A fanatical desire to maintain control

Baker J has handed down judgment in a highly unusual case, A Local Authority v M and others.  The facts of the case are startling and underline some of the findings in the House of Lords Select Committee on the Mental Capacity Act about the lack of awareness of the MCA amongst some clinicians.  The judge made important comments about, amongst other matters, the vital importance of proper decision-making when prescribing treatment, including “alternative” treatments, the correct use of welfare deputyships, and the disclosure obligations on litigants in person. M was the son of E and A, and had childhood autism.  Both parents, but particularly his mother E, became convinced that this was as a result of the MMR vaccine, and, as the court found, made numerous false statements about this and other aspects of her son’s health.  A claim had been made on behalf of M in the litigation seeking compensation over the vaccine, but ended when legal aid funding was withdrawn. Baker J summarised the facts succinctly at the end of his judgment:

  1. The critical facts established in this case can be summarised as follows. M has autistic spectrum disorder. There is no evidence that his autism was caused by the MMR vaccination. His parents’ account of an adverse reaction to that vaccination is fabricated. The mother has also given many other false accounts about M’s health. He has never had meningitis, autistic enterocolitis, leaky gut syndrome, sensitivity to gluten or casein, disorder of the blood brain barrier, heavy metal poisoning, autonomic dysautonomia (which, in any event, is not recognised in any classification of medical conditions), rheumatoid arthritis or Lyme disease. As a result of E maintaining that he had these and other conditions, she has subjected M to numerous unnecessary tests and interventions. He did have a dental abscess for which E failed to obtain proper treatment and caused him 14 months of unnecessary pain and suffering. E has also insisted that M be subjected to a wholly unnecessary diet and regime of supplements. Through her abuse of her responsibility entrusted to her as M’s deputy, she has controlled all aspects of his life, restricted access to him by a number of professionals and proved herself incapable of working with the local authority social workers and many members of the care staff at the various residential homes where M has lived. This behaviour amounts to factitious disorder imposed on another. In addition, E has a combination of personality disorders – a narcissistic personality disorder, histrionic personality disorder and elements of an emotional unstable personality disorder.

The judgement repays reading in full.  For the purpose of this post, we focus on three areas: the proper use of welfare deputyship, fact-finding and the disclosure obligations on litigants in person. Deputyship: In 2010 E applied to be M’s welfare deputy, and asked in her application that this:

” … include life-long custodian to him. In addition, for the court to decide that life-long advocacy is also included in this role unless otherwise delegated by me.”

In the box on the application form asking how the order would benefit M, E stated, inter alia:

“My son would benefit from all decisions being made in his very best interests and without the influence of external pressures or distractions.”

On 18th June 2010, District Judge Rogers made an order appointing E as M’s deputy for property and affairs and personal welfare decisions. This order was made without notice to the local authority, Y House or any other agency involved in M’s care. [para 27]. Baker J found that E had grossly abused her power as deputy and that she had used the power to control M’s life and restrict the roles of the professionals, describing her as having a “fanatical desire to maintain control over her son’s life”.  He considered E’s decision-making in imposing a regime of supplements and alternative treatments on M, often on the advice of practitioners who did not meet M and were content to take instructions wholly from M.  The judge noted the views of the expert witness Dr Peter Carpenter: 178 Dr Carpenter observed that most of the dietary and nutritional therapies given to M are ones that he has experienced with other patients over the years. He has not objected to them being used in most cases. He also observes that E appears to have normally sought professional help when using therapies; that she has not devised treatment protocols without advice. He adds, however, that he found little evidence that E carried out what he would expect a best interests decision-maker to do when using non-conventional therapies for an adult who does not have capacity to choose for himself: namely, (a) draw in as wide a range of advisors as possible, and (b) ensure that the therapists are fully aware of the medical history. Dr Carpenter is very concerned that the therapists in this case were not given copies of any diagnostic reports but were, rather, given accounts of how the MMR vaccine had induced a vegetative state and a diagnosis of enterocolitis, which was not supported by any contemporaneous medical records. 179. Dr Carpenter also criticises E for failing to question the reason and purpose of any of the therapies or interventions used or seek unbiased evidence about their effectiveness. He is concerned at the lack of evidence that E looked at the arguments against therapies, as well as the arguments for. He is concerned at the apparent inadequacy of some of the assessments prior to starting therapy. He is also concerned at the apparent lack of monitoring of the effects of therapies. He notes that, despite the lack of evidence that any of the supplements work, the number and manner of taking them has been allowed to grow so that they now seemingly dominate M’s life and care regime. It is the quantity and intensity of the supplements given to M that causes concern for Dr Carpenter rather than any single supplement. 180. For a number of years, until his placement at N House, M was on a gluten and casein free diet. The efficacy of this diet for people with autism is a matter of controversy. Dr Carpenter quoted the guidelines issued by NICE in 2013, which he helped to draft, which recommended against the use of exclusion diets such as gluten or casein free diets for the management of core features of autism in children and young people. He cites research published by “Research Autism”, which he described as a generally respected organisation that attempts to review the evidence of main treatments and interventions in an unbiased manner and which concluded:

“The theory behind the gluten free/casein free diet [“GFCF”] is weak and unproven and there is limited evidence as to whether GFCF diets are actually effective for individuals with autism. Reviewers have found the research evidence to be inconclusive. Despite this lack of evidence, many people embark on a GFCF diet with high expectations that there will be beneficial effects. However, these diets can involve significant inconvenience and costs, as well as a significant limitation on what the individual can eat. Because of this we cannot recommend the use of such diets.

181.A different opinion was expressed by several witnesses called by E and A. Mr Shattock said that excluding gluten and casein from the diet had been reported as leading to measurable improvements in a high proportion of subjects, though in some instances the improvements were minor and not worth the effort, cost or possible disruption to life. Those reports are, however, based on the impression of parents and carers rather than any scientific analysis. Mr Shattock conceded that the benefits of the diet are clinically unproven and frankly acknowledged in his report that, had he been on the NICE committee himself, he would not have been able to disagree with the negative conclusion as to the use of such diets for people with autism. Dr Aitkin said that in general there are several reasons why such a diet might be considered as part of a management approach in an individual with an autism diagnosis and not merely used as a placebo. He cited research that suggested that such a diet is safe if properly adhered to and that there is some limited evidence of benefit. Some individuals with autism showed improvements on such a diet, for reasons other than a casein or gluten free intolerance. Again, however, the evidence of such improvements is the subject observations of parents and carers rather than any clinical or scientific analysis. Ms Haywood, however, was clear that there is now overwhelming evidence about how much autistic people benefit from a gluten free diet

182.In M’s case, there is no clear evidence that being on a GFCF diet is beneficial. The notes of the Royal Free Hospital recorded on 18th March 2001 that E had tried M on such a diet, but by January 2002 the hospital was recording that “he remains on a normal diet as there were no improvements in his behaviour or bowel habits on a gluten and dairy free diet” and there is no evidence that the Royal Free made any subsequent recommendation that he be put back on that diet. The diet was subsequently reintroduced unilaterally by E without positive medical approval. Professor Williamson regards it as a “telling fact” that, since M became resident at N House, he has remained in good physical health despite eating a normal diet, free of any restrictions and devoid of any of the numerous supplements that he had previously been obliged to take. On the contrary, he is eating well and gaining weight. When Professor Williamson saw him, he thought that he looked in excellent physical shape. Professor Williamson advised that, if M can stay well after a restricted diet, vitamins and minerals, it provides “strong evidence to suggest that they are unnecessary.”

183 For Dr Carpenter the key feature was that the reason given for M being on a diet – that he had a diagnosis of enterocolitis – was fallacious. In those circumstances there was no good reason for his diet being restricted in this way. It seems plain that those who advised E about the diet, in particular Ms Haywood, assumed that the diagnosis of enterocolitis given by E was correct. The concern about the insistence of the diet in this case was, therefore, not so much about the use of the diet per se, (which is plainly not uncommon amongst people with autism, notwithstanding the clear view expressed in the NICE guidelines), but, rather, the fabricated diagnosis which led to the diet being imposed.

184If the only alternative treatment therapy provided to M had been the GFCF diet, there would be relatively little concern. But it was not. Rather, it was one of a multitude of treatments given. In her final statement, E described M as an:

” … ever-changing minefield of biochemical hormone surges that require constant awareness of and treatment in terms of biomedical natural supplementation and dietary intake.”

In terms of nutrition, he was supplied with a large number of supplements to be taken daily. Here, it was Ms Haywood’s advice on which E acted. In contrast to the approach recommended by Mr Shattock in the Sunderland Protocol, there was no incremental approach (testing the efficacy of each individual supplement) but rather the prescription of a cocktail of supplements every day.

  1. Dr Carpenter quotes the NICE guidelines again as not recommending the use of such supplements for the treatment of the core symptoms of autism in adults. He notes that: “Research Autism” observed the evidence of nutritional supplements being untested or incapable of being proved and, therefore, it was not a treatment that they could recommend. Dr Carpenter notes, however, that most of the supplements appeared to have no known toxic overdose limit. He acknowledged that he is not an expert, although he expresses concern in general about how over the years the number of supplements delivered to M has increased dramatically and how the rigidity of instructions given for the supply of the supplements produces what he describes as unnecessary behaviour and choice restrictions of M.
  2. I accept Dr Carpenter’s opinion on this point. There is no evidence that the supplements caused physical harm, but I am not persuaded that there is any reliable evidence that they cause any benefit. The important issue is the manner and the quantity in which they were prescribed, without proper objective analysis, to a young man who lacked capacity to make decisions about whether or not to take them.

The judge found that E was the last person who should be entrusted with the role of M’s deputy, but found that it was highly likely that a welfare deputy would be needed because of the fundamental disagreements between the local authority and the family. Fact-finding: The judge set out the following principles to be applied in fact-finding hearings in the Court of Protection. 83. First, the burden of proof lies with the local authority. It is the local authority that brings these proceedings and identifies the findings that they invite the court to make. Therefore, the burden of proving the allegations rests with them. 84. Secondly, the standard of proof is the balance of probabilities: Re B (Children) [2008] UKHR 35. If the local authority proves a fact on the balance of probabilities, this court will treat that fact as established and all future decisions concerning M’s future will be based on that finding. Equally, if the local authority fails to prove any allegation, the court will disregard that allegation completely. In her written submissions on behalf of the local authority, Miss Bretherton contended that the court should apply the principle that

“the more serious the allegation the more cogent is the evidence required to overcome the unlikelihood of what is alleged and thus to prove it.”

This principle, originally stated by Ungoed-Thomas J in Re Dellows Will Trust[1964] 1 WLR 451, was at one time applied by the courts considering allegations of child abuse in family proceedings under the Children Act 1989. In Re B, however, the House of Lords emphatically rejected that approach. Baroness Hale of Richmond, with whose judgment the other four Law Lords agreed, having analyzed the case law, stated at paragraphs 70 to 72:

“70 I would announce loud and clear that the standard of proof in finding the facts necessary to establish the threshold under s.31(2) or the welfare considerations of the 1989 Act is the simple balance of probabilities – neither more nor less. Neither the seriousness of the allegation nor the seriousness of the consequences should make any difference to the standard of proof to be applied in determining the facts. The inherent probabilities are simply something to be taken into account, where relevant in deciding where the truth lies.71. As to the seriousness of the consequences, they are serious either way. A child may find her relationship with her family seriously disrupted or she may find herself still at risk of suffering serious harm. A parent may find his relationship with his child seriously disrupted or he may find himself still at liberty to maltreat this or other children in the future. 72. As to the seriousness of the allegation, there is no logical or necessary connection between seriousness and probability.”

In my judgment, the same approach must surely apply in the Court of Protection where the court is carrying out a similar exercise in determining the facts upon which to base decisions as to the best interests of an incapacitated adult. 85.Thirdly, findings of fact in these cases must be based on evidence. As Munby J (as he then was) observed in Re A (A Child : Fact-finding hearing: speculation) [2011] EWCA Civ 12:

“It is an elementary proposition that findings of fact must be based on evidence, including inferences that can properly be drawn from the evidence, and not on suspicion or speculation.”

86. Fourth, the court must take into account all the evidence and, furthermore, consider each piece of evidence in the context of all the other evidence. As Dame Elizabeth Butler-Sloss, President, observed in Re T [2004] EWCA Civ 458, [2005] 2 FLR 838, at paragraph 33:

“Evidence cannot be evaluated and assessed in separate compartments. A judge in these difficult cases must have regard to the relevance of each piece of evidence to the other evidence and to exercise an overview of the totality of the evidence in order to come to the conclusion whether the case put forward by the local authority has been made out to the appropriate standard of proof.”

  1. Fifth, whilst appropriate attention must be paid to the opinion of medical experts, those opinions need to be considered in the context of all the other evidence. The roles of the court and the experts are distinct. It is the court that is in the position to weigh up expert evidence against the other evidence: A County Council v. K, D and L [2005] EWHC 144 Fam[2005] 1 FLR 851 per Charles J.
  2. Sixth, in assessing the expert evidence, which involves a multi-disciplinary analysis of the medical information conducted by a group of specialists, each bringing their own expertise to bear on the problem, one important consideration – and of particular relevance in this case – is that the court must be careful to ensure that each expert keeps within the bounds of their own expertise and defers where appropriate to the expertise of others – see the observations of Eleanor King J in Re S [2009] EWHC 2115 Fam.
  3. Seventh, the evidence of the parents is of the utmost importance. It is essential that the court forms a clear assessment of their credibility and reliability. They must have the fullest opportunity to take part in the hearing and the court is likely to place considerable weight on the evidence and impressions it forms of them – see Re W and another (Non-accidental injury) [2003] FCR 346.
  4. Eighth, it is not uncommon for witnesses in these cases to tell lies, both before and during the hearing. The court must be careful to bear in mind that a witness may lie for many reasons – such as shame, misplaced loyalty, panic, fear and distress – and the fact that a witness has lied about some matters does not mean that he or she has lied about everything – see R v. Lucas [1981] QB 720. The assessment of the truthfulness is an important part of my function in this case.

The role of litigants in person. E and A were originally represented but conducted the latter part of the case, including a hearing that lasted 20 days.  At para 73, Baker J summed up the procedural steps that the court took in order to assist E and A, and commented ”

  1. Overall, I cannot recall a case in which litigants in person have been assisted by the court and the other lawyers to the extent provided in this case. I am satisfied that as a result E and A, and indeed M, have received a fair hearing, but this was only achieved at the cost of a significant lengthening of the proceedings. One lesson of this case is that, if parties such as E and A are to be unrepresented in hearings of this kind, be it in the Court of Protection or in the Family Court, the hearings will often take very considerably longer than if they were represented. Denying legal aid in such cases is, thus, a false economy.

Baker J drew attention to the need for all parties to provide disclosure, including of those documents which do not support their case: 76.  In total, the court papers filled some 33 lever arch files (court documents and file records) plus two further lever arch files of documents produced by E and A during the hearing. No doubt if the parents had been represented, it might have been possible to reduce this material into a core bundle, as I did myself at the conclusion of the hearing. Even those 35 files may not represent the totality of the disclosable documents that might have been produced. For example, no health visitor records were produced for the period of M’s early years. At a very late stage E alluded to the possibility that she may have copies of these records somewhere in the loft at her home. Furthermore, and despite my explaining the rules about disclosure on more than one occasion, I am not entirely satisfied that E and A have complied with their obligation to disclose all relevant documents, including those that do not support their case. At one point E’s medical records were produced and, when E objected to their disclosure on grounds of confidentiality, I conducted a public interest immunity examination to determine which pages of the records were relevant. In the event, I concluded that only 16 pages fell into that category, but E insisted on challenging the disclosure of some of those pages on the grounds that they would assist the other parties. This illustrates another consequence of parties appearing without representation in these cases, namely that the courts may have to devise new rules as to disclosure.