‘I accept Dr Carpenter’s opinion that there is no evidence that any of these treatments were individually beneficial for M and that collectively they were intrusive and contrary to his best interests. M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities. I find that E has implemented a programme of diet, supplements and treatments and therapies indiscriminately, with no analysis as to whether they are for M’s benefit, and on a scale that has been oppressive and contrary to his interests. She has exercised total control of this aspect of M’s life.’
Mr Honourable Justice Baker, In the Court of Protection, Judgment, In the matter of the Mental Capacity Act 2005 and in the matter of M, 11 August 2014
Brian Deer has once again done a service to the autism community, by putting in the public domain the judgment of Mr Justice Baker in the case arising from a dispute between a local authority and the mother (E) and father (A) of a young man (M) with autism.
Deer’s report, published in the Sunday Times on 12 October, focuses on the judge’s scathing judgment on E, a prominent supporter of the claim by the discredited Royal Free researcher Andrew Wakefield of a link between the MMR vaccine and autism. Mr Justice Baker concluded that E had fabricated evidence of an adverse reaction to MMR in her son, invented a range of associated diagnoses, subjected her son to unnecessary tests and treatments, neglected a dental abscess and indulged in fantasy conspiracy theories.
This Court of Protection case offered a rare opportunity to ventilate in public some of the controversies that have raged in the world of autism over the past decade. In the USA, the Omnibus Autism proceedings in 2008-9 provided a public forum in which claims regarding vaccine-autism links and associated alternative treatments were exposed as scientifically baseless and clinically irresponsible.
Though Mr Justice Baker did not address the MMR link or alternative treatments in general, his 92 page report provides a devastating indictment of the role of a range of therapists in relation to M, some of whom appeared as witnesses. In addition to exclusion diets and supplements, M received homeopathy, cranial osteopathy, reflexology, naturopathy, light and sound therapy, auditory integration training and hyperbaric oxygen therapy. It is clear that E’s descent into irrationality and paranoia was supported and encouraged by a number of dubious authorities and therapists, with damaging consequences for her son and her family.
Three therapists gave evidence in support of E’s treatment of her son. Shelley Birkett-Eyles, an occupational therapist working in a private clinic, was accepted by Mr Justice Baker as a ‘responsible practitioner’, though he noted that her reliability was challenged by Dr Peter Carpenter, a consultant psychiatrist with a special interest in learning disability, the expert witness called by the local authority.
Dr Peter Julu describes himself as ‘autonomic neurophysiologist’ (based at the private Breakspear Clinic), though Mr Justice Baker questioned whether this was a legitimate speciality and noted that his diagnosis of ‘neurodevelopmental dysautonomia’ was disputed by Dr Carpenter, who also challenged the reliability of his assessments and treatments, particularly his recommendation of hyperbaric oxygen therapy.
Ms Juliet Hayward, a nutritional therapist, was censured for giving ‘advice well beyond her expertise’, in endorsing a diagnosis of Lyme Disease and in prescribing a dietary protocol without taking an adequate medical history. Mr Justice Baker concluded that he ‘was left with a profound anxiety about Ms Haywood’s influence on E and her role in the treatment that M has received.’
Mr Justice Baker was particularly concerned that none of these three had received training in issues of ‘mental capacity’ as codified in the 2005 Mental Capacity Act. He observed that ‘it was clear from their evidence that none of them had given proper consideration to the question whether M had capacity to consent to their assessments or the treatment they were prescribing’.
In addition to these therapists, E called as expert witnesses two veterans of the Wakefield anti-MMR campaign: Dr Ken Aitken, a clinical psychologist formerly associated with the (now defunct) Autism Treatment Trust providing alternative treatments in Edinburgh; and Mr Paul Shattock, a retired pharmacy lecturer from Sunderland, a long-standing promoter of exclusion diets and unorthodox biomedical therapies.
By contrast with other expert witnesses (including Dr Peter Carpenter, Dr Alison Beck, Professor Robin Williamson, Dr Gwyn Adshead, Mr Keith McKinstrie), whom Mr Justice Baker found to be ‘wholly reliable and professional’, he expressed considerable reservations about Aitken and Shattock:
‘I was concerned at times as to their qualifications to opine on some of the matters about which they gave evidence.’
In his conclusion, Mr Justice Baker categorically rejected the approach advocated by Aitken and Shattock in relation to M:
‘I stress, again, that I am not making any definitive findings on the efficacy of alternative treatments generally. That is not the subject of these proceedings, which are about M. I do, however, find that: (1) there is no reliable evidence that the alternative treatments given to M have had any positive impact on people with autism generally or M in particular and (2) the approach to prescribing alternative treatments to and assessing the impact of such treatments on people with autism in general and M in particular has lacked the rigor and responsibility usually associated with conventional medicine.’
Mr Justice Baker repudiated ‘the fallacy’ of E’s belief that there are two parallel approaches to the diagnosis and treatment of autism, each of which is equally valid:
‘The evidence in this hearing has demonstrated clearly that there is one approach – the clinical approach advocated by Dr Carpenter – that is methodical, rigorous and valid, and other approaches advocated by a number of other practitioners, for which there is no evidence of any positive impact and which (in this case at least) have been followed with insufficient rigor. Whilst each treatment may be harmless, they may, if imposed collectively and indiscriminately, be unduly restrictive and contrary to the patient’s interests. These disadvantages are compounded when, as in several instances in this case, insufficient consideration is given by the practitioners to the question of whether a mentally-incapacitated patient has consented to or wishes to have the treatment.’
Given his characterisation of E’s performance in court as controlling, manipulative, duplicitous and obstructive it was perhaps not surprising that Mr Justice Baker expressed some sympathy for the long-suffering family GP, Dr W. This ‘older-style family GP’ had been ‘tolerant and sympathetic’ and had maintained a good relationship with the family ‘until he went into the witness box’, when it became clear to E and her husband that, though Dr W had been attentive to the family needs and had responded to her requests to arrange investigations that he did not consider clinically indicated, he did not endorse her wilder theories and diagnoses. Though the parents later expressed ‘disillusionment’ with Dr W, Mr Justice Baker found his evidence ‘responsible, truthful and humane’.
13 October 2014
Michael Fitzpatrick has an autistic son close in age to M; he is a doctor, former GP and the author of MMR and Autism: What Parents Need to Know (2004) and Defeating Autism: A Damaging Delusion (2009)