AH v Hertfordshire Partnership NHS Foundation Trust & Anor (including costs) [2011] EWCOP 276

Case No COP11868544

IN THE COURT OF PROTECTION

IN THE MATTER OF AH

Venue Royal Courts of Justice, Strand, London, WC2A 2LL

Date 17/2/2011

Before

THE HONOURABLE MR JUSTICE PETER JACKSON

Between

AHApplicant

(1) Hertfordshire Partnership NHS Foundation TrustRespondents

(2) Ealing Primary Care TrustRespondent

Miss Jenni Richards (instructed by Mackintosh Law) for Applicant

Mr Sydney Chawatama (instructed by Capsticks Solicitors LLP) for Respondents

Hearing Hearing dates: 24-27 January 2011; Judgment date: 17 February 2011

JUDGMENT

Peter Jackson J:

Introduction

[1]This application is one of a series now before the Court of Protection concerning twelve adults with a number of things in common:(1) Because of lifelong disabilities, typically a combination of childhood autism and severe learning difficulties, they cannot care for themselves or make their own decisions.

(2) Until ten years ago they had spent most of their lives in large long-stay hospitals of the kind no longer found in this country.

(3) When those hospitals were progressively closed, and the other occupants resettled closer to their local communities, these individuals were considered to have needs that could not be met in that way.

(4) Instead, a new resource, known as SRS, the Specialist Residential Service, was designed and built for them, and they have lived there since 2001.

(5) Each lives at SRS under informal arrangements and none is subject to compulsory detention under the Mental Health Act. (A number of other residents are detained compulsorily, but there is no practical difference between their care and treatment and that of the informal residents.)

(6) In recent years the position of the informal residents (but not the detained residents) has come under review by the various local and health authorities who commission their care at SRS. These reviews have not on the whole been stimulated by any concern at the quality of care offered by SRS, but by good practice considerations underpinning the national policy which favours ‘care in the community’ wherever possible.

(7) The commissioning authorities have identified, and in some cases (including Alan’s), created, alternative homes which they consider offer greater opportunities for the residents to develop their full potential.

(8) Clinicians and care staff at SRS do not recommend a move, but would support the residents if a move were to take place.

(9) Independent psychiatric and social work experts advise that a move would be against the best interests of these individuals.

(10) Each individual is represented by a litigation friend. In most cases the Official Solicitor has performed this role, while in one case it has been undertaken by a father and in another by a brother.

[2]It is of importance that the NHS trust that is responsible for SRS has no plan to discontinue the service in the foreseeable future. Had the real issue been the continuation of the service rather than the interests of its individual occupants, the appropriate jurisdiction would have been judicial review and not the Court of Protection.

[3]As it is, the decision in each case is a welfare decision under the Mental Capacity Act 2005. This unusual need for multiple welfare decisions has made close case management important, and ways of streamlining the proceedings have been explored.

[4]This judgment concerns just one resident, Alan (AH). I have heard general evidence about SRS and particular evidence about him. At the invitation of the parties in his case I now give my firm provisional decision in the hope that it may assist the parties in the other actual or potential cases to reach conclusions. I have been told that the issues in those cases are similar to this one, but against the possibility of unexpected developments in the evidence, I defer making any final order in Alan’s case until the other cases have been decided at a hearing starting next month, or settled.

[5]I give permission for this judgment to be disclosed to others concerned with decisions about the future of the other residents, whether existing parties or not. It contains no finding that is formally binding in any other case.

[6]I have directed that the costs figures of all parties shall be disclosed by the time of the next hearing, so that minds are focused on that very relevant question.

[7]I will now give an account of the national context and of the service at SRS, identify the core evidence, and state my conclusion in Alan’s case as matters stand.

The national context

[8]As is well-known, there has since the 1970s been a move for people with long-term care needs to be looked after within their own communities rather than in long-stay hospitals. More recently, this initiative has been reflected in government publications emphasising the personalisation of care: see the White Papers Valuing People (2001), Our Health, Our Care, Our Say (2006) and Valuing People Now (2009), and the cross-governmental protocol Putting People First (2007).

[9]The policy includes the ‘campus closure programme’. In particular, there is unease at the presence on ‘health land’ of those who are not receiving the active medical treatment which those who are compulsorily detained are presumed to be receiving. Substantial funds have been given to health and local authorities to create local facilities to replace campuses. A specific goal has been the closing of NHS campuses and the ending of ‘institutional care’ by 2011.

[10]While care in the community may not be without its problems, it is clear that many, perhaps most, of those resettled after lifetimes in long-stay hospitals have benefited. However, it is not an absolute policy, still less is there anything unlawful about ‘campus living’. See, for example the statement by the then Minister of State John Denham on 24 October 2000 (Hansard, HoC 24 October 2000: Column 199-200), which emphasised the importance of ensuring that ‘any decisions are based on the overall best interest of the individual’, and continued:

‘The Government are strongly committed to ensuring that people with a learning disability have the right to choose the kinds of services and accommodation they prefer ... We also acknowledge that small-scale domestic accommodation can often provide a high quality of care. Such accommodation can offer more potential for social inclusion and enhanced rights. However, as in any society, some people choose - for a variety of reasons - to live in alternative communities ... People with a learning disability should also have that right and choice wherever possible’

[11]Likewise, at 7.19 of the Valuing People White Paper, it was made clear that the option of NHS campuses remained. The Government expected the options to include ‘village and intentional communities’, comprising houses and some shared facilities on one or more sites.

[12]While it has not been suggested that care providers are bound by guidance in this area, national policy is not of course irrelevant. It is based on important, wide-ranging research, and has certainly informed the views of those proposing to move residents away from SRS.

[13]For its part, the court applies the statutory welfare test set out in the Mental Capacity Act 2005, which it is unnecessary for me to lay out in this judgment, and balances the sum of the certain and possible gains from change against the sum of the certain and possible losses.

[14]The person-centred approach set out in the pre-legislative material finds statutory effect in the checklist in section 4 of the Act. Sub-section (1) cautions against making assumptions about a person’s best interests based on their condition. Assessment of an individual’s best interests cannot be dictated by a generalised concept of what is best for a population group. This principle counteracts patronising assumptions of incapacity, but it is of equal application to generalisations that are over-optimistic. SRS

[15]SRS is managed by Hertfordshire Partnership NHS Foundation Trust (‘HPFT’), which employs the staff and is the provider of accommodation, treatment and care services to the residents. The site is within the grounds of the former long-stay Harperbury Hospital. In the light of individual assessments of each of the residents of the old hospital, the commissioning bodies concluded that a small group of residents (initially 25, but later increased to 33 as a result of failed moves into the community for some other residents) needed long term specialist care and had such complex behavioural problems and severe learning disabilities that a specialist service was required for them. The recommendation from the consultation process was for ‘A small specialist development for those residents who have very severe learning disabilities and very severe challenging behaviour who require a service that will provide security, space, very specialist staffing and readily accessible day services.’ It was intended that the service would provide ‘a home for the residents concerned as long as the service is appropriate to meeting their needs, and for the needs of future generations’, and that it would be a service ‘designed and planned around the individual needs of residents’ providing ‘a safe, calm and homely environment’ and ‘maximum opportunities for community presence and participation’.

[16]HPFT was chosen as the provider of the new service following a detailed selection process. Because it had, under another title, been responsible for the service at Harperbury Hospital, many of the staff were able to move with the residents. In consequence, a significant number of staff members have known the residents for decades.

[17]All but one of the 33 residents have lived at SRS since it opened in early 2001. About 14 are detained under the Mental Health Act 1983; the remainder, including those concerned in this litigation, are not.

[18]There was much consultation at the time about the design of SRS with the relatives of residents and with the National Autistic Society. The seven bungalows, two for women and five for men, were specifically designed to meet the needs of service users with autism and with severe challenging behaviour. Each bungalow houses between four and six residents, who each have their own bedroom. There are shared living areas, kitchens and bathrooms and each bungalow has its own self-contained garden.

[19]A day centre (the ICAN Centre) is a few minutes walk away. It is used for sessions on weekdays, for gatherings, activities and special occasions. Each resident has a programme suited to their individual needs, generally with an activity every day. There are buses in which residents make frequent trips out of the grounds, to shops, parks, cafés etc., planned according to their needs.

[20]The overall environment is rural, with trees and open grassy spaces. The buildings are connected by quiet roads with little traffic and very low speed limits. Other health service facilities lie within the grounds; their nature and use may change in the future.

[21]The facilities at SRS have been praised by the National Autistic Society as being ‘very autism specific’,‘quiet, tranquil and yet homely’ and ‘a very unique service’.

[22]As well as the experienced staff who care for the residents in their bungalows, there is an on-site multi-disciplinary team comprising a consultant psychiatrist (Dr Thalayasingam), a consultant clinical psychologist (Dr Peshawaria), and trained nursing staff. There is also access to a range of other professional disciplines such as a speech and language therapist, an occupational therapist, an aromatherapist, a dietician and advocates. Medical needs and crisis management are dealt with on site, avoiding the need to involve outside practitioners with whom residents would be unfamiliar. Fortnightly meetings to discuss each person’s situation are held by the multi-disciplinary team.

[23]Experts in these proceedings say this of SRS in their reports: Dr David Thomas, consultant psychiatrist in learning disabilities, East London NHS Foundation Trust: The SRS is widely acknowledged as providing comprehensive and multidisciplinary care to a very high standard and the service has received local and national recognition for this. Stewart Sinclair, independent social care expert: ... a purpose built `bespoke' service which is not even a decade old ... it appears to provide a high quality input to its residents in a location that is both safe and tranquil.

Alan (AH)

[24]Alan is 48 years old. He has severe learning disabilities and childhood autism. He has no verbal communication. He began to show difficulties at a very early age. He was cared for by his family until the age of eight, when he moved to Leavesden Hospital, where he remained in the children’s ward until the age of 16 and the adult ward until the age of 33. In May 1995, on the closure of Leavesden, he moved to Harperbury Hospital. When that closed, he moved on to SRS in 2001. Each of these moves caused significant distress and unsettlement for Alan.

[25]Alan lives at 3 Forest Lane with 4 other men. He attends the ICAN centre on most days and he goes out on carefully planned trips. His parents visit him regularly and take a close interest in his welfare.

[26]Alan has a long history of challenging behaviour. At times of stress he can hit himself on the legs, hands, thighs and head. He has more than once smashed glass fire doors with his head. He can also act inappropriately, for example by stripping off his clothes, or by rectal digging. These difficulties are exacerbated by changes in his routine or environment, but they have been steadily reducing since he has been at SRS.

[27]A major limiting feature arises from Alan's Pica behaviour (the word derives from ‘magpie’ and refers to eating inedible objects). He is obsessed with cigarette butts, which he will seek out and eat. This places him in situations of danger, for example by his dashing into the road to pick up butts or snatching a cigarette from someone's mouth or hand to place in his mouth. This is relatively easily managed at SRS, as there is a controlled environment where smoking is not allowed within the grounds. However, whenever Alan is in a situation where cigarette butts may be found, he becomes highly aroused. A habit that might be viewed with levity is in fact a major obstacle to his being able to go into the community, as cigarette butts are to be found everywhere on roads and pavements and Alan is expert at finding them. The staff at SRS have succeeded in weaning other residents from obsessions of this kind, but Alan has been resistant and the only remedy is to keep him away from places where cigarettes are to be found.

The case for a move

[28]The commissioning authority is Ealing Primary Care Trust and Ealing Council. The interim Head of Disability Services, Cheryl Batt, has been a social worker working in the field since 1988, and joining Ealing in 2005.

[29]She explained that most of Ealing’s ‘customers’ had been at Leavesden and were resettled when that hospital closed. One other Ealing resident at SRS is subject to a Mental Health Act section and is thus not covered by government resettlement policy. In fact his needs and care are comparable to Alan's, so the difference between their two situations is a chance effect.

[30]Ms Batt described the proposed placement at 376 Uxbridge Road. The accommodation is an old children's home which is in the process of being converted into four flats. It is proposed that Alan moves into a ground floor flat. The other units are reserved for two occupants placed by other authorities and it is possible that the other Ealing ‘customer’ at SRS may be allocated the fourth. Alan's would have his own bedroom, wet bathroom, kitchen, living room and patio and personal access to a 150 foot garden. She explained that the front of the building would be secured, probably with a wall. Sensors would be in place so that individuals can have their own space but staff would be aware of their moving around. She described the staffing arrangements, which would involve one-to-one attention to Alan and the opportunity to personalise his space and his routine. She spoke highly of the agency that would provide the services and of the support that would be available from within Ealing's own resources.

[31]Ms Batt explained that Ealing expected therapeutic benefits for Alan from a genuinely bespoke environment which is not affected by the needs of other inhabitants. Ealing has experience of other cases which show such benefits. They would build on the really good work at SRS. The Uxbridge Road project is the first time that Ealing has been able to design a project in this way and Ms Batt feels that it is an exciting prospect.

[32]The core of her evidence was the belief that people benefit enormously from opportunities in unexpected ways. She had not heard anything to suggest that this would not be true of Alan. She referred to the philosophy of Valuing People and its message that too often adults do not get choices.

[33]Asked about the evolution of the plan, Ms Batt acknowledged that the plan drew no support from any of Ealing’s internal documentation, which has confirmed at every stage that Alan's needs are being well met where he is. The various assessments all acknowledge the immediate detrimental impact of any move. In one case it was said that it would be felt by Alan as ‘bereavement’. The only identifiable impetus for a move is the philosophy referred to above.

[34]Ms Batt also accepted that, in the circumstances in which it found itself, Ealing had never conducted a baseline balance-sheet exercise about whether it was in Alan's interests to move or not. Its assessments had either been conducted on the assumption that he would one day have to move, or took the form of arguments justifying a decision already taken.

[35]I interpose that this is not without importance. The MCA Code of Practice may be stating the obvious when it says at paragraph 5.13 that ‘it is important not to take shortcuts in working out best interests and a proper and objective assessment must be carried out on every occasion’, and at paragraph 5.15 that ‘Any staff involved in the care of a person who lacks capacity should make sure a record is kept of the process of working out the best interests of that person for each relevant decision, setting out: how the decision about the person’s best interests was reached, what the reasons for reaching the decision were, who was consulted to help work out best interest, and what particular factors were taken into account.’ This is a process which the Court must also carry out, but it is not one which Ealing has itself undertaken.

[36]Although Ms Batt argued for the benefits of Alan being part of the ‘local community’, she accepted that he had no conception of any connection with Ealing, having lived in an institutional setting in Hertfordshire for 40 years. She gave instances of increased opportunities that could be open to him: leisure centre, gym, swimming pool, gardening, involvement in local projects, National Autistic Society Acton Centre, etc. She saw him as being genuinely part of an integrated community which could not be replicated at SRS.

[37]Ms Batt’s evidence was clearly given. Her commitment to carry out national policy in the interests of her service users is not in doubt. It is understandable that Ealing should be upbeat about the prospects of a move for Alan. Inevitably, the foundation of a service such as 376 Uxbridge Road requires energy, enthusiasm and proper professional optimism. However, these issues have to be looked at realistically. In considering whether increased opportunities would benefit Alan one has to consider a number of questions. What is his capacity for greater achievement? Can it be met where he is? What would the significance of greater achievement be for Alan? Would it make him happier and more fulfilled? What are the risks involved?

The case for remaining at SRS

[38]This was first put by Alan’s parents. They both attended the proceedings and gave evidence. They oppose the move from SRS, as does Alan's sister. They are delighted with SRS and feel confident that Alan is being well looked after. They particularly appreciate its safe environment, with Alan having the advantage of a big garden and the ability to go for accompanied walks outside his bungalow. They feel that he is happy. They explained that he does not like physical affection and recognises them as familiar people, but not as parents. Now that they are themselves in their 70s, they are anxious to know that he will continue to be well looked after for the rest of his life.

[39]While Alan's parents are very appreciative of the efforts made by Ealing, they believe that the intended change would be meaningless for Alan and would in fact offer him less in terms of freedom and safety. He would lose the big garden that he knows and would be unable to go for walks outside his building because of the situation on a main road. They also feel that he might miss the fact that at SRS there is always something going on, which he can take part in or not as he wants. 376 is a beautiful property, but suitable for someone more able than Alan.

[40]Alan’s parents described how they still saw him as a child. Although he has not lived with them for 40 years, it was apparent from the way they spoke about him that they could not love him more.

[41]Dr Thalayasingam (consultant psychiatrist at SRS) has been Alan’s consultant since January 1999 and had been a junior doctor at Harperbury Hospital for some years before that. She explained that the great majority of the occupants have severe childhood autism as well as learning difficulties. These two features are quite distinct and compound each other. The autism means that residents do not like or seek out social interaction. This differentiates them from those who have learning disabilities alone.

[42]Only one of the 33 occupants has been moved into the community, with his place being taken by an incomer. Unfortunately the outgoing transfer was not a success.

[43]Dr Thalayasingam said that when she first knew Alan he was not engaging but just existing. He was mostly curled in a foetal position. He had not been able to be resettled when Leavesden or Harperbury closed. SRS was the solution for these 33 patients. It is based on the principle of community life and person-centred planning. Speaking of national policy, she said that it did not consider the group of people who are so severely handicapped that placement in the community is not possible.

[44]Even though the move to SRS involved no change of staff or service users and enormous efforts were made to keep everything consistent, there was still a significant effect on Alan’s behaviour. He engaged in serious head-butting, injuring himself. He would rub his eyes so hard with his fists that he gave himself black eyes. There would be outbursts of aggression. After these early years there has been significant progress. Alan has learned to tolerate others and can do simple chores such as laundry. He has moved from stage one (trips out on a bus) to stage two, which allows outings to safe places such as parks. His Pica behaviour has become better since the grounds became a smoke-free zone, and he is not self harming. He has a stable staff team and enjoys the ICAN centre.

[45]She explained how any visits to external health providers have to be extremely carefully pre-planned and managed.

[46]Dr Thalayasingam visited the outside of the Uxbridge Road property, which is currently a building site. She has serious concerns because it is on a very busy main road and the pavements and roads are littered with cigarette butts. It would not be possible for Alan to go outside unless heavily physically restrained because of the risk of him running after cigarettes. His obsession is such that he would snatch them from people’s mouths and put them in his own mouth, burning himself. He has no traffic sense and would be at serious risk. A vehicle would be needed at the front door as he could not walk about in the local area. She also felt that he would be likely to try and break out to get at cigarette butts once he realised that they were outside in abundance.

[47]She commended the trouble that Ealing had gone to in recruiting staff, saying that she was impressed by several of the initiatives that had been taken. Even so, a transition of perhaps 3 to 6 months would be necessary. Alan takes a long time to get to know someone new.

[48]Dr Thalayasingam was in support of community placements for the vast majority of those previously housed in institutions. She was nevertheless respectfully sceptical of what this would mean for Alan. She pointed out that he cannot manage his own toileting needs and that the opportunity of more complicated tasks, for example in the kitchen, was problematic. The idea that he could have free access to drinks was not realistic because he was never satisfied and endangers himself with hot liquids. Greater community involvement was a noble ambition and she thought that Alan, who already has outings almost every day, might benefit from more outings. He has absolutely no idea of having his own front door, nor does the concept of living on ‘health land’ or ‘in the community’ have any meaning for him.

[49]She particularly explained how Alan does not seek interaction, although he has begun to tolerate it. An increase in spontaneity in daily activities is absolutely not in his interests. Alan benefits from predictability, not spontaneity. The minimising of change is the gold standard with people in Alan's position. Change has in the past caused challenging behaviour and anxiety. It could cause mental health problems, such as depression, which would be hard to detect, and might lead to Alan withdrawing. Referring to an assessment by Ealing’s psychologist, Patricia Brigden, she said that SRS had acted upon most of her (relatively minor) recommendations.

[50]The key features for Alan were his environment, the people that care for him and his routine. He had suffered a big effect on the move from Leavesden to Harperbury. The move to SRS had been less stressful as the only thing that changed was the building. Nevertheless they had to contend with stripping, incontinence, rectal digging and grabbing drinks. She worried that if things went really badly after a move, Alan could end up on a mental health ward. Currently he is not unsettled and appears happy. He never makes any attempt to leave and has been seen to smile.

[51]She confirmed that SRS now has a future and that the trust has no plans to close it down.

[52]Dr Peshawaria (lead consultant clinical psychologist) has been at SRS since 2000 and known Alan since 2002. She has had periods of intense involvement, notably in 2002 to 2004 when he exhibited very challenging behaviour. Since then he has improved. Progress must be made through graded steps followed by periods of consolidation. It is important to keep his arousal levels low and to manage one change at a time.

[53]She spoke of the goal as always being to take Alan further, but she had serious concerns whether this would be achieved by a move. She drew attention to the huge limitations arising from his embedded Pica behaviour and the risk that he would injure himself by trying to leave the property. She was afraid that if his challenging behaviour returned, Alan could be back to square one.

[54]Dr Peshawaria saw the need to keep philosophies of care on one side and clinical needs on the other. She personally subscribed to the community care philosophy but felt that Alan’s needs were being met in a tried and tested way. She thought that ‘we have to have very good reasons for bringing any anxiety to a service user’. She worried that a move to Uxbridge would in effect be taking him backwards as he would have to get into the bus at the doorstep, rather than be able to go for a walk as he currently can.

[55]Overall, she agreed with the opinions of Dr Thomas and Mr Sinclair (below).

[56]Fiona O’Connor is the acting manager of the ICAN centre. She has known Alan for 15 years. He has some seven sessions a week at the centre and his community outings are also coordinated from there. She emphasised his insatiable appetite for cigarette butts and problems with him taking other people's drinks. She confessed that in comparison to others, Alan's rate of progress has been quite discouraging. They had struggled to achieve more community involvement for him. Greater attempts have been made in this direction since October 2010 against the background of this case, both to prepare Alan and others for a possible move and also because of the intrinsic benefits. Ms O'Connor explained the way in which Alan is able to benefit from communal events. She said that he prefers large spaces to small ones, large rooms to small rooms, and that he enjoys parks.

[57]Dr David Thomas, the jointly instructed independent consultant psychiatrist, has direct experience of working with community learning teams in a number of London boroughs. In his report he advised that a move was not in Alan's interests and he maintained this view even more strongly in his evidence.

[58]In the first place, he described SRS as an unusual and brilliant resource. He knew of no other service that had been designed around the needs of identified challenging patients, and where the patients had settled so successfully. He had personal experience of building services in the community, not all of which had been as successful. He observed that Alan is very used to rural living and that the concept of moving into the city was not particularly appropriate for him. Alan is settled and flourishing. Contact with the ‘normal community’ is not a particularly meaningful aspiration because of Alan's extensive childhood autism on top of his very severe learning difficulties. He agreed with Dr Thalyasingham that the minimising of change is the gold standard for progress with people in Alan's position.

[59]He saw literally no advantages of a move to Uxbridge Road. He could find no clinical imperative and felt that the project was being promoted purely from the need to comply with government policy. If SRS was going to close, a move would have to happen, but this is not the case.

[60]He had anxieties about the intensity of one-to-one staffing. Alan may not be the most rewarding person to care for and there would be a risk of burnout and staff turnover in even the best managed small team. He was not convinced that this was better than the current shared staff arrangement. This was particularly the case if Alan's behaviour became challenging.

[61]He thought the risks involved in the move were predictable. It would involve the dismantling of a structure designed to reduce sensory overload on Alan and separation from staff who had known him in many cases for 20, 30 or 40 years. He would be placed in unpredictable circumstances and challenging behaviour would almost certainly result, as it had done during previous moves. However, this time Alan would be faced with ‘the biggest leap ever’ and Dr Thomas said ‘I cannot see anything other than very serious deterioration in his mental state and behaviour’.

[62]He was also concerned about the physical environment at Uxbridge Road, beautiful though the building is. Its more confined spaces might make it difficult to control any physical aggression of the kind that might be expected.

[63]Dr Thomas's view was that for a move to be recommended it would have to have clear benefits outweighing the risks. In fact he saw any benefits as being very speculative and the only thing that was sure would be prolonged difficulty and distress, even with the most skilled help. Actually, SRS was more suited to Alan than central London. The plans and expectations were unrealistic and were setting Alan and his carers up to fail. The ambition of Alan walking on local roads and visiting cafés was not realistic: he would be at risk on the road and in danger of assault by members of the public who objected to his behaviour. Dr Thomas said that Alan is as well settled now as he has been at any time in his life, and with this plan ‘we are not doing him any favours’.

[64]The move might be realistic and achievable if Alan did not have childhood autism. However, his problems are not short-term and cannot be changed overnight. He does have some capacity to change, but at a slower rate as he grows older. Dr Thomas could not say that if Alan could achieve more he would be happier. What makes him happy is stability and predictability.

[65]Mr Stewart Sinclair is an independent social worker. He has worked in the field of learning disability in hospital and community settings for over 30 years. In his reports he firmly advises against moving Alan from SRS. He described SRS as a unique facility, offering more than the sum of its parts. It represented a synthesis of everything that has been learned about supporting people with incredibly complex needs who have lived in institutional care all their lives. It has a stable staff group. It feels like a private estate and not an institution or a hospital. He supports Dr Thomas’s views.

[66]The effect on Alan of a move would be akin to bereavement from everything that is familiar to him. He accepted that 376 was a fantastic service for somebody, but it is a completely different system to SRS. He was particularly concerned about the loss of the current stable staff group, which in a sense is Alan’s surrogate family. He was not confident that continuity of staff would be maintained, even with high-quality agency providers. He also had significant concerns about the one-to-one model of care. Looking after people like Alan is relentlessly challenging and you need relentless vigilance. There is a risk of burnout. Because of the lack of emotional feedback, the rewards of looking after those with childhood autism are different to those gained from looking after those with severe learning difficulties. He also considered that Alan would be more vulnerable to influences from and changes in the other occupants of Uxbridge Road, and that this represented another large variable.

[67]The aspirations expressed by Ms Batt for Alan did not seem to him to be relevant. Some of the activities she mentioned were ‘on another planet’ and undervalued the huge effort and skill that had already been put in to developing Alan’s abilities. He considered that Alan is probably near to his maximum potential, but with room for evolution and possibly for slightly more contentment. He saw no evidence that this was likely to be achieved in a ‘community setting’.

[68]At the moment Alan receives the gentlest of institutional care and Mr Sinclair considers that he is owed this. He said that we did not know how fragile the individual components of Alan’s ‘biosphere’ are and he was very concerned that, if things went wrong, Alan risked ending up having to make another move and being placed under a Mental Health Act section. He saw no reason at all for exposing Alan to these risks. He was in favour of enhancing the experiences of those for whom it offered a benefit, but warned that there is another side to placements in the community. The community is not always a welcoming place and he has experience of failures.

[69]Submissions on behalf of Ealing were made by Mr Chawatama. He stressed that, so far as Ealing is concerned, the issue is emphatically not about any inadequacy or poor quality of provision of services at SRS. Rather, it is whether the proposed move will offer the opportunity for growth and development; consolidating and enhancing the undoubted progress that has been achieved by dedicated staff over the years at SRS. He argued that there is now a golden opportunity for continued improvement to Alan's quality of life through greater social integration. He accepted that this would be a bold step, but pointed to the evidence-based research supporting community living.

[70]Mr Chawatama emphasised the quality and individual features of the care package that is now available, and a high priority that is being given to Alan. He submits that it may matter to Alan to have his own space, and greater control over it. The benefits of community living may matter to him. Given his current stability and the availability of such excellent accommodation, now is the optimum time for relocation. Although there is no plan to close SRS, this may not be the case throughout Alan's life.

[71]In summary, a move would be in accordance with best practice and with Alan’s best interests. Regard should be had to the depth of experience of Ealing’s Learning Disability Team [I agree], and the court should find that ‘the circumstances that pertained at the establishment of SRS are probably of historical interest only’. [I do not accept this proposition, which has no foundation in the evidence.]

[72]Submissions on behalf of Alan were made by Ms Richards. She emphasised the many advantages of Alan's current existence and the lessons that can be learned from previous moves. Here, the proposal is for a total change of environment, personnel and routine – a ‘triple whammy’ for someone for whom minimisation of change is the gold standard.

[73]The justification for a move is said to be to provide Alan with a more ordinary life in a more local community. There is no evidence that he would benefit from this; indeed it could be catastrophic. Far from the evidence showing likely benefit, the new proposal is less suitable for Alan than what he has at the moment. Communities can take many forms, including the unusual community which comprises SRS.

Conclusion

[74]Having set out the evidence and submissions in some detail, it is unnecessary for me to draw elaborate conclusions.

[75]It has in my view been convincingly demonstrated that it is not in Alan's interests to be moved from SRS. In the realms of(1) physical environment,

(2) personnel, and

(3) routine, I find that Alan’s needs are in fact better met at SRS than they would be in London. Specifically: (1) He is better off in rural Hertfordshire because of his particular characteristics and because he has lived there almost all his life; (2) His current staff group could not be bettered, and may not be equalled after a move which would deprive him of almost every familiar face; (3) There is no justification for the upset, possibly amounting to serious harm, that would be caused by even the most careful attempts to dismantle and rebuild his cherished routines.

[76]I accept in its entirety the evidence of the witnesses recorded in paragraphs 38-68 above. Each witness was in their own way clear and coherent. In combination their conclusion is irresistible.

[77]Although the ambition to maximise Alan’s opportunities is laudable, it has not been possible to identify a single dependable benefit arising from the proposed move. The thesis is that it would provide him with a greater experience of ordinary life in a local community, and that this would improve his quality of life. Each element of this proposition is incongruous with the realities of Alan’s life. His experience is so far from being ordinary that it is not useful to use ordinariness as a yardstick. Ealing is not local for Alan and there is no community there which would be meaningful for him. I also accept the evidence of the clinicians, the experts, and not least of Alan’s committed parents, that the prospect of him living a more expansive and fulfilled life following a move is a chimera. It is more likely that it would lead to a deterioration from which he might – or might not – recover. It is not enough to say that ‘the benefits of community living may matter to Alan’ if one cannot show that they will. Facing up to these realities does not in any way diminish or demean Alan, but values and respects him for who he is.

[78]I agree that the prospect of a home for life for Alan is attractive and accept that there is no guarantee that an alternative of the quality now offered would be available if he had to move at some point in the future. Nevertheless, only the closure of SRS could justify the turmoil of a move and as this is not expected in the foreseeable future, there is no reason to anticipate it.

[79]I have been impressed by the commitment to Alan’s welfare of every participant in these proceedings, including Ms Batt, who bore the burden of holding up one side of the argument on her own.

[80]This case illustrates the obvious point that guideline policies cannot be treated as universal solutions, nor should initiatives designed to personalise care and promote choice be applied to the opposite effect. The very existence of SRS, after most of the institutional population had been resettled in the community, is perhaps the exception that proves this rule. These residents are not an anomaly simply because they are among the few remaining recipients of this style of social care. They might better be seen as a good example of the kind of personal planning that lies at the heart of the philosophy of care in the community. Otherwise, an unintended consequence of national policy may be to sacrifice the interests of vulnerable and unusual people like Alan.

Postscript

[81]At a hearing in March 2011, proceedings in relation to ten other residents of SRS were resolved by agreement on the basis that they will remain there for the foreseeable future. Final orders were made in their cases, and in Alan’s.