FX, Re

I am concerned with capacity issues in respect of FX. The proceedings are brought by FX through his litigation friend the Official Solicitor. The first respondent is A Local Authority and the second respondent is A CCG. During this hearing which took place on 31 October and 7 November 2017 FX was represented by Mr O’Brien, the first respondent by Ms Anderson and the second respondent by Ms Kelly.

The proceedings commenced by application dated 16 September 2016 as a challenge to a standard authorisation which authorised the deprivation of FX’s liberty at Care Home A. The standard authorisation came into force on 24^th of June 2016 with two further standard authorisations being granted by the first respondent for the periods 10 February – 9 March 2017 and 9 March – 8 September 2017, and by order of the court further extended to the conclusion of these proceedings.

During the course of these proceedings FX has asserted that he has capacity to make decisions in respect of residence, care, contact and finances. The first respondent was not satisfied that the presumption of capacity was rebutted. The second respondent’s position is that FX does not have capacity to make decisions as to his residence, care and finances at this time. It is not argued by any party that he lacks capacity in respect of contact. There is no dispute that FX lacks capacity to litigate these proceedings.

FX is 32 years of age. He has a diagnosis of Prader-Willi Syndrome PWS. This is a rare genetically determined disorder apparent at birth that is associated with particular physical and behavioural characteristics. These include developmental delay and likely mild intellectual disabilities, relative deficits in growth and sex hormones and in early childhood the emergence of a marked propensity to overeat (hyperphagia) that can result in life-threatening obesity if access to food is not controlled. There may also be an increased propensity to other behavioural difficulties including temper outbursts, repetitive and ritualistic behaviours, and skin picking.

FX has been assessed as having a full-scale IQ of 57. He has a history of placement breakdowns, problematic behaviours and safeguarding concerns with respect to his family. FX is overweight and has health problems such as skin complaints, type II diabetes, oedema and sleep apnoea which are very likely related to him being overweight. FX is relatively independent in many areas of his life. He is able to self-medicate, mobilise independently and perform personal care tasks. However, he is unable to control his compulsion to constantly eat and the majority of his care is focussed on this. Unlike many people with PWS he does not have particular routines or rituals and skin picking is not a severe problem.

Since the age of 18 FX has resided at various residential placements and has on occasion returned to reside with his family. Unfortunately, home care packages have broken down. He still visits and maintains a strong relationship with his family. When these proceedings were commenced FX resided at Care Home A. FX wished to move from there to Care Home B – a placement where he had previously resided. A lack of clarity about plans for FX’s future prompted this application. Ultimately Care Home B was not an available option. During these proceedings, on 28^th February 2017, FX moved to Care Home C a residential placement where he is settled and where he states he wishes to remain.

FX has been living at Care Home C with an agreed support plan that meets his needs. The support plan includes restrictions with regards to one-to-one support in the kitchen area, at mealtimes and community access and there are restrictions on cigarette breaks which are every hour. FX has one-to-one support to access the community and support for attending appointments

There have been suggestions by health professionals/the second respondent that FX should move to Care Home D this is a specialist establishment which caters for those who have PWS, however, at present this is not available as it is not registered by the CQC.

Throughout these proceedings FX has asserted that he has capacity to make decisions in respect of residence, care, contact and finances. This matter has been case managed to this hearing which was listed to consider the capacity of FX to make decisions in respect of those matters.

I have read the bundle of documents prepared for this hearing. I have read and heard the oral evidence of Professor Holland, Professor of Psychiatry and SN, Social Work Advanced Practitioner, with A Local Authority Mental Capacity Act Team. In addition, I had the benefit of meeting FX on 7^th November 2017.

A number of assessments have been undertaken in order to determine matters of capacity. For the purposes of these proceedings a jointly instructed independent expert Professor Tony Holland carried out an assessment. SN carried out an assessment dated 8^th September 2017 pursuant to her role as best interests and capacity assessor in relation to the standard authorisation, and LB, Community Matron, assessed FX’s capacity to make decisions on contact (18^th January 2016) and finances (25^th August 2016).

Professor Holland was instructed to assess and report upon capacity by LOI dated 28^th April 2017. He was asked to report upon FX’s capacity to make decisions about his care, residence, contact with others and finances. Professor Holland is a consultant psychiatrist specialising in the field of intellectual disabilities. He is Professor Emeritus in the Department of Psychiatry at the University of Cambridge. He has been the psychiatric adviser to the UK PWS Association for many years and is now their patron. He is President of the International PWS Organisation and along with colleagues has engaged in researching PWS for many years and has published peer-reviewed papers.

His first report dated 7^th August 2017 raised a number of questions, these were put to Professor Holland by letter of 2^nd October 2017 and his response is contained in his second report dated 12^th October 2017.

Professor Holland gave an opinion upon FX’s capacity to make decisions about residence, contact and finances. He felt unable to comment about FX’s capacity to make decisions about contact with others as this is very dependent on circumstances. He concluded that in respect of residence “on the balance of probabilities at the time I saw him, he lacked the capacity to make this decision for himself. He was not able to give coherent reasons for wishing to live where he is or to balance and weigh the various options.” With respect to decisions about care he could not determine whether FX recognised the risks of over-eating and FX was unwilling to reflect upon his future care needs. He concluded that as he did not understand and could not weigh and balance the relevant factors FX lacks capacity to make decisions about his care and treatment now and probably in the future. He concluded that FX has capacity to manage modest amounts of his day-to-day money as agreed with the support staff in his care plan. However, he does not have a sufficient understanding to plan and budget, to have the capacity to fully manage all of his financial affairs.

On 14^th August 2017 SN was allocated to carry out a Best Interest Assessment. Her assessment dated 8th September 2017 focussed upon “whether FX has capacity to consent to his current residence at Care Home C”.

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.

This case has been brought on FX’s behalf under s.21A Mental Capacity Act 2005 challenging the mental capacity and best interests qualifying requirements. This hearing has addressed the mental capacity requirement for which the test is set out at Sch A1 para 15 “the relevant person meets the mental capacity requirement if he lacks capacity in relation to the question whether or not he should be accommodated in the relevant hospital or care home for the purpose of being given the relevant care or treatment”

The question of FX’s mental capacity regarding decisions as to his welfare is to be answered by reference to the statutory framework provided by the Mental Capacity Act 2005 (MCA) and to the MCA 2005 Code of Practice. I have had at the forefront of my mind s.1 (2) of the Act which provides that “a person must be assumed to have capacity unless it is established that he lacks capacity”. Thus, in determining whether FX lacks capacity the burden of proof lies with the party asserting that he lacks capacity. The standard of proof is the balance of probabilities s.2 (4).

I have borne in mind that a person is not to be treated as unable to make a decision unless all practicable steps to help him do so have been taken without success s.1(3). The Code of Practice at para 4.16 states “it is important not to assess someone’s understanding before they have been given relevant information about a decision”. “Relevant information” is said in paragraph 4.19 to include “what the likely consequences of a decision would be and also the likely consequences of making no decision at all’.

A person is not to be treated as unable to make a decision merely because he makes an unwise decision s.1(4). Paragraph 4.30 of the code of practice emphasises the importance of acknowledging the difference between, on the one hand, unwise decisions and, on the other hand, decisions based on a lack of understanding of risks or an inability to weigh up the information about a decision.

A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or disturbance in, the functioning of the mind or brain s.2(1). For the purposes of s.2, a person is unable to make a decision for himself if he is unable to understand the information relevant to the decision, to retain that information or to use or weigh that information as part of the process of making the decision s.3 (1)(a)(b)(c).

Thus the test for lacking capacity involves two stages firstly whether the person has an impairment or disturbance (diagnostic test) and secondly whether the impairment or disturbance renders the person unable to make the decision (functional test).

In addition to the statutory framework I have considered case law referred to by the advocates or which I have identified as relevant. In A Local Authority v TZ [2014] EWHC 937 (COP) Cobb J states at paragraph 27 “when assessing the ability of a person to understand the information relevant to the decision, retain that information and use or weigh that information as part of the process of making that decision the court must consider all the evidence, not merely the views of the independent expert”. At para 28 he also cautions professionals and the court against being drawn to an outcome that is more protective of the (vulnerable) adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.

When identifying relevant information, Macur J indicates that the person must understand the salient information and it is not necessary for the person to comprehend all peripheral detail and that different individuals may give different weight to different factors LBL v RYJ [2010] EWHC 2665 paragraph 24. At paragraph 25 capacity is to be assessed in relation to a particular type of decision at the time the decision needs to be made and not the person’s ability to make decisions generally or in abstract.

The relevant information to be considered when determining a person’s capacity to make decisions about care and residence were set out in LBX V K and L [2013] EWHC 3230. Theis J lists these at paragraph 48 as;

The courts have warned about setting the bar too high, lest it operates as unfair, unnecessary and discriminatory against the mentally disabled PH v A Local Authority [2011] EWHC 1704.

In re P [2014] EWHC 119 COP at paragraph 26, Cobb J considered what conclusions should be drawn when a person deliberately avoids engaging or cooperating with the [mental capacity assessment] process: “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))”.

I must identify the relevant decisions in respect of which capacity arises? I bear in mind the comments of Macur J in LBL v RYJ, “capacity is to be assessed in relation to the particular type of decision at the time the decision needs to be made and not the person’s ability to make decisions generally or in the abstract”. In this case FX is not required to decide between two residences or between two care regimes nor is he being required to make decisions in general. The only decision to be made at present is about his current placement and the care regime there. In respect of his finances, he has a limited amount of money to spend every two weeks which is used to pay for cigarettes, snacks and drinks and miscellaneous items such as toiletries, does he have capacity to manage his finances at that level.

In order to determine whether FX has capacity to make the relevant decisions the S3 relevant information must be identified. What is the information which FX must retain, use and weigh? There is agreement that the relevant information is broadly similar to that suggested in LBX v K&L. Ms Kelly argues that due to FX’s diagnosis of PWS core information similar to that set out by Prof Holland in his second report at F105 is also relevant;

In her assessment SN identified the relevant information she considered FX would need to be able to able to understand, retain and use and weigh up as being similar to that in LBX v K and L.

Both assessors were restricted by a refusal by FX to discuss matters which directly related to his PWS. This 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. I am 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

It is Professor Holland’s opinion that FX does not fully understand the implications of having PWS. He considers that FX has a vocabulary that is sufficient for him to both understand and provide information about his condition but that being unwilling to answer may be some indication of the limitations of his understanding. He considers that it is likely that there is a combination of both unwillingness and a failure to fully comprehend the relevant issues.

In 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 was able to establish that in respect of residence FX wishes to remain living at Care Home C, that he has had enough of moving, he is “doing ok here”, in respect of care, that he accepts the need for food security and he recognised the need for staff support, he recognises that he has PWS.

SN met FX on three occasions and was able form a better relationship with FX. Indeed, when I met with FX he told me “I know S, I opened up to her”.

SN took a different view of FX’s understanding of his PWS. In her oral evidence she said that she believes that FX “knows what we are talking about but won’t say it”. He told her that in respect of his PWS he had commented more with her than other professionals. He acknowledged that he used to overeat but says “I don’t do that anymore“. She believes that FX acknowledges what it means to have PWS and links things to it but does not say it. He said that he was not happy at Care Home A and needed more support there because he was not happy. At Care Home C he is happier, he wants support in the kitchen and actively seeks staff out.

SN also considered the implications of FX’s unwillingness to discuss his PWS.

When SN explored FX’s understanding he was able to tell her the following; that Care Home C is a care home where the staff help you and it is his home. He likes staying at his mum’s and he is happy at Care Home C. He said that the other place (Care Home D) is too far away. He likes being in Care Home C as it is close to his mum and he knows people there. He described the staff as helping him when he goes out, staying with him whilst he makes his breakfast, helping him at lunchtime and making his dinner. He described Care Home D as “it’s for my PWS”. He refused to discuss his PWS but he did say that PWS is an eating disorder and that he was born with it. He was able to explain that when he goes out he has to make sure he has taken his tablets for diabetes. He said that he sometimes becomes frustrated with the staff when he is out “sometimes they ask me to buy diet drinks or fruit instead of crisps and I get fed up sometimes. I don’t like that but I am trying to lose weight and they are helping me that’s why they do it”. He also explained that he does not wear his sleep apnoea mask – “I don’t care what you say I’m not wearing it! If I lose weight that will help me so I’m not wearing it! Don’t talk to me about it!”. He understood that the cost of living at Care Home C is met by the NHS and Social Services.

In her oral evidence SN said that following the meetings with FX as detailed in her report, she met him on a fourth occasion and they had two telephone calls. He talked to her about Care Home D and his worry that it was far from his mum’s, that he would not be able to travel there, that he knows the current bus route and area but wouldn’t know the one from Care Home D. He also said that he has built relationships at Care Home C which he relies upon to calm him down and which he did not want to lose. He fears that if he moved he’d be unhappy and this would affect his behaviour. He said that he had not been happy at Care Home A and that had affected him. It affected his weight as he had pushed boundaries for example with respect to meals and in the kitchen because he didn’t get on with the staff.

She identified decisions made by FX for example rejecting an advice about wearing his sleep apnoea mask or choosing healthy food whilst in the community as being unwise decisions rather than evidence of lack of capacity.

With regard to his finances he was concerned at having his control of his finances taken away. He enjoys spending what he wants.

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.

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.

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”.

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.

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.

When I consider those matters about which there is evidence of FX’s understanding – as set out at paragraphs 36 – 41 above, 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.

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.

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.