RW, Re [2009] EWHC 3934 (Fam)

[2009] EWHC 3934 (Fam)

IN THE HIGH COURT OF JUSTICE

No. COP1165315101

Venue Royal Courts of Justice

Date Thursday, 5 th March 2009

Before

MR. JUSTICE McFARLANE

(In Private)

Re “RW”

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MR. J. O’BRIEN appeared on behalf of RW.

MR. J. AUBURN appeared on behalf of the Primary Care Trust.

MR. A. KEENE appeared on behalf of the Official Solicitor.

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J U D G M E N T

(Approved)

MR. JUSTICE McFARLANE:

[1]This is a judgment given at the conclusion of what has been an extended set of hearings in relation to proceedings brought by a Primary Care Trust in the Midlands in relation to the capacity and best interests of a 52-year old woman (who I shall refer to as “RW” throughout this judgment). The case has been presented by counsel for the PCT and for RW, with the additional assistance and contribution of counsel on behalf of the Official Solicitor, with the utmost skill and clarity, and I found this one of the most difficult factual cases to consider within this already difficult and sensitive jurisdiction.

[2]RW is, on any view, a woman of both great ability and also substantial disability. Among her abilities are her obviously very high level of intellectual functioning, her clarity of thought and her determination and resolve, all of which are evidenced by her life to-date and the manner in which she has sought to live it, despite her obvious disabilities. In making that observation I have particularly in mind RW’s academic achievements, her ability to communicate with the court and professionals on paper, in detail and in a very clear manner, on these complex issues and her ability to maintain control over her life and her immediate environment despite being totally dependent on others for so much.

[3]The PCT, who makes this application, is responsible for the provision of complex healthcare services in the area of the city in the Midlands in which RW resides. RW, as well as her obvious abilities, has a complex cocktail of medical conditions which render her the victim of substantial disabilities. The first is a congenital visual defect, in common, as I understand it, with a number of members of her family. It had been present throughout her life but she was officially registered as blind in 2001. In fact she has some very modest visual ability but this is sufficient to make out shapes and, in particular, with the aid of enhanced screen presentation, she can read and prepare documents on her specially adapted computer.

[4]Secondly, she is tetraplegic (albeit without a formal neurological diagnosis), with the result that she is only able to control the movement of her head and neck. In consequence of the tetraplegia, RW requires assistance with all aspects of daily living and, in particular, bladder and bowel control. She is totally confined to her bed and dependent upon visiting carers.

[5]Thirdly, she has a swallowing disorder which creates an intolerance to certain foods and requires specific consistency for others, and lastly, she has breathing problems.

[6]In addition, RW currently has a diagnosis of post traumatic stress disorder arising from her previous experience of institutional healthcare within her home area. As a result, she is unable to contemplate, let alone consent to, any form of care provided by persons or organisations connected with the health or social work services in the entire health service region within which she lives. To put this in context, the Health Service is administratively divided into regions, with each being governed by a strategic health authority. The SHA for the region within which RW is, which is the West Midlands, has a population of 5.4 million and covers Birmingham, Coventry, the Black Country, Staffordshire (including as far north as Stoke on Trent), Shropshire, Herefordshire, Warwickshire and Worcestershire. There are 16 PCTs, of which the applicant is one. Whilst RW has not been this specific, it is the court’s understanding that she is likely to suffer adverse PTSD responses if required to receive care from any healthcare professional or service working in or connected with anywhere within this very sizeable area of the country.

[7]In short, the position that brings these parties to court is that whilst all are agreed that RW needs to undergo a multidisciplinary team assessment of her current physical and psychological needs, RW is unable to contemplate such an assessment taking place anywhere in the West Midlands and the PCT are unable to require any healthcare provider outside the West Midlands to undertake the work. The PCT seek to move forward from this standoff by, as a last resort, obtaining the court’s authorisation to permit the admission of RW to a hospital within the West Midlands against her will if there is no out of region research available.

[8]As a result of this hearing this court has some understanding of the difficulties and frustrations that must be felt both by RW but also by the PCT in finding themselves in the situation that I have described. Both sides are stuck in the current bind. It is plainly a highly unusual and exquisitely difficult problem both for RW and for the PCT. In acknowledging the difficulty of the situation in which they both find themselves, the court is also very much aware of the importance of the decision in this case and the consequences of it for both sides. The final observation of a general nature that I make at this stage is that whatever the history may be, this court is entirely satisfied that the PCT is genuinely intent on seeking and obtaining an out of region solution if this can be achieved. They have responsibility for RW’s healthcare and within these proceedings are, in the court’s view, shouldering that responsibility in a positive and insightful manner. I return now to a brief chronological history of the developments in recent times.

[9]In 2005 RW issued a claim for judicial review against the PCT relating to her healthcare provision. Those proceedings were resolved by consent on the basis that the PCT would establish and independent case manager to organise provision of care in respect of RW’s needs. That arrangement ended some two years later (in November 2007) when the PCT terminated the appointment of the organisation then charged with providing ICM on the basis that RW had a range of other organisations from which to choose to undertake that role.

[10]On 28th February 2008, RW having apparently rejected each of the other organisations on offer, then issued further judicial review proceedings challenging the PCT’s decision to terminate the ICM arrangement. The court dismissed RW’s claim at first instance on all grounds save one. In the course of the progress towards the Court of Appeal RW instructed Dr. Dominic Bell, an anaesthetist and intensifist, to prepare an overview of her condition and needs, that instruction being made in May 2008.

[11]On 21st July, the Court of Appeal heard RW’s appeal in the judicial review proceedings. They upheld the first instance judge’s decision. RW subsequently withdrew the outstanding ground upon which permission had been given, on the basis that another organisation would be appointed at her interim ICM. But that arrangement only held in place until the middle of September 2008, when the organisation concerned resigned from the role.

[12]Another development was that in September, Dr. Ruth Kent, a consultant in neuro-rehabilitation, was instructed but advised that an assessment of RW’s PTSD was required before any other assessment could take place. Consequently, on 10th September RW instructed Professor Tom Sensky, a well-known psychiatrist, to conduct a preliminary assessment. He visited RW at her home and provided a report, dated the 14th September, and, as a result of his encounter with her, he concluded that she did not suffer from post traumatic stress disorder at that time.

[13]Further opinion was sought in November 2008 from Dr. Claudia Herbert, a psychologist who is an internationally renowned expert, particularly in post traumatic stress disorder. As a result of her assessment of RW, she concluded that RW does indeed suffer from PTSD and that it is both severe and of a complex form.

[14]Following that assessment, on 26th November 2008 the PCT issued the current application under the Mental Capacity Act. The focus of the application is on RW’s capacity to make the following decisions concerning:(a) medical treatment and assessment;

(b) care provision;

(d) contact with others, including care professionals.

[15]On 30th November (four days after the issue of proceedings) Professor Sensky filed a further report in which he confirmed, following discussion with Dr. Herbert, that he agreed with Dr. Herbert’s diagnosis of PTSD.

[16]The matter came on for a short interim hearing before Mrs. Justice Parker, sitting in Birmingham on 17th December 2008. The judge was able to hear contributions down the telephone from RW, and from Professor Sensky, Dr. Bell and Dr. Herbert, and gave a short judgment, which is at page 528 of the bundle. As a result of that hearing, the judge made interim decisions concerning the provision, in particular, of emergency treatment for RW in the course of the lead-up to the final hearing that has now taken place before me. That was the conclusion of Mrs. Justice Parker on 15th December, on the basis that RW lacked capacity with respect to the provision of emergency healthcare in the West Midlands and that it was in her best interests, in the event of a medical emergency, to be treated in the West Midlands against her will and, if necessary, by depriving her of her liberty to choose to be elsewhere.

[17]Throughout December, Dr. Bell canvassed the availability and willingness of a range of regional spinal units to offer to be the base for RW’s MDTA, it being agreed by all parties that a spinal unit was the optimum type of facility for that work. Dr. Brian Gardner of the International Spinal Injuries and Rehabilitation Centre at the Royal Buckinghamshire Hospital indicated to Dr. Bell that he would be prepared to consider the undertaking. However, a lengthy email sent by RW in mid-December caused the Royal Buckinghamshire team to reconsider their position. In the email RW set out a number of apparent pre-conditions and conditions for the assessment process. Whilst it is plain to the court that the content of that email must have been largely driven by what RW had read in the report of Dr. Herbert that had become available only a few days before, this connection may not have been understood directly by the hospital. Thus, although RW may have been doing no more than putting the recommendations of Dr. Herbert into her own words, the hospital saw a detailed set of requirements being placed upon them by the patient herself. Dr. Gardner proposed that RW be admitted for a short stay to consider the implications of this communication and to plan the process more definitely, but this option was apparently vetoed by RW. In January there was further direct communication between Dr. Gardner and Dr. Herbert, after which, on 22nd January, Dr. Gardner declined to admit RW until “a clear and unambiguous diagnosis of RW’s condition is made”.

[18]Given the importance of finding a unit, it is necessary to read part of Dr. Gardner’s response to this judgment, and it is at page 404 of the bundle. In the course of a longer email than I am going to quote, Dr. Gardner said this at paragraph 3, “They [that is the team at Buckinghamshire] are very concerned that RW has set many pre-conditions to her admission for assessment and the suggested pre-admission assessment that appear to make it almost impossible for the staff to avoid triggering an ‘event’ and consequently a complaint. The management are reluctant to expose their staff to the risk of complaint, or other action, if an ‘event’ is triggered unwittingly during the course of, or as a result of, an assessment visit at her home”. Then later he said this, “I recommend that a clear and unambiguous diagnosis of RW’s condition is made. From this it will be clear what aspects require psychological or psychiatric intervention and which require physical intervention. It should then be possible to identify which professionals should be involved in her treatment and which specialist centres should be sought to provide this treatment. It may be that the Royal Buckinghamshire Spinal Injuries and Rehabilitation Centre will be suitable, with appropriate support, for this, but at this stage matters are too unclear to state this with certainty. I am somewhat pessimistic that the hospital will agree to her admission at any time, for the reasons given above, but perhaps when all the preliminary diagnostic evaluations have been done then this could be revisited”.

[19]As a result, matters have not moved on. Dr. Bell canvassed the availability of other units but on hearing that the Royal Buckinghamshire had been reluctant to take RW (and no doubt for other reasons), no volunteers came forward to take the matter further on. Currently, therefore, RW continues to live at home, and to do so without an ICM in place. There are concerns about the current adequacy of her care. In particular, Dr. Bell, in a supplementary medical report, at page 269 of the bundle, says this, “The current status is that the patient’s nursing care team is disintegrating through natural wastage as staff retire, there is no available independent care provider and the patient has refused care teams from her general practitioner and PCT”. The GP (Dr. Rolston) says this, at page 275, “The care package, which was never generous, has collapsed over the past few months due to a number of key people leaving”. Later he says, “She is now really struggling to survive at home with care which, in my opinion, is vastly below the minimum that is required”.

[20]Dr. Rolston came to give evidence in this hearing in late February and is in fact surprised that RW has maintained her medical equilibrium in recent weeks, based as it is on a haphazard rota of three carers who are organised by RW herself over the telephone from her bed, together with other care provided to her by her friend and long term partner PJ. All, including RW, are, however, agreed that the way forward now is for RW to undergo a multidisciplinary team assessment (an MDTA) which will, for the first time, as I understand it, seek to establish baseline diagnoses and assessments of the current state of each of RW’s various conditions with the aim of developing a fresh care package that more readily looks to meet her needs and enhance the quality of her life above its present subsistence level.

[21]Despite the degree of agreement that exists about the need for an MDTA, and despite the efforts by Dr. Bell to identify a unit that could admit her for that process, it has not been possible to identify any such resources outside the West Midlands. The PCT continue to be open to funding an MDTA at a unit outside the West Midlands but, in the event that one cannot be found, they say that the only option is for the assessment to be undertaken within the region, either at an NHS hospital or at a local private hospital.

[22]A further gloss on the situation is the fact that all parties agree with the advice of Dr. Bell that, if possible, RW should undergo the neurological part of the assessment, if necessary at a different unit, prior to the main MDTA, so that a baseline understanding of her neurological state can be established at the start. RW’s position is that she will agree in principle to be admitted to any unit provided it is outside the West Midlands and provided that the admission and the MDTA is supported by and involves Dr. Herbert. RW would anticipate that any unit would be guided by Dr. Herbert’s advice in the manner in which they approached her and accommodated her PTSD condition but, over and above that, RW would not now seek to make any conditions of her own concerning the treatment regime. In particular, RW would still hope that the Royal Buckinghamshire Hospital could reconsider her case and be persuaded to admit her for the assessment process.

[23]Looking further ahead, RW is of the view that if she is to live in the community in the future, and if she is to receive help and social care, then because of her PTSD, almost by definition, she will have to live somewhere other than in the West Midlands area. She is fully ready to give up her current home to achieve this outcome, if that is required, but, of course, at this stage no alternative location has been identified let alone investigated and funded.

[24]What then is the basic legal context within these various decisions fall to be determined by this court? They fall within the structure of the Mental Capacity Act 2005, and, in particular, sections 1 to 4 and 14, and I propose to quote, not in their entirety but fairly extensively, from those early sections. Section 1 sets out the principles:

“(1) The following principles apply for the purposes of this Act. (2) A person must be assumed to have capacity unless it is established that he lacks capacity. (3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. (4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision. (5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. (6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.”

[25]Subsection (2) deals with people who lack capacity. Subsection (1) of s. 2 reads:

“(1) For the purposes of this Act, 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 brain.”

Pausing there, within that subsection there are a number of elements. First of all, although it is the last mentioned, the court has to be satisfied that whatever process is taking place is because of an impairment or a disturbance in the functioning of the mind or brain. That has been referred to in submissions as the diagnostic threshold. Secondly, the court has to be satisfied that the person is unable to make a decision for himself, and, thirdly, the decision has to be made in relation to a matter. Submissions have been made between the parties, to which I will turn, as to quite how widely or narrowly those latter two elements within subsection (1) have to be construed.

[26]Subsection (2) of s. 2 says:

“(2) It does not matter whether the impairment or disturbance is permanent or temporary. (3) A lack of capacity cannot be established merely by reference to -- (a) a person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity. to -- (a) a person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity. (4) In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities.”

[27]Section 3 is in these terms:

“(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable -- (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means). (2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). (3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision. (4) The information relevant to a decision includes information about the reasonably foreseeable consequences of -- (a) deciding one way or another, or (b) failing to make the decision.” (a) to understand the information relevant to the decision, (b) to retain that information, (d) to communicate his decision (whether by talking, using sign language or any other means). (2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). (3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision. (4) The information relevant to a decision includes information about the reasonably foreseeable consequences of -- (a) deciding one way or another, or (b) failing to make the decision.”

[28]Section 4 deals with “best interests” and, again, I propose to just to read two subsections. Subsection (2) reads as follows:

“(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps. (3) He must consider -- (a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and (b) if it appears likely that he will, when that is likely to be. (4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.” relevant circumstances and, in particular, take the following steps. (a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and (b) if it appears likely that he will, when that is likely to be. (4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.”

[29]The importance of those latter provisions in this case is that the evidence would suggest that RW, if she does lack capacity at any time in the future, will do so from time to time on a temporary basis rather than permanently. I do not propose to read the later subsections of s. 4. The power to make declarations is set out in paragraph 15 of the Act, and, again, I have that in mind.

[30]What then are the issues involved? I propose to summarise them in 12 points. 1. The diagnostic threshold It is accepted for the purposes of this hearing, and on the basis of the current expert evidence, that RW suffers from PTSD and that this “impairment of, or disturbance in the functioning of, mind or brain” is sufficient to satisfy that condition in s. 2(1). 2. Focuses on whether the PCT have established, on the balance of probabilities, that RW is “unable to make a decision for herself” and “in relation to a matter” at “the material time”, to use the wording in the first part of s. 2(1). 3. This formulation begs at least two questions, which are in issue, firstly, that is what is the matter that is in play, and, secondly, what is the material time? 4. The PCT case is that the “matter” is to be stated in general terms as being “her healthcare needs, including treatment, assessment and contact with healthcare professionals”. On the question of the “material time”, the PCT submits that RW’s lack of capacity is of a limited temporal nature, in that she only lacks capacity when she is affected by PTSD or when consumed by her efforts to avoid PTSD symptoms. They further submit that at present she experiences severe PTSD symptoms on a daily basis and that they occur many times during each day. The draft order, therefore, submitted by the PCT seeks a blanket open-ended declaration as to lack of capacity which is neither limited nor tied to any temporal considerations. 5. For RW it is submitted that at present she does not lack capacity to make decisions relating to her healthcare. It is accepted that in the event that RW were to come into contact with staff or institutions associated with the West Midlands, it is likely that she will suffer a severe onset of PTSD symptoms of such a degree that this could have an effect on her ability to make any relevant decision on her healthcare at that time. 6. Mr. O’Brien (counsel for RW) further submits that, on the basis that RW currently has capacity, the court and the PCT should strive to ensure that she maintains capacity. In support of that submission, he refers to the common law requirement of consent, being based on individual autonomy and self-determination, together with reference to s. 1(3) and s. 1(6) of the Act and Chapter 3 of the Mental Capacity Act Code of Practice. 7. In that regard, Mr. O’Brien submits that a course of treatment that placed RW into a unit in the West Midlands would, by its very nature, lead to her losing capacity and is entirely contrary to the thrust of those provisions and the need to strive for RW to retain capacity. 8. Finally in this regard, in the light of the known likely consequences for RW if she is admitted to a unit in the West Midlands against her will, Mr. O’Brien submits that such an admission would involve inhuman or degrading treatment and would therefore breach RW’s rights under

Article 3 of the European Convention on Human Rights

. 9. In contrast to the PCT, counsel for the Official Solicitor urges the court to adopt a much more issue-specific approach when defining the “matter”, in respect of which capacity falls to be considered, and suggests that the following issues are relevant:(a) Urgent admission to hospital for life-sustaining treatment or treatment to prevent significant harm.

(b) Non-urgent admission to hospital (whether NHS or private) for purposes of assessment, which breaks down into the following: (i) a decision as to whether to be admitted for a neurological assessment; (ii) a decision as to whether to be admitted for a multidisciplinary team assessment; (iii) in respect of both of the above: (1) A decision as to whether to be admitted in the first place, which will encompass consideration of, (a) location (whether inside or outside the West Midlands), and (b) type of institution (whether NHS or private). (2) Decisions to be made on an ongoing basis during the course of both admissions as to, (a) particular assessments to be undertaken, and (b) care-giving to maintain RW’s health and wellbeing, in particular relating to bladder and bowel care, and, finally,

(c) decisions as to transport to and from hospital for the purpose of each category of admission. 10. In relation to best interests, the PCT submit that the court should now accept that there is no non-West Midlands unit on offer and that a declaration should be made now authorising treatment in a West Midlands unit or by West Midlands staff, “In the event that it is not possible to secure arrangements for admission to a hospital outside the West Midlands”. It is accepted that in the absence of a detailed care plan, and/or evidence from the clinical team who would be responsible for RW’s care, that any declaration at this stage would be confined to the matter of principle before the court, with the court retaining control over the authorisation of any particular treatment plan once the details of that plan have been identified. 11. Separately, the PCT seeks a continuation of declarations authorising treatment within the West Midlands in the event of any emergency. 12. Finally in this list of issues, it is necessary for the court to consider whether RW has litigation capacity.

[31]I turn now to the evidence that the court has heard, and partly because this judgment inevitably may be used for purposes both in terms of canvassing further assessment options and also for further court hearings, I propose to summarise the evidence in some detail.

[32]The court has read reports or statements from, and heard oral evidence from, the following. Professor Tom Sensky is the professor of psychological medicine at Imperial College, London. He is an honorary consultant psychiatrist at the West London Mental Health NHS Trust and he has very extensive experience, with a particular interest in the psychological aspects of chronic physical, as well as mental, disorders.

[33]Dr. Dominic Bell is a consultant in intensive care anaesthetics at Leeds Infirmary.

[34]Dr. Rolston is RW’s local GP. He has known her for some 18 years and has been particularly interactive with her, and in relation to her care, in the last two or three years. He is the only employee of the local health service who RW has any form of continuing relationship with. Dr. Rolston was an impressive individual when he came to give evidence, and it is plain that his manner and his respect or RW have done much to ensure that at least this tenuous line of communication with the health authorities has been kept open and that someone with a health background, above that of the caring nurses who go in, is visiting and available to RW from time to time.

[35]Next, Dr. Claudia Herbert. She is a chartered clinical psychologist. She is the director and founder of the Oxford Development Centre. She is a specialist in trauma psychology and she is an internationally renowned expert in the condition of post traumatic stress disorder.

[36]In addition to those matters, and before turning to RW herself, the court has gratefully received two short statements from RW’s key supporter and partner, PJ.

[37]RW herself has played a significant part in this hearing. Before the hearing started, she had submitted a number of substantial and detailed statements prepared by her or prepared on her behalf. At an early stage the court offered, and the offer was accepted, to visit her in her home, it being apparent that RW would give evidence down the telephone. That visit was, in the court’s view, a valuable exercise. I was accompanied by the three members of the Bar involved in the proceedings. As I say, it was a valuable exercise, which hopefully enabled both the court and RW to gain a far more effective view of each other than can possibly be conveyed on paper or down the telephone line. It also enabled the court to have a view of her accommodation and her method of functioning within that. Her computer setup was demonstrated and the painstaking process through which she has to go to achieve the production of the impressive documents that she has consistently produced throughout the court process was demonstrated. RW, in addition to that encounter, has listened to much of the hearing over a telephone link and gave oral evidence by the same means when her time came.

[38]I propose to summarise the evidence that the court has heard under a number of headings. PTSD and capacity

[39]Professor Sensky, who was first involved on this issue, delivered his initial report on 14th September 2008. He had made a home visit for two and a quarter hours to RW the previous day. She gave a detailed account to him of key aspects of her past life and medical treatment. She was able to talk in some detail about particular events, for example, an occasion when she was left in a wheelchair in her parents’ front garden and despite identifying that and other episodes as having contributed to her PTSD, Professor Sensky did not consider that she presented with any notable distressing symptoms when she was describing these events. RW told Professor Sensky that as a result of her experiences she had become profoundly distrustful of staff associated with the PCT and the local health authority.

[40]After he left her, RW sent a lengthy email to Professor Sensky, which was awaiting him on his return to London. He was able therefore to take account of the contents of that email when preparing his report. At the end of his encounter with RW, Professor Sensky made the following conclusions,(a) she had clearly been able to attend to their discussion and showed no lapses in concentration,

(b) it was clear that she had been able to follow the discussion comprehensively and to reflect on comments that he had made,

(d) she described being effectively fully occupied in pursuing her case for appropriate treatment,

(e) she does not sleep well, and

(f) she has difficulty with decision-making when put under pressure.

[41]With regard to PTSD, during their meeting Professor Sensky asked RW what she meant by PTSD and she told him that she had to always be on the alert and that PTSD caused her difficulties coping with any form of care. If aspects of her care are handled in the wrong way, this, in her words, “Seems to trigger bad memories”. It is of interest that whilst Professor Sensky did not detect over-symptoms of PTSD during his face to face meeting with RW, despite being on the lookout for such signs, RW herself, in the post meeting email, picked up on this very point, saying, “I was having to hold back the true extent of my feelings, etc, during your visit because I was tempering my ability to keep talking without suffering any breathing/choking difficulties”. She also queries whether Professor Sensky might have underestimated the extent of her distress (as she put it), “Is it the case that you have misinterpreted my lack of physical outward signs and detachment in describing quite superficially the traumas?”.

[42]Professor Sensky’s opinion at this stage, in mid-September, was that RW had the capacity to make decisions about all aspects of her treatment and care, “She experiences distress, some of which may be associated with PTSD but, in my opinion, this does not impair her capacity to make decisions, in the sense of constituting an impairment in the functioning of the brain within the meaning of the Mental Capacity Act”. That obviously was an important conclusion at that stage, for, without such a diagnosis, the question of lack of capacity under the Act would not arise.

[43]In oral evidence, Professor Sensky explained that the particular factors that drew him away from PTSD as a diagnosis were that there was no level of distress accompanying the account of traumatic events and normally any distress that occurs as a result of PTSD is not capable of being mediated by the patient’s deliberate intervention or thinking. In order to explain RW’s presentation, Professor Sensky therefore put forward an alternative formulation, which is to be found in his report but it is not necessary to explain here.

[44]Following his assessment, RW was the subject of a comprehensive further assessment by Dr. Herbert, who came to the firm diagnosis that RW did indeed suffer from a severe and chronic form of PTSD. In addition to reading her written opinion, Professor Sensky had a discussion with Dr. Herbert in which she was very explicit that during her assessment she did observe RW to be distressed when describing traumatic experiences. Professor Sensky accepted Dr. Herbert’s observations, notwithstanding that they differed from those during his own assessment of RW. In oral evidence he explained that Dr. Herbert had conducted a more scientifically robust assessment process and that he also deferred to her judgment as she was an internationally renowned expert on PTSD. As a result, his previous alternative formulation fell away.

[45]This development in turn led Professor Sensky to change his opinion, and in his second report, dated the 30th November, he stated that he now considered that RW had PTSD and that, “Her capacity to make decisions regarding her treatment and care is impaired because under particular circumstances she is likely to show impairment of her capacity to weigh in the balance the comprehensive range of options that need to be considered to reach the decisions”.

[46]It is to be noted that Professor Sensky’s formulation on capacity is carefully worded. He is not saying that a diagnosis of PTSD will inevitably lead to impairment of capacity. He is also not saying that RW’s PTSD causes her to lack of capacity on issues of treatment and care 100 per cent of the time. It is an impairment that is likely to arise “under particular circumstances” and is likely to impair “her capacity to weigh in the balance a comprehensive range of options”. In oral evidence, he put it this way, “A discussion that included option within the West Midlands would potentially trigger a PTSD reaction, and that would make it very difficult for RW to take part in the discussions”. Later, he said that in any discussion of RW’s assessment, it was important to consider assessment in the West Midlands as one of the options in the discussion. In cross-examination he accepted that at this stage, RW had capacity to make decisions about her healthcare. It is, he said, only when something triggers the reoccurrence or reminder of a traumatic experience that her incapacity becomes realised.

[47]Mr. O’Brien put to Professor Sensky that it must be possible to put the issues for discussion to RW in such a manner that the potential trigger points were avoided and thus she was enabled to retain her current capacity. Professor Sensky’s response was in these terms, “The difficulty is that it has been impossible for anyone to understand just what the triggers are and how sensitive she is to them”. Having accepted from the court that the metaphor of crossing a minefield might be appropriate, he went on, “We do not know where the mines are, and even if the professionals were being very careful, RW may, nevertheless, be preoccupied with the risk of a traumatic reaction and would be concentrating on her defences rather than engaging with the detail of the discussion in hand”.

[48]In the body of his report, Professor Sensky explained that RW’s PTSD may impact on the decision-making process in a number of ways:(1) it is very difficult to envisage reaching decisions about RW’s health and social care without discussing options likely to trigger distress and PTSD symptoms,

(2) as a defence mechanism, she attempts to avoid considerations which might act as cues to past traumatic events,

(3) or she may act in a manner which avoids such considerations in consequence of the influence of the strong negative emotions aroused by her PTSD.

[49]Whilst Professor Sensky paid due regard to RW’s obvious intellect, and concluded that there was no evidence that she has any impairment in understanding or retaining information, and supported the need for information to be given to her in a manner that optimised her ability to process it, he nevertheless concluded that her condition at times would compromise her capacity to weigh in the balance the various options for her treatment and care. In line with his revised opinion, Professor Sensky completed his COB assessment of capacity form on 28th November in like terms.

[50]In oral evidence, Professor Sensky put forward a further scenario, referring to the impact on RW’s ability to impose her own thoughts on the normal processes of PTSD. He considered that in any discussion where topics might arise that might lead to distress, a person in RW’s position would become preoccupied with seeking to avoid the distress and this preoccupation would affect their capacity to take on board and to take part in the process. If any discussion actually led to an event that triggered her PTSD, then it is likely, he said, that RW would disassociate herself from the process. Professor Sensky explained that reactions to trauma are very primitive, such flight, fright or freeze, and in such circumstances a person would be unlikely to be able to think about the details of the discussion at the time.

[51]On the issue of capacity, Dr. Bell gave evidence. He said the issue arose because RW’s healthcare is jeopardised by her views on the inherent threat imposed by the regional medical services. In oral evidence, his overview was that her capacity for decision-making on certain healthcare matters is compromised. In particular, he questions the intensity of RW’s opinion that she had been systematically abused, physically, sexually and in respect to her healthcare needs by a whole range of medical professionals at all levels. It was Dr. Bell who advised that a psychiatric opinion be sought, but having now read the reports of Professor Sensky and Dr. Herbert, Dr. Bell confessed that he found it impossible to make a judgment on the issue of capacity by relying on those reports. Consequently, he has focused on RW’s needs and perceptions and the options available to optimise her care and condition. His perception was that even when the unit at the Royal Buckinghamshire Hospital was identified, and was willing to work with Dr. Herbert, RW put barriers in place that effectively led to the withdrawal of the offer of that place. Dr. Bell sees real benefit in RW being assessed and treated locally under the general coordination of her GP. In his view, RW is incapable of seeing the logic and the benefits of this option. There is, in his view, a real paradox between her goals, which are to achieve optimum healthcare, and her approach to assessing that care, which is to erect barriers to achieving what is on offer. In short, she is unable, he says, to control her underlying fears sufficiently to access the healthcare she needs, and, on that basis, Dr. Bell says that RW lacks capacity, even though there is no clarity as to what her particular mental health condition may be.

[52]RW herself obviously gave evidence on the issue of capacity. Before she turned to that, she commenced her oral evidence with an observation which indicated to the court that she had some high level of insight into one aspect of her case, which is only in fact hinted at in the expert reports. The court noted this when she said, “There is concern that my paralysis may be related to psychological factors”. But having made that observation, RW then moved on, in response to questions, to describe her current care regime, and I have already summarised the basis of it. She explained that her whole day was taken up with survival or with organising her care for the next day. She said, “I sleep by exhaustion in front of my computer”. She is attended by a rota of three care workers -- not, as I understand it, any longer employed by the local health services -- who come on a rota, which she arranges. She is also supported by the GP, Dr. Rolston, who she says was, “Very, very supportive”. Finally, she has the support of PJ, who she met as long ago as 1977. She said they became partners in due time and became engaged in 1983. PJ, who the court met briefly during the visit to RW’s house, visits her every day and assists in the provision of her needs.

[53]RW said that she accepts that her PTSD could compromise her ability to make a decision. She said if any PTSD is triggered then, “I cannot really hear and take in what is going on, or I am fearful of what is going on, so I am unable to make a decision”. She explained that at present she receives material in a particular format that she requires and if this happens, she can cope with the material without triggering undue symptoms. She prefers the material to be in a written form, so that she can control and understand the questions and issues that are raised and then embark upon, and not miss any part of, any answer that is required from her.

[54]In relation to Professor Sensky’s view, and that adopted by Mrs. Justice Parker in her judgment, that at times RW may not be able to weigh matters in the balance, RW said she respect the professor’s opinion but he did not understand in totality the condition of PTSD, and she said, “I can always weigh up the options but my difficulty through PTSD would be to communicate what I wanted to say”. She was asked about what might trigger an adverse reaction. She said that would happen if she were to go to a West Midlands hospital and what would occur would be, “I would go into complete disassociation and cut myself off from the world. This is a type of freeze response as identified by Dr. Herbert. I know that it would probably cause my death, and there is no way that I would agree to admission to a hospital in the West Midlands”. She said that she would accept an admission outside the West Midlands, provided it had the support of Dr. Herbert, and, “I would make no other conditions at all”. She explained that he email to the Royal Buckinghamshire Hospital in December had been informed by the report of Dr. Herbert that she received a day or two earlier.

[55]Dealing with potential restriction on her liberty, she explained that her physical disability does not actually restrict her liberty, as it does not restrict her independent nature. She said, “The PCT, on the other hand, seek to take over my life. They have unlawful detention over me now, in the sense that it does not matter what I want. The PCT will not honour my wishes. I truly believe that the PCT mean me harm”.

[56]Dealing with the future beyond any assessment, RW said, as I have already described, that she could not see any care package that could accommodate her PTSD in the West Midlands unless the care was simply a repeat of the current independent arrangements that she makes, and in this regard, it seems to the court at this stage, that she must be right. She receives assistance in the form of finance from the Independent Living Fund of some £2,500 a month. She explained that the local Social Services department is also a major PTSD trigger for her and she cannot have any contact with them.

[57]Going back to the triggers in general, she said that, “In PTSD your mind is racing with the triggers and I’m always trying to protect myself. Triggers may arise many times throughout the day. If anything, it is worse now”. She accepted there was no fixed list of triggers but accepted that in the past she has said, and that it is the case, that such general matters as uniforms or ambulances, or indeed the presence of other disabled people, might be a trigger. She accepted that no-one could predict what her PTSD triggers would be if she was placed outside the West Midlands, but she also said that no-one had ever given her tuition in what she should do to avoid the triggers. She said that if she went to the Royal Buckinghamshire, or another hospital similarly placed, she would expect them to talk to her normally but in relation to important decisions, she would hope that they would give her the details of those in writing so that she could take those on board in her own way.

[58]Towards the end of the evidence, she said, “I feel the PCT mean me harm. They taunt me because I am still alive. Their policy is to target disabled people, but I have not succumbed”. When asked what her reaction would be if it were not possible to be admitted to a unit outside the West Midlands, RW said she would want to know the reasons why it was not possible, and she said, “I would say that they have a duty to find a solution that does not trigger my PTSD and so they have to find a solution which is not in the West Midlands”.

[59]Finally, Dr. Claudia Herbert gave evidence. She said that during her assessment, RW completed a life events checklist, “Which indicated that she had both experienced and witnessed multiple and repeated traumas of emotional, physical and sexual abuse throughout much of her life with the earliest traumatic memory going back to when she was about two and a half years old”. She said that RW described feeling intense fear, helplessness and horror in response to those experiences. RW described to Dr. Herbert the full range of her PTSD symptoms and said that they started in about the year 2000. Dr. Herbert considered that RW fully met the criteria for diagnosis of PTSD in every single respect. She concluded that RW seems to be suffering from psychological re-experiencing reactions of a severe to extreme nature. The diagnosis, so far as Dr. Herbert is concerned, is that she meets the criteria for PTSD of a “severe and chronic nature”. There is in fact no formal diagnostic criteria yet recognised for complex PTSD, meaning stress arising from a number of different causes, but Dr. Herbert considers RW would certainly meet that criteria were it formally available. In oral evidence, Dr. Herbert said that RW’s PTSD is more complex, in the sense of her flashbacks, intrusions and nightmares, including many, many facets and with a number of triggers being manifold.

[60]Dealing with the effect of the triggers, Dr. Herbert in her written report, at page 148 of the bundle, paragraphs 111 and 112, said this (it is worth quoting substantial parts of this into the judgment), “In this context it would seem important to explain that the neuro-physiological ‘freeze’ response involves simultaneous activation of both the sympathetic and the parasympathetic nervous system. Both are directly opposed branches of the autonomous nervous system, are not under conscious human control and normally, under all other circumstances in life, do not operate at the same time. Under all other circumstances in life, therefore, the body operates either under the control of the branch of the parasympathetic nervous system, which is generally more responsive during relaxed, calm states of mind, or under the control of the branch of the sympathetic nervous system, which is generally more responsive during states of high arousal and alert. There is only one circumstance in life when both systems operate at the same time. This is when the organism perceives itself to be in imminent danger of extinction and when the mechanisms of ‘fright’ or ‘flight’ are not possible in a threatening situation. The ‘freeze response’ literally numbs, shuts down and freezes parts of a person’s perceptions of their body due to a parasympathetic nervous system activity, while at the same time it makes the person feel internally uncomfortably over-alert and over-aroused due to a sympathetic nervous system activity which operates simultaneously. Evolutionary, the numbness literally anesthetise parts of the person’s bodily system which seems to be a design of nature that prepares the organism for the possibility of imminent death similar to the mechanism of a mouse feigning death when attacked by a cat in order for death not to be so painful”. Later she says, “It seems that the nature of RW’s physical disability would have subjected her inevitably to the neuro-physiological freeze response in traumatic situations. The freeze response is the most serious of all trauma responses and would not only have repeatedly exposed her neuro-physiological system to great strain but would have left a lasting severe ‘shutdown’ effect, reducing her ability to experience emotions and physical sensations in her body. Indeed, as my assessment indicated, RW does suffer from symptoms of marked emotional numbing, compromising also her ability to feel interpersonal connection”.

[61]The next paragraph I am also going to read into the judgment, “Fourthly, it is important to understand that each time trauma memories are retriggered, the human brain lives through the same neuro-physiological processes as during the time of the original storage of these memories. This is not only experienced as intensely distressing to the person re-experiencing these emotional and physiological responses, as well as the potential shutdown, freeze and numbing, but it also poses a great strain on the person’s neuro-physiological system, leading to utter chronic exhaustion as well as the potential for increased vulnerability to disease. For the person experiencing this, it is as if they are kept in constant trauma, with no possible way out, as the re-triggering of these memories is not under their conscious control. They feel totally overwhelmed and powerless in these situations. Therefore, in order to cope with this unbearable predicament, most people affected have to develop strategies which enable them to reduce the number of times triggers occur in their day to day life. RW’s strategies are numerous. For example, they include trying to avoid talking or thinking about any aspect related to her traumatic experiences, avoiding places, people or situations that remind her of her past traumatic experiences, such as any involvement with the West Midlands PCT, or carers, or other health or Social Services professionals related to the West Midlands region, being left in the care of male nurses, and many others, as well as certain dissociative mechanisms during which she disconnects from current daily life and her disassociation takes her into a temporary trance. The consequence of these compensatory strategies is that while RW may, to a certain extent, succeed in reducing the number of times that she is re-exposed to further re-traumatising triggers in her daily life, in order to do so she has almost completely to withdraw from all aspects of functioning in order to avoid any potential triggers, seriously affecting the quality thereby and purpose of her present life. This mechanism provides a rationale for why RW should not be exposed to an MDT assessment within the West Midlands region or any assessment situation which has not been agreed to by her, as this would move her into a position of constant re-traumatisation, which would present a major health risk to her”.

[62]I have taken some time in reading those two sections out because that is evidence that I accept and it describes in very graphic terms just what RW would be likely to experience were she to be put in a situation which caused a significant adverse trigger of her PTSD symptoms.

[63]In oral evidence, Dr. Herbert explained that RW has a number of symptoms which fall outside the PTSD criteria as it is presently described. They do fall within the dissociative range, for example, disconnecting and emotionally retracting into herself. Dr. Herbert explained that an individual would develop a range of survival based coping strategies, some of which will be autonomic responses to stress, with the result that the person, particularly if they have high intellectual function, may present to the outside world as very coping while inside they are suffering terribly. This explanation may in part account for Professor Sensky’s perception of RW during his own assessment. With regard to the ‘freeze’ response, Dr. Herbert said that it was not itself life-threatening but was highly uncomfortable and distressing, it was an automatic response, which is the last resort to save life in circumstances in which a person or animal perceives that life is imminently threatened. It may have an effect on the internal organs and on the immune system if it is held in place for a time. Dr. Herbert is plain that RW genuinely believes that she faces the prospect of extreme abuse or death if placed in the care of health professionals in the West Midlands. Dr. Herbert said that in her opinion it would be unethical to expose RW to processes in the West Midlands.

[64]In her main report, Dr. Herbert offers and eight-point plan for the approach to be taken by professionals to working with RW that would optimise her ability to take part in and benefit from any intervention. Those eight points are set out at page 150 of the bundle onwards. In cross-examination, Dr. Herbert accepted that to meet all eight conditions may cause difficulties in finding any placement and that there was a need to be realistic to see to what extent each point could be met and to what extent compromises may have to be acceptable. In any event, and throughout the process of admission and assessment, there was a need to include RW in what was being discussed and undertaken as far as possible. Dr. Herbert’s view is that RW’s condition is so complex that it will be impossible to avoid all triggers wherever she is placed. Dr. Herbert accepts that the triggers seem to include generalised matters, such as medical related uniforms, ambulances and the presence of disabled people. Other triggers may be more subtle. In cross-examination, Dr. Herbert agreed that there will be times when it is likely that RW would not be able to be sufficiently involved in the decision-making process as a result of her PTSD. This would affect both her ability to weigh the issues and also to communicate her response. Temporarily, she may be unable to concentrate on relevant information and so will not be able to understand or take in material or she may go into a non-verbal response and be unable to communicate. In passing, it is of note that what Dr. Herbert says about the inability to take in and weigh material formed the basis of Mrs. Justice Parker’s judgment. RW disagreed with that basis of holding that she lacked capacity but accepted that there may be times when she is unable to communicate. It seems that Dr. Herbert takes the view that both scenarios, weighing and communicating, are likely and would affect RW’s capacity at the time that they were in operation. Dr. Herbert considers that at present, RW is coping and is in control.

[65]Turning to another topic, in short terms, of the evidence, namely litigation capacity, Professor Sensky was asked about this, and he accepted that RW really met all the criteria in the classic definition of litigation capacity. In particular, she understood the nature of the proceedings and the role of her solicitor and had the ability to communicate her instructions, as she sees them, to her solicitor. RW herself gave evidence about this and considers that she has capacity in respect of operating within the litigation, and her own legal team obviously take the same view.

[66]The next topic is the options available for the multidisciplinary team assessment. Dr. Bell is looking for an assessment process which meets three distinct conditions: her congenital visual impairment, her tetraplegia (together with the other complications), and her PTSD. He voiced the opinion that this form of assessment, from a purely medical perspective, was needed as long ago as March 2008. He regards the current level of provision for her as falling well below what anyone would require. What is needed within any assessment process is an ability to access acute care, an ability to undertake the assessment and an ability to plan and commence a rehabilitation process at the end of that, and he says that the optimum location is a regional spinal injuries unit but it would be possible to arrange the work at one or more other facilities, perhaps with RW moving between them at different stages of the work. He has canvassed, as I have said, a wide range of suitable units across the country. His approach has been doctor to doctor, with the clinical director of each unit, but generally the response he received was not favourable. In particular, units were reluctant to take an out of region placement in any event, and also they would need reassurance that there would be no delay in setting up and achieving the discharge of RW at the end of the process so that no bed blocking would occur at their unit.

[67]He dealt with, as I have already described, Dr. Gardner’s intervention, and in relation to Dr. Gardner’s response to RW’s email, he said, “Dr. Gardner and his team looked at that email and said, ‘How on earth are we to progress the assessment in a reasonable time if we’re having to work in a way which is not objective in terms of knowing the triggers which may affect RW and in balancing the needs of the other patients who come into the unit?’”.

[68]RW also, in Dr. Bell’s view, created difficulties with respect to admission to Stoke Mandeville and indicated to Dr. Bell that wherever the assessment is undertaken, there is a risk that the process will trigger her PTSD symptoms. There is a need, he says, if possible, to assess her neurological status prior to admission and, with this aim in mind, he has contacted the National Neurological Centre in Queen’s Square in London. At the time that he gave his evidence there had been no response from that unit but the court has today seen an email trail which indicates that the referral is at least being actively considered there.

[69]Dr. Bell does not consider that Dr. Gardner at the Royal Buckinghamshire Hospital has totally closed the door, but Dr. Gardner needs, he says, to know what he is dealing with, from a neurological perspective, and from a mental health perspective. The importance, therefore, in the court’s view, of a neurological assessment, coupled with a greater degree of clarity, that may now exist as to RW’s working mental health diagnosis, is that if the neurological assessment can be achieved, this may go a long way to satisfying Dr. Gardner’s stipulation that his unit would not consider re-admitting RW until there is a clear diagnosis of her condition. Overall, however, Dr. Bell detects a professional unwillingness across the country by the units he has contacted to take on what is clearly a very challenging case. A further difficulty is identifying who is going to coordinate the whole process, particularly if a number of different units and specialists are involved. Whilst the GP is obviously a candidate for this role, Dr. Bell, understandably, questioned whether this was something within the capacity of any GP to undertake.

[70]Dr. Bell, as I have already indicated, considers that there is substantial benefit in RW being admitted locally in the Midlands. He rehearsed the benefits of work being undertaken by a local unit, for example, the privately run P Hospital in Birmingham. He said,(1) the need to travel a long distance is avoided,

(2) it is likely to reduce the length of the inpatient stay,

(3) the support from and communication with the GP is likely to be easily accessed,

(4) it is a private hospital, and therefore avoids the direct NHS trigger for RW,

(5) the GP can specifically select from known local specialists, both for their professional skill but also for their ability to engage successfully with RW, and

(6) as a commercial organisation, they are unlikely to object to the admission on the grounds of possible delay and bed blocking.

[71]It is right to record that in cross-examination, Dr. Bell was critical of Dr. Herbert’s role in the proceedings, on the basis that in his view, Dr. Herbert had not delivered a strategy for modifying RW’s reaction to any medical intervention, which had been the primary goal in instructing Dr. Herbert. In this he chimes a chord with the evidence of RW which I have already summarised, to the effect that no-one has actually taught her how she can approach these matters in a safer emotional fashion. He said that Dr. Herbert has listed a range of observations but there was a need, in his view, to marry these up with what is practical and what is feasible.

[72]When he gave his evidence, Dr. Bell had not seen RW’s recent core statement. In that, she indicates a willingness to progress with a placement at Stoke Mandeville or at the Royal Buckinghamshire Hospital. Dr. Bell considered that there was a need to put this apparent change to Dr. Gardner, who the court now understands is connected with both of those units, and to receive his response. Pausing there, that certainly seems to be a step which should be taken as a matter of some urgency.

[73]Looking at the mechanics last of all, he considered that the period of assessment would be some three weeks in all and a separate neurological assessment would take most of a working week.

[74]Dr. Rolston gave evidence on this point, and he said that, medically, RW is at present doing surprisingly well. Her care package is, if anything, worse than it was in December but her health has borne up better than he had expected. The most pressing problem is her bowel care and the provision of enemas is not regular. He too agreed that a regional spinal unit was the optimum placement. He says that he is the only medic to see her and he only examines her once or twice a year. She is a very private individual and that is the most that he feels that he can intrude upon her. Over the 18 years that he has known RW, he said he had not seen any response of distress similar to that reported by Dr. Herbert during her assessment, but, he told me, “RW is very controlled when I am visiting her”. He would support a referral to a place outside the West Midlands, if that could possibly be obtained. On the issue of capacity, he said that he was not sure about her capacity now. He can understand why she says “no” to what is proposed, and he would be inclined to respect her decision. He would not say that she lacked capacity in a situation that fell short of a true emergency.

[75]Moving on, therefore, to an acute admission, after he visited RW on the evening before he gave his evidence to this court, Dr. Rolston, who had discussed the reality of the situation were RW to need an emergency admission, received an email from her dated the 24th February. That email, which the court has seen, makes it clear that even in extreme physical circumstances, RW would refuse admission to a unit in the West Midlands, even if it meant that she would die at home as a result. Her reasons are clearly stated and, whilst they include the fear of being subjected to a fresh traumatic event, they are largely based upon her inability to contemplate the effects of being re-traumatised simply by knowing that she is in a West Midlands facility. On this point Dr. Herbert said that if an emergency admission to West Midlands did happen then it would be very helpful if there was prior knowledge that could travel with RW (in the ambulance, as it were) as to her condition, so that the receiving hospital had that information at the moment they first encountered her. She said, however, that the whole experience would be bound to trigger RW’s PTSD symptoms.

[76]Dealing finally with topics, and shortly, on best interests, Professor Sensky effectively supported the eight-point approach put forward by Dr. Herbert and supported Dr. Herbert being involved in the process. In oral evidence, he characterised RW’s approach as being that under no circumstances should anything be done that risked inducing her trauma. He had, he said, two separate difficulties with that. First, there can be no guarantee of avoiding such a trauma in any location. RW has not experienced the delivery of any care outside the West Midlands and her PTSD may be triggered as a result of that other care. Secondly, Professor Sensky does not share Dr. Herbert’s view as to the extreme risks of any re-traumatisation. He does not put credence on the literature relied upon by Dr. Herbert on this point as it has not been peer reviewed. Professor Sensky is clear that the best option now is for there to be a multi-professional and multi-speciality team assessment of RW’s condition and her needs. He does not consider that there is any value in trying to settle RW in a new homecare regime, or a nursing home, before undertaking the assessment, for two reasons. First of all, even if she was settled, she would have to move to the hospital for the assessment and become an in-patient, and, secondly, the assessment is needed before you devise a new care regime, in order to plan for her care at home and in the nursing home.

[77]Finally, Professor Sensky advised that it would be important for RW, and those involved in any assessment, to have a known and established mechanism set up by which she could raise potentially stressful issues with the staff and have them dealt with.

[78]After that extensive review of the evidence, I now turn to my own evaluation of all of these issues under a number of headings. CAPACITY Diagnosis

[79]A diagnostic threshold based on PTSD is accepted for the purposes of this hearing. However, the PCT has significant reservations about this diagnosis. They point to the difference between the evaluation given by Professor Sensky and by Dr. Herbert of the assessment interviews conducted by them only a short period apart. Having heard Dr. Herbert’s explanation of survival based coping strategies, on the balance of probabilities the court accepts that that mechanism, or something similar, was responsible for RW’s presentation during Professor Sensky’s interview. In addition, both Professor Sensky and Dr. Herbert have explained that Dr. Herbert’s process was deliberately more traumatically challenging than Professor Sensky’s, with the result that Dr. Herbert observed reactions that the professor did not. Thus, whilst the presentation seen by Professor Sensky is obviously compatible with a person who does not suffer from PTSD, I prefer Dr. Herbert’s evidence that this presentation is in fact very much part of the symptoms and the defence mechanisms of the disorder itself.

[80]Beyond that point, however, in my view the PCT is right to be cautious about accepting PTSD as being the final or comprehensive mental health diagnosis. RW herself accepts that there is a view that her neurological symptoms and paralysis may be related to psychological factors. Until a neurological assessment is available, such thoughts remain no more than reasonable conjecture. A further factor relates to the absence of a factual baseline to evaluate the origin of the traumatic experiences which underlie the diagnosis of PTSD. The experiences recounted by RW are many, varied and, on occasions, extreme. They may well all relate to actual abusive events, but if they do not, then, one anticipates, the diagnosis of PTSD, even of a complex or severe nature, cannot stand, or at least cannot stand alone. For these reasons I believe that Professor Sensky is right when he describes the diagnosis of PTSD as being “currently the most parsimonious”, and as “an appropriate working diagnosis” or “a starting point for further assessment and investigations”. It is a diagnosis that would seem accurately to describe RW’s presenting mental health condition. Whether it represents the entirety of the mental health picture, or simply the outward observable layer of an altogether more complicated picture, remains to be seen. But despite those various caveats, I accept that the current evaluation more than satisfies the diagnostic criteria in s. 2(1) of the Mental Capacity Act. The matter

[81]For reasons that can be briefly stated, I prefer the more detailed issue specific exposition suggested by the Official Solicitor to the more generalised approach of the PCT. In a case where it is accepted that the patient does not at present lack capacity, but may lose it temporarily in specific circumstances, it seems to be inappropriate to make a generalised and unlimited declaration as to her lack of capacity in relation to all her healthcare and personal care needs. The court must respect the principle that, so far as possible, an individual who has capacity should be assisted to retain that capacity. An extension of that principle must be that the court should not declare that that individual lacks capacity in circumstances where it is likely that they will not in fact lack it from time to time. What is the “decision” that RW may be called to make in relation to admission for MDTA?

[82]The PCT submit that it is a decision which must include at least, as a fallback position, admission to a facility in the West Midlands. In considering whether that is or is not so, it would seem to me to be wholly artificial for the court to conduct the evaluation of capacity at this stage without having some regard to the view it has formed on the “best interests” issue. Put another way, when considering what “decision” falls for determination, the court must have some regard to the reasonableness or otherwise of the proposals that are put up for consideration. The reason for making those observations at this stage is because I have reached a very clear view as to the merits of the proposal that RW should be admitted for the MDTA to an NHS or private hospital in the West Midlands at the present time. On the basis of the evidence that this court has heard, the prospect of admitting RW to a West Midlands facility for the purposes of this assessment is, in my view, totally unconscionable. Both RW and Dr. Herbert described the effect that such an admission would have on the patient. I have read from Dr. Herbert’s report in that regard. It would be deeply traumatic, and a deeply harmful experience, with the prospect that that trauma and harm would be experienced throughout the length of the admission. RW would be likely to go into a complete disassociation and exhibit the “freeze” response described by Dr. Herbert. Of the descriptions given both by RW and by Dr. Herbert, this would seem to be similar to entering a type of catatonic state. It is almost impossible to envisage how an assessment of RW’s multiple difficulties could even be attempted were she to be in such a condition. The court has certainly not heard any evidence from the potential assessing clinicians as to how they would approach the assessment if RW was in such a state and therefore totally unavailable to interact with them.

[83]Another relevant factor is that, on the evidence currently available, the search for resources outside the West Midlands has not yet been completed. There remains the possibility of admission to Queen’s Square and the consequent reconsideration of the case by the Royal Buckinghamshire Hospital. In relation to the National Spinal Injuries Unit at Stoke Mandeville, they have recently been contacted in general terms and Dr. Gardner is involved with the management of that unit as well. There remains, therefore, the possibility of that unit also being canvassed.

[84]Finally, whilst the PCT has, I accept, only a limited persuasive ability to secure resources outside their region, there is the potential for raising this issue at a national level, and in due course I propose to direct that a report is provided by the Chief Executive of the NHS pursuant to the court’s powers under s. 49 of the Mental Capacity Act.

[85]For all these reasons, it is, in my view, both inappropriate and premature to require either RW or the court to consider deciding in favour of an admission to a West Midlands unit. That option cannot sensibly be on the agenda at present. More work needs to be done to try to secure a placement elsewhere. In making that observation it is right to stress that as part of any future process, RW herself needs to take on board her capacity to influence whether or not she is accepted by a unit. Whilst I have accepted the explanation of the motivation and process that led to her writing her email to the Royal Buckinghamshire Hospital, I anticipate that she can see how profoundly unhelpful that intervention turned out to be. That, and her refusal to go there for a short stay, removed, at least temporarily, an option that she and all the other parties hoped would provide a workable solution.

[86]I endorse the evidence of Dr. Herbert and Professor Sensky to the effect that Dr. Herbert should be actively involved in both the referral process and in monitoring the progress of the assessment as it goes on, but that intervention is appropriate at a doctor to doctor level and not otherwise. From her evidence, I understand that RW accepts that this is the case and that her only stipulation now is that Dr. Herbert should be involved. RW trusts Dr. Herbert and she should therefore rely upon her to ensure that optimum arrangements are in place to moderate the impact of the assessment process on RW in PTSD terms.

[87]The change, as I perceive it to be, that has taken place during this hearing is that Dr. Herbert herself has accepted that a total adherence to each of her eight principles may take this case outside any of the resources that could realistically be provided. It is accepted that it is unlikely that adverse PTSD triggers can be totally avoided, wherever the assessment takes place. This is particularly so as the full list of triggers is unknown, with the risk of inadvertent re-traumatisation being all too clear. Having heard Dr. Herbert, the court is reassured that she will be realistic about such matters when discussing what is actually achievable on the ground by the clinicians at any particular unit.

[88]The result of the considerations that I have just listed is that even if I were to hold that RW lacks capacity, at this stage, and on the present evidence, I would not, and could not, declare that it was in her best interests to be admitted to a unit in the West Midlands. As time goes on, that situation may change. If, after a truly exhaustive search, a non-West Midlands alternative cannot be found then the “decision” will be a stark choice between admission to a West Midlands hospital for the assessment or no assessment taking place. If such a choice is put before the court, the court would need to have evidence from the clinical team who would be charged with carrying out the task and, in particular, would need to hear from them how viable any assessment could be if RW were to react to her admission in the manner that is anticipated. But that, one hopes, will not be a stark choice that is put before either RW or the court but, if it is, it is a matter for another day. Circumstances where RW lacks capacity

[89]On the basis of the evidence of both Professor Sensky and Dr Herbert, and on the balance of probabilities, there will be occasions in the future, if -- and I stress “if” -- RW experiences a significant PTSD reaction, when she will become unavailable, to put it in precise and neutral terms, to make decisions about her healthcare for as long as the adverse reaction remains in place. As I understand her evidence, RW accepts that that would be the case, particularly if she were admitted to a unit in the West Midlands. Where she and the experts, and Mrs. Justice Parker, differ is the mechanism that would render her “unavailable” to decide, RW described as being able to be aware of and understand what is going on, despite being in the middle of a severe defensive reaction. She, however, accepts that she would be unavailable to take part in any decision because she would be unable to communicate with anyone, thus referring to s. 3(1)(d) of the Act. Dr. Herbert says that RW is right but that she would also be unlikely to be able to understand what is going on and would be unable to use or weigh up relevant information, therefore bringing in s. 3(1)(c). Professor Sensky agrees that RW comes within s. 3(1)(c) but also believes that RW’s efforts to defend herself from unwanted triggers must lead her to be concentrating so much on that defensive process that she is unable to take in, and therefore understand, relevant material (s. 3(1)(a).

[90]In this regard, having now been exposed to RW both orally and on paper, it does not seem to be the case that that mechanism is in play to that extent at present. Part of that may be that RW is assisted in assimilating information and material in written form and applying herself to it at a time of her choosing. If that is so, then it is no more than a working out of the strategy which is encouraged by the Mental Capacity Act itself to support her decision-making capacity.

[91]The debate between whether RW’s lack of capacity, in the event that she experiences a significant adverse reaction, comes within (c) or (d), or both, is a degree academic as a resulting loss of capacity is the same, but on the balance of probabilities, and relying upon her extensive experience of these cases, I would prefer the opinion of Dr. Herbert and hold that there would be a lack of capacity on both bases. Does RW lack capacity now in relation to admission for an assessment?

[92]In relation to admission to a West Midlands unit for assessment, the answer is that at present RW does not lack capacity on that issue, for the following shortly stated reasons, in addition to the fact, as I have explained, that this decision cannot reasonably be on the agenda at present in any event. Firstly, RW is not at present suffering from significant adverse effects from her PTSD sufficient to tip her over into the state that both she and Dr. Herbert describe. Secondly, she will have been severely tested by the process of taking part in these proceedings, yet she has not apparently succumbed to a reaction of that degree. Next, she has played as full a part in these proceedings as her physical disabilities would permit, and, on an intellectual level, the part she has played in the court process has been 100 per cent. It is outside the experience of any involved in this case, particularly of note from the office of the Official Solicitor, of the subject of mental capacity proceedings to give live evidence, and yet here is RW making a full evidential contribution both on paper and orally. On this point, Mr. O’Brien effectively submits that on the issue of current capacity, the proof of the pudding is there to be observed.

[93]In response, the PCT submit that on her own evidence, RW is experiencing adverse PTSD triggers on a daily basis and many times each day. That is right. But just as the diagnosis of PTSD does not of itself mead the conclusion that RW lacks capacity, nor does the fact that she is experiencing adverse triggers on a very regular basis. The missing link is that there is no current evidence that the experience of those triggers is pushing her into the state described by Dr. Herbert.

[94]All the evidence on this point is in fact the other way. RW is at present palpably able to meet each of the four requirements in s. 3(1), and, in consequence, the PCT has failed to establish a present lack of capacity, even in relation to admission to a West Midlands unit. The fact that she is unable to contemplate agreeing to such an admission does not mean that she lacks the capacity to hold that view. She holds it because of the consequences that she believes would flow from such an admission as a result of her PTSD. She is not alone in that opinion. It is indeed at present shared by Dr. Herbert, and, for that matter, the court.

[95]In relation to admission to a unit outside the West Midlands, the same basic approach must apply. During the course of this hearing reference has been made to “known knowns and known unknowns”. A “known known” is how RW is likely to react if admitted to a West Midlands unit. A “known unknown” is how she may react is admitted to a unit outside the region. She has never received treatment outside the West Midlands. There is an assumption that she may not be so adversely affected by PTSD triggers at a remote unit but, in reality, how she will respond is unknown. Given the general nature of some of her triggers, there clearly is some ground for fearing that she will undergo an adverse reaction wherever she is. If in time she is admitted, or attempts are made to admit her, to a remote unit, and unfortunately RW succumbs to overpowering symptoms, then the question of capacity to consent to such a placement, and also the question of whether it would be in her best interests to continue with such a placement, will fall for consideration, but at present that, happily, is not the case and RW plainly, in my view, does not lack capacity to decide, and be fully involved in, any decision about a remote placement. Does RW lack capacity now in relation to admission for emergency treatment in the West Midlands?

[96]With respect to a true emergency, I consider that the answer to that question of capacity must be different on this point to the answer I gave in relation to the assessment. In such a situation, RW would be faced with the awful decision that she describes so clearly in her email to Dr. Rolston and elsewhere, namely whether to be admitted to a local hospital, and thereby access potentially life-saving treatment, or to die at home. RW is unable to contemplate admission to a West Midlands unit on any basis, as her email shows. That she is unable to do so is a direct consequence of her PTSD and she fears the adverse reaction that that condition would generate were she to take that step. In this regard, and in these precise circumstances, where there would be no viable alternative, other than death, for an admission to a local hospital, this case is similar to the needle phobia cases such as Re MB [1997] 38 BMLR 175. At the moment of crisis, when she was actually faced with a choice between succumbing to whatever had afflicted her, or going to a local hospital, it is unlikely, I find on the evidence of Dr. Herbert and Professor Sensky, that she would be unable to weigh up or communicate matters related to the decision and would be in the very state that I have earlier described as robbing her of capacity. On that basis, I hold that RW would lack capacity in a truly emergency situation.

[97]The reason for stressing the phrase “truly emergency situation” is that not all life-threatening events come on in a short space of time. Given the geography of the region, I suspect it would take an ambulance at least an hour to get from RW’s location to a hospital beyond the borders of the West Midlands health region. If RW were to experience a dangerous, but not immediately critical, deterioration in her physical health, then it is not necessarily the case that she would lose the capacity to consider admission to a hospital outside the West Midlands. Best interests

[98]In terms of the assessment process, I have already stated firmly my view that at present it would not be in RW’s best interests to be admitted to a unit in the West Midlands. In any event, given my conclusion on the issue of capacity, that option does not fall to be considered at the best interest stage.

[99]In so far as emergency admission is concerned, the position is different. In such a true emergency, it is likely that RW would lose the capacity to consent or refuse to consent to treatment in the West Midlands if that were the only life-saving option. In considering best interest, I have to take into account each of the matters in s. 4 of the Act and, in particular, RW’s firmly stated wish not to be admitted to a West Midlands unit even in an extreme case.

[100]Despite hearing what RW says loud and clear, and despite understanding and empathising with the reasons that she gives, I am nevertheless driven to conclude, as did Mrs. Justice Parker, that it would be in her best interests to be admitted to a West Midlands hospital if there was no viable alternative available, provided that such admission was for the shortest time commensurate with providing RW with emergency life-saving treatment. Once any emergency has passed, the balance between receiving treatment and the adverse consequences arising from her PTSD must tilt the other way and it will become in her best interests either to be transferred to a hospital outside the region or back to her home. I therefore propose to make declarations in due course in the form of paragraphs 3 to 7 of the draft order, subject to summary drafting to reflect the limit on the duration of her stay that I have described above. European Convention of Human Rights, Article 3

[101]In the light of the decisions to which I have come, it is, in my view, unnecessary to express a detailed or final conclusion on Mr. O’Brien’s submissions based on Article 3. Having considered the matter further, I would, in any event, have sought additional submissions on the point than were possible earlier this week. Whilst I certainly do not disregard or rule out the potential validity of the argument, I am concerned to understand with more clarity the manner in which the ECHR authorities define “treatment” for these purposes, as the inhuman or degrading consequences that may flow in this case for RW from an admission to a West Midlands hospital would not, on one view, fall from the “treatment” that would be offered to her but from her own internal reaction to that treatment. This may be an issue which will fall into sharper focus in the event that no alternative placement outside the West Midlands can be identified after further time, and, of course, the court will be pleased to hear further submissions on the point at that stage. Section 49 report

[102]It will be apparent from all that has gone before that I consider this case and the predicament of both RW and the PCT to be both highly unusual and exquisitely difficult. This difficulty in part flows from the administrative position of the PCT and the region in that neither is able to direct an out of region resource to take RW as a patient. In those circumstances I intend to seek the much needed assistance of higher authority in the NHS by asking for a report under s. 49(3) from the Chief Executive of the NHS outlining what options can be made available for RW’s assessment. It is almost impossible to envisage other circumstances where a patient needs health services which are available locally but for almost insurmountable reasons cannot be provided without causing the patient significant harm. A “national” solution is therefore required and the court, and no doubt the parties, will be extremely grateful for whatever assistance NHS headquarters may provide. Parallel plan

[103]During the course of submissions the idea of a PCT developing plans for RW’s care that may run in parallel gained weight. The two main parallel arms -- but there may be others -- would be,(a) the search for an out of region placement, and

(b) a firmed up and detailed plan for admission within the West Midlands using identified resources. In the court’s view, a prerequisite of each option is for the PCT to fund the continued involvement of Dr. Herbert, so that she may engage with any unit that is identified, either within or without the West Midlands, to assist in their planning and preparation for RW’s admission. It may also be some assistance if Dr. Herbert can be tasked to provide to RW to improve her ability and develop her strategies for managing her reaction to any triggers.

[104]In the meantime, and barring a crisis, RW will remain at home. In this regard a small, but not insignificant matter, arises which the court has,(a) heard no evidence about, and

(b) lacked any power in respect of. Thus, what follows is no more than a request. During the court’s visit to RW’s home it was apparent that a new hospital bed had been delivered to the property. Despite its narrower width, RW would prefer to have the use of it because the hydraulics on her current bed are no longer sound and she cannot raise and fix the end of the bed in place. RW explained that the new bed could only be installed if she is provided with the necessary blow control unit. The request that I made is simply to ask for this matter to be looked at during the further extended period during which RW is based at home. I anticipate that there may well be more to this issue than I have described, but if the matter can be resolved then it can only be for the good that it should be. Litigation capacity

[105]Submissions have been given to the court based on the decision of Munby J. in the case of Sheffield City Council v E, and the potential arose from the evidence for the court to take one view on RW’s subject matter capacity and a different view on her litigation capacity. In my view, on the appraisal of the evidence that I have now provided, the two must run in tandem. At present there is no issue about RW’s subject matter capacity, save in a total emergency. In my view, she palpably has litigation capacity and I share Mrs. Justice Parker’s ready and robust view on this topic voiced at an early stage in the December hearing. She is likely to retain that, save in moments of PTSD crisis, when she lapses into the conditions which I have now on a number of occasions described. So the issue of drawing a distinction between litigation capacity and subject matter capacity does not arise. The two ride together, as it were, at present.

[106]It follows that the procedural structure that will now carry on in relation to this application is that the case will be adjourned. Under the umbrella of the adjournment further steps need to be taken to access alternative units and the court needs to put in place a timetable by which the matter can be kept under review and, in particular, obviously, the report that I have commissioned from the NHS headquarters can be received.

[107]I have flagged up in the course of the judgment areas within the case that may well have been clarified or, for that matter, changed since Dr. Gardner was last involved in the matter. In particular, the plan for a neurological assessment to take place prior to any multidisciplinary team assessment is plainly one that the court would endorse. It is to be hoped that the time limited period of an assessment at the Queen’s Centre, which will not involve, as I understand it, the potential for bed blocking, because, at the very least, RW would return home at the end of the process, if not to another unit, can be given the utmost urgent consideration. If a neurological baseline can be provided, together with such clarity as we have now been able to achieve, which is not, obviously, total clarity as to her mental health, one earnestly hopes this matter will at last move forward and that a unit, difficulty and complex though this case is, will be prepared to take her care on for the purposes of the assessment outside the West Midlands. To contemplate anything else, for the reasons I have given, is really very difficult to do. _________