England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

		Royal Courts of Justice
		17th December 2013

MR JUSTICE HOLMAN:

1. Last Thursday, 12 December 2013, I heard the first day of this case. At the end of that day I was constrained to adjourn it part-heard until today, Tuesday, 17 December 2013, for reasons which I gave in a judgment which I delivered publicly on Thursday, 12 December 2013. That judgment is now publicly available on the Bailii website under neutral citation number [2013] EWHC 4043 (Fam). The purpose of that short judgment was essentially to explain why at that stage I was imposing a temporary, but total, blanket injunction upon any reporting whatsoever of these proceedings or anything that had occurred within the courtroom that day. The essential reason for that was that I was not satisfied last Thursday that the parents of the child concerned had been fully and appropriately served with notice of these proceedings nor engaged in them; and it was extremely important that they should not accidentally learn of these proceedings for the first time by hearing something on the wireless or reading something in a newspaper or some website.
2. The present judgment relates to the same proceedings and the same child, TM. Once again, I have sat in public throughout those parts of today when I have actually been in court on this case, and I am delivering this judgment publicly. Anything and everything which I may say is capable of being reported at once. This judgment will be transcribed and placed upon the Bailii website just as soon as that process can be completed.
3. The proceedings concern a child, TM, who is now aged 7. She was born prematurely. She has cerebral palsy and a number of related medical and developmental complications. I wish to stress at the very outset of this judgment that she normally lives at home with her mother and is cared for by her mother. Nothing that I have read or heard during the course of these proceedings suggests or indicates at all that her mother is anything other than a very loving mother and a very competently caring mother. Her father lives separately from the mother, but is also engaged in the life and upbringing of TM. She is clearly a very much loved child, both by her family and indeed by the medical staff, some of whom have helped care for her over a long period of time.
4. As a result of her range of medical complications and disabilities, TM is non-ambulant, that is to say she cannot walk at all. She has to be assisted from a bed to a wheelchair. She has little or no use of ordinary language. She does smile and display emotions and clearly has awareness of the important people in her life, but she has little control of her muscular movement and, in those circumstances, it is not easy fully to understand her levels of cognition and understanding. She does attend a special school. She is in any event, as I have already said, only aged 7.
5. The most relevant aspect of her medical complications for the present case is that she lacks the normal capacity to swallow. As a result, she has, for all or most of her life, had to receive hydration and nutrition by the use of artificial measures and devices. In particular, she has for a long time been fed through a nasogastric tube, that is, a tube which is inserted through her nostril, down into her body. In her case, feeding by nasogastric tube has carried, or potentially carries, problems. The tube needs frequently to be replaced. That is a painful and distressing process for her. There is always the risk of a nasogastric tube being mistakenly passed into the windpipe, with potentially catastrophic consequences if nutrition passes unintentionally into her lungs. Further, in the long run, use of a nasogastric tube can be psychologically distressing for the child or her carers because it is constantly visible on her face. Additionally, TM has not been receiving sufficient nutrition by this means, and she is currently of very low weight and small stature relative to her chronological age.
6. There is another problem or complication, which is that for some reason, which is not yet fully understood by her treating doctors, her stomach does not process or absorb the nutrition in the way it should do. As a result, there is a need to feed her not only enterally but parenterally, that is, directly into her intestine.
7. Throughout her life TM has received treatment and care at Great Ormond Street Hospital; and for many years she has been under the care specifically of a paediatric surgeon there, Mr JC FRCS. Because of the range of difficulties with feeding by the nasogastric tube that I have described, and her increasingly low weight relative to her chronological age, Mr JC began to advise the parents that it would be appropriate and in the best interests of TM to undergo a gastrostomy. At its simplest, a gastrostomy is the insertion of a tube or pipe through the skin of the abdomen, through the tissue underneath and directly into the stomach itself. The advantages of a gastrostomy are that the child (or person) concerned can be nourished and hydrated directly into the stomach, and a nasogastric tube, with its disadvantages and limitations, can be dispensed with altogether.
8. Clearly, the first insertion of a gastrostomy is a major and invasive procedure. It involves making an incision through the abdomen into the stomach. It must be performed under general anaesthetic.
9. After full discussion with Mr JC, the parents were in agreement and gave their consent to performing and inserting a gastrostomy. I mention, for the technically minded, that the doctors had hoped initially to fit a form of gastrostomy known as a Freka, but they were unable to do so because her intestine was distended. Instead, they initially inserted a different type of gastrostomy known as a malecot catheter. It was never intended that the malecot catheter should remain in place for very long, for that particular device is not designed or intended to do so.
10. The mother agreed also to a peripherally inserted central catheter (a PICC) being inserted. This is a line or pipe or tube which is inserted through the neck into a vein and passed into the heart, also for the purpose of nutrition. The first such PICC became the site of an infection and had to be removed.
11. At that point the parents, and in particular the mother, became resistant to the insertion of another PICC and more generally resistant to further procedures being performed at Great Ormond Street Hospital. As I understand it, the mother was concerned that the first PICC had become the site of infection and was also understandably anxious and concerned at the evolving consequence that TM was detained in hospital rather than being discharged home. It is clear that tension developed into what had previously been a good working relationship between the hospital and its staff, on the one hand, and the parents, but in particular the mother, on the other hand. This came to a head in an episode on 2 December 2013. I only have very sketchy information about that episode and I am very aware that there are no doubt several sides to the story. For that reason, I do not intend to say any more about it in this judgment, for it is not directly relevant to the current treatment decisions, although it tends to explain why it is that court proceedings became necessary.
12. At all events, following the episode on 2 December 2013, the hospital felt it necessary and appropriate, at any rate for a period, to exclude the mother from visiting the hospital; and clearly a situation of some "stalemate" arose with regard to further treatment. There was, therefore, a without notice application to this court on 3 December 2013. After a relatively short hearing that day, Mr Justice Mostyn made a declaration to the effect that it was in the best interests of TM for a further PICC to be inserted and also for there to be an order that she must not be removed from Great Ormond Street Hospital for the time being.
13. The case then came before me again last Thursday, 12 December 2013. On that occasion the hospital was present and represented, as was CAFCASS, as guardian for TM. However, neither parent was present nor represented. I had considerable anxiety and misgivings as to whether each parent had been adequately served or engaged in these proceedings. Documents had undoubtedly been sent to the address of the mother, but only posted through the letterbox there the previous day. There was uncertainty as to the current reliable address for the father. It has since clearly emerged that the mother did receive, on the day before that hearing, an envelope containing the relevant documents but, for reasons of her own, she chose not to open it at that stage.
14. It was necessary for me to hear evidence from Mr JC last Thursday so that I had a clearer understanding of the proposed future treatment and as to the urgency for it. But in the light of that evidence, it seemed to me appropriate to adjourn this case part-heard until today, which I did. The main reason was to ensure that full service was effected on both parents and, if at all possible, to see if a consensual outcome could be achieved by sympathetic discussion with the parents.
15. It suffices now to say that between then and now the mother clearly has been seen and given the relevant documents. She has instructed a solicitor, who in turn has instructed counsel, Mrs. Judith Trustman. I have been enormously grateful to Mrs. Trustman for all her help and sensitivity during the course of today. The mother herself chose not to attend today, saying that she feels unwell. The father has not attended today. However, I broke off for an appreciable period during today, during which a telephone conference was established between the three counsel, Mr JC and the Roman Catholic chaplain at Great Ormond Street Hospital, all speaking at this end, using three-way equipment in the courtroom, and the mother and the father personally, and also the mother's solicitor, speaking from the mother's home in London. As a result of that telephone conference, and no doubt the clarification of a number of issues, there is now a substantial measure of agreement.
16. Currently, TM is fitted with a balloon button gastrostomy. This is a device that is inserted through the skin of her abdomen and the layers of tissue beneath into her stomach, and a small pipe or tube protrudes a short distance into her stomach. The problem with the balloon button gastrostomy is that it merely passes the supplied nutrition directly into the stomach itself where, as I have already described, for some reason it does not get properly digested or processed or absorbed by TM's stomach. She is, therefore, still very dependent upon the PICC and also upon intravenous nutrition to feed and hydrate her.
17. What the hospital and Mr JC wish to do is substitute for the balloon button gastrostomy a different but similar device, known as a gastrojejunal tube or GJ tube. This is very similar to the existing balloon button gastrostomy except that it is thicker and also considerably longer. The tube of the gastrojejunal tube is about 30 to 40cms long. What happens is that the gastrojejunal tube is inserted through the aperture that now already exists in her abdomen, into her stomach; but instead of terminating in the stomach, the rather longer tube is pushed down through the orifice at the bottom end of her stomach into her jejunum, which is the second part of the small intestine. The point and purpose of substituting a gastrojejunal tube is that the supplied nutrition and hydration, instead of passing simply into the stomach where, for some reason, it is not processed properly, is actually passed directly into the intestine itself, bypassing the stomach altogether. The hope of the treating doctors is that if a gastrojejunal tube is substituted for the balloon button gastrostomy then TM will be adequately nourished and hydrated through it. It should then be possible to remove the PICC and the intravenous feeding line, and to move on altogether from nasogastric feeding.
18. Before a GJ tube can be substituted for the balloon button gastrostomy there would have to be a general anaesthetic. It would be painful for TM to remove the gastrostomy and insert the GJ tube, in part because the GJ tube is thicker than the balloon button gastrostomy and so her skin and tissues would be stretched (but not cut) at the point of insertion. Mr JC anticipates general anaesthesia for between 15 and 45 minutes. Of course all anaesthesia carries some risk. All that can be said in the case of TM is that she has already undergone general anaesthesia on three recent occasions. She had no serious side effects from any of those occasions of general anaesthesia, and she recovered well from the anaesthesia.
19. So what the hospital seek by these proceedings is, first, to be able to substitute the GJ tube under general anaesthesia for the balloon button gastrostomy; and, second, and after that, to be able to carry out various gastrointestinal investigations, including by endoscopy, in order to try to find out why her stomach appears not to be functioning normally.
20. If, and insofar as, it is still really necessary for me to do so by this stage of this day, I have no hesitation, on the basis of the evidence that I have read and heard from Mr JC, in declaring that it is in the best interests of TM that she should undergo the removal of the current gastrostomy and the insertion of a GJ tube, and then undergo investigations to try to establish why her stomach appears not to be functioning normally. As I have said, further general anaesthesia is involved and that should never be undertaken lightly, but, as I have also said, the history of recent general anaesthesia upon her is that it has had no serious ill effects and she has recovered well.
21. So far as the procedures themselves are concerned, this really boils down to substituting one form of inserted gastric tube for another. It is true that the GJ tube will be a little thicker than the existing gastrostomy, but no additional incision is required, merely some stretching of the skin and tissues. Of course, the GJ tube has the longer tube at the end of it, but the very purpose of that is so as to penetrate through the stomach into the small intestine (through the natural orifice) to enable her to feed better. In the circumstances, this seems to me to be a relatively minor invasive procedure, given that there is a gastrostomy already in place. It potentially carries the considerable benefits that the PICC can be removed altogether, and with it the associated risk of infection, and that she can move on from nasogastric feeding.
22. So I am really in no doubt that the proposed procedures potentially carry considerable advantages to TM and few, if any, disadvantages, and that it is clearly in her best interests that they should take place. I will, therefore, make declarations in terms that have been carefully drafted and discussed to that effect.
23. But I am pleased to record that as a result, in particular, of the telephone conference that took place over an appreciable period of time today, there is now a much greater degree of consensus between the parents themselves and the hospital. I have been told, although I have seen nothing in writing, that the father, Mr M, has expressed his full and unqualified agreement or consent to the proposed procedures. I have been told that the mother also now gives qualified agreement or consent to the proposed procedures. She is entirely content that they should happen. Her qualification or reservation is that she has asked that there be a condition that Mr JC plays no part in them. I, for my part, do not regard that as an acceptable stipulation in the circumstances of this case. It is, of course, always extremely important that there is a good, collaborative working relationship between the parent of a patient child and the treating doctors and medical staff. It is very sad indeed that currently the mother is expressing some lack of confidence or trust in Mr JC. That may, I stress "may", stem in part from a difficult meeting between them on 2 December which led on to the episode that I have touched upon. But objectively there is not the slightest reason to doubt the competence of Mr JC, nor the wisdom of his medical judgment and advice. No doubt in an extreme situation a parent may have a right to seek that her child is removed to a different hospital altogether, for the treatment to take place there. I am glad to say that it has not come to that in the present case. The stipulation of the mother is merely to the effect that Mr JC should not be involved. But it is not, in my view, tenable or acceptable that a child be treated at a given hospital and then, in the absence of some very clear and good reason, for the court, or indeed a parent, to stipulate by whom the treatment should be carried out. TM has been entrusted to the care of Great Ormond Street Hospital throughout her life. She is currently an inpatient there, and neither the mother nor the court should presume to dictate to the hospital by whom medical procedures are carried out at the hospital.
24. So I will make declarations in the terms proposed, with no condition whatsoever that Mr JC is not involved. Indeed, paragraph 3 of the proposed order will expressly say that "such investigations may be determined by Mr JC FRCS or any doctor to whom he delegates her care". But I do wish clearly to record that, in parallel with the declarations of the court, the father has in any event (as I have been told) given his own agreement and consent to what is proposed; and the mother also has done, subject to that one qualification. So for those reasons I will make a substantive order in the terms that have been discussed.
25. I made very plain last Thursday that the blanket injunction that I imposed on that day would last only until today, for the reasons given in my judgment last Thursday. Starting today, there will be a reporting restriction order in terms that have also been carefully considered and drafted. TM is, of course, entitled to the same confidentiality with regard to her medical conditions and treatment as anyone else. Even in this judgment I have had to give some information about her medical conditions and treatment. For that reason, she is clearly entitled to protection from being identified in any way as being the person who is the subject of this judgment and order. There will therefore be a reporting restriction order that prevents any identification of the names of TM herself or her parents or relatives and of the medical and other staff caring for TM. However, Great Ormond Street Hospital have not pressed for the scope of an injunction to extend as far as prohibiting identification of Great Ormond Street Hospital as being the applicants in these proceedings and the place at which TM is being treated. I am satisfied that there has been full compliance with the prescribed procedure for service of the application for a reporting restriction order upon the Press Association Copy Direct Service and, separately and specifically, upon BskyB. I am satisfied, as section 12 of the Human Rights Act 1998 requires, that there has been proper service of the application for a reporting restriction order. For those reasons, there will be a reporting restriction order in the terms that have already been announced.
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