My jaw dropped as I read it and when I got to paragraph 44....well. Paragraphs 58 and 59. Paragraph 60. Paragraph 73. On and on goes the litany of negligence and wilful blindness - tying in with what InvisibleDragon says above about the lack of good faith.
The concluding paragraphs - 134 onwards - are really clear and also devastating.
44. The court asked for statistical material on the number, if any, of young people who had been assessed to be suitable for PBs but who were not prescribed them because the young person was considered not to be Gillick competent to make the decision, whether at GIDS or the Trusts. Ms Morris could not produce any statistics on whether this situation had ever arisen. She suggested that in the main, GIDS would work with the young person to give them further information, discuss the matter further and in some cases wait until they had achieved further maturity. The court gained the strong impression from the evidence and from those submissions that it was extremely unusual for either GIDS or the Trusts to refuse to give PBs on the ground that the young person was not competent to give consent. The approach adopted appears to be to continue giving the child more information and to have more discussions until s/he is considered Gillick competent or is discharged.
It looks very much like there was no such assessment and the default position was to presume competence was at a sufficient level. The lack of monitoring of this strengthens the idea that little or no concern was given to capability on the basis of age/maturity. Its a massive oversight which exposes the service to some pretty big questions.
58. We were told that the defendant did not have any data recording the proportion of those on puberty blockers who progress to cross-sex hormones. We were told that in part this resulted from the fact that some would have progressed to adult services and would not be recorded by the defendant. Ms Swarbrick had carried out an analysis of a random sample of 312 of 1648 files of patients discharged from GIDS from 1st March 2019 to 4th March 2020. Dr Carmichael summarised this as:
“…based on a random sample of those referred to GIDS who had been discharged or had a closing summary from GIDS in 19-20 (analysis B) 16% of patients (49 individuals) had accessed the endocrinology service during their time with GIDS. Of those 16%, 55% (27 individuals) were subsequently approved for or accessed cross-sex hormones during their time with GIDS. This number represents 8.7% of all the patients discharged from GIDS that year. We also know that of the 49 patients who were referred to endocrinology for GnRHa whilst at GIDS, two did not commence GnRHa treatment, and a further five were discharged from GIDS without being referred on to another gender service.”
59. We find it surprising that GIDS did not obtain full data showing the figures and the proportion of those on puberty blockers who remain within GIDS and move on to cross-sex hormones. Although neither Dr Carmichael nor Professor Butler could give the equivalent figures in the United Kingdom to those from the Netherlands, the language used in their witness statements suggests that a similarly high proportion of children and young people in the United Kingdom move from PBs onto CSH.
The impact of Puberty Blockers and their reversibility
60. Both WPATH and the Endocrine Society in their documentation describe PBs as fully reversible. Professor Butler says that “we do not know everything about the blocker and as far as we know it is a safe reversible treatment with a well-established history.” Dr Alvi also referred to the history of the use of PBs as showing that they are fully reversible. However, it is important to note that apart from the Amsterdam study, the history of the use of PBs relied upon in this context is from the treatment of precociouspuberty which is a different condition from GD, and where PBs are used in a very different way.
So far from the position that puberty blockers were fully reversable it looks to the contrary. But worse than that the clinic can't say this either way because they never monitored whether puberty blockers were reversable because they never followed up and checked even though they were telling patients and their parents they were fully reversable.
This means it was impossible for anyone involved to make informed decisions. From clinicians, to parents, to patients.
They were experimenting, but worse than that they weren't actually coming up with any conclusions because the drug use was never monitored for effectiveness or problems later on. Its therefore difficult to argue that these drugs were being used in an experimental way. They were just being administered without thought to consequences down the line to current patients and without thought to future patients.
73. The Evaluation Paper on the Early Intervention Study at GIDS, referred to in para 25 above, gives some (albeit limited) material on the outcome of that study. It summarised a meeting paper presented by Dr Carmichael and Professor Viner in 2014 (but not published in a peer review journal) as follows:
“The reported qualitative data on early outcomes of 44 young people who received early pubertal suppression. It noted that 100% of young people stated that they wished to continue on GnRHa, that 23 (52%) reported an improvement in mood since starting the blocker but that 27% reported a decrease in mood. Noted that there was no overall improvement in mood or psychological wellbeing using standardized psychological measures .” (emphasis added)
So what evidence there was, didn't seem to support the idea that the drug had any meaningful improvement for the patient but given there were side effects, harm was actively being done without benefit.
This isnt even about the capacity of patients to consent. This is into clinical malpractice and ethically dubious conduct and procedure which children have been caught up in. This is significant.