X, Re (Rev 2) [2015] EWCOP 36

Case No 11774568[2015] EWCOP 36
IN THE COURT OF PROTECTION
IN THE MATTER OF THE MENTAL CAPACITY ACT 2005
Before
District Judge C.H.J. Hilder
Between
A.Y.Applicant- and –
Between
Hertfordshire Partnership NHS Foundation TrustRespondentNorfolk County CouncilRespondentX (by his Litigation Friend, the Official Solicitor)Respondent
The Applicant appeared in person, with the assistance of a McKenzie Friend, MW. for in personThe First Respondent took no part in the hearing.Aswini Weereratne (instructed by nplawl) for Second Respondent Local AuthorityJonathan Auburn (instructed by Irwin Mitchell) for Third Respondent by his Litigation Friend, the Official SolicitorThe proceedings were heard in private.This judgment is being handed down at an attended hearing in private on Tuesday 9 th December 2014. It consists of 27 pages and has been signed and dated by the judge.Hearing HEARING DATES: 25th and 26th September 2014written submissions thereafter
JUDGMENTINTRODUCTIONDate 2014-12-09
[1]These proceedings are concerned with X, a young man of 25 who currently lives in a care home. They began as an application by his mother, AY (who is his appointed welfare deputy and has acted throughout without the benefit of legal representation), in respect of his prescribed medication.[2]X was subsequently detained under the Mental Health Act and the issues before the Court were redefined to address AY’s concerns as to X’s physical health (in particular, the condition of his bowels) and whether the treatment she supported, in the form of dietary exclusion and supplements, fell within the powers of the Mental Health Act or the authority of her deputyship.[3]In the course of proceedings, X has been discharged from detention under the Mental Health Act and the parties have been able to agree a community placement for him, where he is now settled. The issues which remain for the determination of the Court relate to his best interests in relation to diet and whether the welfare deputyship (which is currently suspended) should be restored or discharged. In determining those issues, the Court is asked to reach a series of findings of fact.

MATTERS CONSIDERED

[4]I have read the following documents:a. Filed on behalf of the Applicant, AY: Position statements: the first is undated but was sent by e-mail of 24th January 2013; then two documents dated 22nd May 2013 and 9th January 2014 respectively; then a further undated document which was filed for the hearing on 21st March 2013 with e-mails dated 6th and 17th March; then two further documents dated 23rd May 2013 and 24th September 2014 respectively. Statementsby AY: dated 28th July 2012 x 2, 5th September 2012, 23rd October 2012, 8th November 2012, 8th December 2012, 24th February 2013 (not on form COP24, 10th September 2013 and 12th October 2014. Other statements: by AQ (X’s aunt), dated 9th August 2012 & 7th August 2014 by AZ (X’s father), dated 7th August 2014 by Juliet Hayward (Nutritionist), dated 10th September 2014 A bundle of exhibits “Final submissions” (undated but filed with an e-mail dated 6th October 2014) (There is attached to these written submissions a letter dated 16th September 2014 from Professor David Healy. No permission has been given for the filing of this or any further expert evidence. It has been filed after evidence has closed; there is no record of instructions given to him, no indication of what documentation (if any) he has viewed, and no expert’s declaration. Although I have read this document, it is not formally admitted and I attach no weight to it at all.)b. Filed on behalf of the First Respondent Trust: Position statements: dated 18th March 2013, 22nd May 2013, 7th July 2014, 20th March 2014, and 7th July 2014 Statements: by Stuart Marchant, dated 20th September 2013 by Dr Daniel Dalton, dated 13th May 2014, with additionally a letter dated 24th July 2014 and an e-mail dated 24th September 2014c. Filed on behalf of the Second Respondent, Local Authority: Position statements: dated 23rd January 2013, 15th March 2013, 22nd May 2013, 8th January 2014, 19th March 2014, 27th May 2014, 4th July 2014, 22nd September 2014 and 10th October 14 Statements: by Brenda Cope, dated 8th August 2012 by Philip Pearson dated 14th March 2013, 7th March 2014 and 8th August 2014 by Sarah Norman, dated 15th April 2014d. Filed on behalf of the Third Respondent, through his Litigation Friend: Position statements: dated 21st May 2013, 8th January 2013, 18th March 2014, 29th May 2014, 4th July 2014, 22nd September 2014 and 8th October 2014 Statement: By the Official Solicitor, dated 16th May 2014e. Expert reports, prepared on joint instruction of the parties: Professor RCN Williamson: dated 3rd January 2014 and 27th February 2014 Dr Peter Carpenter: dated 3rd January, 6th January and 1st February 2014[5]These documents were collated into 3 bundles for the hearing. Where there are numbers in brackets in this written judgment, they are references to pages in those bundles. BACKGROUND 6. From birth to involvement of the Court

BACKGROUND

[6]X was born on 24th March 1989. His mother recalls that, apart from recurrent ear infections, his infancy followed normal developmental expectations. On 9th July 1990, at the age of 15 months, he was given the MMR injection. His mother believes that his development regressed thereafter.[7]In March 1992 X was assessed by Dr WL Nackasha, Consultant Paediatrican at St Peter’s Hospital, Chertsey. She subsequently diagnosed “autistic tendencies,” commenting on language and general developmental delay, and identifying special educational needs and a requirement for speech and language therapy.[8]In May 1992 X suffered a bout of gastroenteritis. His mother feels that he suffered from “chronic constipation” ever afterwards, and she took steps to address this through dietary consideration.[9]X was referred by Dr. Nackasha to Professor Graham at Great Ormond Street Hospital. Records indicate that he “trie[d] to discourage [AY] from pursuing a very restricted diet” for X, indicating that his bowel habit was “possibly due to developmental delay rather than any physical cause.”[10]Nonetheless, in October 1993 AY took X to see Dr Hugh Coz, a GP on a list recommended by the Autism Research Institute. For the first time (D48 para 29), there was a suggestion of X having food intolerances, in particular to milk and sugar. AY says that she was advised to remove gluten and yeast from X’s diet and that, within a week of doing so, X showed much improvement. Dr Cox subsequently also suggested the introduction of vitamin C, magnesium and zinc. AY feels that such measures so improved X’s wellbeing that “language difficulties became his primary difficulty.”[11]In September 1994, after a process of “statementing” by the LEA, X started attending F. School (“a local special school”). Just a few weeks later, in mid-November, X received his MMR booster. AY feels that he subsequently deteriorated again, rapidly. From Easter 1995 until September 1996 he was withdrawn from school.[12]In September 1996, at the age of seven and a half, X started in the reception class of a mainstream infant school (with an attached special needs unit) near his home. AY recalls this as a happy and successful time, during which X learned multiplication and long division, and was invited to the homes of friends.[13]By the spring of 1997 X had developed eczema, which caused discomfort and distracted him at school. He was referred to Professor Brostoff, a Consultant Immunologist. Food allergies were suggested. Anti-fungal Nystatin, magnesium, zinc and vitamin B6 were recommended.[14]Between September 1998 and July 1999 X was homeschooled.[15]In March 1999 X was seen for the first time at the Royal Free Hospital’s Autism/IBD clinic.[16]In September 1999, X started at J. School, funded by his parents. AY recalls that the first year at J. School went well but by the following year “puberty and adolescence” brought difficulties for X. There was an incident when another pupil scratched him, and he subsequently became very anxious both at school and at home.[17]In or around January 2001, Dr Andrew Wakefield was involved in the care of X (E25 para 18); and in August 2002 X was first seen by a psychiatrist (D61). Although regular attempts to take X to school were made, he always refused to go in and finally J. School decided that it could no longer meet his needs.[18]In 2003, by then aged 14, X started attending P. School, a residential college for students with “challenging behaviour and complex communication and learning difficulties.” After a settling in period, the placement seemed to work reasonably well, with X even enjoying a 2 day break on a narrowboat with staff and two of his peers in the summer of 2004.[19]By mid-April 2005, AY “felt pressurised” into allowing X to be given orange juice at school. As she recalls it, X rapidly developed urine retention problems which led to an admission to the Accident and Emergency Unit of the local hospital. Then, AY says, on 22nd and 29th June 2006, X was “dragged by the neck of his t-shirt” by different members of staff, and he subsequently regressed into “an almost catatonic state.”[20]In late December 2006, at the instigation of AY, X started taking Happy Days 5HTP (D73) as a dietary supplement.[21]By February 2007 a Community Care Act assessment records that P. School felt unable fully to meet X’s needs but, with unresolved funding issues, X nonetheless remained placed there. Dietary issues remained contentious.[22]In March 2009 X left P. School and moved to E. L. College. Thereafter, there appears to have been rapid deterioration in his presentation. At least from November 26th (bundle III page 54), he was demonstrating “extremely hyped up behaviours...[including] jumping on cars, constant screaming and shouting often lasting all night, hitting and charg[ing] at staff and indeed fellow residents.” After 6 weeks, he was given notice to leave. From involvement of the Court[23]By application dated 14th October 2009, AY applied to the Court for appointment as deputy for both the welfare and the financial affairs of X. The application was supported by an assessment of capacity by Dr. Peter Lock GP, which referred to autistic spectrum disorder. The local authority was not formally notified of the application.[24]AY’s application in respect of property and affairs was granted by order made on 21st January 2010. The application in respect of welfare was granted by order made on 11th February 2010. As welfare deputy, AY was granted authority to decide:• where X should live, and with whom• day-to-day care, including diet and dress• to consent to medical or dental examination and routine treatment• participation in leisure activities• complaints about care or treatment[25]AY subsequently applied for further express authority, including “to receive copies of everything relating to X’s existing health needs (namely diet and bowels)” but that application was dismissed.[26]Meanwhile, on 25th January 2010, X had been “sectioned” under the Mental Health Act 1983. (As a matter of law, therefore, AY’s authority as welfare deputy to decide where X should live was effectively “trumped” and toothless.) X was accommodated initially at Burston House, Diss but from some time in February, at Oak Tree Manor, Tendring, Essex.[27]Within a year consideration was being given to X’s accommodation on discharge from section. In a report prepared for a hearing of the Mental Health Tribunal in January 2011 (quoted at D13), the social worker (Philip Pearson) stated his concern that “there is no agreement between medical professionals and [AY] about the nature and effect of [X’s] bowel condition and that providers may be less willing to offer a service if they believe that there is likely to be limited cooperation about approaches in preventing and responding to challenging behaviour. What is apparent from both [P.School] and [E.L. College] is that concentration only on [X’s] health needs rather than those in regard to his mental state has not achieved stability for [X] in recent years.”[28]In February 2012 X moved to W. Farm, a residential care home. (It seems that he was discharged from detention under the Mental Health Act, but the precise date of discharge is not apparent from the documents available within these proceedings.) X’s aunt, AQ, visited him for a birthday celebration on 25th March and found him “content and relaxed.” However, when she visited him again on 6th July, she found him “passive and inactive.” AY attributes the change to a decision by X’s new GP in March 2012 to stop X’s dietary supplements. She says that his health deteriorated and he was left in pain. Instead of supplements, psychotropic drugs were administered.[29]AY returned to Court. By applications dated 30th June and 3rd July 2012 she sought orders “to support and uphold her decision to refuse consent” for, and to prohibit, the administration of citalopram to X.[30]On 4th July a direction was made requiring AY to serve the application and providing for further consideration on the first available date after 13th August. Meanwhile, AY made 2 further applications to the Court:a. by COP9 dated 11th July 2012 she sought “confirmation that [X] is party to these proceedings of which I am the Applicant on [X’s] behalf as his legal deputy for personal welfare;” andb. by COP9 dated 14th July 2012 she sought essentially clarification/confirmation of her authority as welfare deputy to require those then responsible for X’s care to administer food supplements. The application refers in particular to Happy Days 5-HTP and “any protocol tailor made to suit [X’s] dietary needs put in place by Juliet Hayward…”[31]The day before this second COP9 application, AY had attended a meeting with X’s new GP. The GP refused to reinstate the supplements. X was subsequently removed from that GP’s register (AY describes it as being “struck off.”)[32]Then, on 18th July 2012, X assaulted a member of staff at W. Farm (D15). His responsible clinician, Dr. Krishnan, felt it was appropriate to use citalopram. Two days later, on 20th July X was again sectioned under the Mental Health Act, and moved to Poplar House at Plumstead Hospital.[33]AY made two further COP9 applications to Court, seeking urgent consideration. Regrettably, it seems that there was no Court response. Meanwhile, in respect of the main application, an objection was filed by the local authority and consents were filed by X’s father, grandmother and aunt.[34]X was detained at Plumstead Hospital for a month before returning to W. Farm (not subject to any Mental Health Act powers) on 20th August.[35]In this period of apparent improvement, AY made a further COP9 application to Court, dated 5th September, seeking copies of responses filed to her main application, and consideration of her interim applications. Finally, on 28th September 2012 an order was made but it simply dismissed the application, which was wrongly recited as seeking “to be appointed deputy for the personal welfare (including health) of X in order to refuse medication on behalf of X.”[36]Sadly, X’s informal status did not last long. On 16th October 2012, he was sectioned again, and returned to Plumstead Hospital.[37]On 23rd October AY made a further COP9 application, seeking an extension of time to apply for reconsideration of the latest order, and urgent consideration of the July COP9s. This time, on 2nd November 2012 a more productive order was made, setting aside the dismissal, inviting the Official Solicitor to act for X and giving directions preparatory to a directions/interim hearing on 14th November 2012. (Unfortunately, such productivity proved to be too much. On 8th November AY made a further COP9 application seeking postponement of hearing to allow time for compliance with directions. A further order was made on 12th November which relisted the matter on 24th January 2013.)[38]Unfortunately, by the time of the hearing there was still no one available and willing to act as Litigation Friend for X, so relatively little could be achieved. X continued to be subject to Mental Health Act powers so interim capacity declarations and directions were made only as to decisions in respect of litigation, medication, care and contact. The parties were required to agree identification of “a consultant psychiatrist with expertise in learning disability and autism, and a consultant gastroenterologist”; and to draft letters of instruction. An interim/directions hearing was scheduled for 19th March 2013.[39]Before that hearing could take place, AY made another COP9 application (dated 7th March 2013), seeking to add to the directions in respect of expert witnesses a requirement that the psychiatrist and gastroenterologist should have expertise also in “regressive” autism; and to instruct additionally a consultant neurologist and an immunologist.[40]At the hearing on 21st March 2013, the issues for determination by the Court were identified as follows: 1. whether X has a bowel condition at all; 2. if he does, what is the appropriate treatment in his best interests, either by medication or diet, including nutritional supplements as proposed by AY; 3. whether the appropriate treatment for the bowel condition identified is treatment for the mental disorder (autism) for which X is currently detained under MHA, its symptoms or manifestations. By way of recital it was recorded that: 1. “there may also arise issues as to whether the welfare deputyship order…should be continued, varied or revoked;” 2. X should be party to the proceedings and the complexity of the matter warranted the appointment of the Official Solicitor as soon as possible The parties were directed to agree the identity of experts or otherwise file position statements with proposals, explanations, timescale and cost by 9th April 2013.[41]On 26th March 2013 the Official Solicitor accepted the court’s invitation to act as Litigation Friend for X.[42]The parties were not able to agree the identity of experts to be instructed. After consideration of their submissions, I made an order on 24th May 2013 which• recited the agreement of all parties to the instruction of Dr Peter Carpenter (consultant psychiatrist);• recited the agreement of all the Respondents to the instruction of Professor Robin Williamson (consultant gastrointestinal surgeon) and to the proposition that instructing an expert based outside the UK would be inappropriate on grounds of cost;• recited AY’s proposal to instruct Dr Herbert (USA) and Dr Tettenborn (UK) but also non-opposition to Professor Williamson;• recited the Court’s satisfaction that two experts will be necessary, sufficient and proportionate; that the combined expertise of a psychiatrist and a gastrointestinal surgeon would be appropriate to cover the issues identified; and that instruction of an expert based outside the UK would be disproportionate and unwarranted. Directions were given for the joint instruction of Dr Carpenter and Professor Williamson, and for a hearing on 25th September 2013.[43]Throughout these stages of the litigation, it was decided by those caring for X “to try and manage [him] as far as possible without the use of psychiatric drugs, with emphasis on behavioural management including distraction, safe holds and physical restraint if needed. The diet free of gluten and casein would be continued.” (E32 para 79 and 80) The supplements however were not reintroduced.[44]AY made a further COP9 application, dated 22nd August 2013, seeking orders to “to direct the respondent in that if they wish to continue to deny my son the reintroduction of his natural supplements that benefitted my son but use the excuse of Court proceedings to prevent this then that also has to be applied to prescriptive drugs, the introduction of, the strength of, the frequency of and any combination of.” On 27th August an order was made in response providing for that application to be served on the other parties, and considered at the hearing on 25th September.[45]In fact, that hearing did not take place. By COP9 application dated 20th September 2013 the Trust applied to vacate it. There had been delay in instructing experts, in large part because of the Legal Aid Agency’s position as to funding. With AY not contributing to the cost of instruction, there was a shortfall, which the Trust and LA agreed to fund between them. An order was made by consent on 24th September, providing for the next day’s hearing to be vacated, letters of instructions sent to Dr Carpenter and Professor Williamson by 27th September and their reports filed by 16th December. A hearing was scheduled for 9th January 2014.[46]Meanwhile, in August, September and October 2013 there were fifteen incidents of aggressive behaviour, and 2 of sexually inappropriate behaviour by X recorded (D154).[47]On 9th September 2013 X’s Responsible Clinician changed from Dr Krishnan to Dr Dalton. Dr. Krishnan had initiated the process of a change of medication from chlordiazpoxide to olanzapine, and Dr. Dalton put it into effect, after discussion with X’s parents (D243).[48]It is common ground between the parties that X’s behaviour thereafter showed significant improvement. He became more communicative, more tolerant of frustration, less troubled by unseen stimuli, and more reciprocal in his affective interaction with others. There was a significant decrease in the incidence of hostility and violence (D244). The explanation for this, however, is not agreed. The view of the treating clinicians is that the new medication regime brought about the improvement. The view of AY is that a range of factors contributed, including improvements to X’s diet and bowel movements attributable to fish oils and probiotics.[49]Notwithstanding the availability of the independent expert’s reports, at the hearing on 9th January 2014 there was still abundant dispute. In response to concerns raised by AY, directions were given for disclosure of further documents for consideration by Prof Williamson, and for written questioning of the experts (albeit with a cap on costs on the basis of proportionality). Directions were given as to consideration of community placement for X and identification of statutory responsibility for funding, and a further hearing was listed on 21st March.[50]From the beginning of January, X had been eating foods containing both gluten and milk products, without any adverse effect noted (D254). After discussions with his parents, in late January X’s treating clinicians agreed to reduce the dose of olanzapine being given to him. Unfortunately, a deterioration in his behaviour was rapidly noted and the previous dose was reinstated. By February 17th he was noted to be settled again. (D244)[51]By March 2014, the consideration of potential community placements for X was gathering pace but concerns were again expressed that, if she were able to, AY may seek to place pressure on any placement “to allow the supplements to be given, to have further tests and generally to focus the attention of staff on adhering to a strictly monitored bowel and dietary regime instead of focussing on [X’s] significant complex needs.”(D139)[52]By COP9 application dated 19th March 2014 the local authority applied for revocation of the order appointing AY as welfare deputy.[53]At the hearing on 21st March 2014, notwithstanding replies to her questions from both experts, AY’s concerns were still manifest. The Court considered that further expert evidence, and oral evidence from the experts, was neither necessary nor proportionate but gave directions to address AY’s concerns about apparently undisclosed documentation from W. Farm and to secure written evidence as to X’s diet since January 2014. Directions were given as to the application to revoke the welfare deputyship, which was suspended Although the suspension order says on its face that it was made on 28th March, this is incorrect. .[54]On 15th April 2014 X moved to new placement at R. Hill. This accommodation “looks like any other house in the street” but it provides a home for up to 9 service users. It has its own nutritional professionals. Most promisingly, this placement was agreed between the parties, and X’s move there has been achieved with the support of all concerned with his wellbeing. According to an attendance note by the Official Solicitor’s representative (D240), X has settled in well and his parents have demonstrated flexibility with contact arrangements, to the advantage of all concerned. (This is not to say however that all the historical concerns have simply vanished. It is apparent (D263, 273, 274) that AY has been requesting highly detailed monitoring of ’s diet since his arrival there.)[55]On 22nd May 2014 AY made a further COP9 application seeking• an extension of time in which to reply to the local authority’s schedule of facts relied upon on in respect of the application to revoke the welfare deputyship;• to adjust the hearing dates so that 3rd June could be used for directions only, with an additional 5 day hearing to be listed; and• permission to instruct Paul Shattock of the Autism Research Unit Sunderland.[56]On 27th May a direction was given that the matter would remain listed as already provided and the COP9 application would be considered at the hearing on 3rd June. Subsequently the local authority applied (by COP9 dated 30th May 2014) to adjourn the final hearing because of issues of availability of counsel and witnesses, and to allow for a review of the new community placement and finalisation of the care plan. In the event the parties agreed to vacate the listed hearings and an order was made to that effect on 3rd June 2014. The order also granted AY an extension of time to respond to the schedule, and refused her permission to instruct further expert evidence.[57]AY applied (by COP9 dated 23rd June 2014) for a reconsideration of the order of 3rd June. Effectively, she sought renewed consideration of the directions she had requested at the hearing on 21st March; clarification of the refusal to instruct further expert evidence; and additional extension of time in which to file her response to the schedule of facts. By order made on 25th June 2014, her application was listed for an attended hearing on 8th July.[58]At the hearing on 8th July 2014, AY explained to the court why she felt that further expert evidence was required. I reviewed all the stages whereby directions in respect of expert witnesses had been considered to date, considering the opportunities AY had had to contribute so far, and concluded that no additional evidence was required or appropriate. Timetabling directions were given in respect of this final hearing. The issues for determination by the Court were defined as continuation/revocation of welfare deputyship, and the treatment to be given to X in his best interests (C283).[59]On 28th July 2014, X was discharged from section under the Mental Health Act.[60]On 19th August 2014 X was admitted to hospital with an enlarged testicle. He was discharged back to R. Hill on 22nd August, and the final hearing went ahead on 25th and 26th September. At the end of the two days, AY asked to make her closing submissions in writing. The Official Solicitor had raised with the Court his awareness of a case raising similar issues being considered by the Honourable Mr. Justice Baker. Accordingly directions were given for:• AY to file closing submissions in writing by 10.30am on Friday 3rd October;• any response from other parties by 10.30am on Friday 10th October;• the Official Solicitor to provide the Court and the parties with the anticipated judgment of Baker J if made be made public;• any comments on the judgment of Baker J within 7 days of a copy being provided. Then a written judgment would be given.[61]The Court subsequently received from AY a COP9 application seeking an extension of time until 6th October to file her closing submissions. On 7th October 2014 Baker J’s judgment was handed down and a copy provided to me by the Official Solicitor. I made an order dismissing AY’s COP9 application on the basis that the requested time had already expired, and confirming that the remainder of the timetable stood.[62]The Court has subsequently received from AY two further COP9 applications. The first, dated 11th October 2014, seeks further time in which to consider the judgment of Baker J. The second, dated 12th October 2014, states that final submissions were filed by 6th October, and requests that they be considered. As will be apparent from this judgment, AY has indeed had further time to consider Baker J’s judgment, and she has filed no comments; and her written final submissions (which reached the Court file with the 12th October COP9 application) have been fully considered. Therefore, no order is required in respect of the last two COP9 applications.[63]Meanwhile, so far as I am aware, X continues to live at R. Hill. He has been given an unrestricted diet since 15th July 2014 and, as at the date of latest submissions, no adverse consequences have been noted by those responsible for his day to day care.[64]Since the hearings, in her COP9 applications AY has informed the Court that X has been diagnosed as having a testicular tumour, and an operation was scheduled for 14th October. I have not been informed if it went ahead, or of its outcome.

POSITIONS OF THE PARTIES

[65]It is broadly accepted by all parties that X suffers from an autistic spectrum disorder and that he has moderate to severe learning disabilities. Dr. Dalton is “confident that [he also has] an illness with affective and occasional psychotic components….probably best characterised as bipolar affective disorder” (D244) and this conclusion has not been challenged.[66]The parties’ descriptions of X depict him similarly as largely non-verbal but fully mobile and able to read, write and use an i-pad to assist his communication. All parties agree that he is fully dependent on carers to meet all his personal care needs, food and fluid intake; and that he lacks capacity to litigate these proceedings, and to make decisions about where he lives, how he is cared for and the treatment he receives.[67]It is agreed that X should remain living at R. Hill.[68]There is no issue as to contact between X and his parents. The current consensual arrangements are felt to be working well, and no orders are sought.[69]The Applicant considers that X’s autism is not of the classic type, but was “acquired” after birth. Her approach throughout these proceedings appears to have been broadly supportive of the controversial views of Dr Wakefield with reference to the MMR vaccination but she has never said so expressly within these proceedings and, when the Court has explicitly reminded the parties that these proceedings are not, and could not, be the appropriate forum for consideration of that controversy, she has not demurred.[70]It has not always been easy to identify from her many applications and statements quite what AY has been seeking from the Court. Nonetheless, the broad thrust of her case is clear. She believes that X’s behavioural challenges are reflective of a bowel condition which leaves him often “impacted” and in pain which he cannot otherwise express. She further believes that this bowel condition can and should be treated by means of excluding certain food types (notably gluten, casein and lactose) from his diet, and giving him nutritional supplements in accordance with a protocol devised by Juliet Hayward. (The protocol devised for X in July 2012 is included in the third hearing bundle at page 22. It specifies 11 supplements for breakfast, 3 mid-morning, 2 at lunchtime, 3 mid-afternoon, 9 with evening meal and 2 more before bed.)[71]AY considers that she is best placed to make decisions about the welfare of X. As his mother, she understands him best and has always acted in his best interest. In the words of Juliet Hayward (D292), AY “has left no stone unturned” in pursuit of her dietary goals for X whereas, AY considers, no other carers have the time or the will to research his condition as she has done to ensure that his individual needs are most appropriately met. Accordingly, she contends that her authority as welfare deputy should be reinstated.[72]The Second Respondent Local Authority accepts the conclusions of the independent experts that X’s only significant bowel condition is functional constipation, probably arising from difficulties in the toilet training process attributable to his learning disability. The Local Authority seeks a series of findings of fact, as set out in a schedule, to confirm its view that AY takes an unconventional approach to X’s care and treatment, and seeks to impose her views to the detriment of X’s wellbeing. It maintains that X should be allowed an unrestricted diet and medical treatment as advised by the responsible clinicians. It seeks revocation of the welfare deputyship order on the basis that AY’s use of such authority jeopardises X’s stability and placement because of the strains it places on those responsible for day to day care.[73]X’s Litigation Friend, the Official Solicitor has confirmed that it is not possible to ascertain from X any wishes and feelings as to the issues before the Court. He agrees to declarations as to lack of relevant capacity. He accepts the independent medical evidence and concludes that there is no need for any further testing of X’s bowel or dietary tolerance, and no need for restricting his diet. He contends that it is in X’s best interests for his diet and treatment to be determined by the responsible clinicians.[74]In respect of welfare deputyship, the Official Solicitor notes that AY has not shifted her position at all throughout these proceedings, despite the weight of evidence gathered. He submits that a person who does not listen to medical experts and work in collaboration with professionals in the best interests of the incapacitated adult is particularly ill-equipped to act as a personal welfare deputy (D232) and accordingly the welfare deputyship order should be discharged. He contends that no replacement deputy is needed.

THE LAW

[75]I remind myself in particular of the following provisions of the Mental Capacity Act 2005: s1(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. s1(6): Before the act is done, or the decision made, regard must be had to whether the purpose 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. Of these two principles, per Baker J in G v. E [2010] EWHC 2512 (COP), “it is the best interests principle that takes priority, as the wording of the two subsections makes clear.”[76]In respect of ‘best interests’ I remind myself of section 4 of the Mental Capacity Act 2005 and in particular s4(2) The person making the determination must consider all the relevant circumstances…. s4(7) He must take into account, if it is practicable and appropriate to consult them, the views of-(a) …(b) anyone engaged in caring for the person or intested in his welfare(c) ….(d) Any deputy appointed for the person by the court as to what would be in the person’s best interests…[77]In assessing X’s best interests, I have regard to his right, under Article 8 of the European Convention on the Protection of Human Rights and Fundamental Freedoms, to respect for private and family life; and to the need to avoid being over-influenced by the ‘protection imperative’. Specifically in the context of treatment, I have regard to the observations of Baroness Hale in Aintree University Hospital NHS Foundation Trust v. James [2013] UKSC 67, that “decision-makers must look at…welfare in the widest sense: not just medical, but social and psychological.”[78]In respect of deputyship I remind myself of section 16 of the Mental Capacity Act 2005 and in particular: s16(4) When deciding whether it is in P’s best interests to appoint a deputy, the court must have regard (in addition to the matters mentioned in section 4) to the principles that –(a) a decision by the Court is to be preferred to the appointment of a deputy to make a decision, and(b) the powers conferred on a deputy should be as limited in scope and duration as is reasonably practicable in the circumstances. s16(7) An order of the court may be varied or discharged by a subsequent order. S16(8) The court may, in particular, revoke the appointment of a deputy or vary the powers conferred on him if it is satisfied that the deputy – (a) has behaved, or is behaving, in a way that contravenes the authority conferred on him by the court or is not in P’s best interests, or (b) proposes to behave in a way that would contravene that authority or would not be in P’s best interests.[79]Further guidance as to the approach to be taken in respect of deputyship may be found in the Code of Practice to the Mental Capacity Act: 5.8 Under the Act, many different people may be required to make decisions or act on behalf of someone who lacks capacity to make decisions for themselves…..• For most day to day actions or decisions, the decision-maker will be the carer most directly involved with the person at the time.• Where the decision involves the provision of medical treatment, the doctor or other member of health care staff responsible for carrying out the particular treatment or procedure is the decision-maker.• Where nursing or paid care is provided, the nurse or paid carer will be the decision-maker• If… a deputy has been appointed under a court order, ….the deputy will be the decision-maker, for decisions within the scope of their authority. What are the rules for appointing deputies? 8.31 Sometimes it is not practicable or appropriate for the court to make a single declaration or decision. In such cases, if the court thinks that somebody needs to make future or ongoing decisions for someone whose condition makes it likely they will lack capacity to make some further decisions in the future, it can appoint a deputy to act for and make decisions for that person. A deputy’s authority should be as limited in scope and duration as possible….” Personal welfare (including healthcare) 8.38 Deputies for personal welfare decisions will only be required in the most difficult cases where:• important and necessary actions cannot be carried out without the court’s authority, or• there is no other way of settling the matter in the best interests of the person who lacks capacity to make particular welfare decisions.[80]When considering the import of these provisions I bear in mind the analysis of Baker J in G v. E [2010] EWHC 2512 at paragraph 57:
“The Act and Code are therefore constructed on the basis that the vast majority of decisions concerning incapacitated adults are taken informally and collaboratively by individuals or groups of people consulting and working together. It is emphatically not part of the scheme underpinning the Act that there should be one individual who as a matter of course is given a special legal status to make decisions about incapacitated adults. Experience has shown that working together is the best policy to ensure that incapacitated adults…receive the highest quality of care…Where there is disagreement about the appropriate care and treatment, (which cannot be resolved by the methods suggested in chapter 15) or the issue is a matter of particular gravity or difficulty, the Act and Code provide that the issue should usually be determined by the court.”
And at paragraph 61:
“It would be a misreading of the structure and policy of the statute, and a misunderstanding of the concept and role of deputies, to think it necessary to appoint family members to that position in order to enable them better to fulfil their role as carers for P.”
[81]In respect of fact-finding, I adopt the summary of the law set out by Baker J at paragraphs 82 – 90 of his judgment in the matter of MA Local Authority v. M, E and A [2014] EWCOP 33. In particular, I note that• The burden of proof lies with the Second Respondent Local Authority;• The standard of proof is the balance of probabilities;• Findings of fact must be based on evidence;• The court must take into account all the evidence and, furthermore, consider each piece of evidence in the context of all the other evidence;• 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 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;• The evidence of the parents is of the utmost importance.

THE HEARING

[82]I heard oral evidence from Philip Pearson (social worker) and both of X’s parents, AY and AZ. It had been anticipated that AQ (X’s aunt) and Juliet Hayward (nutritionist) would also give oral evidence but in the event the Applicant informed the Court on the first day of the hearing that they would not be attending. After consideration, the other parties were content for the hearing to proceed with their evidence admitted on paper, not accepted or agreed, but not subject to cross-examination.[83]It should be noted that, throughout the hearing, AY conducted herself with politeness and quiet self-restraint. I am satisfied that she did her best to answer questions put to her fully and honestly. She is without doubt devoted to X and dedicated to promoting his wellbeing as she sees it. However, I was struck by the rigidity of her position. In particular, when matters were put to her which were suggestive at least of a need to question the credentials of the nutritionist in whom she places so much faith, her response was to be offended by the questioning. It was apparent that she had not asked any such questions herself before adopting wholesale that person’s advice. Conversely, when professional advice contradicted her own position, she was eager to criticise the authority of the advisor (for example in Professor Williamson’s reference to Wikipedia.)[84]X’s father, AZ, made a different impression. Throughout proceedings he has quietly supported his wife’s position and he did so again at the final hearing. He said very little. I am in no doubt that he is devoted both to X and his wife, but his approach is one of supporting AY and the approach she takes to their son’s wellbeing, rather than actively framing the family’s agenda.

THE MEDICAL EVIDENCE

[85]Professor Williamson has 45 years of experience as a gastrointestinal surgeon, and was for 8 years Dean of the Royal Society of Medicine. His CV documents “a good deal of experience of inflammatory bowel disease (both ulcerative proctocolitis and Crohn’s disease) and of gastro-oesophageal reflux disease, … some experience of functional disorders of the large intestine…a longstanding interest in small bowel surgery and … knowledge of malabsorptive conditions.”[86]Professor Williamson’s first report records (E22) that X’s health records as supplied to him were “patchy” but did include a 71 page report by Dr Krishnan dated 20th April 2013, which was clearly based on wider access to records. Consequently, Professor Williamson felt able to reach clear conclusions but on a preliminary basis only, subject to sight of the further documentation which he identified.[87]Having been supplied with the ‘missing’ records and questions from the parties (E106), Professor Williamson filed a second report in which he states that he had “found no reason to alter [his] preliminary opinion.”[88]Professor Williamson includes in his reports a number of references to X’s records which particularly strike me as pertinent to the wider issues now before the Court. In particular: ]a. (E27 para 45) In July 2007 Dr Patel recommended reintroduction of gluten and milk into X’s diet; b. (E29 para 60) In June and September 2010 X was seen by Professor Bjarnasson, who concluded that he “did not have any signs of inflammatory bowel disorder and that the faecal calprotectin values were not high enough to indicate an on-going inflammation in the colon” and that “the problems around erratic bowel habits were not due to colitis but due to…learning disabilities and autistic disorder.” Nevertheless he prescribed Mezavant XL, which Dr Krishnan’s report called “paradoxical.” Professor Williamson subsequently found an explanation for this (E107) in a letter from Dr Bjarnason dated 13th January 2012, in which he stated that he considered [certain treatments] to be “useless but harmless, and he did not have the will to continue arguing with [the Applicant.]….I do not think [X] would benefit from seeing me, indeed neither would his mother as I have been so adamant with her that I do not believe the Royal Free story which she is adhering to so ferociously.” Professor Williamson concludes that “I do not seek to blame Prof Bjarnason: like other doctors who have tried to alter her strongly-held opinions, he gave up the struggle.” c. (E33 para 83) In December 2012 a comprehensive report from Dr Fellows found “no evidence of inflammatory bowel disease…[and that the] overall clinical picture indicated functional constipation.”[89]Professor Williamson concluded (E44) that X’s dominant bowel condition is “functional constipation,” with the likely explanation (E37) being a failure of potty training as a result of his learning disability.[90]Professor Williamson found no clear evidence to support a specific food intolerance (E38), and no evidence to support the presence of ulcerative colitis or Crohn’s disease. In respect of AY’s contention of “autistic enterocolitis” he says (E41):
“I note the following: 1. the absence of the diarrhoea or other symptoms that one might reasonably anticipate in a patient with a serious inflammatory condition of the oesophagus, stomach or colon; 2. the completely normal recent measurement of CRP; 3. the relative normality of gastrointestinal endoscopy, both upper and lower; 4. the apparent lack of much to find on the biopsies taken from somewhere in the gastrointestinal tract in 2000. My own impression is that if X does have any colonic or oesophago gastric inflammation it must be very minor. I would need much more solid evidence to accept a genuine diagnosis of autistic enterocolitis in his particular case.”
[91]In respect of treatment, Professor Williamson concludes that:a. there is nothing to be gained from further investigations of X’s gut;b. there is no need for X to take any anti-inflammatory agent;c. there is nothing to justify continued use of exclusion diets or supplements for X (but a gentle laxative could be kept in reserve for use if necessary);d. X’s faecal incontinence could just be accepted (since one daily evacuation into underwear is manageable) but there would be no harm in trying toilet training again provided it does not lead to distress.[92]I note that, in preparing his reports, Professor Williamson did not speak to the Applicant directly. This is regrettable but, given the subject matter on which he was asked to give an opinion, I do not consider that it undermines Professor Williamson’s conclusions to any significant degree.[93]I note also AY’s consternation that an expert witness should quote Wikipedia within his report. It is clear to me however that Professor Williamson used the extract from Wikipedia only to illustrate the fact of controversy, not as the basis of his professional opinion:
“This entry clearly demonstrates that the concept of autistic enterocolitis is controversial, to say the least.”
He went on to cite academic studies and the individual particularities of X’s case to justify his own conclusions. I do not accept that there was anything improper in his reference to Wikipedia.[94]Professor Williamson acknowledges at the outset of his report that he “know[s] very little about autistic spectrum disorders or indeed about psychiatry in general.” I am satisfied that this in no way undermines the validity of his conclusions on those matters of bowel condition which are within his expertise, particularly given that he has had opportunity to discuss this matter with the other expert instructed, whose expertise does cover such matters.[95]Dr Peter Carpenter is a consultant psychiatrist with a special interest in autism. His CV documents that he has, amongst other things, taught widely on autism and worked with the National Autistic Society.[96]Dr Carpenter concludes that X has autism and moderate to severe learning disability. He considers that X lacks capacity in all matters relevant to these proceedings.[97]He defers to Professor Williamson’s opinion about the existence of any bowel condition but he is “struck how much more likely it is that any physical bowel condition [X] now has is secondary to [him] in infancy not using the potty and voluntarily holding onto his faeces, with the secondary development of bowel loading, reduced gut motility and mild gut inflammation, rather than a primary physical bowel disorder” (E61).[98]Dr. Carpenter rejects the use of dietary exclusion and supplements as treatment for autism, referring to the conclusions of Research Autism (E62) and the guidelines of NICE (E63). He considers, but rejects, the suggestion that X may be an exception to the generality on the basis that, having experienced dietary restriction and supplements, X nonetheless “remains very autistic” ((E63 8.8.1)

FINDINGS

[99]The Second Respondent Local Authority prepared a schedule of findings sought. AY failed to provide her response to the schedule, despite offers of technological assistance, until very shortly before the final hearing. The findings which I make below after full consideration of the documentary and the oral evidence broadly reflect, but do not completely follow, the headings set out in the schedule.[100](a) AY believes that X suffers from a bowel condition. After consideration of their first reports, which she did not accept, AY was given an opportunity to put written questions to both Professor Williamson and Dr. Carpenter. Those questions demonstrate an unwillingness to accept their conclusions and a drive to identify a different explanation for X’s presentation. In her response to the schedule of facts sought, AY states that X was “previously diagnosed with oseophagistis and slow motility and cryptitis. Whether the experts, parties or court want to accept this or not these are disorders of the gastro-intestinal tract.” AY is clearly unable or unwilling to accept the up-to-date assessments which find no evidence of a bowel condition other than functional constipation. It is the very basis of her case within these proceedings that X suffers from a bowel condition.(b) The only bowel condition from which X suffers at present is “functional constipation,” with the likely explanation being a failure of potty training as a result of his learning disability. I accept the evidence of the jointly instructed independent medical experts. I am satisfied that their conclusions are based on appropriate expertise and experience and a proper consideration of all the circumstances of X’s individual circumstances. Their conclusions are consistent with numerous other assessments of X made over time and documented in his records. I can find no evidence of comparable weight which disputes their conclusions.(c) AY is unwilling to accept that X’s autism is the cause of much of his behaviour. AY has denied that X has a psychiatric disorder in various documents (including her COP9 application dated 3rd July 2012 at C16, and her statement at D43). Her response to the schedule of facts sought suggests that these denials may in part have been because of a semantic misunderstanding of the term “psychiatric disorder” in the context of historical changes to ICD classifications. However, more broadly it is clear from the approaches that she took to X’s diet and bowel activities for many years, both when she was the principle carer for X and since he has been in residential care, that AY believes that his behaviour is “intrinsically linked with his intestinal dysfunction and inflammation” (her words, F3). There is no similar indication of any acceptance by AY that autism itself accounts for X’s presentation. Her unwillingness to accept such a conclusion is manifest in her repeated requests for permission to adduce further expert evidence. I am amply satisfied from AY’s presentation of her case within these proceedings that she is unable to accept that autism, rather than any bowel condition, is fundamentally the cause for much of X’s behaviour.(d) AY believes that X’s autism is “regressive” and linked to a bowel condition brought about by his having had the MMR vaccination. She supports disputed and controversial medical views in respect of the MMR vaccination causing “autistic enterocolitis.” AY expressly stated such beliefs in a statement submitted (jointly with her husband) to a meeting on 14th August 2013 (F3). She repeated such views in a statement filed within these proceedings (D50). In her written question to Dr Carpenter, AY relied on studies of Dr Balzola, which (Dr Carpenter pointed out at E134) were not peer reviewed or regarded by peers as of sufficient weight to form the basis of general thinking or practice, and a study by a group including a person whose “other work and personal credentials,” Dr Carpenter noted, have been “questioned in various boards of enquiry….” In her response to the schedule of facts sought, AY makes no comment on Dr Carpenter’s assessment of the medical views to which she referred. I consider that his qualifications and experience mean he is much better placed to reach an informed view as to the reliability of differing medical opinions. I accept Dr Carpenter’s observations.(e) AY believes that X should be treated with “natural remedies,” such as 5HTP, instead of conventional psychiatric medication. AY accepts this summary of her views. In her statement she explains her wish for the reintroduction of 5HTP “in preference to…sedatives or psychiatric drugs” (D43). In her written responses to the schedule of finding sought by the Local Authority she states that “The use of natural supplements, together with an appropriate healthy dietary intake is a well-documented alternative and effective approach to the management of autistic symptoms…” I am satisfied that the evidence amply demonstrates the accuracy of this description of AY’s general approach to X’s care and treatment.(f) There is no evidence of 5THP and/or dietary supplements having any beneficial effect on X’s condition or behaviour. AY clearly believes that 5HTP and an extensive range of dietary supplements are beneficial for X but she has made no response at all to the assertion in the Local Authority’s schedule of facts sought that there is no evidence to support her belief. I have found no evidence (beyond AY’s own assertion) that X derives positive benefit from 5HTP. I accept the evidence of Philip Pearson (D102) in answer to AY’s general assertion of benefit: he points out that, even whilst taking 5HTP, X developed further obsessive behaviours, and he continued to suffer when the dosage was increased. In oral evidence, Philip Pearson said when questioned by AY that he “didn’t know why Dr Dalton believed that olanzapine was the best medication” but he “can say that the effect of olanzapine was dramatic, such that I would not challenge it….Before olanzapine, some behavioural issues as before detention were present in hospital…within a few weeks [of starting olanzapine] a lot of those behaviours had diminished and we were discussing discharge planning.” When Dr. Dalton considered the relative merits of olanzapine and 5HTP (D246), any concession he makes as to a positive effect from taking 5HTP is outweighed by his assessment of the risk involved:
“the decision to favour olanzapine I made on the basis that the risk of serious side effects, or contamination of the preparation, of 5HTP appears to be either unquantified or greater than olanzapine.”
AY was permitted to file a statement by Juliet Hayward, a “nutritionist.” The statement was not admitted as expert evidence, although its contents suggest that this is how Ms. Hayward considered it. I note the concerns of Baker J in respect of Ms. Hayward’s contribution to the (totally separate) case of MA Local Authority v. M, E and A [2014]EWCOP 33 at paragraphs 128 and 131. In respect of X, Ms. Hayward’s statement falls a long way short of standards which would be expected of an expert witness. I have no confidence that the “recommendations” she makes are properly based on an informed consideration of his circumstances and medical history. I do not regard Ms. Hayward’s statement as reliable evidence in support of the assertion that X derives any beneficial effect from 5HTP or dietary supplements. I conclude that there is no evidence on which I could be satisfied that 5HTP or dietary supplements have a beneficial effect on X. (g) There is evidence that X has benefitted from treatment with the anti-psychotic drug Olanzapine. Dr. Carpenter (E34 and 35) discussed X’s experience of treatment with Olanzapine with Dr Dalton and with staff at his placement, and he considered the medical records. He noted that, within 2-3 months of Olanzapine treatment starting X was “much calmer and more sociable” and “co-operated reasonably well,” that a female care worker was then sufficiently confident of his behaviour to be willing to take him out in a car without an escort, and that there were no recent records of violent or sexualised behaviour. Professor Williamson (E111 and 112) expressed the view, in response to questions raised by AY, that “what has controlled his violent and inappropriate sexual behaviour over recent weeks has been Olanzapine.” In contrast AY states (in her response to the schedule of facts sought) that X had started to improve before the Olanzapine was commenced. She recalls a Sunday visit before the medication commenced when X was “very happy”, and she points out that there are no records of violent or sexualised behaviour after September 2013. I am struck by the narrow time-frame of AY’s own direct observations of X’s improved presentation. Necessarily, because she was not providing the daily care for X, her observations were limited to contact visits. In contrast, the combined view of care staff and clinicians represents a more comprehensive overview. AY does not offer any alternative explanation for the noted improvements in X’s presentation, and indeed she does not dispute that there was improvement after olanzapine was administered. In oral evidence, she expressed the view that olanzapine had “the same benefit” as 5HTP (but with different side-effects.) I accept the conclusions of the independent experts in preference to the views expressed by AY. I note that they are consistent with the attempt made in January 2014 to reduce the dose of olanzapine, which failed because challenging behaviour returned. I am satisfied that those conclusions amount to good evidence that X has benefited from treatment with Olanzapine. (h) AY’s approach to X’s diet has placed unrealistic and unworkable demands on staff caring for X. The various e-mail chains included in the hearing bundles amply demonstrate that at times AY’s requests to care staff for information as to what and when X is eating, and how his bowels are functioning, have been excessive and unmanageable. These requests have continued even since X has been living at R. Hill (see paragraph 54 above.) I accept the concerns expressed by Philip Pearson that AY’s “insistence on staff concentrating on meeting what she believes are X’s health needs has the effect of focussing staff attention on her demands rather than on meeting X’s needs... her constant interferences with X’s care have made it challenging for all professionals, her insistence at wanting to control his medication, to have a detailed record of all his foods and other routines and her demands around his day to day care have hindered our attempts to support X” (D16).A similar effect was, I find, seen in the letter from Dr Bjarnason and in the cancellation of X’s GP registration. I do not doubt for a moment that X believes she is acting in X’s interests. Unfortunately, I am equally satisfied that she has pursued her approach in a manner which has placed unrealistic and unworkable demands on his day to day carers.[108]The other matters listed in the Local Authority’s schedule of findings sought are in reality less “findings of fact” than conclusions for the future. Nonetheless, for convenience and ease of future reference, I consider it appropriate to address those matters now and record my conclusions.[109](i) AY will continue to try to arrange for “testing” of X with a view to establishing that he has a bowel condition. AY accepts (in her response to the schedule of facts sought) that, when others were not acting on her concerns in the way she would have wished, she “discretely collected a sample from X on a visit home (from his soiled pants whilst he was in the bath) and [had] it tested …” Moreover, she has “no regrets” about that. Similarly, she describes “resort[ing] to carrying weighing scales in the boot of my car to weigh [X] when I visited him, so worried was I about his rapid weight loss, and the fact that no one else seemed concerned enough to check on his weight loss” (D88). These admissions demonstrate AY’s determination to pursue testing in the face of expert advice. During the course of these proceedings she has referred to her requests for testing (in her questions to Professor Williamson E113, E119), expressing irritation that her requests have been “continually denied.” Although it is very much to be hoped that the conclusion of these proceedings will bring some resolution, unfortunately I can find nothing in AY’s written or oral evidence to suggest that AY’s approach to testing is likely to change in the future. (j) AY will continue to seek detailed recording and monitoring of X’s diet and bowel activities. In her response to the schedule of findings of fact sought, AY expressly agrees that she will insist on having detailed records kept and a level of monitoring of his diet and bowels: - “Yes, as it is necessary as X can get impacted and also suffer urine retention both of which may end up in it being necessary for [X} to have aggressive bowel clearance or insertion of naso-gastric tube, both of which are unpleasant treatments and avoidable if due care is taken in monitoring…” In her oral evidence, AY agreed that she would want to insist on continued monitoring. (j) AY will continue to support the use of a “nutritional protocol,” a restricted diet and dietary supplements for X. AY’s continued support for Juliet Hayward’s nutritional protocol (of dietary supplements) is apparent in the filing of a statement by her in the later stages of these proceedings, and in her continued support for such a protocol in oral evidence. AY’s continued support for dietary restriction is demonstrated throughout her conduct of these proceedings. It is seen, for example, in her dismissal of Dr. Krishnan’s approach on the basis that he is “very much restricted by the NICE Guidelines…this is not taking into account X’s individual and complex set of needs that are unique to him, and also not taking into account the fact that he had previously had better health and less ailments and a far better quality of life whilst taking these supplements” D40). It was seen also when, in oral evidence, AY confirmed that she “would like to discuss the possibility of [X] having 5HTP reintroduced, which would mean olanzapine would have to be stopped.” I can find no indication that AY is likely to change her views as to the need for dietary restriction and supplements in the future.

CONCLUSIONS

[112]Diet and treatment: When X’s diet was restricted and he was taking supplements, he remained autistic. At least since the beginning of this year, he has had access to previously restricted foodstuffs (D212), and since July he has had an unrestricted diet, without any noted deterioration in his behaviour or the condition of his bowels. Restriction of diet is an infringement of X’s freedoms; and a requirement to take nutritional supplements is an imposition. In the absence of evidence of positive benefit from either the infringement or the imposition, I consider that neither is in his best interests.[113]Given the finding that AY will continue to seek testing and administration of 5HTP and nutritional supplements, I am satisfied that it would not be in the best interests of X for AY alone to have authority to make such decisions for X. I am satisfied that instead, it is in his best interests for decisions in respect of X’s diet and treatment to be taken in a collaborative process, after due consultation in accordance with the general approach of the Mental Capacity Act 2005.[114]Deputyship: AY’s views run counter to the generally accepted approach in respect of treatment for autism, yet she has pursued, and as I have found will continue to pursue, those views to the point of placing unworkable strain on those responsible for X’s day to day care. It follows that I am satisfied that she has behaved, and proposes to behave, in a way which is not in X’s best interests (however much she believes to the contrary.) It is clear that AY’s appointment as welfare deputy has worked against X’s interests, not to further them. I am satisfied that the appointment should be revoked.[115]I understand that AY will feel the revocation of her welfare deputyship as a blow. It is therefore appropriate to make clear that it should not – and I am confident that it will not – operate to exclude her from contributing to the process of welfare decision–making for her son. Rather, it restores her to the usual position for the parent of an incapacitated adult, as envisaged by those who framed the Mental Capacity Act. AY is clearly a person interested in X’s welfare (as well as being his deputy for property and affairs). Accordingly, wherever it is practicable and appropriate to consult her, any person or body making a ‘best interests’ decision for X must take into account her views, pursuant to section 4(7) of the Act.[116]There are good indications that “the usual approach” of collaborative decision-making can operate successfully for X. In particular, I note that the parties have been able to agree where X should live; and now that he is there, they have been able to maintain contact arrangements sufficiently well that no restrictions and no orders of the court are sought. With the issues of dietary restriction and supplement resolved by decision of the court, I agree with the Official Solicitor that there is, at present, no need to appoint anyone else as replacement welfare deputy.

Cited in 1 later judgment