How do we know what we need: differentiating evidence based treatments for the public

I am interested in making a website to help direct people at the right kind of sources of support when they are hitting a block or feeling unhappy with their lives. So I started to look at what was out there. I found lots of small silos full of professional jargon that would help people to identify a counsellor, psychotherapist or psychologist if they knew that was what they needed. But I also found lots of sites that point people at all kinds of snake oil that has no evidence of efficacy at all. For example, Findatherapy.org lists the following categories as “therapies”:

Abdominal-Sacral Massage
Acupressure
Acupuncture
Alexander Technique
Allergy Therapy
Aromatherapy
Arts Therapy
Autogenic Training
Ayurveda
Biofeedback
Bioresonance Therapy
Body Stress Release
Bowen Technique
Chiropody
Chiropractic Treatment
Clinical Pilates
Cognitive Behavioural Therapy
Colon Hydrotherapy
Colour Therapy
Counselling
Craniosacral Therapy
Crystal Therapy
EMDR
Emmett Technique
Emotional Freedom Technique
Energy Medicine
Flower Essences Therapy
Foot Health
Havening Techniques
Healing
Herbal Medicine
Homeopathy
Homotoxicology
Hydrotherapy
Hydrotherm Massage
Hypnotherapy
Indian Head Massage
Kinesiology
Life Coaching
Manual Lymphatic Drainage
Massage Therapy
Matrix Reimprinting
Maya Abdominal Therapy
Meditation
Microsuction
Mindfulness
Myofascial Release
Naturopathy
NLP
Nutritional Therapy
Osteopathy
Physiotherapy
Pilates
Psych-K
Psychotherapy
Reflexology
Regression Therapy
Reiki
Relationship Therapy
Rolfing
Sex Therapy
Shiatsu
Speech Therapy
Sports Therapy
Structural Integration
Tension and Trauma Releasing
Thai Massage
Thought Field Therapy
Yoga Therapy
Zero Balancing

That’s a list of 70 “therapies” of which at least 40 are obvious quackery, and very few could be said to have any form of persuasive evidence base for efficacy*. But the practitioners of each are persuasive, and the websites use pseudoscientific rationales that might fool those who are not as cynical or conversant with the scientific method as we are. So how do the public know what kind of help to seek out? How does someone who is feeling miserable, has a job they hate, financial difficulties and problems in their relationship know whether to get financial advice, careers advice, life coaching or therapy? And if they pick “therapy” how do they know whether to get CBT, psychoanalysis, art-therapy or non-directive counselling? And how do they know whether to get it from a therapist or a psychologist or a counsellor or a mental health specialist or any of a hundred other job titles? And within psychology, how do they know when to seek a clinical psychologist, a health psychologist, a counselling psychologist or any of the job titles that the HCPC don’t register?

I think apart from word of mouth and google, they don’t. Most people ask their GP or their friends for recommendations, and then go with something available locally within their price range. They don’t read the NICE guidance or understand the various professional bodies or regulatory systems. They trust that they’ll get a gut feeling as to whether it is going to help or not from the first session, and most of that “gut feel” is probably based on personality and charisma, and whether or not they feel listened to. The decision then rests on whether the therapist wants to work with them and has the capacity to take them on, and the price they ask for (assuming the service is in the private domain rather than the NHS).

Even the NHS itself isn’t very consistent about evidence based practise. For example, the NHS still funds some homeopathy – possibly wasting up to £5million per year on this placebo treatment that is entirely without evidence or credible rationale. Likewise I’ve seen NHS therapists who have done training in models of therapy that are implausible and without evidence (eg ‘energy therapies’ like EFT). Perhaps this is why the majority of clients doubt the efficacy of talking therapies. Yet, despite this scepticism, most would prefer to try therapy than medication yet the use of psychotropic medications has risen much more rapidly than the use of psychological therapies.

So where do we draw the line? If we only deliver fully evaluated treatments and those where we understand exactly how they work, then the amount the NHS can do when it comes to therapy will be much more limited. Lots of therapeutic interventions in practise are derived from other models or by combining aspects of various models. This allows individualisation of care. Similarly, there are many therapies which are being developed that have promising methodologies and are tightly rooted in scientific knowledge, but have not themselves been subjected to RCTs that prove efficacy yet (eg DDP). And many RCTs seem far removed from actual clinical practise where clients have a variety of overlapping conditions and clinicians deviate substantially from the treatment manuals.

The other confounding factor is that when it comes to talk therapy, it turns out that the modality or adherence to the manual matters very little compared to the relationship between the therapist and client. It seems the key ingredients are listening to the client, genuinely caring about them, giving them hope that things could be different, and giving them the confidence to try doing things slightly differently. Whether we have years of training and follow the manual diligently or whether we are newly qualified and muddling through seems to make much less difference than we think. In fact, therapist variables are much more powerful in influencing outcomes than modality, and even than the difference between treatment and placebo. That is no surprise to me as I’ve personally benefited from physiotherapy that included acupuncture – despite having read studies that show it to be no more effective than ‘sham acupuncture’ where random locations are pricked with a cocktail stick!

In the paper I’ve linked above, Scott Miller argues persuasively that we don’t need to focus on understanding how therapy works, or in using the medical model to work out what works for whom with endless RCTs. He shows evidence that experts are defined by having deep domain-specific knowledge, earned by a process of gathering feedback and focusing on improvement. So he argues that in the same way, expert therapists are those who collect and learn from client feedback. So his answer to the issue of evidence-based practise is for us each to collect our own outcome data to show whether our work is effective according to our clients (and by comparison to other options), and to see if we can improve this by using simple ratings within each session that check we are working on the right stuff and that the client feels we understand them, and that the working relationship is good.

So what does this mean for the proliferation of made up therapies? Does it mean that we should leave the public to buy a placebo treatment if they so wish? Or does it mean we need to focus on the modality and evidence base after all? The ideal would obviously be better regulation of anyone purporting to provide therapy of any form, but given the HCPC remit doesn’t even include counselling and psychotherapy, I think we are far from this being the case. To my mind it throws down a gauntlet to those of us providing what we believe are effective and evidence based treatments to collect the outcome measures that demonstrate this is the case. If we are sure that what we offer is better than someone having an imaginary conversation with an imaginary ‘inner physician’ by feeling imaginary differences in the imaginary rhythm of an imaginary fluid on our scalps then surely we ought to be able to prove that?

And what does that mean for my idea of making a website to point people at helpful places to start a self-improvement journey? To me, it shows there is a clear need for simple and accessible ways to identify what might be useful and to allow the public to differentiate between sources of support that have evidence of efficacy, professional regulation, a credible rationale for what they do, reputable professional bodies and/or personal recommendations. Maybe such a website can be one contribution to the conversation, although I’ll need both allies and funding to get it to happen.

 

 

*I’d say EMDR, physiotherapy, speech therapy, CBT and some types of psychotherapy and counselling probably reach that bar. Mindfulness is probably getting there. Art therapy probably suits some people with some issues. Yoga, sports massage, pilates, osteopathy, meditation, life coaching and (controversially) even acupuncture probably have their place even though the evidence for them as therapy modalities is limited. Most of the rest are quackery.

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

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

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

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

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

Deadlock.

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

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

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

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

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

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

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

Why is there always a can of worms?

I’ve run http://www.clinpsy.org.uk for 9 years now, and built it up to 6900 members, 600,000 users and nearly 10 million page views per year. I’ve put enough hours into that site to add up to more than two years of full-time work, and I’m proud of what we’ve achieved. It is an informative, welcoming community that allows people to network and ask questions. It also levels the playing field of information and reduces the impact of personal connections within the early stages of the profession, and I hope that this will in the long-term act to increase diversity in the profession. Over those 9 years, members have written upwards of 135,000 posts on the forum, and our wiki of information and answers to frequently asked questions has been viewed millions of times, with some posts about preparing for interviews, the route to qualifying, formulation, writing a reflective journal, and transference proving particularly popular – the latter having been read over 115,000 times.

In all of that time we have had remarkably little need to intervene in the forum as moderators. We remove the occasional bit of spam, and we have sometimes anonymised posts in retrospect on the request of the author, and from time to time we have to explain to service users that this is not an appropriate place to ask for advice, but we rarely have to warn or ban forum users. I think the total to date is seven banned individuals and one banned organisation. Not bad when we’ve had 10,000+ sign-ups, and 135,000 posts! This is perhaps a reflection of our clear guidance about how we expect users to behave on the forum, and also of the large number of regulars who act as a more informal feedback loop. We also have quite a large number of qualified clinical psychologists who log into the forum regularly and often act to provide information and correct misconceptions. This is a very important function, as the pre-qualification arena can often become an anxiety-provoking echo chamber, where rumours are propagated and exaggerated without being confirmed or refuted. It also allows us to have a (hidden) peer consultation forum, which is a very good place to discuss concerns with peers in a safe environment in which every member is an HCPC registered clinical psychologist.

However,  the few times when intervention is necessary always tell an interesting story. And the strange thing is, that every single time somebody has been a persistent concern on the forum, this has opened a can of worms that makes us worried about wider ethical issues for the same individual. We had someone who was very unboundaried, and at times threatening to their colleagues and other members in the LiveChat space, and transpired to have caused concern with aggressive conduct in real life. We had a member who was somewhat grandiose and wanted to be a moderator, who attempted to delete and vandalise site content. They later had issues in their workplace, with a similar theme of acting beyond their level of competence. One poster lied to persuade successful applicants to share their applications for clinical training and plagiarised them, and when we identified them it transpired they had plagiarised site content into a publication without acknowledgement and had been unprofessional in numerous other ways. Another odd poster used the same username to post topless pictures on another website. And most recently we have had an organisation recurrently attempt to circumvent payment for advertising on the forum by signing up stooge accounts to promote their service, where it would appear that the appearance of an ethical non-profit organisation instead covers a profitable privately owned tour operator.

It has made me wonder whether ethics and professionalism are the kind of thing people have or they don’t, and that show in numerous domains of their life. Or, is the seeming anonymity of an internet forum a place where traits are exaggerated and played out. Either way, the association between inappropriate use of the forum and inappropriate professional behaviour in other domains seems too high to be a coincidence.

Yet the ethical and professional guidance for psychologists has little that applies in our context. We have had to work out our own boundaries amongst the moderating team (we now comprise ten qualified psychologists and a lay member, although many joined the team as APs or trainees). It makes me realise how much unique our position is, on the technological frontier, and how we are learning case by case. For example, we have had to interpret the balance between confidentiality and risk to apply to our unique setting. We settled on a position that is broadly consistent with what I’d do with clients in real life; we would identify and report a member if we felt they were at risk or presented a risk to others, but otherwise aim to respect the pseudo anonymity of using a posting ID, where only a minority of people choose to be identifiable as a specific professional, or in a way that could be recognised in their workplace. Likewise, we have learnt to log everything typed into our LiveChat space, so that we are able to review the usage of particular members, or read the content if a report is made of inappropriate behaviour. I’d like to think that we’ve reached a good place, and have always been transparent in how we behave. It has been an interesting process though, so I’m thinking of presenting some of the ethical dilemmas and our process at the CYPF conference later this year.

Reflecting back

I’ve been archiving the files for a lot of my past court work this week. I moved office base and I don’t want to be cluttering up my new space with lots of old case information I don’t need any more, when it can be securely stored and eventually shredded. So far I’ve boxed up the files for 115 family court cases for which I completed an assessment and wrote a report, leaving only records that have been updated since the start of 2013 in my filing cabinet. As I check that each of the newer cases has been completed and invoiced, I will put those into storage too, and use my filing space for other things. It is another step in letting go of my role as an expert witness, and the huge weight of responsibility and emotional demand that entails.

As I put each case away, I added the family names to an index in order that I could locate them if it is ever required. I am supposed to keep files for seven years, or until the child is 21, so they stay with me a long time. As I record the names I realise I can remember the stories of many of the families, and I wondered how they were doing now. There were lots of traumas in those stories, that I heard and described in my reports, and felt in my bones. Many parents whose own childhoods meant that they couldn’t parent in a safe and nurturing way. Many of them dealt a hand full of adversity, who had no resources to cope with the stresses of their chaotic lives. Over and over again I saw children who were harmed by the care they were given, both in the children I had to assess, and in the histories of their parents and grandparents. Themes repeating across two or more generations.

It has always felt terribly sad that in order to give their children a chance at a better life, the courts have to intervene in ways that further wound the parents. But an expert’s job is to advise on what is best for the child, and sadly that is often contradictory with what is in the best interest of their parent. And I hope that I have always kept what would be best for the child paramount in my thinking, but whilst holding some compassion for the other family members. I think about the cases where I didn’t do the story justice, and the courts made decisions that I didn’t agree with. I worry about the cases where greater experience or new knowledge from the literature would have given me a slightly different perspective. I think about times I was threatened, or parents refused to talk to me, or I was cross-examined for five hours straight. Then I remember a time when a parent I assessed approaching me after I gave evidence, and feeling wary she was going to be angry that I recommended her child was removed. Instead she said thank you to me. “You were the only person I’ve met in all this that was always honest with me, and understood how I got here. I can see why you said what you did about me, and I think you are right that he will do better being adopted”. I’m still blown away by that. What an amazing gift to give me at a time that was so painful for her. I hope that she got the therapy she needed to put that reflection, empathy and kindness into practise in her life, and get out of the run of destructive relationships that had dominated her life.

I put the files into the box and lock them away. I am glad to let them go. It isn’t just physical space they take up, but mental space. Being an expert witness for the family court is a tough job. The hourly rates might seem high, but there are other ways to earn the same without the emotional burden. There have been pros and cons for me. I’m a different person now than I was when I began doing that work. I’m more observant and analytical, better able to ask the right questions, to deal with uncertainties, and to spot inconsistencies and triangulate sources. There have been rewarding moments too. I have had a lot of positive feedback about the quality of my assessments and evidence, and thanks for the impact of my work. But I’m also more cynical and I’ve seen a very dark side to the world. I’m more aware of the risks, and of how prevalent maltreatment and poor care are, even in our supposedly developed nation. I think I’m less trusting of people as a result of doing this type of work, and my norms for what levels of problems require professional help have shifted towards the more severe end of the spectrum, making me less sympathetic to people who feel very disadvantaged by more minor difficulties. I’ve also acquired the bad habits of work that has a strong pattern of boom-and-bust in demand – working through the night to make deadlines, putting in 80 hour weeks to meet demand, and generally taking on too much to leave enough of myself for other tasks and life outside work. It has also shown me that I can be a total control freak about the standards of work contributed by other members of my team, because my own standards are meticulous and I take this type of work – that can change the course of people’s lives – particularly seriously.

Letting go of court work is difficult, because it glitters. There is always demand, and it is nice to feel needed and held in high regard by other professionals. It feels as if you have genuine influence in the legal process (and I generally hold the UK justice system and public law professionals in high regard). The pay, although much reduced since legal aid cuts, still seems somehow more attractive as an hourly rate than the reality should be (given you can’t charge for much of the time these cases actually take, nor for administrative support such as typing or arranging appointments, nor for venues or materials it actually works out to be less than I make from other activities like therapy, training or consulting). It also has the kind of attraction of rubber-necking at a car-crash, as the cases each have their own grim story, are more complex than most clinical cases seen in secondary and tertiary tiers of service provision, and are often both acute and chronic in nature. I find it hard to say no when my skills are needed. But I must learn to delegate this work to others, or to decline, because I want to have my time and emotional energy back for other things.

And so it is good to archive my files, and to catch up with my invoicing, and to clear the decks of old ways of working to allow myself space for the new. It feels like putting down rocks I have been carrying for a long time….