X, Re (Rev 2)

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.

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.

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.

I have read the following documents:

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.

X was born on 24^th March 1989. His mother recalls that, apart from recurrent ear infections, his infancy followed normal developmental expectations. On 9^th July 1990, at the age of 15 months, he was given the MMR injection. His mother believes that his development regressed thereafter.

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.

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.

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.”

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.”

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.

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.

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.

Between September 1998 and July 1999 X was homeschooled.

In March 1999 X was seen for the first time at the Royal Free Hospital’s Autism/IBD clinic.

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.

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.

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.

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 22^nd and 29^th 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.”

In late December 2006, at the instigation of AY, X started taking Happy Days 5HTP (D73) as a dietary supplement.

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.

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 26^th (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.

By application dated 14^th 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.

AY’s application in respect of property and affairs was granted by order made on 21^st January 2010. The application in respect of welfare was granted by order made on 11^th February 2010. As welfare deputy, AY was granted authority to decide:

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.

Meanwhile, on 25^th 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.

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.”

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 25^th March and found him “content and relaxed.” However, when she visited him again on 6^th 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.

AY returned to Court. By applications dated 30^th June and 3^rd July 2012 she sought orders “to support and uphold her decision to refuse consent” for, and to prohibit, the administration of citalopram to X.

On 4^th July a direction was made requiring AY to serve the application and providing for further consideration on the first available date after 13^th August. Meanwhile, AY made 2 further applications to the Court:

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.”)

Then, on 18^th 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 20^th July X was again sectioned under the Mental Health Act, and moved to Poplar House at Plumstead Hospital.

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.

X was detained at Plumstead Hospital for a month before returning to W. Farm (not subject to any Mental Health Act powers) on 20^th August.

In this period of apparent improvement, AY made a further COP9 application to Court, dated 5^th September, seeking copies of responses filed to her main application, and consideration of her interim applications. Finally, on 28^th 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.”

Sadly, X’s informal status did not last long. On 16^th October 2012, he was sectioned again, and returned to Plumstead Hospital.

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 14^th November 2012. (Unfortunately, such productivity proved to be too much. On 8^th November AY made a further COP9 application seeking postponement of hearing to allow time for compliance with directions. A further order was made on 12^th November which relisted the matter on 24^th January 2013.)

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 19^th March 2013.

Before that hearing could take place, AY made another COP9 application (dated 7^th 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.

At the hearing on 21^st March 2013, the issues for determination by the Court were identified as follows:

On 26^th March 2013 the Official Solicitor accepted the court’s invitation to act as Litigation Friend for X.

The parties were not able to agree the identity of experts to be instructed. After consideration of their submissions, I made an order on 24^th May 2013 which

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.

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 27^th August an order was made in response providing for that application to be served on the other parties, and considered at the hearing on 25^th September.

In fact, that hearing did not take place. By COP9 application dated 20^th 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 24^th September, providing for the next day’s hearing to be vacated, letters of instructions sent to Dr Carpenter and Professor Williamson by 27^th September and their reports filed by 16^th December. A hearing was scheduled for 9^th January 2014.

Meanwhile, in August, September and October 2013 there were fifteen incidents of aggressive behaviour, and 2 of sexually inappropriate behaviour by X recorded (D154).

On 9^th 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).

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.

Notwithstanding the availability of the independent expert’s reports, at the hearing on 9^th 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 21^st March.

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 17^th he was noted to be settled again. (D244)

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)

By COP9 application dated 19^th March 2014 the local authority applied for revocation of the order appointing AY as welfare deputy.

At the hearing on 21^st 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 (Footnote: ¹).

On 15^th 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.)

On 22^nd May 2014 AY made a further COP9 application seeking

On 27^th 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 3^rd June. Subsequently the local authority applied (by COP9 dated 30^th 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 3^rd 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.

AY applied (by COP9 dated 23^rd June 2014) for a reconsideration of the order of 3^rd June. Effectively, she sought renewed consideration of the directions she had requested at the hearing on 21^st 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 25^th June 2014, her application was listed for an attended hearing on 8^th July.

At the hearing on 8^th 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).

On 28^th July 2014, X was discharged from section under the Mental Health Act.

On 19^th August 2014 X was admitted to hospital with an enlarged testicle. He was discharged back to R. Hill on 22^nd August, and the final hearing went ahead on 25^th and 26^th 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:

The Court subsequently received from AY a COP9 application seeking an extension of time until 6^th 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.

The Court has subsequently received from AY two further COP9 applications. The first, dated 11^th October 2014, seeks further time in which to consider the judgment of Baker J. The second, dated 12^th October 2014, states that final submissions were filed by 6^th 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.

Meanwhile, so far as I am aware, X continues to live at R. Hill. He has been given an unrestricted diet since 15^th 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.

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 14^th October. I have not been informed if it went ahead, or of its outcome.

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.

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.

It is agreed that X should remain living at R. Hill.

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.

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.

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.)

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.

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.

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.

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.

I remind myself in particular of the following provisions of the Mental Capacity Act 2005:

In respect of ‘best interests’ I remind myself of section 4 of the Mental Capacity Act 2005 and in particular

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.”

In respect of deputyship I remind myself of section 16 of the Mental Capacity Act 2005 and in particular:

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:

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.”

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

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.

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.)

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.

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.”

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 20^th 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.

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.”

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:

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.

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.”

In respect of treatment, Professor Williamson concludes that:

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.

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.

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.

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.

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.

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).

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)

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.

(a) AY believes 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.

(c) AY is unwilling to accept that X’s autism is the cause of much of his 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.”

(e) AY believes that X should be treated with “natural remedies,” such as 5HTP, instead of conventional psychiatric medication.

(f) There is no evidence of 5THP and/or dietary supplements having any beneficial effect on X’s condition or behaviour.

(g) There is evidence that X has benefitted from treatment with the anti-psychotic drug Olanzapine.

(h) AY’s approach to X’s diet has placed unrealistic and unworkable demands on staff caring for X.

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.

(i) AY will continue to try to arrange for “testing” of X with a view to establishing that he has a bowel condition.

(j) AY will continue to seek detailed recording and monitoring of X’s diet and bowel activities.

(j) AY will continue to support the use of a “nutritional protocol,” a restricted diet and dietary supplements for X.

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.

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.

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.

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.

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.