Rationale

Why We Do It

Here is a sample of anonymised experiences that some people have had while receiving medical care. The reason for the Tuke Institute is evident in the description and commentary on the medical practice experienced:

Mr. Wood's experience
Experience:

Mr. Wood went to his general physician with symptoms of pain
in the hands and feet, rash, intense headaches and pain in the hips, severe fatigue, and sleep disturbance. These symptoms made it very difficult for him to walk, write, or stand for any length of time and he was having trouble doing his job. As Mr. Wood has an existing chronic infection, the general physician referred him to a specialist physician and prescribed some symptomatic treatment for pain, which did not help.

On reviewing Mr. Wood’s medications, the specialist physician ruled out peripheral neuropathy as none of the medications Mr. Wood was taking was associated with peripheral neuropathy. Mr. Wood was sent home without diagnosis or treatment and without a monitoring plan to suggest when to come back if things got worse. The symptoms did get worse and Mr. Wood became unable to work; he was now having to walk in a stooped fashion, very slowly and with a stick. Having been signed off work by his general physician, he went to see a locum specialist physician; this physician refused to listen to what Mr. Wood had to contribute about a possible diagnosis and management of peripheral neuropathy, despite the fact that Mr. Wood had significant knowledge in the field from his own work. Mr. Wood became tearful at the way he was being treated and the attitude of the physician; he was sent home without treatment, follow-up, explanations, or symptom relief. He went back again three months later when things had worsened further. Because of his tearfulness, the physician diagnosed his problems as ‘depression’ and no treatment was offered.

Mr. Wood took this issue in his own hands and arranged for an independent evaluation by a clinical psychologist in the same clinic, who was surprised at how badly he was. The psychologist quickly ruled out depression and called the physician in, insisting that the physician take the symptoms seriously. The psychologist insisted on symptomatic pain relief.

The physician arranged for Mr. Wood to be taken into hospital for tests; there Mr. Wood overheard the ward physician speaking to someone on a phone and calling Mr. Wood ‘a waste of time’ and ‘a trouble-maker’. Mr. Wood was in hospital for 48 hours, although the tests were only done in the last two hours of his stay. The tests done were X-rays and a physical exam. During that time, Mr. Wood was treated with obvious disdain by the consultant rheumatologist and neurologist: this was experienced as a frosty attitude, a cursory and disdainful approach to doing clinical exams on Mr. Wood, an unwillingness to talk to him, and treating him ‘like a tiresome child’.

The rheumatologist diagnosed bursitis and the neurologist ruled out peripheral neuropathy. Mr. Wood was discharged without treatment. The following week, Mr. Wood saw the neurologist as an outpatient; none of the X-ray results had been received. The neurologist didn’t remember that he had seen Mr. Wood as an inpatient the previous week. Now, the neurologist promptly diagnosed peripheral neuropathy and readily prescribed Mr. Wood’s some medication for this. The neurologist was involved in a research study on this medication.

With further prompting from Mr. Wood, electrical tests were done two months later to check the function of the nerves and the results were normal. Meanwhile, a blood test for a treponemal infection was done, but the results were lost. No re-test was ordered by the physician and Mr. Wood was not informed that the results had been lost; he presumed that he would have been informed of anything other than a negative result, so he did not take the physician’s responsibility for this.

Mr. Wood’s eyesight started to deteriorate which was ascribed by the specialist physician to the medication he was taking for the nerve pain; Mr. Wood developed a tongue ulcer and this was biopsied a few months later, whereupon a treponemal infection was diagnosed. By that time, the sight in the left eye had deteriorated severely. Antibiotic treatment for the infection was started.

From the start of the symptoms to receiving treatment, 13 months had passed. Because of his experience at this clinic, Mr. Wood transferred to another one. There was a three-month delay in his previous physician providing him with a medical summary – which omitted the issue of the failure to diagnose and stated that all Mr. Wood’s symptoms had been resolved by treatment. However, Mr. Woods has been left with permanent sight-loss and permanent nerve damage; he has only been able to resume work part-time and he is now permanently disabled.

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Comment.

There are several typical problems in this experience: a diagnosis was ruled out because the textbook did not associate it with the medications that Mr. Wood was already taking, despite the fact that the condition Mr. Wood already had is associated quite regularly with unusual presentations of illness. Because of the lack of ability to identify the disease, the illness itself was ignored and Mr. Wood was not listened to when he had something to contribute about it. He became frustrated and upset, at which point this was linked by the physician with his inability to tick a diagnostic box and it was then diagnosed as depression, even though the physician was not qualified to differentially diagnose depression. ‘Psychological’ is often the garbage dump for illnesses that don’t fit into neat tick-boxes. Once this diagnosis had been challenged by Mr. Wood’s initiative, the physicians in the hospital – having been told of the conflict between the psychologist and the specialist physician – bullied Mr. Wood for having gone to a psychologist to challenge their colleague’s diagnosis of depression. Mr. Wood’s initiative and motivation to get well was wasted through the physicians’ need for dominance and he was treated like a whistle-blower. The specialist physician arranged for some tests to be done while Mr. Wood was in hospital but without adequate preparation: two days of hospital bed-costs were wasted, the appropriate tests were not done, the tests (X-rays) that were done could have been done as outpatient very easily. Further, the symptoms were indicative of a treponemal infection that Mr. Wood was at high risk of and which the specialist physician should have an increased awareness of. This put the rest of the public at increased risk for this infection due to inadequate efforts at diagnosis.

Mr. Wood is a competent advocate for himself and his health, having learned through years of living with his condition; however, there was a limit to his effectiveness because of the attitudes of the medical staff towards him. The average person would not have been able to be as assertive and would not have thought to challenge the physician’s amateur diagnosis of depression. Further, the average psychologist would not have been willing to confront physician colleagues quite so effectively and advocate for Mr. Wood receiving competent treatment.

The outcome would have been very different if there had been a thorough evaluation at the beginning, with some effort to get the appropriate tests done promptly, a clinical psychologist had been brought in as part of a team to differentially diagnose the contribution of psychological factors to the expression of symptoms and rule out depression, if Mr. Wood had been treated with respect and compassion and what he had to say had been valued, Mr. Wood would not have suffered any permanent loss of sight, would not have lost his job, and might not have had to live long-term with pain. Further, the trust between the physicians and Mr. Wood would not have been breached.

The problems were: physician need for dominance and authority, a lack of basic respect for Mr. Wood, a lack of ability to see beyond basic diagnostic protocols, a lack of adequate care in differential diagnosis, a refusal to work in a team with non-physicians, and an inability to see the illness because they couldn’t see the disease, a refusal to treat Mr. Wood’s illness (the symptoms) without having a diagnosed disease, and a failure of prevention – both for Mr. Wood and the general public. 

Mrs. Parry's experience
Experience:

Mrs. Parry has had cancer for several years. Initially, she was told that there was nothing to be done about it and that there was no hope; she should go home and prepare to die. She asked for a second opinion and was grudgingly given the name of a second physician, who said that something could be tried even though it was going to be hard row to hoe. Mrs. Parry was very willing to try, due to which she is still alive today. During this process, she has suffered a series of mishaps.

The most recent mishap was during the removal of a lung. Following this procedure, she was diagnosed with a bacterial infection of unknown location in the body. It was eventually thought to be in the space where the lung had been removed, so the surgeon made an opening in the side of her chest in order to have direct access to the site and to provide drainage. After several months, Mrs. Parry was told that the surgeon would not close the opening in her chest cavity for financial reasons; the hospital would not authorise the expense. She was told that ‘lots of people live with these holes for years’, although when she asked for examples she was refused; a thorough search on international online forums for people with cancer came up with no-one who had lived with such an opening for such a long time. Meanwhile, the opening became more infected and she was forced to stuff the hole with tampons to stop the pus from draining quite so freely. The hole was now large enough for someone to put their fist into her chest cavity.

During a subsequent meeting with a surgeon, Mrs. Parry was told that the hole was so large it could not be closed. She was meanwhile put on stronger antibiotics and steroids, the latter at a dose that risked permanent damage to her sight and her hearing. She developed hallucinations and an inability to sleep. Upon complaining about this, the neurologist said that it was because she had a psychological problem. Her ‘psychological’ illness resolved upon cessation of the steroids.

Of her own volition, Mrs. Parry researched the hospitals available to her nationally and chose one that had a reputation for being particularly capable in treating persistent infections. At a consultation there, she was told that the hole could be closed although it was not an easy process. During the first surgery, the surgeon expanded the hole and scraped the inside tissue as clean as possible, while putting her on some other antibiotics. She was put on intravenous fluids and told also to drink freely, which she did following the surgery. In the middle of the night, she started to drown in her own lung fluid. Due to the morphine received during surgery, she was unable to urinate and had to beg for a urinary catheter which she was initially denied and told to urinate normally; she was catheterised very belatedly and first in the vagina rather than the bladder. Eventually, the build-up of lung fluid was managed on an emergency basis.

Four days later the surgeon came round, after insistent requests by Mrs. Parry to see him, and she was asked how she was faring and how the wound-cleaning was going. She informed him and it turned out that the wound-cleaning was being done only once a day instead of twice and without sterile technique, despite the obvious risks to Mrs. Parry. The orders had not been written up correctly and they had not been read correctly. She was then given two different types of antibiotics to prevent or treat possible infection. Five weeks later a second operation was done to close the hole, during which a large dose of the same antibiotics were given. In toto, these antibiotics caused damage to the nerve responsible for balance as they were contraindicated for someone who had received the chemotherapy she had previously. This nerve damage caused Mrs. Parry to suffer severe vertigo and to vomit whenever she turned her head. She was unable even to crawl without falling over. The physicians were unable to predict whether the nerve would ever recover.

She was discharged as the operation was considered a success, although her husband had to come home from work twice a day to continue to clean the wound. He was very angry that he had to care for someone who was now sicker than when he had first taken her to hospital two months previously. He was not provided any support or treatment himself to be able to care for herself or himself during this process.

Mrs. Parry paid privately for a therapist to come in to provide rehabilitative medicine and slowly she has regained her ability to balance. She now walks carefully, making sure never to turn her head fast or she will fall over. She continues to rehabilitate through her own efforts.

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Comment:

The initial recommendation for Mrs. Parry to go home and prepare to die was due to a typical lack of knowledge by physicians who are not trained as scientists regarding the applicability of population-based statistics to the individual case. Further, when Mrs. Parry asked for a second opinion, she was treated unprofessionally.

It is considered necessary to close this type of opening in the chest wall after 6 months at the most. It is unethical for any clinician to abide by the decision of a hospital – due to financial considerations – to refuse to finish a procedure already started.

Mrs. Parry suffered a typical problem: when symptoms are not readily explainable, physicians will readily diagnose the problem as psychological, even though they are not qualified to do so. They will not call in consultation from a psychologist for differential diagnosis, which is also a typical refusal to work within a team unless it is comprised solely of physicians. Mrs. Parry is well aware of the trials of medical practice, coming from a family with several physicians in it, but she said of the neurologists: “first they try to make you feel stupid and then, if you disagree with them, they try to make you feel crazy”.

Mrs. Parry should have been seen promptly by the surgeon during the second set of surgeries and without her needing to insist on it. She should have been informed personally of the correct procedure for cleaning the wound, so that she could monitor the quality of her care. The antibiotics given should not have been prescribed as they interacted with the effects of chemotherapy that she had received several years previously; a competent medical history should have discovered this risk.

It is a particular problem that once the physicians have completed what they are able to do, the medical treatment is considered to be finished; Mrs. Parry is still unable to work or even care completely for herself. She has to pay for private care to rehabilitate, including psychological and rehabilitative medicine which is not done in continuity with her physician-centred care.

When Mrs. Parry complained about the way she was treated in the hospital, she was told that it was due to ‘team decisions’, although the team never showed up at any one time, the responsibility was always passed on to another member of the team, and responsible parties tended to disappear. This diffusion of responsibility is also a typical problem in creating accountability.

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Addendum:

Mrs. Parry died in 2010 as a result of her illness. 

Mr. Leach's experience
Experience:

Mr. Leach was on medication for a chronic infection which required him to fast for a total of nine hours a day. His home was undergoing renovation, including his kitchen, and he was often had to choose to take his pills and not eat. As he was losing weight, he went to his specialist physician to ask for a change in medication to something that was easier to take. He was given a new prescription. Shortly, he found that the medications were no longer controlling the infection – he had been prescribed medications that he should not use, as he had used some related ones previously and the infection had become resistant. As his is a potentially life-threatening infection, Mr. Leach complained to his physician but was told that he was “expecting too much from the NHS”.

Mr. Leach changed clinics. At his new clinic, he was prescribed a new set of medications, including one with toxic effects on the brain that were known by the prescribing physician. Mr. Leach had previously had a serious brain injury but had recovered his function well through rehabilitative medicine.

Over the next few months, Mr. Leach was unable to sleep for more than a hours a night; he was increasingly irritable and life became extremely stressed. Then he lost over 10% of his body weight within a few weeks, became unable to think clearly and lost control of his behaviour, such as taking a hammer to a car outside his home when its alarm would not stop. He went to his specialist physician and begged for help, weeping. He asked to see a neuropsychiatrist, as this was a specialist he knew that had the right knowledge for differential diagnosis. He was told that he could see a neurologist in five months or a psychiatrist in a few weeks. He was referred to the psychiatrist for ‘tremulousness’; Mr. Leach saw the psychiatrist subsequently, who was very sympathetic and said Mr. Leach could come back any time for more counselling. He was offered no symptomatic treatment and no efforts were made to diagnose the problem, as it was considered psychological; however, no reasons were given for its development and no psychiatric diagnosis was made.

Shortly afterwards, Mr. Leach lost control of his legs and became unable to walk other than by holding on to the walls and dragging his legs. He started hallucinating, becoming alternately terrified and enraged, largely unable to leave the house. He shook constantly and would writhe at night, sometimes being unable to breathe as his diaphragm muscle would not work. He had to sleep kneeling to stop his legs jerking so badly. He also started grunting and jerking as if he had Tourette’s syndrome. He took himself back to the specialist clinic and – after weeping and saying he was afraid he might kill himself if something were not done – one of his medications was changed for another very similar one and he was sent back home. Slowly, his mental state returned to normal, but he was still unable to control his muscles.

With urgent letters from his general physician and help from family members, he was admitted to three hospitals over the course of several months. No physician could find anything wrong on the standard tests; the clinical exam showed some clear signs of disorder but they did not form a diagnostic pattern. He was refused to be seen by the neurologist at the first hospital because he had complained about his care; Mr. Leach was dumped off the list and calls were not returned. The second hospital took him inpatient for a week for observation, without performing any tests and without informing Mr. Leach of their intentions; at the third hospital, the neurological physician diagnosed him as having a psychological disorder without referring him to a psychologist for differential diagnosis. When Mr. Leach suggested possibilities underlying the problem and for symptomatic treatment, he was disregarded and treated ‘haughtily’ and ‘like a trouble-maker’ for making suggestions. He was discharged without referral, unable to work and severely ill.

After two and half years of continually trying to get a diagnosis and treatment without success, Mr. Leach resolved to go to America for treatment with the help of a private psychotherapist. Within ten days of his arrival there, the illness was diagnosed as due to one of his medications interacting with his existing brain injury; he stopped that medication under guidance and within another ten days, the illness disappeared.

Mr. Leach was faced with the challenge of becoming well again, regaining his psychological health in the face of the way he had been treated, regaining his weight, rebuilding the muscle that he had lost when his legs had atrophied, and trying to get back to work and fitness. His rehabilitation – paid for privately – took over two years and Mr. Leach is still unable to pursue sport; he works part-time only. Mr. Leach lodged a complaint with the first hospital, which stated that there had been no inadequacy in their services. The complaint was pursued with the HealthCare Commission, which lost the file; after a petition to the government ombudsman, which was supported, there was no response from the Healthcare Commission until shortly before the time limit available to Mr. Leach to sue; the response was that the investigation was continuing. Since then – over three years from the time of initial malpractice – no final response has been received from the Healthcare Commission. Mr. Leach has declined to sue, stating that he needed his energy to get well and get on with his life.

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Comment:

Mr. Leach was a highly motivated and responsible person with exceptional adherence to medication. Prior to this illness, he was an active sportsman who had competed internationally. He was first prescribed medication that was standard but should not have been prescribed for him given his medication history – it would not have been prescribed had the physician in question read his medical notes properly or asked Mr. Leach the right questions. This shows a problem with tick-box prescribing through standardised protocols that are potentially dangerous when treatment is not personalised. This failure to prescribe correctly seriously reduced Mr. Leach’s future treatment options for a chronic infection that could be life-threatening, as the infection became resistant to a whole class of related medications. Mr. Leach trusted his medical service providers to be as responsible as him in protecting his medical interests, but this trust was breached, responsibility denied, and he was blamed for having too high expectations, so he changed medical services.

Mr. Leach’s second specialist was in fact a physician gynaecologist and it is questionable that Mr. Leach should have been cared for by this sort of clinician at all. The second set of medications should not have been prescribed as it included one with known toxicity for the brain and Mr. Leach had a history of serious brain injury. Once neuropsychiatric symptoms were seen, the connection between this medication and Mr. Leach’s existing brain injury should have been made promptly. The referral to the psychiatrist was inaccurate and one-worded. In offering a referral to a neurologist, rather than a neuropsychiatrist, the gynaecologist was not responsive to what was, in effect, a medical emergency given Mr. Leach’s behaviour and his stated concern about dying by his own action. There was a clear danger both to Mr. Leach and to the public’s wellbeing.

The failure to diagnose was due to: a failure to take a proper medical and symptom histories, a lack of direct consultation by the treating physician with a clinical psychologist or neuropsychiatrist in order to create a correct referral, a lack of required knowledge by neurologists about the neurological basis of behaviour, a failure to include a neuropsychiatrist and a neuropsychologist as part of the subsequent team, bullying Mr. Leach for complaining about the quality of care (by blaming him for inappropriate expectations, by refusing to see him, and by unprofessional behaviour towards him when he sought to be involved in his treatment), an amateur diagnosis of psychological disorder by physicians in the face of their inability to diagnose the biological basis of the illness – often used as a means to avoid acknowledging failure to diagnose, to deny the validity of an illness in the presence of atypical presentation or an unusual configuration of clinical signs, and to bully the person in treatment –, failure to provide case-management, failure to create a treatment or a management plan, to provide symptomatic treatment even when specifically suggested by Mr. Leach, failure to respect, inform or listen to Mr. Leach and his efforts to understand what was going on. It shows a system of physician-centred medicine with pervasive dysfunction and disregard for the welfare of a member of the public. No treatment was offered to Mr. Leach to help him rehabilitate, which significantly increased the likelihood of his needing medical services again in the future, thus promoting dependency and increasing costs even further through ineffective practice. The way in which Mr. Leach was treated and the results of his experience caused serious psychological injury.

There is clear dysfunction of the accountability system in an obvious case of pervasive malpractice. 

Mr. Davidson's experience
Experience:

Mr. Davidson was experiencing significant pain in his right scrotum, which was diagnosed as epididymo-orchitis, an inflammation of the testicle due to infection. His general physician gave him the standard course of antibiotics, which reduced but did not alleviate the pain completely, and one of the testicles retracted into the body. A second standard course of antibiotics still failed to resolve the pain and Mr. Davidson was referred to a specialist physician.

During the appointment, the specialist physician was noticeably uninterested in Mr. Davidson’s experience of pain and was ‘dismissive’; his examination was cursory and Mr. Davidson felt as though he was being considered a ‘time-waster’; the consultation took less than five minutes. The physician noted that the results of an ultrasound test showed no sign of active infection and claimed that there was nothing further that could be done; he referred Mr. Davidson to the generic pain management clinic. Mr. Davidson left feeling angry and dismissed.

Shortly after, Mr. Davidson was diagnosed and treated for cryptococcal meningitis – a risk for someone like Mr. Davidson, who has severe immunodeficiency. Mr. Davidson was treated with the appropriate antifungal medications and the brain infection was managed. Meanwhile, Mr. Davidson started producing blood in his sperm. A test result showed that there was also some infection there. An extended course of antibiotics resolved most testicular symptoms – although testicular retraction remains – after seven months of pain. He had been assured previously that there were no lasting effects from epididymo-orchitis.

Mr. Davidson wrote a letter of complaint to the hospital, which responded 6 weeks later. The chief executive informed him that there were in fact lasting effects from epididymo-orchitis, that the infection that was treated with the extended course was a different infection and was of the prostate (which Mr. Davidson had not been informed about before) and argued that he was susceptible to recurrent but not chronic or occult infections. Mr. Davidson responded 5 weeks later with his disagreement and the hospital answered finally three months after that. An impasse was reached.

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Comment:

Mr. Davidson was suffering from advanced immunodeficiency and was at increased risk for infections. The specialist physician did not take this into account in assessing the likelihood of hidden and persistent infection and was apparently all-too-ready to refer Mr. Davidson to another clinic to get on with ‘more important cases’. However, in his defence and despite a lack of any evidence, the specialist physician used the fact of immunodeficiency as a reason to insist that it was a new infection rather than a persistent infection that had spread locally and that could have been prevented. Perhaps luckily for the hospital in this instance, the testicular infection was not the cause of the brain infection, although fungal infections of the testicles can be related to infection of the brain – sometimes fatal – when in a person with advanced damage to the immune system.

The problems were due to: text-book practice; a poor attitude by the physician causing damage to the clinical relationship; a failure to see the illness for the lack of apparent disease; a failure to be thorough and conservative in diagnosing disease, despite the fact that infectious disease in immunodeficiency is often hidden and can fail to resolve with standard treatment; a failure to practice conservatively and preventively in a high-risk condition; a failure to respect Mr. Davidson’s experience of pain and address this empirically; a failure to use Mr. Davidson’s motivation to resolve the symptoms for the purpose of better overall health. There was also an absolute reliance on objective tests, regardless of the fact that they have not been scientifically validated in all conditions: the predictive value of ultrasound in diagnosing soft-tissue infection in immunodeficiency has not been established definitively and is unlikely to be 100%. Nevertheless, the physician relied on this over and above the medical history and what Mr. Davidson himself had to report.

The response to the complaint was inadequate and relied largely on a matter of interpretation of practice and results, and the hospital’s chief executive relied exclusively on the physician’s interpretation despite the fact that Mr. Davidson’s interpretation was equally reasonable. It failed to address the issue of how to make sure that standards and practice could be improved or to make Mr. Davidson felt heard. There was no acknowledgement of anything having been done other than perfectly by the clinic staff and no acknowledgement of the use of the information on how to promote public safety in future practice. Both the treatment and the response to the complaint damaged Mr. Davidson’s trust in the medical service. 

Mr. Brown's experience
Mr. Brown was diagnosed with a chronic infection and was referred to a specialist for his condition to be monitored. Due to the nature of his infection, Mr. Brown needed a number of initial monitoring tests and visits to the specialist department of his local hospital dealing with his condition. Mr. Brown’s condition is incurable, life-limiting and requires life-long monitoring and treatment.

On his first 5 visits to the department, Mr. Brown was seen by five different clinicians and did not meet the senior (‘consultant’) physician responsible for his treatment until the fourth visit. On this occasion, Mr. Brown was asked by the senior physician who the physician responsible was—he had assumed he was covering another physician’s workload. Mr. Brown had to inform this physician that it was him. At this appointment Mr. Brown was informed that he would need to begin life-long treatment for his condition at the following appointment. At the next appointment, Mr. Brown was informed by a junior physician that the senior physician had not told him about the initiation of treatment and that Mr. Brown would not, in fact, be starting treatment–despite the fact that the senior physician’s decision had been recorded in Mr. Brown’s medical notes, which the junior physician had not read. Mr. Brown then had to insist on treatment being prescribed, even though he was confused as to whether this was the correct course of action. No senior physician was available to provide clarification.

Mr. Brown had presented on his second visit with a skin condition which was causing him significant discomfort, lack of sleep and distress. A number of appointments later (some with more than a four hour duration due to problems at the department) and Mr Brown’s skin condition had significantly worsened. Following a cursory examination and without the biopsy necessary to diagnose the condition, Mr. Brown was told that he had eosinophilic folliculitis as a consequence of an immune response to his chronic infection. Being unable to continue with this situation, Mr. Brown demanded a proper assessment at the following appointment. He was subsequently diagnosed with discoid eczema, the cause of which is believed to be physical and mental stress. Mr. Brown was prescribed with topical steroids and the condition cleared.

During the course of a visit to the department, Mr Brown was prescribed a particular treatment by a nurse. During the discussion, Mr. Brown asked what the prescription was and requested the patient information leaflet which accompanies the drug. Mr. Brown was informed that he must agree to treatment without this information or the treatment could not be provided; he refused treatment. A heated discussion ensued, during which Mr. Brown requested to see a physician so the situation could be explained and so that his concerns regarding the safety of the proposed treatment could be addressed; this request was refused. Mr. Brown was extremely frustrated and had to telephone the hospital’s complaints department from his mobile phone in the treatment room. Mr. Brown’s sanity was then questioned by the nurse.

In order to understand his condition and treatment, Mr. Brown requested to view a copy of his medical records. This request was refused. After applying again, the request was dealt with incorrectly and patient confidentiality procedures were breached. Some months later, Mr. Brown requested a copy of some other records from the hospital, after being given two different diagnoses for a gastrointestinal disorder. This request was also mishandled. Once the requested information was received, Mr. Brown discovered that during the course of his referral for this problem, his confidentiality as a patient had been breached despite a previous, written request to the contrary. Mr. Brown complained and his sanity was again questioned at this stage by the hospital’s complaints manager.

Mr. Brown then raised a formal complaint with the hospital, covering a number of issues including, but not limited to the above, so that he could understand what had gone wrong systemically with his treatment and so that he could restore his trust in his service-providers and prevent the same things happening to others in the future. Some six months later, Mr. Brown has yet to receive a response from the Hospital trust. Mr. Brown has requested a formal psychological evaluation in order to quell his distress at repeatedly being told by unqualified hospital staff that he has a mental illness simply because he has chosen to complain.

Mr. Brown now communicates with his hospital Trust via solicitors, having failed to obtain treatment elsewhere.

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Comment:

It is not unusual for patients who insist on being fully informed and on participating in their treatment to be labelled as having a mental illness; this is the nature of coercive bureaucracies the world over. In this instance, it is a question of focusing on the patient’s needs, ensuring good clinicianship, and engaging with the patient as an equal and a partner in treatment. Having failed to do that, it seems that there were a number of opportunities that the service-providers failed to use to de-escalate the situation, to acknowledge error and apologise; instead, their responses simply caused escalation. Again, this is not unusual in coercive bureaucracies. In the UK, the only options are litigation for financial remuneration at the tax-payers’ cost, but where no changes will be required. Truly, the NHS is unaccountable.

These initial case examples will be added to and detailed further over time. We are interested in hearing of experiences relating to unprofessional practice by all medical professionals, including nurses, psychologists, physicians, and social workers. If you would like to share your experience, please contact the Tuke Institute.