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Keep feeling Vaccination

 

And so the conversation turned, until the sun went down

 

This is a High Court case involving parents who were already in care proceedings, who did not want their child to be vaccinated.  (The decision not to vaccinate was not the reason for the care proceedings, and I think it’s unlikely that it would be considered threshold criteria.)

It helpfully gathers all of the other authorities and principles on vaccination, so although it is a case that turns on its facts (it is not authority for the Court always will or always won’t order vaccination to go ahead), it is useful if it comes up again. It also raises interesting philosophical questions about State intervention and parental autonomy.

 

Re SL (Permission to vaccinate) 2017

http://www.bailii.org/ew/cases/EWHC/Fam/2017/125.html

 

SL was seven months old, and one of four siblings within care proceedings. He was the subject of an Interim Care Order.

 

The local authority now applies under the inherent jurisdiction for a declaration that it is in SL’s best interests for the local authority to be given permission to arrange for him to receive the Haemophilus Influenza Type b (Hib) vaccine (hereafter, the ‘Hib’ vaccine) and the pneumococcal conjugate (PCV) vaccine (hereafter the ‘PCV’ vaccine) in circumstances where the mother objects to this course of action.

 

It is something of a law geek pleasure to see that the Dr in the case was a Dr De Keyser, and the advocates in the case would be made of stronger stuff than me if they avoided any temptation to fall into the ‘you say de keyser, I say de Geezer’ dialogue from the Supreme Court article 50 case.

 

The mother’s opposition to the vaccination was because she considered that her older children had suffered adverse reactions to their own vaccinations

 

 

  • The mother’s opposition to SL being given the Hib vaccine and the PCV vaccine is based primarily on adverse reactions to being so immunised that she states that her other children have undergone in the past. Professor Kroll was accordingly also asked to consider whether there is anything in the older children’s medical records that causes him concern regarding SL receiving the disputed immunisations. Professor Kroll, being careful to note that the abbreviated medical records provided to him may not be complete, makes clear that in none of the records he reviewed relating to SL’s siblings detail any significant adverse reaction to vaccination in general or to Hib or PCV vaccination in particular in any of the children. Professor Kroll further opines that even had there been evidence in the medical records of some reaction, this would not, in general, constitute a medical contraindication to vaccinating SL.
  • Within the foregoing context, Professor Kroll concludes that there is no medical reason why SL ought not to have the vaccinations in issue according to the UK immunisation schedule. He further concludes that withholding the Hib and PCV vaccines for SL would mean deliberately maintaining his vulnerability, which is at its maximum given his present age, to two very serious infections which are major causes of infection, including bacterial meningitis. Professor Kroll is clear that whilst not providing total protection, a full course of vaccination provides a “very substantial degree” of protection against these infections. He concludes that, in his expert medical opinion, SL needs to be immunised without delay and to receive booster immunisations at the appropriate time.

 

 

The LA argued that the Court should use their inherent jurisdiction    but they meant “Magical Sparkle Powers TM” to direct that the child should have vaccinations

 

 

  • On behalf of the local authority, Ms Markham QC and Ms Georges submit that the local authority should be given permission to ensure that SL receives the Hib vaccine and the PCV vaccine, the administration of such vaccines being in his best interests. Developing this submission, in particular Ms Markham QC and Ms Georges argue that:

 

(a) The local authority acknowledges the mother’s views regarding the immunisation of SL. The local authority further recognises that the declaration it seeks trespasses on the mother’s Art 8 right to respect for her private and family life insofar as the decision whether or not to immunise a child is ordinarily a function of the exercise of parental responsibility.

(b) On the evidence before the court however, the balance of risk is clear. Namely, the expert evidence indicates clearly that the risk attendant on giving the vaccines to SL are outweighed by the risks of not giving them to him, in particular when regard is had to the likely gravity of the consequences of the former when compared to potential gravity of the consequences of the latter.

(c) Moreover, on the evidence before the court, the decision whether to immunise SL against Hib and pneumococcal infections is not a finely balanced one. Rather, it is plain on the evidence before the court that vaccination is in his best interests.

(d) Had the local authority received further information or evidence suggesting that there was some doubt, or a finer balance with respect to the question of whether SL should receive the vaccines in issue, the local authority may have changed its position. However, no such information or evidence has materialised notwithstanding the directions of the court.

 

The mother’s legal team made these submissions

 

 

  • Ms Connolly QC and Ms Gill made the following submissions on behalf of the mother:

 

(a) Applications for a declaration that it is in the child’s best interests to receive vaccinations are rare. In respect of the decision whether or not to vaccinate a child, parents are accorded a significant degree of autonomy by the State. Ordinarily, a parent in the position of the mother would get to decide whether to have a child immunised as a function of the exercise of that parent’s parental responsibility and would not be brought to court if the parental decision were that the vaccinations should not be given.

(b) The mother relies on three alleged instances of her older children attending hospital following what the mother contends were adverse reactions to immunisation. Whilst the mother has not produced the records associated with these attendances (or, it must be observed, evidence that such records were requested but unavailable), and whilst none of the asserted instances are referred to in the records reviewed by Professor Kroll, she asserts to the court that VL suffered a swollen leg, that DL suffered an ear infection and the CL developed a rash.

(c) The mother’s objections, and the extent to which they are reasonable, must be viewed in the context of the particular matters with which these proceedings are concerned, albeit matters wholly unrelated to the issue of immunisation, and in the context of the SL not being in her care, which factors heighten the mother’s concerns regarding the administration of the vaccines to SL in the context of the alleged adverse reactions experienced by SL’s siblings.

(d) Whilst the consequences of SL catching the diseases, which the respective vaccines are designed to protect against are potentially grave, risk of SL catching the diseases against which the vaccines protect is low, as is the risk that the diseases will have a grave outcome if SL were to catch them.

(e) Within this context, the mother’s considered decision with respect to the vaccination of SL should be respected by the court and the application of the local authority dismissed having regard to the legal principles applicable to that application.

 

On behalf of the child

 

  • On behalf of SL, Mr Tughan QC and Ms Piccos submit that it is plainly in SL’s best interests for the outstanding vaccinations to be given to him. As does the local authority, on behalf of SL Mr Tughan QC and Ms Piccos recognise that a parent is, ordinarily, accorded a significant degree of autonomy by the State in deciding in the exercise of their parental responsibility whether to vaccinate a child. However, in circumstances where there is a dispute between those holding parental responsibility for SL (namely, the mother and the local authority) such that the court is required to determine that dispute by reference to SL’ best interests, Mr Tughan QC and Ms Piccos submit that the evidence before the court indicates that the balance of risk falls firmly in favour of SL receiving the vaccinations on the UK Immunisation Schedule that he has not received to date.
  • With respect to the weight to be attached to the views of the mother, Mr Tughan QC and Ms Piccos submit that the court must consider these views through the prism of the aspects of the mother’s personality identified in the expert evidence in the 2014 proceedings, specifically an obsessive compulsive personality disorder with schizoid personality traits, paranoid personality features and narcissistic personality features.

 

 

I have an unusual position here. My position is that of course children should be vaccinated, and that the scare stories about vaccination lack any proper evidential rigour.  However, my position is also that parents have the capacity to make decisions about their children and their medical treatment even if those decisions are ones that others might consider reckless or stupid or foolhardy. I don’t see that the parent should lose that capacity and have it taken away from them at an INTERIM stage. It might be different if the Court conclude the care proceedings and make final orders meaning that the child will be cared for elsewhere during the remainder of their childhood. But I’d have said that here, autonomy trumps my view that vaccination benefits children, and society.  I would possibly draw a distinction where the child is being denied medical treatment by a parent’s decision which is causing the child pain, harm, suffering or puts their life in danger. But that wasn’t the case here – vaccination would protect the child from a possible future risk, but this child was in no imminent danger.  That’s just my own personal view, which is worth nothing at all, but just to let you know where I’m coming from.

 

The law

 

 

  • As Ms Connolly QC and Ms Gill point out, applications of this nature are rare and there are only a limited number of reported decisions concerning the issue of immunisation.
  • In Re C (Welfare of Child: Immunisation) [2003] 2 FLR 1054, a case which considered a dispute between two parents with parental responsibility within the context of the framework provided by s 8 of the Children Act 1989, Sumner J held that the children concerned should receive immunisations appropriate to their age against the wishes of the mother but in line with the recommendation of the expert medical evidence before the court (which in that case included a report from Dr Kroll instructed by CAFCASS Legal). Sumner J’s decision was upheld on appeal. In in Re C (Welfare of Child: Immunisation) [2003] 2 FLR 1095, Thorpe LJ rejected the repeated categorisation of the course of immunisation as non-essential invasive treatment and considered it to be more correctly categorised as preventative healthcare. Within this context, he observed that:

 

“[16] The apparent freedom of each [parent] to act alone is not, however, unfettered. As Dame Elizabeth Butler-Sloss P said in the case of Re J (Specific Issue Orders: Child’s Religious Upbringing and Circumcision) [2000] 1 FLR 571 at 577D:

‘There is, in my view, a small group of important decisions made on behalf of a child which, in the absence of agreement of those with parental responsibility, ought not to be carried out or arranged by one parent carer although she has parental responsibility under s 2(7) of the Children Act 1989. Such a decision ought not to be made without the specific approval of the court. Sterilisation is one example. The change of a child’s surname is another.’

[17] In that case the court held that the circumcision of the child should only be carried out where the parents agree or where a court, in settling the dispute between them, decides that the operation is in the best interests of the child. In my opinion this appeal demonstrates that hotly contested issues of immunisation are to be added to that ‘small group of important decisions’.

[18] Of course where the obligation falls on the court to decide such an issue the court must apply the child’s welfare as its paramount consideration (s 1(1) of the Children Act 1989) and also have regard to the s 1(3) checklist.”

 

  • At first instance in Re C (Welfare of Child: Immunisation) Sumner J made clear that he had had regard to the wide scope for parental opposition to medical intervention in respect of a child, which he summarised as ranging from obvious cases where the objection would be widely regarded as having no validity in child welfare terms to cases where there is scope for genuine debate on the issue. Within this context, Sumner J acknowledged a parent’s right to choose whether they accepted medical advice to have their children immunised and that immunisation was a subject of genuine public debate. Sumner J further made clear that his decision should not be seen as a general approval of immunisation for children and that each case is fact specific.
  • In Re A, B, C and D (Welfare of Children: Immunisation) [2011] EWHC 4033 (Fam), Theis J considered the issue of vaccinations in the context of children who were the subject of final care orders, where the dispute was between the local authority, who shared parental responsibility under those orders, and the parents with parental responsibility as to whether the children should be vaccinated. Within this context, Theis J proceeded to determine the question under the auspice of the inherent jurisdiction of the High Court. She concluded the children in that case should be vaccinated. Theis J articulated the following applicable legal principles:

 

“[9] There is no dispute between the parties as to the law. Once the inherent jurisdiction is invoked the welfare of the child is the paramount consideration.

[10] The Court of Appeal in Re J (A Minor) (Wardship: Medical Treatment) [1991] 1 FLR 366 considered the future medical management of a severely brain-damaged premature baby with a considerably shortened life expectancy. Lord Donaldson MR said at 370 ‘…The court, when exercising the parens patriae jurisdiction, takes over the rights and duties of the parents, although this is not to say that the parents will be excluded from the decision-making process. Nevertheless, in the end, the responsibility for the decision whether to give or to withhold consent is that of the court alone.’

[11] In this case the dispute is the exercise of parental responsibility as between the parents and the Local Authority. I have been referred to a number of cases that look at how the parent’s views should be considered by the court. In Re Z (A Minor)(Freedom of Publication) [1996] 1 FLR 191 Sir Thomas Bingham MR said at 217 B-C:

‘I would for my part accept without reservation that the decision of a devoted and responsible parent should be treated with respect. It should certainly not be disregarded or lightly set aside. But the role of the court is to exercise an independent and objective judgment. If that judgment is in accord with that of the devoted and responsible parent, well and good. If it is not, then it is the duty of the court, after giving due weight to the view of the devoted and responsible parent, to give effect to its own judgment. That is what it is there for. Its judgment may of course be wrong. So may that of the parent. But once the jurisdiction of the court is invoked its clear duty is to reach and express the best judgment it can’.

In Re T (Wardship: Medical Treatment) [1997] 1 FLR 502 Butler Sloss P said at 509 that

‘…it is clear that when an application under the inherent jurisdiction is made to the court the welfare of the child is the paramount consideration. The consent or refusal of consent of the parents is an important consideration to weigh in the balancing exercise to be carried out by the judge. In that context the extent to which the court will have regard to the view of the parent will depend upon the court’s assessment of that view. But as Sir Thomas Bingham MR said in Re Z, the court decides and in doing so may overrule the decision of a reasonable parent’.

[12] The court also has to carefully consider Article 8 of the European Convention and, in particular, consider whether what is proposed is a justified and proportionate interference with family life.”

 

  • Within the context of the last point elucidated by Theis J concerning rights under Art 8 of the ECHR, Art 24 of the United Nations Convention on the Rights of the Child provides that States parties to that Convention recognise the right of the child to the enjoyment of the highest attainable standard of health and, within that context, imposes on States parties an obligation to pursue full implementation of that right, including the taking of appropriate measures to combat disease.
  • The most recent decision on immunisation appears to be a further decision of Theis J in the case of F v F (MMR Vaccine) [2014] 1 FLR 1328. In that case, Theis J made the following important observation in relation to cases of this nature at [21]:

 

“This is an issue concerning the exercise of parental responsibility that in most circumstances is negotiated between the parents and their decision put into effect. Parents often have to make decisions for children to meet their welfare needs, as Ms Vivian observed that is ‘what parenting is about’. As with many aspects of the exercise of parental responsibility, in particular as children get older, it will often require discussion and explanation by the parents of their decision to their children which may be against their wishes and feelings. This has not been possible in this case as the parents disagree and the court has been asked to step in to make the decision. The court can only make decisions on the evidence that it has in each particular case and by considering the welfare needs of each child. By doing so in this case the court does not in any way dictate how this issue should be decided in other situations; each case is fact specific. This case is only concerned with the welfare needs of these children.”

 

  • Thus, where there is a dispute between those holding parental responsibility (whether as between parents or between parents and a local authority holding a care order) as to whether such a vaccination or vaccinations should take place the court has jurisdiction to determine the dispute. In determining the question before the court, the welfare of the child is the paramount consideration of the court. Within this context, the court must accord appropriate weight to the views of the parent or parents having assessed those views and must exercise an independent and objective judgment on the basis of the totality of the evidence before it, including, but not limited to, the expert evidence.
  • In this case the court is concerned with the issue of vaccinations in the context of children who are the subject of care orders and thus the dispute is between the local authority sharing parental responsibility for the child and the parent with parental responsibility. In the circumstances where SL is in the care of the local authority, by virtue of s 9(1) of the Children Act 1989 the local authority cannot apply for a specific issue order with respect to the issue of vaccination. Further, given the gravity of the issue in dispute, it is not appropriate for the local authority simply to give its consent to immunisation pursuant to the provisions of s 33(3) of the Children Act 1989 on the basis of its shared parental responsibility for SL under the interim care order (see A Local Authority v SB, AB & MB) [2010] 2 FLR 1203 and Re Jake (Withholding Medical Treatment) [2015] EWHC 2442 (Fam)).
  • In the circumstances, as in Re A, B, C and D (Welfare of Children: Immunisation) [2011] EWHC 4033 (Fam), and whilst the C2 application made by the local authority on 21 October 2016 is for an order in existing Children Act proceedings, the application the local authority pursues before this court must in fact be an application for relief under the inherent jurisdiction of the High Court. The local authority requires leave to make such an application, which application for leave is to be considered against the criteria set out in s 100(4) of the Children Act 1989. Being satisfied that the relief sought by the local authority does not contravene s 100(2) of the Children Act 1989 and that the criteria for granting leave to the local authority to make an application under the inherent jurisdiction set out in s 100(4) of the Act are met, I granted permission for the local authority to make an application for relief under the inherent jurisdiction of the High Court.

 

 

 

Decision

 

 

  • I acknowledge Ms Connolly QC and Ms Gill’s submission that parents are ordinarily accorded a significant degree of autonomy when deciding whether to have their child immunised as a function of the exercise of their parental responsibility. Whilst, historically, vaccination was compelled by law under the Vaccination Act 1853 and subsequent legislation, vaccination is not now compulsory in this jurisdiction, the Vaccination Act 1898 having introduced an exception allowing parents who did not believe vaccination was efficacious or safe to obtain a certificate of exemption (introducing the concept of the “conscientious objector” into English law) and the National Health Service Act 1946 having thereafter repealed the compulsory vaccination laws in their entirety. However, I cannot accept Ms Connolly QC and Ms Gill’s submission that, ordinarily, a parent in the position of the mother (my emphasis) would get to decide whether to have a child immunised as a function of the exercise of her parental responsibility.
  • The fact that this court is required to decide whether SL should be immunised is, in this case, a function of a dispute between those who hold of parental responsibility for SL, namely the mother and the local authority (the identity of SL’s father not being known). Where there is such a dispute the court is under an obligation to determine that dispute in accordance with the legal principles articulated above. That determination is not an example of overreaching by the State into an area of parental choice but, rather, is an example of the court discharging its obligation to ensure the welfare of the child is safeguarded in circumstances where those charged with meeting the child’s welfare needs cannot agree on how that end is best achieved. Again, as Theis J noted in Re A, B, C and D (Welfare of Children: Immunisation), in Re Z (A Minor)(Freedom of Publication) [1996] 1 FLR 191 Sir Thomas Bingham MR said at 217 B-C:

 

“I would for my part accept without reservation that the decision of a devoted and responsible parent should be treated with respect. It should certainly not be disregarded or lightly set aside. But the role of the court is to exercise an independent and objective judgment. If that judgment is in accord with that of the devoted and responsible parent, well and good. If it is not, then it is the duty of the court, after giving due weight to the view of the devoted and responsible parent, to give effect to its own judgment. That is what it is there for. Its judgment may of course be wrong. So may that of the parent. But once the jurisdiction of the court is invoked its clear duty is to reach and express the best judgment it can”.

 

  • Thus, the fact that parents are ordinarily accorded a significant degree of autonomy when deciding whether to have their child immunised as a function of the exercise of their parental responsibility where there is no dispute between them, and the fact that, accordingly, this issue rarely comes before the court, does not, in circumstances where there is in this case a frank disagreement between her and the local authority as to what is in SL’s best interests, mean that this mother is being somehow singled out as compared to other parents with respect to the issue of vaccination.
  • The fact that parents are ordinarily accorded a significant degree of autonomy when deciding whether to have their child immunised as a function of the exercise of their parental responsibility where there is no dispute does, however, mean that when the issue has to come before the court, the court must accord proper weight to the views of the parent. I have of course given very careful consideration to the mother’s objections to vaccination. It is not difficult to see how the, albeit unrelated, events with which this court is concerned have focused her mind on the potential risks of vaccination to SL’s wellbeing. The mother has decided that those risks outweigh the risks of not vaccinating SL. A parent is fully entitled to make a decision based on their assessment of the likelihood of infection and how severe that infection might be in terms of outcome.
  • However, I must and do have regard to the fact that the mother’s evaluation does not accord with the expert medical evidence before the court. Indeed, that medical evaluation reaches a diametrically opposed view. Whilst welfare is a very wide concept, and whilst the principle of best interests means more than just medical best interests, the unchallenged conclusions of the expert instructed to assist the court on the question of immunisation are, necessarily, a powerful pointer towards what is in SL’s best interests on the question of immunisation. I must also have regard to the fact that, whilst the mother submits that her considered view is grounded in her direct experience of adverse reactions in her other children, she has not in any way evidenced the factual basis she contends grounds her reasoned evaluation of the risks on this basis, despite being given every opportunity to do so. These matters significantly reduce the weight I am able to attach to the mother’s views in respect of the vaccination of SL as against the evidence of the expert.
  • Lastly in respect of the mother’s views, whilst I note the submissions of Mr Tughan QC and Ms Piccos regarding the impact of the expert opinion in the 2014 proceedings regarding the mother’s personality traits, in circumstances where I have not heard evidence on how those matters may impact on the mother’s views on the subject matter presently before the court, I make clear that I have not taken account of those matters when evaluating the mother’s views and the weight to attach to them.
  • Within the foregoing context, having regard to all of the evidence before the court and evaluating the position by reference to the principle that SL’s welfare is the court’s paramount consideration, I am satisfied that it is in SL’s best interests to receive the outstanding Hib and PCV vaccines.
  • Finally, I have, as I must, paid careful regard to the Art 8 right of the mother to respect for her family life. A decision by the court (as a public authority pursuant to s 6(3)(a) of the Human Rights Act 1998) to authorise the immunisation of SL in the face of the mother’s objection, and in circumstances where parents are ordinarily accorded a significant degree of autonomy by the State when deciding whether to have their child immunised as a function of the exercise of their parental responsibility where there is no dispute, constitutes an interference in the mother’s Art 8 right to respect for family life. For that interference to be lawful it must be justified by reference to the terms of Art 8(2). Having regard to the evidence set out above, I am satisfied that the interference in the mother’s right to respect for family life under Art 8 constituted by a decision of this court to authorise the immunisation of SL against her wishes is in accordance with the law and necessary in a democratic society in the interests protecting SL’s health and, accordingly, is a justified and proportionate interference. I am reinforced in this conclusion by the fact that a decision to authorise the immunisation of SL accords with his right to the enjoyment of the highest attainable standard of health under Art 24 of the UNCRC.

 

CONCLUSION

 

  • For the reasons I have given, I am satisfied that it is appropriate in this case to make a declaration under the inherent jurisdiction of the High Court that it is in SL’s best interests for the local authority to be given permission to arrange for him to receive the Hib vaccine and the PCV vaccine and I do so.
  • Finally, I make clear that the decision of the court is not a judgment on whether immunisation is a good thing or bad thing generally. Like Sumner J and Theis J before me, I emphasise that the court is not saying anything about the merits of vaccination more widely and does not in any way seek to dictate how this issue should be approached in other situations. This judgment is concerned solely with an evaluation of one child’s best interests based on the very particular circumstances of this case and on the evidence that is available to the court.
  • That is my judgment.

 

 

I think this case was rightly decided on the law as it stands. I’m not sure I’m happy with the law as it stands. Here we have a position where a parent who is not in care proceedings gets to say yay or nay to vaccinations and their decision will be sacrosanct, but a parent who is in care proceedings (perhaps with allegations of threshold which are not finally proven) does not have that same right.  I think the right thing for the child was to be vaccinated, but I think as ever with magical sparkle powers, the Court does things with the very best of intentions which end up being the foundation for the next step away from autonomy, and the next step becomes foundation for the one after.

 

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The Ashya King wardship judgment

We have all been eagerly awaiting this, and it is now out.

 

This is the judgment given by Mr Justice Baker in the wardship proceedings, setting out the reasons why on Friday of last week a solution was reached that Ashya would be able to receive proton-beam therapy treatment in Prague. Ashya is no longer a ward of Court, and all decisions about him will be made by his parents.

http://www.bailii.org/ew/cases/EWHC/Fam/2014/2964.html

 

It is not one of those rambling long judgment that would be incomprehensible to non lawyers – it runs about four pages and most of it is in plain English. I don’t often suggest that normal human beings read a judgment, but in this case, I would. It is a very good piece of work by Baker J  (not surprisingly, he writes a good judgment)

 

[It doesn’t answer my law geek question of whether the parents received free legal representation – I hope that they did. They were certainly represented, and the firm they used does do legal aid work. And there’s no debate at the end about costs, so I hope they got legal aid. One suspects that even the Legal Aid Agency had enough common sense to not want to be seen to be saying that the family should spend their treatment fund on lawyers]

The judgment focuses rather more on treatment and the future than a forensic delve into the past and what has gone wrong (understandably, because a solution had been arrived at that would please everyone, and also because if there is to be any suing going on about what happened it is likely to focus on the issue of the European arrest warrant and the arrest and detention of the parents, which is outside of the scope of the family Court)

 

What the Judge does say about the application for wardship itself is this :-

 

32 When Mr and Mrs King took Ashya from hospital on 28th August, the medical staff were understandably very concerned that the boy would suffer significant harm by being removed from the specialist care they were providing. When the local authority was informed about what had happened, and that it was believed that the parents had left the country, the social workers understandably concluded that there were reasonable grounds for believing that Ashya was at risk of suffering significant harm by being driven across Europe without medical assistance at a time when he urgently required post-operative therapy. I therefore conclude that the local authority acted entirely correctly in applying to the High Court, and further that Judge Arthur was right, on the evidence before him, to make Ashya a ward of court. My comments are confined to the matters within the family jurisdiction. I make no comment as to whether or not it was appropriate to seek a European Arrest Warrant. I merely observe that one consequence of this course was that Ashya was separated from his parents and left alone for several days in the Spanish hospital. As I observed at the hearing on 2nd September, whatever the rights and wrongs of his parents’ actions, it was not in Ashya’s best interests to be separated from them in such circumstances.

  1. The steps taken by the local authority and Judge Arthur on 29th August were entirely justified on the evidence then available. As at that date, there were reasonable grounds for believing that Ashya was at risk of suffering significant harm. A week later, the picture had changed and the court was faced with a completely different decision.

 

 

I’m sure that there will be many who think otherwise, but this judgment is very helpful in setting out the facts of the case when there has been so much speculation.

 

I am pleased that Ashya is back with his parents and that he is receiving treatment, and whatever else we might feel about this case, I’m sure that all of us wish him and his parents all the very best for the future.

 

 

 

Parents deciding not to go ahead with cancer treatment

The parents of Ayesha King have been in the news this weekend (see here, for example  http://www.theguardian.com/society/2014/aug/31/ashya-king-found-spain-parents-arrested   ) and the parents removed their child from hospital against medical advice and took their child out of the country.   The Kings were wanting a form of therapy for their son’s cancer that is not available on the NHS, and found themselves in a quarrel with the medical professionals in England, leading them to take their son out of the country.  That led to a European arrest warrant being issued and the King’s being found and arrested.

 

I don’t want to write too much about the individual case, because it is all very real and raw and painful for this family, and we don’t have the facts that would allow us to make a proper decision about what they were doing was right or wrong.

 

This piece is more about the general principle of whether a parent has the right to decide what is best for their child, or whether the doctors have the final say?   For an adult, they can listen to medical advice and if they are capable of understanding it are entitled to decline to follow it. The State can’t enforce medical treatment on anyone who is able to understand the consequences and who says “no thanks”.  For a child, the same thing doesn’t seem to apply. A parent who understands the advice but disagrees with it, can still find themselves in Court and with an order being made authorising the doctors to carry out the treatment.

That’s a body of jurisprudence which began with the thorny issue of children of Jehovah’s Witnesses who needed blood transfusions. Their religion forbids blood transfusions, and the parents in these cases were refusing the treatment. Without the treatment, the child would die, and that led to a number of applications to the High Court, finally arriving at the accommodation that there would be no adverse religious consequences for the parent IF the transfusion happened because the Court ordered it, and that’s the way those are dealt with now. Of course, when balancing a child’s life against parental wishes, there’s likely to only be one winner.

 

Things got more difficult in the case of conjoined twins. The medical conclusion was that together, both would die, but if they were separated one would live and one would die. The parents for moral and religious reasons were not prepared to sanction the treatment.  The case went up to the Supreme Court and is probably one of the most difficult decisions ever made. The Court were particularly in difficulty with article 2, the right to life. The Court is bound by article 2 and has to uphold it, but a determination that the operation would go ahead would kill one of the twins where a refusal of the operation would probably kill both.

Re A (children) 2000

http://www.bailii.org/ew/cases/EWCA/Civ/2000/254.html

The Court sanctioned the operation and overrode the parents objections, although they were intelligent, rational people who understood the risks and consequences but were of the view that every day of life for their children was precious and they did not want to shorten that, even if it might save one of the twins.  There are some commentators (myself included) who consider that the Court here got into tricky waters – if a parent is the person who are capable of exercising decisions for their child and they are choosing between two dreadful outcomes  (as opposed to blood transfusion or die) then shouldn’t the State respect their decision?

Difficult cases make bad law, so they say. But these two cases were clearly about where failure to act would result in death, and perhaps the Court is entitled to intervene. The problem for me is that once you start down a road of the State being in charge in situation X, along comes situation Y, not as bad but still one where the State wants to intervene, and a slippery slope begins.

If there’s a life-saving treatment and the parents are refusing it, then Re A (children) 2000 is probably authority for the State taking over the decision. But what about where the treatment is not going to save life or cure the illness, but instead prolong life, perhaps with reduced quality of life?

 

In 2012 there were a couple of cases where parents did not want their child to undergo chemo-therapy and sought alternative treatments.  This is not an easy thing to contemplate, and people’s views on it tend to be very polarised – between the parents are parents and they can do what they think is right, to any parent would follow medical advice and get their child the help they need.

 

There were a spate of these cases in 2012, and I wrote about one where the High Court dealt with this issue extensively (the mother wanted to pursue alternative treatment and the father originally agreed but by the time of the Court hearing had come round to supporting the medical professionals)

https://suesspiciousminds.com/2013/01/15/the-role-of-the-court-in-assessing-alternative-medical-treatment/

 

NHS Trust v SR 2012

 

It is worth noting in that case that the Court was effectively resolving a dispute between mother and father as to type of treatment, which is a pure Children Act 1989 decision – specific issue order, the Court’s jurisdiction and authority to make a decision is because there are two parents asking the Court to settle a dispute.  With the King’s, that might become more complex, as both parents are in unity. If they don’t want Ayesha treated in England, it might well be that the Court is invited to borrow from Re A and NHS Trust v SR to set up that in these matters the State can intervene even though the parents understand the medical advice and choose not to follow it.

I hope that all of this gets sorted out without the need for the Court to get involved.  Whatever treatment this sick boy has, he will benefit from having his parents around and their blessing.

 

The role of the Court in assessing alternative medical treatment

 

 A discussion of  An  NHS Trust v SR 2012

 

 

This case made a lot of the national press over the last month, and I wanted to wait for the judgment before discussing it.  It involves a child who is seven years old and has cancer, and a mother who disagreed with the proposed medical treatment and removed him from hospital.  You may recall that the mother and child then went missing, and the High Court took the unusual step of identifying them in the press so that they could be located, and an interim care order was made to convey the child to hospital once the child was found. The mother was prepared to speak to the press and put forward her arguments as to why the proposed treatments were not in her child’s interests.

 

The Court were asked to resolve this dispute and made orders directing that the hospital could undertake the treatment they wished to. 

 

[That decision was made potentially more simple by the parents disagreeing about whether the medical treatment should or should not happen, so the Court were in a position to treat it as a dispute over the exercise of parental responsibility, rather than both parents being adamantly opposed to treatment]

 

[Caveat – although I might well know some of the people who were involved in this case, I have not discussed it with any of them, and the discussion here is purely my own thoughts arising from the judgment]

 

The case can be found here :-

 

http://www.bailii.org/ew/cases/EWHC/Fam/2012/3842.html

 

 

Mr Justice Bodey sets out the factual background very succinctly, and I do not hesitate to steal his construction

 

  1. This is an application by an NHS Trust in respect of N a boy aged 7, who is suffering from a Medulloblastoma, a malignant brain tumour. The consultant paediatric oncologist “Dr A” and his multi-disciplinary team of child cancer experts at the hospital treating him (a recognised centre of excellence) are of the opinion that following surgery he now requires radiotherapy and chemotherapy. Generally speaking such a treatment package has about an 80% success rate, sometimes put at 86%.
  1. N’s father (whom I will call “the father”) agrees with the advice that radiotherapy and chemotherapy should now be delivered to N as soon as possible; as does N’s Guardian from CAFCASS who represents N in these proceedings. However, N’s mother (whom I will call “the mother”) does not consent, believing that there are alternative methods of treatment which should be used and which would avoid or reduce the undoubtedly detrimental long-term side effects of the treatment package being proposed. Since a child is unable to give the necessary consent for medical treatment, such consent is usually given by one or both parents. In law, medical professionals can act on the consent of either parent. However, when the matter is a very serious one and the parents cannot agree, it is accepted that an application will or may need to be made to the court for a declaration that the procedure in question is lawful. That involves a decision as to the child’s best interests, being the court’s paramount consideration. Hence this present application by the NHS Trust concerned to the High Court to determine the issue of N’s treatment following on from his brain surgery.

 

 

It is important to note that this is not a case where the mother was in denial that the child had an extraordinarily serious medical condition, nor one where she was flatly refusing that he should have any form of treatment, but rather that she felt that her reasons for opposing the radiotherapy and chemotherapy were compelling and persuasive, and that she was acting properly as a parent in objecting to them.

 

The Court had to deal with the mother’s reservations about the treatment and her alternative proposals. There was clearly an interesting day in Court where eminent cancer specialists were cross-examined by Queen’s Counsel about alternative therapies.   {The underlining for emphasis here is my own}

 

 

 

 

  1. Yesterday, Thursday 20th December 2012, the court sat again for further consideration and determination of the issue about radiotherapy. Early on, Mr Peddie QC handed up a report dated 19th December 2012 by a Dr D. Usually rules apply about expert evidence, such that the expert’s expertise is checked by the court in advance for its relevance and then his or her report, when prepared, is shared between all parties. Arrangements are made for the experts to meet or speak in advance, so to narrow the issues between them and thus their evidence is able to be dealt with in an orderly way. However, in proceedings of this nature and urgency, that is not always possible and in practice substantial latitude is allowed – although this may make, as here, for a somewhat disorganized hearing. Dr D’s statement makes clear that he is not a medical doctor and he does not purport to be so. His CV refers to him as ‘an internationally acclaimed expert in agricultural, environmental and health sustainability’. His work has focused on diverse issues including ‘the development of natural and sustainable approaches to health care’, and also to ‘the development of sustainable agricultural systems, the reduction of synthetic chemical load among urban and rural communities and the protection of natural ecosystems’. He sets out a number of alternative treatments and therapies which exist, but which I do not need to go through here, and he gives the names and addresses of a number of Harley Street doctors who practise complementary or alternative medicine. Mr Peddie cross-examined Dr A on these various alternative procedures referred to by Dr D, seeking to show that they are worth looking into further, as being actual or possible treatments suitable for N. Dr A dismissed the applicability of all of them here, explaining that they are either experimental, or else used with patients who are already in relapse, or who are otherwise unable to be treated with standard doses of radiotherapy and / or chemotherapy. None of the techniques put to him have, he said, been subjected to the rigorous clinical trials which would need to have been carried out before approving a course of treatment for a child. (The case of an adult is different, as he or she can weigh risks and take his or her own decision as to his or her preferred treatment).
  1. Late yesterday afternoon, Miss Butler-Cole asked the mother in cross-examination about her (the mother’s) folder of material on which she (the mother) was appearing to rely in the witness-box when referring to thousands of children who have survived cancers without mainstream treatment, including radiotherapy. It was arranged that overnight M would chose and produce the two papers or reports which she was putting forward and relying on as being the most supportive of her stated case about the existence of credible alternative treatments. That has been done this morning. Mr Peddie has cross- examined Dr A about her two chosen papers. To put it shortly, neither paper supports the suggestion that there should not be radiotherapy and chemotherapy for N. One of the reports is concerned with studies carried out as long ago as 1987 to 1994, which attempted reduced radiotherapy but which in fact turned out to be rather unsuccessful; and the other paper is actually one upon which Dr A is in any event basing the proposed treatment package for N. Nothing has been produced from the mother’s folder supporting the suggestion that there are Chinese or Russian or other reports which speak to thousands of children surviving cancers without mainstream treatment, including radiotherapy.
  1. The underlying issue is, as I said at the outset, whether radiotherapy and chemotherapy are in N’s best interests? The advantages have to be balanced against the disadvantages (of which there are several and to which I will come back). The “gold standard” orthodox approach contained in the CCLG guidance (the Childhood Cancer Leukaemia Group to which oncologists in this country belong) is that a package of radiotherapy and chemotherapy is necessary to produce optimum survival rates. Much research, investigation and deliberation by cancer experts over decades has determined the minimum dosages to produce maximum survival rates, with the minimum possible detrimental consequences as regards quality of life. Before radiotherapy was developed during the course of the last century, patients who had N’s cancer invariably or almost invariably died in spite of surgery.
  1. Various research papers have been placed before me and have been discussed in evidence. I do not need to descend to the detail of them, although I have read and carefully considered them. One particular statistic was extracted by Mr Tolson QC and is adopted by Mr Peddie QC. It is based on studies of infants (children under three years of age) who were treated by way of chemotherapy alone, that being reasonable treatment for that particular age group, since the detrimental side-effects of radiotherapy for children with developing brains are far worse than they are for children aged around 7, whose brains are that much more developed. Extrapolation from the studies concerned, being in respect of a different age group to N, is not therefore necessarily reliable in any event. The statistics relied upon on behalf of the mother are that with chemotherapy alone, 35% of the infants in the study achieved “event-free” survival at five years (i.e. survival without relapse) which compares with 80% of those who received both radiotherapy and chemotherapy. The statistic for “overall survival” at five years (i.e. the combined total of those infants who had not relapsed plus those who had relapsed) is tabulated as being 67.5%. That appears to compare quite well with the figure of 80% for those infants originally treated with both radiotherapy and chemotherapy (being only about 12.5% lower). However that figure of 67.5% for “overall survival” (set out under the heading ‘chemotherapy only’ in Mr Tolson’s table) in fact includes all those infants who had relapsed after treatment with chemotherapy alone and who had only survived to the five year point by being ‘rescued’ by subsequent radiotherapy and by further (and often more aggressive) chemotherapy. The disadvantages of radiotherapy are much the same whether it is administered as a first-line treatment or as a second-line ‘rescuing’ treatment after a relapse. Thus whatever the statistics may appear superficially to show, there is in fact a significant tested and reported difference regarding the survival rate of infants as between whether they are treated with chemotherapy only, or whether they have both radiotherapy and chemotherapy. Such tests do not exist in respect of children of N’s age because it has not been considered ethical, since radiotherapy began to be used, to treat them without it. There is another all-embracing series of studies which reports on the outcomes without radiotherapy, measured at 8 years on, as being lower still: 27% “event-free survival” and 42% “overall survival”. I add for completeness that the figures under discussion assume treatment starting without undue delay, which is not N’s situation now; his rate is likely to be or may be somewhat lower than it would have been, whether treated with radiotherapy followed by chemotherapy, or with chemotherapy only

 

 

It is fairly clear from that that the medical evidence was strongly in favour of the appropriate course of action for the child being that recommended by the hospital.   (Of course, as we know, today’s medical orthodoxy can become tomorrow’s discredited leech therapy, but the Court have to make decisions on the facts as best they know them)

 

That was one limb, the efficacy of the radiotherapy and chemotherapy as against alternative therapies. The second was comparing the negative consequences of the therapies, and here the mother made more headway

 

  1. I now turn to the disadvantages of the proposed treatment package, in particular radiotherapy. I put it that way because radiotherapy was the live issue when most of the evidence on the point was given on 7th December, 2012, since the mother was not then opposing chemotherapy. Dr A has from the outset acknowledged the existence of the detrimental side-effects on patients which the treatment package recommended by him and his colleagues has. As regards intellectual and cognitive impairment, his evidence was originally that one can expect to see about a 4 point per annum IQ loss over each of the four years after treatment, although it could be less or more. He thought there would be some intellectual detriment from radiotherapy, although said it could be minimal. Subsequent research by him has produced a later paper which suggests a very much less significant decline in IQ. He accepted that radiotherapy would decrease anyone’s chances of ‘growing up to be a lawyer or doctor’, but said that he has treated many patients with this disease using the standard treatment he recommends for N and that they even go to school with some additional help, play sports and do the normal sort of things which others do who have never had the disease. Generally, he said they cope pretty well with the side-effects. He expressed concern that the reduction in cognitive function attributable specifically to radiotherapy has been overstated. He did not consider that there would be any effect on the N’s personality.
  1. As regards hormonal detriment, Dr A accepted that there could be impact to the growth hormone, although he said the progress of the child is monitored and hormone replacement therapy is routinely given. Generally speaking, therefore, any loss of growth ‘…would not be noticed in the street’. As regards the thyroid, Dr A told me that a negative impact is much less common. It can make the patient more lethargic and cause a weight increase, but again this is monitored and is dealt with by tablets. As to fertility, Dr A accepted that there are risks of sub-fertility or infertility. He said that older patients are usually counselled to the effect that ‘…there is a risk of sub-fertility which, at its worst, could mean that you cannot have a child’. Nevertheless, he advises older patients to take contraceptive measures. Further, Dr A pointed out that chemotherapy (which, as I say, the mother was accepting) has a greater role to play in threatening fertility, roughly 60 to 70%, as compared with radiotherapy’s role of perhaps 30 to 40%. As regards the risks of secondary malignancy later on in life, Dr A accepted that such a risk exists. The most common such cancer is benign and therefore normally treatable by surgery. In ‘ballpark’ terms, he placed the risk of later-life cancer (of all types, benign and malignant) at a figure of some 2% to 4%, although the individual might have suffered such cancer in any event. There are one or two other downsides to the suggested treatment which I have well in mind, but do need to go into individually.
  1. I have heard Dr A give evidence at length. He has been a consultant paediatric oncologist for 10 years, with hands-on responsibility for child patients. His knowledge and experience of the subject matter is highly impressive, as would have been obvious to anyone in court. He and his team work at the cutting-edge of this discipline, anxious to keep up with the developing techniques as they are tested and reported on, both here and elsewhere. He told me how the team strives to strike the necessary balance in giving their children treatment which has the best possible rate of survival, but with the least possible detrimental side-effects. Having seen and heard Dr A, I find it hard to see that he and specialists like him would keep back or fail to explain the possible benefits of credible alternative therapies which work, or might work, for such very ill children. He told me of ongoing trials in the USA aimed at further reducing the standard dose of radiotherapy, but explained that these will not be reported upon until about 2016. For the moment, he regards the idea of using chemotherapy alone as ‘a big risk and a big gamble…reducing the prospects of survival by an experiment’. I accept Dr A’s evidence and I reject any suggestion that he has minimised the disadvantages of the recommended treatment package. I find that he has shown dedication to this case and therefore to N’s best interests, devoting much time to it, beyond the call of duty. He has been in court and available to assist throughout the hearings, except during the delivery of this Judgment. He has answered many questions both in court and outside court in writing, some inevitably rather repetitive (due to the change of legal representation) doing so clearly and with patience. I am satisfied that he has done his best to assist the court neutrally and fairly.
  1. The mother, having heard Dr A’s evidence and being asked whether it affected her view on radiotherapy replied that, following upon her many hours of research, she still feels there are other ways to treat N. She told me that to her mind the orthodox view of oncologists is the product of indoctrination. I cannot accept that. I find it on the evidence before me to be the best we have at the present time to deal with what the mother’s own expert, Dr X, described to Ward L J as ‘…a highly malignant disease’, and one which will very probably cause death if not conventionally treated. It may well be that some of the complementary techniques which the mother has in mind, for example as to diet and lifestyle, or as to oxygen therapy, can beneficially be used in conjunction with the mainstream therapy proposed. Dr A said he and his team have no problem with this and can work with parents along those lines, so long as the alternative suggestions do not conflict with or disrupt the primary treatment.
  1. The mother has been through a very stressful time. What the parents have suddenly had to confront over the past two or three months is every parent’s nightmare. I have every sympathy with them; and with the mother in not wishing to see N subjected to the risks and side-effects which conventional treatment carries with it. Her wishes and views as a parent are obviously an important part of the balancing exercise, both in their own right and because of their potential effect on N. But I am worried that her judgment has gone awry as to the extent of the seriousness of the threat which N currently faces. As I have said, she did originally agree to chemotherapy at the hearing on the 7th December, 2012; and, when Mr Peddie made his submissions at the end of this hearing, he spoke of her continued agreement to it, although in her evidence I noted her disagreeing to it, alongside her continuing objection to radiotherapy. During the course of Ward LJ’s judgment at the telephone hearing three nights ago, he observed that “… the mother is becoming increasingly implacable” and I too have the perception that her approach has hardened as these stressful days in court have gone on. It concerns me that she may have become somewhat overwhelmed by the process whilst this case has been in court, which is most unfortunate from N’s point of view. I express the hope that, when she has had time to stand back and reflect upon his best interests, she will come to terms with the court’s decision (as she told me at the first hearing she would) and support him through the very difficult times ahead. N clearly needs both his parents to be pulling together alongside the treating team and nothing could be worse than for him to pick up on any sense of maternal opposition to the treatment.

 

 

The Court had to make a decision, and the decision was fairly easy to predict

 

It will be obvious from the above what I have decided should happen. I accept the submissions of the father, the NHS Trust and the Guardian. The balance of advantage and disadvantage tilts well in favour of radiotherapy and chemotherapy, notwithstanding the detrimental side-effects. One cannot enjoy even a diminished quality of life if one is not alive. I shall therefore make a Declaration that the treatment package proposed by the NHS Trust is lawful.

 

 

 

There was then an issue about whether that should be a final decision, or whether the treatment should commence but be reviewed, with mother having an opportunity to fully assemble her evidence of the case both for her alternative therapy/treatment and against chemotherapy and radiotherapy  {Again, underlining for emphasis is my own}

 

 

  1. The question then arises as to whether this should be a final decision, or whether I should give the mother a further opportunity to marshal and call expert evidence on complementary or alternative treatments. The time for everyone to prepare for this case has been short and she clearly has her Article 6 right to a fair hearing. I am very conscious that she feels catapulted into this litigation, without proper time to get her case together. It is however the fact that the mother has been fully aware since early November 2012 about the opinions of the treating clinicians that N requires radiotherapy and chemotherapy. She herself mentioned today having ‘done a crash course on the issue over the last 6 weeks’ and she spoke earlier of having ‘numerous people working on it’. On both the 3rd December and 4th December 2012, Hogg J gave her permission to call expert evidence, although I accept that the mother’s having gone missing with N that week made it impossible in practice for her then legal team to do much about that. On the 13th December, 2012, by an e-mail order, I gave the mother further permission to call an oncologist. It is now clearer, with the emphasis at this hearing on entirely complementary therapies, that that may not have given the mother exactly what she may have wanted; but my order also gave her ‘liberty to apply urgently to seek further or other directions’. That was some eight days ago. The mother has had representation by and advice from Leading Counsel and solicitors since before the 3rd December 2012, as Mr Tolson QC prepared a robust Position Statement on her behalf for the hearing before Hogg J of that date. She changed her legal team during the hearing on Tuesday of this week (the 18th December 2012) and it follows that her current legal team has struggled to read into the case and to get very much together to support her position in the time available. She has referred several times to research from and treatments available in Russia and China and elsewhere, which research she has not been willing to pass across to the NHS team, although asked by them to do so, for fear (as Mr Peddie put it) that she might be seen as seeking support ‘from quacks’. Mr Peddie submitted today that the mother’s search has been hampered by the S.4 of the Cancer Act 1939, which prohibits the advertising of cancer services; but on her own case the mother has been able to carry out much research on the internet, which anyone can do without difficulty. Dr D set out in his report of 19th December, 2012 a list of Harley Street doctors who he says offer complementary medicines; but nothing has been heard from any of them.
  1. I have to keep firmly in mind what is required for there to be any realistic prospect of the court’s preferring some complementary alternative to the standard mainstream treatment for N’s condition. It is not just a question of demonstrating that there is research and experimentation going on out there; nor that there are ideas and possibilities being floated, nor even that there are reported success stories of cures occurring without the use of radiotherapy and / or chemotherapy. What is required is the identification of a clinician experienced in treating children aged about 7 having this kind of brain cancer; a clinician with the access to the necessary equipment and infrastructure to put the suggested treatment into effect and able and willing to take over the medical care of and responsibility for N. As Ward LJ said at paragraph 38 of AVS v NHS Foundation Trust [2011] COPR Con. VOL. 219: “… if there is no one available to undertake the necessary operation, the question of whether or not it would be in the patient’s best interests for that to happen is wholly academic…”. The treatment proposed by any such clinician would have to be (or should preferably be) properly studied, tested, reported on and peer-reviewed. To have any realistic prospect of becoming selected by the court (and I repeat that this is not a decision to be made by an adult for himself, but for a child) the proposed plan would have to have a prognosis as to probable survival rate not much less than (and preferably equal to) the sort of survival rate achievable through the use of the orthodox treatment universally applied at present by oncologists in this country.
  1. Giving the mother a review hearing date after Christmas, or just a “liberty to apply ” provision in my order, would also have an incidental downside to it. This is because everyone working at the hospital with N should ideally be able to go forward with as much certainty and confidence as possible that the necessary decisions have been taken. They need to be able to get on with making the necessary booking arrangements for the equipment, making the restraining mask and planning their commitments. They need to be able to prepare N with play-therapy which is able to be confidently delivered, and not in some half-hearted way because they are aware that the radiotherapy might never happen. It is not in N’s interests that everything should be ‘semi-on-hold’ awaiting notification after Christmas or in the New Year as to whether or not there is still to be further litigation. Whilst recognising therefore that the mother’s right to a fair trial is absolute, I am satisfied in all the circumstances (i) that she has had a sufficient opportunity overall to put forward a case for complementary treatment for N and (ii) that it is not unfair for this decision to be taken today, without there being any pre-ordained opportunity for her to apply at a further hearing after Christmas. Obviously, in any case involving the best interests of a child, a dramatic change of circumstances would enable a party to turn to the court, but that is not something for which I consider I should specifically plan.

 

 

I found these passages to actually be the most interesting in the judgment. The suggestion here is that it is appropriate for the Court to rule in favour of mainstream treatment unless a parent can show that the prognosis and survival rate in terms of the alternative treatment is “not much less than and preferably equal to the orthodox treatment universally applied by oncologists in this country”

 

The reasoning behind that is that the Court is looking not at the decision of an adult to make an informed decision about treatment for themselves, but on behalf of a child. Where the adult is aware that the treatment for themselves may not be as efficacious as the treatment they are rejecting, they are taking that decision for themselves and are entitled to more leeway in making a decision that other people might not make for themselves.

 

This does seem to me, to set the bar quite high, and perhaps does not fully take into account that there is more than simply the efficacy of treatment, there is also the negative impact of the treatment on quality of life, pain, discomfort etc, that a parent might legitimately want to shield the child from.

 

To put it this way

 

If  Treatment A has a score out of 100 (1 being bad, 100 being good) of

 

Prognosis  85     Patient comfort   20

 

 

And Treatment B has the scores

 

Prognosis  60  Patient comfort 65

 

 

And Treatment C has the scores

 

Prognosis 5  Patient Comfort 100

 

Well then a great many parents might well decide that the only factor that matters to them is prognosis, the survival chances of their child and Treatment A is obviously the right one. But others might well say that with both treatments, there is some chance that the child won’t survive and they don’t want the child to be in pain or distress during the treatment, so they would prefer Treatment B. 

 

It would seem fairly easy to reject Treatment C as simply not being good enough at treating the condition, and so there’s a point at which lower prognosis for higher patient comfort stops being a valid trade-off. I’d suggest that opting for Treatment C would be an unreasonable decision, if A and B were instead available for the child   [though it would be a viable decision for an adult to make for themselves].   Treatment C might for example, be sugar pills, which would have themselves no adverse impact on the child, but do very little for the actual condition itself.   [cough, homeopathy, cough, cough]

 

It might be that the average parent would go for Treatment A, but would a parent going for Treatment B be manifestly wrong, to the extent that a Court should intervene?

 

These numbers are of course plucked out of the air, I have no idea what evidentially the mother might have been able to produce that would show the prognosis on her proposed model of treatment, or the comparisons of pain, side effects, discomfort.

 

 

But I am a little troubled that this case, with those fictitious numbers above, would mean that a parent could not plump for Treatment B, because the prognosis is not  “not much less than and preferably equal to the orthodox treatment universally applied by doctors in this country”  

For the avoidance of doubt, I think the Court made the right decision in this case, and that there simply wasn’t the compelling evidence presented to them to diverge from the very clear and strong medical opinion that this child needed urgent and orthodox medical treatment;   and that the State has to have power to intervene where a parent ignores that medical advice and is seeking to provide treatment which is untested, or crackpot.  But is there some room in the middle where a parent can choose between two valid treatments, one of which is less efficacious than the orthodox one?

 

I always get worried, as a bleeding heart liberal, when parental autonomy is eroded. In this case with this evidence, choosing between what mum wanted and what dad wanted, was very straightforward, but that construction that a parent seeking to provide unorthodox or alternative therapy for a child has to show that the prognosis is as high as the orthodox treatment seems to me to set a very high bar, and to not fully take account of the other factors than prognosis that might properly influence a parent.