CMDHB Gender Reassignment Health Services Review Transgender Community Feedback Recommendation for next Agenda Point Recommended for CMDHB Project Meeting Agenda Date Added 1. Clarification of the Project Plan (timeline, tasks etc) and expectations placed upon the 17/08/10 trans representatives in the team. 2. Ownership of the final guidance document: The ongoing importance of housing the 17/08/10 document somewhere specific so it will be updated every few years. 3. Feedback document from the trans community and discussion of key points 17/08/10 Collated Feedback by Topic Point Diagnosis Date Added 1. Recognition of individual’s right to seek treatment without having to be 20/08/2010 pathologised. Eg. An adult is capable of deciding they are transgender without needing a registered psychiatrist to diagnose them. 2. Utilisation of psychiatrists only when dual diagnosis of mental illness or disorder is 20/08/2010 implicated. ‘ Point Counselling & Support Date Added 3. Counselling should be highly recommended, however it should not be forced upon 20/08/2010 individuals to achieve a time period to be able to access hormones. Readiness is not measured in 3 month increments, but the individual’s decision. 4. Real life experience is not always safe for a trans person. If the aim of RLE is to 05/08/2010 ensure the trans person has relevant support, that can be achieved by a safer methods. (E.g asking what support I have during my transition.) Point Access to Hormones Date Added 5. Weight loss is sometimes required before a trans person can access hormones. This 20/08/2010 can be a significant hurdle for some trans people, particularly if discomfort with their body prior to transitioning inhibits them from exercising. 6. Multiple hormone treatment options are available. The guidelines should 21/08/2010 encourage the medical practitioner to discuss these with their client and let the client make an informed decision about what is right for them. 7. Respect for the client is paramount. A lot of people find they have to go to 21/08/2010 seemingly extreme lengths to justify their identity to medical professionals and gain access to hormone treatment. Point Surgery Date Added 8. Can the guidelines include instruction on how to apply to the high cost treatment 21/08/2010 pool for surgery Point Ongoing Wellness Date Added 9. If all GP’s have access to these Guidelines it will help to demystify trans issues and 21/08/2010 they may feel more confident in taking them on as patients to manage their general health 10. “Te Whare Tapa Wha” is a holistic health and wellness model that could form a 05/08/2010 good basis for the project. (To complement, replace or relate to the standard pakeha notions about health and medicine.) Point Uptake of Guidelines Date Added 11. The resource could be endorsed by Royal Colleges and Associations (of 05/08/2010 Endocrinologists/Counsellors/GPsetc) 12. Guidelines should include contacts for clients to make complaints via the Health & 21/08/2010 Disability commission 13. Utilising positive, non-pathological wording will engage the trans individuals and 20/08/2010 empower them in their utilisation of this resource with their medical practitioners. 14. Circulate completed guidelines to ALL General Practitioners in New Zealand 20/08/2010 15. Guidelines need to include advise to DHB’s on referring to ensure that people can 21/08/2010 access treatment even if their DHB does not cater to it locally Point Ownership and Future of Guidelines Date Added 16. Medical ownership of guidelines should be in partnership with one or more trans 20/08/2010 organisations to ensure continued community input 17. Handover of ownership to be done with review timeline recommendation. Eg. To 20/08/2010 be reviewed every 3 years minimum 18. An outcome of the project needs to be a list of issues arising that have been out of 21/08/2010 scope which could be handed over to the trans community for further lobbying General Community Feedback Point Community Feedback Date Added 1. Feedback from a Trans health professional would like to remind us that the 17/08/2010 guidelines are not binding and we should not get bogged down in the ownership question to the detriment of producing the guidelines. 2. We could find useful allies by considering the issue of de-pathologization, because 05/8/2010 this is a concern for many people, not just trans people. 3. I like the primary healthcare focus. It (the guidance) needs to be communicated to 05/8/2010 all GPs. 4. I do not want to be diagnosed with a disorder in order to obtain hormones or 05/8/2010 surgery. 5. Trans people should not have to tell the same story over and over again to 05/8/2010 convince medical professionals (mental health professionals or other) that they deserve medical treatment. 6. Some FTMS are barred from hormone therapy because of being overweight. While 17/8/2010 weight is a health concern for some people, medical professionals need to recognize that there are a number of positive effects of hormone therapy for FTMS – such as increased energy and usually a happy feeling of motivation – which can leader to healthier lifestyles in terms of food and exercise. People are more likely to be healthy about their bodies when they are happier or more satisfied. More people suffer harm due to lack of access than harm due to accessing hormone therapy while overweight. 7. I personally think that trans women should undergo extensive counselling to deal 04/08/2010 with personality issues. It has been my experience that most trans women have a number of personality issues that they fail to deal with. Unless these personality issues are dealt with they will substantially affect the ability ...of the trans community to be treated as equals as the wider society 8. (Cerebral Palsy Society of New Zealand Review) I was involved with this study, and 04/08/2010 the conversation we had was around inclusion and for the health system to understand difference. I believe there are many similarities between disability and trans communities. I think there's a connection here, and think it's important to somehow share the research. 9. I am a male to female of some 27 years post surgery that was performed in 04/08/2010 Brussels in the days when surgery was not undertaken in NZ. I am a Registered nurse who has suffered many insults and discrimination within the so-called caring profession. However with support of family I have risen to the academic top of my profession, holding a doctoral degree, and teaching full time in a Bachelor of Nursing programme. 10. I was disappointed to note in the Minutes that there was no feedback on the 04/08/2010 Standards of care document produced by the Harry Benjamin Assn. These give us a very good outline of what we should be producing (altered of course for NZ conditions). 11. I would hope to see, since the endocrine treatment has seemingly been discussed, 04/08/2010 is the need for pharmaceutical companies and the medical profession to instigate trails of hormones used by the medical profession in treatment of transsexuals. I have yet to find one pharmaceutical company who has a recommendation for hormone treatment of Transsexuals. I could be wrong. But we are just treated as the target gender. It would be nice to see trial data showing the good and bad, as it affected us and not just a guess based on the target gender trials. At the moment, hormones are merely a dart thrown at the wall as far as transsexuals go. 12. It is essential that the Group produce guidelines that are Best Practice guides for 04/08/2010 the care of the gender conflicted person. The NET is our greatest misinformation source and the bain of my life as I have many gender confused people telling me ‘its true cause I read it on the Net!’ One of the participants referred to the horror stories (we all can tell) but it is vital that starting with the GP community there are Best Practice guidelines so that they do not willy-nilly give out hormones to persons who have read the stories, surfed the Net, watched Facebook and got a compelling story together. 13. This resource or guidance should not restrict the freedom of trans people to access 05/8/2010 a range of medical services and should encourage medical professionals to consult their trans clients about their medical care. 14. A strengths-based approach would be helpful. 05/8/2010 15. Whatever is created needs to be specific and appropriate to Aotearoa New 05/8/2010 Zealand, which means it needs to take into account the diversity of Maori and Pacific Island people not just focus on the American/European medical models. 16. Weight issues are often as used as a reason for not prescribing hormones. This is 17/8/2010 seen as quite opaque by many of the Trans community. 17. How is an application made to the high cost treatment pool for surgery? Could this 17/08/10 be part of the guidelines? 18. How will the guidelines be implemented, will consumers have choice especially 04/08/2010 those within DHBs that do not provide or embrace services based on the guidelines. 19. Flexibility of accessing services supplied from another DHB. 04/08/2010 20. Ownership or responsibility of the guidelines, is it a possibility to use an existing 04/08/2010 organisation (e.g. a society of gender therapists and college of GPs) OR form a new organisation, perhaps a NZ instance of WPATH as an example. Trans people would like to form part of this ownership. 21. Guidelines should be encouraged to provide ‘best practice’ in regards to services. 04/08/2010 22. Creating a degree of uniformity of services across the regions is desirable 04/08/2010 23. Targeting PHO as the primary health care providers is suggested as a way to gain 04/08/2010 acceptance of the guidelines. 24. Not all DHBs will have the required specialist services required; what will the 04/08/2010 options be for those without local services. 25. Understanding of what is in scope of the project – suggestion that the Trans reps 04/08/2010 will provide all comments from the community for consideration by the project team on whether they are considered in scope or otherwise. 26. Re-iterate the requirement for an exit report that highlights services or 04/08/2010 requirements that are out of scope but require further assessment. 27. Robust complaint procedures for consumers of services should be set out in the 04/08/2010 guidelines. 28. Creation of best practice guidelines already seem to be available, perhaps the best 04/08/2010 approach is to pick an international published document and adapt it where required. 29. Privately available medical services for trans services, seem to be readily available 04/08/2010 for those who are prepared to pay. 30. General belief in the Trans community that the medical community do not know 04/08/2010 how to or want to work with Trans people. 31. Guidelines should not dictate the path Trans people navigate – menu of services 04/08/2010 should be available. Understanding that not all Trans people are the same. 32. Do not put checkpoints in place just for the sake of the medical community; 04/08/2010 consideration of what is right and what is good for Trans people’s well being. E.g. creating an absolute requirement to see an endocrinologist for prescribing of hormones. 33. The wellbeing of trans people should be the most important factor in the creation 05/08/2010 of this resource. 34. De-pathologizing trans identities may be beyond the scope of this project but we 05/8/2010 can contribute to a better understanding of why some trans people object to being pathologized/labelled with a disorder. 35. We need to think about accountability: how will health practitioners be 05/8/2010 accountable for their choice to use or not use this resource? 36. Inclusion and respect are important goals, not just best practice from a medical 05/8/2010 perspective. 37. The phrase “guidance” would be more accurate than “guidelines” for the resource 05/8/2010 produced by this project because “guidelines” is a specific term that requires prior research to have been undertaken and nothing adequate has been produced in NZ (or in other parts of the world, as far as we can tell.) 38. Trans people will need to use the resource we create. By using it we will have 05/8/2010 ownership of it. 39. “Te Whare Tapa Wha” is a holistic health and wellness model that could form a 05/8/2010 good basis for the project. (To complement, replace or relate to the standard pakeha notions about health and medicine.) 40. The resource could be endorsed by Royal Colleges and Associations (of 05/8/2010 Endocrinologists/Counsellors/GPs etc) even if it is not housed in these specific institutions. 41. Clinical advice should assess a trans person's health needs and the potential 20/08/2010 benefit a procedure may have on their quality of life. A trans person's personal assessment of these health needs and benefits is an important component of any such assessment. Where potential health risks are associated with any given procedure, these should be clearly explained. These should also be balanced against any health risks associated with delaying or not providing such medical assistance. Informed consent should be one of the underpinning principles of the guidance. 42. The guidance needs to be updated regularly, should become a growing document, 05/8/2010 not left to stagnate and become irrelevant. (This could be aided by endorsements or, even more effective, ownership by institutions.) 43. Intersex people wishing to transition have gender reassignment requirements and 23/08/2010 this somehow needs to be included in the guidelines 44. Endocrinologists, Sexual Health Clinicians and GP’s are known to prescribe 23/08/2010 hormones in the Auckland region. Is there a preference to have this limited to specialist endocrinologists, particularly for start up treatment and monitoring.