“The focus of enabling support will be to assist A in developing a greater experience of opportunities and lifestyle choices available to her. This may be further learning, work related activities, leisure options, and/or developing social network with peers. The aim is to broaden A’s experience and independence in doing so, improve her ability to make informed decisions about her life generally and future aspirations.”
“A residential care placement is proposed as a means to provide a supportive environment which can meet A’s social care needs. Timescales for the identification of a suitable placement are proposed to be within the next two weeks to allow sufficient time for assessing the suitability in terms of environment, peer group, and preparing care plans with the service provider. There could be opportunity for A to visit prior to moving if this appropriate. Timescales may need to be revised and urgent action taken should there appear to be a risk to A’s safety. The placement will also promote A’s understanding of and compliance with treatment plans for epilepsy and endocrinology in cooperation with the relevant hospital health teams and also community team learning disability.”
“The primary reason for A’s proposed move to residential care is to address concerns related to her health and wellbeing. A is likely to need a period of sensitive, tailored emotional support to enable her to come to terms with a move to residential care as she is opposed to this plan currently. The move may be experienced as traumatic and distressing. A referral to health agencies who can provide psychological support will be considered as needed. A has significant health needs associated with epilepsy and primary-ovarian failure. She has been resistant to treatment plans, particularly in relation to the latter diagnosis. The aim of the plan is to provide a supportive, engaging environment where A’s understanding of the benefits of treatment and her compliance can be promoted more effectively.”
“…to reduce the risk of her absconding or coming to harm given the evident and expected level of resistance to this plan.”
“(2) A person must be assumed to have capacity unless it is established that he lacks capacity. (3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. (4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision. (5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. (6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.”
“It was considered that B was very reluctant for A to be admitted due to her own fears about hospital that she believes A shares with her. It was noted that B would not allow A to speak for herself and refused to allow A to provide a urine sample. B requested that A be discharged and follow-up to be arranged at home. The nurse questioned whether A could make this decision herself from her presentation. There was a further question raised about A not having experienced puberty and menstruation. B said that A did not want this to be investigated either.”
“A retains that she has met me before, but has not been able to recall discussions held previously. For example, I returned to see A the day after I had spoken to her and her mum, yet she should could not recall what the discussion had been about. When I advised her that we had been talking about the concerns at home, A replied, ‘There are no concerns. I want to go home.’ I explained that one of the concerns was that she isolated. She denied this and said she went out and had family and two friends. I asked A if she could recall talking to the doctor. She said she could. I asked what he had told her. She replied, ‘I think it was something to do with out patients appointments.’ The doctor had actually informed her that she had no ovaries or uterus. When I outlined the concern about her being socially isolated, she said she was not. She said she had her mum and her grand parents. I asked about friends outside of the family. She said she had two friends, one called Hannah. I asked how she knew her. She said her mum had gone to school with her mum. She said they sometimes go to the shopping centre together. The other friend was one she had previously discussed with the psychologist. She told me that she had been to a party at her house once. I explained that at 18, a lot of young adults were moving on, some went to university and got a flat. She replied, ‘Well, I don’t know about that but I’m okay at home with mum’. She appeared unable to weigh up that she had any option other than to remain at home with mum.”
“It also appears, in my professional opinion, that she, A, says things that she thinks her mum would want her to say, for example, she has said several times that she does not want a social worker but cannot expand as to why that is.”
“I do not feel at this time that A has the capacity to make this decision. Whilst she showed some understanding into her epilepsy and the reason for admission, she was unable to retain the information relating to the safeguarding concern for long enough to process it and make an informed decision. In my opinion, this is compounded by A often appearing to say things that she knows her mother would want her to say or being vague in her answers for fear of sharing information that her mother would not want her to. A only knows the life she has led and as such has no concept of life outside of living with her mother, being home schooled, and having little social contact.”
“Suspected learning disability. No official diagnosis but currently undergoing an assessment. Understands she is in hospital and named the hospital correctly and was able to give the appropriate length of her stay so far. Knew the reason for admission and described it as having more fits. Told me that her medication would be reviewed to make sure she is on the right treatment. Remembers seeing a psychologist and performing tests. A uses simple language and at times took a long time to answer but she was able to give answers at the end. Was happy to stay in hospital to wait for her discharge. Staff reported that she does not ask to leave the ward. A has capacity to make her own decision about her being accommodated in this hospital to receive care and treatment.”
“A lacks capacity to make decisions in regard to care and treatment and she appears to be unable to understand the consequences of not engaging with relevant health professionals with regard to managing treatment relating to concerns around her epilepsy and potential low levels of oestrogen. She appears unable to retain that there may be long-term effects and risks of current epilepsy medication if this is not monitored and reviewed and long-term effects and risk to her health if her oestrogen levels are not monitored and reviewed. There are concerns about A’s ability to weigh relevant information relating to her health and social needs and residence to meet those needs.”
“Overall, there is clear evidence that A suffers from an impairment or a disturbance in the functioning of the mind or brain, namely, and as the term is used in the International Classification of Diseases 10th edition F70, mild mental retardation also known as mild learning disability.. I am further of the opinion that A suffers from an autism spectrum disorder, namely F84.5, Asperger’s syndrome.”
“Accordingly, whilst not related directly to the current Court of Protection proceedings, that consultation with specialist genetic services may be warranted.”
“It was not clear as to whether these were in her own handwriting or her mother’s given that these are, based on other paperwork, near identical. A was secretive and refused to allow the specific content of the notes to be seen.”
“Whilst A displayed reasonable understanding of the factual aspects of the case, she significantly struggled with the more dynamic areas related to instruction or the arguments that may be put forward, either by herself or others. It was notable that she repeatedly referred to her pink folder of handwritten notes and her responses were concrete in nature with a lack of cognitive plasticity or an inability to extrapolate from one situation to another. It is my opinion that A displays an ability to understand the basic aspects of the current Court of Protection proceedings and that, with the aid of written notes, is similarly able to retain certain information. I believe there are significant deficits within her underpinning knowledge and understanding of terminology such that the responses she gives are, to a degree, rote learned. I do not believe that she is able to independently appreciate the gravity of the current situation or form a view such that this can be communicated to her legal representative in a manner that demonstrates she is able to appropriately weigh the information with which she has been provided. It is clear that she places universally exclusive weight to the views and opinions of her mother and grandparents and cannot appraise whether these are correct or further accept that there may be an alternative view. It was notable that at points where questions were raised that she did not have a pre-prepared answer for, she appeared particularly stuck and perplexed. Based upon the responses that she has given, the absence of true understanding, and retention of said information, and an inability to independently weigh the information, it is my view that A lacks capacity to litigate within the current Court of Protection proceedings. I would furthermore add that A’s lack of capacity to litigate is directly associated with her underlying mental disorders and that these compound her ability to appropriately appraise information given to her such that there is clear evidence that she is subject to undue influence of B. This view is based upon the responses of A at interview and the provided collateral information and general practice records, with the latter documenting the minimal contact between A and her general practitioners, arguably to her broader detriment.”
“I would additionally note the similarities within the terminology and language between the comments of B and A both within the documentation and during the two assessment interviews. Thus, I do not believe that the views of A can be relied upon in any way or that the court can be confident that the views she articulates are indeed her own. The presence of an underlying pervasive development disability also known as autism spectrum disorder), will further impair A’s ability to understand the wishes and motivations of others and thus the lack of cognitive plasticity or the ability to question the validity of others and their undermining motivations is clearly of extreme significance.”
“A was initially given binary options of residing at home or not residing at home and with the latter, further probes as to with whom she may live. It is evident that she lacks significant life experience and I would suggest that this is, at least in part, due to her up-bringing and home schooling. She does not appear to have any real peer group or social circle and appears to lack any independence, any independent living skills, or an awareness of her own privacy.”
“…one reference to possibility of having a husband and children, albeit the latter did not take account of the consequences of infertility as a resultof a primary ovarian failure and her refusal to take hormone replacement therapy. A gave stock responses to questions as to current and future residence and there was no evidence either of independent views that were her own, frequently misspeaking and then correcting her use of the words ‘we’ and ‘our’. A did not display any evidence that she had incorporated any of the comments from the first assessment into her appraisal of the same matters when asked the questions again in the second assessment. A relied heavily upon the views of her mother and thus again, whilst she is susceptible to the influence of others, this is a manifestation of her underlying Asperger’s syndrome and her inability to critically appraise the information that is presented to her due to her lack of reciprocal social communication, empathy, and ability to view things from a perspective of others. A cannot truly be deemed to understand, retain, or weigh the information relevant to the decisions.”
“A has capacity to make her own decisions about being accommodated in this hospital to receive care and treatment. She told me she wanted to go home as soon as possible understood this was depending on completion of her psychology assessment so appropriate help could be arranged according to her needs.”
“A is somewhat quiet and reticent in her general demeanour. However, in terms of core intellectual functioning, she has the ability at a verbal and non-verbal level to engage with the conceptual content of a variety of environmental experiences and stimuli to learn new ways and develop her adaptive skills in a variety of learning, recreational, and social environments. In the context of the need for clarification as to her intellectual capacity to understand the rationale and implications of giving Lasting Power of Attorney to a significant adult, in this current context her mother, B, I am of the opinion, therefore, that A does have sufficient core cognitive capacity to make a well enough informed decision in this regard. Notwithstanding this, however, she does have significant and specific weaknesses in working memory and processing speed and there is evidence that her competencies in reading accuracy, spelling, speed, and accuracy of her written expression are not as functional as they might be and certainly well below the level that would be predicted on the basis of her core intellectual abilities. The above evidence suggests a combination of elements consistent with a dyslexic profile, the main implications being that she is likely to benefit from help to achieve a higher level of efficiency and confidence when processing information, and when expressing her ideas in written form.”
“…to repeat the IQ assessment undertaken by [Mr P] and offer an opinion as to Asperger’s.”
“Obviously, A places great weight on mother’s views. As a child we acknowledge A had a degree of cognitive deficits and because home schooled, had limited exposure to alternative points of view.”
“in my report, and [Mr P]’s report, whether that is the case in two or three years’ time, I don’t know, if you took out the undue influence.”
“…profoundly lacking in life skills and naïve regarding accommodation, care, and support required.”
“A has led a socially isolated life to date. She has not had the opportunity to engage in usual peer interactions and it is not clear as to the precipitant for the decision for her to be home-schooled. As a consequence, it is my view that she is profoundly lacking in life skills and thus naïve regarding both accommodation, care, and support and her broader future options. Indeed, she does not really entertain the possibility of any alternative options for accommodation, care and support, education, employment, or a host of other areas, and she unquestioningly accepts that she will live at home with her mother.”
“As noted above, A’s inability to appraise the information and form an independent view is a manifestation of her underlying Asperger’s syndrome and her inability to critically appraise the information that is presented to her due to her lack of reciprocal social communication, empathy, and ability to view things from the perspective of others.”
“I have significant concerns as to the current issues relating to A’s physical health monitoring, her seizure control, and her refusal to comply with hormone replacement therapy. I believe that the undue influence of her mother, perhaps as a direct consequence of B’s reported dislike of hospitals et cetera, wholly prevents A from entering any discussion as to the merits of treatment or otherwise and that her underlying diagnoses prevent her from being aware that this process is occurring. I also note that her views are based upon the presumption that NHS staff lie and her reliance upon the stock phrase of “that’s private”
“From having an idyllic life in September 2017, A goes into hospital, to this, threats and misery. The last one and a half years has been threats and misery.”
“Dr Ince concluded: (a) In relation to the diagnostic test, A has a learning disability and also Asperger’s. In cross-examination, he was clear that, on the balance of probabilities, both impairments were present. (b) A lacks capacity to conduct the proceedings. Dr Ince reaffirmed that A did not have the ability to independently appreciate the gravity of her current situation. She continues to place significant weight on the views and opinions of her mother. This inability relates to the absence of A’s ability to use and weigh relevant information and is directly associated with her underlying mental disorders. (c) A lacks the capacity to make decisions about where she should reside and lacks the capacity to make decisions about her care and support needs. Dr Ince reaffirmed that A does not entertain the possibility of any alternative options for accommodation, care, support, education, or employment. A’s ability to understand her are needs is impaired. (d) A did not have capacity to make decisions as to her medical treatment. She did not truly understand the information related to her health conditions or the longer-term implication. A does not have the ability to understand, retain, or weigh the information relevant to the decisions on medical treatment that she has to make; and (e) A lacks the capacity to make decisions about contact with others. There was an inability to understand information relevant to the decision. She had impairments on retention of information.”
“With regard to the responses of A at assessment, there are clear deficits with regard to her understanding of the nature and purpose of the Lasting Power of Attorney. The responses that she gave were confused and contradictory and she particularly struggled with regard to life-sustaining treatment, the allocation of individuals to act in her best interests, and the definition of the term, of future changes to the allocated attorneys, particularly were her personal circumstances to change. It was notable that she continued to believe that her mother would be the best individual to make decisions on her behalf even if she was, at some point, to be married.”
“A displayed limited understanding as to the possible revocations at a future point and further could provide no explanation as to the rationale for the preparation of such a document in an individual aged 19 years, who is broadly fit and well, particularly given that the preparation appeared a direct response to poor treatment by hospital staff.”
“I want to live with my mother and my other attorneys at our home. I want my attorneys to get me out of hospital. I do not want to be at hospital. I do not want to go to any outpatient’s hospital appointments. I do not want to do any psychometric IQ or other IQ tests. I do not want Social Services in my life. I do not want a social worker. I do not want to go to any [something] appointments. I want my attorneys to give me my medicines. I want my attorneys to access all my medical and welfare records. Some of my hobbies and interests are, ballroom dancing, reading, listening to radio, outings to favourite places, for example, the beach, countryside shopping, [the shopping centre], going for walks. I like to eat with my attorneys and I like home cooked meals, and home baked treats. [Signed] A.”
“SK: What are your thoughts on proposed hormone treatment? A: I don’t want to take at the moment.. Want to wait and see. I want an opinion from a private endocrinologist . First wrong answer. Otherwise, no. SK: What about proposed changes to your epilepsy treatment? A: I don’t want it changed. Current medication is controlling my epilepsy. Has been a few years. I can’t understand why they want to change. I’ve spoken to a pharmacist and the epilepsy helpline. They say treatments are similar. SK: What about the risks with the current medication? A: I have been taking vitamin D. Want to stay on the same medication unless it doesn’t work. All I want is the truth. SK: Why do you think the current doctors are untruthful? A: I have had a couple of different diagnoses which have been different and therefore I want a second opinion.”
“In deciding what is best for the disabled patient, the judge must have regard to the patient’s welfare as the paramount consideration. that embraces issues that are far wider than medical. Indeed, it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination.”
“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of the treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”
“A doesn’t want to see a GP and now is of an age to make her own decisions.”
“Explained to them this difficult and distressing diagnosis. Ovaries have not developed properly and are so tiny as to be barely visible on ultrasound scans. Same for the uterus although, unlike the ovaries, this will grow with treatment. Neither A, nor apparently mum, were bothered by her lack of periods and being home schooled A does not have a peer group of class-mates with whom to compare physical development. She declined pubertal (inaudible) today by Sister Jackie. Reassured that she is at no major excess risk of fracture now. However, in order to develop into a mature woman and, crucially, to avoid getting premature osteoporosis (brittle bone disease) in her 30s and 40s rather than her 70s or 80s, she will need to start oestrogen replacement and continue for four decades. Understandably, she is not delighted by the prospect but we explained the lack of any viable alternative. She elected for oral over patch oestrogen replacement with progesterone deferred until after she has begun to experience vaginal spotting.”
“If this condition remains untreated, the long-term prognosis for A is extremely bleak with outcomes becoming correspondingly less good the longer she goes untreated. Psychological and social impact – we should first try to imagine ourselves as individuals of adult age still trapped inside prepubertal bodies, and with our minds, thought processes, and imagination not fully matured by exposure to sex hormones. There are fortunately just too few individuals with congenital hypogonadism coming to expert medical attention late in life who have never gone through puberty for there to be any kind of systemic study. However, experts across the world do talk to each other and discuss their more difficult cases and there is universal expert consensus that these individuals are deeply unhappy, have not led fulfilling lives, are socially isolated, have major issues of body image and self-esteem, and have a marked degree of alienation from the rest of society. They have great difficulty in forming physical relationships and, indeed, penetrative sexual intercourse, is extremely uncomfortable for any untreated hypogonadal woman. In my own clinical experience, I have taken a male or female patient aged over 40 through puberty around once every one or two years. None of them have expressed any regrets about going through this process. All were extremely pleased to have undergone puberty and all had significant regret at not having done so earlier. Neither I nor any colleagues has hitherto encountered an individual who truly, of their own free will, did not wish to go through puberty or whose parents did not wish them to go through puberty.”
“It was what we were aiming to do in York. I think it does need it so it is given in a more comfortable way, away from Dr X and his team.”
“There is universal expert consensus that these individuals are deeply unhappy, have not led fulfilling lives, are socially isolated, and have major issues of body image and self-esteem.”
“…ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them to exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.”
“Making use of the home safely – A needs supervision to ensure that she is using equipment, e.g. cooker, safely because of the risk of absent seizures; Accessing and engaging in work training, education, and volunteering – A has not had a range of opportunities for further learning or support to consider options for working or training; Develop or maintain family or other personal relationships - while A does have some family relationships and connections in the local community, there is a degree of social isolation from a peer group and limited opportunity to develop further relationships. Making use of necessary facilities or services in the local community – A needs support to access the community safely due to risk around her epilepsy.”
“I believe that A is experiencing a level of social isolation in relation to contact with peers and society in general. Her life experience has been restricted in relation to her education and social opportunities. A reports being happy with her lifestyle, but it is difficult for her to imagine any other way of living due to lack of concrete experience. It is difficult to judge the extent to which A’s social isolation and ability to maintain relationships is a result of learning disability and autism spectrum condition, or the impact of her isolated upbringing. The only way to determine this is by supporting A to experience more of the world outside of her current environment.”
“In order to deliver support effectively in the long term and address A's health and care needs, a period of socialisation and education needs to take place to support A to develop her own views. This would aim to increase her capacity to make decisions in these areas independent of her mother to the extent that this is possible.”
“A needs to be supported to develop her ability to live and think for herself, to experience the world around her and make choices based on this. Social care support, underpinned by advice from relevant health professionals, could offer A this opportunity. The absence of this support may not be as immediately life threatening as her relevant physical health issues, but will potentially result in a largely isolated life and significant psychological difficulties in the future.”
“You’re divine, dear, stay near me. Night and day, I pray that you will always stay as sweet as you are. Don’t change, dear. Don’t let them re-arrange you, dear.”
“B replied with comments including, ‘You could have got out of seeing the social worker.’ A replied, ‘Oh, well, I’ve got it wrong’ to which B replied that A would have to pay for the consequences for her actions saying, ‘You’re an adult now. Get on with it’.”