which to withhold information, and the Government may wish to add more categories when the Bill is given detailed consideration, but at least we agree with those three safeguards.

The fourth point concerns the value of correcting errors on records. We have heard some sad, but eloquently and concisely expressed, examples, and we share the concern that has been voiced.

Fifthly, this legislation is consistent with existing statutes. The Data Protection Act 1984, as clarified by the orders that followed it, spelt out clearly which information could be withheld. Nevertheless, the law of the land is that patients have the right of access to data held electronically by general practitioners. The hon. Member for Newcastle upon Tyne, North is therefore right to say that his measure is consistent, in the sense that it will open up the right of access to records held manually. His safeguards are broadly consistent with those in existing legislation governing access to electronically held data.

Sixthly, as the hon. Member for Kingston upon Hull, West (Mr. Randall) said, there is public support for the Bill. There is no question but that the weight of correspondence that my office and hon. Members received clearly supports the principles behind the Bill. However, it is important in the minute or two left to me to put or record the concern of senior representatives of the medical profession. It would not be right to fail to record, albeit briefly, their concerns.

The medical profession has said that it believes that introduction of the Code of Practice"— it is referring to the voluntary code of practice that we have been seeking to introduce over the past two years— could seriously undermine the relationship of confidence between doctor and patient. It is an important part of a doctor's professional duty to inform the patient about his condition and to communicate this information in the way that he judges will be most helpful to that patient.….If patients were to come to rely on their own interpretation of doctors' notes rather than on the professional advice of their medical practitioner, the existing doctor-patient relationship would alter fundamentally. ….One foreseeable problem would be the difficulties in interpreting for the patient in a meaningful manner complex medical terminology from a multiplicity of disciplines, eg radiology, histopathology, bacteriology. I hope that my hon. Friend the Member for Torridge and Devon, West will forgive me if I do not answer her points. In summary, we already have legislation giving access to electronically held data. The Bill is consistent with that legislation in terms of safeguards, but would open up access to manually held records. We accept that principle. Serious concern has been expressed by senior representatives of the medical profession about the whole principle of access. Nevertheless, over the past two years, following the commitment of my right hon. and learned Friend the Member for Ribble Valley, we have been consulting on a non-statutory code of practice. We have reached the conclusion that as, after two years, the medical profession essentially says, "We do not accept the principle. We do not believe that a code of practice, whatever it says in detail, is acceptable", we have reached an impasse. For those reasons, we do not object to the Bill. It is consistent and we accept it.

2.27 pm
Mr. Ian Taylor (Esher)

I add my congratulations to the hon. Member for Newcastle upon Tyne, North (Mr. Henderson). He has raised some important principles in which many of my constituents, and no doubt his, have taken great interest.

The House should discuss the principle of the Bill and it is a more than appropriate subject for a Friday. I also pay tribute to one of the sponsors of the Bill, my hon. Friend the Member for Torridge and Devon, West (Miss Nicholson) who, with her customary clarity, has given some moving examples of cases in which patients have had severe trouble as a result of inadequate or misunderstood records. The proposals for health reform will, of course, allow patients to change their doctors more readily. In many cases—perhaps even in cases such as my hon. Friend mentioned—that will come at an earlier stage, with or without access to records, if the patient understands that it is important. In passing, I also compliment her on her facility in pronouncing medical terms, with which I have always had enormous difficulty.

The principle behind the Bill is very welcome. However, I have some concerns about it proceeding in its present form, first, because I am still uncertain about the statutory principle in relation to manually prepared records and, secondly, because once again we appear to be approaching the issue of access to records piecemeal. As my hon. Friend the Member for Torridge and Devon, West said, there are many pieces of legislation on this matter. The Data Protection Act 1984 was initiated partly by a ruling from the European Community and did not so much give protection to data as provide the ability to see electronically stored data so that records could be corrected.

Many other efforts have been made to give people access to records—even to medical records. The hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood) did a good a job in introducing the Access to Medical Reports Act 1988, concerning access to reports for employment or insurance purposes only by the person's general practitioner—

Mr. Tony Banks (Newham, North-West)

rose in his place and claimed to move, That the Question be now put; but MADAM DEPUTY SPEAKER withheld her assent and declined then to put that Question.

Mr. Richard Shepherd (Aldridge-Brownhills)

Will my hon. Friend give way?

Mr. Taylor

No, I shall not give way.

Mr. Shepherd

But my hon. Friend is talking out the Bill.

Mr. Taylor

This creates an admitted anomaly as patients have a right of access to computer records but not to manual records that are stored—

It being half-past Two o'clock, the debate stood adjourned.

Debate to be resumed on Friday 2 March.