Re FX

Summary

This interesting decision from last year which recently appeared on Bailii is the first reported decision where consideration has been given to questions of capacity in the context of Prader-Willi Syndrome ('PWS').   Although a decision of a District Judge, which does not therefore have any precedent value, it is of particular interest for highlighting some of the complexities which arise in relation to this condition.

The question was whether a 32 year old man, FX, had capacity to make decisions in relation to residence and care.  The man asserted throughout the s.21A proceedings (through his litigation friend) that he had capacity to make the decisions; the CCG (whom it appears must have been funding his care) asserted that he did not.

Both the BIA, SN,[1] and the independent psychiatric expert, Professor Tony Holland, were restricted in their ability to assess capacity by a refusal by FX to discuss matters which directly related to his PWS.  DJ Bell noted that "[t]his is a subject which FX finds embarrassing to talk of and which he fears may result in a deleterious outcome from his perspective. He has also expressed frustration about the number of professionals who have undertaken assessment work with him."  DJ Bell reminded herself of a decision cited as Re P [2014] EWHC 119 COP[2] in which Cobb J considered what conclusions should be drawn when a person deliberately avoids engaging or cooperating with the mental capacity assessment process thus "it seems to me that patient's lack of engagement or cooperation with the assessment may contribute in itself to a conclusion that a patient is unable to "understand the information relevant to the decision" (section 3(1)... a) and/or (perhaps more significantly, if the patient is shown to understand) unable to use or weigh that information as part of the process (section 3(1)(c))".   DJ Bell held that she was "satisfied that his reluctance to discuss his PWS arises from embarrassment and frustration. This explanation does not, in itself, establish that he has relevant understanding."

Unlike SN, Professor Holland found it difficult to engage with FX, DJ Bell noting that "[i]n undertaking his assessment Professor Holland considered records for FX from last year, he spoke with a senior staff member at Care Home C and met with FX on two occasions. On the first occasion for ten minutes and subsequently for forty minutes. Unfortunately, he established minimal rapport with FX and FX did not wish to engage with any discussion about his PWS."

Professor Holland concluded that FX lacked capacity in relation to residence and care; SN "could not conclude that FX lacks capacity in respect of residence and care. She described her discussions with FX, he would not discuss his PWS but in every meeting he has discussed some of the factors of his care and treatment. She was unable to establish on the balance of probabilities that FX's PWS (or any other mental impairment) is affecting his ability to decide on receiving care and treatment and what that care and treatment should be."

The difficulty that Professor Holland had in engaging with FX fed into his report, discussed by DJ Bell thus (in passages that merit reproduction as demonstrating so many of the issues that so often come up in our experience of capacity assessments):

42. Professor Holland explained that the basis of his opinion was one third assessment time with FX, one third general knowledge of PWS and one third from records provided to him (over a year old at the time). He acknowledged the limitations that this placed upon his assessment and said that he would have been much more comfortable had he been able to spend more time with FX. He accepted that his opinion should be treated with a degree of caution.
43. There are other reasons to be cautious about the opinion of Professor Holland. In his evidence he demonstrated an obvious knowledge of PWS and great commitment to improving the lives of those who suffer from it. Unfortunately, this seems to have led Professor Holland to conflate best interests with capacity. He acknowledged that with respect to understanding of relevant information he had set the bar quite high and linked this to the consequences of uncontrolled symptoms of PWS upon sufferers and the benefits to them of a tightly controlled regime particularly with respect to food security. In addition, he failed to conduct a proper analysis of the presumption of capacity. In his analysis the burden was shifted to FX to demonstrate that he possesses capacity. He was unable to provide a satisfactory answer to Mr O'Brien's question 'what did FX say to lead you to the conclusion that he lacked capacity having regard to the test under section 3?' He did not consider whether any of FX's reported actions were unwise decisions rather than indications of lack of capacity.
44. There has been a lack of clarity about the particular decisions to be made by FX. Professor Holland's evidence has been relied upon to support the second respondent's assertions of lack of capacity. In his oral evidence Professor Holland was clear that FX has the capacity to decide between two environments, as that is a more "concrete" decision and one where he could decide which he prefers. However, where all options are open, in his opinion FX cannot incorporate in to his thinking an understanding of his PWS and then he does not have capacity. This echoes his opinion set out at paragraph 2 of his 2^nd report:

'the question I asked myself is: if offered a free choice of any type of accommodation would FX be able to incorporate an understanding of the fact he had PWS into any decision he made about his residency? I conclude on the balance of probability that he would not. However, it is very likely that he would be able to form a view between two possible options both of which had food security.'

45. FX does not have two options to choose between (as confirmed by LB). Following LBL v RYJ a decision is not to be made by P in general or in abstract. On the basis that Professor Holland is satisfied that FX has capacity to decide between two options it must follow, as matter of logic, that he has capacity to make decisions about the place where he currently resides.
46. SN takes a different view. She has different qualifications to those of Professor Holland and her assessment was not ordered for the purposes of these proceedings. However, she had the advantage of being able to meet more extensively with FX and was able to have more productive discussions with him. She conducted her assessment from the correct starting point of presuming that FX has capacity and applying the relevant statutory framework and guidelines.
47. When I consider those matters about which there is evidence of FX's understanding […] I am satisfied that FX is able to understand, retain, use or weigh the relevant information set out in LBX v K &M and to communicate his decision. Professor Holland did not specifically address this with FX but confirmed in his oral evidence that he would expect FX to understand this. The assessment of SN reinforces this.
48. In addition, from the evidence of SN, I am satisfied that FX understands that he has PWS and that it is an eating disorder. He has identified that he needs support when going out in the community and that he needs support with portion control. He understands that rejecting support at Care Home A caused him to gain weight. He understands that he is overweight and that this affects his health. He knows that losing weight would improve his sleep apnoea. He wishes to lose weight and he is trying to do so. He understands that staff try to help him by suggesting healthy options when out but that sometimes he rejects advice.
49. I am satisfied that FX has capacity to make the relevant decisions in respect of residence and care as are required at this time. Should a situation arise where there are complex decisions to be made it may be necessary to reconsider issues of capacity in light of those decisions.

Comment

Questions of capacity in the context of Prader-Willi can be extremely complex (as discussed in this paper prepared by the PWS Association here).   On one view, the outcome in this case could be been as coming perilously close to the somewhat problematic conclusion that "so long as FX is taking sensible decisions he has capacity" (see also in this regard CDM discussed here). On the other hand, the judgment stands as an object lesson in following the route map of the MCA with care: despite the superficial disparity in expertise in relation to PWS, SN's care in following the route map of the MCA meant that her evidence carried greater weight than did that of Professor Holland.

[1] Who assessed his capacity on behalf of the local authority in the context of (it appears) renewing the standard authorisation; it would appear that she must have taken a different view to whomever it was had initially assessed his capacity because, as below, she concluded that FX had capacity, which would logically have meant that the original standard authorisation should not have been granted.

[2] Interestingly, this is not, as far as we can see, a reported judgment – should anyone care to provide the transcript for wider use, it would be much appreciated as this is a very useful paragraph!