It’s Our Right to Know

Personal accounts of people who have seen or needed to see their own health records

This briefing was produced in 1990 at the time of the passage of the Access to Health Records Act, which gave people a right (subject to limited exemptions) to see their medical records. Most of the act has now been repealed as its provisions have now largely been incorporated into the Data Protection Act (1998) however part of the 1990 act, dealing with access to records needed to bring a claim arising from the death of a patient, is still in force.

 

Case 1

“After I Saw the Full Record I Felt I Was a Whole Person”

Ms A was born with a rare form of cerebral palsy – but she didn’t learn the diagnosis until she was 43, and then only by accident.

She had applied for mobility allowance, been refused, and appealed against the decision. Before the appeal the DHSS sent her the papers relating to her case, including medical reports. It was from one of these, written by her own consultant, that she learned that her condition had a neurological cause. After following this up, she discovered in 1983, for the first time, her specific diagnosis.

Until this time she had suffered severe pain and problems with her limbs. Though she had been treated for them, and undergone surgery, she had never been told the diagnosis or understood that the problems had a neurological basis. She says the knowledge that her condition had never been revealed to her came as a shock. But knowing was a great help. For the first time she could begin to understand and learn more about what was wrong with her and actively seek advice and support. She says that had she known earlier her whole approach to her difficulties would have been different.

However, she was still not satisfied with what she knew and in 1988 asked her GP if she could look at her medical records. She was allowed to do so – and discovered to her amazement that the first entry related to 1979. All her earlier records were missing. She then contacted the family practitioner committee and was able to locate the rest of the file. For the last 9 years they had been left with the former GP, who was no longer treating her, filed under “lost records”.

She then realised that her vital information about her condition had not been available to her GP, who only had details about her recent symptoms. The missing information included reports from a consultant neurologist sent in error to a former GP.

She says:

“The discovery explained some of the terrible problems I had experienced, over a period of 12 years, in getting my disability recognised and properly treated. My new GP had been extremely helpful, but she had no record of the fact that I had a serious neurological condition, and that I had undergone major surgery related to this in 1960. She just thought I had an orthopaedic condition, because I was telling her I had been seen by an orthopaedic consultant. After I saw the full record I felt I was a whole person. I was able to ask for and get proper health care. I was able to make decisions I’d never been able to make before. All the questions I’d asked had been answered.”

 

Case 2

“The Doctor’s Secretary Kept Saying They Didn’t Have to Give Me Any Information”

Mrs B has tried to get information from her medical records to learn what make of contraceptive device she had been fitted with. But this simple request has led to great frustration.

Mrs B is infertile, and a doctor treating her suggested that the problem could have been caused by the use of the Dalkon Shield intrauterine contraceptive device (IUD) which is known known to have caused such effects. Mrs B had an IUD – but doesn’t know what make. If it was the Dalkon Shield she would probably have been entitled to compensation from its manufacturer. Although her family planning clinic confirm they were issuing the Dalkon Shield around that time, she has not been able to establish whether she received it.

Her enquiries revealed a dismaying picture of medical record-keeping:

1. The family planning clinic which fitted the device in 1974 say they have destroyed her records. This is routinely done after 8 years.

2. The Health Authority say her family doctor would have been informed at the time the IUD was fitted and the letter should be in the GP’s file.

3. But her current GP says he received no medical records on her when she joined his practice in 1982.

4. Her former GP says he hasn’t got the records either. They appear to have been lost.

Her last hope was that the details might be held by the infertility clinic she attended over the last 11 years. She thinks she may have known the name of the device at the time and told them when she began treatment. However, her efforts to get information from the clinic’s records proved a final source of frustration.

She wrote to the clinic twice, but says she received no reply to – or even acknowledgement of – her letters. Then she started to telephone:

“They treated me as a nuisance. They were quite rude at times. The doctor’s secretary kept saying they didn’t have to give me any information. The receptionist knew where the records were. It seemed everyone else could look at them except me. Finally the receptionist fetched the notes and put them on the secretary’s desk – and they must have stayed there for a few months. At one point the secretary actually had the records in front of her while she was on the phone to me, and quoted some of the dates I had attended the clinic, but she wouldn’t give me the information I needed. I said could I come up and look at them for myself. She said it was out of the question. I rang up so many times I was on first name terms with the receptionist. Had it gone on much longer I would have been too late to claim compensation. In the end I just wore them down. Eventually after six months of trying I got a three line letter from the clinic. It just said they didn’t know what device I’d been given.”

 

Case 3

“Half My Records Weren’t About Me – They Were a Shambles!”

“I’d gone to the doctor about a minor matter and he asked if I’d ever been in hospital. I said only for an operation for an abscess at the base of the spine. He looked in the notes and said ‘I was thinking of the other hospital’. I said what hospital? He said: ‘It says here you were an inpatient in a mental hospital for 6 months.’ I told him I’d never been in a mental hospital. I got the impression he didn’t believe me.

“I asked him if he had the details of my operation in the notes. There was nothing. Then he examined me, saw the operation scar, and that made him believe there might be something wrong with the records. The problem I’d been operated on for flared up again 4 or 5 years later, and that wasn’t there either. He went through parts of it that were all wrong. I said ‘I’ve never had a doctor in that area. That was never my doctor. None of that applies to me.’ It wasn’t just the odd sheet. I discovered that about half of my records weren’t about me. There was obviously a shambles.”

The GP got in touch with the medical records section. He discovered that parts of the record referred to another person of the same name with a similar birthdate. “We both appear to have been with the same doctor at one time”.

“Could I have been given the wrong treatment at any time as a result of the incorrect information contained in ‘my’ notes? Could some treatment have been withheld for the same reason?

“I have always been in the habit of agreeing to prospective employers writing to my doctor concerning my health. Did the answers they received ever unjustly prejudice them concerning me? If you’ve applied for a serious job and they see you’ve been in treatment for mental problems it could cause all kinds of problems.”

He has still not been able to see the records for himself and check that everything that shouldn’t be there has been taken out. “There could be all kinds of other information that is incorrect.”

 

Case 4

“Can You Imagine Feeling Relieved at Being Told You Had an Incurable Heart Condition? I Was!”

“In December 1983, 3 years after a massive heart attack I had an emergency two by-pass heart operation. After the operation, chest pains continued worse than before but during my next 7-8 visits and numerous tests I was assured that I was well and finally that I could resume work. But I knew I wasn’t well, and kept asking for more information.

“I was treated as someone who was pressing a point when they would rather not have it pressed. Often it’s best to wait and see how things develop. But sometimes the patient – as in my case – knows something is wrong but can’t get any satisfaction.

“Finally a new doctor advised me that I ‘should accept that my condition was incurable’ and that they could do ‘no more for me’.

“Can you imagine feeling relieved at being told that you had an incurable heart condition? I was! For over 3 months I had worked myself into a state of acute anxiety because neither the hospital nor my GP would acknowledge that I had anything wrong with me. I had reached the state where one hospital doctor tried to put me on valium. The surgeon’s secretary told me that I caused trouble for them on each visit.

“I knew the state I was in. I knew the problems I was having but I could not get anyone take them seriously. They were well-meaning. They probably felt that if they told a person he was incurable he would go downhill.”

Later a surgeon offered him another operation, which he had, but he says, “the spread of the disease was so extensive that the surgeon had to give up.” He can now walk only a few yards at a time, and is in a wheelchair.

“I have no complaint against the wonderful staff of the hospital or of the care I received but ‘honesty’ could have saved me months of anxiety, when anxiety is known to aggravate my condition.”

 

Case 5

“The Note in My File Said ‘Patient Not Informed'”

“I had problems with my periods and went for a D&C [dilation and curettage: scraping of the lining of the womb] around 1980 and recovered normally. Some years later, around 1987, I happened to see my hospital notes. They included a pathology report which said they had examined the material obtained during the D&C. It said:

‘Foetal villi. Ectopic pregnancy?’

“A note by the clinician said:

‘See pathology report. Patient not informed’

[‘Foetal villi’ indicates the remains of a foetus; ‘ectopic pregnancy’ is a pregnancy outside the womb]

“I was furious. I didn’t even know that I had been pregnant. I hadn’t felt anything. He must have made a judgement that it would have been better not to tell me. Perhaps he thought I would have been upset. I just don’t think doctors should make such judgements. I don’t even know if my GP had been informed. I can’t imagine what made him think he shouldn’t tell me. If I’d have known I would have asked for further investigations to make sure I could still get pregnant and if so if I would have any problems. I just felt I hadn’t been given the information I needed to make decisions on. No-one mentioned it.

“The thing about an ectopic pregnancy is that if you have one you tend to have more than one. It can ruin the fallopian tubes. But I had no further investigation, and I didn’t ask for it.

She subsequently became pregnant and suffered severe problems during the pregnancy. “If I’d have known about the first pregnancy I would have asked for more investigation and for my later pregnancy to be monitored more carefully.”

 

Case 6

“The Consultant Had Written That I Was Deliberately Making Myself Ill”

“Some years ago I had investigations for intermittent diarrhoea at a Teaching Hospital. My GP behaved evasively when I wanted to know what the Consultant’s letter said.” (She later succeed in getting sight of her record.)

“My checks revealed that:-

1. the Consultant had told my GP that a positive urine test for senna indicated that I was surreptitiously taking laxatives and causing my own diarrhoea.

2. the positive senna test had actually been taken, obviously in error, on the morning after I had officially been given senna in connection with another test [for which a sample of stools had been needed]. The drugs record was still there in the Notes, but evidently the Consultant hadn’t checked it before writing his letter.

“Armed with this information I confronted the Consultant. He was apologetic, but refused to withdraw the original letter from either the Hospital or the GP file. However, he did write a correcting letter – which started:

‘Unfortunately the patient saw my previous letter…’.

“Fortunately, I would have said!

“If I had not had access I would never have discovered the damning indictment in my Notes, nor the mistake which had been made. That indictment would obviously affect the thinking of any future Doctor treating me. In fact…it had already affected the judgement of another Consultant dealing with a totally different matter; not until later did I realise why he had been behaving oddly…

“I now have strong objections to having any tests done, even simple blood tests, without being shown the test report.

“On the few occasions when I have been able to afford to be seen privately, EVERYTHING has been told me, and I have been shown actual reports. Why cannot this be done on the NHS? It greatly enhances the patient’s confidence and so speeds recovery.”

 

Case 7

“You Work in a Circus!”

“Some years ago, during a consultation with an orthopaedic surgeon, I was informed that my injury was only to be expected in the sort of life that I led. Failing to comprehend his meaning (I was a statistician at the time, not an occupation normally renowned for the dislocating of shoulders) I was bemused.

“Presuming that the meaning of all this would eventually become clear, I said nothing and waited for enlightenment. It came. ‘Working in a circus as you do’, he explained.

“As it dawned upon me that there had been a mistake, he delivered the coup de grace, ‘You’re a bare-back rider in a circus’, he said, adding by way of quelling any attempt on my part to tell him otherwise, ‘your notes say so’.

“I was then shown my notes and was able to see how a personal comment made by a consultant two years before had become increasingly distorted over time.

“Fortunately, my being a ‘bare-back rider in a circus’ had had no effect on my medical treatment as my occupation was irrelevant.”

[From a letter in the Daily Telegraph, 11.12.89]

 

Case 8

“I visited my doctor, who happened to leave my medical records on his desk when he was called away from the room for a minute or so. I read the side which was uppermost. It recorded visits to a previous doctor in the area we came from for (a) asthma and (b) obesity – neither of which I have ever had. I pointed this out to him when he returned and commented that someone had evidently made entries on my card which should have gone on to the card of (a) my son and (b) my wife. As far as I can remember he tore up my record card – whether he put the entries where they belonged I very much doubt.”

 

Case 9

“My child’s notes are widely available to hospital staff. Yet I as her mother and a Hospital Sister cannot see them”

Mrs A is a part time Hospital Sister. Her daughter, now 6, was born with very serious illnesses and was treated on many occasions at the hospital where Mrs A worked. She has asked to see her daughter’s hospital notes, but has not been allowed access. In 1987, at a time when she was not then working, she wrote:

“I find myself in the ludicrous situation, as an ex-Hospital Sister, having read many hundreds of patients notes in order to enable me to give them thorough care and understanding, whereas I have no access to my own child’s. Her Hospital and General Practice notes are read by all and sundry from receptionists, student nurses, ward clerks, up to the senior medical staff, and yet I as her mother and a Hospital Sister have no access to them”.

Since that time she has rejoined the hospital staff, but has still not been able to see her daughter’s record. She has been told that if it became known that she had been allowed access, others would ask for it, and the hospital would have to divert resources from other areas to provide a reading room and staff to supervise access.

However, with the agreement of her daughter’s current consultant and her GP she has been permitted to read letters from the hospital which are held on her GP’s records. She discovered these contained inaccurate and damaging comments about her home life written by a former consultant, including: “I wonder to what extent the parents even talk to her (the child) directly” and the suggestion that their daughter was “ignored and left for long periods of time in her pram or playpen”.

Mrs A says the consultant had never even visited their home, could not have observed what he described. She says his comments are “Total, total, fiction. I’d be horrified if someone read this. Its the total opposite of what I did for her as a mother during those critical times.”

Both her current consultant and GP agree that the comments are unsupportable, and with their agreement the copy of the letter has been removed from the hospital records. However, another copy remains in the files of the health authority’s community health department.

She says the former consultant had a very odd view of her daughter’s condition and prognosis, and refused to accept her account of how well she was doing. For example, he had said she would reach school age with many physical and mental handicaps, whereas Mrs A says her daughter – who now is in school – is described by teachers as one of the brightest children in the class. Her present consultant describes her as a “success story”. She says her GP used to laugh when he read the consultant’s letters “he’d say, we’ve got another of these letters. He wouldn’t show them to us but he used to hint that they had got things noticeably wrong”.

Mrs A remains concerned that the objectionable letter will have been seen by colleagues she works with at the hospital and mixes with socially, and that other similar comments may still be on the record.

“An enormous number of people in a hospital may see the records. I know a great many of the staff and they know me. Any of them reading this would say ‘Good heavens! What was going on?’ I know some of the staff I work with have read this, which causes me embarrassment. Its put me in an invidious position. The last thing you want in these days of child abuse is to be told you left your child in the playpen and pram and did not talk to her. But that was said with him never having seen the home situation. My GP knew what was going on. He told me: ‘If I really thought any of those things were true I would have told you absolutely straight’. But I still haven’t seen the actual hospital notes. What’s in these, I dread to think.”

 

Case 10

“I am a Doctor who is also a Very Ill Patient”

“I am on both sides of the fence. As well as being a medical doctor, I am also a very ill patient. I am certain that my medical records both GP and hospital have hung over me like a sword of Damocles throughout most of my illness. When I see a doctor for the first time I am usually treated reasonably until my notes are available when the attitude changes completely and I am treated completely dismissively.

“The reasons my notes do me so much harm are as follows:

1. Chronically ill patients who won’t get better are none too popular among my well colleagues.

2. Having had to wait for 8 years or so for confirmation of one of my two diagnoses meant that all sorts of damaging remarks got into my notes.

3. Once having got my diagnosis, it wasn’t a condition which is currently popular with doctors so the insults and accusations continue.

4. Once an inappropriate adverse comment is made it is always picked up by future doctors and amplified so that the process of losing credibility takes place spontaneously without any help from me.

5. If certain doctors are made aware of any personal problems (and don’t we all have those?) it can be almost impossible for them to take organic problems seriously.

6. Contrary to the opinions of many people, doctors themselves are frequently treated very badly by their colleagues. Sometimes, in order that the most damaging opinions don’t get into print the phone is used instead with lightning results.

“You will tell from my tone that I am very unhappy indeed as a doctor (of 18 years standing) and more particularly as a patient about the way in which one’s notes can be far more of a hindrance than help.

“Incidentally, I dare not request to look at my notes because that would be construed as ‘trouble-making’ and I’m in enough hot water as it is.”

 

Case 11

“Why Was It Necessary to Assess My Character?”

“After the retinue had swept out, I saw my medical file still lying at the foot of the bed. For a couple of minutes I didn’t dare to touch it…

“From childhood I have suffered from a chest disease, so my file is a thick one. My gaze first fell on a letter from a GP to a hospital chest consultant. It was dated 18 years ago. The GP gave a pen-portrait of me which said: ‘This is a nervous introverted anxious little soul.’

“As I had only recently moved to the town, he really knew nothing about me. I was, unbeknown to the GP, going through one of the most harrowing periods of my life: mother dying and a marital breakdown which ended in a high court action to regain my daughter. Normally, I am neither anxious nor particularly introverted, but here, for all time, my character had been assessed. Why had it needed to be assessed?”

[From an article by Daphne Glazer, The Guardian, 15.12.89]

 

Case 12

“Dealing With a Locum is Delightful – You Can Be Pretty Sure He Hasn’t Ploughed Through Your Records!”

“I attempted to register with a GP following a move in 1982. Having had an excellent and long-standing relationship my previous GP I was dismayed to encounter a noticeable coolness of response when I approached the various doctors in my new town. I was, incidentally, in dreadful pain at the time from a failed operation, but there was no sympathy on offer. One of the GPs finally provided the explanation: although the surgeon I was trying to bring a case against was not even in the region, the surgeon who had operated on my knee where I had previously lived had found about my intentions and written to the GPs in my new town advising them to have nothing to do with me.

“After 6 months without a GP, the Family Practitioner commitee forced a GP to take me on…While the FPC were holding my medical notes I asked whether this defamatory letter was amongst them. He assured me it was not, and that there was nothing detrimental of any kind. As he had been extremely kind and courteous throughout my GP problem I didn’t know whether he was just being reassuring, or whether to believe him. I’ve moved again since but am still dogged by the suspicion that the letter may be in my notes – with this kind of doubt, how can you be easy in your approach to a GP?

“Dealing with an occasional locum, on the other hand, is delightful, as you can be pretty confident he hasn’t ploughed through all your notes!”

 

Case 13

“When I Read my Notes I Finally Realised Why the Doctors Hadn’t Believed Me!”

Ms B has been diagnosed as suffering from ME – myalgic encephalomyelitis, or post-viral fatigue syndrome. It began after she had been ill with glandular fever, one of the conditions linked to it. After the symptoms had continued for 18 months her GP referred her for psychiatric assessment:

“The psychiatrist asked me a lot of questions about my youth and my parents. He listened attentively and seemed very sympathetic, until I mentioned how my problems started after I’d contracted glandular fever, at which point to my astonishment, he stated that I had never suffered from that illness. I replied that I’d spent a week at the health centre during my first week at university, and that the GP had based his diagnosis on the results of a blood test. 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!”

Her illness continued for a number of years during which time she saw a number of psychologists and psychiatrists. She later applied to see her medical file, and after some time was able to see it:

“According to the psychiatrists, I was a hysterical personality. These symptoms were my way of attracting attention. With a diagnosis like that, I wasn’t surprised that they’d been so unfriendly and distant. There was just a tiny note in the corner of one page saying I’d had a recurrence of glandular fever, which they obviously hadn’t read. There was no proper reference to it or to my stay at the health centre. I finally realised why the doctors hadn’t believed me all those years ago.

“I wrote a letter to the GP who had diagnosed glandular fever, asking him how he had arrived at that diagnosis. In his letter he confirmed the diagnosis, adding that the blood tests had demonstrated the presence of antibodies to the Epstein-Barr virus (which causes glandular fever). I felt exonerated!

“But because they hadn’t accepted that I had glandular fever they treated me as a psychiatric patient. I was studying psychology at the time, so I was very open to a psychological explanation. More importantly, I thought the doctors knew what they were talking about. I could have got better much more quickly if I’d just gone home and rested. Since I’ve had the diagnosis of ME I’ve been doing the right things – and I’ve got much better.”

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