4% have a structured assessment approach when diagnosing BPD

Next month I’ve got a first appointment with the consultant psychiatrist in my mental health trust’s personality disorder pathway. I’m trying to decide whether to go and if I do go what I would like out of it.
A proper assessment of my difficulties is the obvious want.

I had asked the lady on the phone when setting the appointment (this was an appointment, the time and date of which they wished to set without any reference to my pre-existing obligations – I am like really, am I that powerless in this whole process?) what would happen at this meeting.

She said, ‘oh the psychiatrist will talk to you, see what support you need and so on’. I replied, ‘oh, ok thanks, and what about the assessment process, when and how does that take place?’. A pregnant pause ensued. She said, ‘your appointment is with the personality disorder team.’

There was another pause, presumably for me to fill in the gap with the unsaid, ‘you’re on the PD pathway ergo you’ve got BPD so what are you talking about an assessment?’ and say thanks for the appointment and put the phone down.
Instead I said, ‘oh yes I know but as far as I’m aware I’ve not had an assessment or a diagnosis so I was wondering how and when that occurred.’ Another pause. She then repeated, ‘oh the psychiatrist will talk to you, see what support you need and then take it from there.’ I gave up. Said thanks for the appointment and put the phone down.

Not because I was satisfied with her equivocation but because I didn’t want a record of ‘patient argumentative on phone’ – she must have BPD.

I’m aware of the debate around the PD as a valid construct, a label, a gateway to stigma and service exclusion. There are many good reasons for keeping well away from a (possibility of) diagnosis.

However, my GP notes already record the dreaded ‘traits of BPD’ so that ship has sailed.

Further, I’m in the fortunate position to be able to pay for treatment but I don’t want to piss away £10,000 per year and a few years of my life pursuing the wrong type of treatment.

I also already have a diagnosis of DID and would like consistency across treatment providers. I may need access to NHS crisis care at any time, or I may never get back to work, run out of savings and be dependent on NHS MH care and welfare benefits – for this I will need a proper diagnosis.

Overall I just want a holistic, professional considered and reasoned opinion on what is wrong and how best to try and fix it.

4% have a structured assessment approach when diagnosing BPD

I heard this at a BPD conference I attended. I didn’t take down the citation/source but it was said by a man who ought to know the truth of it. 4%!? Really? I’m horrified.

I personally would not rail against a diagnosis of BPD due to stigma/lack of services. Not least because when I told a few close friends there has been a judicious silence due to my ostensible fit with some of the criteria especially over the last 18 months. It’s a possibility. I can accept that.

Also, I’ve got a diagnosis of DID and that surely rivals if not surpasses BPD in terms of stigma/lack of services. It’s taking me time to get to grips with it sure, I’d rather it was not an issue at all, but I trust the assessment process and I see results (tiny yet but there) in the treatment recommended. I can accept it.

But I can’t accept the assessment of traits of or a diagnosis of BPD without a similar rigorous assessment process. The criteria, the manifestations, are common to many other diagnoses. I want to be sure that a diagnosis of BPD is not just an easy fall back option because the psychiatrist has no idea what DID is, or because CPTSD (from developmental trauma) is not in the diagnostic manuals or simply because I’m a woman who has tried to kill herself.

The NICE Quality Standard QS88 Personality Disorders: borderline and antisocial June 2015 provides as Quality Statement 1: Structured Clinical Assessment that ‘Mental health professionals use a structured clinical assessment to diagnose borderline or antisocial personality disorder.’

This is because, ‘Borderline and antisocial personality disorders are complex and difficult to diagnose. Even when borderline or antisocial personality disorder is identified, significant comorbidities are frequently not detected. People often need support that goes beyond healthcare and this makes care planning complex. Carrying out a structured assessment using recognised tools is essential to identify a range of symptoms, make an accurate diagnosis and recognise comorbidities.’

At the very least I’ve got a significant co-morbidity (of DID) and quite frankly I would like a consideration of how that diagnosis fits into the NHS’ putative diagnosis. Or why my traits – which appear to be recurrent suicidal behaviour, abandonment fears, marked reactivity of mood and dissociation – aren’t attributable to the DID or something else (CPTSD perhaps?). Or how my life story which does not fit the characterisation of ‘a pervasive pattern of instability of interpersonal relationships, self image, and affects, and marked impulsivity, beginning by early adulthood and present in a variety of contexts’ (DSM-5) fits in.
NICE tells us that a structured clinical assessment should be undertaken using a standardised and validated tool such as the Diagnostic Interview for DSM–IV Personality Disorders (DIPD–IV), Structured Clinical Interview for DSM–IV Personality Disorders (SCID–II), Structured Interview for DSM–IV Personality (SIDP–IV), International Personality Disorder Examination (IPDE), Personality Assessment Schedule (PAS) or the Standardised Assessment of Personality (SAP).

I’m sure I wasn’t taken through one of the above with the psychiatrist I met at the CHTT whose opinion it is that I have traits of BPD. To be fair I spent some of that meeting flying above and to the side of myself (dissociation/depersonalisation) and some not there at all (me the writer) so who knows I may indeed have been and just can’t remember it.

I recognise that I may not get my wish for a professional, considered and reasoned opinion as a result of a structed assessment. Even NICE accepts that there is no gold standard test and ‘the level of agreement between interview schedules remains at best moderate (Zimmerman, 1994).’ But it would be a start.

What I do not want is what I’ve got and what NICE recorded back in 2009 as the problem of, ‘outside specialist treatment settings, there is still a heavy reliance on the diagnosis of borderline personality disorder being made following an unstructured clinical assessment…[T]here are potential pitfalls in this approach. First, agreement among clinicians’ diagnoses of personality disorder has been shown to be poor (Mellsop et al., 1982). Second, the presence of acute mental or physical illness can influence the assessment of personality. The presence of affective and anxiety disorders, psychosis, or substance use disorder, or the occurrence of an acute medical or surgical condition can all mimic symptoms of borderline personality disorder; a primary diagnosis of borderline personality disorder should only be made in the absence of mental or physical illness. It is also preferable for clinicians to obtain an informant account of the individual’s personality before definitively arriving at a diagnosis of borderline personality disorder.’

So to go or not to go?

At the moment I’m going. I don’t think it’s productive to shut down the potential for a collaborative formulation and diagnosis of my difficulties and how best to meet them.

I’ll ask for (or at least try as I’m deathly afraid of the meeting but that is for another blog) a structured assessment hopefully over a number of appointments, information of the effect of the DID (assuming they accept it, the other psychiatrist just dismissed it and said dissociation is part of BPD), the relevance of being acutely unwell when I saw that psychiatrist, the relevance of my life story.

We’ll see if I make that 4%.

Capacity, Suicide and DID

One night I found myself at the train tracks. It was dark, cold. I waited. And waited. No trains came. I got tired of waiting and checked my phone to see what was up with the trains. Mr Google told me no trains would come along that stretch of track until the morning commuter trains ran. I went home.

Another day I felt myself spiralling. I was terrified that come 2am I would be at the train tracks. I wanted help to avert that future path. I called the crisis line for help to be told ‘that’s your choice’ if you go and do that. That did not help. Instead I took a load of diazepam to ensure I was completely knocked out overnight.

I recently responded to a twitter poll on whether a mental health professional (“MHP”) had ever told me that it’s my choice to die and they can’t stop you or words to that effect. An overwhelming majority answered yes (thanks @we_are_nina). It seems that my experience was not unusual, that a too ready assumption of capacity may be easy way for crisis teams to off load responsibility for suicide.

Was it really my choice to kill myself that 1st night? Would it have been my choice to kill myself that 2nd night? Did I have the mental capacity to make a choice, i.e. to make a decision to kill myself at that time?
I don’t think I did.

The Mental Capacity Act 2005 (“MCA”) provides that I must be assumed to have capacity unless it is established that I lack capacity (section 1(2)). I am also not to be treated as not being unable to make a decision merely because I make an unwise decision (section 1(4)).

For many killing one self is an unwise decision but for me, at that time, in the dark as to what was wrong, with no hope that things could get better (having tried…oh having tried), in unendurable pain and distress, it was not an unwise decision. But this is not the part of the MCA the MHP seem to be misapplying. The tone in which I was told ‘that’s your choice’ implied their belief that notwithstanding my professed fear of killing myself, if I was to go and do such a foolish and unwise thing then so be it, I had the capacity to do so. No skin off their nose.

The bit of the MCA to which I think the MHP paid little or no attention to was section 2(1). This provides that ‘a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or the brain’.

The practical assessment of capacity is done in accordance with Section 3(1) MCA. This states that I would be unable to make a choice to kill myself if I was unable to: (a) understand the information relevant to the decision; (b) or to retain that information; (c) or to use or weigh that information as part of the process of making the decision; (d) or to communicate my decision.

I don’t think I had a problem with (a), (b) and (d) and in a eight minute phone call I’ll forgive them for not checking. My concern is the possible effect of my illness/disorder on my ability to use or weigh information and the wholesale failure of the MHP to assess whether I was able to make a capacitious decision i.e. make a choice, at that time to kill myself because of the effect of my illness/disorder.

Using or weighing is ‘the capacity actually to engage in the decision-making process itself and to be able to see the various parts of the argument and to relate the one to another’ (The PCT v P, AH & the Local Authority [2009] EW Misc 10 (COP)).

Clearly in the second example I was able to use and weigh. I took in the lack of help the MHP was giving me, assessed my chances of making it through the night, factored in my then wish not to die, me access to pills and made a capacitous to knock myself out to remove the possibility of wandering at night. But the MHP didn’t ask me any questions to establish this. His attitude was simply that if I didn’t go for the walk with the dog he was suggesting then of course it’s my choice to kill myself later on.

In the first example I found myself at the train tracks in a state of heightened distress. I had clearly entered into a dissociative state and my front or thinking brain had switched off and my back brain, the instinctive automatic one, the one that does not use or weigh up information had reacted. This is a basic biological trauma response that MHPs seem to ignore. I was not reasoning or cognitively processing. I was in shut down. At that time I lacked capacity to make the decision to kill myself.

Of course in my case it was slightly more complex as the protector one, who in extremis thinks that the only way to protect us is to throw ourselves under the train, had taken us there. I (the writer) did not really want to die at the time. I was tired of living sure, but not actively wanting to die. I don’t even think his (the protector one) front brain had gone off line – he protects us from pain, we were in pain, he acted to stop it within the circumstances that existed at the time. In fact we’ve since come to a negotiated settlement that he won’t do that unless certain criteria are fulfilled; his behaviour is rational. But I don’t expect MHPs to know or take this into account – all I expect is a proper assessment of capacity when I call and for them not to be so ready to say it’s your choice, see ya.

To be fair to MHPs I didn’t call them when I was at the tracks when perhaps they may have been more ready to assess capacity at a time of acute crisis. Luckily the googling in effect brought my thinking brain back online by enabling the functional one to take over and I went home.

However, had I thought to call the crisis line (and speak to an answer phone, leave a message and await a call back…really…really?) it’s possible that a calm voice, talking through options, not telling me it was my choice, supporting me to do some grounding might have (subject to the DID complication) restored to me the capacity to make a decision. If it did not then the MHP ought to go on to decide what to do in my best interests (sections 1(5) and 4).

So in summary the MHP was right to tell me it was my choice when I spoke with him. But problematically, although he was right for me, I’m sure there are many many occasions when a person’s distress and the effects of their disorder/illness is such that they lack capacity when they call the crisis team.

My concern is that the failure of MHP to ask themselves: how is this person’s illness/disorder affecting their thinking, to assess capacity, to avoid the easy off-loading response of ‘it’s your choice’, means lost opportunities to help vulnerable people and a failure by MHP to abide by their obligations under the MHA.

DID Treatment Funding and Human Rights

I’d discovered that establishing clinical and cost effectiveness and affordability was unlikely to be enough to access NHS treatment for my DID. But what about my human rights I thought. Surely, surely I’ve a ‘human right’ to diagnosis and treatment?

Section 6 of the Human Rights Act 1998 states that it is unlawful for my CCG to act in a way which is incompatible with a right under the European Convention of Human Rights (“ECHR”). I consider that by failing to provide me with a diagnosis treatment pathway for my DID my CCG is acting incompatibly with a number of my rights under the ECHR. But will this hang together in court?

I started with Article 2 of the ECHR. This provides that my right to life shall be protected by law. I’ll accept that the CCG is not looking to actively kill me but luckily the European Court of Human Rights (“ECtHR”) has found that the State has a duty to take appropriate steps to safeguard the lives of those within its jurisdiction (LCB v United Kingdom (1999) 27 EHRR 212) and that acts and omissions in the field of healthcare policy may in certain circumstances engage its responsibility under Article 2 (Powell v United Kingdom (2000) 30 EHRR CD 362).

The lack of a diagnostic and treatment pathway led I believe directly to what my acute health trust said was my ‘chronic suicidality’ over the last 18 months (I’ve not had this problem before) with acute flareups leading to serious attempts.

With my most serious attempt I was only saved from certain death due to my failure to appreciate that the trains along my patch of quiet dark accessible train tracks did not run throughout the night – well at least I made my GOP laugh when I recounted the story.

But it is not just me. The DSM-5 states that more than 70% of outpatients with DID have attempted suicide and multiple suicide attempts are common. There is clear evidence that my life has been put at risk by the CCG’s failure to provide a diagnostic and treatment pathway.

However, the ECtHR has been careful to limit the ambit of Article 2 access to health care cases. In Pentiacova v Moldova (2005) 40 EHRR SE23 the court made note of the lack of evidence in that case to prove that death was caused by lack of appropriate medical care and not the illness itself when determining the application was manifestly unfounded. As such cogent evidence is needed to establish the link to death. But with mental distress I’m well aware that there is huge scope for the CCG to lay the casual link elsewhere – it would probably say my therapist was going on holiday and that triggered the flare up or something…

Further, to be fair to the CCG, it, via its commissioning arrangements with my acute health trust, did diagnose my chronic suicidality and provide what it considered to be appropriate treatment by way of the crisis team. This is probably enough to fulfil the positive obligation to protect life – Article 2 says nothing of my quality of life.

Next I looked at Article 3 of the ECHR. This provides that no-one shall be subjected to torture or to inhuman or degrading treatment or punishment. This is an absolute right that cannot be breached in any circumstances.

The last 18 months have certainly been torture for me but would a judge agree my experience fell within the ambit of Article 3?

‘Treatment has been held by the Court to be “inhuman” because, inter alia, it was premeditated, was applied for hours at a stretch and caused either actual bodily injury or intense physical and mental suffering. Treatment has been considered “degrading” when it was such as to arouse in its victims feelings of fear, anguish and inferiority capable of humiliating and debasing them.’ (RR v Poland (2011) 53 E.H.R.R. 31)

In my case was the failure to provide a diagnostic and treatment pathway an inhuman or degrading treatment?

Over the last 18 months I have suffered very intense mental distress from not knowing what was happening to me and from not being provided with treatment to ameliorate it. I was afraid. I gave up hope. I felt mad, crazy, ashamed. It was humiliating – why was I, a previous highflyer like this? Why do others get treatment and not I?

But is this level of distress enough? It is well established that,

“Ill-treatment must attain a minimum level of severity if it is to fall within the scope of Article 3. The assessment of this minimum is relative: it depends on all the circumstances of the case, such as the nature and context of the treatment, its duration, its physical and mental effects and, in some instances, the sex, age and state of health of the victim.” (A v United Kingdom [1998] 27 EHRR 661).

Each case will be assessed on its own facts. My mental distress resulted in suicide attempts, self-harm, social withdrawal and an inability to work. I certainly feel this attains the minimum level of severity.

But the CCG will no doubt argue otherwise. It will point out I was never an inpatient – voluntary or otherwise, I never suffered from such severe self-neglect as a result of mental distress that I needed social care. I’m affluent, educated, got good support from my GP, some support from the CHTT and was able to pay for therapy. I’ve no physical disabilities that exacerbate my mental distress and my ability to deal with it. As of yet I’ve not actually asked the CCG for help and been refused.

It’s a fine balance. Success seems to be more likely for the many whose personal accounts I’ve read that tell of years of medical neglect, denial, iatrogenic trauma, exacerbation by welfare polices and homelessness issues.

I then turned to Article 8 – surely this would help? Article 8 states that I have the right to respect for my private life. My private life includes my psychological integrity (Niemietz v Germany (1993) 16 EHRR 97) i.e. my mental distress as a result of the DID. My right to respect includes a positive obligation to act.

But Article 8 is a qualified right. My CCG can interfere with it (i.e. provide no positive help through the provision of appropriate medical care) where that is in accordance with the law and is necessary in a democratic society in the interests of the economic wellbeing of the country and the protection of the rights and freedoms of others.

At first glance Article 8 does not help me. The courts have been as clear as clear can be that Article 8 is not a gateway to specific health care. Back in 2011 the Court of Appeal noted,

‘there is no reported case in which the court has upheld such a claim [for medical support] by an individual complaining of the state’s non provision of medical treatment’ (R(Condliff) v North Staffordshire PCT [2011] EWCA Civ 910).

I’ve not been able to find any in the intervening 8 years. Indeed the ECtHR has said,

‘[T]he Convention does not guarantee as such a right to free medical care…While it is clearly desirable that everyone has access to a full range of medical treatment, including life-saving medical procedures and drugs, the ack of resources means that there are, unfortunately, in the Contracting States many individuals who do not enjoy them, especially in cases of permanent and expensive treatment.’’(Pentiacova)

This is due to the,

‘fair balance that has to be struck between competing interest of the individua and the community as a whole and to the wide margin of appreciation enjoyed by states in this respect in determining the steps to be taken to ensure compliance with the Convention…This margin of appreciation is even wider when…the issues involve an assessment of the priorities in the context of the allocation of limited state resources…[i]n view of their familiarity with the demands made on the heath care system as well as with the funds available to meet those demands the national authorities are in an better opposition to carry out this assessment than an international court.’ (Sentges v Netherlands (2003) 7 CCLR 400)

I.e. where it is a matter of limited resources and unlimited demand generally what the CCG says goes.

But, as all lawyers know, just because a case has not been reported yet doesn’t mean the practice is lawful. It just means they’ve got away with it so far!

Lord Brown in the Supreme Court case of R(McDonald) v RBKC [2011] UKSC 33 correctly recognised that the ECtHR has accepted that there may be a positive Article 8 obligation to provide treatment (subject to justification) where there is a direct and immediate link between my wish for treatment and my psychological integrity and a special link between the situation complained of and the particular needs of my private life.

Lord Brown means that I cannot just moan about anything and everything – my complaint needs to be an ‘exceptional’ case where the state’s failure [to provide diagnosis and treatment is] ‘interfering with my right to establish and maintain relations to other human beings and the outside world’ (Sentges). My undiagnosed and untreated DID meant I lay on the sofa for days unwashed – I certainly was not going out to parties – so I reckon I pass this hurdle easily.

The real difficulty lies with the wide magin of appreciation and the CCG’s (anticipated) justification of ‘limited resources silly’ but the reported cases have all been where the individual is seeking a certain type of treatment or care. They have had access to diagnosis and some treatment appropriate to their illness but not ‘total haemodialysis coverage’ (Pentiacova) or a robotic arm that would reduce his dependency on others by 1-3 hour a day (Sentges) or an inpatient placement close to home (R(Dyer) v Welsh Ministers [2015] EWHC 3712 (Admin).

I’m not looking (as this stage at least) for schema therapy over sensorimotor therapy – I just want clinically effective long term talking therapy treatment instead of no treatment at all. This wholesale lack is the material difference, in my view, between my case and the others.

Surely this lack exceeds the CCG’s wide margin of appreciation? Surely no treatment at all (for the DID and not for any co-morbidities such as anxiety, depression, hearing voices (I’m obliged by those inside to add they are not voices they are people) is an unjustified interference?

There is not a lot of guidance I can find on when the failure to provide medical treatment will be an unjustified interference in an individual case. There is some help to be had from the case of Anufrijeva v London Borough of Southwark [2003] EWCA Civ 1406 which states,

‘Sullivan J was correct to accept that Article 8 is capable of imposing on a State a positive obligation to provide support. We find it hard to conceive, however, of a situation in which the predicament of an individual will be such that Article 8 requires him to be provided with welfare support, where his predicament is not sufficiently severe to engage Article 3.’

So if my distress is sufficiently serious to trigger an Article 3 breach then the CCG would be compelled to provide me with treatment.

Whether the interference is justified (and thus the CCG do not need to provide me with treatment) would also depend on the evidence the CCG puts forward as to why its failure to provide me a diagnostic or treatment pathway is necessary in the interests of the economic wellbeing of the country and the protection of the rights and freedoms of others.

The CCG would need to evidence the economic argument for a lack of treatment and why others should get treated and not I. It would need to address discrimination issues e.g. why do people diagnosed with BPD or CPTSD or schizophrenia or even bipolar – all diagnosis with a link to developmental trauma – get treatment (in theory) and I don’t? Why does someone with a gene deficiency get treatment and I don’t?

But remember my CCG has no policy. I doubt they have addressed their minds to it at all. My hope would be that they would take a pragmatic view when I raise this Article 8 issue.

After all the officer time and cost of collating this information, the cost of legal advice, the fear of setting a precedent, the scrutiny the court would place on their internal affairs, the exposure to the glare of the media, the risk of reputational damage far outweighs the cost of my treatment such that they would just approve it.

It seems I may have an Article 8 human right to treatment after all!

DID and NHS Funding – to fight or not to fight?

I was diagnosed – privately – with Dissociative Identity Disorder (“DID”) about a month ago.

This followed almost 18 months of huge mental distress where I flailed around in darkness not knowing what was wrong with me or what to do to fix it. ‘Chronic suicidality’ – as identified by the NHS psychiatrist – was the NHS’s overriding concern. I received NHS treatment for this, and to be fair it worked – I’m still alive, but this concern reflected what I’ve come to see as the prioritisation of physical safety over ameliorating the feeling and experience of mental distress. What I want is NHS treatment for the mental distress, for my DID. What I’ll get is likely to be nothing.

Dissociative identity forms as a creative survival mechanism for coping with overwhelming childhood trauma and disorganised attachment to a primary care giver. Different parts of my personality, memory, identity, behaviour and feelings didn’t integrate to shield me from experiences I was unable to cope with at the time. I experience this – sometimes – as living as different people with a complete memory block as to what that person did but more often as the feeling of having different people inside with their own thoughts, feelings, views, and agency.

It’s become a disorder as, in the last long while, it caused ‘clinically significant distress or impairment in social, occupational, or other important areas of functioning’ (the Diagnostic and Statistical Manual Version 5) i.e. I’ve had to stop work, lost friends, spent time at the train tracks and river and been in contact with my GP more than in all the rest of my life put together.

As a naive newbie to NHS provision for severe mental illness or indeed for any serious physical or mental ailment I thought there would be no problem with access to a diagnostic assessment and thereafter appropriate treatment from the NHS. Oh, how very wrong I was.

There is no duty on the NHS to provide a comprehensive health service – whatever the politicians would have you believe. There is only a target duty (i.e. a duty that is not individually enforceable by me for treatment for me) on the Secretary of State for Health to “continue the promotion of a comprehensive service designed to secure improvement in the physical and mental health of the people of England and in the prevent diagnosis and treatment of illness” (NHS Act 2006 section 1).

There is little point in my looking to challenge this duty. As Lord Woolf Master of the Rolls (as he then was i.e. a very experienced judge) commented in Coughlan v North and East Devon Health Authority [2001] QB 213 at paragraph 25:

‘The truth is that, while [the SoS] has the duty to continue to promote a comprehensive free health service…a comprehensive health service may never, for human, financial and other resource reasons, be achievable. Recent history has demonstrated that the pace of developments as to what is possible by way of medical treatment, coupled with the ever increasing expectations of the public, mean that the resources of the NHS are and are likely to continue, at least in the foreseeable future, to be insufficient to meet demand.’

I then looked to my Clinical Commission Group (“CCG”). This, for me, would be the main commissioner for diagnosis and treatment as DID is not considered to be a rare and specialised illness that falls under the remit of NHS England. I looked in vain.

My CCG has no mention of a DID diagnostic and treatment pathway anywhere on its website. It has a duty, pursuant to regulations 34 and 36 of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (“the 2012 Regulations”) to publicise its commissioning polices i.e. what interventions it funds. I’ve had experience of public bodies not publishing policies, either by oversight or design, so there may still be one hidden away. I’ve not asked as I reckon there is no point. I’ve learnt from google (with the obligatory caveat as to accuracy) that only one CCG of all 191 CCGs in England has a DID diagnostic and treatment pathway. How can this be?

DID is not rare. The statistics on prevalence indicate:

‘dissociative identity disorder is found in 0.4% to 7.5% of psychiatric inpatients (Sar, 2011). Rates for outpatients—people accessing mental health services but on an appointment basis—range from 2% to 6%. And finally, community studies—research based on people with no involvement with mental health services, i.e. ‘Joe Bloggs’—show the prevalence of dissociative identity disorder ranging between 0.4% and 3.1%.’ That would equate to quite a large number: between about 250,000 to just under 2 million people in the UK. To put that in perspective, prevalence rates for schizophrenia generally sit around the 0.55-1% range of the general population (Goldner et al, 2002). So arguably more people have DID than schizophrenia and yet rigorous research, appropriate treatment services, charity support and government investment for schizophrenia far outstrip anything available for people with dissociative identity disorder. (The Problem of Prevalence by Karen Johnson 1 May 2011 http://www.pods-online.org.uk; accessed 30 May 2019).

If DID is not rare – why is there no treatment?

The problem is CCG’s don’t have a duty to provide me with diagnosis and treatment either. Their duty is only to, ‘arrange for the provision of [such other services or facilities as are required for the diagnosis and treatment of illness] to such extent as it considers necessary to meet the reasonable requirements of the persons for whom it has responsibility’ (section 3(1) of the NHS Act 2006).

These are the mealy mouthy phrases parliamentary draftsman use to make (un)clear that CCG’s do not have an absolute duty to fund every clinically appropriate intervention and, importantly, that it is for the CCG to decide what they will fund. The phrases ‘as it considers necessary’ and ‘reasonable requirements’ mean that there is an extraordinarily wide ambit of discretion enjoyed by my CCG as to what interventions it funds.

As a funding official put it in R(Condliff) v North Staffordshire Primary Care Trust [2011] EWCA Civ 910 at paragraph 11,

‘The PCT is under a legal duty to break even…[t]his means that the PCT needs to consider carefully the costs of treatments and the benefits that a treatment delivers before we can agree to commission it. For the PCT, the decision to commission a particular type of treatment is not just a question of whether a medical treatment is clinically effective. If a treatment were not clinically effective, we would not commission it. However if a treatment is clinically effective, we would only commission the treatment if we could afford to do so. Our duty to break even means we need to judge whether clinically effective treatments are (a) a cost effective use of the limited resources available to the PCT and (b) affordable. As we have a fully committed and finite budget, the duty to break even means that if we commission additional services for any patient group where these are not funded at the moment, we need to pay for this by disinvestment in other services for other patient groups.’

There is little help to be obtained from the courts in challenging these decisions. Lord Justice Hooper made this clear in R(AC) v Berkshire West Primary Care Trust & Anor [2011] EWCA Civ 247 at paragraph 56,

‘the court is not appropriately placed to make either clinical or budgetary judgments about publicly funded healthcare: its role is in general limited to keeping decision-making within the law.’

As such the court will only look at the decision-making process and assess whether that has been done lawfully.

The problem for me is that even if the court says my CCG has not followed lawful procedure in formulating its polices (or making decisions under them), all that is likely to happen is that the policy or decision is sent back for the CCG to make again – this time correctly.

This ‘sending back’ may happen any number of times. The court will not order the CCG to provide me with treatment unless it becomes so aggravated with the CCG’s incompetence to make a lawful policy/decision that it determines that no rational CCG could not provide me with treatment. I’ve seen this happen in relation to other public bodies but it does means the CCG would have to have had some bad legal advice and even worse officer involvement.

But this is irrelevant – my CCG has no policy for the diagnosis and treatment of DID. What now?

I look to making an individual funding request (“IFR”). Regulation 34(b) of the 2012 regulations provides that my CCG must have ‘arrangements for the determination of any request for the funding of a health care intervention for a person, where there is no relevant NICE recommendation and the relevant body’s general policy is not to fund that intervention.’

I go back to the CCG’s website. It is slightly more helpful this time and I find forms and guidance to submitting (through the relevant clinician) an ‘IFR request submission for the review of an exception to a policy’. But is this really what I am looking for? I think not. These are requests for interventions based on exceptionality criteria. I either have to have exceptional clinical circumstances that are ‘significantly different to the cohort of other patients with the same clinical condition’ or my ‘condition or clinical presentation is so unusual that there is no relevant commissioning arrangement and provide evidence demonstrating clinical exceptionality’ (my CCG’s 2017/18 request submission form).

But, as I’ve discovered, my CCG has no policy as to whether or not it will fund DID diagnosis and treatment – how then can an exception be made to it?

I need to fall back on basic public law principles – i.e. while legislation may not provide for the CCG to consider my type of IFR basic notions of the duty of fairness and accountability on public bodies compel it to do so – a duty enforceable at court.

How does the CCG consider whether or not to fund? In my view, the test the CCG should apply is, by analogy with its core section 3 NHS Act 2006 duty, whether it is going to provide a service for the diagnosis and treatment of my DID to such extent as my CCG considers necessary to meet my reasonable requirements as a person for whom it has responsibility. Importantly, this is a lesser threshold than that of exceptionality – don’t let your CCG fob you off with the exceptionality test (where there is no policy).

Now I keep mentioning diagnosis. Why? I’ve got a diagnosis from a very reputable source. Why do I need another?

Unfortunately, the attitude I perceive from NHS, on mentioning this, means that further officially sanctioned ‘proof’ may well be needed – as a class the NHS seems to be unwilling to accept private diagnosis, presumably I speculate, because it circumvents its gatekeeping process. I.e. if it diagnoses me instead with, say, borderline personality disorder then it need not provide treatment for DID. My challenge would be stymied from the get-go.

As such, drawing guidance from Condliff I would likely need to persuade the CCG that diagnosis and treatment (of the specific type I am asking for) of my DID is clinically effective, cost effective and affordable.

The evidential burden on me is likely to be onerous. While the decision is the CCG’s it is always best to provide them with robust, detailed, expert and comprehensive evidence that they cannot rationally discard.

Google research throws up evidence of the most effective treatment from the International Society Study of Trauma and Dissociation (“ISSTD”) Guidelines for Treating Dissociative Identity Disorder in Adults (2011). This indicates that the primary treatment modality for DID is individual outpatient psychotherapy possibly 2 times a week of 50 – 90 mins. Of course, for any application I make I’d need a report from a respected clinician on my treatment recommendations.

As regards affordability in my experience 3 sessions at £70 per hour for 46 weeks in the year equals an annual cost of less than £10,000. Throw in a bit for supervision (trauma therapy is hard on the therapist) and perhaps some for limited telephone contact over the week (trauma therapy is even harder on the patient). This might be £12,000 per year. This is certainly affordable.

Google also throws up at least one study that illustrates that treatment is cost effective (Lloyd, M. (2016) Reducing the cost of dissociative identity disorder: Measuring the effectiveness of specialized treatment by frequency of contacts with mental health services, Journal of Trauma and Dissociation, 17 (3), pp 362-70). I’d send this in with my application.

There is also nothing stopping me providing my own evidence for cost effectiveness. I could collate the cost of GP visits and telephone consultations, treatment by the crises team and A & E attendances. Luckily, I’ve not had any ambulance call outs, police intervention or inpatient stays due to significant GP support, for which I’m hugely grateful, but all could be thrown in.

I’d have to be careful – a wily CCG may say but the costs of the police, the ambulance trust, indeed the GP (depending on the nature of their contract) and the mental health trust where it is, as in mine, funded by block contract (i.e. a fixed annual fee irrespective of demand) have little impact on its budget and thus little relevance to cost effectiveness. So go away.

This is a short-sighted argument evocative of the bad old days of siloed NHS provision. Today there are co-operation and integration powers and duties on the various NHS bodies that I’d pray in aid as well as a wider definition of what cost effectiveness meant.

If worse came to worse I’d give up on calling the Samaritans, and after, the call to the crises team destabilised, as it as in the past, me even more, I’d not go to the GP for diazepam but just show up at A&E in crises. Google tells me (accuracy caveat) that the average A&E attendance in 2015/16 cost £138. I’d need to rack up a fair few visits but ‘chronic suicidality’ right? I’m not even sure how much of a joke this is.

What is more dispiriting than the CCG’s potential non collaborative approach is that establishing clinical efficiency, affordability and cost effectiveness is unlikely to unlock funding for my diagnosis and treatment on its own.

Public bodies are terrified of precedent setting and after all I’ve said there are an awful lot of us out there with DID. If I get treatment, why not you? The CCG is extremely likely to put up a fight. After all, I’ve no ‘right’ to treatment so all the CCG has to do is make a rational decision to refuse. I could probably draft one for them.

The key to unlocking funding is therefore to fight back. Making a case for clinical efficacy, affordability and cost effectiveness is only a necessary precondition for success.

A private IFR is easy for the CCG to bat away. What I would need to do is to bring the fight into the open, and from my perspective, the most effective way is to bring it into the court system (or at least maintain a credible threat of doing so).

The holy grail would be to frame my court challenge such that it is to be the court making the substantive decision as to treatment. This may be under the human rights legislation or the Equality Act 2010. I’d also drag in the patient choice regulations so I could choose my therapist (more on these in later articles).

The other way (and it’s probably best to do it in addition to the holy grail approach) is to kick up such a fuss on procedure that the CCG loses heart.

There are substantial procedural matters in the 2012 regulations the CCG must take into account when making an IFR decision of this type that hard-pressed public bodies seldom, in my experience, adhere to (again more later). As noted above the court will not order treatment on this basis but public bodies, as a class, are terrified of ‘reputational damage’ as well as judicial scrutiny of their internal processes. Settlements at the door of court are not rare with public body service provision.

But this means outing myself. I’ve not even sent back the draft diagnostic assessment. It is internalized stigma for sure but this is where I am.

Even without this issue I’m a mess. Who’s going to collate the evidence, write to the CCG, chase, chase and chase again, endure misrepresentations, obfuscation, denial? Not I.

As such the answer for me so far is ‘not to fight’. It’s a damn shame for me and for others…how many CCGs rely on these obstacles to rest easy in the knowledge that challenge is unlikely? Probably 190.