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Feminism: Sex and gender discussions

Rates of detransition and regret: nhs

8 replies

NeurotrashWarrior · 23/12/2019 07:59

This is an excellent analysis of the flaws in the nhs assertion that detransition is rare.

twitter.com/trans_butch/status/1208737558726877184?s=21

OP posts:
NotBadConsidering · 23/12/2019 08:53

Excellent. Points out the flaws that might happen with the Melbourne study too although they will be “invited” to complete an online questionnaire biennially once they leave the service, so hopefully those that detransition will be able to let rip.

NeurotrashWarrior · 23/12/2019 11:15

And two of the authors are trans themselves...!

OP posts:
Smallblanket · 23/12/2019 14:58

The conclusion is that regret and detransition are low - but they are only talking about CURRENT patients.

How disingenuous is that?

Does no gender clinic do follow up studies?

ArranUpsideDown · 23/12/2019 16:06

but they are only talking about CURRENT patients.

This is sometimes known as informative censoring and something researchers take into account when considering the reports of clinical studies or trials.

Informative censoring can happen when participants are lost to follow-up and this might be due to reasons related to the study or trial. Eg, in a study comparing the stages of transition interventions and experiences of participants, you will have people receiving follow-up care for some transition stages.

You will still have the participants who are continuing with the transition programme who are deemed to be content because they're on schedule. Anyone who is continuing must be, at least to some extent, neither regretting nor discontinuing.

You might lose the participants who've decided not to progress at all. But, at the last time you took a survey of them, they might have said they were happy with the process and then had a change of mind and decided to delay or not progress but they're under no obligation to inform you. But, in the intention to treat sense (which is the method you use to report studies and trials for various sound reasons) they're registered as neither regretting nor detransitioning.

There might be some people who do respond to follow-up surveys and they might be the ones saying they're on a pause (but not regretful etc.) or that they are regretful etc.

Does no gender clinic do follow up studies?

Recruitment to a study or even decent follow-up of whoever does make it to a clinic seems problematic. And, yes, such studies are important.

Smallblanket · 23/12/2019 16:29

Thanks for that explanation - surely any ethical clinician would want to get the right information about regret rates? Following up patients seems basic common sense to me.

We are talking (mostly) about NHS services here, not a commercial operation, after all.

MoleSmokes · 24/12/2019 12:50

There is no excuse for NHS services not even attempting to follow up. By analogy, NHS and other Public Sector (and voluntary) Services that issue assistive technology devices and "aids to daily living" often want to audit "technology abandonment" rates and reasons in order to improve services.

The issue with GIDS being a children-only service is not insurmountable. Follow-up could be part of a research project that extended the age range. I was gobsmacked that GIDS being a children-only service was given with a straight face as a reason for extended follow-up not being part of the existing research design.

There might be a technical problem with an NHS service including planned follow-up at intervals greater than 6 months. I do not know the current situation but at one time, to do with contracts and costings as part of the "NHS internal market", lack of patient contact for a six month period triggered automatic administrative discharge of the patient from the service, ie. a new referral would be needed to get the patient back into the system and start a new "episode of care".

In practice, if that problem exists it can easily be circumvented by setting the computer system to spit out a standard letter or text just before the six month mark with a reminder along the lines of, "Hope all is going well, we are still here for you if you need us, here is how to get back in touch."

Going back to the assistive technology analogy, there is a wealth of research showing that patients who are having problems or who have "abandoned" technology do NOT typically get back in touch with provider services.

There are many reasons, eg.

  • forgotten how to make contact,
  • thinking that the service will not be interested,
  • thinking that they are not eligible for further care post-discharge,
  • feelings of failure,
  • fear that they will be dealt with unsympathetically and "blamed" for rejecting the technology
  • fear that they will be pressured into "trying again" with technology that they do not get along with or find unhelpful overall
  • fear that they will thought of as having "abused the system" if they no longer need the technology
and the BIG one
  • not wanting to be a "bother" to busy people and taking their time away from other patients.

The only way to ensure that patients get further help if it is needed is for services to contact patients at regular, if infrequent, intervals, eg. once a year. In the old steam-driven days, best-practice was to send out a letter enclosing a stamped addressed envelope with a simple ticky-box form to return. Protocols would vary if the form was not returned within a set period.

This system is infinitely cheaper and easier to implement now that patients can be contacted by text and email so it could be done more frequently at little extra cost. GDPR compliance needs to be considered but is not a barrier.

Ultimate responsibility for failure to implement Follow Up arrangements lies not with NHS provider services but with NHS Specialist Commissioning.

It really pisses me off that Commissioners are pumping money into piloting an adult "Trans Health Service" in Manchester, the Service Specification reading more like an Advocacy and Community Support Hub, ie. rather than funding a legitimate and much needed NHS clinical follow-up system for adults and especially for children exiting GIDS for adult services.

The Specialist Commissioners have, of course, been "captured" by the trans advocacy lobby. The Detrans Advocacy Network desperately needs to push to get in there at that level, eg. an MP asking a question in Parliament - are Commissioners are aware of DAN, explaining DAN, demanding that they are invited to be involved and to submit a report, asking for a report back to Parliament on plans to commission research and services for detransitioners, etc. ( I have already mentioned this to Charlie and, I think, @DJLippy ).

There is NO EXCUSE for the continuing failure of NHS Specialist Commissioners to pay no regard whatsoever to the need to audit the outcomes of NHS treatment and ensure that treatments are evidence-based.

There is NO EXCUSE for their failure to acknowledge and act on the now widely publicised fact that a significant number of young people are detransitioning after being prescribed cross-sex hormones and in some cases life-changing surgery.

There is NO EXCUSE for their failure to attend to the views of child psychologists and psychiatrists that the age range for "children's services" should be extended to 25, ie. to coincide with the growing consensus that that is when adolescence ends.

There is NO EXCUSE for Commissioners pumping money into piloting new adult services that bear little relation to NHS clinical services when there is evidence that existing NHS services are causing avoidable damage to patients.

There is NO EXCUSE for expecting detransitioners to bear the financial costs of detransition when the NHS is obliged under statute to ensure that treatments do not result in extra costs for patients.

There is NO EXCUSE for not including the cost of supporting detransitioners in their commissioning plans and contracting appropriate NHS services to provide these.

There is NO EXCUSE for continuing to support the fallacy that anything other than "affirmation" of "trans identities" amounts to "Conversion Therapy".

There is NO EXCUSE for NHS Specialist Commissioners allowing services to continue operating without an effective follow-up system.

MoleSmokes · 24/12/2019 12:57

ps. I am blocked on Twitter by @/trans_butch for some reason. I logged out and archived the thread posted by the OP in case anyone else is blocked and has problems because they only access Twitter on an app that requires them to be logged-in:

archive.ph/nM0lm

MoleSmokes · 24/12/2019 13:04

pps. Threadreader version - for some reason I can see the tweets here even though I am blocked, I didn't expect that Smile

threadreaderapp.com/thread/1208737558726877184.html

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