Judge: District Judge Hilder
Citation:  EWCOP 36
This case concerned the best interests of X in relation to his diet/treatment and a welfare deputyship. The application was brought by his mother, AY.
X was a young man of 25 years old who lived in a care home. He suffered from autistic spectrum disorder and had moderate to severe learning disabilities. He was fully dependent on carers to meet all his personal care needs, food and fluid intake and lacked capacity to make decisions about where to live, how he is cared for and the treatment he received.
AY considered that X’s autism had been acquired after birth and related to his receiving the MMR vaccination. AY’s view was that X’s behavioral challenges were reflective of a bowel condition which often left him “impacted” and in pain which he could not otherwise express. She believed that this bowel condition could and should be treated by means of excluding certain food types (gluten, casein and lactose) from his diet, and by giving him nutritional supplements.
AY also considered that she was best placed to make decisions about the welfare of X and as his mother she understood him best and had always acted in his best interests. Accordingly, AY contended that her authority as welfare deputy, which had been temporarily suspended, should be reinstated.
The local authority contended that AY took an unconventional approach to X’s care and treatment, and sought to impose her own views to the detriment of X’s wellbeing. Instead, the local authority maintained that X should have an unrestricted diet and medical treatment as advised by the responsible clinicians. The local authority sought revocation of AY’s welfare deputyship as it was it placing strain on those responsible for X’s day to day care. The OS was broadly supportive of the local authority’s position.
The Court made extensive findings of fact in order to reach decisions as to X’s best interests. Ultimately, the court found that when X’s diet was restricted and he was taking supplements, he remained autistic. When he had access to previously restricted foodstuffs and an unrestricted diet, there was no noted deterioration in his behaviour or the condition of his bowels. The Court held that restriction of X’s diet was an infringement of his freedoms and the requirement to take nutritional supplements was an imposition, neither of which were in X’s best interests.
The Court also held that AY’s views ran counter to the generally accepted approach in respect of treatment for autism. AY would continue to seek testing and administration of nutritional supplements. The Court was satisfied that it would not be in X’s best interests for AY alone to have authority to make such decisions for X.
This decision makes an interesting counterpart to that in A Local Authority v M & Ors  EWCOP 33, in which Baker J was faced with a mother who was a health and welfare deputy and held equally fixed views in relation to the role played by the MMR vaccine in the development of her son’s autism. In that case, Baker J did not – at least at the reported stage – go as far as removing the mother as her son’s deputy, but indicated that such a course was very much on the cards in the event that she was unable to demonstrate a fundamental change in attitude.
In the instant case, the Court had no doubt that AY was devoted to X and dedicated to promoting his wellbeing as she saw it. However, the Court was struck by the rigidity of her views and her refusal to accept professional medical advice. Rather, AY continued to pursue her views which worked against X’s best interests and therefore her appointment as welfare deputy was revoked.
The revocation of AY’s welfare deputyship meant that she alone would not have authority to make these decisions for AY. However, the Court emphasised that AY was not excluded from the decision making process. The revocation of the deputyship merely restored AY to the usual position for the parent of an incapacitated (adult) child where her views would be taken into account in making any decision in X’s best interests. The Court championed the usual approach of collaborative decision making and in the circumstances agreed with the OS that there was no need to appoint anyone else as replacement welfare deputy.
We would emphasise that there will be very many cases in which the appointment of a parent as the health and welfare deputy for a child with profound disabilities is entirely appropriate and correct so as to secure a privileged voice in decision-making. It often comes as a huge – and very unwelcome – shock to parents in such a position to discover that they cease to have any formal role at all in such circumstances when their child turns 18, and appointment as a health and welfare deputy can be very important. This case, though (as with A Local Authority v M) demonstrates the boundaries of the authority that a parent deputy can exercise.