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A Local Authority v A Mother & Ors [2012] EWHC 2969 (Fam)

Fact-finding hearing in relation to the administration of medical care to a 9-year old girl by her parents.

J, aged 9, had suffered from asthma almost from birth. She had been under continuous medical care, suffering a number of reported Apparent Life Threatening Events (ALTEs) and nocturnal desaturations (reduction in blood-oxygen levels), which even the country's leading specialists seemed unable to control. Her medical treatment was referred to as the most varied and intensive the court experts had seen. As a result of her continual treatment, her school attendance record was 55-60%. Despite having no apparent learning difficulty, her spelling and reading were delayed by two years or more, and her social development had suffered severely, J not relating well to other children and having no friends.

In November 2011, a leading international professor wrote to the local authority expressing the view that J was being given incorrect, harmful and potentially lethal doses of medication. He recommended that the local authority should remove her from her family so her treatment could be rationalized. He considered that this could be achieved by the proper administration of the steroid Seretide by inhaler.

The local authority sought care orders and, on an interim basis, removed both J and her 3-year old sister, MM, placing them eventually with their grandparents. A year after her removal, J's asthma was well controlled and not impinging on her daily life. Her attendance at school was excellent and she participated fully in school and social life.

At a fact-finding hearing before Jackson J, the local authority's case was that the parents had failed to administer J's steroid medication either properly or at all, and that they had misrepresented and exaggerated descriptions of her desaturations and ALTEs.

The evidence of experts was that a true ALTE would leave J requiring a prolonged period of recovery, and the judge found that in fact there was no convincing evidence that J had suffered one. He found the parents' evidence in relation to this, as with other issues, unreliable.

The judge accepted the hypothesis of one of the doctors that the events began with an exacerbation of J's asthma (the medication for which, during the course of the hearing, the parents conceded they had failed to administer properly), to which the mother's response was increasingly hysterical, with the father doing nothing to calm the situation.

The judge found, even making allowances for the burden of looking after a child with health difficulties, that the parents had been reckless and incompetent in their approach to giving J her basic medication, causing her significant physical and emotional harm. He also found that part of the reason for J's rapid improvement was psychological – that she was now being treated as an ordinary child. He considered that if J was returned to her parents there was a likelihood that she might resume the role of being a sick child.

Having made such findings, the judge directed an assessment of the children's welfare, noting that it was right that the focus also now fell on the care of J's sister.

Summary by Gillon Cameron, barrister, 14 Gray's Inn Square

Neutral Citation Number: [2012] EWHC 2969 (Fam)
Case No. LM11C00050



26 October 2012

B e f o r e :
 (1) A MOTHER 
 (2) A FATHER 
 (3) J 
 (4) MM 
 (Children, represented by their Guardian) Respondents

Malcolm Sharpe, instructed by County Secretary Solicitors Group
Kate Burnell
and John Chukwuemeka, instructed by Forbes Solicitors for the Mother
Nicola Miles
, instructed by Marsden Rawthorn for the Father
Paul Hart
, instructed by JWR Law for the Children's Guardian

Hearing dates 15-26 October 2012
Judgment date: 26 October 2012
Crown Copyright ©

Mr Justice Peter Jackson:

1. This is an application by a local authority (LA) for care orders in relation to two girls: J (aged 9) and MM (aged 3). Their parents are the mother (M), aged 42, and the father (F), aged 38. F works as a self-employed painter and decorator. M trained as a nurse for three years, practised as a bank nurse for 6-7 years, and then worked in another responsible public service job until taking a career break in 2007.

2. The children were removed from home in November 2011 and now live with grandparents, seeing their parents for regular contact.

3. The parents now accept that J suffered significant harm attributable to their parenting, and the LA's submission that the threshold has also been crossed in MM's case has not been challenged. There is no complaint about the care given to MM herself and the application in her case is based upon a likelihood of harm to her arising from the treatment of J.

4. The circumstances relating to J are highly unusual. She suffers from asthma, which has since her removal from her parents been well controlled by common basic inhaled steroid medication (Seretide) and occasional use of an inhaled bronchodilator (Salbutomol). Her asthma does not currently impinge on her daily life to any significant extent, although she had one hospital admission for two days in March 2012 for exacerbation of asthma following an infection. She does not suffer from any other life-limiting conditions. Her regular clinical reviews are all clear. Her attendance at school has been excellent and her participation has been full, in the physical and social aspects of school life as well academically. She is currently a well child physically, and there are soundly-based professional hopes that her current medication can progressively be reduced. Asked how she was in July 2012 by the jointly-instructed medical expert Dr H, J said she was 'much better now'.

5. A year ago, before her removal from her parents, J's apparent health status could hardly have been more different. Her asthma was uncontrolled, despite receiving the most extreme treatments available. She was on intensive treatment to combat reported nocturnal desaturations (reduction in blood-oxygen levels). She had also suffered a number of reported Apparent Life-Threatening Events (ALTEs) while in the care of her parents.

6. J, aged just 8, then described herself as 'a very poorly little girl'. This is not surprising, because since she was under a year old she had been under continuous medical care and her condition had baffled and defeated the efforts of the country's leading specialists, despite every conceivable strategy to control her asthma and to diagnose the cause of desaturations and ALTEs. None of the three specialists who gave evidence had encountered a child who has had more varied or intensive treatment.

7. J's medical records spanning 8 years run to over 4500 pages (12 lever arch files). The history is set out in full and uncontested detail in the reports of Dr H, referred to above, and Dr C, referred to below. Any summary is bound to be incomplete, but it must include:

A Specialist care

J has had the following care:

o Primary: her GP
o Secondary: her local hospital, under Dr O, since September 2004 o Tertiary: the leading regional hospital, under Dr C, since October 2006
o Quaternary: the leading national hospital, under Professor B, since January 2007.

B Hospital admissions

Between 2005 and 2011, in addition to countless routine hospital appointments

o J was admitted to hospital over 50 times, ranging from overnight to a three-month admission in April 2010.
o these admissions included 22 by ambulance, frequently at night.

C Medical examinations

J has been assessed or examined during planned reviews or emergency admissions by

o her GP
o a Paediatric Dietician
o a Consultant Paediatric Cardiologist
o a Consultant Child & Adolescent Psychiatrist
o a Consultant Paediatric Neurologist
o a Consultant Community Paediatrician (Dr O)
o a Clinical Psychologist
o a Consultant Ear, Nose & Throat Surgeon
o specialist Respiratory Nurses
o a Consultant in Paediatric Respiratory Medicine (Dr C)
o two further Consultants in Paediatric Respiratory Medicine at leading specialist hospitals
o a Professor in Paediatric Respirology (Professor B)
o a Consultant in Paediatric Intensive Care, Respiratory and Sleep Medicine (Dr H, providing an independent overview for these proceedings)
o many specialist Registrars locally and across the country
o numerous other doctors not listed above

D Intensive medical treatment

For her asthma, J's treatment progressed rapidly through the recognised stages of asthma treatment, in accordance with the British Guidelines on the Management of Asthma, and then beyond those guidelines. The following are prominent among the many drugs that she has been given:

o inhaled bronchodilators (Salbutomol)
o inhaled steroids (Seretide)
o oral steroids (Prednisolone)
o eventually, unlicensed drug treatments for a child of her age:

o Omalizumab (Xolair) by highly distressing monthly intramuscular injection
o Triamcinoline, an intramuscular steroid
o Methotrexate, an oral steroid to suppress her immune system
o Terbutaline (Bricanyl), delivered subcutaneously via an infusion pump visibly attached to the body for four months prior to her removal from the parents

For her reported desaturations, J had since 2006

o slept wearing a positive airway pressure face mask (BIPAP)
o slept with an oximeter (blood/oxygen level monitor) attached to her toe
o had a large oxygen concentrator at her bedside

E Tests

J has had

o sleep studies at three hospitals
o blood tests and sweat tests
o an echocardiogram, an ECG and a CT scan (whilst sedated)
o a barium swallow
o a bronchoscopy (under general anaesthetic)
o an ENT investigation, leading to removal of her adenoids

F Side effects
The physical risks from this escalating treatment were substantial. For example:

o Steroids can cause weight gain and change in facial appearance, slowing of growth, adrenal suppression, and in the long term high blood pressure and diabetes
o Methotraxate is used in chemotherapy. It carries the risk of nausea, severe infection, liver or renal damage, gastro-intestinal upset and suppression of bone marrow; it requires weekly hospital blood testing to check blood count
o General anaesthetics carry their own risks

Fortunately there is no evidence that J has suffered lasting physical side-effects, but it cannot be known that she has not been affected in some way in the longer term.

G Pain and suffering
J's overall treatment is described by Professor B as having been invasive and unpleasant. She was often extremely frightened and sometimes had to be held down. She developed needle phobia. The distress caused to J by the Xolair injections was such that the nursing staff became so concerned that they asked for the treatment to be discontinued, which it was.

H Emotional, psychological and social consequences
J has been profoundly affected by her experiences. Writing this year, an educational psychologist describes her as 'a youngster who is the product of her life's experiences which until very recently have been those of a child with a life threatening condition requiring considerable accommodation to her medical needs by J herself and all those in contact with her.' During each of her three years at Infant School her attendance record was just 55-60%. A child with no apparent learning difficulty, her spelling and reading is delayed by two years or more. Her social development has also suffered severely. She adopts an adult style of conversation, speaking with knowledge and fluency about her medical condition, which until recently has been a fixation for her. She does not relate well to other children, and has had no friends. Dr H described the amount of medical intervention as being comparable to that with a child with leukaemia. He said that J has had 'a very, very stressful life'.

8. In the light of the above, it is sad and indeed shocking to record that there is now a firm medical consensus, ostensibly accepted by the parents during the course of this hearing, that most of the treatment that J has received down the years has been unnecessary.

9. Matters came to a head in November 2011. On 15 November, the LA, which had no knowledge of the family, received a letter from Professor B, a leading expert with an international reputation, expressing the view that J was being given incorrect, harmful and potentially lethal doses of medication. He recommended immediate removal from her family so that her asthma treatment could be rationalised. He anticipated that proper administration of the steroid Seretide by inhaler would be sufficient to achieve this.

10. On 17 November, the children were removed by the LA. J was admitted to hospital until 22 December, during which time she was readily weaned off almost all her medication, and learned to sleep without artificial aids. She joined MM in foster care until 19 January 2012, when both children were placed with an uncle, and on 20 July they moved to the care of their grandparents. J now manages well on a moderate dose of Seretide, delivered via a purple inhaler.

11. On 17 November 2011, J had told nurses that she only had a blue inhaler (Salbutomol) and did not have a purple one (Seretide).

12. The LA's case, in reliance on unanimous medical opinion, is that the parents failed to administer J's steroid medication (Seretide and possibly also Prednisolone) to her, either properly or at all, and that this explains why her asthma remained uncontrolled for so long. It also alleges that the parents have misrepresented and exaggerated descriptions of J's desaturations and ALTEs.

13. In their written evidence, the parents denied any shortcomings in the way they have managed J's care. Faced with her statement about not having a purple inhaler, they said that they administered the Seretide to her morning and night while she was asleep. During the hearing, they then admitted that on a significant number of occasions (a quarter, M thought, though F thought fewer) they did not administer steroids and that there were other times when they did try but when J would not accept her medicine. They also stated on the first day of the hearing that they were giving half the prescribed dose of Seretide (i.e. one puff twice a day rather than two puffs), saying that this was as a result of a misunderstanding. They now say that they accept the medical opinion that their failure to administer the correct doses regularly was the cause of J's uncontrolled asthma.

14. As to the desaturations and ALTEs, the parents say that these were real and frightening events. Insofar as they may ever have mishandled them, they point to the huge stress of looking after such a sick child, latterly with a new baby in the household. M in particular is described as having been permanently exhausted.

15. It is not in issue that the parents, and M in particular, mistrusted the school's ability to look after J safely. M throughout policed J's time at school closely and repeatedly conveyed to the teachers that they withheld inhaler treatment from her or overstretched her with walking and PE at their peril.

The law
16. It is for the LA to prove its case. It is not for the parents to provide explanations. The standard of proof is the balance of probabilities. The Court cannot proceed on the basis of mere suspicion or concern. If the Court finds that the facts are not made out on the evidence then those facts do not exist as a basis for future decisions.

17. I further direct myself to the guidance given in Re U and Re B (Serious Injury: Standard of Proof) [2004] EWCA Civ 567, [2004] 2 FLR 263, with particular reference to the statements that the cause of an injury or an episode that cannot be explained scientifically remains equivocal, and that the judge in care proceedings must never forget that today's medical certainty may be discarded by the next generation of experts, or that scientific research will throw light into corners that are at present dark. I accept the parents' submission that this may have particular relevance when considering the issues of nocturnal desaturations and ALTEs.

The hearing
18. I have read a substantial amount of written evidence, including a number of helpful medical chronologies. Oral evidence was given over a period of four days by Dr H, Dr C and Professor B, and by the parents. A paediatric outreach nurse (Mrs H) also gave brief evidence.

19. The court's task has been made immeasurably easier by the high standard of presentation by all advocates of a case involving complex and voluminous material. I would particularly acknowledge the huge amount of work undertaken by the LA solicitor in collating the documents and by Mr Sharpe in reducing it to a reliable medical chronology; also the highly effective presentation of both parents' cases even though Ms Burnell, representing M, was only instructed on the last working day before the hearing began.

20. I pose these questions:

(i) Did J suffer ALTEs and desaturations, and if so what was the explanation?
(ii) What caused J's asthma to be so uncontrolled?

21. Two preliminary matters should be emphasised:

(i) J undoubtedly has asthma. The LA does not allege that the parents have fabricated or induced this condition.
(ii) Although a theoretical cause of J's desaturations and ALTEs would be induced airway obstruction (suffocation or strangulation), there is no evidence whatever to support that possibility and the LA makes no such allegation in these proceedings. It plays no part in any consideration of the evidence or in future arrangements for J and MM.

ALTEs and desaturations
22. The cause of J's six or so reported ALTEs is not medically understood. The only occasions on which they have been reported are at home at night in her parents' care. She has not had them at school, in hospital, or when staying or living with other family members down the years. The medical evidence is unanimous that they cannot be explained as being connected with her asthma: such a serious asthma attack in a child would almost certainly lead to death from suffocation or serious neurological damage. Alternatives such as cough syncope or blue breath-holding have not been detected. J does not have vocal chord dysfunction. There is some old evidence from incomplete sleep studies that J may have had some form of sleep disorder breathing, but it is not strong.

23. The parents have given accounts at the time and in their evidence of 'horrible' events. These events are recorded in the very high number of recorded 999 calls, the transcripts of many of which I have read. On such occasions, J is attended to by an apparently hysterical M while F calls the ambulance in accordance with an increasingly predictable routine; J has usually substantially recovered by the time the paramedics arrive. On one occasion (13 April 2010), F used his mobile phone to record J being given mouth-to-mouth resuscitation by M at a time when he says he thought J might have died. This recording was seen by Professor B at the time but has since been lost. F explained that he did this because he felt that they were being disbelieved by the doctors and wanted them to know 'what we were going through and what we had to put up with'.

24. The doctors also have difficulty in explaining J's desaturations. Dr H says that they could in theory result from exacerbations of uncontrolled asthma. There have been two occasions while J was in hospital when desaturation episodes have been witnessed at least in part, notably on 14 April 2010, when she required urgent treatment from the Crash team, and also in November 2006 .

25. I note the evidence of Dr H about these episodes as a whole:

'I now wonder how severe these episodes really were. Perhaps something was occurring, mediated by a) J's extremely medicalised reaction, and b) M's extreme reaction – tired and stressed. A basis for the propagation of hypochondria. I don't have a basis for saying it was all fabricated; I cannot be sure how much was fire and how much was smoke.'

26. The cause of these events is not clearly explained. However, I find that the most probable explanation is that they began with an exacerbation of J's asthma, for which, as it now transpires, she was not receiving basic treatment. M's response was increasingly hysterical, and is likely to have communicated itself frighteningly to J. F stood by, and applied no brakes.

27. I do not find any convincing evidence that J has ever suffered an ALTE or a true respiratory arrest involving unconsciousness. I accept the view of the doctors that a true ALTE would leave her requiring a prolonged period of recovery, which was never the case in fact.

28. I accept Dr H's hypothesis as to the nature of these episodes. They were likely to have been exacerbations of asthma, which got out of hand under the parents' style of management. I rely on the evidence of the 999 calls and my assessment of the parents' reliability as reporters, as to which see below. I also note that J remained in hospital for three months after the April 2010 event and that during this time, she had five episodes of desaturation associated with coughing, each responding rapidly to oxygen and bronchodilators. On no occasion did she require resuscitation. Furthermore, it is notable that J has suffered no ALTEs and few recorded desaturations in the past year. Although this cannot be conclusive in itself, it fortunately points towards the probable absence of an undetected underlying condition that causes respiratory arrests in J.

29. The evidence in relation to J's apparently intractable asthma is clear. Over 95% of sufferers have their asthma readily controlled by the use of common safe and effective remedies such as Salbutomol (a reliever of symptoms) and Seretide (a preventer of symptoms). In the remaining number, half are resolved by ensuring compliance with the drug regime and improving inhaler technique.

30. The probable explanation for J's uncontrolled asthma is simple. As Professor B put it, there is a strong argument that very little steroids of any kind were being given, in the light of the fact that her asthma has for the last year been controlled by two puffs of Seretide twice a day, and little else.

31. Dr H considers that lack of adequate Seretide led to poor asthmatic control, and that it was tantamount to no anti-inflammatory drug being delivered to J. Had it been delivered, the escalation of treatment that took place over the years would not have been expected. There has been no change in environmental factors to explain the change in J's health. The only other explanation for her presentation now is that she has severe asthma that is coincidentally in remission, a prospect that cannot absolutely be dismissed but is remote.

32. Dr C considers that J cannot have been given her oral Prednisolone either, as this would in her view have delivered a substantial dose of steroid, which J cannot have been getting. In this she differs from Dr H. I do not find it possible or necessary to resolve this issue.

33. The parents' account is that they did their best to give J her Seretide (which she did not like) by giving it when asleep, and her Prednisolone by dissolving the tablet and administering it orally by syringe, rewarding J with chocolate for taking it. They missed some occasions, and J sometimes refused, but they honestly thought they were doing what was required and using the required doses.

34. It was at first thought, including by Professor B, that evidence about prescription uptake strongly demonstrated a gross underuse of Seretide and Prednisolone. On closer inspection, it shows an overuse of Salbutomol and a somewhat lower uptake of the steroids than would be expected, but not such as might lead to any definite conclusion. Likewise, the amount of drugs discovered in the home after the children's removal does not suggest hoarding.

35. There are a number of possibilities in relation to the prescription evidence. It is on the face of it not inconsistent with the parents' evidence that they were giving J the quantities that were dispensed, at the level they thought was being prescribed. Alternatively, the parents may have disposed of unused medication, something that they deny.

36. Taking the evidence as a whole, I accept the unanimous medical evidence that J was not receiving any Seretide. My findings go further than the parents' concessions:

(i) I reject their case that they were routinely giving J Seretide while J was asleep, a convoluted and inconvenient procedure.

(ii) I do not accept that they genuinely believed that administration of Seretide to a sleeping child would be effective. Any reasonably competent parent would realise that this could not possibly be so, and M, as a nurse, would know that it was absurd. I do not accept that the parents learned to do it by watching nurses administer a different drug (Salbutomol) during sleep, or that they were encouraged or allowed to do so themselves; if that happened, it can have been on no more than an insignificant handful of occasions.

(iii) The fact that the parents never spoke to anyone about a practice of administering drugs to J in her sleep, even remaining silent when J's inhaler technique was being checked, makes it highly improbable that they were in fact doing it.

(iv) I accept the evidence of Dr C that both she and the nurses would repeatedly reinforce the need for good inhaler technique to M and that the parents knew that J needed a good dose of steroids every day.

(v) I do not accept that the parents genuinely thought J should be on one puff of Seretide twice a day, when she had been prescribed two puffs for more than two years. The fact that some letters and labels described the dosage in different ways did not in my view mislead the parents; they are now relying on it after the event. If there was any doubt about whether the parents know the correct dosage, it is firmly dispelled by Mrs H's evidence about her conversation with M on 10 November 2011.

(vi) M is unlikely to make careless mistakes about J's prescriptions. She was punctilious with the school about J's medication, and took a zero tolerance approach to any stepping out of line on their part.

37. My view of the parents' evidence about Seretide causes me to doubt that they administered Prednisolone in the way that they described (orally by syringe, rather than simply dissolving it in J's breakfast), but I can reach no clear conclusion about this. At all events, I find that she was probably receiving considerably less Prednisolone than was being prescribed:

(i) M understandably did not like the use of steroids.

(ii) J did not like taking her medication, and the parents are both notably ready to defer to her.

38. Insofar as the prescription records show an inflow of steroidal medication into the home, I conclude that it cannot have been effectively administered to J. The medical opinion is to this effect, and I accept it.

39. My assessment of the parents is therefore that they are not reliable witnesses in matters relating to J's health, either in relation to the administration of medication, or in relation to the management of J's acute episodes. Their evidence about asthma treatment has evolved in response to the case as it has developed. The concession that 'only one puff' of Seretide was being given was made on the opening day of the hearing. Their evidence about J's supposed ALTEs is, I find, exaggerated and unreliable in its detail. They have both given unreliable descriptions of J's condition to the school and to the emergency services.

40. Making all allowances for the heavy burden of looking after a child with significant health difficulties, and latterly a new baby, I find that the parents have been reckless and incompetent in their approach to giving J her basic medication, causing her significant physical and emotional harm, and possibly longer term psychological harm as well. This was not 'being overprotective' or 'wrapping J in cotton wool', as they put it: they were inflicting experiences upon her that were cruel because they were unnecessary.

41. I further find that the explanation for J's remarkably improved state of well-being is unlikely to be explained by physiological or pharmaceutical factors alone, but that there are probably psychological reasons as well. It likely that she is benefiting from being in an environment where she is treated as an ordinary child.

42. Unfortunately, the evidence shows that the parents came to believe at an early stage that they knew best in matters concerning J's treatment. This is not altogether unnatural, particularly where M is a nurse, but it has had the most serious consequences. They have used the NHS to the fullest extent, but have not shown a genuinely co-operative and trusting approach towards outsiders, whether in the medical services, or in the school, and it is not surprising that they kept outreach teams at arms' length.

43. The way in which the parents gave evidence showed that even now they have been unable to acknowledge what has happened in more than a superficial way. When the proceedings began their attitude was (in F's words), that 'I do not believe that either myself or my wife has done anything wrong' and that 'I do not agree that Professor B was right to make that referral'. Their late concessions are not sufficient or convincing, I am afraid. They were couched in rehearsed mantras such as 'We have messed up bigtime'. The abiding impression from their evidence was in fact a sense that they still feel badly treated, and there was even an undercurrent of self-justifying anger towards medical and other professionals, particularly from F.

44. An assessment of the children's welfare will now be made, and the focus will now return equally to MM. In J's case, there is a likelihood (in the sense of a risk that cannot sensibly be ignored) that, if returned to her parents, she might resume the role of being a sick child. That risk must now be assessed alongside other welfare factors. The parents will need to demonstrate a significant and dependable change in their approach.

45. My final observation is that each of the doctors recognised that there are lessons to be learned from J's case. Paediatricians are conditioned to trust parents, particularly where a child has a genuine medical condition. That instinct was strong in this case, despite indications that it needed to be examined. Dr C had concerns about the reliability of these parents as long ago as 2008 but, having taken advice from her child protection lead, she did not pursue her doubts, a decision she regrets. The doctors will form their own conclusions, but those may include the following:

(1) Faced with a possible conflict of interest in circumstances involving serious consequences, the preservation of a working relationship with parents cannot take precedence over the interests of the child.

(2) The principle of diagnostic parsimony (c.f. Occam's Razor) proposes that simple explanations for medical conditions are exhausted before complex and unusual treatments are attempted.

(3) Fragmentation of responsibility between different hospitals carries the risk that the whole picture is not seen and understood by anyone – in J's case, no proper meeting was held until November 2011, and even that did not involve the LA.

(4) Where dilemmas of this kind arise, involving social as well as medical issues, doctors and schools should not be reluctant to call for a comprehensive assessment that can only be carried out by the ordinary child protection services.