Written evidence submitted by Mermaids to the Transgender Equality Inquiry
Produced by Mermaids, with specific interest in the care and experiences of trans children and adolescents. Parents and young people have contributed individually.
The issues we have addressed are summarised as below:
Mermaids frequently quote the Equality Act, primarily to schools unwilling to accommodate trans children. Antithetically, a young person of 16 wanted their name changing at school but their parents did not consent to this. Although the Equality and Human Rights Committee found the schools refusal to comply was discriminatory, they could not proceed with action against the school as the young person was under 18.
Recommendations:
Annually the portrayal of trans youth in the press has improved however the press still:
Recommendation:
Anecdotal evidence shows an increase in hate crime incidence following such publications.
2) NHS services for children and young people (trans youth)
Frontline care:
The majority of health professionals lack knowledge regarding trans youth, most know nothing about gender dysphoria and frequently misinform parents of their options and rights. Mermaids regularly counsel parents whose GP’s refuse to refer children to gender services, CAMHS are overstretched and often equally ignorant.
Recommendation: Commitment to providing:
Gender identity service for young people:
Many families are deeply unhappy with the care provided in the specialist gender service.
A large proportion of young people accessing gender services are being failed. Those already in puberty or approaching the age for referral to adult services are receiving inadequate or no care, and many are reporting care they feel to be negligent.
Older children (16 and 17 year olds) are frequently (incorrectly) told they will not benefit from blocking medication due to already advanced puberty. However:
The following areas require urgent revision:
Currently transfer to adult services is flawed, adult services often refuse to acknowledge the assessments done within the children’s service. Lengthy assessment processes are repeated AFTER patients have waited significantly for the appointment in adult services. There are reports of patients being discharged by the Tavistock with no follow up, and being left without any care whilst on lengthy waiting lists (>2yrs) for adult services. On arrival at adult services the assessment procedure starts again, adding more unnecessary upset and cost to treatment. Young people receiving treatment elsewhere or self-prescribing are discharged from the NHS and receive no monitoring.
Please see below the conclusion from a parental survey undertaken in 2014.
Mermaids’ Parents Survey 2014 Conclusion:
This survey collected the thoughts of the parents of 44 children and adolescents with gender dysphoria who ranged in age from 7 to 17yrs. 40 of the responders were parents of children who were already pubertal at the time of referral. 27% of all those who responded had waited over 18 weeks for their initial assessment with the GIDS.
Parents reported that the wait for the first appointment had a negative impact on the mental health and wellbeing of 31 (77.5%) of the 40 young people included in the survey; three (7.5%) had attempted suicide whilst on the waiting list to be seen for the first time. Only five (12.5%) parents responded that they didn’t think there was any negative impact from the wait with a further 4 (10%) not knowing if there had been any impact or not.
Behavioural and emotional problems are well recognised in the young trans* community. 19 of the 31 parents had contacted the GIDS to report deterioration in mental health and wellbeing. On only one occasion did this result in an expedited appointment. This case was not a child who had been self-harming, had no depression or other mental illness and was not restricting their food intake.
27.5% of parents reported their child restricting their food intake whilst waiting for the first appointment. Many young people with gender dysphoria will severely restrict their diet in an attempt to delay the onset, or slow down progression of puberty. Trans boys in particular restrict their calorie intake in an effort to inhibit breast development and stop periods. This has serious consequences to both their physical as well as mental health.
The median time (for those who are already pubertal) from referral to receiving medical intervention is 13-15 months). This time translates into interminable torture for gender dysphoric teenagers who see their body changing throughout this period and are desperate to halt those changes. This is often happening at an important time in school where GCSEs are approaching. Many parents report children missing school and failing academically as a result of their gender dysphoria. Again it is well recognised that “The experience of full biological puberty, an undesirable condition, may seriously interfere with healthy psychological functioning and well-being. Suffering from gender dysphoria without being able to present socially in the desired social role or to stop the development of secondary sex characteristics may result in an arrest in emotional, social, or intellectual development”. In 2011 Dutch specialists stated “Pubertal suppression averts the despair of gender dysphoric adolescents because of their physical changes and it may contribute to more self-confidence when socially interacting in adolescence and adulthood”. This is not something that can afford to be delayed.
Some parents report an initial improvement in mental health once the referral to the GIDS has been made but go on to report serious decline in mental health whilst waiting for assessment and medical intervention.
There is presently NO choice for children and adolescents seeking care for gender dysphoria in the UK and the present service is seen by parents as being slow to access and slow to treat. There is only one service within England and Wales; the Scottish service will not see children from outside of Scotland. There is NO private provision for under 16s in the UK either. Parents therefore have no choice but to use the Tavistock and Portman service. A number of parents express deep dissatisfaction with the service but they have nowhere else to go. The only alternative is an expensive trip abroad that is out of financial reach for most families. Two of the families in this cohort have decided the wait for NHS treatment is too long for their child and have travelled abroad for early care.
45% of families reported that their child’s emotional health deteriorated on the run up to their appointments and another 45% stated that their child’s emotional health suffered in the period of time following the appointment. It is known that young people with gender dysphoria “have a more anxious nature as compared to their normal counterparts”. This survey did not ask for reasons why that may be but it is possible that the young people feel that the appointment is so important that they find it stressful. It is also possible that the clinical situation is overwhelming to young people as there are frequently many clinicians (up to seven!) in the room at the same time. Long travel times may also contribute to stress. Disappointment at clinic outcomes may potentially contribute to the deterioration in mental health following the appointments. Further investigation is required into this area but it is important to reduce any stress provoking factors associated with clinic visits for this cohort of young people.
50% of families express dissatisfaction about the travel to clinic. Many families have to travel for over 3hrs to get to their appointments. This can be costly not only in terms of travel costs, but also means that parents require a full day is off work and the young people miss a significant amount of time in school / college. Mermaids’ members frequently request local care - this should be considered urgently.
Adult gender identity services have provision for additional therapy such as speech therapy, hair removal and occupational therapy. The child and adolescent service has no such provision and no help or advice is offered in this area. Adolescents frequently feel self-conscious about their speaking voice and some refuse to speak to people they do not know as a consequence. They may become withdrawn and non-participatory in and out of school. Young people often develop musculo-skeletal problems a result of wearing binders or adopting bad posture to hide their anatomical sex characteristics. No advice or help is offered by the GIDS in this area. Parents are left to support their child by employing private voice coaches and physiotherapists etc. Young people who are beginning medical intervention are told to consider fertility preservation but absolutely no practical help is offered in this area. The same holistic care should be given to adolescents as is offered within adult services.
Puberty blockers are completely reversible. It is the opinion of Mermaids that the wait for these blockers in the present service for those young people who present during puberty is far too long and results in increased feelings of gender dysphoria, increased incidence of self-harm and deteriorating mental health. There is good evidence that prescription of blockers improves mental health and that cross sex hormones decrease gender dysphoria. The risk of suicide is disproportionately high in this group and urgent changes need to be made to waiting times in order to avoid tragedy in the future. Delays in preventing puberty allows development of secondary sex characteristics (eg facial & body hair, voice dropping, development of breasts), that are difficult and costly to reverse in the future and require prolonged treatment to do so. In 2008 Cohen-Kettenis wrote “the child who will live permanently in the desired gender role as an adult may be spared the torment of (full) pubescent development of the “wrong” secondary sex characteristics (e.g., a low voice and male facial features for the ones who will live as women, and breasts and a short stature [males are on average 12 cm taller than women] for the ones who will live as men)”. In the same paper Cohen- Kettenis, when writing about consequences of failing to delay puberty, states “It may lead to developmental arrest, and a psychological functioning forever hampered by shame about one’s appearance. This implies that “in dubio abstine” may actually be harmful. Realizing the potential harmfulness of non-intervention, one may wonder whether not providing treatment may not only be doubtful on ethical grounds, but also have legal implications”. It can easily be argued that delaying treatment for over 12 months will have similar psychological and physical consequences as not treating at all.
Clearly from a psychological and a physical perspective, earlier treatment is advantageous to late treatment. Treatment of inevitable co-morbities that will arrive from failure to delay puberty undoubtedly increases costs to the NHS (A&E visits, psychiatric support, speech therapy, occupational therapy, cost of avoidable further surgery such as mastectomy, facial feminisation surgery, thyroid chondroplasty, tracheal shave etc,) and has significant negative impact on the final outcome for the individual.
Recommendation:
Schools have no formal resources to advise them how to best support a trans student. Many schools do not wish to engage and refuse to make any reasonable adjustments for a young person, and/or are completely unaware of their duty of care, of the Equality Act and how it protects gender variant young people. There is no official guidance. Mermaids are approached by parents on a weekly basis for help to challenge schools who are failing their children. Mermaids supply resources to schools developed by councils around the country that provide excellent guidance around gender identity. However, as these are not national resources, schools often feel no obligation to refer/ adhere to them. Gaining this information requires parents or school staff to contact Mermaids or search the internet to source this information.
There is a lack of even basic understanding of gender variance within many education professionals. This results in young people being left vulnerable and unable to gain access to appropriate support. Staff training around gender identity (possibly e-learning) should be widely available and mandatory for all school staff and included during teacher training. Existing e-learning (e.g from GIRES and Mermaids) are useful reference points.
Recommendation:
Changing names and sex markers within IT systems remains problematic. Young trans people are unable to change their name or sex within their educational records. This then impacts the name registered for examinations. Even when young people have produced legal documentation of name change (Deed Poll, Statutory Declaration) schools continue to refuse to change the records both internally and with external examination boards. Young people need to be allowed to change their name and sex within their records to prevent those young people from facing unnecessary burdens of their gender identity history. Schools should recognise the impact this has on a young person’s development and ensure that inadequate IT systems don’t prevent workable solutions.
Recommendation:
Mermaids’ experience of children in care or families dealing with social services has been poor. There have been many cases where, if the families support their child’s gender variance, social services have attempted to remove children from the family home by treating this as a safeguarding concern and investigating the parents accordingly. Social workers have no formal knowledge or training around gender variance, and appear to act on their own prejudices rather than researching gender issues. For children and young people in care, no provision or reasonable adjustments are made if a young person is presenting as the opposite gender to their birth gender, and in many cases staff are failing on their duty of care.
Recommendation:
6