experience

Diagnosis vs difference

I read a recent editorial on LinkedIn about the way that the diagnostic criteria for neurodiversity require “impairment” in functioning for a person to reach the diagnostic threshold. It was an interesting topic for a paper, and raised a set of broader interlinked questions in my mind about whether diagnosis is a recognition of difference-from-the-norm in the way some people’s brain or body functions, or whether it is about recognising something that is harmful (like a disease), or whether it causes distress or impairment / difficulties in functioning (like a disability or mental health condition). In particular it is interesting to think about how neurodiversity fits into that framework, compared to mental health conditions or physical health conditions. It opens questions about the purpose of diagnosis and whether that is about recognition of difference and understanding ourselves, or for gatekeeping access to certain types of support. It also raises questions about terminology – whether we acknowledge that many patterns of need or difference fall on a spectrum, and what we call a disorder or condition.

As it stands, in the current diagnostic rules (DSM 5 or ICD 11) each diagnosis has a minimum set of symptoms described. For example, in the DSM for a diagnosis of autism the individual must have “persistent deficits in social communication and social interaction across multiple contexts” and two or more areas in which they show “restricted, repetitive patterns of behavior, interests, or activities”. These difficulties must have emerged early in development, and not be “better explained by intellectual disability or global developmental delay”. However, to be diagnosed, the person doesn’t just need to have the neurotype of autism or ADHD but to struggle significantly with work, life, mental health or relationships because of it. Symptoms must cause “clinically significant impairment in social, occupational, or other important areas of current functioning”.

On first glance it seems a pretty clear description that could be consistently applied, but the more I’ve thought about it the more problems I see. First of all, the impairment criteria mean that people could waver in and out of the diagnostic category according to how well they are doing in their lives at that point, how well their environment and network support their needs, or their developmental stage. For example, a person could be autistic as a child, but then find a lifestyle, job, community or other niche in which they are happy and successful, and therefore fall below the diagnostic threshold – until a change or stressful life event means that they become distressed, when they would be diagnosable once again. Or they could have very subtle challenges that would not meet the criteria in primary school, but increasingly struggle during secondary school and meet the criteria for diagnosis, but then escape the sensory overload and/or social demands of that setting and no longer meet the criteria again.

That doesn’t make much sense given that autism, ADHD and other forms of neurodiversity are currently conceptualised as lifelong, inate differences in how people process information and interact with the world, rather than conditions that come and go. Neurodiversity isn’t a disease that temporarily disrupts a person’s normal functioning and can be treated to return them to normal. Neurodiversity is normal for that person; it is intrinsic to the way they experience and interact with the world for the whole of their lifespan. A neurodiverse brain is set up with a much wider focus of attention, or more attention to detail, or more propensity for sensory overload than a neurotypical one. A person doesn’t stop being autistic or having ADHD or a learning disability even if they learn strategies to fit in better with other people’s expectations or cope better cope at school or in the workplace any more than a person who is colourblind stops being colourblind if someone provides glasses that increase the red-green contrast.

For that reason, neurodiversity doesn’t fit into the medical model of diagnosis in the same way as mental health problems that may come and go, where a diagnosis may be helpful during the period when a person is experiencing depression or anxiety or psychosis, but may cease to be relevant at a later point – as for many people the symptoms will entirely resolve (spontaneously or with treatment) and no longer impact them. In the case of a mental health condition it wouldn’t be relevant to continue to use the diagnostic label after their symptoms resolve, as the individual may return to population-normative ways of experiencing the world. If we retained the diagnosis it would lose all meaning, as about half the population would end up with it, but most of those would have no symptoms that differentiate them from those without the diagnosis.

I also wondered how the idea of impairment fits with masking. In some cases a diagnosis could be withheld from a person who subjectively feels like they are struggling enormously if they were able to mask their difficulties enough for them to not impair their ability to function in their workplace or relationships during the assessment period. Or could it be considered a signficant impairment that it is exhausting to mask difficulties? Or that the effort of masking or coping with sensory overload all day at school or work means the person then struggles to function at home, withdrawing or becoming dysregulated in a way that might on first inspection suggest the difficulty is located within the home.

However, despite all the reservations I have raised, it is possible to think about diagnosis as only being meaningful when it applies to functioning, and a label for a degree of symptoms that is outside of the normative range. Many conditions are not binary variables that are either present or absent. Illness is quite often a matter of degree rather than the presence or absence of a condition. For example, a person’s glucose metabolism can indicate that they are becoming insulin resistant, but it is only above a certain threshold that the diagnostic label of diabetes would be applied, and certain treatments would be considered. Likewise our blood pressure or weight can be in the healthy range, or below or above that, but a diagnosis is only given if it is sufficiently high to cause significant health risks. There are numerous variables where we can be tested to see whether we fall into the typical range, or whether further investigation or treatment would be benficial – from our levels of white and red blood cells, iron, vitamin D, cholesterol, hormones, to the functioning of our liver and kidneys, markers of inflammation, infection or tumours. The threshold at which doctors diagnose conditions is typically the point at which symptoms start interfering with functioning and/or the pattern identified is known to cause harm, risk or distress to the individual.

Sometimes medics have to determine appropriate treatment without a diagnostic test being available, or where there is not a direct relationship between symptoms and the scores from blood tests or scans. For example, calcific tendonitis can affect the shoulder joint causing pain, reduced movement or even functional paralysis. However, sometimes people with scans that show a lot of calcification don’t report any symptoms, and sometimes people with very little visible in the scans have a lot of functional impairment. Physiotherapy and/or steroid injections seem equally effective at treating symptoms regardless of what shows in the scans. So treatment is typically determined by impairment alone. Likewise, a woman might have lower levels of oestrogen during or after menopause, and this might be associated with certain symptoms like brain fog, anxiety, hot sweats or disrupted sleep. But there is a degree of variation in what level of oestrogen the woman’s body is used to, and the effect she will experience from it dropping that means some women glide though menopause naturally without much ill-effect, whilst others (myself included) would find it entirely disabling without HRT – and this doesn’t map directly onto the level of oestrogen detected in blood tests. For this reason, it is the pattern of symptoms rather than the blood test results that should guide treatment.

Likewise, depression is something that ocurs along a spectrum from very mild to totally disabling symptoms. As is anxiety. There are even levels of the unusual beliefs or sensory experiences that occur in psychosis that would be considered normative – such as thinking you’ve seen a person who has recently died, hearing an internal voice giving you advice, or having strange or intrusive thoughts that you are able to quickly dismiss. In the same way, arguably we are all neurodiverse to some degree – we each have different patterns of cognitive strengths and weaknesses, different ways of processing sensory information, and subjective experiences of the world. But some of us are able to function in the world more successfully than others, with some people constantly feeling discomfort, distress or having to put in huge amounts of effort to do things that others find effortless. It therefore seems logical that it is the level of impairment rather than the neurotype that determines whether a diagnostic label is appropriate – even though this brings both a level of subjectivity to the judgement of whether the label is appropriate and an acknowlegement that the degree of impairment reflects not just the qualities of the individual, but also the qualities of the environment and network that they function within.

It might be that like height or hair colour, sexuality or personality traits, our strengths and weaknesses, there are ways in which we all vary that are not “conditions” that need to be diagnosed but simply differences between individuals. If we conceptualise neurodiversity as this kind of difference, then recognising it can still be a helpful way to understand ourselves, and how we differ from others. It can also help us find our tribe – the people that share our struggles or our interests and talents.

However, all this theoretical debate misses the elephant in the room of how widening the diagnostic range helps people with more subtle impairment recognise their neurotype, at the cost of negating the experience of those with more profound impairment who had historically been able to convey their needs with a label that now gives most people a false impression of much subtler difficulties. What terminology do parents or carers of people with the “autism” described by Kanner (or at the more impaired end of the spectrum described by Wing and Gould) use to describe their pattern of needs? These individuals may be non-verbal, with significant developmental delay, very atypical ways of interacting with others, and obvious stims/stereotypies that instantly mark them out as different to members of the public. This group includes people with autism who are profoundly disabled to the point that they will need signficant financial and practical support across their lifespan – attending special schools, not being able to communicate their needs except through their behaviour, unable to reach independent living, or have the capacity to make decisions about their lives. Having an appropriate diagnostic label functions as a gatekeeper to accessing this kind of financial and practical support.

The problem being that whilst this group have used the label “autism” to describe their needs for eight decades, this is not the same population as now use the word “autism” to describe themselves on social media, to friends or in the workplace. As the diagnostic threshold has lowered to recognise more subtle impairments the label of autism has been claimed by many quite “high functioning” people to self-describe their struggles in a neurotypical world, and – because this group is more articulate and able to speak for themselves – they have come to dominate the discourse about autism, overshadowing the smaller numbers of people with more profound disabilities who had previously been described by this label. The larger number of people who are now included in the same diagnostic category but were previously given the diagnosis of Asperger Syndrome or High Functioning Autism, or seen as having difficulties that were below the diagnostic threshold, typically don’t have the moderate to profound learning disabilities, or need for support in their daily living skills as those who were diagnosed with Autism a few decades earlier. This population group might be independent, articulate, intellectually able, employed, and/or involved in interpersonal relationships including friendships and romantic/intimate relationships. Whilst it is evident that they do find some elements of life harder than neurotypical people, and it is a very helpful and affirming label that lets many people understand why they have felt different to the norm and have struggled with elements of their life, the level of support they require is not equivalent – despite the diagnosis on paper now being the same. A parallel process of widening the diagnosis has happened with ADHD and other elements of neurodiversity, to the point that 10-15% of people now identify with at least one element of neurodiversity, when historically only 1-2% of people were given these diagnostic labels.

This mismatch has therefore become the grain of truth that underlies some very toxic discussions about the growing rate of diagnosis, and the expanding numbers of people claiming disability benefits and adjustments or support within education and the workplace. With larger, more articulate and more powerful groups of voices advocating for the needs of the able end of the spectrum (who often object to any implication of there being a spectrum or such a thing as high vs low functioning or find such labels pejorative), it is hard for the voices of those representing more disabled individuals to be heard. I can understand that we need to respect the voices of lived experience about what terminology they are comfortable with. But some people don’t have voices in this conversation. And it wouldn’t be honest or fair to pretend that the needs of everyone with autism are equal.

The changing use of the diagnostic label doesn’t necessarily relate to the type or degree of support people require, and therefore it may no longer be able to function as a gatekeeper of services. That might still have to rely on an understanding of impairment – the areas in which we are struggling or require more support than the rest of the population. We can’t support everyone equally, that just isn’t viable. We also can’t allow resource rationing to lead the decisions about terminology or diagnosis. But it will have to be consideration of impairment that helps systems to differentiate what levels of support are appropriate – even if that involves subjective judgements, of functional states that are impacted by the environment, and will need to be regularly reviewed over time. Because without us evolving the right language to accurately reflect levels of need, the most disadvantaged will struggle to get their needs met at all – with tragic consequences for them, their caregivers, and the public purse. And, as Mahatma Gandhi is believed to have said, “the true measure of any society can be found in how it treats its most vulnerable members.”

Give and Take

I’ve run the clinpsy forum for 18 years, and before that I spent a couple of years as a moderator on a precursor forum. I’ve compiled and/or written about 200 wiki posts that have been viewed millions of times between them. Some individual posts have had over 100,000 page views – the most popular being a giant list of interview questions I compiled, a post about transference and counter transference, and one about keeping a reflective journal and one I wrote on clinical vignettes, followed by my post about formulation, and one about clinical interviews. There are also popular posts such as one about what to do with a low degree mark, a more general post on reflective practice, one on supervision and posts about preparing for assistant psychologist and IAPT interviews. The site peaked at about a million page views per month, but has slowed a little as technology has moved away from forums towards WhatsApp groups, and various people have tried to cultivate this audience via social media (often selling products and/or services).

I’ve never really seen running the forum as potential source of income. In fact, it has been a huge drain on my resources – I spent an hour a day for a decade building the content and community, and I’ve paid the server fees, programming, design and other costs out of my own pocket (subsidised at times by a trickle of advertising income). Even now I have to check and activate the new members, respond to emails and PMs at least 2-3 times per week. On the other hand, I have saved a little bit of money on advertising, I’ve been able to promote my own book without cost (and various courses and jobs offered by people that I know). It has given me reach that I might not have had otherwise (I’ve got about 10,000 followers on Twitter, over 5,000 on LinkedIn and this blog has had over 100,000 reads). And I’ve saved a little time in accessing information or publications. So whilst it has cost me about two years of full-time work, and about £5000 overall (plus the cost of the clinpsy URLs and the time spent on social media, but those aren’t constrained to this purpose or audience), I don’t feel like the time has been wasted.

Maybe that is because I don’t do it for the money. I’ve mainly seen it as a way to undermine the added value of nepotistic networks, where information was kept amongst a privileged few who had access to CPs. I wanted to democratise the profession, by puting that information into the public domain, and allowing equal access to sources of support for people from all different demographics. I quite intentionally undercut those who marketed to this group, by offering forum membership and access to various activities for free, and by asking only for a charitable donation for the various webinars, training days, professional development workshops and reviews of applications that I offered (with the level of donation being recommended, but the option being available to pay less or even nothing for people of low means or groups who have been traditionally excluded from the profession). That has also led me to raise thousands of pounds for charities like UNHCR, Magic Breakfasts, food banks, refugee support, and various other causes from replacing the broken electronic whiteboards at a local primary school to dementia care, to educating girls in Africa.

I also get the intangible reward of the people who thank me for the impact that the forum and/or my input has had on their lives. Their notes that say that my feedback made all the difference to them gaining a job or a place on training. Or that my workshop helped them convey their competencies more confidently at interview, or find the next step in their career. It means I am quite widely known in the profession, which builds trust and reputation. And, perhaps most importantly, there are people who have met me through the forum have later become friends, employees and colleagues.

At a few points, people have expressed interest in buying the forum off me. Sometimes that has been an easy no – like when the offer came from the owner of the profit-making travel agency that masqueraded as a charity giving people psychology experience in Sri Lanka and other developing nations. But there have been more benign offers, and now I am so preoccupied with my business, and the other moderators who helped me run the site have mainly fallen away, I do feel like the time and resources I have available to pour into it is limited, and there might be advantages in bringing new energy to the community. So I am torn between a plan to reinvigorate the community, and the idea of handing it over to a new owner.

I also wonder about the balance of give and take, and whether passing on ownership would relieve me of an undue sense of responsibility. After all, there is only one of me, and over 9000 members* and I’m also spinning quite a lot of other plates – I’m Mum of teenagers doing their GCSEs, we are in the midst of building work, and I run my own business which could use my time five times over. There is also something strange about running a forum that feels like the service I provide is taken for granted, assumed to be financed by a professional body, or is treated like public property. Sometimes people have quite unrealistic expectations – demanding immediate responses to messages, sending grumpy emails if their account is not activated right away, breaking the minimal simple rules, or complaining about moderation. People post adverts or self-promoting content without permission or payment (even though our charges are minimal and support the costs of providing the forum). It is as if they believe it is their right to post on the forum to get free promotion for their blog/website/book/course or whatever.

It sometimes feels like a lot of people put very little in but expect to take out as much as they want – asking questions but never contributing to any other discussions, or signing up to request a form review or to apply for a place on a low-cost event without ever contributing to the forum or being part of the community. I like to raise money for the charities and to give people access to information, but each form review takes me 30-40 minutes, and I currently have a queue of 47 requests – which will take about a week’s working time out of my weekends and evenings over the next month. I’d be much better off financially if I donated £1000 to the charities myself and spent the time on income generating work!

But the alternative is to give those selling services to aspiring psychologists an open market to exploit, or for me to have a paid tier of forum membership or to sell products and services, which doesn’t sit right with me, as it reinforces the privilege filter that has always biased our profession towards middle class, able-bodied, white women. Given I don’t want a website and forum full of intrusive advertising, and I haven’t got money to throw at it, the alternative is running the forum on a shoestring – which is fine when we have lots of volunteers contributing to keep the discussion lively and assist with the admin, but more difficult the more of the work I need to shoulder alone.

There are echoes of the same theme in decisions I need to make about my business. As we scale I need to decide whether we continue to bootstrap our growth, or we borrow or seek investment to grow faster (making more impact for more children, but with the cost of being pulled towards earning enough to repay a loan, or delivering a financial return for investors). I need to weigh up the value of locking in the mission to the company structure, versus optimising the business for investment. My gut instinct is to lock in our values with a pledge to prioritise impact, and to donate a percentage of profit above a certain threshold to a charitable foundation that can offer access to the tools to those that can’t otherwise afford them. But it might be that keeping a traditional company structure and taking on investment allows us to reach more children and make more impact to a wider population than we would by being too rigid and narrowing the pool of investors that would be interested.

So I need to think more about how I value and prioritise my time. I’m not sure I owe anything more to aspiring clinical psychologists than any other member of the profession does. So I wonder why I felt obligated to take up this mantle, and continue to stubbornly carry it? And why am I willing to sacrifice my leisure time, or the time I get to spend with my family or on my business, to do things with minimal personal benefit? Whilst I love that I live my values – and the way they permeate almost everything that I do – they do have costs, and I think I probably need to prioritise myself and my family a bit more. I’m not sure I’ll look back on my deathbed and think “I wish I sank more time into that website”, or “if only I had offered more professional development support to aspiring psychologists”, or “I should have achieved more with my business” rather than “I should have spent more time with the people I loved, given more focus to my health and wellbeing, and seen more of the beauty of the world”.

*I haven’t pruned off the dormant accounts for a while, so once I do this may well return to the approx 8000 figure where it has stabilised for the last decade.

Hindsight and reflection

When I watched The Usual Suspects, the twist at the end made me immediately re-watch the whole film. The extra bit of knowledge meant the same information from the earlier plot had entirely different meaning. The same thing happens when you realise someone has lied to you, or manipulated you for some secondary gain – you suddenly need to reappraise all the prior interactions you have had in light of this new insight. It is inevitable as we go through life that we learn additional information that helps us understand things in more sophisticated ways. Just as we learn that our parents are flawed human beings, rather than always right and almost omnipotent, a lot of relationships transpire to be less perfect when the first thrill of connection wears off. It can be quite a challenging process to understand why you were fooled, what you should have noticed, and how you could have avoided the bad feelings that come with realising all was not as it seemed.

In one chapter of my book I talk about the poem “Holes, An Autobiography in five short chapters” by Portia Nelson. It is a nice summary of the patterns we can all fall into, and how it is only reflection and insight that lets us climb out, and eventually learn to avoid falling into similar holes in the future. I found it really helpful realising that there were certain “holes” that I recurrently fall into. In particular, I was susceptible to one when others seem to need my help and support, but keep on taking without recognition of the value of that help or any cost it has for me, until I feel exploited. An early example was a student who volunteered when I was an AP, who I supported to apply for similar posts and to get onto clinical training, before becoming aware she had presented some of my work as her own, and named me as a reference for a job she had been fired from (when I wasn’t her supervisor and didn’t work there, in the expectation I’d say only positive things).

Related to this, perhaps, is my sense of myself never living up to the high expectations I set myself. It means I often assume I’ve done something wrong, until I find out that the other person is getting me muddled up with someone else, or has put the wrong time for the meeting in their diary. I feel acutely guilty if I take too long to write up the notes from a consultation, even if I’ve had time off sick or other crises to deal with. And I always first reflect on my part if there has been a misunderstanding (eg if the builder is asking for much more money than the written quote, and implies that we agreed additional costs for changes to the design – even though I know I would have kept track of that). It also made for very difficult dynamics with an AP who appeared really hard working and humble until I wrote them a reference for training, then started being increasingly critical and undermining, blaming me for their lack of progress in any of the tasks they were employed to do until I felt quite upset. It was only when I shared my feelings with trusted advisors and peers that I was able to recognise that the problem wasn’t with me. I then started to recognise I’d been gaslighted, and that if someone else makes me feel bad, I have no obligation to kept bending around them until they are satisfied.

Sometimes it isn’t new information about what happened or the other person’s motivation, but a new perspective or frame of reference that shows past experiences in a new light. I’ve reflected in past blogs about how what seemed like normal teenage boy behaviours, that were a socially acceptable way for them to show their interest in me (and portrayed in my peer group as something I should be flattered by) were actually quite inappropriate – unwanted, overly persistent and at times clearly non-consensual. Likewise, I learnt the term “stealthing” meant the guy at university who knew my consent was contingent on condom use, and made a show of using one but transpired not have to used it after the fact, was not just a selfish scumbag (as I thought at the time), but had committed a form of rape. The new insight gave a different perspective on past experiences that helped to bolster my trust in my own feelings and ethical judgements. And helped make me even more determined that I wouldn’t be complicit with these patterns again even if it means I sometimes have to risk looking emotional or being seen as a “difficult woman” when I assert my position.

From these relatively small examples in my own life, I also gained a new respect for the task of reprocessing past experiences for those who have lived through abuse and trauma. If a tiny piece of new information, or a new way of looking at things can throw my certainty about my past experiences into doubt and demand a high emotional load to process, how much more demanding it must be for those whose lives were impacted by much more serious or sustained experiences such as childhood sexual abuse, grooming, or coercive control in a relationship. It will take time and effort to reprocess their own story when they are no longer in the sway of the person who is normalising the abuse. But often we are also fighting against social norms (eg many women are socialised into accepting “grey rape” as being not the real thing, if they didn’t say a clear “no”, or were intoxicated, or went back to his place/invited him home/consented to kissing or prior sexual activity). The meaning of experience is very much in the eye of the beholder, and shaped by cultural narratives. And there are forms of cultural oppression that change our whole sense of self, such as messages from family or religious/cultural groups that lead to people not feeling able to show their authentic sexuality or gender identity (the latter issue somehow being co-opted by both TERFS and right-wing figures who see trans people as an easy target for their “culture wars”). Finding a safe place and social network in which to be your authentic self is so critical for our happiness. Even feeling okay about your body and appearance is a challenge for many people, and finding body positive role models and reaching acceptance of ourselves that isn’t conditional on weight-loss or conforming to popular beauty standards can be life-changing.

A similar shift of needing to reappraise the story by which I understand my experiences happened to me recently in terms of my own body and health. After some quite unpleasant side effects to coming off HRT, including excessive bleeding to the extent I ended up in A&E, I had an ultrasound that suggested I have adenomyosis – a thickening of the endometrium, where lining tissue is mixed in with the muscle wall. Reading up about adenomyosis I discovered that this could explain the nature and extent of the period pains I have experienced since adolescence. It might also explain my negative reaction to the Mirena/Jaydess coil (despite this being a recommended treatment for excess bleeding due to adenomyosis) and the problems I’ve had with menopause. It may also explain why I’ve been prone to gain weight, as excess oestrogen can increase fatty tissue and fatty tissue can increase oestrogen production. But the most striking new info for me was the fact it is associated with premature delivery – as I’ve carried a lot of guilt about not having managed to sustain the pregnancy with my twin daughters to full term, and I’ve never had an explanation for why this happened. So I’ve started to reevaluate what I thought were the truths of my own life and how my body operates. I’ll learn more as I follow up with the consultant gynaecologist next week, but it seems bizarre to have lived with something that has potentially had significant impact on me throughout my adult life without being aware of what it was. But women’s health has always been an area in which medicine has lagged, and for the most part when it comes to menstrual or menopausal issues we suffer quietly. I’ve blogged before about how we need to assert our needs, and yet here I am realising I haven’t done so, as I didn’t realise my experience wasn’t the norm until the symptoms became too intrusive to work around.

Health symptoms also remind us of our own mortality, and the privilege of being healthy and able bodied. Having to reappraise our plans in light of health challenges or functional limitations can be another trigger for reflective hindsight. As can the illness or death of a loved one – or a public figure like the queen. Health is not a meritocracy, and lifespan does not reflect the value of a person. We are not guaranteed to live the average lifespan. We may get more time, we may get less. If we knew today that our time was limited, would we look back and wish we had done things differently? If so, maybe it is worth reflecting on our priorities now, because time is always limited – even if I live another 50 years. I feel incredibly lucky to have spent over a quarter of a century feeling loved by someone I love, to have had the benefit of a supportive family, and to have wonderful children who I get to spend time with every day. So the big building blocks of my life are firmly in the right place. However, I’m sure that there are small changes that could help me to spend less time on work and trying to make the future opportunities we have better, and to focus on the joy available within each day. Reading back over this blog, which I started eight years ago, I can see progress in some areas (I’m much clearer about my values, and what I want to do professionally, and have a tighter focus in how I want to make impact in the world). But I also see themes where I identified the need to make positive change that are still pertinent in my life today. So I need to think why I haven’t been able to prioritise self-care more, or to get rid of the physical or metaphorical clutter in my life, and how I can make space to be creative, spend more time in nature and connect with like-minded others. Maybe I should get some more coaching or personal therapy to reflect on this.

Gaining insight about ourselves is a particular kind of opportunity to grow and learn. Whilst it can be challenging, that reprocessing of experience over time and with greater information is a core part of personal growth (and a key foundation of the scientific method – that as we understand the facts better, we look again at our working hypotheses and adjust them to fit the new information). Understanding ourselves better can help us reach greater happiness and self-actualisation, and also helps us to understand our place in relationships with others, and in the wider world. It is a key part of the journey towards both happiness and wisdom, and lets us hang onto our values, despite the storms of political decay, inequality and climate change raging around us, which could so easily lead to feelings of despair and helplessness. Maybe the key to happiness in challenging times like this is to reflect on the things that you can change, and find a way to not dwell too much on what you can’t.

I sometimes find it heartening to think about how each honey bee makes less than 1/12th teaspoon of honey in their lifetime, yet pooled together it is enough to ensure the future of the colony. It helps me to remember that to make the world better, you don’t need to solve the big stuff, just focus on doing your 1/12th teaspoon to help others. A bee won’t directly benefit from the honey she makes; instead, it will allow future generations to thrive after she is gone. This too is how we can change the world — by each doing the small things we can, and inspiring others to do likewise.

Accountability

On 31st March, a week or so after the coronavirus pandemic lockdown began, I was contacted by the HCPC.

“I am writing to inform you that we have received a concern about your fitness to practise” the letter began. “We will now carry out an initial investigation into the potential fitness to practise issues identified in the concern. This may involve gathering relevant information from a number of sources.
  
In order to assist with our enquiries, I would be grateful if you would provide the following information:
  
– Confirmation that you are the owner and/or moderator of the site ClinPsy.org.uk.
– Confirmation of whether you, or any of the other owners/moderator of the site have received any concerns/complaints about the content of the forum, particularly regarding [celebrity psychologists]
– If yes, please provide a copy of the complaint/s and the site’ s response.
– If not provided above, you are welcome to provide a brief response to concerns raised.
– Confirmation of your current employment arrangement.
– If applicable, please provide the name and email address of your line manager and HR director.

I replied the same evening:

I own www.clinpsy.org.uk I can confirm that I have never had any complaints in any form about any comment on [celebrity psychologists] on the forum – in fact I have never even heard of [the complainant], and can find no reference to him on the forum. I’m afraid you will need to let me know what comment is being complained about to enable me to respond to it.
As to my employment, I am self employed and run my own small business, so there is no line manager or HR involved – but I have to ask why you would think that relevant when a person is complaining about an unspecified comment on social media?

I then contacted my professional indemnity insurance provider and spoke to Mike Wang, chair of the ACP (he was my MSc supervisor and then my clinical course director, and we have stayed loosely in touch since then) who were both reassuring that this wasn’t a legitimate complaint. Later I got legal advice through my membership of the FSB, to check I had fully understood my legal obligations as a forum owner. All of us wondered why the HCPC would launch an investigation at all, given that I had never made a comment myself about any of the individuals named in the complaint, and the forum had been very proactive in ensuring no defamatory content was permitted. The forum does have a thread about “celebrity psychologists”, where legitimate concerns are raised about individuals who appear on television or in the newspapers making comment as “psychologists” who are outside of the scope of HCPC registration. But I could see nothing defamatory in it. In fact the moderating team had carefully checked the content and I had even posted a reply to remind people about our defamation policy and how to raise a concern. So I started to draft a full reply to the HCPC.

Just to be sure, I spent many hours obsessionally trawling through content on the forum and my social media and could find no interaction with the individual concerned, or any defamatory content about any celebrity psychologist on my forum. That isn’t to say members of the forum haven’t criticised such individuals, or that I don’t share similar concerns. Quite the opposite, I’ve been raising concerns about the limited scope of regulation for psychologists and therapy professionals for more than a decade and see this as another example of where the legislation fails to protect the public. However, I have never expressed this as a personal attack on an individual, or said anything unprofessional or defamatory.

At this juncture it might be helpful for me to note what defamation is, what a complainant can do about online defamation, and what the legal rights are both of the individual who believes they have been defamed, and the established defences against claims of defamation, as they will set this complaint in context.

Defamation is the action of damaging the good reputation of a person through the oral or written communication of a false statement about them that unjustly harms their reputation. The important part of that definition is that the statement must be false, and it must cause them harm (which must be demonstrable within 12 months of publication). Being rude about someone or insulting towards them would not normally be defamatory, though it might be unprofessional. As a website owner I am technically the publisher of the content shown on the site, and whilst I cannot be held legally accountable for other users being rude or insulting (though we have worked hard to create a professional culture and to have policies that prevent personal attacks or unprofessional behaviour), I would be accountable if something defamatory was published – if I was aware of it and failed to act to remove it when requested to do so by the individual it affected.

The problem here was that the HCPC did not share any details of the complaint with me, and the complaint communicated was entirely vague and did not refer to particular comments or even allege defamation. It was also made by a third party, rather than the individual that the complainant said had been maligned – making it rather extraordinary that the HCPC would give it even a cursory investigation.

But even with the assumption that someone had said something on the forum that an individual had felt was defamatory – which was far from the case – the law requires that individual (not a third party) to inform the publisher and ask them to remove the content, within 12 months from publication. And in this case most of the comments about celebrity psychologists had stood for 7 years, and no complaint had ever been raised with the forum – despite every post having a button to report it to moderators for review, and a prominent defamation policy that was linked by me in the very thread concerned, in a post giving the forum email address to make such a report.

There are also two main complete defences to defamation allegations; truth and honest opinion. If a statement is true it cannot be defamatory. For example, to say that a celebrity psychologist is not a registered practitioner psychologist or does not have a doctorate is not defamatory if these statements are factually correct. The other defence is that someone is expressing an honest opinion or making “fair comment”. This allows discussion of matters of public or professional interest, and means it is not defamatory to express a view that an honest person could have held on the basis of any facts or anything asserted to be a fact by reasonable sources available to them at the time. That is, if I said “Boris Johnson is a liar” this could not be defamatory because numerous sources have asserted this to be the case. Honest opinion can also be a reaction to something else that has been published, and can even defend someone posting something that is incorrect, if it was an honest belief based on the information available at the time (for example, writing “X isn’t registered with the HCPC” wouldn’t be defamatory if a person had their HCPC registration in a different name, or it didn’t show on the website yet, or the name checked was spelt incorrectly because that was the spelling used in the article under discussion).

As far as I could see, all comments that were on the forum about celebrity psychologists, or made or retweeted by me on social media, involved telling the truth or making fair comment about known or published facts.

On the other hand, my investigations showed me that the complainant was someone financially connected to a celebrity psychologist who frequently threatens properly registered mental health professionals who criticise his connection with referral to the HCPC. I also found that the individual concerned had used anonymous IDs to respond aggressively to critics of his favoured celebrity psychologists, and to place more flattering quotes and reviews about them into the public domain (and to post about her on my forum). I also heard from other colleagues who had been harassed for raising similar concerns. One noted:

“This is one of the perversities about the register and use of the title psychologist; as [celebrity psychologists] are not registered they are able to freely mislead the public about their status and not be held accountable and yet they can put in complaints to the HCPC about those of us that are properly qualified.  The complaint is vindictively motivated [and yet effective as a deterrent/punishment for critics]“

So on 2nd April I sent the HCPC a robust reply:

I have had a better look into this and I am now in a position to reply more fully.

For reference, the forum has run for 13 years and contains 152,000 posts on over 15,000 topics. We have never had a formal complaint about our content, and we have a team of moderators who are all HCPC registered clinical psychologists who help to ensure we maintain a professional tone in all content. Every user has to agree a statement about the rules of the site to sign up (which can be read here: https://www.clinpsy.org.uk/forum/viewtopic.php?f=2&t=16012) and we have written guidance for users that spells out our rules (which can be read here:https://www.clinpsy.org.uk/forum/viewtopic.php?f=2&t=10). The guidance is sent to each user in a welcome message as they sign in for the first time and cautions against personal abuse or defamation. Rules 9 and 11 specifically talk about being respectful of others even when disagreeing, avoiding defamation and ensuring posts do not risk bringing the profession into disrepute. It also explains how any post can be reported to moderators by clicking the small triangle button and stating your concerns. We have a pinned post giving specific guidance about defamation (see here: https://www.clinpsy.org.uk/forum/viewtopic.php?f=2&t=9&p=10) that is linked prominently from that guidance, and note it includes the means to contact us to report any content that is potentially defamatory at the bottom of the page: “If you believe a post has been defamatory about you, or an organisation you represent, please email us at clinpsyforum@gmail.com and we will respond as quickly as possible”. 

We have a proper process for responding to a complaint, and a team of qualified CPs who act as moderators that I consult with. However, our complaints process has only been activated once (when an approach to purchase the website turned into correspondence disputing our negative review of a travel agency offering work experience placements to psychology students, but they did not register a formal complaint and we did not find any content that was not factually supported when we investigated) and I can confirm that we have never had any complaint from any of the individuals mentioned in your email. We respond frequently to reports on individual posts, which mainly notify us of spam but can also highlight inappropriate content such as potential breaches of confidentiality. These are dealt with within 3 working days. We have never had a report in relation to defamation or to any content relevant to this complaint.

We do have one thread where [celebrity psychologists] are mentioned – you can read it here: https://www.clinpsy.org.uk/forum/viewtopic.php?f=12&t=13708. It was started in 2012 where forum members raised concerns about “celebrity psychologists” who do not have HCPC registration but appear to be giving the public the impression they are regulated professionals. The thread stood for 8 years and the majority of content was posted two or more years before I contributed to it at all. I did review the entire thread at that point and found nothing defamatory. Nonetheless my response includes the following: 

“The issue of psychological therapists who practise outside the scope of professional regulation is one that is important to many of our members who work hard to gain practitioner status with the HCPC, because we believe in the principle being important to protect the public (regardless of the individuals involved).

As with any other thread on the forum, if any of the content of this thread is considered defamatory the the individual involved is welcome to email the site (clinpsyforum@gmail.com) and point this out and we will remove it.” 

The thread was then dormant for nearly six years, before being raised to discuss the way some “celebrity psychologists” were using BPS membership to give the impression of professional qualifications, whilst apparently breaching BPS guidance. I had raised these concerns with the BPS and mentioned doing so on the forum and on twitter. However, as with the content in the thread, the concerns were about the misrepresentation of professional titles and skills, and the role the BPS take in giving credibility to psychologists who are not HCPC registered practitioner psychologists, and their lack of will to intervene or regulatory teeth when concerns are raised about these individuals. Whilst one or two of my posts are critical of specific things that [individual celebrity psychologists have] written or said I cannot see any defamatory content. I have made no direct criticism of [the individuals named in the complaint], and there has never been any mention of [the complainant] on that thread or elsewhere on the forum.

Nobody has raised a complaint about that thread. I have reviewed it today, and whilst there is legitimate concern about misrepresentation of qualifications and the public perception of psychologists, based on things written or said by various unregulated “psychologists” in the media, I cannot see anything defamatory in the content. [Far from being unprofessional, I believe we have gone above and beyond requirements to prevent defamatory or unprofessional content. I posted in that very thread] how to report any concerns about defamation, and have been mindful to allow only appropriate professional concerns about misrepresentation to be raised on the forum, rather than personal attacks or potentially defamatory content.

I do not believe that it can possibly impair my fitness to practice as a clinical psychologist to have hosted or participated in discussion about potential misrepresentation of professional qualifications by “celebrity psychologists”. This has not been defamatory, and I believe it to be legitimate for members of a clinical psychology forum to raise professional regulatory concerns about public figures – especially when these are factually based, shared by many practitioner psychologists and early career stage psychologists, and have been raised appropriately with professional bodies including the BACP and BPS. The posts on the forum that were critical of these individuals were based on the content of their newspaper columns and television appearances, how they are introduced in TV programs, and their stated qualifications and experience on their websites. For example, it is a true fact that Emma Kenny is not a clinical psychologist, despite being introduced in a BBC television series as being one, and this being a breach of the regulations that brought us under the auspices of the HCPC.

I would note that it is entirely lawful for individuals to publish honest opinions on a matter of public interest and based on facts which are true – this is known as “fair comment” or “honest opinion”, and has been tested through the courts by cases such as British Chiropractic Association vs Simon Singh, which led to the Defamation Act, 2013. This introduced a number of protections against allegations of defamation, including truth, honest opinion, public interest, and a defence for website operators hosting user-generated content, provided they comply with a procedure to enable the complainant to resolve disputes directly with the author of the material concerned or otherwise remove it. This ensures that individuals who own or run websites that allow comment are not liable for the content of other user’s comments on it. It requires that the complainant must contact the site owner or administrator to raise a complaint in which they specify the complainant’s name, the statement concerned, where on the website it was posted and explain why it is defamatory, before taking any other action in relation to alleged defamation. These complaints can only be made by the person who has allegedly been defamed or their legal representative.

We have never received any complaint or notification of potential defamation, or any communication from [celebrity psychologists] or their legal representatives, and as previously stated we have never mentioned, heard of or communicated with [the complainant]. Thus a non-specific complaint to the HCPC made by an individual who has never been mentioned on the site seems quite inappropriate as a means to address concerns. I would therefore hope that the complaint can be quickly dismissed.

Yet the case still wasn’t dismissed, despite the fact I had demonstrated that a) I had not made any defamatory comments about the individuals concerned and b) there was no legal basis to hold me accountable for posts made by others on a forum that I own (even had any been defamatory, when none of them had been).

I was then asked on 6th April to provide proof that no complaints had been made to the website. Aside from the fact that it is not my burden to prove a negative, and almost an impossible task, I spent the next 3 hours responding to this request, searching the email correspondence, administrator and moderator report logs for each name or the word complaint, and submitted screen shots of every search. These were acknowledged on the following day.

Yet the case still wasn’t dismissed.

I then heard nothing for 4 months. So I wrote on 12th August to ask whether the complaint had been dismissed. This email was acknowledged, and I was told I would receive a reply within 5 working days, but received no reply. I therefore emailed again on 20th August, which again had no reply. So on 26th August I raised a complaint.


My complaint was that this “fitness to practise concern” was obviously spurious from the start, and should never have reached the point of even a cursory investigation (given the complaint was from a person I had never interacted with, about comments made by people other than me about people other than him). But even if it did, in error, reach a cursory investigation, surely the information I provided within 3 days was enough to say “sorry, it is now clear this isn’t a legitimate complaint” and not keep me under the stress of a formal fitness to practise investigation? How this can still be hanging over my head five months later is very troubling. Surely there must be a process for checking the prima facie validity of complaints, that should have dismissed this? What if I had been employed, and this had led to me being suspended or fired? How you could do this to a person struggling to sustain their business through a pandemic lockdown over such a trivial and spurious complaint is beyond me.

On 4th September the investigation was officially closed. The HCPC informed me:

I am writing to let you let you know that we have now completed our initial investigation into the concerns we received about your fitness to practise.

During our investigation, we obtained information from the Complainant and yourself. We have now assessed the concern, and all the information we received, against our threshold criteria for fitness to practise investigations.

In doing so, we have considered whether this matter may be a breach of the following HCPC Standards of Conduct, Performance and Ethics:
2. Communicate appropriately and effectively
6. Manage risk

The outcome of our assessment is that the threshold criteria for fitness to practise investigations has not been met in this instance. This means that we do not consider that the concern, or the information we have obtained about it, amounts to an allegation that your fitness to practise may be impaired.

The reasons for our decision are explained in more detail below:

Issue 1 – comments of an offensive, bullying or inappropriate nature on social media

Registrants are not prohibited from expressing their opinions on social media, provided the content or language used is not inappropriate or offensive.

HCPC Guidance on Social Media advises Registrants: ‘ When using social media you should apply the same standards as you would when communicating in other ways. Be polite and respectful, and avoid using language that others might reasonably consider to be inappropriate or offensive. Use your professional judgement in deciding whether to post or share something.’

From the links and screenshots provided, the content of the forum appears to be confined to a discussion of professional concerns and information already in the public domain. Regarding the opinions and concerns expressed in the forum, the HCPC would be out of place to prohibit its Registrants from having a free discussion about their concerns or limit their ability to express their opinions. Of the information provided and the search conducted, I am unable to find any statements which amount to ‘trolling’  or bullying.

As our process is evidence based, we cannot proceed with our investigation without evidence to support the concerns. The Complainant was given multiple opportunities to provide evidence that you contributed to and offensive or inappropriate content, but has failed to provide information which supports the concerns.

Issue 2 – hosting comments by others of an offensive, bullying or inappropriate nature on your site

You have provided evidence that you have put multiple protections in place to ensure the tone, language and content of the forum is not defamatory and does not stray into inappropriate content or language. Where members breach these terms, you have a team of moderators who will respond.

In providing individuals the ability to report specific posts and comments, you have acted in accordance with your professional duty to support and encourage others to report concerns(SCPE 7.2). You have evidenced that you have not received complaints on this thread, and therefore have not been in a position to respond to such concerns.

In the absence of any evidence to suggest you have not complied with the relevant obligations, there is no information to suggest that your fitness to practise may be impaired.

We will therefore not be taking any further action in relation to this matter and have closed our file on this case. However, please continue to be aware of our communication guidance when reviewing your forum/website.

We appreciate that this has been a very stressful time for you and would like to thank you for your co-operation and patience during our investigation.

So, to my relief, they got there in the end and the complaint has been dismissed. However, my question is why the complaint got through the starting gates, and why it took 5 months, 2 emails and a formal complaint to resolve.

But more than this, why do the BPS continue to endorse these “celebrity psychologists” and do nothing to protect or support genuine practitioner psychologists against this kind of attack? Despite numerous complaints about “celebrity psychologist” Jo Hemmings in the context of her article about Meghan Markle being manipulative, the BPS sat her down for a chat and took her at her word that she would be more careful in future. And they’ve not replied to any of my emails in the six months since I suspended my membership, saying I would not continue membership until they responded to the concerns I raised about their endorsements not protecting the public.

And more than this, why does the legislation not distinguish genuinely qualified and accountable professional psychologists within the scope of regulation from anyone who calls themselves a psychologist? In Australia it is an offence with enormous financial penalties to misrepresent someone as a psychologist or claim to be a psychologist if not within the scope of statutory regulation. So the public cannot be misled by the media citing quacks or charlatans who claim qualifications, but actually have to check their registration before using them as experts. Here we haven’t even got that protection for who can be called as an expert witness to inform critical decisions in the courts. The scope of current regulation fails to protect the public, yet nobody – not professional bodies or politicians – seems to care.

Grand ideas

I recently filled in an application to speak at an event about children in Care. The form asked me to summarise in a limited number of characters what I would bring to the table as a speaker. I wrote:

We have collected BERRI data on the psychological needs of over a thousand children in residential children’s homes over the last five years, and surveyed and trained over a thousand residential care staff to provide care that is tailored to those needs. We can present what this data shows us, and how we have used it to improve the services that are offered, and commissioning decisions made about children. For example, we have learnt that the level of challenge presented varies remarkably little by age or gender, though the types of needs are slightly different. Some types of needs (eg behaviour, risk) are affected much more by proximal stressors (eg exclusions from school, gang involvement, substance misuse, sexual exploitation) whilst others (eg relationships) are affected more by historic adversity and the nature of early attachment experiences. We can present how staff variables (demographic factors, burnout, empathy, ability to formulate) affect the care they deliver, and how the price and types of services commissioned relate to the needs of the child and the impact they make on the life of the child – if at all!

The government spend a billion pounds a year on these 7000 children, and we have good evidence that by better targeting the psychological needs of individual children they can improve outcomes whilst saving costs.

It struck me when I looked at that paragraph that this was simultaneously a grandiose claim and underselling the potential of the systems we have developed*. I think that tension between over and under-selling what we can do reflects one of the big challenges of being an entrepreneur – seeing the potential, whilst being realistic about the frustratingly slow steps it takes to achieve it. I can see so much that we can achieve, and the way that collecting the right data can help put children’s needs in the heart of commissioning decisions, improving outcomes whilst saving substantial amounts of money but it is very hard to get this information in front of the right people. I’ve tried to speak to politicians, policy makers, experts in the field, commissioners, clinicians, funders and the media. I’ve spoken at conferences, written a book, contributed to policy documents, delivered service improvement programmes in major providers in the sector, I’ve even given evidence before a select committee. But because I try to answer the questions that are asked, I don’t always get the chance to promote the products and services that we provide. And it isn’t my personality to aggressively sell what we do.

Looking back, I think that I believed that if you work out a better way to do something, a technique that saves time or money or improves outcomes for people, then once people knew about it then it would start to gain traction until it became the established way of doing things. I figured that was how we had progressed from horse-drawn carts to steam engines, cars and now electric vehicles, or from papyrus to paper to typewriters to computers to the plethora of voice-activated, photo-capturing, text and graphic app laden smartphones – finding iteratively better ways to solve problems. I knew that sometimes there were two simultaneous steps forward that competed (like VHS and Betamax) and that variables like marketing, networks and budget could influence the choice, but I generally thought that the best solutions would win through. Maybe it is my left-leaning political bias or my hippy upbringing, but I think in my heart I have held onto a naive idea of fairness in which everyone should be motivated to solve social problems, and people should be rewarded for their effort and insight.

I suppose the concept that we live in something of a meritocracy is quite a widespread belief, and entrenched in western cultures, that good ideas will surface and the best people will rise to positions of power. That’s taken a bit of a crushing for me over recent years, as I’ve seen the covert influence of the super-rich and we’ve had several prominent examples of terrible people rising to the top of systems that have failed to keep up with social and technological change, but somehow I am still hoping for the system to right itself, because it feels like society should be a functional meritocracy.

I think it is particularly well articulated in the USA, because they started as a nation of immigrants who created their own society. To quote the American Declaration of Independence, “all men are created equal”, are entitled to “the pursuit of happiness” and will rise to their natural position in society. That sounds like a fair way to run a country, but of course the reality has never quite matched the headlines, given the theft of land and resources from native peoples, the decimation of the natural environment and the evils of the slave trade. But somehow the myth of the American Dream has persisted. First described by James Truslow Adams in 1931, it describes a culture where anyone, regardless of where they were born or what class they were born into, can attain their own version of success in a society where upward mobility is possible for everyone. The American Dream is achieved through sacrifice, risk-taking, and hard work, rather than by chance or the privilege of your pre-existing connections. In Adams’ words it is:

a dream of social order in which each man and each woman shall be able to attain to the fullest stature of which they are innately capable, and be recognized by others for what they are, regardless of the fortuitous circumstances of birth or position

Whilst I can see so many places where people are not starting the race from the same starting line, because of geography, race, gender, religion, socio-economic adversity, sexuality, age, or so many other variables I have clung on to my optimism that if you can work out a solution to a big social problem, or have an idea that can really work to make life easier (and/or make lots of money), then it should be possible to gain traction with it, get key people to support you, and get it to happen. The reality is that so many people who think of themselves as examples of a working meritocracy have in fact been handed a huge head start by their privilege. As we joked the other day on Twitter, all the wrong people have imposter syndrome because it is mutually exclusive with entitlement. It seems that private schools in particular train people to expect to be leaders and wielders of power, as we see in the preponderance of Prime Ministers educated in Eton (and in the irritating arrogance of Lottie Lion and Ryan-Mark in the recent series of the Apprentice). Having attended an ordinary comprehensive, and never having been aware of any negative repercussions of my gender or heritage, it has been quite eye-opening to see that maybe the playing field isn’t as level as it appears, even for someone ostensibly white and middle class**.

One figure that has stayed with me is that of all the money invested into fledgling businesses in the UK, 89% is given to all male founder groups, 10% to founder groups containing men and women, and just 1% to all female founders. I couldn’t find any UK numbers, but the figures look even worse if we consider race, with black women only receiving 0.0006% of the of the $424.7 billion that has been invested into startups globally between 2009 and 2017 by venture capitalists. Those white men probably think they simply have better ideas, but the evidence doesn’t support that, whilst the statistics say they are 89 times more likely to be funded than all female groups, whilst a white male entrepreneur is thousands of times more likely to be funded than a black woman, and will have the confidence to ask for much larger sums of money. Only 34 black women have raised more than a million dollars of investment in the last decade. This doesn’t reflect the quality of the idea or the work ethic of the individuals involved (as meaningfully empowered women on boards increase corporate social responsibility and may have a positive impact on the profitability of the business, and diversity increases profitability). It reflects the stereotype of what the (predominantly white male) funders think successful entrepreneurs look like – and they imagine young geeks from silicon valley who are predominantly white and almost always male. And that sucks.

It might also explain why men in suits with glossy patter are able to sell systems they have pulled out of the air for eight times what we charge for properly evidenced tools that do the same job better. Or maybe that’s just a coincidence. But whether or not the playing field is flat isn’t something I can solve alone, and it is unlikely to be resolved within the timescale that is critical for me to make a success of my business and to maximise the impact I can make on the lives of vulnerable children. That means that, despite how discouraging it is to realise that we are not living in a meritocracy where the strength of the idea is enough to sell it to those who matter, I need to find ways to shout louder, communicate what we do better, and get our message in front of the right people.

Because we are tantalisingly close to having all the data we need to understand the critical variables at play in the psychological wellbeing of children and young people in Care, and which placements and services can help to address them. We have an exciting partnership growing with a group of local authority commissioners that will couple our data with commissioning data, and we are applying for grants to help us to gather and analyse that data across much wider samples. We are also scaling up the previous project we did looking at whether BERRI can help to identify suitable candidates to “step down” from high tariff residential settings into family placements with individualised packages of support. These larger scale projects mean that we will be able to show that the model works, at both the human and financial levels. And with a little bit more momentum we can start making the difference I know we are capable of. The trick is hanging onto the vision of what is possible and celebrating what we have already achieved, whilst having the realism to put in the graft that will get us there. I need to keep pushing upwards for longer than I ever imagined, in the hope of reaching the fabled sunlight of easier progress – even if so many variables skew us away from the meritocracy that I imagined.

 

*I think that’s why I used the pronoun “we” and shared credit with my team, even when I was asked to describe myself as a speaker, rather than taking full credit on my own. This transpires to be a common female trait, and part of the double bind for women where being assertive is seen as aggressive whilst being collaborative is seen as lacking leadership. In fact, many words are used exclusively towards women and highlight how pervasive these biases about women in leadership roles are.

**albeit a second generation immigrant to the UK, with Jewish heritage

Can you make things better for children and young people in Care whilst saving money?

That seems to be the critical question in an age in which there is no money in the budget to try anything innovative just because it will create improvement. To be able to try anything new that involves spending any money we have to evidence that double win of also saving costs. A few years ago when I was in the NHS, I found that really frustrating – I had so many ideas about how we could do things better by creating new services or better collaborations with other agencies, or reaching out to do the proactive and preventative work that would save money down the line, but it was almost impossible to get them off the ground because the budgets were so tight. Since then I’ve tried various things to unlock the spend-to-save deadlock, but it was only once we started looking at the economic impacts of some projects using BERRI that we had clear evidence that we could save money whilst making services better, and on a fairly substantial scale. Our pilot in Bracknell Forest saved £474,000 in the first 12 months whilst making services better and improving the outcomes for the young people involved. And that was just a small scale pilot within a single local authority.

After so many years of being told that improving outcomes whilst saving costs would be impossible it sounds unlikely, but it is true. We made life better for the children involved – in some cases in ways that entirely changed the trajectory of their lives – whilst reducing costs for the local authority. The savings generated would be enough to fund services to address the mental health needs of all Looked After Children whilst still lowering the overall cost of Care. I’m not prone to hype, but that feels pretty extraordinary! Importantly we did it whilst also making life easier for the carers, professionals and placement providers involved. So it is no great surprise that we are now working with many Local Authorities to scope out and deliver wider scale projects.

So, what are we doing that is different? And where do the savings come from? Using BERRI we are identifying psychological needs effectively, and then addressing them early. For some young people that leads to significant change in their behaviour, risks or mental health, that then opens the door to different placement options, and for a small proportion of children the placement costs are substantially reduced. I’m not talking about forcing children in residential care to move to foster placements for financial reasons. I’m talking about better identifying the types of placements and services that young people need. For some, that will mean that they get to access residential care without having to break down a long series of foster placements to do so. For others it will mean that they get access to much increased mental health input, or specialist services. For many it will mean helping their carers to better understand their needs so they can make minor adjustments to the day to day care. But for some children it can open (or reopen) the doors to a family placement.

It may also have an impact on their longer-term trajectory, as it is well known that addressing mental health needs in childhood is easier and more cost effective than trying to address the difficulties they go on to develop in adulthood if these needs are not addressed. Using the BERRI helps carers to see behind the presenting behaviours and to recognise emotional, relational or attachment needs, or feel empowered to support these more empathically. Importantly, it can evidence the impact of the great work that many carers and organisations are doing already to support children by showing the changes they are making over time. It can help to set goals to work on, and to monitor what is and isn’t working effectively to create positive change. BERRI also helps to pick up learning difficulties, neurodevelopmental difficulties and disorders, so that children can then be more thoroughly assessed and care and education can be pitched appropriately.

We are also learning from our increasing data set what scores are typical in different settings, how individual children compare to the general population, and which variables are important in preventing negative outcomes in adulthood.

I sometimes use the metaphor of the cervical cancer screening programme. At a cost of around £500 per woman each 3-5 years, the screening programme prevents 2000 deaths per year. About 5% of women screened have abnormal cells, and 1-2% have the type of changes that are treated to reduce risk. As a result women who are screened are 70% less likely to get cervical cancer, which has an enormous human cost, but also costs £30,000+ to treat. Screening has saved the NHS £40 million. Most importantly it has led to the discovery that the human papillomavirus is significant in the development of cervical cancer. This has led to preventative treatment programmes with 10 million girls in the UK receiving the HPV vaccination. This has reduced the rates of cervical cancer (with 71% less women having pre-cancerous cervical disease), as well as preventing genital warts (by 91% in immunised age groups). It also has the potential to reduce other forms of cancer, as HPV is responsible for 63% of penile, 91% of anal, and 72% of oropharyngeal cancers, with this and the importance of herd immunity leading to the decision to immunise boys as well as girls in many countries.

I would argue that the case for psychological screening, particularly in population groups that have experience trauma, abuse or neglect, is even stronger. More than half of children in Care have a diagnosable mental health condition, and half of the remainder have significant mental health need that doesn’t reach diagnostic thresholds or doesn’t fit into a diagnostic category. They also go on to higher risks of a range of negative outcomes than the general population, including having a higher risk of heart disease, cancer, strokes, fractures and numerous other health conditions, as well as more than fifty times higher risk of homeless, addiction, imprisonment, requiring inpatient mental health care, or having their own children removed into Care. Like cancer, these have an enormous human cost on the individual and their network, and they also have a huge financial cost for the public purse (some estimates suggest £2-3 million per young person leaving Care, when including lower contributions to tax, increased benefits and the cost of services). If we can understand and address the issues that lead some young people down these more negative paths, and address those needs as early as possible in their lives, hopefully we can increase the proportion of young people who survive difficult early lives and go on to healthy happy adult lives.

If you want to learn more about BERRI and the impact it can have on your services feel free to get in touch. Or you can come and learn more about the pilot in Bracknell Forest and the larger scale projects we have started to expand on it, as I am presenting at the NCCTC next month with Matt Utley from the West London Alliance.

How not to apply for a job in psychology

I’ve been shortlisting for a new post today, as we’ve already received 43 applications for the advert I put up yesterday morning*. For a profession in which there is a narrative that prestigious Assistant Psychologist posts are almost impossible to get, the quality of applications is surprisingly poor. I don’t mean that the applicants themselves are surprisingly poor, as they seem to generally be alright, but the way they have applied for the post is, for far too large a proportion of those applying, pretty disappointing. It isn’t going to affect the outcome of the process, as there are some really good applications so we won’t have any trouble finding enough to interview, but there are far too many people who rule themselves out of the running unnecessarily. Many of these applicants might be quite good, but their applications fall far short of my shortlisting criteria for really obvious and easily avoidable reasons. That means that for people who do follow a few simple tricks** you greatly increase your chance of successful applications – not just in my post, but in any application within the field of psychology, and probably most of the advice will generalise to other job applications too.

Before you think that I’m a control freak with unreasonable expectations of applicants, please remember that the context is that 70+ candidates will apply for my vacancy before I close it, and NHS posts will typically attract 100-200 applicants within a short period of time, leading some to close in just a few hours. The balance of supply and demand here means that it’s a shortlister’s marketplace, and only the best applications from the best applicants will lead to an interview. That means that qualified CPs selecting for AP posts have to set high standards to let them narrow down the number of applicants quickly to a manageable amount that they can then shortlist in more detail. And having spoken to many other people who have been responsible for shortlisting similar posts and seen the posts on the thread on this topic on the clinpsy forum, my expectations and frustration with candidates who fail to do the simplest things to present their application properly are echoed by many of my peers.

Whilst these posts are particularly competitive and the application process has some sector-specific features, like the nature of GBC, and the relative values given to particular kinds of experience, what I am talking about are basic job seeking skills that should be taught by every career service or recruitment website. Not only that, but if you do a search on clinpsy you will see that the expectations held by people shortlisting for AP posts are clear, and there is a lot of advice available on this topic in the public domain. We are not expecting people to crack some secret code or have access to hidden insider information: Most of the things that would make the difference are things that require common sense and a bit of effort. My main grumble is as simple as people not reading the instructions on how to apply that are given in the job advert and firing off applications that aren’t specific to the post or don’t contain the required information, or that are really badly presented.

When it comes to my current post I’m not even asking anything too onerous. I haven’t set a task or asked anything unusual. I just want candidates to send a short CV and a covering letter saying how you fit the requirements of the post, with details of two referees. Surely that’s the minimum expectation when applying for a job, and pretty parallel to the NHSjobs expectation of giving education and employment history and then writing the supporting information and references? Yet a significant proportion have submitted applications with no covering letters, no references, or no information about why they want the job or are suited to it. To me that’s like going fishing but not taking a rod or a net.

In terms of essential criteria I’ve asked for a degree conferring GBC at 2:1 or better (or a degree level qualification in statistics or research), along with a driving license (or a transport plan for candidates with a disability to be able to complete the job). Yet many applicants have told me they will complete their undergraduate degree this summer, or don’t have a driving license. There are international applicants who haven’t shown me they can lawfully live and work in the UK. There are then applicants who haven’t given me information I need in order to see they meet my essential requirements. Perhaps they qualified abroad or with joint honours and they haven’t told me that they have GBC. Several haven’t given me a degree grade. Others might tell me that they had a particular job, but not give the hours or the dates so I can’t see how much experience they gained.

The process has really taught me how NOT to apply for a job in psychology, and I thought that might be expertise worth sharing. If you follow the advice I’ve numbered below, you too can be confident that you will maximise your chance to not secure a post!

So my first set of tips on how not to apply for a job are:

  1. Apply for jobs where you don’t meet the essential criteria
  2. Do not read the instructions on how to apply
  3. Do not write a covering letter (or supporting information section) at all
  4. Do not specify your degree grade
  5. Do not mention if you have GBC, even if you have an atypical qualification
  6. Apply from abroad but don’t worry to mention that you have the right to live and work in the UK
  7. Don’t tell me whether posts were full time or part time or the dates when you worked there

The next issue is that many (and in fact probably most) applications don’t tell me why you want this particular job, or how you meet our person specification. They fire off information that tells about their experiences and skills, but does nothing to show how they meet our shortlisting criteria, which are spelled out in the person specification. Few have told me why they want this job in particular as opposed to any job with an AP title or a CP supervisor. Some tell me about their aspirations to gain a training place and/or to have a career in clinical psychology, but (whilst I am aware that the post is a good developmental opportunity and I’m happy to support the successful candidate to develop) I’m not recruiting someone to help them achieve their aspirations. I’m recruiting to get a job done within my team, and their aspirations don’t tell me why they will be better at that job than the other 30+ people who have similar aspirations.

A significant proportion of applications consist of just a CV, perhaps with a very brief generic covering note. Many look like a mass mailing that the candidate sends out to every job listing that contains particular keywords. The result is that they feel like someone reading me a script to try and sell me double glazing or PPI claims without knowing anything about me – they have invested minimum effort but hope that if they apply to enough posts one might bite. In fact, many applications feel like they’ve taken less time to send out than they would take for me to read, and the impression given to the short-lister is that the person doesn’t care about the post at all.

Maybe it’s something about the internet age that people expect to be able to apply for a post with just a couple of clicks, like putting an item on an online store into their basket and then clicking to check out. If you had to invest the effort in phoning up for an application form and then filling it in by hand, as you did when I applied for my AP post in 1995, it might seem more obvious that you needed to make that effort count. But even then not every candidate would explain why they wanted the post. However the internet age also makes it easier to cut and paste the right chunks of information or to edit existing text. So it also makes it easier to tailor an application to a specific post.

So my next set of tips on how not to apply for a post are:

  1. Don’t read the job advert – the job title, pay and location are all the information you need
  2. Fire off a generic CV with no information about why you want the post or how your skills are suited to it (for bonus marks express interest in a different client group or service)
  3. Don’t even worry to read the person specification, that’s not important
  4. Don’t tailor your application to the job, just send the same application out to every post, regardless of the context or population.

The other big advantage is that the internet lets you check spelling and even grammar, so you really don’t need to submit applications that are peppered with typos and spelling mistakes. If you are dyslexic, get someone else to check it before submitting. If you feel too much time pressure to delay individual applications for proofreading then prepare the content you will need to configure most applications in advance so you can get someone to proofread your main blocks of text in advance. Word processing software also lets you count the number of characters, words and pages before you paste content in to your application, so you can easily follow any specified requirements. Which is why it is so puzzling to get six page CVs when I set a limit of two.

There are then other issues with how people present their applications. I get that pasting a CV into a recruitment site can mess with the formating, but you can normally use a preview feature to get the chance to see how it will appear to a recruiter, so it is worth checking. Simplify layouts and fonts and remove massive gaps that appear so that the CV looks neat and tidy. Keep it as short as possible. If I can write my CV on two pages, having worked in psychology for 24 years, managed teams in the NHS and now running my own business, I’m pretty sure that you don’t need six pages by the age of 23. And I’m sorry to break it to you, but I don’t care what your responsibilities were when you worked in that shop, or pub, or holiday resort in the summer before your degree. If you really want to mention it, I’m fairly sure one line would cover it. Otherwise it looks like you can’t prioritise – which is off-putting because being able to pick out the most salient information is an essential skill when deciding what information needs to go into a report.

So my next set of tips on how not to apply for a post are:

  1. Make lots of typos, and ensure to include as many spelling mistakes, punctuation errors and examples of poor grammar as possible (for bonus points, you could spell the name of the organisation or short-lister wrong, or try some text-style abbreviations)
  2. Lay your CV or application out so it is as unintelligible as possible, and definitely don’t check how it will appear in the application system
  3. Don’t worry about any requirements with regard to length, more is always better
  4. Put in lots of information about irrelevant experiences, such as work in retail and hospitality

I hope this blog doesn’t seem like I’m putting people who are just starting out in their psychology career down, or criticising those who have applied in a hurry for fear of the post closing before they have time to submit anything at all. My goal is entirely more positive – to share how simple it can be to make that impossible aspiration of gaining interviews for AP posts come true. There are certain really simple behavioural changes that can remarkably increase your odds of success.

So what can I do to improve my chances of gaining an interview?

First, apply to non-NHS job vacancies. It takes a little more effort to find them, and the quality can be more variable. However, they are a great foot in the door, and much easier to secure than their NHS equivalents as they tend to have lower numbers of applicants and to stay open a bit longer. If an NHS AP post means you have a 1 in 50 chance of an interview, a post outside the NHS might increase your odds to 1 in 15 for a fairly popular post, or even 1 in 3 if the post is only advertised on a company’s website and social media and not on a major recruitment platform. Yup, that one simple trick** can increase your chances by a factor of five!

Second, follow the instructions. Read the advert carefully and do what they tell you to do. If they ask for a two page CV make sure that you send one the right length. A 600 word essay? Well worth the effort, as sending it will double your chance of success compared to applying to a post without this requirement, as fewer other applicants will make the effort, whilst sending an application without it is posting your application straight into the no pile.

Third, tailor every application to show how you meet the person specification for that particular job, and to show you understand and are enthused about what the job will involve. Ideally you need to respond to every point of the person spec in a way that is clear and obvious to the shortlister, and probably in a similar order to that used in the specification. If they want a 2:1 or higher that confers GBC then you need to give your degree grade and specify it confers GBC, rather than assuming that the shortlister will know or be willing to check on Google whether this is the case. If you are applying from abroad or have international qualifications then it is worth stating whether you have the right to live and work in the UK, and explaining the scoring system and/or the UK equivalent of your degree grade.

Fourth, pick your battles. It is better to write fewer applications but to give each one more time so that it is of really good quality and tailored to the particular job than it is to send out hundreds of generic applications. Choose posts that you are enthusiastic about rather than applying to every AP post you see. Think about whether the location can work for you and whether you have relevant experience and/or transferable skills to bring. Make sure every application is up to the highest standards, even if this means they will sometimes close before you submit them***. In such a competitive field it is probably only worth applying for posts where you meet all the essential criteria.

Finally, check your working. Make sure you have spelt names and organisations correctly, and not made any silly typos or cutting and pasting errors. If you can, get someone else to read your text so you can get feedback on how to improve it. Even if that isn’t in time for the application you wrote it for, it will mean you don’t make the same mistakes next time. Preview the application to check the formatting if this is possible.

Then fire it off and cross your fingers!

 

*I’ll be reading more over the coming days too as we normally keep the advert open for a week or 75 applications, whichever comes first. Edited to add: We closed after 5 days and received a total of 86 applications. We invited five people to interview.

**cliche internet phrase

***In this circumstance it is worth sending an email to the appointing officer or point of contact given in the advert explaining what happened and attaching your application. They may consider it anyway, and even if they don’t you risk little by trying.

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.

Holding the buck: Some thoughts about accountability in the modern marketplace

A couple of weeks ago, I gave a talk to the Institute for Recovery from Childhood Trauma at the House of Lords. I decided it would be too stressful to travel down that morning, so about three weeks in advance I booked an apartment through booking.com. I’ve stayed in apartments and rooms through online sites quite a few times before without incident. Normally they send a code for the door by text or email, or instructions to open a key safe. However, this booking was confirmed with instructions to collect the key from a nearby address by 9pm (I was told if I arrived later there would be a £20 late collection fee). So I caught an earlier train and got a taxi to the pick-up address, which transpired to be an office building, locked up for the night. The security guard on site who came out to see why I was loitering had never heard of this being a collection point for apartment keys. So I spent 45 minutes waiting at the pick-up address and checking the apartment address just down the road, with no ability to check my email or find the phone number of the owner due to the o2 outage. I then found a restaurant which let me use its wifi to contact the apartment owner. He answers the phone as Booking.com and says the pickup address sent to me by email was never given (despite me having it in writing on my screen as I spoke to him) and that I had not confirmed the time. He says he will send a man to meet me with a key. But he isn’t willing to send the man to the restaurant in which I am sitting, I have to go wait across the road outside Patisserie Valerie (which is also closed) for a man in a red jacket.

In about 15 minutes that man arrives. He greets me by name, but does not offer me any apologies or identification. I can’t tell if he is the man I spoke to on the phone or not. He does not provide a key to the apartment, but tells me to follow him and walks off in the opposite direction to the apartment. I ask him where we are going, he says “to the apartment”. I say that it isn’t the right way, and I don’t feel comfortable following a strange man to an unknown address. He is short with me and tells me that he is taking me to an alternative apartment, because a cleaner snapped the key in the apartment door 20 minutes previously. I find this suspicious as a) I’ve been waiting at the apartment and just up the road for 90 minutes and nobody has come or gone from it in this time, and b) why would a cleaner be in an apartment at 10pm that is supposed to have check-in from 3pm to 9pm, and c) why did the man on the phone not notify me of a change of address or email me with a change of booking through the site on which I had booked?

He leads me down less busy streets and alleys across Soho. I start to get anxious that I’m in a part of London that is unfamiliar to me, and have no idea where I am going. I will not be at the address I have booked and nobody will know where I am, its past 11pm and dark, and I’m being led by a total stranger who has shown me no ID. So I call my husband, explain the situation and start reading out street names so he knows where I am. He says that I sound nervous, and that if my gut doesn’t feel like this is safe I should trust it and go somewhere that does.

My mind goes into overdrive. I start worrying I’m being taken to an unknown address, where I might be robbed or attacked or anything. I’m thinking perhaps they gave the fake address as a means to be harder to trace, or perhaps they use the photos of one apartment in a good location to put people in cheaper accommodation in less favourable locations. Perhaps he is nothing to do with Booking.com and is just a confidence trickster. Did he definitely use my name? Was he the man on the phone? I have no way of knowing. I can’t just follow a stranger to an unknown address in the middle of the night with no explanation. I find an open wine bar to run into and hide.

Suddenly, all those feelings are right at the surface and I’m sobbing with fear and hiding behind the counter of the wine bar until the man has gone. Then the man who claims to be from Booking.com (I still can’t tell if he is also the man in the red jacket, or someone different) calls me and asks where I am, and I say “I don’t feel safe dealing with you and being taken to an unknown address, I’m going to find somewhere that feels safe to sleep”. It seems like something I should be able to take for granted, that now seems out of reach.

The staff at the bar are super-nice and patch me up, give me some water and use of their wifi. They offer me wine and fancy olives. I take the latter (and they are the best olives ever, as well as thoroughly nice people, so do check out Antidote if you are ever in Soho). When I calm down a bit, I start searching all the usual websites to find a hotel room. I then find out there is nowhere else to stay. And I mean that literally. Even when I increase my parameters to travel up to an hour from my location, nothing is coming up on any hotel booking site that isn’t fully booked. So I’m sat there in a random wine bar in Soho, 200 miles from home, and there are no longer trains to get back there even if I didn’t have to be in London by 9am the next morning to speak at the House of Lords.

At nearly 11pm I find one, very expensive, hotel with a single room available through LastMinute.com. I book it, pay and then pay £20 to get a taxi there only to find it is overbooked and they’ve already turned away 4 other customers. It is a converted Georgian townhouse with a small number of rooms, so I’m sat in the only chair in a tiny lobby. I’m repeatedly calling LastMinute, and it has gone past midnight so there is no longer even a means to find another hotel (as you can’t search for availability for the previous night), and they tell me they don’t have a room. It takes me four calls and 47 minutes on the line to speak to Last Minute’s customer services, who conclude they can’t find an alternative room for me, and don’t see that as their responsibility. At 1.25am they suggest a room is available at the Taj St James Court hotel and they have reserved it for me. I call them, they have no rooms and have never heard of me. It is now 1.30am, and I am making plans to sleep in the bucket chair I am sitting in, in the hotel lobby, as I have nowhere else to go* and it is raining heavily. Eventually at 2am the hotel say that one guest has not checked in yet, and agree to take the gamble and let me use the room. I get less than four hours sleep for twice-the-price-I’d-normally-set-as-my-upper-limit-for-a-room, before having to head out to speak at the House of Lords.

Having given the talk I decided to complain to both Booking.com and LastMinute.com. The response from the former was “You got a refund for the apartment, so it’s all settled” and the latter offered “€20 as a goodwill gesture due to the 2 hour delay checking in”. No recognition of the fact the experience was traumatic, wasted 5 hours of my evening, cost me 3 extra taxis, and left me 200 miles from home without somewhere safe to sleep. I am faced with the realisation that trauma is subjective, and to many men hearing the tale I might have taken fright for no reason and brought the events that followed upon myself. I am forced to say “imagine if your Mum were in this situation” when explaining it to try to trigger sympathy. But nobody really cares. The apartment owner feels he has done his bit by refunding (and the website has conveniently blocked me from leaving a review). The men in the call centres were in another country, abstracted away from the problem. The customer service teams are seeing the facts in retrospect, not the feelings the experience generated, and are motivated to protect their brand rather than genuinely caring about me as a customer. The night manager of the hotel cared, because he met me in person, and saw I was upset. As a result he tried his best, but he wasn’t in a position that could resolve the problem.

And that’s where I finally reach the point. In a system where you book with a middleman who doesn’t actually provide the product you are paying for, nobody really feels accountable for the service you receive. And, to bring this round to being relevant to a wider point for health and social care, this model is being increasingly replicated in public services, where the NHS or local authority commission the service from another provider, who is assumed to be responsible. That split between online broker and real life provider, or the public sector split between purchaser and provider seems like a good model for each of those parties, as the purchaser delegates responsibility whilst fulfilling their obligations (or making a profit, in the case of online brokerage sites) with much reduced staffing and without having to invest in any tangible assets. The provider gains access to a wider market, rather than becoming obsolete. But somehow inevitably, as in my experience, the recipient of the service misses out in the middle, and finds out there is minimal quality control and an absence of clear lines of accountability when things go wrong or aren’t delivered as planned.

For example, there is a level of risk aversion that has made local authorities anxious about providing residential care placements, because of the prevalence of historic institutional abuse and the increasing awareness of child sexual exploitation and involvement in county lines (and the accompanying risk of compensation lawsuits). The result is a marketplace where private providers (many of them owned by international venture capital groups who pay minimal UK taxes) use unqualified, low-paid staff to care for some of the most complex and vulnerable young people in the UK, and it is hard for recipients or commissioners to distinguish them from provision that has different financial or delivery models. Likewise in health (and public transport) private providers cherry pick off the profitable services, whilst the public purse is left holding the can when they don’t deliver. There is a move to entrench this even further with the push towards Integrated Care Providers, where private organisations can manage the entire health and social care services for a particular region of the UK, in a way that is potentially unaccountable for its decisions and not subject to the rules for public sector organisations (like Freedom of Information requests, public consultation, or being subject to Judicial Enquiries if things go wrong, or even their statutory obligations). I think that might be a recipe for disaster, but then, I’m not a fan of corporations and the super-rich profiting from the suffering of the rest of us.

Update: Booking.com fed me some platitudes and agreed to reimburse my costs in relation to the apartment, but then failed to do so, whilst LastMinute.com have not yet replied, telling me they take 28 working days to respond to customer complaints that don’t accept the initial boilerplate response. I suspect that just like in health and social care, the (explicit or implicit) policy is to respond to those who kick up a fuss and have the potential to create negative publicity if things are not resolved, meaning that those who are devalued most by society have the least redress when things go wrong.

*call me a wuss, but I declined the option of having one bed in a bunk room in a hostel shared with 8-12 strangers

Reaching the summit?

For a long time, I’ve had a metaphor in my mind about how it feels to run a small business aiming to change children’s social care. The image is of me rolling a massive boulder up a hill. Progress is slow, it is hard work and I often find it tiring. Even when I rest I have to do so holding the rock in place. At times I feel like I might be reaching the summit, only to see that there is another climb ahead. I sometimes wonder why I’ve taken on this mammoth task, or whether my goals are even possible, but I am stubbornly determined that now I’m so far up the hill I don’t want to give it up. Maybe that is about sunk cost. But I’ve chipped off the worst of the bumps from the rock and got my rolling technique worked out, so I keep telling myself that if anyone can get this thing to the top of the hill, I can. Over the years of my journey I’ve tried to encourage other people to help me to push, so I am not bearing all the weight, but whilst I’ve had good company at times and plenty of encouragement, it has always seemed like the task is mine alone. That has been reinforced by numerous people telling me how I’m uniquely skilled at rock-rolling, even though I know that I was no better than many other people at the start of my journey. In fact I’m pretty sure anyone with some pretty basic skills who rolled a rock for this long could be standing in my shoes.

Of course, that bypasses the fact that I had to be willing to spend a lot of time on this, be resilient in the face of obstacles, and give up other easier opportunities to stick with it. And the fact I had the intellectual, social and personal characteristics to work out how to do this, choose a viable route and make improvements along the way. And it also omits to mention that had I known the real scope of the task would take me over a decade I might not have taken it on at the beginning. On the other hand, perhaps the fact it was difficult enough for nobody else to take on was why I did it. I think those who know me might point out it isn’t the first time I’ve jumped in at the deep end, and that I don’t do things in half measures. I don’t like taking the easy route in life, and if I set myself a challenge I like doing the task properly. I’ve always thought about what I can do to make the most impact, rather than to have the easiest life or earn the most money. I prefer to cut my own path, than to take one that is already well-trodden, and to find a way to enjoy the challenges of the journey.

So here I am, pushing my boulder and feeling like I’ve come quite a long way over the years. I might be deluding myself, but the gradient appears less steep these days. In fact, it feels tantalisingly close to reaching level ground, and I am starting to imagine what it might be like to roll my boulder down the other side of the hill. I’m trying not to be complacent that I’ve reached a point at which the boulder is stable enough not to roll back the way we came up, but people are starting to talk about how this boulder is not just on the level, but given one more push might gain enough momentum to create a landslide that will divert the river to irrigate the lands the local population need to farm. That would be beyond my wildest dreams. I mean, the motivation behind all this is to improve the lives of people who are having a tough time, but to think that it could have impact on the scale some people are now anticipating is mind-blowing. That would mean my big gamble of investing so much time and effort into this project could pay off in terms of impact. In a way that’s the great thing about indirect interventions – that they can make change that ripples out on a much bigger scale. In my boulder metaphor I’m trying to make change not by trying to teach them new farming skills one by one, but by trying to address some of the systemic barriers that impair their life chances, so that they have the opportunity to find their own ways to thrive.

So this blog is a marker of me standing at what I hope might be the top of the hill, and crossing my fingers the gaining momentum part happens. The mixture of hope and uncertainty is stressful to balance. When it’s a bit more concrete I’ll write a bit more, and hopefully I’ll not need a metaphor to couch my cautious optimism in, and can tell you about the actual project and the steps I’ve taken to progress it.