Child & Adolescent Mental Health – Time to overhaul?

I’m writing this on the day that news has carried stories around mental health services for children and young people, following a report by CentreForum, a think tank “that develops evidence-based research to influence both national debate and policy making”, with a particular focus for “those in disadvantaged circumstances”.

The news headlines and the report itself make stark and worrying reading. Factors such 23% of referred young people being turned away, threshold criteria which apparently require repeated suicidal presentations to receive support, “Anorexia” access being based on BMI… all of these will raise concerns for anyone with an interest in the emotional well-being of young people in the UK (surely, therefore, everyone in the UK?).

As you can see from my overview, I want to use this blog to offer critical appraisal of mainstream reports around distress and “mental health”. My initial thoughts about this report are that it represents the incorporation of a broad church of expertise from various public bodies and professions – including two leading clinical psychologists, which I’m always going to like! Unfortunately, it doesn’t make clear how much use has been made of Experts by Experience in the process (either young people or parents), a process which should increasingly be a feature of any mental health design or evaluation process in my – and many other people’s – opinion. Interestingly, after my critique last week of Labour’s supposed “Basic Questions”, this report provides a clear example of how complex the questions are that need to be asked, and the complex ways in which data needs to be gathered and interrogated in order to answer them appropriately. I’m not going to go on now to seek more critique of their methods, as I think they seem good enough for the intended purposes.

So my critique this week? It is more of a query and reflection around the way our nation approaches significant distress in young people. This is part of the wider debate which is present around how we conceptualise distress as “mental illness” in mainstream perceptions, but I think that the place of children, young people and families in this discourse will benefit from further emphasis.

The report starts by describing prevalence. The data on prevalence is taken from the most widely used source, a 2004 report by the Office for National Statistics with a sample of nearly 8,000 children identified for further investigation through questionnaire and interviews with themselves, their families, and/or their teachers. Now, there is clearly value to this data – however, we need to be clear that it is offered unambiguously from a “Mental Disorder” perspective. The figure of 1 in ten is based on there being ten per cent of children who would be diagnosed with a “Mental Disorder” based on a psychiatric classification systems which suggests that difficulties in children can be “clinically determined”. As with any classification process, this requires that there is a cut-off point for decision-making. Practically speaking, this means that there is a nominal point at which one child’s distress levels are below the threshold (they don’t have a disorder), whilst another child’s are above (they do have a disorder).

Across all psychiatric diagnoses, there is a critique frequently offered which suggests that there is insufficient evidence to make such confident categorisations; the sceptics amongst us suggest that the practice persists for a number of socio-political reasons, but that the foundational science does not support this process as fully as mainstream medicine and media would have us believe. Many people have made better arguments than I about this, and so I will not waste your time by trying to re-hash them in a less eloquent way here. However, let me emphasise that the very developmental nature of childhood and adolescence makes this life-stage an even more “messy” area in which we could or should be seeking to determine a psychiatric diagnosis.

None of this means that I am undermining the extreme difficulties that face our young people. I have worked with a number of families where the level of suffering related to their psychological experiences (thoughts, feelings, behaviours, relationships, and so on) can only be described as extreme, and can be incredibly damaging in a number of ways, including physically. However, that does not mean that I believe we need to apply a health model to understanding these difficulties.

Why is this relevant to the awful stories of access described in Centre Forum’s report? Because I believe that part of the problem is a result of a system design, not JUST resources. The fact that we discuss childhood distress in terms of “Health”, “Disorder”, and “Illness” leads inevitably to the fact that categorical decisions are required at individual levels, and also within services. CAMHS stands for Child and Adolescent Mental Health services, and the primary provider is the NHS, the National Health Service. Immediately, we have to apply paradigms which make sense of the severe distress as a health-related issue, and both explicitly and implicitly this means that inappropriate health-based processes are going to be used.

Threshold criteria based on categorical clinical levels may well be appropriate for some medication decisions made in order to influence blood levels of certain chemicals in clearly physiological conditions (I don’t know for sure, you’d have to ask a medic, but that’s my understanding of many aspects biomedical science…). When you take psychological distress, a human experience where (despite the huge research bias towards biomedical perspectives, also highlighted in the report) we have a very limited understanding of underlying physiological process, the idea of threshold criteria becomes far less meaningful or appropriate. However, situated as they are within health services, the dedicated support for young people experiencing significant distress inevitably adopts this approach. This is also notable within Centre Forum, whose commission was led by Norman Lamb, an MP for whom I have a great deal of respect in terms of his drive for equality and his work around mental health whilst in government, but who nevertheless frames childhood distress in terms of “mental illness”.

Within a CAMHS service, there are normally many clinicians who would not choose this health framework as their primary explanation for the distress they are seeking to alleviate, but their situation within health services leads inevitably to an approach which is determined within this framework. Even my professional identity – a clinical psychologist – holds health-related meanings which don’t entirely fit with the formulation-based philosophy that is primarily held by practicing clinical psychologists. This is not quite the right time to discuss further the kinds of professional dynamics that such a position can bring, but I don’t think many would disagree with the platitude of “it’s complicated”, and maybe I’ll explore that further another time. The problem is that the system in its current form holds access to many who would prefer not to be acting on an illness model behind thresholds that require criteria based on an illness model. Arguably, it also means that early intervention - so widely recognised as the most important process - is not supported in development or application by the expertise of some who could bring incredible value to the process because they have to sit behind threshold curtains in the more expensive “specialist services”; it is my firm belief that the value for money of breaking down some of these barriers would come in bringing a wider level of expertise to the processes of many services and systems. I would take this a step further, and argue that we need to explore an entirely different system for offering appropriate support, one which separates from the health paradigm. This doesn’t mean either losing the benefits of health input, nor am I suggesting that medication is never useful, even for children and young people; however, we can move away from needing a full health-based paradigm to understand distress without losing the ways in which such interventions can be useful.

I am not the first person to suggest that an entirely different approach is needed for understanding and supporting people in distress. Primarily, I believe that the biomedicalisation of distress contributes to communities being disempowered from feeling they are able to address needs which they might otherwise approach. In addition, I subscribe to the movement which suggests that in fact, socioploitical factors such as austerity are driving factors in increasing people’s distress (and the original 2004 report notes significant socio-economic differences within “disorder” prevalence that would reflect this). As such, I do believe that the main process by which we will see improvement for the young people whose suffering is so vividly described in reports such as this one are a wholesale change in society based on compassion, driving or driven by a government which begins to employ compassion related to our nation’s well-being as a more important measure than apparent “economic success”.

I am a pragmatist. Despite all of my critique of psychiatric diagnosis, I have been part of the team which set up a dedicated “CAMHS Eating Disorders” service, because I had good research and experiential reasons to believe that a specialist service would certainly bring more significant benefit to some people in extremely difficult situations – the fact that we had to use this terminology seemed a small philosophical price to pay for ensuring appropriate resources were targeted in the right way. Sitting now slightly on the outside of CAMHS but still closely aligned, I do see that there is not going to be an overnight change whereby young people’s suffering is managed by an entirely different system. In that context, it is vital that the current system is resourced and changed in a manner which will allow for much more support from a group of professionals who – in my experience – are passionate and dedicated about alleviating young people’s suffering, be they nurses, social workers, psychiatrists, psychologists, teachers, or any of the other professions working tirelessly in this field. However, I fear that whilst it is always within a health service framework, there will always be a mismatch, and no matter how much money goes this way, it will not quite meet the needs that the young people and families of our country so desperately need. An overhaul is needed.

Asking the right questions

On Thursday, I read an article on Huffington Post about the questions that Labour’s Shadow Minister for Mental Health, Luciana Berger, was asking of the government regarding monitoring in mental health within the UK. I tweeted my “partial agreement” with these questions – Ms Berger responded to query why it was only partial, and I then discovered the limits of Twitter’s 140 character limit – some things are just too nuanced to explain in that forum, and so I thought I would take this opportunity to give more detail.

I write offering a perspective both as an experienced clinician with 13 years of service in NHS mental health services, and also as a social scientist lecturing and researching in psychology. In this last role particularly, I spend a lot of time with students planning their own research projects, and arguably the most important part of that process occurs in the earliest meetings when we are designing the research question. These have to be important/interesting enough to be worth investigating - how else will the student keep going through the long hours of data collection, analysis, and write up ahead of them? – but also justified by existing evidence, and defined enough to be investigable.

And how is this relevant to Labour’s 30 questions? At risk of being a pedant, I would say that if you are using a position of responsibility such as a shadow minister to ask a government what they know about any circumstances, their response will need to be based on data collection and analysis, and therefore has clear analogies to the scientific process; as such, the questions asked need to have the same parameters as you would expect to see in research questions undertaken within social sciences. On this basis, I believe that Ms Berger’s questions are undoubtedly important, but in some cases are not defined enough to be answered, and in other senses do not fit alongside the evidence of what we already know.

However, I also described some of her questions as “unreasonable”. Surely, if we want a government to plan proper responses to complex difficulties, it is only reasonable for them to gather all available information, right? Well, this leads on from the fact that a good research question will also imply the methods by which the evidence to answer that question will be gathered. Some of the supposed “basic facts” which Labour are saying the government don’t know are actually the kind of information that is incredibly complex to gather properly; with that complexity comes a high investment of resource – time and money. And any time and money invested into the gathering of data takes time and money away from actually working with the problem that it is meant to be measuring. So, service design at either a national (e.g. governmental) level of a local (e.g. NHS Trust) has to strike a balance between the resources devoted to monitoring and those devoted to actually serving. 

In my own field of practice and research (see this paper), the prime example is how hard it is to systematically collect routine measurement of clinical outcome within Child and Adolescent Mental Health services – a tide which is possibly turning with the wider adoption of CYP-IAPT, but the context of CORC shows that it has taken since 2002 to begin to see this development in a process which I am sure many outside of the NHS would assume was a “basic question”. I am in no way suggesting that there should be no monitoring of mental health issues, nor that it is currently sufficiently well managed, but I am suggesting that some of the questions which are suggested would be taking the balance the wrong way.

So, the five questions highlighted in the Huffington Post article:

1.        How many men and women have taken their own lives in the first year after the death of their child?

Not being my own area of expertise, this was a question to which I originally responded with a “Who & How [is going to do this monitoring in order to be able to answer this question]?” query; Ms Berger then responded by sharing a link to the MBRACCE site. A great link, and when you explore this site you can see that it is a research project dedicated to monitoring maternal well-being and all issues related to antenatal and perinatal health. It is from their most recent report that Ms Berger had noted the high level of perinatal mental death attributed to maternal suicide.

You can see that I am not criticising the importance of this issue. However, what this site and the reports demonstrate is that due to the complex processes required to actually answer the question around suicide, a dedicated research organisation with highly skilled individuals are engaged in exacting communications with NHS Trusts around the country to ensure that the data is correctly recorded and accurately reported. The nature of this kind of information cannot be managed by a single database to which all NHS Trusts report; it requires sensitive and skilled collection. As such, the expectation that someone employed within DoH can – at the click of a button – answer the question posed is, in my opinion, “unreasonable”.

Furthermore, the very fact that Ms Berger signposted me to this report then confused me as to why she had asked the question in the first place, or at least with regard to mothers. Clearly, MBRACCE are engaged in answering the question (for mothers specifically). The NPEU at Oxford which runs MBRACCE are rightly funded by research money which is ultimately centrally provided by government for allocation through national funding bodies. Therefore, the responsibility to monitor this question is – in fact – apparently being met already. Ms Berger might want to know how the government is going to act on the finding, but I do not see how anymore can be done to monitor the information than is already being done – not without a huge and costly wholesale redesign of data collection and sharing within the NHS, which we have already seen has major problems with the controversies around NHS England’s care.data programme.

Sadly, the question around paternal deaths following child birth will be even more difficult to answer. I have tried to visualise the way in which such data could be collated, and I can only see either health records such as care.data or a systematic organisation of coroners’ reports; again, hugely complex systems, and the problem with any huge and all-encompassing system is that there are so many kinds of data which would be validly collected, incorporating the data that would answer this question may not happen.

2.        How many people diagnosed with a mental health condition received a custodial sentence in each of the last five years?

For me, this question was one that I could more easily imagine being answered, and I was initially surprised that she’d had no reply. However, again, as I imagined the actual process by which such information could be collated, you need to have a question about mental health diagnosis recorded by everyone who receives a custodial sentence. I would assume (hope) that every new prisoner has a medical check at some level upon imprisonment, and that mental health would be covered within this – however, to answer the question of numbers of new prisoners with a psychiatric diagnosis, would this not also require wholesale sharing of healthcare records? Not my own field, so I may be unaware of processes already used here, but again, even though I thought this was a reasonable question initially, I begin to doubt it. If the process is not already underway, then governments can use the most recent research to identify the trends in this figure when it comes to service design; arguably, a robust piece of research which looks at a representative sample will be a more cost-efficient process to answer the question in a way which will allow appropriate governmental decision-making.

3.        How many children have died in psychiatric in-patient units each year since 2010?

This is now very close to my professional heart, and it was a greater surprise to see this question unanswered. However, I do wonder whether there is a process by which the data is available, just not directly through DoH. I know that every NHS Trust will have an incident reporting process, and I am fairly confident that serious incidents of this nature are undoubtedly taken to a risk register at a regional level at least. I would expect that these registers are collated nationally – I don’t know by whom (these kinds of details are not often processed by those of us working at the frontline of services), though I would be expecting the it might be NHS England. If so, it may be that NHS England could answer the question, even if DoH cannot. It is an interesting question, though, to wonder why central government would not want to prioritise their monitoring of it in being able to drive the strategic direction of NHS England’s work in such an area; broadly, I share Ms Berger’s concern that this question was unanswered.

4.        How many physical injuries have been caused to mental health patients by the use of restraint since 2010?

Again, I would expect that there is a central resource to this, because such incidents would be reported in every NHS Trust through the system noted above. Again, I broadly share Ms Berger’s concern that this was unanswered.

5.        How many school children have parents with a mental illness?

My response to this is that it is another highly complex question, not at all “basic”. Furthermore, whether it is something that should be being monitored begins to sit a little uneasily for me.

Firstly, let’s acknowledge the reference to “Mental Illness” and move on – I do not use the term myself because it does not sit with the psychological understanding of human distress which I prefer to use as my framework, but there are much better people than I for making this argument (see for example Lucy Johnstone, or the recent open letter to the BBC from Peter Kinderman co-signed by many), and I don’t want to distract from my main point with regard to asking this question.

So who would normally collect this information? Schools? Well how would they know - there is no obligation for anyone to share with them psychiatric diagnoses of parents as a standard practice. And even if there was, how would they record the information? As a fellow school governor, Ms Berger will know how overwhelmed school admin staff regularly are. GPs? Again, I refer you back to the problems with care.data, the expectations of confidentiality in the NHS, and the lack of any statutory obligation to report a psychiatric diagnosis when a professional knows that someone is a parent.

But more importantly, I suspect that many people might be worried by my query about whether it should be monitored, so let me explain. My concern here is around the implications and stigma this could create. Ms Berger rightly says that “not identifying and supporting children of a parent with mental illness can have really negative consequences”; however, it doesn’t mean that having a parent with a psychiatric diagnosis (which I will treat as synonymous with “having a mental illness”) will always have negative consequences, but if you know that it is going to be monitored immediately, how much less likely would you be to seek support? People experiencing major levels of distress need to feel able to share their difficulties and seek support openly and without fear of stigma, supported to recognise that this distress is situated within a societal context (e.g. drives for austerity) which increases the likelihood of it occurring in many of us. To be answered, Ms Berger’s question would require everyone who visit’s their GP and is prescribed anti-depressants to be screened for parental responsibilities and this information shared; arguably, enhancing the sense of societal oppression, not reducing it. It risks reinforcing the idea that experiencing major distress becomes a reason for society to trust you less as a parent, which can only reinforce your distress.

There are processes which become employed when children are effected by their parent’s distress; Early Help Assessment Forms (EHAFs, which I wrongly termed as CAFs in my Tweet, old terminology, apologies) are employed by many councils following on from central recommendations about Working Together to Safeguard Children, and - along with data from Child in Need and Child Protection processes - these might capture data which could be used to answer a question regarding the number of schoolchildren for whom parental mental health is having an impact on their welfare; however, again, this would rely on a central system to codify and report such information from these forms, and the system simply doesn’t exist.

So again, this question relates to an area which requires strong research conducted within a representative sample to provide an indication from which governmental policy should be driven – it is not, in my opinion, an area that should be subject to ongoing monitoring for both resource-based and moral reasons.

So if not these, then what?

Firstly, let me be clear in one aspect of praise. Reviewing her website, Ms Berger is rightly proud of her party for creating the first Shadow Minister for Mental Health role, and that this role sits in the shadow cabinet. This is just one example of the way in which Labour are clearly strongly pushing the mental health improvement agenda (Jeremy Corbyn’s decision to attend a mental health rally over other potential media events upon his election being another). I was interested to review Alastair Burt’s governmental profile and realise how many things that his ministerial post requires alongside mental health, raising the question of how much prioritisation is really possible. Noting that I am not a member of any political party at the time of writing, I will also offer the sceptics view that many things are easier to say in opposition that do in power, but nevertheless, I think those of us interested in seeing a much needed improvement in the nation’s mental health have good reason to be pleased by aspects of Labour’s position in opposition.

However, my position on this “30 Unanswered Questions” campaign is (in case you hadn’t already gathered!) lukewarm at best. For one thing, I fear that the very fact of offering 30 questions, one a day, will actually dilute the strength of the message. How many news outlets will be reporting the question on the 28^th April compared with the coverage on 1^st April? Many less I suspect. But will the 28^th question be any less important? Philosophically speaking, I expect not. So I think this strategy will prove to be less impactful than Labour were probably hoping.

Secondly, the fact that the questions are potentially the wrong ones will risk undermining the message that more needs to be done about mental health services. I will not be the only person to think that these are not basic questions, and I think it risks looking like political point-scoring with cheap shots, rather than an example of a strong opposition holding a government to account.

I don’t know how they decided on these particular questions, and I don’t know the process by which they pursued them with the government. I’m going to take a slightly cynical punt on the possibility that the number 30 was chosen to happily coincide with a month-long campaign. However, I think that a stronger campaign would have been one which demonstrated leadership through using the position in opposition to harness the multiple resources available from like-minded organisations and individuals to ensure that the pressure being put on the government is most clearly linked to widely agreed priorities. An open goal comes in the form of the Mental Health Taskforce, which as an independent body chaired by a mental health charity and an expert-by-experience has produced a report with 58 recommendations for government. As a mental health clinician and academic – and a UK citizen with plenty of personal experience of the effects of distress in the lives of those who both experience it and support them – I want to see now how the opposition will lead the way in holding the government to account against these recommendations. I want to see processes which continue to engage with experts-by-experience (a.k.a “patients”, “service-users”), clinicians, and academics in the field. I want to know that the conversation in parliament is occurring at a cross-party level – there are too-few scientists within parliament, their skills need to be drawn upon when understanding how to approach ostensibly research questions; in particular, Westminster is now blessed with the first (to my knowledge) clinical psychology MP – Lisa Cameron – who could be an incredible asset in Labour’s approach to driving mental health reform, provided they are able to set aside the political differences in other fields to form a coherent front in regard to mental health (and I own my bias here, I do not know Lisa personally at all, I’m taking an assumption that her professional background places her fantastically to raise mental health issues in parliament).

This might well all be happening. But if it is, then I owe no apology for not knowing about it, because by choosing to instead shout about 30 “basic questions” which are not basic, Labour have missed the opportunity to give us all confidence that the necessary reforms will happen. And if it is not happening, then the strategy should have been focussed on creating these kinds of links and processes, not on a media campaign which will be most likely a flash in the pan, and at most an irritating itch that will be easily ignored and forgotten by the government.