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,
MinisterMWSC@gov.scot
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.
Yours sincerely
Professor David Healy MD FRCPsych
Mr Stewart’s office responded on November 15. Stewart Response.
A reply to the response has been sent.
People Acknowledgement
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
susanne says
With reference to getting hold of medical records. It is a total fiasco in UK
I have requested information from 5 different persons working at NHS Digital as to whether people can down load and/or print them or forward them from an APP .They are simply incompetent to be dealing with the issue of access to notes
The Patients Association gave me an idea which may work ie make screen shots of pages I am not computer savvy so don’t know if that would work.
This is the latest update -This site is intended for health professionals only
Pulse Today
Home Analysis Technology What we know (and don’t know) about the records access rollout chaos
What we know (and don’t know) about the records access rollout chaos
What we know (and don’t know) about the records access rollout chaos
Costanza Potter
14 November 2022
The ‘Citizen’s Access Programme’ – which gives patients automatic access to their prospective GP records through the NHS app – has been marked by chaos and confusion. It was due to come in on 1 November, but there seems to have been a delay.
The issue has dominated talk within general practice for the past few weeks. There have been reports of practice managers threatening to quit, and a number of groups and organisations have warned about patient safety issues.
But most of all, there is confusion. We have looked at what we know, and don’t know, about practices’ responsibilities and duties.
If there are any questions you would like to see answered, contact newsdesk@pulsetoday.co.uk.
Are patients currently able to access their GP records through the NHS app?
According to the latest information from NHS England, practices that asked their system supplier not to enable the functionality by 4 November will see a delay applied until 30 November. Those that have not opted out by the deadline will see the introduction of the ‘citizen access’ programme earlier, in a phased manner.
Are practices allowed to apply blanket exclusion codes to all patients?
Many practices are currently asking how they pause the rollout through opting all their patients out of the scheme – a position recommended by the BMA.
NHS Digital has said that this approach ‘is not advisable’, and that practices who are struggling to provide the necessary safeguards should contact their commissioner for ‘support to meet their obligations’. Some local commissioners are also discouraging practices from applying blanket exclusion codes to their whole practice list.
Contractually, however, it seems as though practices are allowed to do this. The obligation for practices to offer access to prospective records is set out in the GP contract. The requirements are dense, but worth quoting in full: ‘The contractor must, if its computerised clinical systems and redaction software allow, offer to [patients] the facility to access online the information (other than any excepted information) entered onto [patient]’s medical record on or after the relevant date [1 November 2022, when the functionality was switched on].’
So as long as an ‘offer’ is made to all patients, there is no requirement to have them all opted in to automatic access. The definition of this ‘offer’ is not completely clear and NHS Digital say they won’t decree what this means. They have said that ‘communication must be effective so that it is made to all registered patients’. They say that placing a poster in the waiting room would therefore not be acceptable. Importantly, they say practices ‘should agree a plan with their local commissioner’ with regards to communication about the scheme.
In addition to prospective records access, practices are also required to promote and offer access to information ‘held in the coded form’ and the entire historic record upon written request, NHS Digital said.
How do practices block patient access to their records on their systems?
If you need to block access, you can do this by:
Adding exclusion SNOMED codes to individual patients’ records or those of groups of ‘at-risk patients’ ahead of the switch-on – or even to your whole practice list, depending on whether you have made the offer of access to all patients;
Amending an ‘individual patient configuration’ – although it remains unclear how practices can do this – or redact the records after the switch on;
Updating the practices’ organisational settings to ‘disable the record access functionality’ – NHS England has said this is an option although it would mean practices reversing an action they were previously told they were contractually required to do. Pulse has enquired whether taking this step would mean practices are in breach of their contract;
Disabling patient access to parts of their record that are ‘of concern’, such as disabling their access to documents stored in their record – although this option may not be available in all GP clinical systems.
How do the SNOMED codes work?
NHS Digital guidance has set out that practices can use two different SNOMED codes relating to records access.
An ‘enhanced review indicated’ code (1364731000000104) applied before the switch-on will prevent the patient from automatically receiving access to the new entries in their record because it will stop the online services account from being updated.
However, this won’t change any access settings the patient already has. So if a patient is identified as being at risk of harm, any access they already have must be reviewed by the practice. And the code must still be applied to relevant patients who have previously been denied access to their records to prevent automatic access to data added after 1 November.
This code will also prevent patients who create a new GP Online Services account after 1 November 2022 from automatically receiving access to future information when they sign up, NHS Digital said. Patients create a new account when they register for the NHS App or when they move practice (see below).
If the patient is no longer considered to be at risk, adding an ‘enhanced review not indicated’ code (1364751000000106) will override the ‘enhanced review indicated’ code. This means they will automatically receive access to information on 1 November 2022 or when a new GP online services account is created.
What happens when patients move practice?
If patients change practice, any SNOMED codes will transfer across with their record via the GP2GP transfer. But NHS Digital has admitted that when patients transfer, their GP online services account at the old practice is deleted and when the patient next logs into the NHS app, a new account is automatically created at the new practice.
Any new account is automatically given access to prospective information when the patient registers at the new practice. So if the GP2GP process fails, or a new GP online services account is created before the GP2GP transfer takes place, the practice must manually update the records access settings to prevent automatic access. However, if the SNOMED code is present in the record, the patient will only be able to access summary information such as medications, allergies and adverse reactions.
Official guidance previously revealed that patients moving practice will lose access to any data from their previous surgery, meaning that if they request this again their new practice will have to repeat the process of redacting their records.
Are GPs contractually obliged to respond to trivial queries from patients arising from records access?
GPs have raised concerns around whether they are contractually required to respond to patient queries related to their records, such as patients asking for clarity on an abbreviation or wanting their GP to correct details like a ‘4 weeks history of abdominal pain’ to ‘3 weeks’.
NHS Digital has said that there is a ‘professional responsibility for healthcare staff to ensure that patients understand the care they receive’. It added that additional information is provided on the NHS website ‘to support patients to fully benefit from access to their health information, including a list of common abbreviations’.
Pulse asked NHS England to clarify the contractual position, but it declined to comment so this remains unclear.
Will GPs need to change the kind of information they put on patient records?
NHS England has said that GPs will need to ‘consider the potential impact’ of each entry into a patient’s record, including documents and test results, and will need to ‘know how to manage this as a change to workflow’.
Its practice readiness checklist also set out that information in patient records should be ‘clear, accurate and legible’. An accompanying piece of guidance outlined how GPs and all staff adding to records must add information ‘with access in mind’.
It said that the use of abbreviations should be ‘limited’ because there is a ‘risk’ they could be ‘misinterpreted’ by patients or other healthcare professionals using shared care records.
The RCGP has also published guidance saying that practices are ‘responsible for ensuring that any potentially harmful or confidential third-party information in the patient’s record is not visible to the patient online’.
What will be the process for patients turning 16 after the switch-on?
GPs have also raised concerns around the lack of advice for dealing with patients turning 16 and therefore becoming eligible after automatic access is rolled out.
NHS Digital guidance said that the SNOMED codes can be applied to patients aged under 16. If applied to under-16s, the codes will prevent them from automatically gaining access to records entered after their 16th birthday when they turn 16.
It remains unclear whether there will be any support to help practices ensure they keep track of these patients and take any necessary action if they have not applied blanket SNOMED codes to all under-16s.
Meanwhile, the guidance also said that the SNOMED codes do not affect proxy access. It remains unclear whether this means that practices cannot add a SNOMED code to prevent parents or guardians from accessing a child’s records.
When will patients have access to information added to their records pre-1 November 2022, and what will practices need to do?
Pulse revealed in October that NHS England plans to enable patients to request their historical GP records through the NHS App from next year. This will not be automatic access, so patients will still need to request access to the information.
NHS England said that access to historical records will be ‘phased in carefully’, but it remains unclear when in 2023 this will take place.
It also remains unclear whether practices will need to take action ahead of this change.
What concerns are remaining?
Myriad concerns remain among the profession, including the potential for abuse of practice staff whose names appear in the record – which cannot be redacted. Anecdotally, Pulse has heard that practice managers may be considering resigning over the change.
Meanwhile, a study has found that providing patients with online access to their GP records has unintended negative consequences that limits its usefulness – such as extra workload for practices and distress for patients.
And GPs have warned via Twitter that some practices searching their patient records for codes for safeguarding and domestic abuse have identified that as many as 55% of records need reviewing.
Will it change how secondary care colleagues add information to GP records?
GPs have also raised concerns that they will be responsible for redacting information added to records by other healthcare professionals, such as letters and test results.
The Royal College of Radiologists has said that radiology departments must consider how imaging reports ‘are constructed in the future to ensure clear accurate information is conveyed to clinical colleagues but also with consideration that these will be read by patients’.
It added that it is ‘vital that resources are put in place to ensure that all patients have had a chance formally to discuss imaging findings with a member of the clinical team before they can see their report online’.
susanne says
What are they really afraid of in UK- It’s Not just the insulting remarks, the lack of time, the lack of computer savvy – It is vitally that the incorrect diagnoses and treatments they would expose once people had access to full notes. It is still worth getting hold of whatever notes are available now.
Re: Patient access to medical records: What is happening with the rollout in England? Matthew Limb. 379:doi 10.1136/bmj.o2677
Dear Editor,
Sweden’s “Journalen” 10 year anniversary of patient access to records conference Uppsala 9th and 10th November 2022 celebrated the 10th anniversary of patient access to records in Sweden.
Medical ethical standards for sharing records with patients were clearly stated. These ethical standards are beneficence, non-maleficence, autonomy, confidentiality, informed consent, truth telling and justice.
Delegates attended from Sweden, Finland, Netherlands, Germany, USA, Norway, UK and Estonia to discuss the patient access to primary and secondary health care records. Sweden has been allowing patients to access their records in primary and secondary care for 10 years. Estonia, Norway, Finland, the USA, UK, Finland and The Netherlands also allow patients to access their records with mixed and varied availability.
The discussion covered
1. The EPR and patient access to records systems in Estonia, Germany, Sweden, Netherlands, USA, UK, Norway and Finland
2. European Health data space
The European Health data space “supports individuals to take control of their own health data, supports the use of health data for better healthcare delivery, better research, innovation and policy making and enables the EU to make full use of the potential offered by a safe and secure exchange, use and reuse of health data
The European Health Data Space is a health specific ecosystem comprised of rules, common standards and practices, infrastructures and a governance framework that aims at empowering individuals through increased digital access to and control of their electronic personal health data, at national level and EU-wide, and support to their free movement, as well as fostering a genuine single market for electronic health record systems, relevant medical devices and high risk AI systems. European Health Data Space (europa.eu)
3. Open Notes
OpenNotes is the international movement advocating greater transparency in healthcare. Through research and education, we identify and disseminate best practices for sharing medical information with patients and their care partners. “OpenNotes is not software or a product. It’s a call to action.” OpenNotes Patients and clinicians on the same page
4. Philosophy and ethics of patient access to records Medical ethics – PMC (nih.gov)
Beneficence – “act for the benefit of the patient
Non-maleficence – “Not to harm the patient”
Autonomy – “to be able to exercise self-determination”.
Informed consent
Truth telling
Confidentiality
Justice “fair, equitable and appropriate treatment of persons”
5. Patient access to mental health records and doctors’ notes not to be shared
Should mental health patients, especially when in a paranoid or psychotic state, for example, be able to access their medical records
6. Redaction and requests for non-sharing of information
Children’s and parents’ access to children and adolescents’ medical records. In Sweden no patients or their parents are allowed to see the records of children between the age of 13 and 15 years old. Sweden is revisiting this policy.
7. Usability of health portals and digital divides
8. Patients contributing to their records through patient portals
9. Usability standards for portals
HIFA profile: Richard Fitton is a retired family doctor – GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data
Competing interests: No competing interests
susanne says
Another update in UK This site is intended for health professionals only who seem to be unable to grasp the nettle as other countries have done successfully for decades. If anybody has rightly expressed anger or mistrust or argued about ‘treatment’ etc they are likely to have an entry on record they are unaware of. It would still be an idea to request manual records now before the roll out puts more obstacles in the way . Obviously there will be situations where safeguarding is necessary but historically one thing they are concerned about is it was a bit of a joke amongst medics to make derogatory remarks even using offensive codes This will be well known to those of an age when this was no secret R .S. D.W. and colleagues who are drawing up the guidelines now will remember the anxiety expressed by GPs about their entries when people were to be given access to paper notes years ago but it is never mentioned. Many were openly published in Pulse Today medical jounral.They should be obliged to make a formal record exactly word for word if redacting anything rather than simply record a redaction .
.’Earlier this week it was revealed that practices who opt all of their patients out of automatic access will not be in breach of their contract, as long as they manually offer access to each individual patient.’
Management in Practice
Practices fear safeguarding risk of staff names within patient records
by Beth Gault
17 November 2022
However, practices have been advised by a GP expert that information – including staff names – can be redacted if there is a risk of harm to team members.
Automatic access to records is now due to happen by 30 November, according to a new target date set by NHS England following delays to suppliers switching on the capabilities because of concerns voiced by practices.
But there are still questions over the safeguarding consequences of the changes, including for staff members.
Dr Ralph Sullivan, a……..
‘I know GPs who are very concerned about this. It’s mainly the safeguarding risk when it comes to healthcare workers or social care professionals’ names,’ he added.
He explained it would be possible to redact records that included staff names in the case of a patient with a history being aggressive and if there was a significant risk of harm to practice staff.
‘If you knew, or had a good reason to suspect, that somebody who’d written something in the record would be at risk because the patient could read it, then you could redact it,’ said Dr Sullivan.
‘I don’t think anybody’s ever tested that in law. But that would be my advice.’
But, in principle, the practice would need to remove the whole consultation or action from the record, and not just the name, according to Dr Sullivan.
‘On principle, I think you’d have to redact the whole document, the whole consultation, or a free standing read/SNOMED code with the attached staff name,’ he said.
Record the justification
Practices who redact records on the basis of safeguarding staff would need to justify their decision in order to uphold it from a medical legal point of view, advises Dr Sullivan. They would also need to include the reasons for redacting the record in the notes, and then also redact that record.
The reason for this alteration would be on the basis of preventing harm to someone, not because the information is confidential, Dr Sullivan said.
‘Patients have a right to know who has been looking after them and what they’ve said and done, so that information typically should be in the public domain,’ he added.
However, patients may still be able to guess their record has been redacted.
‘The idea of redaction is that it’s meant to be invisible, so there would be no positive indication of redaction for the patient,’ said Dr Sullivan.
‘But they might assume something’s been redacted if you’ve been to see your practice nurse and you wait a week and there’s no consultation record.’
The RCGP’s tookit on access to records says practices could go one step further and refuse access to online records altogether.
It says: ‘Access should only be refused where there is a clear risk of serious harm to the safety of the patient or members of the practice team, or to the privacy of a third-party.
‘It may be possible to give them access to a reduced part of the record such as the Summary Care Record or restrict access to appointments and repeat prescriptions.’
It adds: ‘Record access should only be refused or restricted after discussion with the practice leads for GP Online Services and Safeguarding, or after seeking further professional advice from a local relevant agency or national medical indemnity organisation.’
In situations where safeguarding concerns have not previously been flagged, there are still fears that patients can react badly to information presented in their record.
,,,,,,,,
The BMA has previously voiced concerns over the safety of implementing automatic access to records for patients and has several times called for a pause on the rollout.
Deputy chair of GPC England at the BMA, Dr David Wrigley, told Management in Practice there were ‘growing concerns’ that the redaction software practices are expected to use to review records is ‘not fit for purpose’.
He added: ‘This is another example of how ill-thought-through this programme is, and we urge NHS England and NHS Digital to address this as a matter of urgency, not only for the sake of practices, but also their patients.’
annie says
I guess this is one for the ‘do not engage’, do not ‘listen’, ‘do not learn’ file.
Stewart has opined and thereby set back any motion for understanding.
The feeble and derisory nature of response when confronted with necessary and thoughtful information should have, could have, moved things forward, even just a tad.
SIGN is nine-years old.
NICE
Psychosis and schizophrenia in adults: prevention and management is eight-years old.
7 Steps
https://managemeds.scot.nhs.uk/for-healthcare-professionals/7-steps/
https://www.therapeutics.scot.nhs.uk/wp-content/uploads/2018/04/Polypharmacy-Guidance-2018.pdf
This particular Bureaucrat is telling granny how to suck eggs, passing the buck, and strikingly there is a complete lack of empathy.
‘We have a system and we are sticking to it’ leaves people like Stephen O’Neill, together with those mentioned, written out of the picture, left out in the cold, dead for no good reason and family and friends bravely and courageously fighting a corner over many years which has absolutely no hope of seeing any light of day.
Medication Without Harm
http://apps.who.int/iris/bitstream/handle/10665/255263/WHO-HIS-SDS-2017.6-eng.pdf;jsessionid=E733B144601C77CB33DBF13C8CBF2FB8?sequence=1
I have been driven and inspired by three things. Firstly, an awareness of studies in the 1960s that identified sources of medication error that can, and do, kill and harm patients in hospitals around the world today, nearly sixty years on. Secondly, that there are many individuals and groups in the fields of pharmacy, medicine, nursing, and other professions, who have been fighting for decades to see the day when medication safety would become a global priority; their passion has always been to save lives from this long-standing intractable type of avoidable harm. Thirdly, over the years, I have spoken to many people who have lost loved ones to medication-related harm; their stories, their quiet dignity and their acceptance of situations that should never have arisen have moved me deeply. It is to the memories of all those who have died due to incidents of unsafe care that this Challenge should be dedicated.
Sir Liam Donaldson
WHO Envoy for Patient Safety
This is Caring –
Stewart has missed the boat, dropped his anchor, sunk his torpedo.
At grass-roots level, The Royal College of Psychiatrists and General Practitioners pay-no-heed to ‘medication without harm’, will unfailingly keep their blinkers on and ride on regardless –
Whistling in the Wind…
annie says
The Timing was Great, the Patient Discovered…
James Moore
@jf_moore
Delighted to chat with David Healy @DrDavidHealy of @RxISK
for the @Mad_In_America #podcast. We examine polypharmacy and David discusses the difficulties encountered when trying to reduce medication burden. #pharmacology #mentalhealth
Full interview here: https://bit.ly/dhealy
https://www.madinamerica.com/2022/11/david-healy-polluting-our-internal-environments-perils-polypharmacy/
Moore: That tick-box culture is causing an awful lot of harm, isn’t it, because it’s not based on outcomes for the patients, it’s based upon things you can actively and easily measure as a throughput. We’ve dispensed X number of drugs or we’ve administered X number of procedures for people, rather than asking people how they feel.
Healy: Yes, and the system will work a lot better if we let people drive it, rather than trying to drive them.
‘down in the weeds with people’ …
tim says
I listened to this brilliant podcast twice. Scientifically fascinating with wisdom, expertise, integrity and humility.
Thanks to D.H. and James.
susanne says
With reference to referrals to therapists. Even the disgraceful therapy services which are rarely available to those who want them in UK. give false hope Therapists in the NHS are usually part of the psychiatric network which fobs individuals off with drugs
‘Meanwhile, a new report from the NIHR has warned GPs are forced to start young people on antidepressants against NICE guidelines, due to long waiting times for psychological therapies.
The analysis found that just one in four teenagers prescribed an antidepressant in England had visited a child and adolescent psychiatrist.’
One in six had visited a general specialist children’s doctor (a paediatrician), and one in 25 had attended adult mental health services,’ the report added.
From :- Therapy Meets Numbers
Creating the best therapy experience for every client
DROPOUT IAPT MANUALISED THERAPIESOCTOBER 30, 2022
When ideology meets reality
….despite recovery rates falling to their lowest for five years, limps on.
IAPT: The promise we were sold
IAPT: The reality it’s delivering
Superficially, it made for a compelling argument.
IAPT was sold to the last Labour government by Professor Lord Richard Layard as a means of alleviating the burden of common mental health conditions such as anxiety and depression, one that would be cost-effective and eventually pay for itself by increasing productivity and reducing state benefits.
Again, a compelling argument. The broad premise is illustrated below. Take a very large cohort of people with the most common mental health problems and give them a NICE approved course of treatment. Two-thirds will complete treatment. Of those, one-half will recover. A significant proportion of those on benefits will move off them.
(images of data supporting this article are on the web site throughout)
As we’ve highlighted before, the reality has been rather different. For 2020 – 21, nearly four in ten clients that started treatment had one session only. Clients that achieved recovery represented just 21.3% of those that were referred to IAPT, and 29.9% of those that started treatment.
And now, according to latest IAPT Annual Report, the programme’s recovery rate has fallen to its lowest rate for five years.
IAPT: The reality it’s delivering
I take no pleasure in bringing you the picture presented by the latest IAPT performance data. It’s pretty dispiriting, so I’m going to keep this brief.
Of those clients that entered treatment, the proportion of those that ended treatment having had two or more sessions was 57.7%. Put another way, more than four in ten clients didn’t end treatment. That figure, as shown below, is a full four percentage points below that of the previous year. The proportion of clients finishing treatment is falling.
Not surprisingly, the proportion of clients that achieve recovery at the end of the treatment is also falling. For the year 2021 – 22, it stands at more than two and a half percentage points lower than the previous year.
The headline recovery rate most often shown for IAPT is based on the percentage of clients that start treatment at ‘case’ level and end below it. The rate shown in the 2021 – 22 annual report is 50.2%. Having filleted the numbers myself I come up with a figure of 50.3%, but I’m not going to quibble over the difference.
Whichever it is, the recovery rate for the past year has fallen to its lowest level for five years.
Similarly, the premise behind IAPT is, on paper at least, a seductive one. Take a manualisable psychological therapy, deploy it on an industrial scale, alleviate a lot of misery, and recoup the costs. What’s not to like?
Where human processes are concerned, however, real life delivery is so much more complex than producing widgets. The gap between IAPT’s aspirations and reality is stark. As well as woeful attrition levels and mediocre outcomes, one estimate puts the true cost of IAPT as at least 5 times greater than has been claimed. All very predictable, all very avoidable.
It’s high time for a full independent audit of IAPT. Just don’t hold your breath…………….
My r.r. in BMJ 2022; 378 doi: https://doi.org/10.1136/bmj-2021-069094 (Published 25 July 2022)
Cite this as: BMJ 2022;378:e069094
Re: Safety-netting in the consultation
Dear Editor
There isn’t enough attention paid to people who have fallen through the net by unhelpful referrals or diagnoses of unexplained causes of illnesses which turn out to be serious physical illnesses labelled as psychosomatic. If the health workers consulted are baffled , have no inclination to learn from some one describing their symptoms as best they can or has an interest in or has connections with those who promote psychosomatic medicine the road to increasingly serious illness is ever more likely.More should be published about the harms caused by this . Some weeks ago there was a discussion about doctors gaslighting which people who have not been listened to or undermined were trying to highlight as a problem in consultations . The term is perjorative but reveals a useful lesson if it could be used non defensively, in poor relationships and often disrespectful communication which obviously does not get recorded. .. Once psychosomatic, or psychological is highlighted or coded on notes the possibility of receiving appropriate treatment disappears rapidly. The trail from initial consultation becomes confused as different health workers pick up and add to it leaving individuals stuck insisting something is physically wrong but ‘gaslit’ or referred to psychology departments or practitioners of psychosomatic medicine when trying to correct this stream of incorrect input, By then there is no safety net unless the person is fortunate enough to find a practitioner who believes in and shares their integrity and persistence as a person with potentially valuable new knowledge they have been trying to impart often for years
Competing interests: No competing interests
Barry Gale says
The response of the Scottish Government is typical hypocrisy. While publicly boasting of the value it places on Lived Experience, putting it “front and centre” of all policy, behind the scenes it (along with courts and tribunals) kowtows to professional opinion, especially medical. It continues with its own dogma about safeguards and world-leading human rights legislation, and ignores people who have experienced that the safeguards are not effective.
Kevin Stewart MSP refuses to meet the mothers of Gordon Hughes, Kyle Gibbon and Jamie Henry. Refuses to discuss what could be done behind the scenes. He prefers attending tea parties and photo opportunities. The SNP does not listen to unpopular truths.
Pogo says
Well. The protocols referenced seem very laudable to me so why isn’t Carstairs Hospital following them Mr. Stewart?
Why as a Minister for Mental Wellbeing and Social Care aren’t you alarmed by evidence that suggests that Carstairs and other hospitals under your watch, appear to have unhealthy organizational cultures?
Not so much (as Kim Cameron and Robert Quinn would describe)
a Clan culture (internal focus and flexible) – A friendly workplace where leaders act like father figures. [1]
but a Hierarchy culture (internal focus and controlled) – A structured and formalized workplace where leaders act like coordinators.
As for Western Democracy. I’m reminded of Dr. Robert Hare’s resent paper in the Journal of Criminal Justice. What are you doing to avoid the British Isles from slipping into the hands of the wrong sort of politicians and corporate sponsors – as described here?
“The results of this study provide unique information about the psychopathic propensities of a sample of state violators of human rights. The pattern of PCL-R scores was consistent with an extreme disposition for the self-serving, callous, and ruthless treatment of others, without guilt or remorse, yet absent a prior documented history of severe antisocial, externalizing behavior.” [2]
References:
[1] Wikipedia, Organizational Cultures. https://en.wikipedia.org/wiki/Organizational_culture#Kim_Cameron_and_Robert_Quinn
[2] Robert D. Hare, Elizabeth León-Mayer, Joanna Rocuant Salinas, Jorge Folino, Craig S. Neumann; Psychopathy and crimes against humanity: A conceptual and empirical examination of human rights violators, Journal of Criminal Justice, Volume 81, 2022, ISSN 0047-2352,
http://www.hare.org/HareetalJCJ2022.pdf
susanne says
What Kevin Stuart said in August 22
Politics
15 Scots with learning disabilities and autism in hospital for more than 20 years
Fifteen Scots with learning disabilities and autism have been living in hospital for more than 20 years, it has been revealed.
By Alistair Grant
15th Aug 2022, 4:55am
An investigation by BBC Scotland Disclosure found that more than two decades after Scottish ministers said everyone should be living independently in the community, dozens of patients have been stuck for years behind locked doors in psychiatric wards and units.
Disclosure: Locked in the Hospital, which airs on BBC One Scotland at 8pm tonight, found one person with a learning disability has been living in hospital for more than 25 years and another has been recorded as a “delayed discharge” – cleared for release to the community – for more than eight years.
Responses to Freedom of Information requests revealed at least 40 people have been in hospital for more than ten years and at least 128 for more than a year.
Carstairs State Hospital
The Scottish Government said the findings were unacceptable and local services must do more to get people into their own homes.
It is investing £20 million and has pledged to get most people out by March 2024.
The BBC investigation found that nine people with autism and learning disabilities are currently in the high security State Hospital at Carstairs – despite not having been convicted of a crime before they went in – including one man who has been in for more than 17 years.
Carstairs said it provides a safe and therapeutic environment for patients and that some people take a long time to respond to treatment.
It is the only maximum security hospital in Scotland, holding those who have committed particularly violent crimes.
Scottish ministers published The Same As You? Report in 2000, which established the right for everyone with a learning disability to live in their own homes and communities.
Dr Anne Macdonald, the Scottish Government adviser on learning disabilities, told the BBC: “It might be possible that viewers would think that maybe people with complex support needs need to be in hospital, or that that’s the best place for them.
“And in actual fact, that’s not the case… It’s absolutely not acceptable that people are living in hospital when there’s no clinical reason for them to be there.
“People with learning disabilities shouldn’t be living in hospital. A hospital is not a home, and it’s a human rights issue to have a home and to be able to have a connection with your family… There should be an element of urgency about it.
“We shouldn’t just be accepting it as status quo. We need to be working harder on this, and doing better.”
She said she was shocked by the revelation that one patient has been held in hospital for 25 years, describing it as “an awful statistic”.
Kevin Stewart, the SNP minister for mental health and social care, said he is planning a new bill to help tackle the problem and will appoint a commissioner to oversee progress.
He has already pledged to get most people home by March 2024. A national register is being created because some people have been “lost” in the system.
Asked about people being held in hospitals for decades, he told the BBC: “That situation is unacceptable. I’m determined that we do much better here.”
In Feb the culture in the place was exposed – No comment Kev? IT is sadly predictable that the people incarcerated there would suffer similar tormenting
ByLanarkshire Live
07:50, 28 FEB 2022UPDATED16:51, 28 FEB 2022
The Carstairs boss is accused of ‘pulled a nurse on to his lap and told her she’d never be promoted’.
An inquiry was launched at the State Hospital in Carstairs following whistleblowing claims against two male nurse managers by a female staff member
The woman alleged she was pushed out of her job by the men’s bullying campaign and she was so tormented she attempted suicide.
A number of witnesses also told the ongoing inquiry of a widespread bullying culture at the hospital where at least two nurses have tried to take their own life in the last two years.
The inquiry heard claims staff were victimised for being off sick and a “boys’ club” mentality among certain senior staff left nurses too terrified to speak up.
The woman lodged her complaints last summer and the hospital drafted in external investigators and HR experts Kenny Small and Ruth Hibbert of NHS Lanarkshire.
The complainant claimed the man she accuses of harassment made sexual innuendo about her appearance, telling how her how good her bottom looked.
She said he would make crude suggestions and propositioned her asking if she wanted to come home with him.
It is also claimed he would rub his thighs and tell her to sit on his knee and on one occasion he pulled her on to his lap when they were alone in an office.
She also alleges the other male manager who became her boss after a transfer was aggressive and threatened he could harm her career.
There were allegations he would publicly berate staff and dismiss them as being “fu**ing stupid” and they lived in fear if they made a mistake.
It was claimed if a nurse was ill, he would stalk them on social media to check if they were faking it.
Some staff claimed he was power crazed and would change nurses’ shifts to be vindictive.
It was also claimed he voiced his displeasure when nurses became pregnant.
The hospital has been at the centre of a number of allegations by staff in the past with 29 bullying complaints lodged over a period of five years to 2015.
Last September this paper revealed whistleblowers’ claims that a recruitment crisis at Carstairs was putting workers and patients at risk.
Staff said manning levels were dangerously low.
Last night, a spokesman for the hospital said it would not comment.
susanne says
Request Reference: FOI/005/22
Published: 27 June 2022
Information requested:
1. How many patients/people are in Carstairs with a) a diagnosis (or primary diagnosis) of
autism or b) with a learning disability?
2. How many of these patients (ie patients with a diagnosis of autism and or learning
disability) were referred from the community not the courts or have not been referred following
a conviction?
3. What is the longest period of time in years any of these patients has spent in Carstairs?
4. What is the longest period of time in days any of these patients has spent in Carstairs?
5. What is the average time they have spent in Carstairs?
6. And what are the ages of these particular patients?
7. Are any of these patients recorded as “delayed discharge” and if so for how long has their
discharge been delayed?
Please provide responses to questions 3 – 7 based on the cohort of patients from question 2.
Response:
1. a) 5 b) 17
2. 9
3. 17 years 4 months
4. Between 6325 and 6355 days
5. 3094 days (8.5 years)
6. The range of patients’ ages are 23 – 63 years, with an average of 40.1 years and
a median of 40 years.
7. No.
Advice and Guidance
Under section 38(1)(b) for FOISA, information is exempt from disclosure if the information
constitutes personal data and one of three addition conditions is met. In these cases the
condition in section 38(2A)(a) –would contravene any of the data protection principles,
applies.
The first data protection principle (UK GDPR Article (5)(1()(a)) – “Personal data shall be
processed lawfully, fairly and in a transparent manner in relation to the data subject.”
In response to question 1 a); We have not provided a breakdown of patients with a primary
diagnosis of autism. If we were to disclosure this information, it would be possible to identify
one or more patients when linked to other publically available information. This information is
therefore exempt from disclosure under FOISA section 38(1)(b).
In response to question 5; We have provided a range of days because if we were to provide a
specific number of it would be possible to identify a patient when linked to other publically
available information. This information is therefore exempt from disclosure under FOISA
section 38(1)(b).
In response to question 6; If we were to provide the individual ages of the patient cohort that
the request relates to a motivated individual would be able to identify individuals by cross
referencing this information with other information already in the public domain, such as TV,
newspaper, social media and other online articles. This information is therefore exempt from
disclosure under FOISA section 38(1)(b).
Once an individual has been identified, it discloses part of their medical diagnosis, which is
part of their medical records and classified as special category information under the UK
GDPR.
All patients of NHS Scotland have the expectation that the information held about them by
health boards will be kept confidential. T.
susanne says
Mad in Canada SCIENCE, PSYCHIATRY AND SOCIAL JUSTICE
Rethinking Psychiatry …. Robert Whitaker Speaks in Montreal
13/11/2022022
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Robert Whitaker, founder and president of Mad in America, gave a public lecture at Concordia University on November 10th. ‘Rethinking Psychiatry: How the Failure to Identify the Biological Causes of Major Mental Disorders Opens Up New Possibilities for Long-term Recovery’ was hosted by AMI-Quebec.
When introducing Whitaker, AMI-Quebec Executive Director, Ella Amir, told the audience her organization is committed to sharing “emerging knowledge related to mental health, even when it is controversial or difficult to digest … we invited Robert Whitaker because we believe he has something important to say and while it may not be obvious to everyone, his is a hopeful message with encouraging prospects.” Comparing Whitaker to Copernicus, Amir highlighted the courage it takes for those who make pioneering contributions by challenging the status quo.
While in Quebec, Robert Whitaker gave psychiatry grand rounds at McGill University Health Centre. And he was interviewed by The Montreal Gazette – ‘We need to rethink how we treat psychiatric illness: author’.
annie says
A wonderful exchange between Stevie Lewis and Mark Horowitz, which leaves this remark rather flat…
‘Debunking the (never terribly convincing) serotonin hypothesis has nothing to do with whether or not we should prescribe SSRIs.’
https://www.bmj.com/content/379/bmj.o2350/rapid-responses
whocaresinsweden.com
9 November at 21:41 ·
Do you know someone who is having a hard time getting off antidepressants?
Watch this video from the International Institute for Psychiatric Drug Withdrawal where Stevie Lewis and Dr Mark Horowitz talk about how to safely end your medication in consultation with a physician and with the support of friends and family.
The video is recommended to everyone who works in healthcare in Sweden.
https://www.youtube.com/watch?v=T3bfpV2oV0Y
Stevie explains how her GP made it very difficult for her to come off Seroxat, and Mark explains with great precision how this happens –
I hope others can be spared the hell I went through with depression pills, by an NHS psychiatrist who says coming off them left him suicidal
https://www.dailymail.co.uk/health/article-7202413/I-hope-spared-hell-went-depression-pills-says-NHS-psychiatrist.html
“a lot of people learnt the hard way” Mark Horowitz
susanne says
Article From GM Watch
https://www.madinamerica.com/2022/11/david-healy-polluting-our-internal-environments-perils-polypharmacy
re the interview …There was A 15 minute warning that D H was to be ‘fired’. due to a very few complaints from individuals and GPs . But Should we wonder what was really behind getting rid of him?
Under siege in the ivory tower published 21yrs ago…….
Anne McIlroy, The Globe and Mail, 8th September 2001
Public issues – from genetic engineering to psychiatric illness – have become more complex than ever, requiring academic specialists to help sort them out. Yet Canadian universities get more and more of their funding from private, corporate interests. What happens when these facts collide – for example, when a scientist discovers that a funder’s drug is dangerous? As one researcher put it: ‘This place is a fortress’
A professor is told to move her lab into a pesticide-tainted storeroom shortly after she criticizes genetically modified food — which just happens to be the product of companies linked with the school. Another corporation tries to prevent a doctor from telling her patients about the dangers of a drug, and the university-affiliated hospital she works for does nothing to support her.
A job offer is withdrawn after a researcher criticizes a popular psychiatric drug. And even in the humanities, a scholar who studies the history of scholarship itself is turned down for a high-profile post, apparently because of his controversial views on corporate influence.
In an era of proliferating university-corporate partnerships, academic freedom isn’t what it used to be. And the ideas that are kept from all Canadians as a result could be hazardous to our health.
Just ask David Healy. The British researcher saw a job offer from the University of Toronto and one of its teaching hospitals evaporate after he expressed concern about the potential negative effects of antidepressants such as Prozac.
None of his colleagues at the U of T or the affiliated Centre for Addiction and Mental Health (CAMH) publicly questioned the decision, and several privately told The Globe and Mail that they were afraid that doing so would cost them the research funding their careers depend upon.
This week, though, a group of 27 leading scientists from around the world came to Healy’s defence, publicly accusing the University of Toronto and one of its teaching hospitals of muzzling academic freedom. They said the decision had “besmirched” the name of Canada’s largest university and “poisoned the reputation” of the CAMH.
Eli Lilly, the maker of Prozac, is a major donor to the centre, and contributed $1.5-million to its $10-million capital fund. In 2000-01, the company also financed $1.3-million in research under a formal collaborative relationship.
Pharmaceutical and biotechnology companies now fund 16 to 30 per cent of all research at big medical schools such as McGill, Queen’s and the universities of Toronto and British Columbia. The pharmaceutical industry now funds 42 per cent of medical research in Canada.
Large donations from pharmaceutical and biotechnology giants and other corporations pay for new buildings and additions that carry their names and corporate logos. Corporate funds allow universities to update old laboratories, fund academic chairs (often named for their sponsors) and pay for expensive scientific equipment and research projects.
Indeed, universities across the country are far more dependent on corporations than ever before, and keeping donors happy has naturally become a priority. While it’s most visible at medical schools, the Trojan-horse effect of corporate largesse is, critics say, afoot everywhere in the modern academy.
In 1999, for example, the Council of Canadians asked tenured University of Guelph plant biologist Ann Clark to set up a Web site about genetically modified foods. The professor of sustainable agriculture solicited scientific analyses and critiques of GM foods from about 40 academics.
Ten agreed to participate, but the rest said it was too risky to speak out. Many said they would post papers on Genetic Engineering Alert (www.canadians.org/ge-alert) — but only anonymously. Most of those willing to go public had retired from academe and were no longer at risk of losing their labs, research funding or promotions if their views upset large corporate donors and research partners.
“The rest were worried about being blackballed, and I admire that they were even willing to contribute,” Clark says. “Protecting their identities was a constructive response to a stifling situation.”
Within months of launching GE Alert, Clark got a taste of what her colleagues were worried about: She was stunned to learn that her laboratory was being arbitrarily moved to a seed-storage room that had been sprayed with pesticides over the years.
The university denies the move had anything to do with her anti-GMO views, but Clark says she is convinced it did. “It is not harassment, that is too strong of a word for what happens to academics who go against the corporate line,” she says. But “it means you don’t get grants funded, it means you don’t get invited to collaborate on things. It means when you speak at a meeting, people don’t listen. You are marginalized.”
Over the past 10 years, the University of Guelph has doubled the amount of funding it gets from corporations, which now accounts for about 15 per cent of its total research budget. In 1999-2000, the year Clark launched the Web site, the university received $1.2-million in research funding from Novartis, one of the corporate champions of genetically modified crops.
While still fighting the lab relocation, Clark posted a critical analysis of the federal government’s way of evaluating genetically modified foods on the GE Alert site. Her boss, dean Rob McLaughlin, publicly denounced her for “unethical” behaviour, which touched off a furor on campus.
McLaughlin eventually apologized, saying he had been worried people would think she was speaking on behalf of the university on an issue that lies outside her own field: She specializes in pastures, not genetically altered crops. However, many of the concerns she had expressed were echoed this year by an independent panel of scientists appointed by the government.
McLaughlin, now vice-president of alumni affairs, denies he criticized her out of worry that her comments would offend corporate donors. He says at least one other researcher was also asked to move to accommodate a departmental restructuring. Academic freedom at Guelph is well-protected and cherished, he says. “We have a long history of faculty being able to express their views on everything.”
In the end, Clark wasn’t forced into the storage room. Her new lab is very small for her research team, but at least she doesn’t have to worry about pesticide residues. A small victory — but so far, there have been few wins in the battle to preserve academic freedom.
“Academic freedom is what allows universities to fulfill their social responsibility to the public. It assures that faculty are free to say what they feel about any idea, proposal, or research question they are examining,” says Jim Turk, executive director of the Canadian Association of University Teachers and editor of a book called The Corporate Campus.
“Only when faculty can speak freely are the public able to trust that advice and conclusions are not corrupted by special interests of powerful groups.”
And at a time when many public-policy issues have gotten so technical as to be beyond the grasp of a layperson, Canadians have come to rely on universities to provide objective analysis. David Healy, for instance, is one of the few people in the world with the expertise and the inclination to pour through drug-company data to find evidence that the popular antidepressant Prozac may cause some people to kill themselves.
Yet now some academics are loath to risk retribution by asking questions to which corporate donors may not want the answers.
“I’m not sure I would say [academic freedom] is dead, but it is under serious threat,” Ann Clark says. “What tends to happen is it is retired academics or government scientists or very senior people who no longer fear retribution who are able to speak out. The younger ones, who are most vulnerable, can’t really say anything.”
University professors have historically been vulnerable to pressures from the ruling forces of the day. Academic freedom, the lofty ideal all Canadian universities say they embrace, is defined on most campuses as meaning that professors can speak their minds without fear of reprisal.
In the 12th and 13th centuries, academic freedom meant that the pope’s soldiers would protect scholars from the local authorities, York University professor David Noble says. “They just had to do everything the pope said.” Noble has written extensively on the history of universities, and took a starring role in his own academic-freedom drama in the spring.
In 20th-century universities, starting with the Second World War, the main patrons of institutions were the agencies of the state, primarily the military in the United States, he says.
In the mid-1970s, the phrase “intellectual capital” became fashionable, and industrial countries turned to universities as their economies shifted away from manufacturing toward high-tech. Universities were no longer ivory towers, and began to play a key role in the new economy. The United States led the way, followed by Canada and to a lesser extent Europe, where universities have traditionally been less utilitarian and less reliant on corporate funding.
In the United States, it became routine for university presidents to sit on the boards of large multinational corporations. Noble conducted a study at the end of the 1980s that showed the presidents of U.S. universities often made more from corporate directorships and retainers than from their salaries.
In Canada, the federal government cut back funding for basic research in the 1980s and universities began turning to the private sector to keep their laboratories running. There has been an injection of new federal money in the past few budgets, but most of it is tied to joint ventures with industry. If researchers want the new funds, they have to show they are working with corporate partners.
Closer ties between industry and academia is a positive development, argues Tom Brzustowski, president of the Natural Sciences and Engineering Research Council, one of three funding agencies through which federal money is delivered to researchers. “If we help Canadian companies produce new products, then that is new economic activity, which means new jobs and prosperity.”
In medical schools, close ties to industry give researchers an opportunity to conduct clinical trials and laboratory experiments that could benefit millions of Canadians.
But they also create the potential for wrenching conflicts of interest.
Turk, whose Canadian Association of University Teachers (CAUT) has been devoted to protecting academic freedom since the 1950s, claims there has been an “unprecedented explosion” in the violation of academic freedom in the past several years.
The most famous, no doubt, is the case of Nancy Olivieri. In 1996,the University of Toronto researcher was carrying out a study at the Hospital for Sick Children on deferiprone, an experimental drug for patients with a rare blood disorder called thalassemia. The research was sponsored by Apotex, the drug’s manufacturer.
When Olivieri decided she had to warn patients about potential problems with the drug, Apotex threatened her with legal action to enforce a confidentiality agreement she had signed. She charges that the university, which was courting the largest donation in its history from Apotex, did not back her up legally or morally. Four other doctors, who allege they were harassed and punished when they spoke out on the matter, have joined her in a grievance against the university.
The CAUT launched an independent investigation by three prominent Canadian academics to report on the incident, which is expected to be made public in the fall.
In both the Healy and the Olivieri cases, the University of Toronto denied academic freedom was at issue. Senior officials argued that Olivieri was in a purely scientific dispute and that Healy’s case was a human-resources issue the teaching hospital had right to manage as it saw fit.
In both Healy’s and Olivieri’s cases, rumours circulated quickly through the university and the media about their characters: She was difficult, a troublemaker who couldn’t get along with others. He was a Scientologist, a wacko practitioner of junk science.
And academic peers are often enrolled in the character-assassination campaign. In fact, the official explanation of why Healy did not become the clinical director for the mood and anxiety program at the CAMH is that his future colleagues were so disturbed by the views he expressed in a Nov. 30 speech on campus that they didn’t want him in their midst.
He had already accepted the job when he participated in the colloquium about psychiatry in the 21st century. His views about the dangers of the family of antidepressants that includes Prozac were well known in the international psycho-pharmacology community: He believes that the popular drugs can cause a small minority of patients, as few as 1 per cent, to fall into a state of extreme anxiety and cause them to harm themselves or others. Given that 40 million people around the world have taken Prozac, Healy argues that this is a significant public-health issue; Eli Lilly insists that Prozac is safe.
In the Nov. 30 speech, he repeated those arguments, and said the data show that Prozac and similar antidepressants may have been responsible for one suicide for every day they have been on the market.
According to the letter sent months later by the Centre for Addiction’s CEO, Paul Garfinkel, the “extremity” of the views expressed in the speech disturbed many of his future colleagues: “Your future colleagues simply did not want you here as a leader of a clinical program, which was the job for which you were recruited.”
Turk and Healy believe that there is more to the story, and are considering legal action. They say very few of his future colleagues — including Garfinkel — were in the audience on the fateful day.
But during the period between January last year, when Healy was first offered the position, and November, when the job was withdrawn, he published a critical paper in a journal devoted to ethical issues published by the Hastings Center in New York. After it appeared, Eli Lilly pulled its $25,000 (U.S.) annual donation from the Hastings Center.
Healy then presented data at a conference from a study he had done that found two out of 20 healthy volunteers felt suicidal while taking a Prozac-like antidepressant. And in July, 2000, a month before he accepted a formal written offer from the CAMH, Healy had a run-in with Charles Nemeroff, a powerful and highly respected U.S. psychiatrist who has received funding from Eli Lilly and other pharmaceutical companies.
Healy had been preparing to act as an expert witness in several cases where families were suing pharmaceutical companies because they believed psychiatric drugs had caused a loved one to commit suicide or to kill others. At a medical conference in Britain, Healy says, Nemeroff aggressively warned him that it would be bad for his career to get involved. Healy recalls the encounter as “scary.”
Nemeroff’s office referred all calls to his lawyer, who has not responded to a request for an interview. Nemeroff attended Healy’s speech in Toronto in November; the CAMH has confirmed that it consulted him about their new hire.
Within days of the speech, David Goldbloom, physician-in-chief at the CAMH, was sending urgent e-mails to Healy saying they had to talk, but Healy was away. When he got back to Wales, he found another e-mail message from Goldbloom telling him the job offer had been withdrawn.
Turk says he believes he knows why the CAMH got cold feet. “I think it is likely that some influential people said, ‘If you hire Healy, you are going to have a very hard time raising drug-company money for research,’ ” says the teachers’-association head. “And the CAMH administration panicked, and decided to dump him, precipitously.”
The CAMH says the decision about Healy had nothing to do with fundraising or with their discussion with Nemeroff. Goldbloom has declined to be interviewed.
Turk says Healy’s case is the most egregious violation of academic freedom in Canada in years, one that means no job in academe is safe. He admires him for coming forward, risking his reputation, when he could have stayed quietly at his job at the University of Wales, where he continues to conduct research and treat patients.
Yet his story has drawn not a single word of public support from anyone on staff at the CAMH or the University of Toronto’s medical school. Four researchers told The Globe and Mail they disagreed with, were even outraged by, the decision to let Healy go. But they were unwilling to go on the record, for fear of losing their labs or research funding.
“This place is a fortress,” one said.
“What happened to David Healy is a unacceptable violation of academic freedom,” another said. “But I don’t want to lose what I have spent my life working for.”
One man who watched the Healy drama with intense scholarly interest was David Noble. The York historian has documented the rise of corporate influence at universities in Canada, and says he wasn’t surprised that doctors at the CAMH weren’t willing to speak up. “They see that they have reason to be afraid, but rather than stand up to it, and expose it collectively, they just cave.”
Less a month after Healy went public, Noble, a left-wing activist and vocal critic of the commercialization of universities, found he had a more personal reason to be interested.
Noble had been selected by the faculty of humanities at Simon Fraser University to hold the prestigious J. S. Woodsworth chair, which was created to foster critical debate over public issues, in memory of the labour activist, pacifist and politician.
The search committee sought input from 13 outside academics about Noble’s academic work and activism. But the university administration blocked his appointment after Noble refused its highly unusual request to do a background check — using several academics he has publicly criticized as references. None of them, he says, were experts in his field.
Meanwhile, the administration alleged that the department of humanities hadn’t followed proper hiring procedure, including making sure women were considered for the post. Rumours spread rapidly around campus that Noble was a difficult man, an undesirable addition to the tenured staff.
“It is almost like something out of the movies,” Noble says. “The J. S. Woodsworth chair is named for the founder of the CCF, which was the forerunner of the NDP. He began his career in jail, speaking against the First World War and the Winnipeg strike. . . . They name a chair after him, and the endowment doesn’t come from Eli Lilly, it comes from workers and farmers across Canada.
“If there is anything that could be called a people’s chair, this is it. They select me. I’m an historian and a scholar, but I’ve been an activist my whole life. But then it is blocked by the corporate university.”
Unlike Healy, though, Noble has gotten the outspoken support of half-a-dozen academics at Simon Fraser. They circulated details, in e-mails around campus, that contradict the administration’s story. Ian Angus, an SFU professor of humanities, says it is hard to find any other explanation for these events other than Noble’s left-wing views. “Bear in mind that if the administration is about to violate your academic freedom, they do not send you a signed memo announcing the fact. The stated ‘reasons’ have to be something else,” Angus says.
Lawrin Armstrong, a history professor and member of the search committee that chose Noble, doesn’t yet have tenure. He says colleagues warned him not to speak out, but as a member of the search committee that originally selected Noble, he had no choice but to denounce his bosses for their “unseemly scramble for negative references.”
The administration said that Noble was not “collegial” because he refused permission for the background check, says Armstrong, a Marxist historian. ” ‘Collegial’ appears to mean not holding opinions that are likely to offend powerful interests in the university or potential corporate sponsors.”
To clear the air, the administration has launched an investigation. And the Canadian Association of University Teachers has started its own probe, expected to report by the end of the summer. Noble is also considering legal action to get SFU to follow its own hiring policy. He is confident that he will get the job in the end, although his supporters aren’t so sure.
His case marks a departure in the fight for academic freedom in Canada. With Clark, Olivieri and Healy, it is easy to see why university officials might fear losing funding: All three directly threatened the potential profits of corporate donors.
Noble is a historian, an expert in the history of technology, not a medical researcher. He criticizes corporations, but he is not likely to affect their bottom lines. In the past, humanities faculties have generally been free of the kind of pressures medical schools, for instance, have been coping with for years.
“We were amazed an appointment like this would provoke this kind of reaction,” Armstrong says. “You could make the argument that corporate interests are actually dictating the agenda in departments that have nothing directly to do with them at all.”
In all four cases — Clark, Olivieri, Healy, and Noble — the universities don’t admit that academic freedom has been violated. But the events appear to have had an impact: SFU has launched its inquiry; and in March, the University of Toronto moved to tighten ethical guidelines governing medical research, specifically citing the crumbling barrier between the university and corporations. The new rules will allow researchers to go public immediately if they have any concern about the safety of the drug.
Even Brzustowski, the staunch defender of closer corporate-university ties, says he hopes universities can learn from the Olivieri and Healy cases.
“These are public institutions,” Jim Turk says, “and they are very sensitive to criticism they are not acting in the public interest. In the end, the best weapon we have is the ability to turn the spotlight on these kinds of cases, and let Canadians know this is something they should be worried about.”
And Ann Clark says the duty to defend the public interest falls to academics like herself and her colleagues. “This is my job. I am a tenured faculty member and the purpose of tenure was to shield academics from external interests who have a vested interests in things not being said,” she says.
“I fault academia and government, for not speaking up, for not defending the interests of the people who are paying our salaries. We are the ones who are at fault, we are not doing the job we are paid to do, we are privileged to do, because we have been granted tenure.”
Copyright (C) 2001 Globe Interactive, a division of Bell Globemedia Publishing Inc.
Asim says
I have been on antipsychotic medication for a number of years the doctor says I have akathisa due to the medication
This is a jittering of the bones with constant aches and pains couples with heart problems
They will not stop the medication