The limits of child psychiatry

This morning I read an article which I mostly agreed with, but contained a brief snippet that irritated me. Sean Duggan in the Guardian rightly points out that mental health services are suffering from a crisis of under-investment. It’s all very well for politicians to talk about “parity of esteem” for mental health with physical health, but that simply isn’t translating into services on the ground. Services are being slashed to the bone, with vulnerable people being left to sink or swim, and sadly, too many them sink and drown. Duggan is entirely correct to say that this needs to be reversed.

Here’s the bit that irritated me.

Our children’s mental health cannot be left to chance. One child in 10 has a mental health problem. Three quarters never receive any treatment or support. Yet children with poor mental health go on to become adults with poor mental health. And those with the most common childhood mental health problem, conduct disorder, can look forward to dramatically harder, poorer and shorter lives than their classmates. We need to take action now to create a whole system of mental health support for children that boosts resilience and protects those who become unwell. [emphasis added]

Just what do I do all day in CAMHS?

 

 

 

 

 

Last year there was a picture meme going around on the theme of What people think I do/What I actually do. After I made some sarcastic remarks about the meme on Facebook, I was challenged to come up with one for my own role as a nurse therapist in Child and Adolescent Mental Health Services (CAMHS). Being one never to ignore a thrown-down gauntlet, I went on a trawl through Google Images, and promptly knocked together the following illustration.

 

 

A few days ago, I noticed that this graphic (which I’d probably devoted an entire half-hour to creating) was being passed around on Twitter. Since that’s the case, perhaps I should elaborate on it a little, and explain the different images. that I selected

What adult mental health services think I do.

Okay, it’s probably an exaggeration to suggest they think I work with Teletubbies. Even so, there is something of a disconnect between adult services and CAMHS. Our core client groups are palpably different, and so too are our ways of working.

We don’t work a lot with people who have psychosis. Despite the American fad for diagnosing “pediatric bipolar disorder” (which even the Americans have been backtracking on in the last couple of years), conditions such as schizophrenia and bipolar disorder are rare in children. I see maybe one psychotic young person a year, usually in their mid-to-late teens. I do work with young people who hear voices, but it tends to be at the level of pseudohallucinations rather than outright hallucinations.

One unfortunate consequence of this is that on those odd occasions when a psychotic child comes to a CAMHS team, they may not be as geared up to supporting them as an adult service. Conversely, adult services often aren’t as geared up towards treatment of eating disorders as CAMHS.

Another difference is that people with depression and anxiety are more likely to be seen in primary care during adulthood, and in secondary care during childhood and adolescence.

These difference tend to result in all kinds of problems when a young person turns 18. They often discover that they’re either transitioning to a very different kind of service, or they simply aren’t being offered a service at all.

What Peter Breggin thinks I do.

It is true that use of psychiatric medication has risen in the UK in recent years, and I’d be lying if I said I’m entirely comfortable with all aspects of that. Despite this increase, it’s still fair to say that CAMHS are much more cautious in their use of medication than either their American counterparts or their colleagues in adult services.

I could count on one hand the number of medications I’m likely to come across in any given working day. If a young person is prescribed an antidepressant, 9 times out of 10 it’s likely to be fluoxetine, not least because it’s the only one licenced for under-18s. For ADHD there’s some relatively new drugs on the market, such as lisdexamfetamine aka Elvanse, but they’re not being prescribed much. The great bulk of young people with ADHD are still prescribed good old-fashioned methylphenidate (you know it as Ritalin, but it’s far more likely to be issued in various slow-release preparations such as Concerta XL, Medikinet XL or Equasym XL) with a smaller number taking atomoxetine aka Strattera. For sleep problems there’s melatonin. For highly agitated children there’s some use of low-dose antipsychotics (this has usually been risperidone, though there’s increasing use of aripiprazole instead) – and it’s this use of antipsychotics that I tend to feel uncomfortable about, even at low doses.

Outside of the higher-tier services dealing with deeply-unwell young people, that’s pretty much all the medication you’ll see. Despite the controversies about dubious use of psychiatric medications in childhood (by no means all of which are unjustified) a high proportion of the kids I work with are on no medication at all.

It’s also worth pointing out that I’ve worked with quite a few kids whose lives have been significantly improved through some judicious, well-monitored use of fluoxetine or methylphenidate.

What the Church of Scientology thinks I do.

All I have to say to this one is…If their argument is that psychiatry is superstition masquerading as therapy, and it’s all just a big scam to control people and take their money….Well, that’s a bit rich coming from the Church of Scientology.

What society thinks I do.

This image illustrates one of my major bugbears about what mental health services are perceived to be for. There’s a whole plethora of language devoted to it. “Oppositional defiant disorder.” “Conduct disorder.” “Behavioural problems.” “He has an anger problem.” “He needs anger management.” “She has difficulties with impulse control.”

All of which translates as, “Please make this child behave themselves.”

There seems to be an idea out there that all of society’s problems – unruly classrooms, chaotic family lifestyles, juvenile delinqency, crime – can be therapied away with six sessions of anger management. I can see why it would be an attractive idea to politicians, civil servants, parents, teachers, GPs, social workers – but it ain’t true. The psychiatric profession hasn’t helped itself in this regard by coming up with silly non-illnesses such as “oppositional defiant disorder”, but I don’t think mental health services should be there to get children to behave themselves, and I don’t think we generally do a good job when we try. If anything we can make the problem worse by trying to distil a wider systemic or social difficulty into a “condition” that the child has “got”. Hence why many CAMHS teams simply don’t accept referrals for ODD or conduct disorder.

What I think I do.

It would be fair to say I’ve put in quite a lot of training and studying into what I think I do. I’ve attended training on cognitive-behaviour therapy, as well as enhanced CBT for eating disorders. I’m currently paying out of my own pocket for some postgraduate study in systemic and family therapy. Over the years I’ve ploughed through a reading list of the great and the good. John Bowlby. Carl Rogers. RD Laing. Carl Jung. Paul Watzlawick.

What I actually do.

What do I do? Listen. Talk. Try to be a listener, an ally, a facilitator of reflection and problem-solving. Someone who works to build a relationship with young people and their families, and at times to help them build their relationship with each other.

When one puts it like that, perhaps what I do isn’t that complicated after all.

 

What’s in a Word? Patients, Clients, Service Users…

Part of my job is to mentor student nurses. This week I had a look at the recently-revised competency portfolio that the students have to bring on placement. This is a hefty document about the size of the Yellow Pages, which lists all the skills students have to learn with me, and which I need to sign off to say they’ve learned. It’s very detailed and long, with a dizzying array of competencies in it. I’d challenge anyone who thinks a nursing degree is an easy option to read through it and then say so. However, there was one thing that struck me about the competencies.

They didn’t make a single use of the word “patient”.

Don’t get me wrong, it isn’t that the competencies weren’t aware that nurses work with people, but they were constantly referred to as “service users” and “clients”. The word “patient” was conspicuous by its absence. Apparently nurses don’t have patients.

There seems to be a view out there in mental health that “service user” and “client” are good and “patient” is bad. I don’t buy it. I’m not saying there aren’t people who don’t like being called patients, but I’ve also come across people with mental health problems who loathe being called service users or clients. Besides, anyone who’s ever been to the dentist is technically a patient.

The wording on the student competencies is particularly ironic because I work in Wales. Recently the Welsh Assembly Goverment passed the Mental Health Measure, a very progressive piece of legislation that enshrines certain rights for people receiving a mental health service into Welsh law. It gives, for example, the right to have a care and treatment plan that’s formed collaboratively between patients and staff, and a right for people who’ve been in secondary care to self-refer back to services. It’s a very good piece of law aimed at putting the person using the service at its centre. Even so, the term used in Mental Health Measure documentation is “relevant patient” not client or service user.

I suspect there isn’t a “right” or “wrong” answer when it comes to whether one should use patient, client or service user. It all depends not only on what those words mean, but also what people take them to mean. For example, when we talk about “health” some people would take that to mean a fairly narrow, medical model of diagnosis and treatment. However, if you go by the World Health Organisation’s definition of health…

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

….then that’s a much broader concept.

It’s also worth pointing out that the meanings of words can be changed, often due to a conscious effort by those to whom they apply. A good example of this comes from the recent #mentalpatient furore that erupted on Twitter and into the mainstream news. The Asda website was discovered to have a “mental patient” fancy dress costume (which Asda has since removed and apologised for) on its online store.

 

The response of various Twitter users was to post pictures of themselves in their own “mental patient costumes.”

As well as patient, client and service user, the term “expert by lived experience” has also been bandied about in mental health debates. I recently asked Twitter users what they thought of this particular wording, and got a high number of responses which I’ve Storified here. The answers varied wildly. Some loved it, some hated it, and quite a few people gave nuanced answers somewhere in between.

I’m not sure that I have an opinion as to which is the “right” wording to use (and as I’ve said, I’m convinced there even is a right answer). I’d hope that whatever wording is used, people are treated with dignity, respect and in a collaborative way that upholds their rights and wishes.

 

 

 

Does ADHD exist?

One of the joys of working in child and adolescent mental health services (CAMHS) is that I regularly get asked whether I think ADHD exists. It’s a topic that has two polarised camps. In one camp you get those who think it’s an attempt to medicate away all kinds of family and social problems, giving bad parents a handy excuse while lining the wallets of Big Pharma. In the other camp you have those who insist that those voices are simply pillshaming a debilitating but treatable condition.

I’m going to give my answer to that question, and it’s slightly more complicated than either pole. Quite possibly I might wind up sounding like Bill Clinton’s notorious comment that, “It depends what the meaning of the word ‘is’ is.”

To start off, what do we mean when we say that a child (or adult, since adult diagnoses are on the increase) has “got ADHD”? Well, the first thing to remember is that ADHD, as with most psychiatric diagnoses, is a descriptive statement about a collection of thoughts, feelings and behaviours that somebody happens to be displaying. There’s not a blood test or a scan for ADHD (or depression, or psychosis, or post-traumatic stress disorder etc etc).

At the risk of simplifying somewhat, ADHD is defined by three core symptoms: inattention, hyperactivity and impulsivity. If you’re inattentive, hyperactive and impulsive, you’ve “got ADHD.” If you don’t have those three things, you “haven’t got ADHD”. What that doesn’t tell you is why somebody is inattentive, hyperactive and impulsive.

Back in 2010 there was a big media hoo-hah after a Lancet paper was widely reported as having found a “gene for ADHD.” The media’s eye was particularly caught by a line in the abstract.

Our findings provide genetic evidence of an increased rate of large CNVs in individuals with ADHD and suggest that ADHD is not purely a social construct.

I don’t pretend to be an expert on genetics, but there’s a handy deconstruction of the paper by Neuroskeptic here. The upshot of it is that this particular piece of genetic evidence is likely only to account for 7% of individuals with ADHD. Fine, but what about the other 93%?

I guess some researchers would be keen to say “other genes”. But if ADHD is essentially a description of symptoms, why do we need to think either all or none of it is down to genetics?

We don’t assume that say, anxiety is caused by one single thing, be it biological or environmental. I see a lot of anxious children due to psychosocial events. I also worked a while back with an anxious child who turned out to have abnormal hormone levels. When the hormones corrected themselves, the anxiety disappeared.

I’m not an ADHD nurse specialist – I’m something of a CAMHS jack-of-all-trades – but I run a regular nurse-led ADHD clinic. In that there are children who, for no apparent reason, seem to have been hyperactive, inattentive and impulsive from birth, and for those children a genetic component to their behaviour certainly seems plausible. There are also children who developed those symptoms after a head injury.

And yes, there are children who have a strong history of being subjected to various psychological, family and social stresses.

A while back I was running one of my ADHD clinics. For confidentiality reasons I won’t go into the details of the cases. However, what I will say is that after reading the notes I discovered that every child booked into my clinic that morning had either been sexually abused or exposed to domestic violence during early infancy. A lot of people outside psychiatry and psychology tend to assume that this would be unlikely to affect the child later on, because they wouldn’t remember those very early experiences. It’s true that these children probably don’t consciously remember what happened to them. However, at that very early age their fight-or-flight responses would have been going off like the clappers, right at the time when they would be starting to form those early attachment bonds that go on to develop the basis of somebody’s personality.

What would a child be like if they developed an attachment style based on an aroused attunement to perceived danger? Jumpy? Fidgety? Finding it hard to sit still and focus on a schoolbook?

What childhood condition does that sound like, eh?

But here’s the thing. At every one of those appointments that morning, both the child and the parents agreed that he or she was benefiting from the medication. I don’t mean in a simple, “He’s behaving himself and not causing trouble” kind of way. As in they were coping better with the school day, able to progress in their education, able to make and sustain friendships. They were able to get on with being a child.

This isn’t entirely surprising when you think about the medication involved. There’s various ADHD medications on sale: atomoxetine (aka Strattera), lisdexamfetamine (aka Elvanse) but by far the most commonly-used is methylphenidate. You all know it by its more famous name Ritalin, but that’s a brand name one doesn’t often see these days. It’s more likely to be prescribed in various slow-release preparations – Equasym, Concerta, Medikinet – or as generic methylphenidate.

Methylphenidate is basically a performance-enhancing drug. One child psychiatrist (not one I work with) told me that when parents tell him that their child’s school grades have gone up since starting methylphenidate, he thinks back to his time at university, when he took speed to help with his exam revision. Methylphenidate is a stimulant that helps people to concentrate and stay on task, and can provide symptom relief to those who have trouble with that, regardless of why they have trouble with it.

Throughout human history, people have used pharmacological products to improve their functioning on a personal, social or cultural level. Anyone who says otherwise simply doesn’t own enough Beatles albums. Little Johnny might be taking methylphenidate. His Mum is being prescribed fluoxetine to help her cope with the drudgery of her life. Dad is medicating himself from the stress of work with some diluted liquid ethanol from his local pharmaceutical supplier at Thresher’s. Meanwhile, Johnny’s teenage sister deals with her anger at Dad by smoking some herbal tetrahydrocannabinol that she obtains from an amateur, unlicensed pharmacist. Along the way she discovers it has some interesting effects on her art A level coursework. As the song goes, it’s a chemical world.

 

 

 
If that sounds like a cynical way to put it, I should point out that methylphenidate is, unlike some of those other products mentioned, relatively safe. Not completely safe, but then no medication is. Even so, as long as there’s regular monitoring of fairly basic things such as height, weight, pulse and blood pressure the risks are low and manageable. Often those risks are much lower than simply allowing a child’s educational, emotional and social development to carry on being disrupted by whatever is causing them to become inattentive, hyperactive and impulsive.

So, to go back to the question, “Does ADHD exist?” If by that do we mean that children can become hyperactive, inattentive and impulsive and that this can be corrected with medication, then yes, it does exist.

If by that do we mean it’s a single condition with one single cause that affects every child who has it, I’d say not.

To paraphrase President Clinton, I suppose it depends on what we mean by “exists”.

Of course, this is not how the speakers would put it at a drug company-sponsored ADHD conference.

Unfit to Care: Dinosaurs and Bad Apples

[Guest post by Connor Kinsella]

At great risk to the reputation what has always been one of the more respected organs of the health and social care blogosphere, I’ve been invited to contribute to the Not So Big Society blog. This may turn out to be about as welcome as a knighthood for Piers Morgan, but before I outstay my welcome I want to draw attention to an issue which, in public at least, remains remarkably under-discussed. It’s more than just the Elephant in the Room. It’s a bloody great dinosaur crouching on the mantelpiece belching loudly while everyone sits on the sofa wondering what’s happened to Patch the family Labrador.

 

I come to this subject on the back of a previous NSBS post. In Nursing Degrees aren’t the Problem, Zarathustra looks at poor care and the perceived erosion of compassion within the nursing profession, often attributed to the elevation of nurse training to degree and diploma level. The ‘too posh to wash’ argument is, as Zarathustra points out, thoroughly flawed on a number of counts, but one highly significant issue raised in the piece is the seeming impotence of practice tutors, mentors and academic supervisors to weed out the sort of students who really shouldn’t be let loose on an ant farm let alone caring for the sick and the vulnerable.

 

Failures in care can and do arise from the sort of systemic factors highlighted so ably by this blog among many others. Poor or non-existent resources, savage cuts and the sort of target-obsessed management twonks who punctuate every other sentence with ‘going forward’ are never going to further the cause of good quality care. But many years of mental health nursing and social care training delivery have left what is (to me at least) one undeniable conclusion. There are far too many individual workers who are simply not up to the task of working professionally and appropriately with vulnerable people.

 

And I’m not talking about the headline makers: the Shipmans and Allitts, nor the ‘care’ staff of Winterbourne View. I’m looking toward the day-to-day awfulness of the sort of workers who, as Zarathustra points out, could and should have been rooted out at an early stage long before they have gone on to cause misery to every patient, client, service user and colleague that has the misfortune to cross their path.

 

If you’re reading this as a health and social care professional, you probably know who they are. The ones who attract enough complaint letters to wallpaper a small room. The ones who know better than decades of random-controlled trials and decide that the holistic tree-bark infusion they read about on the internet is so-oooo much better at treating depression than “any of that CBT and medication nonsense.” The ones who think of clinical supervision as a) a tool of Satan or b) a personal affront to their professionalism and years of experience. And the ones who seem to think communication skills are the ability to post snaps of their buttocks on Facebook but who can talk to neither colleague nor service user without causing them to run sobbing to the nearest cupboard.

 

In the first (and ultimately overlong) draft of this post I embarked on a trip down memory lane to describe my fantastically dysfunctional intake of student Registered Mental Nurses way back in the early 1980s. This was as ghastly a bunch of ne’er do wells, inadequates, love addicts, perverts, substance misusers and pure textbook psychopaths as were ever let loose on the mentally ill.

 

But this was a skewed sample. The old institutions of the sort where old-timers like me first cut our mental health teeth were replete with flawed characters, and my cohort of student drama queens and underwear sniffers (yes, really) went barely noticed among the general monstrosity of a Victorian asylum. But as time went on and my clinical and training career took me to all corners of the health and social care universe, I really did begin to wonder what it is about this most demanding of fields that attracts so many unsuitable staff. Whether it’s damaged people seeking self-help, taking solace in working with those even more fragile than themselves or (more worryingly) meeting a need for power and control over society’s most vulnerable, this is perhaps a research study yet to be carried out. For even the power of Athens and Google fails to yield much in the way of answers.

 

Not that having the odd psychological peccadillo is always a harbinger of bad care. Some I have worked with have used difficult life experiences to very appropriate and professional effect without compromising those professional boundaries which are so often crossed by the wayward.

 

This is where we return to Zarathustra’s post. In particular a paper cited there (forgive the repetition) which I read at the author’s recommendation and can highly recommend again to anyone reading this, particularly if you have any responsibility for mentoring or supervising students, probationers or junior staff.

 

Kathleen Duffy’s 2003 Failure to Fail paper is the ‘go to’ qualitative study of factors influencing the assessment of nursing students’ clinical competence. Or more to the point, incompetence. If you’ve ever wondered how the care equivalent of Dr Mengele can somehow manage to hop from one disastrous placement to another without sanction, the all too familiar quotes from mentors and lecturers have the sort of chilling resonance that will ring bells for any care professional who has experienced student placements featuring laziness, disinterest, lack of empathy and even personal hostility and threats but have been too ‘nice’, too ‘conscientious’ or in some cases, even too scared to criticise or fail a student. This is indeed an eyebrow raising paper.

 

But sooner or later we come back to the big picture. As we’ve seen only too graphically at Winterbourne View and Mid-Staffordshire, dysfunctional environments may not be the genesis of dysfunctional staff but can certainly provide an environment where the bad apples can fester and even flourish.

 

In one NHS Trust I worked for, it was common for poorly performing clinical and/or managerial staff to be shuffled off to a desk, given a laptop and assigned to some ‘special project’ with a Mickey Mouse job title and the licence to carry on irritating and hindering people to their heart’s content, only on a less damaging scale than they achieved as manager of a ward.

 

On the other hand, the more successful, therapeutic environments I’ve come across over the years do things a little differently. Strong leadership is demonstrated by canny recruitment, proper and functional supervision, and a robust approach to casting aside those who haven’t the competence or attitude to care.

 

It is of course difficult to simply rid ourselves who aren’t performing to the required standard. For starters, what is the required standard? We can easily identify the member of staff who is consistently late or doesn’t turn up at all, but how do we tribunal-proof the getting shot of that care assistant with the interpersonal skills of a sofa, or has an attitude to superiors leaving managers checking the underside of their cars for bombs?

 

Please don’t go having nightmares about bad apples or even that dinosaur on the mantelpiece, but make no mistake. They’re out there. 

Moving On and Looking Back

Forgive me for the slightly self-absorbed post. Blogging by its nature can be the epitome of self-absorption but I attempted to write with a look to the wider world, particularly in the sector I know best, social care. I put this in the past tense as this will be the last post I write.

When I started writing, I had the voice of a social worker and AMHP (Approved Mental Health Professional) in a Community Mental Health Team. I was trying find that voice amid the policy and processes that we found ourselves, as practitioners, caught up in and trying to extend outward some of the frustrations and observations garnered from the ‘frontline’. It felt and it feels like that policy happens from afar, away from the homes I visited, the wards we attended, this was my world and it felt like a completely different world from the one defined by officials in the Department of Health when they remember ‘social care’ is a part of their remit.

I believe wholeheartedly in social work as a profession and social workers as professionals but I became frustrated at the lack of professional leadership. There is no doubt that the last year of my professional life has been one of the most challenging. I’ve worked in social care for 20 years (gulp – I look younger, I promise!) as anyone can imagine, I’ve seen many changes in that time. ‘Reconfigurations’ were nothing new to me. Working with change and in organisations that change frequently is one of my fortes but the most recent one was the most painful by far. While parts of my job, I loved – particularly when I was able to work with and alongside individuals and families and walk with them through some of those moments of crisis – working in an organisation and delivering services which were being ripped to pieces was difficult. Defending organisational decisions became impossible. The fight was still there inside me to promote and present a better way of working and honest interactions with everyone who needed our service, I saw waiting lists grow and discharges of people who I felt would benefit from more support. I saw the effect of the programme of cuts in the NHS in a very visceral way. I was and am very lucky. I have been able to walk away. I find myself in a job that excites and interests me and presents many new challenges. The same ease with which one can move on cannot be said for those who are reliant on the support of social care services and I remain acutely aware of my privilege in being able to.

I found a different (but related) job and thought I’d be able to continue writing with the passion I never stopped having but I can’t. The situation has changed and the voices need to be heard from the frontline I’ve stepped back from. I have become the person I resented for so many years. As a social worker, I always had a hint of scorn for those who took the ‘desk jobs’ and moved away from the direct work with people who use the services we provide but I’ve become one of those people.

In defending myself to the old me, I’d say that changing the world can happen in different ways. I am no less committed to the same ethical standards of making the world of health and social care better for those who use services. I am seeing that social work and social care happens in many different places. Is it an attempt at justifying my decision to leave social work behind? Yes, probably but that’s something I’m reflecting on a great deal at the moment.

I have been disillusioned by the time I spent working in the statutory sector as a social worker. As a parting salvo as I head off into the sunset, I want to reflect on a couple of themes that revolve around social care at the moment.

Kneejerk funding decisions lead to more expense, both in terms of quality of life and finance in the longer term. I’ve seen panic cuts both at a national and local level. The problem with panic cuts is that the things that are easily destroyed cannot be built back up in the ‘good times’.

‘Choice and control’ the buzzwords of change ring very hollow to me now as I saw in both the NHS and the local authority, the way that data and information is manipulated to meet performance targets that are meaningless to people who use services. Choice is one of the most nefarious words in the sector in my opinion. ‘Choice’ is very much defined by what organisations allow to be chosen and the confidence, communication skills, advocacy support of the individual doing the ‘choosing’. I railed against processes that favoured ‘he who shouts the loudest’ but it was to no avail. Presented by the government as a panacea of positivity, I have seen the downside of ‘choice’. It has been the creation of a two-tier service in adult social care that provides those who are able to choose with fantastic opportunities but those who may not have the capacity/support to choose are left lagging behind, in poorer, oft forgotten services. With funding drying up and fewer third sector organisations able to pick up the slack, there is a massive void of support which often falls on family and friends – the ‘informal’ support networks that the government still feel able to criticise.

Dementia care is a particular interest of mine. Professionally I have worked in the area for a number of years. Dementia is moving further forward in terms of government policy making and the so-called ‘dementia challenge’ which is currently trying to increase diagnosis rates. That’s all well and good and I won’t enter that conversation but I will say this. In order for dementia to be better understood by the public it has to be better understood by the government agencies who are supposed to be providing the information. There is a horrendous lack of information about the role that supportive social care services play in improving the quality of life for people with dementia. As I worked alongside a ‘memory clinic’ which had been decimated by cuts, I laughed hollowly at the words of the government ministers about increasing diagnosis rates in primary care and for hospital inpatients. See my first point about panic cuts and lack of cohesion. Reading some of the Department of Health missives you’d be at a loss to think they ever discussed any of their plans with anyone with a current social care background. Perhaps the new Chief Social Worker (or one of them anyway) will provide a sticking plaster to this but it’s very apparent at the moment that there is no cohesive, current social care voice in the government department and it makes some of their policies woeful. The level of ignorance even of government ministers who clearly haven’t been briefed by people who understand social care would be embarrassing if it weren’t desperately sad.

Lastly about Social Work itself. I retain my social work registration and will now until 2014 at the very least. I suspect far beyond that as I don’t want to give up my registration. I am very proud to be and to have been a social worker. The ethics and values of the profession can really shine a light and guide many of our colleagues in allied professions and we shouldn’t be shy of realising our own worth. Often I hear social workers talk of status and comparing ourselves unfavourably to nurses, teachers, doctors, psychologists etc. We shouldn’t need to constantly compare. We have a fine profession with its own knowledge base, standards and codes. Having worked in a multi-disciplinary mental health team (and I think being an AMHP helped with this as we are known to be a stubborn and independently minded bunch) I never felt anything but an equal to the other professionals I worked alongside (and challenged – psychiatrists – I’m talking to you ;)). We do need to ‘sell ourselves’ more and we can’t rely on waiting for ‘good press coverage’. Do the job, however hard, with the ethics and values at the heart and remember why we are there – it isn’t to promote organisational will but to walk alongside and guide. Sometimes there are difficult, coercive decisions to be made but reference to values and ethics become all the more important there. The nature of a job that sometimes has a coercive function is that ‘hearts and minds’ will never be particularly straightforward. I didn’t become a social worker to make friends or to swan in adulation of my ‘goodness’. I went into it because I felt it gave me more opportunities to make a positive difference in someone’s life. More often than not, certainly over the last couple of years, it became more about saying what wasn’t possible than what was – but if I could deliver that with as much humanity and empathy and transparency as possible, it could be a start.

Many thanks to Zarathustra for this space and for the support he has offered to me.

And thanks to everyone for reading, commenting and responding over the last year or so. My reasons for stopping are work-related but not in a bad way. I just think my voice has changed now and it’s important that those ‘on the ground’ have the way left open to them to find it. I won’t say I’ll never write again, I may at some point in the future, but if I do it won’t be anonymously I will, though continue to knock around on Twitter I expect!

Goodbye

Beyond Winterbourne

Yesterday, the Department of Health published ‘Transforming Care : A national response to Winterbourne View Hospital’ (PDF)  the ‘final report’ about learning and developments following the case which highlighted, via a BBC Panorama documentary, the systematic abuse which was embedded in the running of a private hospital for people with learning disabilities ‘with a stated purpose of providing assessment, treatment and rehabilitation’.

The failings were found not only in operation of the hospital  but in a complicated and confused health and social care system which on the one hand seems to have been moving away from ‘institutionalisation’ over the past few decades while on the other hand commissioning services which embed institutionalisation and powerlessness into failing and very expensive systems’. The case of Winterbourne View also highlighted the failure of the regulator, the CQC, to respond to information provided by a whistle-blower and of local authorities and commissioning NHS Trusts to actually quality assure the services which are being provided.

Another related report which was also published yesterday (PDF)  came from Family Mosaic – a housing association which provides supported living services which highlights its own failings in terms of poor care and proactively looks at new policies and ways to turn this around. In a way, the Family Mosaic document – is a testament to an organisation which wants to learn pre-emptively and the organisation should be applauded for producing it.

I want to look at some of the issues in both these reports as I think they are  linked,.

Lessons from Winterbourne View

The introduction to the report sets the context of Winterbourne View Hospital – a placement for 24 adults with learning disabilities. The report explains that 48 patients had been referred there since its opening in 2006. The average cost of a placement was £3500 per week and

‘13 were referred by commissioners within 20 miles

12 were referred by commissioners within 20-40miles

14 were referred by commissioners between 40-120 miles

9 were referred by commissioners over 120 miles’

14 separate English NHS commissioning bodies had acquired places there plus some unspecified (presumably a problem with exact data) from Wales..

You’d think that maybe there’d be quite a lot of quality assurance going on with all that money streaming in.

Both the Serious Case Review and this report pick up on the amount of lost opportunities in terms of communication between agencies – between commissioners and between primary and secondary health care services. There has been a lot of confusion – not least from the Secretary of State about the position of Winterbourne View but that fact that it was a hospital and received detained patients (rather than a care home which it has been incorrectly yet frequently referred to) means some of the responsibilities and monitoring processes would be different.

The police, hospitals, commissioning bodies, local authority (who was responsible for safeguarding alerts), CQC Inspectors and Mental Health Act Commissioners seemed to have failed to ‘join the dots’.

While the Serious Case Review goes into detail about what went wrong, this report is more interesting in terms of what is going to happen next.

What is happening as a result

Immediately the CQC changed some of the systems for pulling in whistleblowing information and started an inspection programme for learning disabilities settings.

There was to be (and is to be) a focus on more local settings where possible as distance from family and familiar settings is crucial. Where it is not possible the placing authority should remain in close contact and plan moves back to local areas as soon as possible. A long term distant placement is not an option.

Hospital the report states, which should be obvious I guess, is not a long term placement and should only be used for the minimum time necessary.

If it is necessary at all.

The report talks about the need to listen to people with learning disabilities and their advocates as ‘not listening’ was a big failure. It’s important that listening is beyond hearing what someone might say as well – particularly if there are communication difficulties. It’s important that those who don’t have families to advocate for them are heard as well. Fortunately the report touches on the need for strong advocacy services to be developed.

What will happen

The Department of Health has set a timetable for June 2014 for a ‘rapid reduction in the number of people with challenging behaviour in hospitals or large scale residential care’.  These numbers will be monitored by the DoH.

I am interested when the report talks about ‘people with challenging behaviour’ if they are just referring to people with learning disabilities. My hope is that they aren’t and this will apply equality to those people who have more advanced dementias and may display behaviours which could be interpreted as challenging due to communication difficulties

There is an emphasis on ‘personal care plans’ being developed which partly shows the failing of the personalisation agenda to date as it has completely passed by swathes of people with the highest needs. Maybe there’ll be some attempt to ‘catch up’ now. Let’s hope.

Interesting to that the report nudges the CQC to consider the ‘model of care’ delivered in terms of regulation and compliance. .Personally I’d see that meaning that these larger institutions inherently carry a ‘higher risk’ but it will be interesting to see how that develops.

Interesting that the report focuses (rightly) on the involvement of ‘families and self advocates’ in driving quality and change. My only comment would be a plea for the Department of Health not to forget those people who have very high support needs and who are, due to their cognitive impairments, not able to ‘self-advocate’ and who do not have family advocates. There is a gap here and often these people are at high risk of abuse due to the lack of ‘supporting voices’. There must be a way for formal advocacy to speak on their behalf.

Strengthening Corporate Responsibility

The report also looks at the organisational failings of Castlebeck and the lack of responsibility taken by the organisation itself.  The report urges the CQC to take more enforcement action organisationally if necessary and there has been a move to appoint ‘Corporate Compliance Managers’ – presumably to hold large organisations to account.  The Department of Health will also be looking at the way the CQC are able to ensure the ‘fit and proper person; test which is applied to registration can apply to organisations – whether a board member is nominated to be responsible. However the powers do not exist in legislation for the CQC to check more than one appointed person. This is something that strays into the ‘to be decided’ part of the action plan but no doubt will be an interesting space to watch.

Improving Practice

The report highlights good practice in the hope it will be modelled  more broadly. A voluntary register for people working in adult social care is being mooted. Personally I favoured full regulation of the social care workforce but that’s likely to be too costly to organisations who are working on minimum wage payments to many staff whom they don’t necessarily want to professionalise even though the work is crucial. The low status of social care work is inherent in the attitudes of employing organisations. Training is important though and so is modelling of good care. While compassion doesn’t cost, environments in which it can flourish are better sustained when staff aren’t under constant pressure and are treated, themselves, with respect.

Whistleblowing mechanisms are mentioned and tightened where they haven’t been already.

Particularly interesting to me as a (now) ex-AMHP and BIA was mention of the Mental Health Act and Mental Capacity Act. The report confirms that 73% of the people are Winterbourne View were detained under the Mental Health Act. They should have had statutory protections of appeals and access to IMHAs. It also makes one wonder under what grounds the other 27% were being detained. Was it –really- ‘informal’? Were DoLs ever used? If not, were there any questions asked by those visiting about why or why not?

One of the most interesting ‘key actions’ to me is that

‘The Department of Health will work with CQC to agree how best to raise awareness of and ensure compliance with Deprivation of Liberty Safeguards (DoLs) provisions to protect individuals and their human rights and to report by Spring 2014.

I have a particular interest in DoLs – their use and their lack of use so will certainly be keeping a VERY close eye on this. I’ll try not to be cynical. I’ll really try.

Family Mosaic’s proactive report

Family Mosaic’s ‘No Going Back’ report (PDF) unfortunately has faded into second place in this post but it almost deserves more than one post to itself however the themes link in so tightly with the Winterbourne View Review.

I’d recommend that both reports are read together and it is commendable that Family Mosaic as a provider organisation have looked proactively at how they can do better in terms of challenging institutionalisation and poor practice among their own staff.

The report looks at the history of ‘deinstitutionalisation’ and the move to Community Care principles but also where the failings have crept back and cultures where care may be delivered in different settings but where the quality has been in question and abuse has resulted.

The organisation provides examples of poor and indeed, abusive care in its own settings to look at how to improve and what to offer in terms of building a better culture of delivery of care.

One of the interesting aspects they consider is the lack of ‘whistleblowing’ so that staff who might witness poor care and who have been on the requisite training may not feel they are in a position to report it or may not recognise it when they are involved in the delivery.

The report focuses on aims and action points for the organisation as a whole including a more open policy towards whistleblowers and those who raise concerns internally.

It explains clearly basic expectations for delivery of services to service users by staff and all in all, it is a fantastic piece of work by Family Mosaic who should be commended.

Conclusion

These two documents offer a way forward for delivery of care and attitudes towards those who need care. I wish we had a Winterbourne View type document and review of care for older people, particularly older people with dementia and hopefully when the document refers to ‘people with challenging behaviour (a term I don’t really like to be honest’ it isn’t only referring to those in learning disabilities settings – however I fear it is.  We need to have a wholesale reappraisal of large institutional settings for care delivery – be they hospitals for people with learning disabilities or 90 bedded nursing homes for people with dementia. Age/cognitive ability/family involvement/means to self-advocacy cannot determine ones right to dignified and high quality care.

Family Mosaic have presented a good model that moves beyond care for those with learning disabilities – I hope more providers take notice and take a proactive response.

However, there will be costs and if the government is truly intent on building better services across the board and for all sectors, there has to be an understanding that the money will have to come from somewhere.

I hope it will happen. The right noises are being made. I just hope the results are equally satisfying.

What will the new DSM-5 mean for us Brits?

There was a slightly provocative headline to this Guardian article a couple of days ago. “Asperger’s syndrome dropped from psychiatrists’ handbook the DSM”. This refers to the DSM-5, the forthcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be published by the American Psychiatric Association. Though actually Asperger’s isn’t so much being “dropped” as merged into one catch-all diagnosis of Autistic Spectrum Disorder.

This left me wondering about how the new DSM will affect mental health services over here.

I suspect it initially won’t affect us a great deal in Blighty. Psychiatrists in the UK usually base their diagnostic categories on the World Health Organisation’s ICD-10 rather than the American DSM. Also it’s important to note that diagnostic categories are not the only thing that affects what mental health services will or won’t do. There may be a diagnosis listed for, say, “oppositional defiant disorder” in the DSM and ICD-10, but my Child and Adolescent Mental Health Service doesn’t accept referrals for it. Such problems are considered the realm of school strategies, parent training and youth offending services, not child psychiatry. Those who say that psychiatry is out to medicalise all forms of human behaviour can take comfort that in our corner we wouldn’t be able to do that even if we wanted to. We don’t have the time or resources.

But it is true that what happens in America has a tendency to filter down to the rest of us, though not always. Pediatric bipolar disorder, for example, never really took off outside the United States.

I’m in two minds about the idea of merging Asperger’s into ASD. On one level I can see a rationale for it. It’s really not clear that Aspergers is a distinct condition from ASD. I also can’t think of anything that we do differently as a result of saying that a child has Asperger’s rather than ASD.

On another level, I wonder what effect this might have on the neurodiversity community and the sense of identity that some people have fostered. Also, I’m slightly concerned about the effect this might have, given that we’re referring to a condition that causes people to have difficulty coping with change.

This article on NHS Choices gives a few of the other changes. A new category coming in is “disruptive mood dysregulation disorder”; basically an angry child. The rationale given is an eyebrow-raising one, “to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children”. In other words, the whole fad for pediatric bipolar disorder got so out of control Stateside that they had to create a diagnostic category to accept that some children get angry a lot. By comparison, I’ve been in CAMHS for five years and I’ve never met a pre-pubescent child with a diagnosis of bipolar disorder. Neuroskeptic has an excellent critique here, in which he points out that it basically describes the same thing as oppositional defiant disorder.

My guess is we won’t be accepting referrals for disruptive mood dysregulation disorder either.

There’s also some diagnoses going into the DSM-5 under the category of “conditions that require further research before their consideration as formal disorders.” Such as “internet use gaming disorder.” Here’s a musical number from some precontemplative addicts.

I doubt we’d be accepting referrals for that either, other than to write back suggesting the parents unplug the X-Box for a while.

There’s also some proposed categories that aren’t going to make it into the DSM-5, such as:

parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’

Fair enough, because including that would be really silly.

There’s probably a lot more to be said about the DSM-5, particularly about the new dimensional approach to assessing personality disorders, but I’ve limited myself here to discussing it from a CAMHS perspective.

Dementia Friends

The Department of Health has, today, launched the Dementia Friends scheme.

It’s a lovely scheme to promote greater awareness of Dementia by recruiting an army of  volunteers. These volunteers will be trained to have an ‘understanding of dementia’  As the website itself says, if you become a ‘Dementia Friend’

We’ll equip you with an understanding of dementia and how you can help, and the rest is down to you. We want Dementia Friends in every community – in every hospital ward, post office, place of worship, and on every street. Our target is to reach a million people by 2015, and we’re confident we’ll not only meet this target but will beat it

Wow, that’s great. Really it is. I’m (for once) not being sarcastic. I work with a lot of people with dementia and having to explain it to them and their family members, I see the fear and lack of understanding and I wish that there were a greater knowledge in dementia in the community and this seems to fit the bill.  In my social work training course, over two years, I had one lecture on older people – I can’t even remember if dementia was mentioned. That’s plain wrong. It needs to be a meaningful part of every training programme and on many courses.

First I thought Dementia Friends would be like a massive new befriending scheme for isolated people without family and friends and excluded by community  as the site says

Alzheimer’s Society research found that nearly two thirds of people with dementia feel lonely, and almost half reported losing friends following their diagnosis. With one in three people over 65 developing dementia, it’s vital we change this picture.

But reading more I see its  about encouraging people who are Dementia Friends not to abandon those of their family, friends and social circles who have dementia and  not to ‘drop’ them as the illness progresses. Which is also a very good goal.

I guess I just see a disproportionate amount of people who don’t have family/friends/social networks or maybe I’m seeing them after their networks have abandoned them.

Early Diagnosis

One of the aims of this scheme is apparently to encourage earlier diagnosis of dementia. Again, a very laudable aim. The Guardian previews Cameron’s announcement

Cameron will say: “Through the Dementia Friends project, we will for the first time make sure a million people know how to spot those telltale signs and provide support. There is still a long way to go in fighting the disease, but together we can improve the lives of millions.”

…

The scheme will provide free coaching sessions on how to spot the signs of dementia and provide support to people with the condition.

Each Friend will be awarded a special “Forget-me-Not” badge once they have completed their training, so that they can be easily identified as being able to assist people with dementia.

So when the dementia (and remember there are lots of causes for forgetfulness and confusion other than ‘dementia’)  is ‘spotted’, I imagine the hope is that the Dementia Friend will encourage the person they have potentially ‘spotted’ to get screened.

All good. Again back to the Guardian which says

The rate of successful diagnosis is expected to double from 42% at present to 80% – a target set by Cameron earlier this year when he launched his challenge.

Healthcare professionals will also be required to ask all patients aged between 65 and 74 about their memory as part of their standard health check. Simple diagnostic tests will be expected to be done on site, cutting waits that at present can be as long as 18 months.

Post Diagnosis Support

So we are able to identify and diagnose dementia earlier. Really that’s great. It allows people to have more time to adjust and to make plans regarding their needs in the future. We have more people who are aware of the needs of people with dementia in their own social circles and prepared, we hope, to be more tolerant and supportive.

However we can’t allow the happy clappy Department of Health talk to get away with the fact that dementia services and provisions have been slashed to bare bones. There is little left to provide to people who have early diagnoses, particularly if they don’t have that family support because the resources just are not there.

I’m all for early diagnosis if people want that (and not everyone does but that’s an individual thing) but if this is the same government that has launched a savage attack on local authority social care services which were barely fit for purpose at the best of times then I can’t help but be cynical about some of these provisions.

I’d like to see more research and provision of different types of care both in residential settings and at home so we aren’t at the mercy of large private companies creating ever larger residential and nursing homes in suburbs where the cost of property is low that house up to 80+ residents with dementia in places that are difficult for family to access without cars.

I’d like to see some of this ‘dementia challenge’ money put into allowing local authority assessments to build cost of non-directed advocacy into support planning – that would make an immediate change in the quality of life of those with dementia.

I’d like to see some honesty around the poor quality care for people with dementia currently in social care and hospital settings. Maybe some of that money could be invested in paying care staff better and more importantly improving training.

Big Society

This is very much a ‘big society’ volunteer type role. Good luck for those who participate. I’ll likely join up myself but lets not forget that this means distribution of volunteers may not be equal and those who have no community as such will not have the same benefit of access to these who volunteer.

So a good initiative and well done but lets not forget that if the government aim is to increase diagnosis, they have to be prepared to put more money into improving what happens and what support is available after diagnosis.

The ‘Red Tape Challenge’ does Health and Social Care

We all knew it would come in time. This wonderful government idea to slash all that awful ‘red tape’ that stops people doing what the government otherwise would stop them doing finally arrives at Health and Social Care.

I had a brief look at some of the provisions detailed as ‘red tape’ for which the government is asking for comment and quite frankly, I am horrified.

What I might see as essential protections, they are presenting as ‘red tape’ and asking for feedback about potential abolition.

This is a consultation so it’s really important that as many people as possible to contribute and in the joyful spirit of openness, the website allows up to see the live commenting on others. I wonder how those with less technological access or knowledge are able to comment quite so openly about some of the provisions up in the air.

But openness and accessibility only seems to go so far and for the government departments responsible they seem to be after whipping up public distaste of ‘red tape’ although actually, we really do need to move from the idea that bureaucracy is necessarily bad.

There is a separate website entirely to focus on ‘ regulatory enforcement’ and where it might be unnecessary.I feel robust regulation (and thus, enforcement which has to follow as a result) is essential. The big problem with social care and health regulation since the CQC was established was the ‘light touch’ type approach which had been taken and the ‘back office’ regulation and not enough enforcement.  I really really hope that it is not cut back further. I want to see more regulation and stronger enforcement, not less of it.

But back to the ‘red tape challenge’. I want to share some of the provisions ‘up for discussion’ that the government has classed as ‘red tape’.  I’m solely concentrating on what is up under ‘Quality of Care and Mental Health Regulations’ as I felt that was the area I knew best. The numbers refer to the list of these ever so demanding provisions in the Excel list here.

39 is that oh so burdensome (!!!) regulation that requires the Care Quality Commission ‘to monitor and access for monitoring purposes, people who are deprived of their liberty’ and necessity to report this to the Department of Health.

40 is a nice one about requiring people ‘who assess Deprivation of Liberty’ to have an enhanced CRB.  – clearly unnecessary because.. er.. people who lack capacity and may potentially be subject to DoLs aren’t likely to be vulnerable, right? I think there’s an issue about effectiveness of CRBs in general but a bit worrying that that’s considered ‘red tape’.

43 is much more worrying as it is the obvious ‘red tape’ which introduced IMCAs as a safeguard for ‘those who have noone to speak on their behalf’ making them mandatory in abuse and review situations. RED TAPE??

55 is another ‘good one’ which ensures that IMHAs are ‘of an adequate standard’ because clearly, that is unnecessary (!?!)

Obviously there are many many more – I’ve just, for reasons of time, picked out a few that interest me personally but do have a look at them and COMMENT.

I’m frankly insulted that some of these provisions are even considered to be ‘red tape’  but as there’s an open consultation, it’s important that as many people as possible who know and understand the implications of removing them, to contribute.

If the government want to know what ‘red tape’ is in terms of adding unnecessary burdens, I’ll gladly explain about how useful (or not) it is to spend time recording how much time I spend on ‘smoking cessation’ work or time spent ‘clustering’ people according to diagnosis into tiny little tick boxes which are, clinically, unhelpful in order to get the ‘Payment by Results’ systems which will never work well, up and running. THAT’S red tape.

But it seems to be red tape that potentially infringes on the rights of those who might be least able to protect their own that they are classing as ‘red tape’ here.

Contribute to the consultation and let’s tell them how important some of these provisions are.

Oh, and someone should tell the Department of Health that the GSCC doesn’t exist anymore as they seem to have forgotten on their Professional Standards page (published this week!) but we know how much interest the Department of Health has in social work and social care so shouldn’t really be surprised.

Pic by Martin Deutsch@Flickr