W, R (on the application of) v Lincolnshire County Council

KENNETH PARKER QC: This is an application for judicial review brought by Z against the continuing decision of the Lincolnshire County Council ("the Council"), which Z contends, through her mother and litigation friend AW, is failing to provide services and a care plan that would meet Z's assessed needs.

Z has just turned 17 years of age. Tragically, she suffers from Sanfilippo syndrome, an extremely rare condition that was in the past compared to a form of Alzheimer's disease and to juvenile dementia. It is a degenerative and life limiting illness.

Sanfilippo syndrome occurs in the following way. Mucopolysaccharides are long chains of sugar molecules used in the building of bones, cartilage, tendons and other body tissues. In the course of normal life, there is a continuous recycling process of building new mucopolysaccharides and breaking down old ones through the action of enzymes. Children suffering from Sanfilippo syndrome are missing an enzyme necessary to cut up the used mucopolysaccharides which therefore remain in the cellular lysosomes disrupting all functioning and causing progressive damage. It is an autosomal recessive disease. Each parent must carry the same defective gene and each must pass the same gene to the child. There is no known cure for the condition.

The disease is often described as a triphasic disorder because it tends to progress through three main stages. The disease will affect children differently and its progress will be much faster in some cases than in others. Change will usually be very gradual and therefore easier to adjust to. However, some changes may occur quickly and be followed by a period of delay before further changes occur.

Z is presently in the second stage of the condition. This stage is characterised by extremely active, restless and often very challenging behaviour. Some children sleep very little at night. Many will be into everything and will often chew hands, clothes or anything within reach. Language and understanding will gradually be lost. Some children never become toilet trained and those who do will eventually lose this ability. Z manifests many of these symptoms. Her behaviour is very challenging, with abrupt mood swings and aggressive conduct, such as biting, hitting and kicking, towards adult carers. Such mood swings and aggression are often, but not exclusively, associated with transitions in the course of daily life, such transitions constituting what are called in the evidence "pressure points". This aggression may no doubt tend to be intimidating because Z, although a child, is five foot four inches tall and 11 stone in weight.

Z is somewhat different from many children of her age suffering from Sanfilippo syndrome because she has not yet moved to the third stage of this illness. In the third and final stage of the disease, children begin to slow down. They become unsteady on their feet, tending to fall frequently as they walk or run. Eventually they lose the ability to walk. Life for the carers may become more peaceful in some ways but parents will face the physically tiring task of caring for an immobile child, teenager or adult.

Z lives with her mother, AW. When the proceedings began, her mother was in effect her single carer. She does have some family support but this is limited for various reasons. Z's father is not involved in her day-to-day care, although he does maintain some contact and provides some sporadic financial support. The grandparents, Mr and Mrs W, appear to be within reach and there is evidence that from time to time they help out as best they can. However, this couple already have living with them Z's brother Christopher, who is 13 and is himself disabled, having special education needs, and Z's cousin Kyle, so it would in my view be unreasonable to count upon the grandparents as mainstream carers for Z.

AW is a young woman in her 30s. As a result of her caring role for Z, she has had in recent times no social life and has had difficulty in sustaining such part time employment as she has managed to obtain and that is consistent with her responsibilities for Z.

To a large extent the factual background to these proceedings is not in dispute and I need not rehearse the earlier history. I can take up events in November 2003, when AW made a complaint under the Council's social services complaints procedure concerning the care provided for Z. In the first quarter of 2005, the independent investigator, Mr John Charles, completed his report, upholding many of the complaints made and making the following recommendations. I quote from paragraph 19.3 to 19.5 of that report, when Mr Charles says:

Following these recommendations, the Children with Disability Team ("the CWDT") commissioned Ms Meadowcroft to undertake an independent Core Assessment of Z. The Core Assessment was conducted in June and July 2005 and was sent to the interested parties on 18th August 2005. It is plain that the assessment as such was a generally thorough and professional study. As well as carrying out an assessment of Z's needs, which was the task entrusted to her following the recommendations of the independent investigator, Ms Meadowcroft also offered her opinion as to how best those needs should be met. In Ms Meadowcroft's view, a minimum of six support workers would need to be employed who had previous experience of working with people who presented challenging behaviour. The purpose of employing six workers was that two support workers should be able to work with Z day and night out of school hours, effectively a round the clock support service. The role of the support workers would be, and I quote from Ms Meadowcroft's report:

Toward the end of November 2005, Fran Arnold, service manager with the CWDT, wrote to Ms Meadowcroft asking her to clarify certain aspects of her report. Ms Meadowcroft responded at length in a letter dated 9th September 2005. Specifically as regards the proposed care plan, Ms Meadowcroft replied that:

Ms Meadowcroft, in her reply, also gave reasons why she believed that AW should cease to be primary carer for Z as follows:

Ms Meadowcroft also clarified why she believed that a minimum of six support workers were required, referring to the hours that would need to be covered: that is non-school hours from 3.30pm to 8.30am during the week and 24 hours on Saturday and Sunday and to the fact that, at any one time, two of the support workers would be taking a day off.

In accordance with the recommendations of the independent investigator quoted above, a multi-disciplinary meeting to determine how best to meet and fund the care plan took place on 17th February 2006. Among others, Ms Meadowcroft attended the meeting. Ms Sophie Denham, the Senior Advocacy Support Officer of the MPS, submitted a report for the meeting in which she said that in order to meet Z's needs any care provided should be on a two-to-one basis in order to keep Z safe, to minimise risk to carers and to prevent the need for AW to intervene and have the full force of Z's aggressive behaviour.

According to the minutes of the meeting, there was extensive discussion at the meeting about Z's needs. There was also substantial discussion concerning the nature and extent of support needed to meet those needs. Mr Jon Hird, a senior practitioner in the CWDT, suggested that there should be a gradual introduction of services with a review in three months' time. He thought there were two key issues. First, carers had to be trained specifically for the task under expert guidance. Secondly, any plan had to be sensitive to the relationship between Z and her mother. He believed that that relationship was very close and intense and, when in the setting of the home, they had been separated in the past, Z had continually asked where her mother was. Mr Hird had in mind support centred on the home in terms of key trigger points: that is mornings and bedtime routines. Notwithstanding the view of the MPS, Mr Hird believed that "care in the home is about roles and responsibility and he would not want to take away the parental role within the home". In response to AW's observation that such an arrangement had not worked well in the past, Mr Hird is recorded as saying that the reason was that the carers had not been given the proper training and that a proper plan setting out roles and expectations had not been in place.

Following the meeting of 17th February 2006, the Council drew up a care plan which was provided to Mrs W on 31st March 2006. The contents of the care plan are reviewed on a regular basis. The first review meeting took place on 24th May 2006. Following that meeting, a revised version of the care plan was produced. The next review meeting is scheduled for 6th September 2006. The essence of the current care plan, which is the subject of challenge in these proceedings, is that 21 hours of personal care should be provided to Z in her home each week, in addition to eight hours of support each week to enable her to undertake activities outside school and that respite care should be available, either in her home or, as has been the case in the past, in a residential setting. The provision of personal care is targeted at times of the day that are pressure points, such as mornings between 7.00 and 8.30am, when AW requires help in getting Z out of bed, bathed, breakfasted and off to school or daytime leisure activity and, in the evenings, between 8.30 and 10.00pm, when she requires support to get Z prepared for bed.

I can take this quite shortly, because there is no disagreement between the parties as to the applicable legal principles. Z is a disabled child within the meaning of section 17(11) of the Children Act 1989 and is therefore a child in need within the meaning of section 17(10) of that Act. By virtue of her disability, she also falls within the category of persons protected by section 29 of the National Assistance Act 1948 and therefore, by virtue of section 28A of the Chronically Sick and Disabled Persons Act 1970, is within section 2 of that Act.

It is common ground that section 2 involves three steps. First, the Council must assess the individual needs of the child. That has been done in this case as a result of Ms Meadowcroft's report. The second step is that, taking account of those assessed needs, the Council must be satisfied that it is necessary to make arrangements to meet those needs. Thirdly, if the Council is satisfied that it is necessary to make arrangements to meet those needs, then the Council is under a duty to make those arrangements; see for this duty Lord Lloyd in R v Gloucestershire County Council ex p Barry [1997] AC 584 at pages 597 to 598.

In this case the dispute centres upon the second step. The Council has satisfied itself that it is necessary to make certain arrangements to meet Z's assessed needs (I have already described the care plan that the Council has put forward) and is satisfied that those arrangements are at the present time sufficient. However, counsel for Z, Ms Alison Gerry, who ably argued her case before me, contends, first, that no reasonable council could have been satisfied that those arrangements were sufficient and, secondly, that, in reaching the conclusion that they were sufficient, the Council infringed Z's rights under Article 8 of the European Convention on Human Rights ("the ECHR").

The legal challenge, therefore, rests upon Wednesbury unreasonableness and infringement of Article 8 rights. However, the actual issues are quite specific and narrow. In effect, Ms Gerry contends that the Council could not rationally, and, in a Convention context, lawfully, reject the Care Plan recommendation made by Ms Meadowcroft. That, in turns, breaks down into two sub-issues because, as explained in the introductory part of this judgment, the Council disagree with Ms Meadowcroft on two important matters. First, the Council concluded, contrary to Ms Meadowcroft, that AW should remain a primary carer for Z, albeit with support arranged by the Council, and, secondly, that the additional carer provided by way of support would be present only at certain specific times. Ms Meadowcroft, it will be remembered, recommended that there should be two carers present around the clock. Under the council's arrangements there would plainly be times when AW would be the only carer present.

As to the first issue, Ms Gerry naturally relies on the reasons set out in Ms Meadowcroft's letter of 9th December 2005, to which I have earlier referred. Ms Gerry contends that the Council had no rational basis for rejecting Ms Meadowcroft's recommendation on this point.

In these proceedings, Mr Hird, whom I have already mentioned, made a witness statement and, at paragraph 26, states the reasons for the Council's conclusion that, on the material presently before it, AW should remain a primary carer for Z, and he says at that paragraph:

Mr Hird is an experienced social worker. From his witness statement and the evidence generally, it is clear that he has given very careful consideration since he assumed responsibility for the case in January 2006 to the question, among others, of whether AW should continue in her role as a primary carer for Z. At the meeting of 17th February 2006, he listened to the views of others involved in this case on the relevant question and, as I have explained, adumbrated his preliminary view on the question, which was open to discussion, and his reasons for reaching that view. It seems to me that, sitting in this court, lacking the expertise of Mr Hird, and not having his accumulated experience, I must be somewhat cautious before I conclude that his considered opinion lacked a rational basis. It seems to me, however, this his opinion is plainly not irrational or perverse.

Because of the unique bond between mother and child, the mother is generally and appropriately seen as the most natural and obvious carer for the child, particularly for assisting the child in relation to its intimate needs and for comforting the child at times of serious distress. It seems to me, and this is what Mr Hird of course concluded in this case, that that bond is likely to be all the more close and the primary role of the mother is likely to be all the more important where the child is disabled, as, tragically, is the position of Z. In my view, the most compelling reasons would need to be shown before, in these circumstances, the mother was removed as a primary carer.

There is no suggestion whatsoever in this case that AW is an unsuitable person to be a primary carer for her daughter Z. On the contrary, all the evidence shows that she is a loving, considerate and wholly devoted mother who has discharged her responsibilities towards Z, single-handedly for some time, conscientiously and in a most commendable manner. I therefore see no compelling reason why she should be removed as a primary carer.

Mr Hird gave a further reason why, in his opinion, AW should remain a primary carer. He says at paragraph 27 of his statement:

Again, I find nothing irrational or perverse in this reasoning. Children, in general, tend to become agitated if there is a major change in routine and it is not surprising that such changes would tend to have particularly serious effects on children suffering from Sanfilippo syndrome. There is no doubt in my mind, in the light of the evidence, that removal of her mother, who has been such a devoted and loving carer for so long, would be a most major change for Z and that Mr Hird's concerns, expressed in paragraph 27, are well grounded.

Finally, in regard to Ms Meadowcroft's recommendations on this issue, I would make the following observations. First, it does not seem to me, with respect, that Ms Meadowcroft gave sufficient weight to the important matters that Mr Hird sets out at paragraphs 26 and 27 of his witness statement and which I have just discussed. In the light of what I have said, I do not find her reasons for removing AW as a primary carer to be compelling. Furthermore, it seems to me that Ms Meadowcroft's first and second reasons set out in her letter of 9th December 2005 are largely predicated on the existing position, which all parties regard as unacceptable. Z may at the moment be directing her anger and frustration solely at her mother precisely because her mother is the only carer. Under the Council's care plan, that will no longer be the case and it does not seem to me to be irrational for the Council to proceed on the basis that the introduction of a further professional and well trained carer, albeit for limited periods, may significantly alleviate this particular problem. I note also that, on this point, the Council now have the position carefully monitored (see paragraphs 24 and 25 of Mr Hird's statement) so that the care plan can be reviewed and, if necessary, modified in the light of circumstances as they develop during its implementation. Similarly, AW may well at the moment be exhausted and worn down and may not, therefore, always have the energy to take the appropriate stand vis a vis Z's challenging behaviour. However, again, it does not seem to me to be irrational for the Council to proceed on the basis that the introduction of a further professional and well trained carer and the provision to AW of a reasonable period of respite may re-energise the mother and significantly alleviate the problem identified.

As regards the third reason given by Ms Meadowcroft, it seems to me that there is a strong element of speculation. It could be that Ms Meadowcroft's concerns turn out to be justified and that some further action is required. However, this outcome does not appear to me to be certain or even highly likely and, again, I do not believe that the Council acted irrationally by proceeding on the basis that a well trained professional carer would have the knowledge and skills necessary to ensure that the carer developed his or her own effective relationship with Z and was not excluded in the way which Ms Meadowcroft fears. I note in this regard that the Council, through Mr Hird, is only too conscious of the fact that, given the very special needs of Z, the selection and training of carers is a crucial matter and, at paragraph 37 to 41 of his first witness statement and in his second witness statement of 21st July 2006, Mr Hird sets out at length the steps which the Council has already taken for that purpose.

Ms Meadowcroft's fourth reason related to a concern that AW had time off from her role as primary carer. As I have explained, under the care plan the Council has had regard to this concern. Mr Hird says at paragraph 28 of his first witness statement:

In his second witness statement, at paragraph 9, Mr Hird records that Z has attended both Rainbows Hospice for two separate weeks and also a school residential trip which provided AW with valuable respite time.

For these reasons, I conclude that the Council has not acted irrationally by deciding, in the light of the material presently before it, that AW should be a primary carer for Z.

The second sub-issue is the question of whether there should be two carers for Z at all times, rather than the limited support offered by the present care plan. It seems to me that on this sub-issue the starting point is that AW has for some time been able single handedly to care for Z. This strongly suggests that, as matters currently stand, it is physically possible for one person, with the requisite skill and commitment, to look after Z. Everyone, however, accepts that it is wholly unreasonable to expect one person to be the carer the whole time, given the highly challenging circumstances which confront the carer and which I have already described. It seems to me, therefore, that, at this stage, it is essential that one person should not be the carer the whole time but that the primary carer should have a substantial degree of support and should have a reasonable period of respite from the caring responsibilities.

In my view, therefore, the Council rationally decided, on the material presently before it, that it would be sufficient to provide 21 hours a week of support targeted at the pressure points, early morning and bed time, described by Mr Hird and enabling AW to have eight hours of respite on top of the time when Z was at school or elsewhere out of her immediate care. I was told, also, that there was some relief during the school holiday period. For example, Z has been on a school activity programme out of term between 31st July and 21st August.

Mr Jonathan Swift, who appeared for the Council and to whom I am most grateful for his clear and succinct submissions, buttressed the rationality of the Council's decision in this respect by three further points. First, he stressed that the Council, as I have already mentioned, attached great importance to securing properly trained carers, who would be guided by a well thought-out operational plan for the discharge of their responsibilities. On this basis, the quantity of the support provided would be strengthened by its quality, thus reducing the burdens on AW as primary carer. Secondly, Mr Swift stressed that the present care plan is not set in stone and is to be kept under review. The Council will therefore monitor the position and, if it became apparent that the present support package offered was not adequate to ensure that Z's needs were met, further action would be necessary. Thirdly, he pointed to the likely financial consequences of immediately proceeding to implement Ms Meadowcroft's recommendation, namely that there should be a two-to-one level of care around the clock. He accepted that, if at this stage it was clearly necessary that there should be a two-to-one 24-hour level of care, the Council would have to ensure by one means or another that that level of care was provided. However, he submitted, in my view correctly, that if at this stage the Council was not yet satisfied, which is the case, that that level of care was necessary, it could not disregard the likely financial consequences of offering a package of care to one claimant that significantly exceeded the level which the Council considered to be adequate. The resources of the Council are finite. The Council has responsibilities to others who are in need of support and it must take care, in fairness to other legitimate claimants, that it devotes to one particular claimant only that level of resource which it believes is reasonably required to meet that claimant's needs.

For these reasons, I conclude on the second sub-issue that the Council has not acted irrationally by deciding, on the material presently before it, that it is necessary to provide no more than the level of support set out in the current care plan for the purpose of meeting Z's needs.

I now turn to the second ground of challenge, that under Article 8 of the ECHR.

Article 8 provides:

I believe that I can take this ground quite shortly because it appeared to be common ground that Article 8 added little if anything to the requirements of the legislation. The concept of "physical and psychological integrity of a person" (see Pretty v United Kingdom 35 EHRR 1, pages 35 to 36 at paragraph 16) includes the right of the disabled to participate in the life of the community and to have access to essential economic and social activities and an appropriate range of recreational and cultural activities. I am prepared to accept, as Ms Gerry submits, that Article 8 creates a level of positive obligation to take appropriate measures designed to ensure that a disabled person is not "so circumscribed and so isolated as to be deprived of the possibility of developing his personality"; see Botta v Italy (1998) 26 CHRR 241 and R(A) v East Sussex County Council [2003] EWHC 167 at paragraph 99.

I have already explained why I believe that the Council acted rationally and proportionately in deciding that the current care plan is sufficient to meet the assessed needs of Z and that it is not necessary, at least at this juncture, to adopt the arrangements recommended by Ms Meadowcroft. In these circumstances, the requirements of Article 8 are also satisfied.

Ms Gerry invites me, in the context of the ECHR, to look with intense scrutiny at the basis of the Council's decision. I have doubts whether intense scrutiny is the correct approach to questions of this nature under Article 8 but I have, in any case, sought in this judgment to examine the Council's reasoning in some considerable detail. For the reasons that I have given, I have concluded that the Council's reasoning does stand up to close examination and is rational and proportionate.

Accordingly, both grounds of challenge fail and I dismiss this application for judicial review.

MR SWIFT: My Lord, there are no applications that I wish to make.

KENNETH PARKER QC: No.

MS GERRY: My Lord, there are two. I am instructed to ask for permission to appeal and, my Lord, I appreciate that you have given a very careful and detailed judgment. It will be on the basis, rather than likely to succeed, but on the importance of this issue to the claimant in this case and, for that reason, I would ask for permission to appeal.

KENNETH PARKER QC: Well, I take the view that no important point of legal principle arises in the case and it has really been determined on the particular facts of the case and, therefore, although I accept, of course, the matter is extremely important to your client, I am not going to grant permission to appeal and you should ask the Court of Appeal.

MS GERRY: I am grateful. Second, I ask for detailed assessment of my publicly funded costs.

KENNETH PARKER QC: Yes, you are entitled to that.

I am grateful to both counsel.