I’m just back from an awesome trans healthcare conference in Norway (blog on that to follow). Here I wanted to share information from a presentation by the founder of the transit trans healthcare service in Catalonia (Barcelona region), Spain. Transit is respected across the world for being a service that is leading the field in informed consent depathologised healthcare. Here I will share information on the approach, the history, how it works today and reflections on trans health waiting lists. First a quick spoiler for why you should read on: their waiting list for new referrals is 3 weeks.
The approach
The transit service was set up with a strongly trans affirming philosophy of care, building from principles including 1) a firm commitment to depathplogisation, that trans people have a right to affirmative healthcare without being under psychological or psychiatric control and without requirement for psychological assessment or diagnosis.2) commitment to Informed consent,that trans people of all ages have a right make their own decisions about their own healthcare 3) commitment to avoid diagnosis, recognising that a doctor or psychologist can never know someone’s gender identity.
The history
The transit service ran from 2012-2016 as a service running outside of state management and state funding. It ran in parallel to a state run gender clinic that was pathologising and gatekeeping. Transit was very popular amongst trans communities. The state run gatekeeper service was widely disliked. Three things happened. One, trans communities across the state united behind one clear demand and goal, to demand the closure of the state run gatekeeper service and the transfer of funding to the popular informed consent service. Two, communities organised and did activism growing support and unity behind their goal. Three, they managed to gain the support of a state politician who had the authority in a devolved spanish system to make a change. In 2016 state funding was shifted to the transit informed consent service and the gatekeeping psychology and psychiatry dominated service closed.
How it works today
Trans people always have a first appointment with a medical doctor able to prescribe hormones and never have a first appointment with a psychologist, psychiatrist or psychoanalyst. Fifty percent of patients receive hormones on that first appointment. The waiting list for the service is three weeks, meaning half of patients wait three weeks from referral to hrt.
The service does not deny hrt at first appointment for those who ask for it. For those who come to the appointment asking for hrt, they are usually well informed about her, and hrt discussions take up a very small part of the appointment, instead defining the appointment as a safe space where they can talk about any parts of their life that are difficult, with this discussion having no impact on them getting hrt which is guaranteed as it is their decision to make. The reason people do not take hrt at first appointment is that they have not yet decided what they want and the patient themselves asks for more time, more support or other support.
The first appointment is 45 mins to one hour. There are zero required questions and no assessment of diagnosis. Doctors state that their job is not to assess or diagnose but to support their patient take decisions. The service operates what it describes as a multidisciplinary team but this means something completely different to what this term means in NHS children’s services. In transit it means that in addition to the medical doctor who takes the first appointment there are other professionals who the patient can request to see for additional support. A patient can ask to see a therapist to talk through their worries, history or mental health. A younger patient can ask to see a family support worker to get advice on getting support at school. They can choose to see a voice therapist. All of these additional professionals are offered and not required. The MDT offers value to service users,and does not operate as an abusive multi professional assessment, approval and gatekeeping gauntlet as happens in the UK. This same informed consent approach is followed for under 18s, with parents and legal guardians also involved in decision making for under 16s.
The transit service, with its three week waiting list, covers a population of 8 million, equivalent to the population of Scotland and Wales combined, or one seventh of the population of England, like one of our major regions. It has a total of 43 staff, a majority of whom are very part-time, working 6-7 hours per week for the transit service and working in other areas of healthcare the rest of the week. It has very high patient satisfaction rates. The key areas of complaint the service receives relates to the unavailability of particular formulations like injectable oestrogen, and complaints from parents who would prefer their child had gatekeeping in a slow psychological assessment and diagnosis model. The service has health provision in 8 locations across Catalonia, meaning people don’t have to travel far for an appointment.
Waiting
Last week UK trans healthcare advocates and journalists produced important work on the waiting lists for UK services. Those numbers are appalling. Whilst critiquing these ridiculous waiting lists I also hope we can do three other things:
1) Recognise the political and institutional choices that cause this waiting list: The NHS and our government choose to demand a gatekeeping psychology-led service that is the number one cause of our harmful waiting list. This is about the model of care, not about the amount of funding. In children’s care an increase in funding has led to an increase in the resources allocated to gatekeeping, not to any improvement in access to care. We should be long past arguing that increased funding is an form of solution without systemic reform
2) Recognise how easy it is to make better choices. Harmful gatekeeping services can be closed down and defunded. Respectful informed consent services can be funded and quickly expanded, delivering improved care at a smaller price. Importantly, a demand for informed consent care can and should be made for trans people of all ages, including trans children and adolescents. We need to stand together.
3. Recognise that the way in which we measure our waiting list matters. I hope we can move away from centring the metrics that our NHS and government think matter, and focus more on the metrics that actually matter. I would argue, that the key metric we should be counting, is a metric of the minimum expected time from referral to first getting a prescription for endocrine care, broken down by different characteristics including age and neurodivergence. Measuring a waiting list for access to a first appointment is entirely without merit in a service where the gap between first appointment and endocrine care is measured in years.
The UK children’s service has long had a waiting list of over 6 years for a first appointment. That statistic is likely to reduce. Trans under 18s are being forcibly discharged from the service for not attending identity exploration sessions, trans young people and families are ‘choosing’ to ask to be deregistered from a service that they find harmful and know won’t help them, trans young people and families are deregistering from the waiting list, and reforms to the referral system have made it increasingly impossible to get a new referral. But if that waiting list for the service goes down, does that matter? When those are the end of that wait have to wait for many year more, perhaps until they are 18 (or 25…) for approval for endocrine care.
For adults there has long been a minimum 1+ year delay from the end of the waiting list to getting endocrine care. That is part of the waiting. For many that wait is far longer than one year, and some people go years or never receive NHS approval for endocrine care. We need to focus less on the wait for a first appointment and more on the wait for endocrine care. This data could be collected, by the NHS or by ourselves.
Questions could be asked at the point of a first prescription including:
1. How long did you wait between referral and getting this prescription ?
2. How much of that wait was spent doing things that you found beneficial (counselling you chose to pursue before hormones, time for thinking, time for working through other issues including housing , employment and social transition that you chose to pursue before hormones, time to work through other mental health issues you chose to pursue before endocrine care, time to understand medical transition options). This can be defined as acceptable and patient-centred waiting for healthcare.
3. How much of that wait was not beneficial or harmful to you? (This can be defined as unacceptable waiting for care). Unacceptable and unwanted waiting for essential healthcare is a systemic inequality. Where this this number is counted in months or years rather than weeks, it is a form of state violence against trans people.
Huge waiting times for trans healthcare in the NHS, both in children’s and adult services, are there by design. Better political and institutional decisions in locations like Spain have removed this waiting list, delivering far better outcomes at a fraction of the cost. We demand better from our national healthcare.
Growing Up Transgender 