BAILII [Home] [Databases] [World Law] [Multidatabase Search] [Help] [Feedback]

Jersey Unreported Judgments


You are here: BAILII >> Databases >> Jersey Unreported Judgments >> In the matter of B (Medical) [2020] JRC 153 (03 August 2020)
URL: http://www.bailii.org/je/cases/UR/2020/2020_153.html
Cite as: [2020] JRC 153

[New search] [Context] [Printable version] [Help]


Capacity - application for welfare decision and appointment of a delegate

[2020]JRC153

Royal Court

(Probate and Protection)

3 August 2020

Before     :

Sir William Bailhache, Commissioner and Jurats Ronge and Hughes

 

Between

Minister for Health & Social Services

Applicant

And

B

First Respondent

And

C (the father) and D (the mother)

Second Respondents

Advocate H. J. Heath for the Minister.

Advocate R. C. L. Morley-Kirk for the First Respondent.

Advocate E. L. Wakeling for the Second Respondents.

judgment

the COMMISSIONER:

Introduction

1.        This case concerns an application brought by the Minister in accordance with Article 27(1)(a) of the Capacity and Self-Determination (Jersey) Law 2016 ("the 2016 Law") for a specific health and welfare decision as to where the First Respondent should live.  The Minister has also requested the Court to grant an authorisation under Article 57 of the 2016 Law, authorising the imposition of a significant restriction on the First Respondent's liberty.  The Second Respondents are the parents of the First Respondent.  In this judgment they are described individually as the father and the mother respectively, and together as the parents.  The father has also made an application for his appointment as a delegate under Part 3 of the 2016 Law.

2.        The Court was engaged in making a decision on 14th August 2019 in relation to medical treatment of the First Respondent where the Minister proposed that he should have a percutaneous endoscopic gastrostomy ("PEG") feeding tube fitted.  The parents did not agree to that procedure being done, and after hearing evidence, the Court made the order that the insertion of a PEG was in the best interests of the First Respondent.  In the present case, as on the last occasion, Ms Patricia Winchester has acted as the independent capacity advocate for the First Respondent.

3.        The First Respondent is now aged 30.  As indicated later in this judgment, he moved to a home for people with special needs ("the special needs home") in January 2020 but for convenience, we adopt some of the summary of the factual position from our earlier judgment (In the matter of B (Medical) [2019] JRC 158:-

"1.      The First Respondent is currently an in-patient at the Jersey General Hospital.  He reached his developmental milestones until the age of 2 years old when he developed developmental regression.  He is non-verbal and has a spastic tetraparesis.  He lost his language skills at 6 years old and used sign language until he reached the age of 12.  He has suffered from seizures since the age of 10 and while there was some delay in diagnosis, the recent clinical opinion from the specialist centre in the UK has concluded that his seizures are epileptic.  In 2013 he was diagnosed at Addenbrooke's Hospital with an undefined metabolic disorder.  In 2017 he was admitted to Chalfont Hospital for further investigation where an abnormal EEG confirmed significant cerebral dysfunction.  An MRI also showed disproportionate volume loss affecting the cerebellum. 

2.        In November, 2018, the First Respondent was admitted to the Jersey General Hospital suffering from possible urinary retention, dysphagia, constipation and increased seizure activity.  He was treated with a continuous IV dextrose infusion and a low close protein nasogastric ("NG") feed. 

3.        On 2nd January, 2019, the nasogastric tube came out and a decision was made in consultation with the Second Respondents to have a trial of oral feeding to assess if he would be able to meet his nutritional requirements with a view to discharge home.  In early February 2019 the speech and language therapist expressed the opinion that his nutritional needs were not being met through oral feeding and the NG tube was re-inserted. 

4.        The First Respondent was transferred to the National Hospital for Neurology and Neurosurgery at University College London on 4th March for further assessment.  During his attendance there, his seizure activity was subject to investigation and found to be very frequent.  It was decided as a result to increase his anti-epileptic medication and over the following weeks his seizure activity decreased.  However, during admission to that hospital, he developed sepsis requiring a transfer to ITU."

4.        On 24th April 2019 the First Respondent was transferred back to the Jersey General Hospital, and until the authorisation of the PEG procedure, he received nutrition and hydration both orally and via an NG tube.  Following his recovery from the PEG procedure it became apparent by the autumn of 2019 that he should no longer be in hospital, and the question of where he should live became critical.  The options for consideration were these:-

(i)        A return to the flat which he had previously occupied ("the flat");

(ii)       A new home placement in different accommodation;

(iii)      A residential care home on the island; or

(iv)      A residential care home off island.  The possibility of an off island care placement is not appropriate in the present circumstances and no further attention is given to it.

Process

5.        A best interests meeting took place on 27th September 2019.  It was attended by a number of different professionals who had been concerned in the care of the First Respondent, by Ms Winchester and by lawyers for the parties.  The parents were invited to attend but declined to do so, we think on the basis that their views could be advanced by their lawyer (a colleague of Advocate Wakeling who appeared before us) and because they would find the discussion intimidating and upsetting.  In the light of the meeting which they had attended on 5th August, to which we will refer in more detail later, this attitude was not surprising.  The conclusion of the best interests meeting was that as the occupational therapist considered the flat to be unsuitable and Andium Homes, the States housing provider, had nothing available to meet the First Respondent's needs, the only option was residential care at the special needs home, where there was a place available.  Subsequently, the parents were contacted.  They did not agree that the special needs home was the right place for their son to live, and on 10th December 2019, the Minister made an application for a best interests decision accordingly.  Permission to bring that application was granted on 13th December and directions were given on 18th December for the appointment of a legal representative and independent capacity advocate for the First Respondent, for the filing of witness statements and skeleton arguments and for reporting restrictions.  In addition, the final hearing was fixed for 22nd January with a time estimate of two days, it being noted that if necessary the Court would sit for one further day to determine the matter.

6.        On 22nd January, the Second Respondents applied for an adjournment of the hearing.  This arose because although the Minister's application did not specifically seek restrictions on the contact between the parents and their son, his skeleton argument did seek that relief, and in support of that request, the Minister had filed a document which set out sixty-seven, or thereabouts, points of criticism in respect of the conduct of both parents but especially that of the mother.  This was not in accordance with the timetable which had been set.  It was unfair to the parents to contemplate proceeding at that time, and the application for an adjournment was appropriate.  The First Respondent was then suffering from a respiratory infection, but it was contemplated that he would make a recovery in the short-term, and the Court ordered that when he had recovered, he should move temporarily to the special needs home.  This was very much an interim measure on the basis that if the First Respondent was well enough, he should not be in hospital and there was no other place for him at that time to which he might move.  The Court emphasised that this was an interim decision, and in the meantime other directions were given in relation to:-

(i)        work to be done by the Minister with Andium Homes with a view to establishing what if any other accommodation might be available;

(ii)       fixing a further directions hearing to review the structure of the Minister's applications and the quantum of evidence to be heard; and

(iii)      a direction to the Minister to continue reviewing other options for the First Respondent's residential placement.

7.        On 10th February 2020, the Minister was granted leave to file an amended DWH02 application, to be filed by 4pm on 13th February, solely for the amended application to set out precisely what restrictions on the First Respondent's liberty and on his contact with his parents would be sought.  A DP05 assessment on capacity in respect of contact and care plan were to be filed by 17th February at 4pm with a statement from the First Respondent's care coordinator, Ms Liz Lewry, by 4pm on 17th February as well.  Other directions were given to ensure that the Court was well placed to manage the hearing of the Minister's application, which was fixed for 11th - 13th March.  In particular, there were issues around disclosure and orders were made in that connection that the Minister should disclose all documents relevant to the proceedings by close of business on 4th March.  It later became apparent that the Minister was not able to provide disclosure by the dates ordered and further extensions of time would be necessary, and for unrelated personal reasons, the Court was unable to sit between 11th and 13th March.  Thus in the event, the various applications were adjourned with final hearing dates fixed for 30th June and 1st - 2nd July.

8.        At the final hearing, evidence was heard from Mr Eugene McCarthy, the overall supervisor in the Health and Community Services Department in the present case, Ms Lewry, a Community Nurse and Case Coordinator in respect of the First Respondent, Ms Caroline Gardner, a Support Manager employed by the Health and Community Services Department in relation to care homes including the special needs home, Ms Kerry Bartlett, a Senior Occupational Therapist, Ms Julie Vibert-Jones, also an Occupational Therapist employed by the Minister, Mr Michael Ruane, Head of Property and Asset Management for Andium Homes, Ms Catherine Sheehan (who gave evidence by video link), an independent Occupational Therapist instructed by the Second Respondents, E, daughter of the Second Respondents and sister of the First Respondent, and both parents.  A number of other statements in the Court bundle ought perhaps not to have been in the documents before us, as they were not agreed and the witnesses in question were not available for examination and cross-examination as the case might be.  We have disregarded those documents.  There were, however, a number of other reports such as physiotherapy reports, hospital medical and nursing care plans, community care plans and contact logs which we have received and taken into account.  We have also had the benefit of a site visit both to the special needs home and to the flat.  Finally, there were a number of admissions which the parties were able to agree.

The Evidence

9.        Eugene McCarthy is the Manager from Hospital.  His evidence was that the First Respondent's physical wellbeing has deteriorated.  He cannot do without a wheelchair and is unable to bear his own weight.  In particular, the First Respondent requires support with all his activities for daily living including:-

(i)        Managing risk and safety in relation to his health needs;

(ii)       Monitoring of his epilepsy;

(iii)      Administration of his medication;

(iv)      Supporting his PEG feeding;

(v)       Monitoring his nutritional intake;

(vi)      Montoring his weight;

(vii)     Moving and safe handling;

(viii)    Skin tissue viability;

(ix)      Communication support package;

(x)       Monitoring his emotional wellbeing;

(xi)      Regular access within the community.

10.      The various care plans prepared have dealt with the First Respondent's activities in daily living, epilepsy, diet, continence, health monitoring, communication, safe handling, emotional wellbeing and family contact.

11.      Mr McCarthy gave evidence of the Best Interests meeting on 27 September, the minutes of which were sent in draft to all attendees, many of whom commented, and they were subsequently amended.  Although the document before the Court had a "draft" watermark, we were told that it was accurate.

12.      As far as funding for the First Respondent's care is concerned, Mr McCarthy explained that the First Respondent was in receipt of long-term care financing, but the cost of his support was outside the limits of that scheme.  He had been granted funds from the Individual Placement Panel which sits every two weeks.  There may be reviews depending on the Panel, who look at and if appropriate, approve the payment of extra costs from the Health and Community budget.  We were assured that cost was not a feature in the decision making in this case.  The Panel has indicated that it would pay for whatever the Court was to order.

13.      In making his best interests' decision, Mr McCarthy indicated that he discounted the option of returning to the flat because of the occupational therapy advice.  It was true that the two local experts had only been permitted by the mother to remain in the flat for a relatively short period, but they were senior occupational therapists and had a great deal of experience.  He felt they had sufficient information to reach the conclusions they did.  He told us that he was satisfied that Andium Homes had nothing available to meet the First Respondent's needs.  He was aware that the First Respondent was currently on the Band 6 list, namely those with advanced and special needs.  The Health and Community Services Department also maintain what is known as a red rag list, namely, those who need accommodation within six months.  Mr McCarthy confirmed that if the Court made a best interests decision that the First Respondent should live at the special needs home, his needs would nonetheless be reviewed annually and of course would also be reviewed if any of the nurses at the special needs home so requested.  Mr McCarthy told us that there was a possibility that the special needs home might be decommissioned in the future, but he thought that might be years down the line, if indeed it happened at all.  The potential problem there is that the corridor is slightly narrower than the regulations require.  This was later confirmed by Caroline Gardner, the Team Leader for the special needs home, providing support for the Manager there.  Although the corridors are a couple of inches too narrow, there has apparently been no difficulty at all in managing the First Respondent's movements along the corridor in his wheelchair.  We feel obliged to say that if the only reason for decommissioning the special needs home were to be the fact that the corridor is narrower than the regulations require, the better course might be to consider a change to the regulations, the width of the corridors apparently causing absolutely no difficulty in practice.

14.      Mr McCarthy told us that although other staff members had had difficulties with the mother, he had no issues himself.  That was perhaps slightly surprising given that the mother clearly considered that she had difficulties with him.  Nonetheless, his view was that if the mother was involved as part of the care team, that team would fall apart or that the mother would disengage with the care team, that being his experience of the mother so far.

15.      We can well understand why Mr McCarthy took the view that the flat was not a sensible option.  The occupational therapy report which he had at the time set out a summary of deficiencies:-

(i)        there was inadequate access between the bedroom to be occupied by the First Respondent and the bathroom;

(ii)       the bathroom was in any event unsuitable because it did not contain equipment that would give the First Respondent full body support and the room was too small to meet his needs and that of two carers with a hoist plus or minus a shower trolley;

(iii)      access from the flat door was restrictive and awkward and gaining access to the front hall of the building in one fluid motion with the wheelchair would not be possible;

(iv)      access from the flat door to the back access was more accessible but still not easy and would need to be very well practised in order to be executed without injury to any party involved;

(v)       furthermore the existing equipment at the property was unsuitable, namely the Etac shower commode chair and the transit standard wheelchair, for the reason that the First Respondent was unable to hold any balance in a seated position unsupported.  He has spontaneous movement and full support was needed for his own safety; the window aspect of the property was poor;

(vi)      The First Respondent would be restricted to living in one room and having all his needs met in that one room.

16.      Having been on site, we have been able to assess the property ourselves and we agree that these deficiencies exist.

17.      Mr McCarthy was perhaps less convincing in the evidence he gave in relation to the property arrangements with Andium and we summarise our concerns in that respect when we review the evidence of Mr. Michael Ruane.

18.      Elizabeth Lewry has known the First Respondent for eight years and told us that she had been able to build a good relationship with the mother in that period although more recently it had become difficult as the First Respondent's physical condition deteriorated between 2016 and 2018.  She told us that the First Respondent enjoys physical contact and she has visited him at the special needs home, although not in the presence of his mother.  She is aware that the COVID-19 isolation rules have been difficult for the First Respondent and for the family, but she commented that it was very positive both for the First Respondent and the family that the contact logs do not show much friction between the mother and the staff at the special needs home.

19.      She was cross examined about a number of meetings which she has attended from time to time over the last 15 months or so.  There have been certainly two meetings which have been contentious in these proceedings.

20.      The first was the meeting of 19th April 2019.  The parents appear to be of the view that it was at this early stage that the Health Authorities decided that the First Respondent should go into the special needs home or a similar style of residential accommodation.  Ms Lewry told us that this was not the position.  The discussion on 19th April 2019 - a meeting about which the parents are very suspicious because no minutes have been disclosed by the Minister although the mother asserted in her evidence that she had been shown a copy of those minutes - apparently centred on how to get the First Respondent back to Jersey from hospital in London and what things would need to be put in place to keep him safe.

21.      Ms Lewry told us about her experiences in caring for the First Respondent.  He apparently loves stories and books, and he likes sitting with a woman next to him.  He enjoys being talked to and she finds that she is learning more about him week by week.  There is one particular resident at the special needs home whom he likes.  She said that one can tell that this is his reaction to that resident from his facial expressions.  In her view he has exceeded her expectations in that accommodation.  He has enjoyed music and being around people his own age.  She regarded his emotional needs as crucial.  As far as she was concerned the team at the special needs home have been there a long time and there is a really good commitment from them towards the residents.  This was reflected in the First Respondent's behaviour.  He now attempts to sit up, and he is better in his overall physical and mental health than he was at the beginning of the year.

22.      Ms Caroline Gardner is responsible for the budget at the special needs home and is responsible for giving support to the manager of that accommodation and others.  She has daily contact with the manager and until the COVID-19 restrictions, she attended at the property daily when she would discuss nursing requirements for the residents, the visits by the parents and any day to day issues that came up.  She described how the First Respondent needed rest periods during the day - he needed for example, to lie down for 30 minutes after feeding through the PEG.  She considered that since the First Respondent had arrived at the special needs home in January, she had been able to see a difference in him - he had become familiar with the accommodation, with the people who were there and with the noises which he might experience.  His medication was stable and he had an effective bowel and feeding regime.  He had a proportionate amount of time in his bedroom to allow a full stretch which was otherwise not so easily available in his chair.  The First Respondent's epilepsy will be an ongoing concern but a nurse is in the special needs home 24 hours a day, seven days a week and she thought it could be managed.  Her hope was to see the First Respondent engage more with the community, develop his relations with the staff and have some visits, perhaps to Cheshire Homes for the purposes of swimming or to the beach and so on.  In her view the four hour daily contact available to the parents, who exercised that contact in two hour sessions each, had an impact on the plans for the First Respondent.  There was a window between 11.30 a.m. and 1.00 p.m., but on the basis that he might need to sleep in the early afternoon, there would not be much time for outings if he were to see his parents for four hours daily as was the position prior to the COVID-19 restrictions coming into force.  She might want to see the contact periods reduced to two hours, but she agreed that it would be very good if the parents would join into the activities which the First Respondent enjoyed.

23.      Ms Gardner explained to us that the night time care of the First Respondent is managed by staff who conduct checks on him every 15 minutes; they also have audio devices.  She thought that if the First Respondent was unwell during the day or night before, the staff would check on him more frequently.  In her view he was happy living at the special needs home.  He has had to become familiar with 13 staff members, and so she had taken things slowly, but there had been many positives.  The 30th birthday celebrations with the parents and his sister had been a lovely occasion.

24.      In cross examination by Advocate Morley-Kirk, Ms Gardner told us that the First Respondent did not in her view particularly enjoy watching television but he does have a hand held device that he looks at.  She said that he was intrigued by movements and sounds of two of the other residents and was not distressed by any of them.  In her view he absolutely loved the sensory bath and had been very happy whenever he was in it.  She described how the mother had recently found it very difficult to accept that the First Respondent needed an antibiotic which his general practitioner had prescribed for him.

25.      We have mentioned already the occupational therapy reports in respect of which Ms Bartlett and Ms Vibert-Jones gave their evidence.  The last witness for the Minister was Mr Michael Ruane from Andium Homes.  He was able to confirm that the move to the flat had taken place in 2015, and his notes indicated that the accommodation was regarded as suitable for the First Respondent's needs at that stage.  He described how there are a number of bands within the gateway system.  Andium Homes is responsible for Band 6, and the company is told by the Health and Community Services Department when they have someone whose condition puts them within that band.  The referral of that particular person to Andium normally takes place either through occupational therapists or the Health team, and Andium then try to find suitable accommodation on the basis of the information provided if sufficient to identify what the needs of that particular person might be.  His Band 6 colleagues would be regularly in touch with the Health team.

26.      The First Respondent did not go onto the Band 6 list until February 2020, and Andium had been looking for suitable property since then.  Mr Ruane said that if he had become aware that someone on the Band 6 list is adequately housed, that would certainly lift the pressure on him to find accommodation for that person.  There were twelve people on the Band 6 list at present.

27.      In cross examination, he told us that the First Respondent was off the Band 6 list between 2015 and February 2020, because Andium had not been told that his existing property at the flat was inadequate for his needs.  He also confirmed that a number of new building projects were on hand at any given time, and where a new build was taking place, it was possible to design it to fit the needs which were required.  He agreed that the First Respondent could stay on the Band 6 list even if the Court thought that the special needs home was adequate for his current accommodation.

28.      The flat is due for development in the next five years.  He would expect to move residents around in the period before then but it is sometimes complicated to arrange this and he would have to work with the relevant Health teams.

29.      The Minister then called Ms Catherine Sheehan, which was surprising in as much as she was the Independent Occupational Therapist instructed by the Second Respondents.  However, as there was an agreed Occupational Therapist Report, this caused no difficulty.

30.      Ms Sheehan's specialist area is housing those with complex needs, and in her view, the premises at the flat would be appropriate, if modified, for no longer than 12 months.  Furthermore, she agreed in cross examination that the fact that the bedroom is directly accessed from the entrance hallway of the flats in the block was not ideal, and there was no outside space.  She did not think it would be wise for the mother to be present at the flat as an overnight carer in that property.  She thought that as a short term solution, the flat at least had the advantage of having been the First Respondent's home, but she also agreed that we should be trying to make his life better and there was not much at the flat which would cater for his non-physical needs.

31.      The Expert Occupational Therapists helpfully liaised to agree points of agreement and disagreement in relation to their reports.  The conclusion was that they agreed that the First Respondent could return to his flat on a temporary basis as long as all the recommendations in Ms Sheehan's report were carried out, and that suitable wheelchair accessible accommodation should in the longer term be allocated, thus enabling the First Respondent to access all rooms and outdoor space.  They agreed that the key to the First Respondent's successful discharge home and ongoing support lay in meeting the points raised in Section 22 of Ms Sheehan's report.  This was a reference to the following needs:-

(i)        Clear and regular communication between everyone involved in the First Respondent returning home, and clear roles for all those concerned to be agreed and followed;

(ii)       The different roles and responsibilities which all parties should agree should then be contained within a contract;

(iii)      A number of adaptations were required to the flat.  This probably carried an overall cost of a figure in the region of £10,000;

(iv)      A 24 hour care package with two carers at all times;

(v)       The carers to be trained in safe moving and handling techniques;

(vi)      A weekly programme of activities including time at a day centre to allow for engaging with other people;

(vii)     The parents to be trained in moving and handling techniques;

(viii)    The parents to attend the quality of life activities at set times throughout the week so that the mother could start to build up her own purposeful occupations away from caring for her son;

(ix)      CCTV (with audio) to be installed in the flat with the permission of all parties involved to record care and family and carer interactions.  This was thought by some to be a controversial recommendation, and in particular, there was a question raised as to whether it would be human rights compliant for such a course to be followed.  In the event, it had not been necessary to consider that point any further.

32.      The evidence of the First Respondent's sister was extremely supportive of and loyal to her parents and her brother.  It is clear that all of them have a well-developed sense of family.  E considered that taking the First Respondent into residential care away from the only family he has ever known could not possibly be in his best interest.  In particular, she considered that there would be restricted access to his family in residential care and that also could not possibly be in his best interest.  She did not feel that her brother ought to have to live with strangers when he had parents who cared more about the quality of his life than the quality of their own.

33.      E has not been inside the special needs home, but she did attend there on the First Respondent's 30th birthday.  He was sitting inside and she and her parents were sitting outside in the garden as a result of the COVID-19 restrictions.  It was a good occasion.

34.      She agreed that the flat was small and she thought the Government should provide more space.  He might now be physically better than when he was in hospital, but she could not speculate on whether he is happier.

35.      We heard from the father who considered that his son ought to have his own accommodation with the parents having greater support, and with both parents having access to him at all times.  The father said he was upset that his son was in the special needs home - he was concerned about overall staffing levels, especially overnight.  He was concerned that his son was on occasion subject to restraint in his chair and his said that when he had seen him the previous Friday, the First Respondent had tried to lift himself up, and had been unable to do so because of the belt fastening in his chair.  That was very distressing.

36.      The father has not had Skype contact during the COVID-19 restrictions because he does not feel that is suitable for communicating with his son.  He said that one needs to sit next to him, stroke his hand or his face.

37.      The father had no concerns about the ability of the parents to deal with carers.  There had been no difficulties with carers in the past although he agreed there had been problems with professionals.  He thought that his son would be much happier returning to the flat.  By contrast, he did not regard the special needs home as a homely environment and he disputed the proposition that the First Respondent had formed any type of relationship with the other residents.

38.      The father told us that he had previously taken his son out on outings many times - they had been to the Zoo, but the last time he had been taken there, the First Respondent was walking.  He did not really consider that the First Respondent would benefit much from time spent with other people because he did not think he would recognise them or generally be cognisant of them.

39.      The mother gave evidence along similar lines to that of her husband.  It was absolutely clear from her evidence that, like her husband, she cares deeply about their son.  She has the natural desire of a parent to care for him herself and we think it is fair to say that she resents the attempts by the State to interfere in that care.  She acknowledges that she needs help to look after him, but she feels she should have the responsibility of doing so with assistance.  She does not wish to see him institutionalised.

40.      She clearly understands that there is no other choice at present than the binary choice of the special needs home or the flat.  She told us that she thought that the Minister had made a decision on 19th April 2019 for the First Respondent to go to the special needs home, and that she had been shown a copy of the minutes - and on another occasion parts of those minutes had been read to her.

41.      Looking back on the time when she did care for the First Respondent at the flat, she described the numbers of carers who had worked with her, and in particular, described one of them - Catia - as absolutely wonderful.  She was pleased that Catia is currently working with the First Respondent at the special needs home; but the purpose of her reference to the different carers was to emphasise that she has never had a dispute with carers - it is only with the medical staff in hospital.  The professionals as far she is concerned do not permit her to express a view, and have a "do as we say" attitude towards her.  She agreed that there have been problems sometimes with her relations in the hospital - but she did accept that those working in the States employment were not insensitive and they do care about the First Respondent.  However, they do not go home at night and worry about him in the way that she did.  She was particularly concerned about his overnight care because that is the time when the First Respondent is liable to have a seizure, which might prove fatal.  She took the view that it was not acceptable that he is able to roll out of bed onto a crash mat in the middle of the night if such a seizure took place, notwithstanding that the bed has been lowered almost to floor level in case that should take place.  She said she was able to predict when the First Respondent was about to have a seizure, and she had never missed a seizure previously when she was caring for him.

42.      In her view, the First Respondent is not happy at the special needs home.  She saw him as being very depressed and she has seen how he has declined.  She has been at the special needs home when as she put it, a resident was parked in his chair in front of the television for two hours, although the television was not on.  She agreed that her son liked physical contact, and she said that it was obviously inappropriate that staff at the special needs home should cuddle or kiss him as she used to do - and that he loved that.

43.      Finally, we heard evidence from Ms Winchester, the Independent Capacity Advocate.  She has met the First Respondent over 20 times in the last six months and she saw him last the day before the Hearing giving rise to this judgment.  He gives a limited reaction to other people but she felt that she was able to communicate with him.  He maintains full eye contact with her, he smiles and can glare when he is unhappy.  He clearly likes some staff members more than others.  He likes ladies with blonde hair.  Overall she had thought that he had settled well in the special needs home.  She recalls an occasion when she asked him if people made him laugh.  He apparently then looked at her and laughed.  She saw no signs of depression.  The First Respondent does get tired, but in her view he is as content and happy as he can be.

44.      We have deliberately in this judgment not recounted all the evidence that was put to us about the difficulties in relationships between the parents and the professionals because we do not think it is particularly helpful to dwell on that subject; but we do note that the parents regarded a meeting in August 2019, as being particularly difficult.  They had attended the meeting in the belief that arrangements were being discussed for the First Respondent's release from hospital, an event which they were anticipating with great excitement.  From the perspective of the professionals, it was a planning meeting to discuss what caring arrangements for the First Respondent would be in place when he went home.  There was therefore, a mismatch of expectations, and it is fairly clear that the meeting went extremely badly.  The professionals present, including Ms Winchester considered that the parents reacted with hostility and a rudeness which was intimidating.  She told us that the mother accused those present of "trying to kill my son".  When Advocate Morley-Kirk, also present, attempted to reassure the parents by stating that this was their opportunity to be heard, the mother responded "they are all just sitting there, lying their socks off.  They just lie.  We have nothing to say to you."  The father accused Advocate Morley-Kirk of "trying to accuse us of negligence."

45.      The mother's recollection of the meeting was very different.  She attended with the expectations which we have mentioned, but instead of a discussion aimed at confirming the return home of her son, she faced an interrogation of twelve people which she saw as intimidatory - questioning her ability to care for her son if he went home, and by implication, raising serious questions about whether he would be properly cared for if he went home - and her impression from those questions being raised has in her eyes been justified by subsequent events.

46.      Unfortunately, the meeting in August 2019, occurring as it did at a time of great anxiety for the parents coming shortly after the court hearing when the court had authorised the insertion of the PEG, seems to have hardened the attitudes of both the Minister and his staff and the parents to each other.

47.      In summary, Ms Winchester's view was that the flat was capable of providing some accommodation for the First Respondent, but it would not be suitable.  The mother is not a qualified nurse and cannot give nursing care.  The evidence suggested that she cannot work with people who do not agree with her and although the parental interactions with staff have been good at the special needs home, the experience at the hospital was not at all good.  She confirmed that staff levels at the special needs home have increased, especially to arrange appropriate care for the First Respondent and in her view the physical comparisons between what was available at the special needs home and the flat came down substantially in favour of the former.

Discussion

48.      The first question for us was that of the First Respondent's capacity.  Under Article 3 of the 2016 Law, a person is assumed to have capacity unless it is shown that he lacks it, and a person is not to be treated as unable to make a decision unless practical steps have been taken to enable him to take it, without success.  Article 3 of the 2016 Law also requires that decision made on behalf of a person lacking capacity must be made in his best interests.

49.      Regrettably, the First Respondent's condition is progressive and his condition is unlikely to improve.  All parties agree that he did not have capacity to take a decision as to where he should live.  Form DP05, filed by the Minister on 10th December 2019, referred to the capacity assessment that was carried out prior to the institution of these proceedings.  The First Respondent was shown photographs with a number of options and he was asked to look at the one he wanted - living in a flat or living in a house; living alone or living with other people; living with other people or living with his father.  It was not possible to say with absolute certainty that he understood all the information he was given because he is predominantly non-verbal.  Work on communication with him was ongoing, and it was thought that establishing a consistent response about which one could be confident of its accuracy could still potentially take months and needed to be established using concrete choices.  Accordingly, where he might potentially live was an abstract concept and it was quite unclear as to whether he could assimilate the information necessary in order to make an informed choice. 

50.      The Court is satisfied that, applying the principles set out in Articles 3 to 5 of the 2016 Law, the First Respondent lacks the capacity to make a decision as to where he should live.  Accordingly the decision falls to be taken by the Court, no health and welfare delegate as yet having been appointed, and the Court must do so in the First Respondent's best interests pursuant to Articles 3 and 6 of the 2016 Law in particular.

51.      The parties were also substantially agreed as to the law which we should apply in relation to making a best interests decision.  In this respect, the 2016 Law is substantially modelled on the Mental Capacity Act 2005 in the United Kingdom and in particular, Article 6 of the 2016 Law follows the structure of Section 4 of the 2005 Act.  Accordingly decisions of the courts of England and Wales are of particular interest in relation to our own law.  The decision of the Supreme Court in Aintree Hospitals NHS Foundation Trust v Jones [2014] AC 591 is, as we said in our judgment on 14th August 2019, particularly helpful.  The best interests tests focuses on the patient as an individual rather than on the conduct of the professionals treating him, and it takes into account all the circumstances, both medical and non-medical.  This involves an element of substituted judgment, where the Court is considering what it would do objectively on behalf of the patient, but this is not conclusive - the Court should take into account the past and present wishes and feelings of the patient as an individual and any factors which it is thought he might consider if he were able to do so.  That is specifically required because of the reference both in the 2005 Act and the 2016 Law to the beliefs and values which would be likely to influence his decision if he had capacity - and naturally that requires the Court to consult with carers and family interested in the patient's welfare as to what would be in his best interests and what his own views would have been.  The best interests test goes further than a substituted judgment test because one is required to accept that the preferences of the person concerned are an important component in deciding where the best interests lie.  Overall therefore the test is not an objective assessment, albeit it contains elements of objectivity, but the Court is required to take a step back and look at the welfare of the patient in the widest sense taking into account not just medical factors but social and psychological factors, putting itself in the place of the individual patient and asking what his attitude to the question is or would be likely to be.

52.      As we said in our earlier decision, the views of the family members, particularly those who have cared for him, are extremely important to the best interests decision making process.  They play a crucial role in assisting the Court to understand the individual and what his past wishes and feelings were and what his beliefs and values would be if he now had capacity.

53.      We also accept the proposition set out in the English authorities to the effect that a best interests decision must require that the decision taken is not a foolish one - the statute requires the decision to be a best interests decision and it follows that it is not open to the Court, assuming on the evidence that it is satisfied that the patient if he had capacity would have taken a bad decision, to take that bad decision in his best interests - because it would not be a best interests decision.

54.      All the evidence before us is to the effect that the parents love their son deeply and are motivated by the very best of intentions in the approach which they have taken.  We accept that.  This is not the same as saying that we necessarily think that their solution is the best solution, but it is to say that they are both entitled to require us to give the greatest consideration to their views in deciding what is in his best interests.  Furthermore, to the extent that we have to consider as far as we can what the First Respondent's own views would be, we think it is right to recognise that until a couple of years ago the First Respondent knew no other permanent care than that provided for him by his mother.  In cross-examination, Advocate Wakeling described the First Respondent's life as falling within three periods - the first from birth until late 2018, the second from that point until January 2020, when he went to the special needs home, and the third from January 2020 to date - and we think she was right to do so.  During the first period, the parents had only nine hours support a week.  There is argument as to whether more might have been available, and if so who would pay for it, but this is not material to what we have to consider which is a best interests decision today.  What is perhaps relevant is that for whatever reason there was no substantial care for the First Respondent other than that provided by his mother.  It must follow that if the First Respondent had had capacity during any part of this period, all his experience would suggest that a substantial emphasis should be placed upon his familiarity with the only care he had ever known.  The counterpoint to that is that the nature of his disability is such that it is not clear how much he actually remembers of what has taken place previously.  Our assessment of this position is we recognise less than complete, because we have not received much by way of specialist psychological evidence or indeed evidence from a speech and language therapist.  Despite this however, the First Respondent clearly does remember people and we have no doubt that he does remember his parents, which for the purposes of this case only, because we have not had expert evidence on the point, we assume to be with love and affection.  All the professional evidence before us was to the effect that his continued contact with them both was very much to his advantage and in particular would be good for his emotional and psychological make up.

55.      Furthermore it is clear that both the parents and their daughter have very firm beliefs about the importance of the family, beliefs which we respect and value.  We think that the First Respondent similarly would have such beliefs and would value the importance of family as well, and that would be likely to influence his decision, were he able to make one.

56.      Whereas previously when living at the flat the mother had had substantial responsibility for the First Respondent's care, it was accepted before us that his condition had deteriorated and he was now in need of twenty-four hour nursing care.  It was too much for her and indeed her proposal had been that he should move to the flat, subject to improvements to that accommodation being effected, and that she would have night time care for him only, with full-time care provided by the Minister during the day.  Indeed it seems to us to be appropriate to recognise that the issue of where the First Respondent should live is very closely connected with - perhaps even inseparable from -the issue of who cares for him.  Linked with that question is the question of potential contact restrictions with his parents, but that is only obliquely before the Court in the sense that there is no current application for such restrictions.

57.      With that in mind we now turn to the question of accommodation, given that at present the options are limited to the flat and the special needs home.  In our judgment, the flat is unsuitable for a number of reasons.  First of all, everyone seems to accept that even if it were adapted in respects which have been considered by the occupational therapists, the adaptations would still leave the premises there as suitable on only a very temporary basis - perhaps with a maximum of twelve months.  In the short to medium term, we are told that the premises would be liable to be subject to substantial modifications in any event, and would therefore be out of a range of possible accommodations for the First Respondent for a considerable time.  As a matter of common sense, it does not seem to be economically appropriate to spend a sum perhaps in excess of £10,000 in order to create a temporary upgrade of accommodation that will still only be suitable for a short period.  More importantly, even if adapted, the accommodation is unsuitable.  The First Respondent would be confined to one room only with immediate access from the public hallway.  It would make respecting his privacy difficult if not impossible during toileting.  There would be no bath or shower, yet alone the sensory bath which we are told he enjoys at the special needs home.  He would be isolated from contact with those in a similar position to himself.  If for any reason the accommodation there proved to be unavailable or as unsuitable as we believe it would be, there is no guarantee that there would be space for him either at the special needs home or in similar States or private care accommodation.  In that event, he would have to be taken back to hospital.

58.      In terms of the extent of the accommodation, the fact is that at the special needs home, the First Respondent has not only his bedroom but also access to a quiet sitting room as well as a sitting room where the other residents can join him.  There is an outside space available for his use and enjoyment.  There are hoists which can assist him in moving from his bed to his chair.  As mentioned, there is a sensory bath which he is said to enjoy.  In terms of accommodation, there is in our view no doubt that the special needs home provides a better option and would be the correct current choice. 

59.      Taking the holistic view of the First Respondent's needs as we are enjoined to do, we should however consider more than the physical accommodation; and this is what gives rise to the most difficult aspect of the present case.  The Minister contends that the special needs home provides an all-round better life experience for the First Respondent than he was previously enjoying.  It is a given that his parents are important to him and that he enjoys seeing them; but what the special needs home provides is a social interaction which he cannot experience at the flat.  Ms Lewry told us that the First Respondent loves music and being around people of his own age.  He enjoys physical contact.  According to Ms Gardner, he is intrigued by the movements and sounds of two other residents and is very happy with the sensory bath.  He has had hand and foot massages and indeed enjoys physical contact.  He relates well to the nursing and care staff at the special needs home, although he has definite preferences as to the staff he prefers when it comes to intimate care.  The Minister's position is that he will experience a much more rounded life at the special needs home.  Obviously the COVID-19 pandemic, and the lockdown arrangements which have flowed from it, have caused some difficulties particularly in relation to outings.  However the Minister hopes that in the not too distant future it will be possible to see the First Respondent engage more with the community, with access possibly to swimming at Cheshire Homes, or to the beach, or on other outings.  It is thought that if possible the parents would join the First Respondent on these outings and that, in the round, his life experiences can be as good as they could ever be anywhere.  We agree that attention should be paid to arrange outings for the First Respondent and if the parents do not wish to join him on them, then there should be discussion as to whether the outings should take place but at the expense of time spent in contact sessions.

60.      Inevitably there are some comparisons with the care which he had when living at the flat.  The impression which the Minister conveys is that he had a much more solitary lifestyle then.  The parents do not agree with that.  According to them, the father would take the First Respondent out regularly to the park or on other outings, and there was contact with neighbours including some of the children there who provided younger company for the First Respondent from time to time. 

61.      The parents' position is that the day time carers would have more time for him at the flat than they would at the special needs home because in the former premises there would be only him to care for, whereas at the special needs home there are five residents whose needs have to be addressed at all times.  As far as night time is concerned, the mother considers that she is better able to recognise when the First Respondent is about to suffer a fit than many of the professionals, and that as fitting is more likely at night, it is all the more necessary for her to be present then.  The parents consider that the First Respondent is living life in clinical accommodation at present whereas he should be living in a home.  Their fall-back position is that even if the Court were to consider that accommodation at the flat to be unsatisfactory, it is important that the arrangements for future care of the First Respondent are focused on providing him with a home and not seeing him housed in an institution. 

62.      We do not need to resolve these conflicts for the purposes of the present proceedings.  In our judgment, the special needs home provides better accommodation for the First Respondent at present and there is no other satisfactory alternative.  That is not to say that other accommodation will not come up for consideration in the future.  The First Respondent is currently on what is known as the Band 6 list for homes with Andium Homes and the Minister will ensure that he is not removed from that list.  In our judgment, Andium should monitor the needs of the First Respondent because although the present accommodation has been decided, his needs may change and circumstances may be different in the future.  The Minister suggests that under current policy, the accommodation needs will be reviewed every twelve months.  The parents request us to order the Minister to carry out such a review every three months.  The different timetables for review need to be considered also in relation to the timetable for new accommodation developed by Andium coming online.  The evidence we have heard suggests that a period of up to two years between the time the needs and property are identified and the time when the redesigned property becomes available for occupation by the person in question.  Bearing that timetable in mind, we think that a twelve month review as proposed by the Minister is too long if that were to be the only review which takes place.  However, we are told by the professionals that the First Respondent's needs and the ability of the special needs home to provide for them will be the subject of almost daily review by his carers.  Notwithstanding this, we consider that while it is likely to be true that there will be a daily reassessment of any change in his circumstances, that is not the same thing as a structured review where his needs come up for consideration at the same time as those of the others for whom the Minister has responsibility - according to Mr McCarthy there may be between twelve and fifteen on the Band 6 list needing accommodation at any given time.

63.      Having regard to all these circumstances, we think there should be a flag for review of the First Respondent's position every six months.  He should stay on Andium's Band 6 list and in the Gateway system maintained by occupational therapists at Health and Community Services for the purposes of ensuring that the right accommodation whether provided by Andium Homes or private housing trusts, becomes available.

64.      Time will pass and with it circumstances may change.  The First Respondent's needs have increased in the last two years and they may change again.  Some of the evidence before us suggests that as his carers at the special needs home come to know him better, it may be possible to identify more accurately what his wishes might be and that of course would be an important factor in any future decision taking.  The truth is that with those in the First Respondent's position, there are pluses and minuses with both institutional care and home care - inevitably, with institutional care, there is a risk that from time to time the personal touch will be missing.  The mother gave us examples of an occasion on which, if her evidence is to be accepted, the care provided by the carer for a different resident of the special needs home fell short of that which would be desirable, and without finding as a fact that that took place, we can recognise the real possibility that in a care home situation, those who are employed to provide care do so at a level that falls short of the loving care which can be experienced within a family.  If institutional care is more antiseptic, it is also more professional.  It also generally provides bigger and better equipped premises and an ability for social interaction on a wider scale than is possible in a private home.  These generalised comments may one day need to be applied specifically in relation to the First Respondent.  Today they do not need to be applied, because at present there is in our judgment no real choice as to where he should live.  When the time comes, assuming it does, when other accommodation does become available, the circumstances will need to be considered as they then are; and indeed the parents' views may well have changed by that stage.  What is certainly promising about the present accommodation at the special needs home is that not only does it provide all that the First Respondent physically needs but also it is capable of providing some wide ranging emotional and social nourishment which the First Respondent will need.  In that connection, the evidence of the independent capacity advocate, to which we will return shortly, has been extremely important.

65.      We add this at this stage in relation to the possibility of care being provided by the mother for the First Respondent at night.  The only evidential support for this proposition came from the parents.  Even Ms Sheehan, their own expert occupational therapist, did not think this was a good idea.  The professional evidence was that the contribution of a parent could be distinguished from that of a carer.  If the mother spent her time as a carer, particularly overnight, her relationship with her son would be very different - she would be too tired to make a contribution as his mother.  While of course it is true that parents are responsible for bringing up their children, in most cases that changes - the children learn how to care for themselves and they leave the nest seeking wider experiences from life and indeed they develop different relationships with others and with their own parents.  The First Respondent is not able to do that in the same way, but that is not to say that the essential nature of the parental relationship should remain as though he were still a child.  We can say quite unreservedly that we are enormously impressed by the mother's love and care for her son, and the dedication which she has shown to him over very many years.  That care and dedication perhaps has gone on so long that it has become second nature to her.  During the COVID-19 enforced break from the First Respondent, and the time over the next months where care is being provided by the staff at the special needs home, the mother has had and should have the opportunity for more relaxed and enjoyable time with the First Respondent.  Indeed this may provide an opportunity for the mother to reassess the future relationships.  This is not a question of the parents 'losing' their son to the Minister - the First Respondent will always be their son and will always have need of the love and care which they show for him; but their relationship may yet develop better, as with many parents, when they step back as the children get older and develop a new family relationship.

66.      Providing night time nursing care could be extremely tiring for the mother.  The concern which Ms Winchester expressed was that if the mother was up with her son all night, she could not possibly participate with him during the day and he would miss out.  That remains true wherever the First Respondent were to live, whether in private accommodation or in an institutional care home such as the special needs home; the risk is unintentional emotional neglect, the very reverse of what we know the parents feel for their son.

Restriction of liberty

67.      The Minister asked the Court to authorise the imposition of significant restrictions on the liberty of the First Respondent for a period of up to 12 months in pursuant to Article 57 of the 2016 Law.  This arises, it is said, as a result of the First Respondent being under constant supervision and control and not free to leave his placement.  The restrictions on his liberty would have to be reviewed annually.  The Minister's application goes hand in hand with what is said to be the effect of Article 5 of the European Convention on Human Rights.

68.      Article 57 of the 2016 Law is in these terms:-

"57.    Powers of Court in relation to grant etc. of authorizations

           (1)        Without derogation from any other power conferred on the Court by this Law or any other enactment, or by its inherent jurisdiction, the Court may, if the conditions stated in paragraph (2) are fulfilled, make an order authorizing the imposition of a significant restriction on P's liberty.

           (2)        The conditions mentioned in paragraph (1) are -

                       (a)        that P lacks capacity in relation to giving consent to the arrangements for his or her care or treatment; and                 

                       (b         that it is both necessary in the interests of P's health or safety, and in P's best interests, to impose significant restrictions on P's liberty.

           (3)        An order of the Court under paragraph (1) must state -

                       (a)        P's name;

                       (b)        M's name, and the name of any registered person concerned;

 

                       (c)        the name of any registered provider within the meaning of the Registration of Care (Jersey) Law 2014[7];

                       (d)        the period (of no more than 12 months) during which the order is to have effect;

                       (e)        the nature, extent and duration of the significant restrictions on P's liberty which are permitted to be imposed by the order, and by whom they may be imposed;

                       (f)         any conditions or directions in relation to the imposition of any such significant restriction (in particular, but not limited to, directions as to the frequency of review); and

                       (g)        the full grounds for the Court's decision, with regard in particular to paragraph (2) and sub-paragraphs (d) to (f) of this paragraph.

(4)        In its determinations as to the matters described in paragraph (3)(d) to (f), the Court must have particular regard to the medical evidence available before it.

           (5)        The Court may authorize significant restrictions on P's liberty which differ from any such restrictions as may have been recommended under any other provision of this Part.

           (6)        Nothing in this Article shall be taken to permit the Court to authorize a significant restriction on P's liberty which conflicts or would conflict with a valid advance decision made by P under Part 3.

           (7)        Where the Court considers it is in P's best interests to do so, the Court may authorize a significant restriction which conflicts with a decision of -

                       (a)        a person on whom P has conferred a lasting power of attorney under Part 2; or

 

                       (b)        a delegate appointed by the Court under Part 4.

           (8)        Articles 50, 51, 54, 56 and 60 shall apply with all necessary modifications to an order of the Court under this Article as they apply in relation to a standard authorization."

69.      The submission is that the First Respondent is subject to a significant restriction on his liberty because Articles 38 and 39 of the 2016 Law say so.  They are in these terms:-

"38.    Circumstances permitting significant restriction on liberty

           (1)        If, and only if, one of the criteria in paragraph (2) is fulfilled in respect of P, the manager ("M") of a relevant place in which P is residing may lawfully impose on P a significant restriction which would otherwise amount to a deprivation of P's liberty.

           (2)        The criteria mentioned in paragraph (1) are that, in respect of P -

                       (a)        an urgent authorization has been granted by the Minister under Article 42;

                       (b)        a standard authorization has been granted by the Minister under Article 48;

                       (c)        an order of the Court has been made under Article 57; or

                       (d)        the restriction is necessary to enable life-sustaining treatment to be given, as further provided by Article 59.

           (3)        Where one of the criteria in paragraph (2) is fulfilled, a person doing any act for the purpose of maintaining a significant restriction on P's liberty does not incur any liability, in relation to the act, which would not have been incurred if P had capacity to consent, and had consented, to the act being done.

 

           (4)        Paragraphs (1) and (3) -

                       (a)        do not exclude the civil liability of any person for loss or damage, or the criminal liability of any person, resulting from negligence in doing an act; and

                       (b)        do not authorize a person to do anything except for the purpose of, and in accordance with any conditions of, the authorization or order of the Court (as the case may be) applying in respect of P.

39.      Significant restrictions on liberty

           (1)        A measure listed in paragraph (2) amounts to a significant restriction on P's liberty if it applies to P on a regular basis.

           (2)        The measures mentioned in paragraph (1) are that -

                       (a)        P is not allowed, unaccompanied, to leave the relevant place;

                       (b)        P is unable to leave the relevant place unassisted, by reason of P's physical impairment or mental disorder, and such assistance as it may be reasonably practicable to provide to P for this purpose is not provided;

                       (c)        P's actions are so controlled in the relevant place as to limit P's access to part only of that place;

                       (d)        P's actions are controlled, whether or not in the relevant place, by the application of physical force or of restraint as defined in Article 9(2);

                       (e)        P is subject, whether or not in the relevant place, to continuous supervision;

 

                       (f)         P's social contact, whether or not in the relevant place, with persons other than those caring for him or her in the relevant place, is restricted.

           (3)        A measure applicable to all residents at a relevant place (other than staff employed at the place) which -

                       (a)        is intended to facilitate the proper management of that place; and

                       (b)        does not excessively or unreasonably disadvantage P in particular,

                       shall not be regarded as a significant restriction on P's liberty.

           (4)        For the purposes of paragraph (2)(b), and for the avoidance of doubt -

                       (a)        P is not to be regarded as subject to a significant restriction on liberty where P is wholly incapable of leaving the relevant place because of physical impairment; and

                       (b)        any limit as to the time or duration of any assistance provided to P, which does not excessively or unreasonably disadvantage P, shall not be taken to mean that assistance is not provided.

           (5)        The States may by Regulations amend this Article."

70.      The First Respondent is unable to leave the special needs home unassisted by reason of his physical impairment and/or mental disorder.  Furthermore, he is subject to continuous supervision.  Accordingly, for the purposes of Article 39(2) there is a significant restriction on his liberty.

71.      Thus it is that the Minister argues that an Order is necessary under Article 57 for there might otherwise be contended to be a breach of Article 5 of the European Convention on Human Rights (the "Convention"), which is part of the domestic law of the Island under the Human Rights (Jersey) Law 2000.  Article 5 of the Convention requires that no one is deprived of his liberty save in the cases stipulated in paragraph 5.1 of the Convention, and in accordance with a procedure prescribed by law.  Most of the exceptions to the general statement of principle in Article 5.1 do not apply, as they are concerned with the lawful arrest or detention of a person for non-compliance with the law in one form or another, but the paragraph which might apply is 5.1(e) which in these terms:-

"the lawful detention of persons for the prevention of the spreading of infectious diseases, of persons of unsound mind, alcoholics or drug addicts or vagrants."

72.      Anyone who is the victim of an arrest or detention in contravention of Article 5 has an enforceable right to compensation.  The Minister suggests that although none of the exceptions naturally fit the conditions which apply in this case, the Court ought to treat the First Respondent as falling within the description of "persons of unsound mind" and that therefore we can make an Order for a restriction on his liberty under Article 57 of the 2016 Law without contravening the requirement that the Court, as a public authority, must act in a convention compliant way.  In support of the submission, the Minister relies upon P (by his litigation friend, the official solicitor) v the Cheshire West and Chester Council and another and P&Q v Surrey County Council [2014] UKSC19, a decision of the Supreme Court by a majority of 4 to 3 in respect of two cases to which we now turn.

73.      In the first appeal, P had cerebral palsy and downs syndrome and required 24 hour care.  He was in supervised local authority accommodation.  Intervention was required to cope with his challenging behaviours, including use of restrictive clothing and the insertion of fingers into his mouth to prevent him from eating his continence pads.  The Court of Protection concluded that he was being deprived of his liberty but that was in his best interests.  The Court of Appeal found that he was not deprived of his liberty.

74.      In the conjoined appeal, X and Y were sisters with significant learning difficulties.  X was in foster care with intensive support in most aspects of her daily living.  She would be restrained if she attempted to leave the house.  Y was in residential care and under continuous supervision and control.  The Court of Appeal upheld a decision that the living arrangements were in their best interests and did not amount to a deprivation of their liberty.

75.      The Supreme Court decided that the two cases involved consideration of the criteria for determining whether the living arrangements made for a mentally incapacitated person amounted to a deprivation of their liberty, and by a majority thought that in these two cases they did.  As with the 2016 Law, the deprivation of liberty safeguards in the Mental Capacity Act 2005, were intended to secure professional assessment, independent of the hospital or care home in question, as to whether the person lacked the capacity to make their own decision about accommodation and whether it was in their best interests to be detained.  The majority judgment was given by Baroness Hale.  She considered the Convention position in particular, between paragraphs 45 and 50 of her judgment, starting with the principle described as axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race.  As she put it:-

"far from disability entitling the State to deny such people human rights; rather it places upon the State (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities."

76.      Lady Hale made the point that the fact that living arrangements may be comfortable and life as enjoyable as it could possibly be should make no difference to the end result in relation to Article 5.  As she put it, a gilded cage is still a cage.

77.      The Supreme Court noted that there was no difficulty with the Human Rights Act 1998, because Section 64(5) of the Mental Capacity Act stated that:-

"In this Act, references to a deprivation of a person's liberty have the same meaning as in Article 5(1) of the Human Rights Convention."

78.      The objective was to avoid any violation of the rights identified in R v Bournewood Community and Mental Health NHS Trust ex parte L [1999] 1 AC 458.  The subject in that case was autistic and profoundly mentally disabled.  He had lived in a hospital for many years before being discharged to live with paid foster carers.  One day he became agitated at his day centre, a social worker and doctor were called, and he was sedated and taken to Accident and Emergency where he was examined by a psychiatrist.  The psychiatrist assessed that he needed inpatient treatment, but he then appeared fully compliant and so he was admitted informally.  Although it was intended that he should return to his foster carers as soon as the hospital staff thought it possible, their contact with him was restricted and he would have been prevented from leaving had he tried to do so.  Habeas Corpus and Judicial Review proceedings succeeded in the Court of Appeal, but failed in the House of Lords where the majority held that the hospital had not detained him.  The minority held that it had, and the decision of the minority was upheld when the case went to the European Court of Human Rights as HL v United Kingdom (2004) 40 EHRR 761.  The Court found that there had been violations both of the right to liberty in Article 5(1) of the Convention and of the right of a detained person to speedy access to a court which could order his release if his detention was not lawful.  The Court noted the difference between the machinery in the Mental Health Act which authorised the detention and treatment of compulsory patients and the lack of any such machinery for compliant but incapacitated patients such as HL.  In her judgment in the Cheshire West case, Lady Hale referred to three passages from the European Court Judgment which she described as key:-

"89.  It is not disputed that in order to determine whether there has been a deprivation of liberty, the starting point must be the specific situation of the individual concerned and account must be taken of a whole range of factors arising in a particular case such as the type, duration, effects and manner of implementation of the measure in question.  The distinction between a deprivation of, and restriction upon, liberty is merely one of degree or intensity and not one of nature or substance.

90 ...... the majority of the House of Lords specifically distinguished actual restraint of a person (which would amount to false imprisonment) and restraint which was conditional upon his seeking to leave (which would not constitute false imprisonment).  The Court does not consider such a distinction to be of central importance under the Convention.  Nor, for the same reason, can the Court accept as determinative the fact ..... that the regime applied to the applicant (as a compliant incapacitated patient) did not materially differ from that applied to a person who had the capacity to consent to hospital treatment, neither objecting to their admission to hospital.  The Court recalls that the right to liberty is too important in a democratic society for a person to lose the benefit of convention protection for the single reason that he may have given himself up to be taken into detention, especially when it is not disputed that that person is legally incapable of consenting to, or disagreeing with, the proposed action.

91 ...... the court considers the key factor in the present case to be that the healthcare professionals treating and managing the applicant, exercised complete and effective control over his care and movements from the moment he presented acute behavioural problems on 22 July 1997, to the date he was compulsorily detained on 29 October 1997.....

Accordingly, the concrete situation was that the applicant was under continuous supervision and control and was not free to leave.  Any suggestion to the contrary was, in the Court's view, fairly described by Lord Steayn as 'stretching credulity to breaking point' and as a 'fairy tale'."

79.      Pausing there for a moment, it is clear that the question as to whether there has been a deprivation of liberty requires the specific situation of the individual concerned to be analysed, and account taken of a whole range of factors in the particular case.

80.      Referring to the position in the United Kingdom, Baroness Hale then went on to say that it was necessary for the legislature to introduce some machinery for the many thousands of mentally incapacitated people who were regularly deprived of their liberty in hospitals, care homes and elsewhere.  Having described the different pieces of legislation concerned, she said this:-

"9.    The safeguards have the appearance of bewildering complexity, much greater than that in the comparable provisions for detaining mental patients in hospital under the Mental Health Act; but their essence is to secure professional assessment, by people independent of the hospital or care home in question, of (a) whether the person concerned lacks the capacity to make his own decision about whether to be accommodated in the hospital or care home for the purpose of care or treatment.....   and (b) whether it is in his best interests to be detained. ......  The procedures are administrative, but the authorisation can be challenged in the Court of Protection under section 21A [of the Mental Health Act].

10.     There have been far fewer authorisations under Schedule A1 [of the Mental Health Act] than was predicted before the amendments came into force......  There have also been very few cases coming before the Court of Protection seeking authority to deprive someone of his liberty in a setting other than a hospital or care home ......  It would not be at all surprising if those arranging for the care of people with severe learning disabilities were reluctant to see those arrangements, made in what they think are the best interests of the people concerned, as also depriving them of their liberty.  As with detention under the Mental Health Act, they may worry that it carries a stigma.  They may also bulk at the bureaucracy of the procedures and the time they take.  They may even see the procedures as a return to the bad old days before the Mental Health Act 1959, when all mental patients were seen as prisoners rather than patients or residents like any others......"

81.      Baroness Hale went on to consider what amounts to a deprivation of liberty and noted that there was no Strasburg authority which concerned the type of placements with which the Supreme Court was dealing in the cases of P and P&Q.  She referred to a decision of the Grand Court in Stanev v Bulgaria [2012] 55 EHRR 46, which concerned the placement of a mentally disabled man in a care home rather than a hospital.  In that case, the Court said this:-

"115.    The Court reiterates that the difference between deprivation of liberty and restrictions on liberty of movement, the latter being governed by Article 2 of Protocol No. 4, is merely one of degree or intensity, and not one of nature or substance.  Although the process of classification into one or other of these categories sometimes proves to be no easy task in that some borderline cases are a matter of pure opinion, the Court cannot avoid making the selection upon which the applicability or inapplicability of Article 5 depends.  In order to determine whether someone has been deprived of his liberty, the starting point must be his concrete situation and account must be taken of a whole range of criteria such as the type, duration, effects and manner of implementation of the measures in question."

82.      In Guzzardi v Italy (1980) 3 EHRR 333, Guzzardi was a case of internal exile, where a suspected mafioso was confined to a small area on an Island with various other restrictions designed to prevent his engaging in mafia activities.  This was held to deprive him of his liberty. 

83.      In Ashingdane v United Kingdom (1985) 7 EHRR 528, it was accepted that a compulsory patient was deprived of his liberty in the hospital where he was detained irrespective of the openness or otherwise of the conditions there.  Accordingly, he might be subject to a deprivation of liberty in the circumstances which the Grand Court in Stanev v Bulgaria referred to in Paragraph 116 of its judgment:-

"In the context of deprivation of liberty on mental health grounds, the Court has held that a person could be regarded as having been "detained" even during a period when he was in an open hospital ward with regular unescorted access to the unsecured hospital grounds and the possibility of unescorted leave outside the hospital."

84.      As Baroness Hale said, the Supreme Court was considering circumstances which the Strasburg Court had not yet had to consider, namely, a case where:-

(i)        a person who lacked both legal and factual capacity to decide upon his or her own placement had not objected to it;

(ii)       there was a placement, not in a hospital or social care home but in a small group or domestic setting which was as close as possible to "normal" home life; and

(iii)      the initial authorisation of that placement had been by a Court as being in the best interests of the person concerned.

85.      The issue was whether that authorisation could continue indefinitely or whether there must be some periodic independent check upon whether the placements made are in the best interests of the people concerned.

86.      Addressing the question of what was the essential characteristics of a deprivation of liberty, Baroness Hale said that there were three components:-

(i)        the objective component of confinement in a particular restricted place for a non-negligible length of time;

(ii)       the subjective component of lack of valid consent; and

(iii)      the attribution of responsibility to the State.

87.      As is clear from the Judgment, the Supreme Court was dealing only with the first of these characteristics - the objective component of whether there was confinement in a particular restricted place for a non-negligible length of time.  The other components were not in issue.

88.      In the present case there is no doubt as to second component - the lack of valid consent.  The First Respondent is not able to give a valid consent and there is no reasonable prospect of his doing so in the foreseeable future.

89.      The third component is that of attribution of responsibility to the State, which can only arise on the facts of this case in the context of the Court, as an organ of the State, making a decision in the best interests of the First Respondent.

90.      We start first with the objective component of confinement in a particular restricted place for a non-negligible length of time.  The argument of the Minister is that there is objectively such a confinement because Articles 38 and 39 of the 2016 Law say so.  In our judgment, this does not necessarily follow.  These Articles may have been drafted not with the Convention directly in mind but as part of a framework for establishing a regular review of the circumstances of people in this situation.  The construction of Articles 38 and 39 must be approached in the context of Part 5 of the 2016 Law as whole.

91.      The First Respondent is unfortunately not able to get up from his bed and leave the special needs home.  It would be wonderful if he were to wake up one day and find himself able to do so - but he cannot and there is no reason to think that that will change.  Equally, the Manager of the special needs home cannot be expected to provide assistance to the First Respondent to leave the special needs home at all times, because the First Respondent is not the only resident at the special needs home and there may be other calls upon the time of the nursing and care staff involved.  Article 39(2)(b) would be engaged with the consequence that the Manager would need authorisation from the Minister if one took the view that it was reasonably practicable to provide the First Respondent with assistance to leave at most times during the day despite the constraints of staff or his own needs.  For the most part, we do not think that it is likely that any authorisation needs to be given on these grounds - because the measure - not providing assistance to leave the special needs home - only requires a standard authorisation if it would be reasonably practicable to provide it and it is not provided.  The granting of a standard authorisation by the Minister seems to us to be designed to ensure that no argument could be raised in relation to the reasonably practicable defence which would be volunteered if the Minister were to be criticised.  That this is the correct approach seems to us to be justified by Article 39(3) and (4) - staff constraints which apply to the care available to all the residents at the relevant place fall within paragraph (3) and do not result in significant restrictions on the First Respondent's liberty; and in particular for the purposes of leaving the special needs home unassisted, Article 39(4) provides, for the avoidance of doubt, that a resident is not to be regarded as subject to a significant restriction on liberty if he is wholly incapable of leaving the relevant place because of physical impairment and limits as to the time or duration of assistance provided to him do not excessively or unreasonably disadvantage him.

92.      We apply the Convention jurisprudence distinction between deprivation and restriction of liberty, and look at all the factors involved to decide if there has been a deprivation; because that is what determines the applicability of Article 5 of the Convention.  We also are reluctant to reach the conclusion that Articles 38 and 39 mean that we should treat someone who is physically incapacitated such that he is unable to leave a relevant place such as the special needs home are subject to a significant restriction on his liberty as a result of any activity by the State.  The objective position is that the First Respondent is unable to leave the special needs home because of his physical impairment, but that does not amount to a significant restriction on his liberty imposed by the State.  As a matter of law, in the hypothetical situation where he woke up with physical and mental capacity, there would be nothing to prevent him from doing so, and in practice we do not think any impediment would be put in his way by staff members.

93.      Article 39(2)(e), is said to be engaged because the First Respondent is subject to continuous supervision.  However, it is material to note that the supervision is not supervision intended to restrict his liberty, but supervision intended to ensure his wellbeing.  Continuous supervision in the context of this sub paragraph is not in our judgement about supervision for safety purposes but is instead about intrusive supervision which would amount to a breach of the patient's right to respect for private and family life.  It would, for example, require a Ministerial Authorisation if visits to the First Respondent by his mother were required by the manager of the special needs home to be supervised by staff members.

94.      Leaving aside the question of urgent authorisations by the Minister, which are not likely in the present case because it should reasonably be possible to identify when any authorisations will be necessary, the 2016 Law provides for a process by which any standard authorisations by the Minister should be granted under Article 48.  Once granted, such authorisations may last for up to 12 months, and if it is necessary to renew those arrangement, then on following the proper process that can be done.  In particular, the process involves a report to the Minister in accordance with Articles 44 and 45, and a review of the proposal by the Independent Capacity Advocate.  A further review by the Mental Health Review Tribunal under Part 7 of the Mental Health (Jersey) Law 2016, is then possible under Article 55 of the 2016 Law.

95.      In our judgment it is not necessary to review all the circumstances in which the powers of the Court under Article 57 to make a similar Order authorising the imposition of a significant restriction on the liberty of the patient are engaged.  Article 57 is permissive and not mandatory.  It is sufficient in this case for us to say that we think the remaining provisions of the Law are adequate to ensure there is first of all the ability in the Minister to authorise the manager to take relevant steps which might amount to the imposition of a significant restriction on the First Respondent's liberty, and secondly, to provide such safeguards and protection for the First Respondent and indeed the parents if the Minister should choose to do so.  There is a further protection available through the appointment of a delegate for the First Respondent, which is the matter to which we will shortly turn.

96.      It is also enough for us to say that we do not consider that there is any breach of Article 5 of the Convention engaged by these arrangements.  The Court is not authorising any restrictions on the liberty of the First Respondent.  It is simply making a decision that it is in his best interests for him to reside at the special needs home.  No restrictions are automatically in place because he resides there - the restrictions come into force as a result of his own personal circumstances and these would apply whether he had done so by agreement of all concerned or whether this Court had made a best interests decision.  They do not therefore come about as a result of either an Order of the Court or a decision of the Manager of the special needs home.  If there are to be any restrictions arising from the actions of that Manager, then the standard authorisation of the Minister is available, with the statutory protections which that provides.  Accordingly there is no breach of the Convention in our not making an Order under Article 57.

97.      We now turn to the question of the appointment of a Delegate.

The Father's Application for Appointment

98.      The Minister's position is that there is no need for any health and welfare delegate to be appointed for the First Respondent.  The father has made the application for his own appointment as a delegate, and there is no objection from any party to the appointment of the father as a property and affairs delegate.  We note from Article 24(4) of the 2016 Law, that if the Court resolves to make an Order appointing a delegate, it may do so on such terms as it considers are in P's best interests.  In particular, under paragraph (5) the Court is able to make further Orders, give such directions and confer such powers or impose such duties as it considers necessary or expedient.

99.      Article 27(1) provides that the powers that might be exercised by the Court or a delegate in relation to health and welfare include:-

(i)        deciding where P is to live;

(ii)       deciding what contact if any, P is to have with specified persons; and

(iii)      giving or refusing consent to the carrying out or continuation of treatment by a person providing healthcare.

100.   Article 27(2)(a) concerns some powers which a delegate is not able to exercise - prohibiting a named person from having contact with the patient, directing a person providing healthcare for a patient to allow a different person to take over that responsibility or refusing consent to life sustaining treatment.  Only the Court can make such Orders.

101.   The combination of these Articles enables the Court to impose conditions on the appointment of a delegate which restrict what would otherwise be the delegate's powers.  This already occurs on a routine basis in relation to the appointment of property delegates where the Court exercises its discretion on the appointment of a Property and Affairs delegate to prohibit dealings in real estate in Jersey by the delegate on behalf of P without the consent of the Court.  We are satisfied that we have jurisdiction to appoint a delegate and impose restrictions on the extent of the delegate's powers.

102.   The father was asked why he wished to be appointed as a delegate.  He told us that he would not expect to veto medication which the professionals thought was in the First Respondent's interest, but he reserved the right to ask for a second opinion if necessary.  He would not seek as delegate to overrule medical advice but he noted that the First Respondent had been the subject of many medical opinions over the years which often differed from the previous medical opinion which had been obtained.  Pressed on what he wanted to achieve, he said that he wanted to ensure, if the First Respondent was seriously unwell, that the authorities would not "turn him off".  He wanted to be able to say that he wanted to save his son.  He also thought it would be appropriate that as delegate he could decide where his son lived.  He would use his powers as delegate to do what was necessary in his son's best interests.

103.   The other introductory comment we make at this stage is that in her evidence, Ms Winchester told us that if the Court were to appoint a Health and Welfare delegate, her understanding was that her role as Independent Capacity Advocate would end.  In our judgment, whatever may be the position in that respect if the terms of appointment of the delegate are silent, the status of the Independent Capacity Advocate would not end if the Act of Court appointing the delegate expressly preserves the jurisdiction of the Independent Capacity Advocate to act.

104.   In this case we see a number of advantages in the appointment of the father as delegate.  First of all, as submitted by Advocate Wakeling, it gives a formal status to him in relation to consultations by the Minister - a focal point for proposed actions in the everyday care of the First Respondent.  Secondly, while major decisions such as whether to "turn him off" as the father put it, would be the subject of consultation in any event, we can see that conferring the status of delegate on the father would enable him raise issues of a different nature but with third parties where otherwise he might not be able to do so.  He would, for example, be able to liaise directly with Andium Homes as to the maintenance of the First Respondent on the Band 6 list, and ensure that there was a routine re-examination by Andium of what they are able to provide by way of accommodation in the forthcoming months.  In making that liaison, he would undoubtedly need to cooperate also with the Minister; but his appointment as delegate enables him to be satisfied that the door is open to him for such discussions.  We think that would be helpful.

105.   At the same time, it would be wrong of us to not to note that, without attributing blame for them, there have been difficulties during the second period when the First Respondent was in hospital over the medication provided or sought to be provided and over the care of the First Respondent, those difficulties particularly arising in relation to the mother, but in part, the father as well.  Our hope is that with the First Respondent settling at the special needs home, such disagreements will become less frequent and indeed disappear altogether and that in any event the appointment of the father as delegate may enable such disagreements to be dealt with expeditiously and without generating the heat on both sides which the disagreements seem to have generated in the past.

106.   We note that the disagreements in relation to medical treatment have often arisen because the mother has disagreed with the professional advice.  On some occasions no doubt she has been right to express reservations about it and question it.  We anticipate that this will continue in the short term, but that the father will not be able unilaterally to overrule that advice. That is one reason why the Independent Capacity Advocate will remain in post notwithstanding the appointment of a delegate.

107.   The present application originates with an application for a best interests decision as to where the First Respondent should live.  The parents have disagreed with the Minister in that respect.  It is obvious that the father should not be in a position of being able to take a decision as to where the First Respondent should live in the future, because the Court has resolved that issue.  Any Order appointing the father as the delegate will contain the necessary restriction on his power in that respect.

108.   Similarly, the disagreements with the providers of healthcare mean that we must be cautious about the father's authority as a delegate to prohibit any named person from having contact with his son, or his powers to refuse consent to the carrying out or continuation of treatment by anyone providing healthcare for him.  Again, this will be reflected in an appropriate restriction contained in the Order appointing the father as the delegate.  The nature of the restrictions will be such that any disagreement between the Minister and the father will be referred forthwith to the Independent Capacity Advocate.  If as a result of her engagement the disagreement between the father and the Minister is mediated and resolved, all well and good.  If it is not so successful, the matter can be referred to Court for a best interests decision.  This may sound cumbersome in theory, but we do not anticipate it will be cumbersome in practice.  In our judgement this is the best way of negotiating successfully a way to re-establish trust between the Minister and the parents, which is necessary because not only is it absent at the moment, but also because we are satisfied both the Minister and the parents have the best interests of the First Respondent at heart and they both need to accept the good intentions of the other. 

109.   In her evidence, the mother contended that Ms Winchester was not independent.  We have seen nothing that would suggest that is so.  We think the mother's conclusions about the lack of independence flowed from Ms Winchester's acceptance that what the Minister was proposing was in fact the right course of action for the First Respondent.  We think she was right, as is apparent from this judgment; but we are independent in reaching that conclusion, and we see no reason why she should not be thought to be independent as well.  Agreement with another person does not denote lack of independence.

110.   The form of appointment of delegate is annexed to this Judgment in a schedule. 

111.   For these reasons, the Court makes the best interests decision that it is currently in the best interests of the First Respondent to reside at the special needs home, that no order is necessary or appropriate under Article 57, and that, upon taking the prescribed oath, the father be appointed as delegate for the First Respondent on the terms set out in the Schedule to this Judgment.  The Independent Capacity Advocate shall retain her status as such until further order of the Court.

112.   SCHEDULE

113.   The father is appointed as both health and welfare and property and affairs delegate for the First Respondent with all the powers of a delegate under the Capacity and Self Determination (Jersey) Law 2016 save that:-

(i)        he may not, as delegate, without having the consent of the Independent Capacity Advocate:-

(a)       make a decision as to where the First Respondent should live; and

(b)       decide to refuse the First Respondent contact with any staff at the special needs home or such professional and medical staff as the manager of the special needs home from time to time considers necessary in the First Respondent's best interests; and

(ii)       without prejudice to all the powers of the Royal Court under Article 24 of the 2016 Law, this appointment shall terminate 18 months from the date of appointment unless renewed by the court on the application of either the father or the Independent Capacity Advocate.

(iii)      No transactions in Jersey real estate may take place without the approval of the Court.

Authorities

Capacity and Self-Determination (Jersey) Law 2016. 

In the matter of B (Medical) [2019] JRC 158. 

Aintree Hospitals NHS Foundation Trust v Jones [2014] AC 591. 

P (by his litigation friend, the official solicitor) v the Cheshire West and Chester Council and another and P&Q v Surrey County Council [2014] UKSC19. 

Human Rights (Jersey) Law 2000

R v Bournewood Community and Mental Health NHS Trust ex parte L [1999] 1 AC 458. 

HL v United Kingdom (2004) 40 EHRR 761. 

Stanev v Bulgaria [2012] 55 EHRR 46. 

Guzzardi v Italy (1980) 3 EHRR 333. 

Ashingdane v United Kingdom (1985) 7 EHRR 528. 


Page Last Updated: 08 Oct 2020


BAILII: Copyright Policy | Disclaimers | Privacy Policy | Feedback | Donate to BAILII
URL: http://www.bailii.org/je/cases/UR/2020/2020_153.html