Whimsical, queer exploration of all things gender.

Posts tagged ‘Gender Identity Clinic’

The 32 Problems I Found with this Gender Identity Service FAQ Guide.

Transgender people have, as a group, an enormous amount of awareness of the problems with accessing gender related support through the NHS. This post will highlight some of these problems. Below is a letter received in February 2015 from the Leeds Gender Identity Clinic, copied verbatim (including all errors, down to mis-spacings and grocer’s apostrophes). The quality of this letter is pretty dreadful, and prompted my critique and questions, to be found below the letter.

The numbers in square brackets are references for my points. Some numbers will repeat, indicating the same response to a repeat of a problem.

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Leeds Gender Identity Service

Frequently asked questions August 2013 [1]

Leeds Gender Identity Service is well established, around 20 years old and has evolved over the years. It is a dynamic process. Below are some frequently asked questions and our answers as they stand in 2013.[1]

1) What are the team’s views and commitment to the client group?

The service has a very committed multi disciplinary team. Fortunately all members of the team (Consultant Psychiatrists, Medical Practitioner[2], Endocrinlogist, Clinical Nurse Specialist’s[3], Occupational Therapist, Prescribing Pharmacist, Clinical Team Manager, Clinical Service Manager and the Team Administrators) Share the belief in the bio psycho social model[4] and its application within physical, mental, social and general health and Gender Dysphoria in particular. All members of the team believe in the recognition of Gender Dysphoria[5] and the need to facilitate and co ordinate gender reassignment in the safest and most effective manner.[6]

The service believe in mutual respect between service provider and service user, informed consent, capacity ,[3] guidelines and a flexible application accordingly[3] to individual needs are paramount to the success of an agreed outcome.

2) What standards of care are followed by the service?

The Harry Benjamin International Standards of Care have a well established and historical influence on standards of care which are considered worldwide, over recent times these have evolved into the WPATH, version 7, and standards of care for the health of transsexual, transgender, and gender nonconforming people. As a team we are mindful[7] of this guidance. The team are guided by the National Royal College of Psychiatrist standards; however these have not been ratified[8] are recognised by NHS England. The Gender Act, ICD10, DSM IV, Nice guidelines, Act of parliament 2004 and the policies of the trust including First Do No Harm all guide our practice.

The service has an active involvement in the development of the National standards of care professionals group. This includes other leading, NHS, Gender Identity Services in the UK. The purpose of the group is to define agreed, UK, baseline standards of care.

A proposed DSM V is due for publication; however this is still in draft format.[9]

The DOH[10] published guidance for G.P.’s[3] and other health care staff in May 2013. Leeds Gender Identity Service along with other NHS teams[11] were involved in the preparation of this document.

3) What is included within the care pathway?

The care pathway is guided by the standards of care which are stated above however has the ability to be flexible to meet individual needs. It includes all the stages of Gender reassignment, assessment, hormone treatment, social gender transition and surgery[12]. The service initiates the 2nd opinion and surgical referral but these are completed outside of the Leeds Gender Identity Service[13] therefore any waiting times associated with these are outside of our control.

4) What is the assessment?

The assessment stage takes up to 4 sessions (4 months) however a minimum of 2-3 sessions completed over a 2-3 month period could be agreed according to individual needs.

The criteria of the assessment is confirmation of the diagnosis of gender Dysphoria and exploring aspects of physical, mental and social health. Issues of eligibility and readiness to move into the next stage would be evidence based.

5) What is the social gender transition (SGT)?

Social gender transition is in its entirety approximately 2 years[14]. In order to complete an assessment of social gender transition the information gathered during this stage of social gender transition needs to be evidence based, this would include:

Living in role full time[15]

Change of name[16]

Some form of occupational activity[17] this could include voluntary work, paid employment, further studies or evidence of engagement/ daily living in the new role[18]. The service looks at occupational activity in the most flexible way and will agree with each service user how they will meet this requirement depending on their individual circumstances. If extra support is required by the service user a referral to the occupational therapist is available.

It is the service user[3] responsibility to collect this evidence. The team’s responsibility is to document it [19].

The hormone stage describe3d in question 6 would also fit into the SGT and will last 12months this would include a surgical referral once a positive 2nd opinion has been received.

Leeds Gender Identity Service is keen to learn from our experiences, working safely and flexibly within the care pathway to meet the changing needs of the client group.

For those clients who feel they are unable to live in full time SGT or do not wish to live in role at all in a specified area of their life e.g. employment ‘special circumstances’  this can be discussed with the clinician. If ‘special circumstances’ is agreed the following criteria must be met:

The client will be assessed as fitting the diagnostic criteria of Gender Dysphoria with a high level of confidence[20]. (In accordance with ICD 10)[3]

Psychotherapy opinion / treatment will be accessed and a detailed report provided to the Gender Identity Service supporting a referral for hormone treatment.

A 12 month plan will be agreed if appropriate to identify additional objective evidence for all other aspects of SGT can be ‘agreed between client and clinician.

6) What is involved in the hormone stage?

The service has an appointed Medical Practitioner, Consultant Endocrinologist and a prescribing pharmacist they are responsible for this stage of the pathway. The lead professional remains involved throughout the stages including the hormone stage. Close liaison with General Practitioner[3]/other professionals are a must. This stage could last for 12-18 months or significantly shorter in individual cases. While attending the hormone clinic Clients[3] will receive regular blood test[3] from their GP and blood test monitoring by the gender service, until such a time that it is safe to transfer all hormone treatment care to the GP including appropriate prescriptions.

7) What is the surgical stage?

Surgery stage:  2nd opinion is a prerequisite to a surgical referral. Once we receive a positive 2nd opinion a referral to the appropriate surgeon is initiated.  Any delays within this stage would be due to delays in variables[21] totally outside the control of the team.

The service will be responsible for referring clients to an NHS Gender Specialist for a 2nd opinion appointment however if individual clients wish to access private 2nd opinion appointments to speed up waiting times it will be the responsibility of the client to self refer or negotiate[22] this with their GP.

Leeds Gender Identity Service is happy to receive and act upon a positive, private 2nd opinion from a reputable[23] Gender Specialist at the appropriate time within the care pathway.

The service usually refers clients to specific identified surgeons however will consider referral to other areas if a client has a specific request and the CCG[24] are willing to fund surgery in the requested area.

Clients will need to have completed 12months,[3] full time, SGT before receiving a mastectomy and have received 6 months hormone treatment[25].

Breast Augmentation is not currently a core treatment[26] commissioned through Leeds Gender Identity Service; however clients can apply for this following completion of 18 months on hormone treatment[27] if there is clear failure[28] of breast growth. This treatment can be applied for through individual CCG’s via individual funding requests.

On occasions clients have requested orchidectomy surgery without a penectomy, the service will work collaboratively with clients to ensure the treatment provided is in line with supporting client choice and within the safety of clear clinical boundaries.

This would include:

Confirmation from the endocrine clinic that current hormone levels are safe, stable and within range.

And

A ‘one off’ appointment from an independent NHS gender Specialist is obtained.

8) How long will it take me to move through the care pathway?

The service follows a care pathways which can be adapted to individual circumstances taking into account transition which has already taken place before attending the service and specifically for those clients holding a Gender Recognition Certificate. An illustration of the pathway could be represented as follow:

The full process from start to finish around 3-4 years[29]

The shortest flexible process depending on individual needs could be condensed to 18-24 months; this has to be realistic taking into account waiting times for second opinions and surgery which are outside of the services[3] control[30].

9) How do the team keep abreast of new developments and ensure client safety and satisfaction?

The service is part of a wider governance group which include most other UK, NHS Gender Identity Service’s[3]. This group meets on a 6 monthly basis and shares views, takes learning’s[3] and discusses standards and guidelines within the area of Gender Identity.

The team are also part of the Specialist Services Clinical governance group within Leeds and York Partnership NHS Foundation Trust who meet on a quarterly basis and also have a team monthly Clinical Governance meeting where issues can be discussed in more detail. Clinical audits, rigorous clinical supervision, evidence based practice are all essential parts of our practice.

Service user feedback is an area which we have worked particularly hard on over recent years. We always provide clients with feedback forms following any new developments and we also ask service users to complete satisfaction questionnaires. Information taken from these forms is used to develop and inform practice in the service[31].

10) Will I get funding to access the service?

The service is commissioned by NHS England therefore potentially we could accept referrals from around the country. Individuals are funded for assessment and if appropriate core treatments which are funded by NHS England.

11) How will I know what is happening in the service?

The team have a specified lead in service user involvement she works alongside service user volunteers to produce a six monthly newsletter. The Newsletter will update all readers on any new developments within the service, will provide feedback on any completed service user feedback form and how this has informed practice and provide service users with an opportunity to display thoughts, feelings, poems or information to others!

The newsletter is posted out to all service users and is available in the waiting area.

You can also access the News letter via Leeds and York Partnership NHS Foundation Trust website.

12) What if I am discharged from the service but am experiencing a Gender related problem?

The service offers “one off” appointments to clients experiencing an issue they need to explore within the specialist service. To access this you will need support from your GP[22] so they can write to the team and ask us to see you. Again this will be funded by NHS England. The “one off” appointments may cover issues which are stated below:

“One off” assessment lasting for an hour n order to advise GP about outstanding problems and submit a medical (psychiatric) opinion.

A “one off” assessment lasting for an hour carried out by our Medical practitioner who is able to advise GP’s on endocrinology issues.

GP’s can also request “one off” extended full day assessment in complex referrals where specialist advice / recommendations are required.

13) How long will I need to wait to be seen once I have been referred?

The service is commissioned to see a specified number of new clients each year by NHS England[32]. Once we have seen these clients a waiting list will start to form for the next financial year. NHS England are kept informed on the waiting list on a monthly basis and will use this information to help identify new assessments to be funded on each rolling year.

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…And now my bit.

[1] – Well, at least this makes it easy to identify as out of date. Major changes have occurred in the provision of gender based care (such as the release of the DSM V – an important diagnostic tool which actually redefined gender related diagnoses). An update is essential.

[2] – Wait. Only one medical practitioner? For the whole practice? This is alarming not only because of how understaffed it makes the practice appear, but also if any service user has a bad experience with that doctor, there is no-one else. The implication is that access to services all go through this one person.

[3] Grammar is hardly the most important issue here, but when I read an official document providing medical guidance, and it reads as if it was thrown together and not given a second glance, that translates into an uncertainty about the meticulousness and professionalism of the institute being represented. Such primary-school-level errors simply give an unprofessional air, and are easily avoided.

[4] Even with a biology degree I needed Google here, so they could really rephrase to be more user-friendly. How about ‘we understand that personal, social, and psychological factors play a vital part in experiences of gender, and do not seek to reduce service user’s needs to something purely biological’?

[5] – Um. Whilst this is clearly meant to be reassuring, it’s so basic as essential as to come off as alarming at the idea that anyone possibly might not recognise Gender Dysphoria in a Gender Identity Service. If I went to the GP for a vaccination and they said ‘don’t worry, I believe in these!’ I really wouldn’t feel better. There is a history of medical practitioners failing to respect transgender people’s agency, but this statement is hardly an effective way to gain trust.

[6] – I’m so relieved they clarified they wouldn’t do things an unsafe and ineffective manner. Pointless waffle.

[7] – ‘Mindful’ – this is so vague as to be useless. It implies they don’t actually have any external code they’re bound to follow, and can choose to ignore any guidance as and when they see fit. I’m not an alarmist, and I don’t for one minute think guidance would be actively rejected. But not referred to, in preference of one’s own considerations? I can see that happening. Especially as they go on to blanket name six other sets of policies, as if trying to universally appease without actually committing to anything.

 [8] – If not ratified, why chosen/used? I couldn’t easily verify whether this has changed since 2013, but practising with unratified standards seems like it requires explanation, at best.

[9] – This is simply out of date. The DSM V has been published, and this is a really important point. The service is potentially then misinforming service users who may not have much knowledge on the topic.

[10] – Explaining what an acronym is when you use it is widely regarded as a good idea – Department of Health. Should also get a [3] tag for not being ‘DoH’.

[11] – If they’re going to say this, they might as well say who.

[12] – This demonstrates how practice is still quite focused on a model of transgender care that emphasises the gender binary, heavily implying ‘one state of being to another’. It of course is fine for individuals who do feel this way about their gender, but is an approach that fails some of those trans people who are most invisible and marginalised within society.

[13] – Why?

[14] – It doesn’t ‘take’ any time at all, because this is an arbitrary and artificial measure created by the medical establishment. This functions as a method of restriction and control, again policing gender identity along arbitrary and binary boundaries. See here, here. and here for some further considerations, though it’s fair to say it’s a point of contention and much discussion, but lacking much research, especially that which emphasises trans voices.

[15] – Further absolutist, binary conception of gender. The very existence of bigender people blows this out of the water.

[16] – If a person is happy with their name, why should they have to change it? Once again ignoring non-binary people, this also ignores unisex names even amongst binary trans people (Alex, Charlie, etc.)!

[17] – The argument for this is to essentially force trans people into being exposed to the world, again to demonstrate a performance of seriousness and sincerity for medical gatekeepers. Whilst this is argued to provide time within which to learn about oneself and gendered practices, it is highly problematic. Not only the danger this puts people in who wish to and may not pass (before being given access to hormones and procedures that can significantly aid in this) but also for those trans people who may experience mental or physical conditions which makes these demands difficult or impossible. The validity of an individual’s gender identity is not dependent upon how that individual is viewed by others in society.

[18] – ‘new vs. old role’ – a dated, binary based requirement and phrasing that doesn’t work for many trans realities.

[19] – And judge what can or can’t count as ‘acceptable’ evidence, which is coloured by binary and cissexist positionality.

[20] – I went into the ICD (International Classification of Diseases) 10. As it was endorsed in 1990, it was no surprise that it still included ‘transsexualism’ and ‘duel-role transvestism’, and used wince-inducing terms like ‘the opposite sex’. There was no obvious mention of ‘confidence levels’ in relation to diagnoses. Therefore what this actually means, I have no idea and I don’t see how anyone else could readily be expected to either.

[21] – ‘Variables’. Nice and vague there. Such as?!

[22] – The expectation to do this is problematic if someone has a GP who is cissexist or transphobic. Which isn’t as rare as one would hope or expect.

[23] – What defines reputable? Obviously this isn’t easy, but such vagueness only serves to emphasise the position of power which the Gender Identity Service occupies. Obviously it’s vital that standards of care are maintained in private practice as well as state funded, but this wording doesn’t help anyone.

[24] – Clinical Commissioning Group. But everyone knows that, apparently.

[25] – No explanation as to why this is. Further relates to problems with the Real Life Test/Social Gender Transition (SGT) as it stands. Fails to account for those trans people who are very knowledgeable, secure, and stable in relation to their needs.

[26] – More unanswered questions. Why? Estrogen does stimulate breast development yes, but frequently produces small or even unnoticeable development. To create a hierarchy of gendered traits/procedures seems inherently nonsensical as what different trans people value and need for their well-being is obviously variable.

[27] – An excessive, arbitrary, and under-justified restriction. Whilst one can appreciate that with change being stimulated by estrogen, an immediate surgery around that time may risk complications, this absolutism runs contrary to the pledge to individual service user needs and desires.

[28] – And a further restriction. Who decides what, and at what size, ‘failed’ breast development is?

[29] – In true cissexist fashion, prioritising the intensely small minority of individuals for whom gender affirmation procedures are not appropriate, to the disproportionate suffering of a very large number of trans people.

[30] – It’s not the first time, but the service has very clearly distanced itself from responsibility for delays. Obviously this is a recurring problem which has invoked complaints and righteous demands for explanations. Are all of these interactions outside of the service strictly necessary? Could the system be made more transparent so that service users can see what aspects of the pathway causes delays? These are questions that trans people deserve answers to.

[31] – Might it be prudent for the service to also engage with transgender groups, so as to get informed guidance from members of the transgender population who aren’t in the (often stressful) process of accessing these services? Of course the feedback from service users is essential, but by no means the only resource available to them for the optimisation of their services.

[32] – This is of particular note. The idea that only a certain number can be seen, in a way that isn’t dictated entirely by resources (as different individuals require different amounts and types of time and care) but is decided upon in advance doesn’t make sense. It also emphasises one of the biggest problems at the heart of the insufficiencies of NHS Gender Identity Services – lack of funding. The number of individuals seeking aid is growing exponentially, and this remains unrecognised by funding bodies. This isn’t a criticism of the document per se, but highlights one of the more important frustrations with the larger system.

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