risk

The misrepresentation of evidence

About a week ago I was involved in a heated twitter debate about this blog post. I felt, as I said on twitter and in my extensive comments about the blog, that it entirely misrepresented the evidence about Adverse Childhood Experiences by implying that because of risk multipliers within particular population groups, certain negative outcomes were almost inevitable for people with multiple ACEs. The author repeatedly asks rhetorical questions like “If 1 in 5 British adults said they were abused in childhood in the last CSEW (2017), why hasn’t our population literally collapsed under the weight of suicides, chronic illness, criminality and serious mental health issues?” Likewise, she asks how anyone can be successful after childhood abuse if the ACEs research is correct. I replied to explain that this simply isn’t what the data tells us or what risk multipliers mean, so the exceptions are expected rather than proof the finding is incorrect. For example the claim that a 1222% increase in the risk of suicide amongst people with 4 or more ACEs meant these people were doomed, in reality means that the odds increase from 1 in 10,000 to 1 in 92, meaning that 91 of every 92 people with 4+ ACEs do not die by suicide.

ACEs are a very useful population screening tool, and have provided incontrovertible evidence of the links between traumatic experiences in childhood and numerous social, psychological and medical outcomes that has been highly informative for those of us designing and delivering services. To me it seems like an example of how a simple piece of research can have a massive impact in the world that benefits hundreds of thousands of people. Yet that blog repeatedly implies ACEs are a harmful methodology that “targets” individuals and to is used to “pathologise and label children, arguing that those kids with the high ACE scores are destined for doom, drugs, prison, illness and early death”. It has been my experience that ACEs are used not to pathologise individuals, but to to highlight increased vulnerability, and to identify where there might be additional need for support. For example, I have used this data to argue for better mental health services for Looked After Children.

I felt that the repeated misrepresentation of the maths involved in interpreting risk multipliers undermined the entire message of the blog, to which I was otherwise sympathetic. (For the record, it is entirely appropriate to highlight bad practice in which it seems certain professionals are applying ACE scores to individuals inappropriately, and making people feel that their life chances are restricted or their parenting under scrutiny purely because of their childhood experiences of trauma). But unfortunately the author took my polite, professional rebuttal of elements of her blog as a personal attack on her – to the extent that she misgendered and blocked me on twitter, and refused to publish my response to her comments about my reply to her on the blog. That’s a shame, as the whole scientific method rests on us publishing our findings and observations, and then learning from the respectful challenge of our ideas by others with knowledge of the topic. But I guess we are all prone to defending opinions that fit with our personal experience, even if they don’t fit with the evidence.

Thinking about how uncomfortable it felt to see someone I considered to be a peer whose expertise I respected misrepresenting the evidence and being unwilling to correct their misconceptions when challenged, but instead trying to discredit or silence those making the challenge, it struck me that this was an example that highlighted a wider issue in the state of the world at the moment. Evidence is being constantly misrepresented all around us. Whether it is the President of the USA saying there is a migrant crisis to justify a wall (or any of the 7644 other false or misleading statements he has made in office) or the claims on the infamous big red bus that Brexit would give the NHS £350 million per week, or Yakult telling us their yoghurt drink is full of “science (not magic)” now that they can’t pretend live cultures are good for digestive health. There are false claims everywhere.

I stumbled into another example just before I started writing this blog, as I (foolishly) booked accommodation again through booking.com, despite the horrible experience I had last time I tried to use them (which remains unresolved despite the assurances from senior managers that they would reimburse all of my costs). The room was terrible*.

So I felt like I should be able to reflect my negative experience in my review. But oh no, Booking.com don’t let you do that. You see, despite seeing that properties appear to have scores out of ten on every page when booking, you can’t score the property out of ten. What you can do is to determine whether you give a smiley that ranges from unhappy to happy for each of their five ratings (which don’t, of course, include quality of sleep or feeling safe). So if you think the location was convenient, the property gets a score above five out of ten, no matter what other qualities mean you would never wish to sleep there again. But worse than that, the Booking.com website forces reviewers to give a minimum length of both positive and negative comments, but only displays the positive comments to potential bookers. So my “It was in a quiet, convenient location” gets shown to clients, but you have to work out how to hover in the section that brings up the review score, then click the score to bring up the averages, then click again to access the full reviews, and then shift them from being ranked by “recommended” to showing them in date order to actually get an objective picture. Then you suddenly see that at least half the guests had terrible experiences there. However, there is no regulator to cover brokers, and fire regulations and legal protections haven’t caught up with private residences being divided up and let out as pseudo-hotel rooms.

But just as Boris has faced no consequences for his bus claims (even though he stretched them further still after the ONS said he had misrepresented the truth), and Trump no consequences for his lies, and the consultants selling contracts worth hundreds of thousands of pounds of public funds to children’s social care departments proudly told me they didn’t care about evidencing their claims, so the world carries on with little more than a tut of disapproval towards people and businesses who intentionally mislead others. Maybe I’m in the minority to even care. But I do care. I feel like it is the responsibility of intelligent people and critical thinkers, people in positions of power, in the professions and particularly in the sciences, to ensure that we are genuinely led by the evidence, even if that makes the picture more complicated, or doesn’t confirm our pre-existing beliefs. To counteract this age of misinformation, we all need to be willing to play our part. That is why I have always placed such a focus on evaluations and research, and have developed my screening tools so slowly and thoroughly, despite the fact that potential customers probably don’t see this as necessary. I believe that as much as possible, we should be promoting the value of evidence, educating the public (including children) to be able to think critically and evaluate the evidence for claims, and stepping up to challenge misleading claims when we see them.

*I booked a room in a property in London which they have euphemistically called “Chancery Hub Rooms” to stay over whilst I delivered some training in Holburn. It wasn’t a hostel or a hotel, but just a small terraced house. This time it had keypad entry to the property and to the individual room, which is a system that I have used successfully several times in Cambridge. Unfortunately it didn’t work so well in London, as they changed the codes twice without informing me. Once this resulted in locking me out of the room on the night of my arrival (and meaning that the beeping on the door as I tried the various codes they sent me woke the lady in the neighbouring room, due to the total lack of sound insulation in the property) and then by locking me out of the property the following evening, when all my stuff was locked inside. It also had glass inserts above the room doors that meant your room lit up like Times Square when anyone turned the landing light on. I then discovered that the building (which I already recognised to be small, overcrowded and not complying with fire regulations) had walls like cardboard, when the couple in the next room had noisy sex, followed by noisy conversation and then a full blown argument that lasted from 3am to 4am – despite me eventually in desperation asking them quite loudly whether they could possibly save it for a time that wasn’t keeping everyone else in the building awake. Of course Booking.com didn’t see it as their problem, and the property management company just blamed the other guests for being inconsiderate.

Well-being check-ups

Two of my cats are geniuses. They have worked out how to open the cat flap inwards when it is set to only allow them to come in and not to go out. The other cat is either even more of a genius and has been able to hide his skills from me better, or isn’t motivated to go out into the cold at night, or isn’t as smart as his brothers*. I am yet to work it out. But either way a cat should not be able to “hack” an expensive cat flap fancy enough to recognise their microchips, so I phoned the maker, Sure Petcare. They said that it is very unusual for a cat to work this out – so unusual in fact that they hand make an adaptation kit for the few customers that find this an issue, and would send one out, which they duly did. If that doesn’t work they will refund us, and we can buy a design with two point locking instead.

What was interesting was the figures they let slip in the telephone call. According to the member of staff I spoke to, it seems that five percent of cats can open their catflap when it is on the setting that is supposed to allow inward travel only. That is, if you have a smart cat who wants to go out, then it doesn’t work. When looking at their customer experience, one in twenty of their cat flaps doesn’t fulfil the functions they claim for it and has to be returned or replaced. Yet somehow they have decided that it isn’t worth modifying the design, despite this failure rate. So they are reliant on cats not working it out, and/or customers not complaining, and/or the cost of making and sending out the modifications for this smaller number of cat flaps being cheaper than the change to the manufacturing costs involved in solving the problem.

They aren’t alone in that. The Hotpoint/Indesit fridge that caused the Grenfell tower fire was a model known to have problems with blowing fuses, temperature control and noise at night. Other products by the same manufacturer, such as a particular model of tumble dryer, had been known to cause fires. But neither had been subject to a recall until after the tragedy at Grenfell. Likewise many models of cars have been found to have various safety problems, and the manufacturer seems to weigh up the adverse impact of the negative publicity and the cost of the preventative work, replacements or repairs and to compare this to the cost implications of not acting – it has only been since the larger financial impact of customers taking up legal compensation cases after deaths and serious injuries, and increased government fines for not acting on safety issues that the balance has tipped towards preventative action.

My car was recalled by the manufacturer a couple of months ago because of a fault with the ABS, which can overheat and fail in an emergency situation, so I took it in last week to be checked and modified. The modification was completed without event, but the VW dealership also provided a “free service check” of the rest of the vehicle. This identified two “red” repairs they felt were urgent or affected safety, and one “amber” issue with the brakes, and they suggested I should have all three repaired before leaving, at a cost of nearly £700. What they might not have known is that the car had passed its MOT with no recommendations for work less than three weeks previously, so I took it back to my trusted local garage for their opinion on this “urgent” work. The mechanic explained that the items identified were not necessary, let alone urgent (particularly on a nine year old, 100,000-miles-on-the-odometer car destined for the diesel scrappage scheme within the next year or two).

I’m not a car person really, so I mention it only because it seemed to me that VW (or that particular dealership) had decided to offset the cost of the recall to check the ABS, by identifying other potential sources of work they could undertake and presenting minor issues in a way that appeared more serious or urgent than they really were. In that way, garages are pretty shameless about creating work for themselves, and from the start they build in customer expectations of maintenance and additional expenses. We accept the idea that safe operation of vehicles requires periodic checks and repairs, and we need to take them in for regular servicing because certain parts have a limited lifespan, and don’t see that as indicative of the original product being defective.

You would think this is even more true in healthcare, given that so many conditions can be prevented or treated simply if identified very early, saving pain and trauma for the individual whilst also saving cash to the public purse. It isn’t impossible to deliver, as this type of model is used in dentistry – we attend for periodic preventive checks and expect to need maintenance from time to time. Likewise we expect to need regular eye tests and to update our glasses. And we get letters reminding us to come for flu jabs or smear tests from the GP. But it isn’t applied to our general health and wellbeing. In fact my health had deteriorated quite significantly before I was assertive about requesting the tests that showed I was anemic, severely vitamin D deficient, had blood pressure high enough to be risky and an abnormal ECG. And the only context where there are screening and preventative measures for mental health that I can think of are during pregnancy and the occupational health checks when applying for a new job. However, there is a massive incidence of mental health problems and it has huge impact on people’s lives, the lives of those around them, and their ability to engage in education and employment, with knock on effects on physical health, social engagement, work, relationships and parenting.

When thinking about mental health and therapeutic interventions, we could probably learn from the maintenance model of dentists (or the regular intervals of car servicing) that keep an overview of how things are going, give preventive advice and identify the need for more in depth work. It would also take away the stigma of talking about mental health if it was something universally considered at regular intervals. Of course it will never happen, at least not under this government which is trying to strip away essential health and social care services, increase the wealth gap and the vulnerability of socially excluded groups, and blame individuals for the way they respond to experiences outside of their control. But it is nice to think now and again about what things could be like if we no longer worked within the constraints of austerity. And I’d like to have an annual well-being check up where someone with a mental health qualification starts by asking “so how are you feeling at the moment?” and actually cares about the answer.

 

*I’m not judging, I love all three of them equally.

Falling through the cracks – the current state of NHS mental health services

Recently I spent sixteen hours trying to get an acute mental health assessment for a someone. The details of the case are not what matter here, but I want to talk about what I learnt from the process, and to do that I’ll need to give some context. It is necessarily vague and some information has also been changed to protect confidentiality.

However, as a pen picture it is fair to say that there was a combination of a severe deterioration in mental health with risk to others (the person had bizarre beliefs that led them to want to injure/kill people within particular demographics). The person did not want any mental health input, but I felt that the risk issues were so acute that it was necessary to override the lack of consent and request that an urgent mental health act assessment be undertaken. The other members of the household were keen for this to happen, as were various professionals who were already involved from the health, social care and criminal justice sectors. The person was open to a locality mental health service, but after the initial assessment identified various needs nobody had been allocated to undertake the work, so although it was an open case there had been no service for several months.

So, I rang the local service to ask for a psychiatric assessment. It wasn’t an area where I have worked before or a service that I had any prior experience with so I rang the number on their website. I explained I felt that there was acute risk coupled with obvious decline in mental health, but a lack of consent to treatment, so I enquired what kind of urgent services could be triggered, suggesting that the person involved would be difficult to approach and it would almost certainly be necessary to undertake a mental health act assessment and an admission against the person’s will might be necessary to safeguard others. And that is where I hit a brick wall.

The local service told me they were not commissioned to have a crisis service, and that unless the person involved had self-harmed they did not meet the urgent criteria. No amount of risk to others, or deterioration in mental health would qualify for their service, unless there was self-harm, or the person presented at A&E themselves, or we waited the timescales of their routine service (which had no capacity to allocate a worker). Pointing out the NICE guidance required a same-day response didn’t shift their position. Highlighting the risk to others or the individual likewise seemed to go unheard. The Approved Mental Health Professionals team said that the person met their criteria, but they could not get involved unless there was a psychiatrist from the locality team who had seen the person and would identify the bed if it was necessary to use a section. The psychiatrists said they were not resourced to go out and see people, and that they were not prepared to put themselves at risk by attending a person who presented a risk to others, even though I had arranged for the police to be present. They said the only way they would see the person was if the police used section 136 to bring them to the hospital as a place of safety, where they could then provide an assessment. They suggested that we call 999 to ask for ambulance and police assistance. The ambulance and police said they were not there to provide transport, and if the person was calm and inside the house, they did not present an imminent threat that required removing them using section 136.

Deadlock.

The next day I phoned the local mental health team again and asked to speak to someone senior to raise my concerns about the case. The duty clinician called me back several hours later. I got asked “what do you expect us to do on a Friday afternoon?” and “why is this our problem?” and then got talked over loudly again and again as I tried to explain the issues with risk and mental health. I asked politely four times for the person to stop talking over me, without effect and then asked her name. She refused to tell me and ultimately hung up on me. Her service wouldn’t tell me who I had spoken to, or give me any information about the complaints procedure beyond telling me to write a letter to their postal address. I asked to speak to a service manager. Unavailable. To a psychiatrist. Unavailable. I asked for someone to call me back. at 4.45 I got a return call with the same content as the previous conversations. No crisis service. Doesn’t meet their urgent criteria. A&E, the police bringing in under a 136 or nothing. I wrote a report giving all of my concerns to the whole network in writing.

In supervision I talked about my anxiety about a serious incident, and my fear that nothing would be done, and everyone would pass the buck. I was supported that my concerns were legitimate, and made the decision to try to take it up the chain of command. I called the department again. Then I called the directors of the trust involved, and the complaints department. I made calls all morning with no response, having already had no response for over a fortnight to concerns I felt were so acute they needed a same day response. So I called the CQC.

The CQC were very helpful, and made me feel that it was the right place to raise my concerns. I feel that the systemic issues will eventually be addressed because of the CQC having sufficient power to influence commissioning decisions, but that doesn’t help in the timescale of the individual. Likewise someone near the top of the trust concerned did get back to me the next day, and want to learn from the process (perhaps motivated by awareness of the CQC being involved). Hopefully we’ll look at the pathway, and address the various issues that my experience flagged up*. But again, that’s fixing the stable door after the horse has bolted. At the individual level, the outcome was disappointing. The person is moving to a different area within the next few weeks, and the service have decided that means that they don’t have to do anything, whilst the new area will only act if concerns are raised once the person arrives.

So the story doesn’t have an ending yet. There wasn’t a happily ever after, because the service I felt was required within a matter of hours hasn’t been provided, despite several weeks having passed. However, there hasn’t been a serious incident either. I’m keeping my fingers crossed the former happens before the latter.

But it was a pretty weird experience for me. Normally, if I raise a concern people take that pretty seriously. I’m a fairly senior clinician with the titles Dr and Consultant by my signature. I’ve been an expert witness in 200+ court cases. And I’ve had 20 years of experience against which to judge risk and after 16 years in the NHS I also think I have realistic expectations of services. I’ve never made a complaint about an NHS service before, and I hope I never have to again, but I didn’t feel like I had any other option. I was genuinely horrified to see defensive service specifications being used to deny a person with clear acute mental health needs a service. I felt like my concerns were ignored and dismissed because they were inconvenient and didn’t fit within existing pathways.

I’m not sure that my involvement did any good at all for the person in the end, despite spending hours and hours on the phone and writing emails and letters. But it made me wonder, what if I wasn’t there? What if there wasn’t someone with a title and qualifications and NICE guidelines to cite to try and agitate for the services to do the right thing? What if a family member or friend of the individual rather than a professional was trying to express their concerns? Why are the barriers so high when it comes to accessing mental health services? Why have services got specifications that exclude people in serious need? Why are the processes to raise concerns so opaque and so slow? Why don’t services join up better? Why are services always reactive and so rarely proactive? Are age, gender, race or other demographic characteristics a barrier to accessing treatment? Why are we still so far from parity between mental and physical health services? Why does mental health still not have the kind of services there are for acute physical health needs? Most of all, why does common sense and compassion get lost in pointless bureaucracy when it comes to referral pathways and criteria?

I used to be so proud to be part of the NHS. Now I wonder about what it has become. Is this just what is left after decades of cuts and reorganisations, or was I always a roll of the dice away from hitting a dead end?

*this was never followed up, so in retrospect it seems it was just platitudes to shut me up

Thinking about vulnerability and risk

Sometimes you pull on the littlest of threads and the biggest of issues appear at the other end.

Today I have been training in quite a remote location in the Welsh borders. It is the first time in quite some time that I’ve been in a location with no mobile signal. And no mobile signal meant no satnav to find my location last night, and no means to let my husband know I had arrived. I soon found there was no working phone box, and given the late hour there was nobody around to ask directions. And all of a sudden I realised that I was lost, alone and that nobody knew where I was! For those few minutes before I found the hotel, I realised how much I have grown to rely on technology to feel safe and oriented in my day-to-day life. And then I wondered if I felt less fearless before those technologies were so ubiquitous, or whether it is just the absence of a crutch I have grown to rely on that made me feel more vulnerable. After all, what was the real risk?

I started to think about about how we are trained to over emphasise certain sorts of risk (like stranger-danger, or the risk of immigrants on unemployment rates), and to under-recognise others (like the risks to children from exposure to domestic violence, or the risks that so many families face from poverty and discrimination). It seems that the media trains us to be most afraid of the things we have least control over. A cynic might think they want us to have an external locus of control and a certain degree about learnt helplessness when it comes to social issues. Whatever the motivation, the result is that many people go about their lives with little awareness of the risks that I see as the most important in society today – how vulnerable many children and adults are to abuse and exploitation, how maltreatment is normative in certain families and communities, and how interpersonal violence, trauma and abuse can change the path of people’s lives.

One example of risk and vulnerability that has been prominent in the media recently is how the press has turned once again to discrediting victims of abuse who speak up. This has taken several strands. First the media narrative has changed from “survivors of child abuse” to “alleged survivors of child abuse”, sowing the seed of doubt about every person who makes a disclosure. Second politicians are telling their colleagues to withdraw allegations due to loyalty to their party, and trying to shame the brave few who spoke up and asked for multiple disclosures and allegations to be investigated into apologising for maligning a powerful public figure. And third we are repeatedly hearing that those with allegations against them which are dropped by the police or CPS have been “proven innocent” or that victims have “lied” or “fabricated” rather than the more accurate truth of the matter, in which there is insufficient evidence to have a high enough chance of successful prosecution to merit public funds to proceed. The climate of being willing to look into abuse allegations against the rich and powerful, which gained such momentum from the public disgust about how Jimmy Savile got away with such extensive crimes for so long, has turned once again into a climate in which victims feel that the authorities are biased towards powerful and they are not going to be believed. This blog is an eloquent example of that.

Whilst I firmly believe in the principle of innocent until proven guilty, and the need for exceptional reasons to name someone against whom allegations have been made before the case has sufficient evidence to come to trial, we are dealing with a system far more weighted towards false negatives than false positives. Let us not forget that as many as 1 in 5 children are sexually abused, and yet only 15% are able to disclose in a way that leads to a police investigation. That’s the scandal here, not the impact on the reputation of a dead politician.

We need to remember that the victims of abuse are human beings like us who have been failed by society. If all politicians see is demographics and price tags, or characters and plots in which the goody is the one who becomes rich and powerful, then they don’t treat people like people. Recognising human beings and their ability to suffer is necessary to form policy, to offer justice and to be objective in investigations. In fact, that recognition of our common humanity and how people are shaped by their experiences makes you more able to consider that the perpetrators who are too often written off as incurable and evil are mostly people who have been victims themselves and never had the positive learning experiences children need to develop healthily in their own lives.

I think tackling child maltreatment is the primary social problem in the world today. To address this problem we need a multifaceted approach. I believe that if we can prevent child abuse and help people to have secure attachment relationships they will learn to be more resilient, empathic and socially skilled. In time this will have immeasurable positive impact on society. It will reduce crime, addiction, conflict, mental health problems, and even reduce the incidence and severity of many major physical health problems such as heart disease, diabetes and cancer. And interventions to help reduce maltreatment, improve attachment relationships and support children to make an optimal recovery from abuse or poor care are highly cost effective. Every pound spent in addressing childhood adversity through evidence-based interventions is repaid tenfold to the state in savings before adulthood (for example, we know that mental health interventions in childhood can save £83 more per pound spent where issues are prevented or treated in childhood rather than remaining into adulthood). But it doesn’t stop there. These changes continue to make ripples that save costs in health, social care, criminal justice, employment, benefit, and tax spheres for the rest of the person’s lifetime, and then for their partners, children and future generations.

We just need to stop blaming the vulnerable, and imagining risks where they don’t exist, and start trying to solve the systemic problems that make them vulnerable in the first place.