This post contains a letter sent on October 31, 2022 to the Minister for Mental Health in Scotland about Gordon Hughes pictured here with his mother a few weeks before the events outlined below. Pictures and headings have been added.
Kevin Stewart MSP,
Minister for Mental Wellbeing and Social Care,
Dear Mr. Stewart,
I was recently approached by Craig McDonald, a reporter for the Scottish Mail on Sunday, enquiring about Gordon Hughes, currently (and for the past five years) detained at the State Hospital, Carstairs. Mr. Hughes’ mother, Ruth, is concerned for his life.
I live now in Canada, which means I have not interviewed Mr. Hughes in person or reviewed his medical notes. But I was based in Wales for over 30 years and have been involved in cases like that of Mr. Hughes in Scotland, England, Wales, and Ireland both before moving here and since.
I understand Mr. Hughes ended up in Carstairs by accident; it was the clinical facility with a bed available rather than the one appropriate for his care.
He had prior diagnoses of autism, ADHD and learning disabilities.
I understand that several months after admission to Carstairs he was assaulted. This event led to staff being dismissed. After this, he was diagnosed with schizophrenia, even though several doctors have made it clear he does not have schizophrenia. He has been on an indefinite restriction order since, and a cocktail of heavy-duty psychotropic medication. Contact with his family has been cut-off; he is allowed no visitors or even parcels/post.
His family fear he may die in hospital relatively soon, even though he is now only 24.
I do not intend to speak to the accuracy of Mr. Hughes diagnoses, or to the role of staff in the assault on him in hospital or other events. I am, however, well versed in cases like this that have arisen in Scotland, where I have had a chance to assess the person, their family, and their records in detail. This puts me in a position to brief you on some of the bigger picture issues.
Caring for Neurodiversity
Caring for people with learning disabilities/autism undoubtedly can be difficult and these difficulties led to ‘events’ at Ely Hospital in Cardiff in 1967, which changed views about how best to help. Ely triggered a push to community care. The psychotropic drugs that were then new seemed to provide an apparently inexpensive safety net to underpin this de-institutionalization.
The push to de-institutionalization combined naivety with ideology. In the 1990s, several studies reported a use of excessive psychotropic polypharmacy, in both institutional and community settings. The evidence indicated that reducing medication burdens would commonly help rather compromise mental states. Some doctors paid heed, others did not.
Since the 1990s, a number of factors have played into this failure to monitor. These are linked to the assays/trials that are used to license drugs such as the ones Mr. Hughes is on. First these assays are not designed to evaluate the full range of effects these drugs have. They are bureaucratic rather than scientific in nature, aimed at getting drugs on the market. Second, the data from these assays are not available to anyone – not even the regulator. Third the articles in journals purportedly reporting on the effects doctors might expect when using these drugs, both the benefits and the harms, are ghostwritten – the apparent authors on the authorship line do not write the papers and neither the authors nor their ghosts have seen the data. This can lead to negative studies being published as positive with the drugs described as effective and safe.
As a consequence, the harms these drugs can cause have, for many doctors, vanished. When people are put on treatments and get worse, this is interpreted as a worsening of their condition and leads to increased doses of the problem drug and the addition of more drugs.
A drug like a gun can save our lives or take them. Everything hinges on the doctor shooting the bullet. Across the board doctors are giving more and more drugs and polypharmacy is now a leading cause of death, contributing to a fall in UK and US life expectancies.
Another factor is that since the 1990s, health in the UK has been managed. This has played a part in transforming healthcare into health services.
Decades ago, when entrepreneurs set up businesses, religious orders or voluntary organizations or the NHS set up hospitals, which they administered. Like the entrepreneurs, who never thought they knew more about how to operate complex machinery in the factory than the skilled machine operators they employed, priests, nurses and NHS administrators never thought they knew more about medicine or nursing than the staff they employed.
Entrepreneurs were sidelined as factories and businesses brought in management in the 1950s. Consulting their organization flowcharts, managers thought they knew more about the business than their skilled staff. One way to sustain this impression was to support automation which replaced skilled operatives, who might question decisions, with machines who could not disobey, tended by unskilled labour.
This later occurred in the pharmaceutical industry, where doctors and scientists were replaced by managers. The kind of knowledge that constrained marketing was lost. What would you expect when someone who had previously been a tobacco or oil company CEO became a pharma CEO? What would you expect when the law firm that represented Big Tobacco one month was representing Big Pharma the next.
It once seemed inconceivable that changes like this might happen in healthcare but in the late 1980s this began to happen. Nursing and medical staff were initially unaffected. But the ghostwritten medical treatment literature that began appearing in the 1990s was built into flowcharts, which we call Guidelines – including the NICE Guidelines. These are based on the published literature which is close to entirely ghostwritten with no access to its underlying data.
These flowcharts gave managers, who had no medical background, or medical people who had migrated into management because they didn’t like meeting people, a template which seemed to indicate how the job should be done. Staff who were concerned that their patients were suffering from drug harms – that the new ghostwritten ‘scientific’ literature didn’t apparently support – became problems to be dismissed or referred to the General Medical Council (GMC).
This had consequences. Costs can only escalate if your guidelines tell you, as they do, that the latest (less effective and more costly drugs) should be prescribed first on the basis of pharmaco-economic data that claim you will save money even though they are more expensive – the savings hinge on the validity of the data which you are not allowed to see.
Costs can only escalate if the harms to which staff now turn a blind eye lead to more admissions than the conditions they are being used to treat, as is now the case for diabetes, hypertension, osteoporosis and mental health disorders like depression or the autism Mr. Hughes has.
Costs increase further if these harms are viewed as illnesses for which the appropriate treatment is seen as an increased cocktail of drugs, with no monitoring of the risks for premature death from these cocktails. No treatments are licensed for the treatment of harms related to psychotropic medicines such as suicidality on antidepressants.
Mr. Hughes case brings in further issues linked to this last point – the treatment of harms.
He has been diagnosed as having autism and ADHD. Let me take ADHD first. While there is a real core to ADHD, and I wrote the first UK Guidelines on the appropriate drug treatment of ADHD in children, Mr. Hughes almost certainly does not have this condition. It has ballooned in recent years almost entirely down to pharmaceutical company marketing. Adult ADHD is entirely a marketing creation. If Mr. Hughes has ADHD, the medications he is now on are not indicated for it and are likely to make it worse.
His diagnosis of autism brings out even more complexity. We have ballooning rates of autism in the UK. For a long time, I thought this stemmed from a change in fashions with autism replacing learning disability as the acceptable term for some difficult conditions, allied to the possibility of financial and other supports the diagnosis brought. Once you set up a system, people, as well as health systems, and pharmaceutical companies learn to game it.
However, some of my research has illustrated fairly robustly that SSRI antidepressants are linked to a doubling of rates of autistic spectrum disorders and other behavioural difficulties in the children born to mothers who have been taking them in pregnancy. This is unlikely to be just an antidepressant issue. The consumption of all medicines in pregnancy quadrupled between 1990 and 2010 and is steadily increasing with younger, college educated, and more affluent women leading the way.
I’m not telling you what causes autism or autistic spectrum disorders. My data asks questions rather than provides answers. I am concerned that we are not investigating what is happening. Unless we know what is going on we are not well-positioned to know how to treat people like Gordon Hughes who have conditions that attract labels like autism today.
If these conditions have been caused by a treatment like an SSRI or other medicines in utero, how sensible is it to give related drugs in large doses to someone harmed in this way? These drugs are not licensed for ‘autism’ and there is no evidence that any of them are likely to help, and grounds to think they will lead to the outcomes we see in Mr. Hughes’ case.
Some of my research offers you opportunities to redeploy monies in mental healthcare to help people like Mr. Hughes. A substantial body of evidence indicates schizophrenia, the illness at the core of mental health provision hitherto, is falling dramatically in frequency. Many still get this label, but the core disease is now less common offering scope to reconfigure services.
Unlike autism, where something in the environment may be producing an increase in frequency, better obstetric care and falling levels of environmental lead may underpin the fall in rates of schizophrenia.
In terms of redeploying monies freed up by this change in a chronic condition, where might the money go?
When I made these points to a former Welsh Minister of Health, he said the Assembly were trying to increase psychotherapy provision. It was impossible to get him to see that this is not the answer. As things stand, increasing psychotherapists will only increase the amount of psychotropic drugs prescribed. Psychologists and counsellors are encouraged to be ‘evidence-based’ but the evidence is ghostwritten and they routinely resort to recommendations for drug treatments which family doctors dispense.
This is particularly the case for minors – and Mr. Hughes was a minor when his current difficulties began. The result, as Jeremy Hunt declared in 2016, when Minister of Health, is that children’s mental health is the greatest point of failure of the NHS. Newspapers regularly now refer to a ballooning crisis in children’s mental health.
The literature on antidepressant assays in minors has been, until recently at least, entirely ghostwritten, with a total divide between what the publications say – these drugs are safe and effective and the raw data which shows that none have been shown to work, for conditions they might be expected to work for, such as depression. For autism or related conditions, we have no data for companies to make any claims.
Before telling you how I would use the money that could be freed up, let me tell you about some other young people from Scotland in similar situations to Gordon Hughes.
Evelyn, Luise and Others
Evelyn is one. Linda, her mother contacted me soon after her daughter, a teenager, developed problems. While she possibly had some underlying problems that might get termed autistic spectrum or neurodiversity, if you saw Evie’s photographs in 2019, you’d have figured you were looking at someone destined for a successful life. The problem is any hint a teen might be anxious or having difficulties now – a break up with a boyfriend for instance – leads to a prescription of an antidepressant or some such.
There seems to be no common sense left. No appreciation that these drugs, which I use, while often helpful, can also damage brains and are more likely to do so in people somewhat neurodiverse. Doctors know nothing about the links between these drugs and clear evidence of brain damage – like osmotic demyelination, evident on brain scans. Irreparable brain damage is possible after only a few days exposure.
As Linda found, however, the response of the services has been to deliver more drugs, even as she reported to them that successive treatments were progressively making things worse.
A common element in all these stories, that I will develop later, is that women like Linda, or Ruth and thousands of others – almost certainly some of your own relatives or friends – give a story whose central element is Why do you not Believe me? The person themselves, or the person who knows them best, is best placed to spot subtle and alarming changes emerging on treatment but they are dismissed by people who barely look at their patient, don’t listen to them, and are not in a position to interpret these changes.
Many will think women like Ruth and Linda do not have pertinent expertise. Women in this position even get diagnosed as having Munchausen Syndrome – the intimation being that they are causing whatever is going wrong for their child, sometime by questioning what the doctors claim is the right option. There are rare cases when parents harm their children but this likely only happens in about 1 in 10,000 cases or less. Trying to game the system, some people also invent adverse effects that are not linked to treatment. But if most of us, including parents, aren’t right in most cases when reporting on treatment effects – medicine simply cannot work. Doctors notably completely agree with people who say treatments are working.
You might think things would be different if the young person had a doctor in their family. But having a good doctor in your corner makes no difference.
I saw a charming young woman from Scotland nearly a decade ago, who had little wrong with her other than shyness. A wise family doctor recognized there was nothing wrong with her that a drug was going to put right. Later, however, she saw another family doctor, who unsolicited put her on an SSRI – what harm could there be?
She deteriorated rapidly and ended up in a mental hospital where she was diagnosed with psychosis and later bipolar disorder and put on a cocktail of heavy duty drugs that has produced lasting damage. Her father was a doctor with decades of experience. Given what happened, let’s call him Dr. Kakfa. Nothing Dr. K could do or say made a difference. His questioning was not welcomed by the hospital or by the community mental health team later, who viewed the family as the problem. You can read how bad things got in two posts on RxISK.org – A Kidnapped Daughter and A Kidnapped Daughter 2. (All of the posts on RxISK.org that come up under the Medical Kidnap heading are worth reading).
There was no option for this family but to emigrate from Scotland.
Dr K’s daughter has been living at home (in a different country) and drug free now for almost a decade, proving the diagnoses given were disastrously wrong. She has been left with injuries, including skin problems, which does not help shyness, interstitial cystitis, and other problems.
She is isolated and unwilling to have contact with medical systems for physical illnesses, benefits, or anything else. Neither you nor any medical person is in a position to tell her she is making a mistake in this respect, nor can you correct her medical record.
I spent the better part of a decade in North Wales looking after a most charming and intelligent young man with a physical condition that masqueraded as a mental disorder. He responds idiosyncratically to psychotropic drugs. They make him catatonic. His mother made efforts to draw attention to the problems treatment was causing. I supported her when she and he moved into my catchment area. As is now well known, bad systems can make good people do some unbelievable things. The system took against this mother in an extraordinarily vindictive way.
Rather than pay heed to me, a leading UK expert on the treatment of the rare disorder her son had, the price for supporting his mother was serial management referrals to the GMC. These referrals gave me a clean bill of health and led GMC to recognize that some referrals to them, in particular from management rather than patients or families, were likely acts of harassment.
There is no point in a patient, family or me referring a medical manager to GMC – as GMC deal with strictly clinical and not-management issues. Nor are they interested in investigating doctors who have leant their names to ghostwritten articles or related ‘non-clinical’ issues.
For me the option of emigrating to Canada became more appealing by the day.
We mistakenly celebrate the removal of stigma from mental illness. The stigma has shape-shifted rather than gone away. It comes into view when you do not do as you are told. People who resist self-evidently bad options today are often treated as brutally as people with a mental illness ever were in periods we now regard as shameful.
As one of the people I know who has been badly damaged by the system put it to me recently, this is a Failure of Western Democracy. Or perhaps I could put it this way. I was never impressed by the Wisdom of Solomon story in the Bible. You are now faced with similar scenarios in the case of Gordon, Evelyn, and others. It doesn’t take a great deal of wisdom to side with Ruth and Linda, or doctors in this position. But it does take bravery. I will be impressed if you find it within yourself to side with these mothers.
Dear Luise by Dorrit Cato Christensen is one of the greatest books in healthcare. Published in 2011, it comes with a preface by Poul Nyrup Rasmussen, a former Prime Minister of Denmark, who tells you that this grim account is all too real and too common, and we desperately need to restore care to systems that have lost their bearings.
Luise could have been Gordon, Evie, Dr Kafka’s daughter or my patient. She had minimal easily lived with problems until she slipped into the mental health system. As things began to go wrong, Luise told Dorrit the system would likely kill her. It did.
Gordon Hughes has told his mother that his only way to explain all the drug changes and their bad effects is they are running an experiment on him. For it to be an experiment, the doctors would have to know what they are doing – they don’t. He is being given cocktails of drugs that have no evidence base or rationale other than one of being seen to do something.
You don’t need to have a medical training to appreciate Dear Luise. It’s about Care. Care is passionate and brave – not something that systems get when managers tell staff to wear name tags and express the wish that patients and relatives will have a nice day. Dorrit and Poul likely thought Dear Luise might make a difference, but things are worse now than they were then.
The Care System (both social care and health care) is broken – especially for the vulnerable. What do I mean by Care? I mean two things. First, while our drugs can do amazing things, whether they do so or not depends on the person prescribing them. The best thing we can do, quite often, is not to use them in the first instance or certainly to stop them in response to being told they are not helping. One form of Care means having the bravery to tell a prescriber their best intentions are not working out. A Caring prescriber will make feedback like this possible.
Caring arises from human engagement. There is a wonderful photograph of a deaf baby responding to his hearing aid first being turned on. You can see him light up. I’m sure your staff can find this for you, and I will include it with a public facing version of this letter. Caring does something like this for all of us – we light up and between us and those Caring for us we regularly solve problems more effectively than medicines can.
In this instance, I am thinking of the Caring staff employed in residential homes for the elderly or the vulnerable as well as mental and other health services. They need to be paid decently commensurate with an appreciation of how much good they can do. They can make people light up and if properly empowered would be able to give valuable feedback on the effects of medication. This is key to Caring but no-one is likely to be able to do it well if they have to hold down several jobs.
Where will you find the money for this? First if you, or others, negotiating the price of drugs had access to the data from the assays that bring these drugs on the market, rather than the marketing hype in our best medical journals that masquerades as science, you would be in a better position to negotiate a value based price.
Second a better use of medicines would produce a fall in healthcare costs – not because you pay less for drugs but because you have to fund less inpatient care linked to overuse of these drugs, and less screening and other services linked to the marketing of these drugs. At present, you fund a great deal of pharmaceutical company marketing in Scotland.
Third, managers, responsive to governments, or private equity, look at the flowcharts and see a spot for Drugs but not for Care. What could be better than giving the latest, most effective and most expensive drugs? The ghostwritten evidence claims we will save money. Besides Care has not been proven to work. If things go wrong, the evidence will be on our side.
In mental health, Mental Health Review Tribunals (MHRT) are a supposed check on this. But no doctors now have a training in how to establish a drug might be causing a harm. Doctors today are also explicitly informed by bodies from WHO down that in the event of an apparent problem they should assume the condition not the treatment is causing the problem.
MHRTs are like inquests. Coroners at inquests have no box to tick to indicate that a prescription drug has caused a death. Street drug yes, prescription drug no. The doctor may think the drug killed his patient, but s/he will be advised by their defense union lawyer never to admit this. The illness is always the problem. Defense unions, which are a business, save money if the problem is always the illness. If it is self-evident to a lay coroner the drug did it and s/he reports this to the medicines’ regulator, the regulator will respond that there is nothing they can do as the doctor did not finger the drug. (I have correspondence with the Welsh Minister of Health on this).
In the same way, MHRTs never finger the treatment as the cause of the problem. The doctor who sits on the panel will never blame a colleague for prescribing more drugs in response to a deteriorating mental state. Rather than a system that offers us the possibility of reclaiming our liberty, MHRTs are more likely to double-lock the door behind us.
Coming from Ireland, I have sympathy for the efforts of your party to review a system put in place a little over 3 centuries ago, in the wake of a financial crisis.
My primary concern is with another system put in place a little over 3 decades ago that is now making healthcare financially unsustainable. You could do great good for all of us who live in the Western European Archipelago, and help restore Care to health, were you to publicly ask some simple questions about access to trial data. En passant, this would provide an engaging and democratic platform for some political party.
I am available to be consulted on any of these issues by you or members of your team. Letters from me on these issues and responses from NICE, various Ministers of Health, Chief Medical Officers and others are available on a Politics of Care forum.
This forum was inspired by the efforts of an Irish family to get to the bottom of self-evident service failures that led to the death of a family member. A family in a similar position to Ruth and Gordon and the others mentioned here.
Professor David Healy MD FRCPsych
Mr Stewart’s office responded on November 15. Stewart Response.
A reply to the response has been sent.
RxISK acknowledges that the experiences of those who have been harmed by medical treatments are the cornerstone on which it is built, and believes this should be the case for all of medicine.
See Black Robe, White Coat for more detail on this people acknowledgement