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Evaluating the findings of the ruling against the Tavistock and Portman NHS Trust compared with GenderGP’s approach to treating trans youth.

The recent determination states, ‘A child under 16 may only consent to the use of medication intended to suppress puberty where he or she is competent to understand the nature of the treatment.’

 

There is a key question on everyone’s minds:

‘Does the recent ruling apply to prescribing puberty blockers in young people in a general way or to the way that GIDS policy and protocol operates?’

 

This article seeks to demonstrate how GenderGP’s approach, which is grounded in international best practice and guidance issued by leading centres of excellence worldwide, compares with that of GIDS when it comes to the treatment of trans youth.

 

Key Points:

  1. GenderGP follows International Guidelines followed by worldwide centres that prescribe blockers to under 16s without a court order, rather than the in-house protocols that are used by GIDS.
  2. GenderGP process and protocol enables young people to understand and consent to each step of medical intervention separately rather than all patients having to have blockers for a period of time, directly followed by a set age for hormones.
  3. GenderGP facilitates psychological intervention at a time when it can be used effectively, rather than having to have it for at least six months prior to any referral for medication. Patients are able to make informed decisions about their care without being in a state of distress that may cloud judgement.
  4. GenderGP understands that, for a trans person, the effects of not having intervention are just as serious, life-changing and long-term as having treatment.
  5. GIDS treatment protocols leave cause for concern that adolescents following their pathway experience their core teenage years without puberty. If they are prescribed blockers at a young age they then have no access to natal or gender-affirming hormones until the age of 16.

 

Guidelines

There are no NHS published guidelines on the treatment of transgender patients, and notably no NICE guidelines. This means that GIDS used their own Service Specifications, which they formulated, as the basis of their care provision.

GenderGP has always followed the International Gudielines of WPATH, The Endocrine Society, UCSF Center of Excellence for Transgender Health and Australia’s Standards of Care for trans and gender diverse children and adolescents, in making treatment recommendations, and is able to provide well-balanced information on the risks and benefits.

 

Stages of Treatment

GIDS patients are all prescribed blockers and then all seemingly move on to hormones.GIDS were unable to produce numbers of young people who did not follow this path. This means that at the stage they are prescribed blockers they should also have been consenting to hormones, and their associated long-term effects, something the court felt was a large ask for a young person.

GenderGP understands that some patients need blockers, some need hormones and some need both, and can produce data to show the associated figures. Each element of treatment is managed separately and consented to separately, allowing the young person to consent to and understand each phase of treatment in its own right.

 

Psychological Intervention

The court heard how the GIDS process is to undertake psychological intervention prior to a referral for blockers and therefore as stated in the determination: “the Trust endocrinology clinicians are faced with a child in acute distress with no alternative treatment options.” This leaves open the question as to whether that distressed young person can adequately understand enough to consent.

GenderGP, and other centres, prescribes blockers when needed, to alleviate the distress of progressing puberty and then works to support any psychological needs. This means that all treatment options including stopping treatment, continuing blockers, hormones, psychological therapies – can all be introduced at any time they are indicated and the young person’s distress is minimised enabling them to think clearly when consenting.

 

Reason for Blockers

GIDS told the court they prescribe blockers ‘to give the young person time to think’. Referrals for hormones only take place after a waiting time of over two years and then an assessment period of six months or longer. The court heard that by the time the patient reaches UCLH or Leeds, they can be so distressed by puberty, that they may be unable to think clearly. This clearly has an impact on their ability to understand enough to give consent.

GenderGP and other centres of excellence, prescribe puberty blockers to suspend pubertal development and body changes. This then alleviates distress, allowing time and space to consider the next stages of treatment, or reverting to their natural puberty if that is their wish. Blockers are also used as an adjunct to hormones to reduce natural hormone production.

 

Age for Hormones

GIDS uses puberty blockers in a very different way to GenderGP. All GIDS patients seeking hormones are prescribed blockers and must be on them until at least the age of 16. That means that if they start at age 10, as some patients do, they will be without hormones, or any pubertal development for over five years. Even patients aged 16+ at the time of entering GIDS need to be on blockers for a year before they can access hormones.

GenderGP allows trans youth to start puberty in line with their gender identity when they are ready, at an age appropriate to their psychological development and maturity. This means that there is not an automatic risk of a protracted period of childhood and adolescence without the experience of puberty. Additionally, the knowledge that they will be able to start gender-affirming hormones when ready, rather than having to wait until a specific age, relieves distress and facilitates information sharing and gathering.

 

Pubertal Development

GIDS does not allow gender dysphoric youth to experience the puberty associated with their gender identity. Patients either experience no physical or psychological development of puberty until they are prescribed hormones after the age of 16, or they have to go through the physical and psychological puberty associated with their birth assigned gender.

In line with current international guidance and practice in Centers of Excellence, GenderGP allows a gentle introduction of the puberty that fits their gender identity, which can be started at any time that it is deemed that the young person can understand the implications both of doing so, or not doing so. This can be stopped, paused or resumed at any time, before life changing body developments occur.

 

Parental Consent

GIDS does not allow any young person to consent on their own without their parents. This implies that their treatment protocol is not medically necessary and it doesn’t matter if they have to undergo the body changes of a natural puberty. They would not apply to the courts for assistance if there was a mismatch between the patient and parent’s wishes, in case it caused ‘family frictions’.

GenderGP understands that young people can have the capacity to consent to their own treatment and that to not have treatment in the case of a gender variant individual is as significant, life changing and serious, as having treatment.

 

Medical Condition

GIDS does not carefully balance the effects of treatment versus no treatment. The court took this to imply that this is not a medical condition in its own right that required intervention. One that has severe, life changing consequences if treatment is not given. Rather, they inferred that it is a treatment to address identity rather than medical need.

GenderGP understands the severe consequences of a transgender youth going through the body changes associated with a puberty that could have been suspended. The physical and psychological long-term effects of this are significant and can lead to reduced life satisfaction scores, permanent mental health damage, and the need for surgical intervention later in life.

 

Information

GIDS patients are assessed by the Tavisotck and it is they who give the young person all the psychological and physical information about the blockers. Following this process, patients are referred to UCLH who reinforce the information and recommend the blockers which the GP will prescribe. The Tavistock literature and evidence to the court stated that they were unsure of the long-term effects.

GenderGP’s team of multidisciplinary specialists all work together in the same organisation to provide appropriate information and care at the right time. It can follow that blockers are given at the start of a journey, or part way through or not at all, and this can be continually monitored and adapted. Any risks are clearly laid out in line with International best practice.

 

Long-Term Effects

GIDS’ information for patients, and their clinicians, states that they are unaware of the long-term effects of blockers. There seems to be no mention of the long-term effects of not having treatment.

GenderGP uses evidence-based, published medical guidance to explain the known wanted and unwanted effects of the treatment and of going through a puberty which is out of line with a person’s gender identity. Age appropriate information is given to the young person and family about all the evidence-based known effects, both positive and negative.

 

Waiting Times

GIDS have waiting times of over two years, meaning that patients can be very distressed by the time they are able to receive treatment. This can have effects on their ability to take in and understand the relevant information.

GenderGP does not have a waiting list and a patient can start the treatment that is right for them, which may be blockers, in time to prevent the distress caused by irreversible body changes.

 

Bone and brain development

GIDS does not allow young people on their Early Intervention Study to have hormones until the age of 16. This protracted time without hormones can have a detrimental effect on bone density, and also leaves a large period of teenage years without any pubertal psychological development.

GenderGP understands the importance of hormones on bone development and psychological development during adolescence, and prescribes hormones when the patient is ready and able to understand that phase of treatment.

 

Autistic Spectrum Disorder

The judge found it surprising that GIDS could produce no data on how many patients had ASD as well as being gender incongruent and whether that impacted on capacity to give consent.

GenderGP holds and analyses such data and supports patients and their families in understanding the consequences of making difficult decisions, while understanding that withholding treatment is just an active decision as providing it.

 

Outcomes

GIDS was unable to produce any data to the court to show that its treatment protocols alleviated distress in patients it had treated.

GenderGP continually collects data on life satisfaction, improved mental health measures and harm and suicidality. This follow up data is used to continually monitor and manage treatment plans and the need for immediate support or counselling.

 

Discharge from Care

The court felt that the GIDS policy was to give more and more information until treatment was given, or the patient was discharged from care.

GenderGP facilitates long-term follow up regardless of treatment plan, and has a policy of being available for questions and queries for as long as the patients need it.

 

Response Times

It is unknown how long a patient would wait for a follow-up session with a counsellor or therapist at GIDS if there was a young person with questions or who was in distress. Anecdotally, there are many months between pre-set follow-up appointments.

GenderGP responds to queries within 24-48 hours and appointments with counsellors are available within 48 hours.

 

Persistence

Robust GIDS data should have been able to allow clinicians to show whether the fact that all patients moved from blockers to hormones was because the diagnosis was correct, or because the blockers in some way encourage gender incongruence to persist. This was not the case. Additionally, GIDS own Service Specifications and clinicians raised concerns over desistance that caused concern for the court.

GenderGP agrees with the other worldwide Centres of Excellence, that once a young person reaches puberty and still has marked feelings of gender incongruence, this is likely to be permanent. Furthermore, this must be balanced with the harmful effects of withholding treatment to a majority group in order to prevent theoretical harm in a minority group.