General Medical Council

Patient information leaflets: “a stupid system”.

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The NHS’s multifarious patient information leaflets are inaccurate, inconsistent, and confusing, finds Margaret McCartney, and effort is duplicated because each trust commissions its own, often from the private sector

The so called patient revolution is nothing without quality information. And so the NHS is awash with patient information, especially leaflets, in hospital wards, outpatient clinics, and general practitioners’ surgeries. Some trusts commission leaflets from external, profit making companies; others write their own. But how efficiently does the health service coordinate them, and are leaflets tested for effectiveness on patients?

In a recent study researchers asked 128 trusts for leaflets given to patients after an inguinal hernia repair, and 93 trusts responded.1 Almost one in five trusts sent a leaflet created by a private company, Eido Healthcare. Others had inconsistent guidance on when to return to office work (ranging 1-6 weeks) or manual work (2-12 weeks). Similarly, leaflets gave conflicting advice about when to resume driving, sex, and sport. This means that patients are being given very different information about the effects of the same surgery, depending on where they live and which leaflets are used.

A similar study examined leaflets provided to patients who had been offered extracorporeal shockwave lithotripsy. The researchers found that the leaflets did not consistently mention common recognised complications and some were not mentioned at all.2 Another study, which examined patient information leaflets given for transrectal ultrasound guided prostate biopsy, again found wide variation, with drugs, analgesia, and complications often inadequately explained.3

“It’s a stupid system, a waste of money, and, without rigorous standards of searching and appraisal, much of the information is biased and misleading—especially in terms of fair representations of risk,” Muir Gray told the BMJ, reflecting on the current situation in the NHS. Gray is co-chair of the executive council of the Information Standard, an independent certification scheme funded by the Department of Health for organisations producing evidence based healthcare information for the public.

Gray said that a lack of coordination and slow uptake of the certification scheme by the NHS has meant that much information provided to patients is of poor quality. “Patients have a right to clean, unbiased information, but they can’t get that off the internet,” he said. “It’s not possible to communicate to a patient in 10 or 20 minutes everything about a decision. Knowledge is essential, but you can’t rely on the consultation—you don’t have the time. Therefore we need to supplement and complement face to face. You need that to help people reflect on their values, to discuss their fears and anxieties.”

The Information Standard, which is run by the for profit company Capita, offers a kitemark if the information presented is evidence based, clear, and accurate. Patients should also be involved and have tested the information.

Some 400 UK hospitals use Eido, a private company, to produce information leaflets for them. Eido’s website says that the company produces “informed consent patient information leaflets,” which it says “improve the doctor-patient relationship, reduce the risk of litigation and increase patient satisfaction.” They advertise both their Information Standard accreditation and ability to customise information locally.

Simon Parsons, a consultant surgeon in Nottingham, set up the company when he was a surgical registrar out of concern that the informed consent process, which was subject to then new General Medical Council guidance, was using poor quality patient information leaflets. Eido’s information leaflets are indemnified, and Parsons said, “In the 10 years we have supplied in the UK, not a single claim has been brought against us in terms of inaccurate patient information.” The company supplied audit data in support of its claim of patient satisfaction. The leaflets are not publicly available except through a hospital or surgeon who has access to them. East Cheshire NHS Trust makes one payment a year to Eido, which was for £6511 in 2012, the trust said in response to a request under the Freedom of Information Act.

Meanwhile, Guy’s and St Thomas’ NHS Foundation Trust has an online, freely available library of about 850 patient information leaflets, regularly updated, but all are produced in house.4 These are written by clinicians and healthcare professionals, and tested by patients or lay readers to ensure they can be easily understood. Anita Knowles, director of communications, told the BMJ that the trust ensures leaflets are necessary and would not duplicate a good leaflet from elsewhere. The patient publications team is made up of two staff team who call on additional resources as needed. They made a decision not to use external agencies because “it was just as cheap to do it ourselves. We wanted the control, as well as the ability to change information rapidly,” Knowles told the BMJ.

The problem of varying quality of leaflets is not new; in 1998 the BMJ published an investigation into the quality of leaflets on asthma given out by general practitioners. It found inaccuracies and outdated information from the NHS, drug companies, and charities.5 In an accompanying editorial, Angela Coulter, now a researcher at the University of Oxford, called for a national strategy.6

She told the BMJ that “progress has been slow.” The problem is that “the NHS still fails to take this seriously.” For example, printable patient information leaflets are available as part of the Emis computer system used by general practitioners, which are Information Standard accredited but which come with advertisements attached.

“In the patient’s eye, that can devalue it,” Coulter said. “At the moment, in most NHS trusts, there is no one who has responsibility, or, if they are junior, often they have no budget. Often leaflets are written with the best of intentions in someone’s free time, but they can end up amateurish, with the evidence and uncertainties not expressed clearly. Yet there has been so much work internationally into setting standards,” such as the Delphi method, a structured communication technique.

A spokesman told the BMJ that NHS England is launching a “major project” in September to standardise all information going out to patients, which will then go to the Information Standards Board for Health and Social Care for approval.7 One of the aims of this board, which works throughout the NHS, is to reduce inefficiencies through reducing replication. A spokesman said that there needed to be “clinically endorsed, consistent information available across the country,” which would “lead on the standardisation of all information going out to patients.”

The internet has given us a great gift of instant information sharing. The challenge now, Coulter emphasised, is to adopt high standards, updating information regularly, and making it easily accessible. The size of the NHS makes this hard to do, but it is wasteful to franchise out the core role of information provision to the private sector because each trust is paying again for the same information over and over. This is one area of the NHS where efficiency savings look ripe for the picking.

Source: BMJ

 

 

Psychotic depression.

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This patient works as a psychiatrist in the hospital where she is treated, and has been admitted, for depressive disorder. She tells her story, and describes her feelings about other health professionals’ attitudes towards her

I had an easy early life. My family was a combination of conservative and intellectual, and throughout medical school I fitted in. There were, perhaps, a number of warning signs of what was to come—a long period of blackness after a relationship ended, and one of poorly controlled mood before final exams—but hardly different from many others. I was unaware at that time of family history.

I coped well with the stress of house jobs followed by a number of senior house officer jobs and a period of travelling. I then decided, for romantic and literary reasons, to do my GP training year in Cornwall. It was hard work, but all went well until, after my marriage, I found myself rather unexpectedly—though not unhappily—pregnant. Quite suddenly my life fell apart. I don’t remember feeling depressed, but I became terrified of everything, afraid to eat, and convinced the baby would die. I saw a psychiatrist, who dispensed with note taking as it might apparently affect my career, and ended up briefly in a psychiatric hospital before being looked after by one of my fellow GPs, my husband, and my mother-in-law. I had no idea what was wrong with me.

When I was around five months pregnant, we moved back to Edinburgh and went to our GP, who immediately referred me to a psychiatrist, who sent me straight to the local hospital. I had last been there as a medical student, several of my friends and colleagues worked there, and my previous life as a doctor was instantly shattered. I had hoped to train as a psychiatrist myself, and I thought that possibility was now extinguished, that anyone who had been a psychiatric inpatient would never be accepted as a colleague.

I don’t really know how I felt—bleak and exhausted, but also sad and angry, especially when I saw other doctors apparently confident and successful. I had a series of admissions, both before and after my baby was born.

What was my diagnosis? How to classify the feelings of fear, terrible fatigue, anxiety, and blackness? Depression was what I was told, but I formed an unshakeable conviction that everyone thought I had a personality disorder. Looking back, I still think my personality was sorely tested by my experiences. I did improve with electroconvulsive therapy and medication, but hated taking them.

Finally, after a period of relative stability, I managed to return to work, to a junior hospital post. I hadn’t worked for two and a half years, and felt incompetent and inadequate. I subsequently finished my GP training, but realised I would be unlikely to get a job given my medical history. When I look back now, I wonder how I had the courage, or the cheek, to apply for a psychiatric training scheme. One of my psychiatrists advised me not to, and I am generally very reluctant to do things others disapprove of, but I think I knew I would always regret not doing it.

I had a long commute, as I, and others, felt I could not work locally. I loved the work and think I was good at it, but I can’t pretend it wasn’t emotionally draining. I have always felt like two people—the psychiatrist and the psychiatric patient—and it is very difficult when they overlap. I even use two names, as do many female doctors, but I think my reasons are slightly different.

My training proceeded well, and I was lucky to experience no problems with exams. Life was not straightforward, though. I had an early stillbirth, and, perhaps inevitably, a relapse followed. But I picked myself up, and staggered through another pregnancy as well as my training. Looking back, I think I was very anxious for some years after this, but relatively well otherwise, at least partly due to my always supportive husband. I think I took medication for much of the time, but certainly had some lucky periods where I didn’t.

My husband has always found the switch from spouse to carer and back rather difficult, particularly during periods of recovery, and especially given that I don’t really appreciate what I’m like when ill. He also finds my occasional non-compliance with medication understandably infuriating. But I admit I worry more about the potential effect on my three daughters. Any illness in a parent is both frightening and annoying for children, and mine isn’t an easy one to understand, or indeed to explain to friends or teachers. Worse, I’ve not always been there for them, and one of them has experienced emotional difficulties. I can’t prove that my illness caused this, but I’m pretty sure it contributed, and I shall always bear the guilt.

Six years ago I gained a consultant post in addiction psychiatry in the local hospital where I had been a patient. I had been a trainee with my colleagues, and, for the first time, had not divulged my history. In fact, I thought they knew and was rather mortified when I subsequently discovered this was not the case. But I couldn’t quite believe it—a job near my home in the specialty of my choice. Initially, I found that walking past wards where I had been a patient was troubling, but I gradually stopped thinking of myself as a patient.

Unfortunately I have since had episodes of illness, one necessitating an admission out of area and another resulting in a series of electroconvulsive therapy as a day patient in the hospital where I work. I still find the experience of illness troubling and confusing—in many ways it makes me feel like a different person. When I read a textbook description of psychotic depression, my diagnosis, I can’t marry it with how I feel. I do feel low, but also agitated and frightened, and simply very ill. I still fear that others think I have a personality disorder. And this, for me, is one of the harder aspects. I work in a hospital where I’ve had some significant admissions and treatment. I find it hard when I speak with doctors who have treated me. But what is far worse is the uncertainty as to whether others—doctors and nurses—have seen me as a patient, or have listened to the inevitable hospital gossip, and formed opinions.

My memories of my periods of illness are very muddled, and I simply don’t know who knows or who has treated me. My close colleagues are hugely supportive, but I’ve heard talk about psychiatric patients, including about healthcare professionals, and it’s not all kind. It’s difficult to sit in a ward round talking with a nurse I suspect may have seen me in much unhappier circumstances, and I can’t help wondering whether people think I shouldn’t work here. My current plan is to be more open and to tell people, but that’s not easy either. Often they’re very embarrassed, and I don’t want my patient status to become the most important thing that people know about me.

Some day I hope my two selves will become less separate, and my working life will become more comfortable. Until then I will try to comply with my psychiatrist’s advice, try to remain well, and to make sure the psychiatrist remembers what the patient experiences.

A clinician’s perspective

Rebecca meets the diagnostic criteria for recurrent depressive disorder (ICD-10 code F33), and during an episode she often has psychotic symptoms. At her most ill, Rebecca is convinced that she is a terrible doctor, about to be referred to the General Medical Council, and a burden on others. Her view that she has a personality disorder rather than depression, which I do not agree with, also comes to the fore. Reassurance, rational challenge, and cognitive therapy do not cut much mustard at these times.

Depression that may benefit from treatment is so common—affecting about 5% of the population at any one time, about 20% each year, and 50% over the average lifetime—that it is part of most lives in some way. Psychotic depression is, however, rare, with a lifetime risk of only 0.35%. In other words, less than one in 100 people with depression will have psychotic symptoms. There is much debate about how to manage “everyday” depression, but psychotic depression needs treatment to avoid the risks of dehydration, starvation, and suicide. Electroconvulsive therapy is the evidence based treatment of choice and can be lifesaving.

It took almost two years of drug treatment, including two courses of electroconvulsive therapy, before Rebecca recovered from her first episode 20 years ago. She completed her training under the cloud of her illness but had good spells, sometimes without treatment. About four years ago, another course of electroconvulsive therapy, in another health district, was followed by a return to maintenance treatment with lithium and fluoxetine. Towards the end of last year, we avoided hospital admission with quetiapine augmentation, but some combination of Rebecca stopping that drug, going back to full time work, and perhaps a naturally worsening episode underneath it all led to a relapse earlier this year.

Reinstating and then maximising the dose of quetiapine helped a bit, affording some respite from insomnia but bringing weight gain. Rebecca and her husband suggested electroconvulsive therapy, done locally to reduce disruption to the family but as an outpatient to minimise the chances of bumping into colleagues. All the medical and nursing staff involved went out of their way to make it go successfully with a minimum of fuss. We have recently added tri-iodothyronine hormone augmentation, with apparent success, so that quetiapine can be reduced. Once Rebecca has been well for 6-12 months, we could phase out medication.

Rebecca is now back to her usual self—an excellent clinician and active in educating students, mentoring trainees, audit, and research. Her abilities make her a highly valued member of the team, and a dry and often self deprecatory wit contribute to her popularity around the hospital and beyond.

I admire Rebecca for having the courage of her convictions and publishing this piece. It is brave to do so, but I doubt that anyone will think less of her for having depression, and most will applaud her in being so open about it. As she says, it will allow her to know that everyone knows, or at least could know, rather than having to deal with the uncertainty of not knowing and people being unable to talk about it. This will not, of course, preclude insensitive remarks, even if they are made in the guise of empathy or with the best of intentions. What we really need to reduce and ultimately defeat the stigmatisation of psychiatric disorders, and to allow people to practise talking about them with some sophistication, is capable people like Rebecca saying how it is: that one can have severe psychiatric disorders, respond to treatment, and get back to a productive, happy life at work and with family.

What are the learning points from all of this? For starters, that careers advice is best left out of doctor-patient consultations. That the vicissitudes of life as a clinician or academic are as nothing compared with accepting and managing a major illness and the treatment for it. That it is difficult for people to share their innermost thoughts with a doctor, especially if he or she is a colleague. I am reminded of the primacy of patient experience, the power clinicians have, and the trust required in and of them. It may not be straightforward having a doctor as a patient, but it is a lot easier than it is for a doctor to be a patient. Being a doctor is almost always easier than being a patient. Having a colleague as a patient helps one to appreciate the inevitable but necessary power imbalance in the doctor-patient relationship. Perhaps that is why I was so pleased that Rebecca told me, at our most recent appointment, that it was the first time she hadn’t been nervous about seeing me.

Preparing this text has crystallised these thoughts for me. I hope the article contributes to de-stigmatising depression among doctors and others, and helps Rebecca and those around her manage her illness as best we all can.

Stephen M Lawrie

Useful resources for patients and health professionals

  • Doctors Support Network (www.dsn.org.uk)—A confidential self help group for doctors
  • Depression Alliance (www.depressionalliance.org)—Provides information and support services in the UK
  • Royal College of Psychiatrists (www.rcpsych.ac.uk)—UK professional and educational body for psychiatrists; provides educational material and information for psychiatrists and general public
  • Samaritans (www.samaritans.org)—National charity providing confidential emotional support
  • Befrienders Worldwide with Samaritans (www.befrienders.org)—Worldwide confidential emotional support
  • National Institute of Mental Health (www.nimh.nih.gov)—Provides mental health information and education in the US
  • Beyondblue (www.beyondblue.org.au)—National, independent, not for profit organisation working to address issues associated with depression, anxiety, and related disorders in Australia

Source: BMJ