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Take my breath away

A discussion of A Local Authority v A mother and others 2012    (which has to be the most anonymous of anonymisations I have seen to date… I  almost wish they had called it  Some organisation versus Someone 2012  – or  Applicant versus Respondent 2012, you can’t get much more anonymous than that)   – let’s call it “the Asthma case” so that we can remember it.

 

 

The case can be found here

 

http://www.bailii.org/ew/cases/EWHC/Fam/2012/2969.html

 

 

It is a High Court case, dealt with by the Honourable Mr Justice Peter Jackson (of whom regular readers of this blog will know that I have something of a brain-crush on)

It is an interesting one  – the child in question is nine, and has had an extensive history of medical treatment and interventions arising from her asthma

 

  1. 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’.
  1. 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.
  1. 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.
  1. 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:

  • Primary: her GP
  • Secondary: her local hospital, under Dr O, since September 2004
  • Tertiary: the leading regional hospital, under Dr C, since October 2006
  • 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

  • J was admitted to hospital over 50 times, ranging from overnight to a three-month admission in April 2010.
  • 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

  • her GP
  • a Paediatric Dietician
  • a Consultant Paediatric Cardiologist
  • a Consultant Child & Adolescent Psychiatrist
  • a Consultant Paediatric Neurologist
  • a Consultant Community Paediatrician (Dr O)
  • a Clinical Psychologist
  • a Consultant Ear, Nose & Throat Surgeon
  • specialist Respiratory Nurses
  • a Consultant in Paediatric Respiratory Medicine (Dr C)
  • two further Consultants in Paediatric Respiratory Medicine at leading specialist hospitals
  • a Professor in Paediatric Respirology (Professor B)
  • a Consultant in Paediatric Intensive Care, Respiratory and Sleep Medicine (Dr H, providing an independent overview for these proceedings)
  • many specialist Registrars locally and across the country
  • 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:

  • inhaled bronchodilators (Salbutomol)
  • inhaled steroids (Seretide)
  • oral steroids (Prednisolone)
  • eventually, unlicensed drug treatments for a child of her age:
    • Omalizumab (Xolair) by highly distressing monthly intramuscular injection
    • Triamcinoline, an intramuscular steroid
    • Methotrexate, an oral steroid to suppress her immune system
    • 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

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

E Tests

J has had

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

F Side effects

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

  • 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
  • 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
  • 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’.

  1. 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.

 

 

 

What happened, eventually, is that one of the doctors in the case alerted the Local Authority and recommended that J be placed in foster care, because he was of the view that the extreme treatments this young girl was having were not required by her condition and that her being away from the parents might demonstrate that.

 

To an extent, they did – in foster care, her asthma condition was entirely controlled by the same twice-daily administration of steroids through an inhaler as the parents had been told to give the child.

 

On the face of it, this looked like it might be a factitious illness case (we don’t call them Munchausen’s Syndrome any more, that being rather tainted, and we never did call it the correct name which was Raspe’s Syndrome  – as Munchausen was invented by Raspe and is a fictional character, although actually there’s some doubt as to whether it is a syndrome at all, rather than just being a small subset of behaviour… end of sidetrack)

 

But the thrust of the case and the medical evidence  rather than being whether the girls symptoms were being faked, eventually turned on whether the parents were actually giving this very poorly young girl the twice a day inhaler that she needed. Straightforward, though particularly unusual, neglect

 

  1. 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.
  1. 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.
  1. 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.

 

 

 

On this key issue, the Judge determined that the parents had not been giving their daughter her medication and that this is what had led to her asthma being so uncontrolled and problematic

 

  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.

  1. 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.

  1. 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.
  1. 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.

 

 

The final part is what lifts the case from being very fact specific  (I’ve done an insane amount of care proceedings in twenty years of practice, but have never come across one that arose from parents not giving their child asthma medicine  – some that come close on children with naso-gastric tubes for feeding perhaps) to one of broader interest.   (the underlining is my own, for emphasis)

 

  1. 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.

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About suesspiciousminds

Law geek, local authority care hack, fascinated by words and quirky information; deeply committed to cheesecake and beer.

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