Gender Identity Services (GIS) in England are currently inadequately funded and staffed to meet the needs of trans and non-binary patients. Trans healthcare was one of the key areas of concern highlighted in the Trans Inquiry findings published by the Women and Equalities Committee last year (you should read the evidence submitted to the Trans Inquiry if you haven't already because it lays out the extent of current issues facing trans, non-binary, genderfluid and genderqueer patients when trying to access and when accessing GIS: https://publications.parliament.uk/pa/cm201516/cmselect/cmwomeq/390/39008.htm). It was clearly stated in the final Trans Inquiry report that the Women and Equalities Committee believed that the NHS was "letting trans people down" and failing to adhere to the Public Sector Equality Duty that they are mandated to follow under the terms of the Equality Act 2010. This is backed up by the findings of the Unhealthy Attitudes Survey carried out by Stonewall in 2015 (http://www.stonewall.org.uk/sites/default/files/unhealthy_attitudes.pdf) which was completed by 3,001 health and social care professionals. 28% of respondents to the survey stated that they did not feel that doctors were confident enough to respond to the specific care needs of trans patients, 9% were aware of colleagues experiencing discrimination or poor treatment because they are trans and 7% of respondents openly stated that they would "not feel comfortable" working alongside a trans employee. Transphobic attitudes held by some GPs, nurses and other healthcare professionals needs to be stamped out, through the beefing up of HR led equality and diversity training. With regards to training, the Unhealthy Attitudes Survey found that 72% of respondents had not received any training on the specific healthcare needs of LGBT+ people; only 23% of respondents had received training on the legal rights of trans service-users. Also, only 27% of respondents said they'd received training on the legal rights of trans colleagues. There's definitely room for improvement.
The overall recommendation made by the Women and Equalities Committee was for the NHS to conduct, complete and publish a review of trans healthcare generally. There is also a specific need to improve GIS, recommending that GIS be separated from mental health services and review their"treatment protocols", including the "Real-Life Experience" requirement to have access to surgery. However the Women and Equalities Committee refused to advocate for "on demand services" which made me think that there is still a general reluctance to accept that trans and non-binary people know their own mind and should have a larger stake in talking through procedures necessary to help them to lead their own lives.
NHS England have realised that GIS provision for adults needs to be improved and so have come up with a plan that they believe will make GIS more accessible and efficient. They have put these plans out to consultation and are encouraging trans (and non-binary) patients along with organisations such as Stonewall and GIRES to respond to their plans directly. So I'll offer a few of my own thoughts in this blogpost and encourage readers to consider responding to the proposals whether through YouTube videos, podcasts, blog posts or via NHS England's webpage (https://www.engage.england.nhs.uk/survey/gender-identity-services-for-adults/). It must be noted that this consultation is designed to bring in measures to replace the interim set of rules that were created in 2013 and that there have been 2 attempts to replace these rules which have not managed to progress. The 90 day consultation period (ending on the 30th September 2017) should allow for a range of voices to contribute their opinions about the proposed specifications and hopefully NHS England shall listen and make any necessary changes suggested in feedback.
The Consultation Document:
Firstly, the Consultation Guidance from NHS England admits openly and honestly that GIS for adults need to improve. That includes looking at data collection, creating "quality and outcome measures", increasing capacity within GIS so that more patients can have access to treatment, addressing workforce constraint issues (the lack of specialist nurses, sexologists etc which is apparently primarily the concern of Health Education England), equalising "access to specialised interventions", addressing "infrequency and number of appointments" and revising administrative procedures. I'm glad that NHS England have identified these specific service improvements to focus on but as with everything NHS related these days, I wonder how much it will cost to implement these suggested improvements in England and whether NHS England are truly brave enough to ask for a specific increase in funding to allow these improvements to GIS to happen. No budgetary breakdown is offered in the consultation document itself but I am aware that an additional £4.4m had been invested in 2015/16 specifically for GRS in England. I'd like to know how much is estimated to be invested in GICs generally during the 2017/18 financial year with a breakdown of how much money has been allocated to each GIC for the 2017/18 financial year.
I am delighted to read that the consultation document makes it crystal clear that NHS England will not fund or allow providers of GIS to engage in the promotion of reparative therapy (aka conversion therapy) in any way. The non-surgical specification states that "the practice of conversion therapy is unethical and potentially harmful" and that "conversion therapy" is an umbrella term that includes any "therapeutic approach, or any model or any individual viewpoint that demonstrates an assumption that any gender identity is inherently preferable to another which then aims to get a patient to change their gender identity or suppress it". I hope that all NHS professionals working in GIS can agree with this declaration and that those working in the NHS more generally can regardless of their own private views.
As I've noticed with other recent NHS Consultation documents, there is a desire for NHS services to use advanced technological tools to help in the provision of advice and guidance for patients. I can see that for some trans and non-binary patients, Skype consultations with specialists could be appropriate, especially to discuss the effectiveness of current treatment plans. However, patients who are less comfortable with remote based conversations must still have access to face-to-face discussion appointments.
Referrals for gender reassignment surgery (GRS) on the NHS should on the whole be made through the GIS, provided that the multi-disciplinary teams at the GIS are in agreement that the individual is physically fit to go through GRS. Risk assessment should be the same as for any major form of surgery and should not over-focus on a trans person's "social issues" (those issues shouldn't matter anyways!) The GIS team must listen carefully to the needs of the patient and allow them to trust their own judgement (i.e. on an informed consent basis).
I understand that other NHS professionals who are not specialists (e.g. GPs) may feel reluctant about referring a patient directly for treatment, whether non-surgical or surgical. Training should be provided through Continuing Professional Development schemes to equip GPs with the knowledge they need to support a trans or non-binary patient throughout the initial referral process. My local GP was extremely proactive in finding out about access to my local GIC in Nottingham, ensured that they carried out all of the baseline tests within a fortnight of having had an initial meeting with them and then made the referral to Nottingham only a few days after the results of those baseline tests. My GP treated me with respect, non-judgement and listened to what I had to say, the same attitude that they would have had with any other patient. My GP may have only had a half-hour time slot to see me in (which was pre-planned by the surgery after I made the phone call to discuss GIC access; the receptionist on the phone was courteous and made no judgement). The nurses were equally empathetic; I remember during one baseline test I had to take off my vest and I was very nervous about doing this (I've never undressed in front of someone to that level since before secondary school) but the nurse carrying out the test put my mind at ease and never once referred to me by incorrect pronouns or tried to insinuate I was an "attention seeker" or "misguided" words you read on social media (luckily for me it's a rare occurrence). The service my local GP surgery provided was exemplary.
There is an increasing belief amongst LGBTQIA+ equality groups such as UK Trans Info that self-referral for GIS should be the norm because there is no real need for a GP to be involved in the initial referral process because it may be the case that GPs who have a bias against non-binary patients in particular may not carry out the referral to a local GIS despite an expressed wish by the patient on several occasions. There needs to be reassurances made by organisations such as the General Medical Council, British Medical Association General Practitioners Committee and The Royal College of General Practitioners that any unwarranted obstruction in access to service would lead to a GP facing disciplinary action as it may contravene the Public Sector Equality Duty placed on GP services by the Equality Act 2010. This should satisfy most concerns regarding the referral process.
I wonder whether private clinics should be necessarily ruled out from providing GIS on the NHS, especially if those private clinics have experienced professionals who deliver GIS on a regular basis. That being said I have concerns about increasing outsourcing of services to private sector organisations; Labour voters would not be happy to see more NHS funding being used to fund private sector treatments on a regular basis. What is important to remember here is that NHS Clinical Commissioning Groups (CCGs) should decide what happens in cases where a patient who has been able to afford private surgical treatment then loses their job and can no longer afford to pay for further treatment. Should those patients be automatically ruled out from consideration? I would argue that private patients should be allowed to access a NHS pathway of surgical treatment provided funding is in place from local CCGs to fund it. No patient should be turned away because they started their transition privately.
I agree with the proposal put forward to allow 17 year olds to access adult GIS in England and for the Gender Identity Development Service for Children and Young People (GIDS) to only accept referrals in future up to the age of 16, provided there is capacity in the system to allow 17 year olds to be seen swiftly. 17 year olds have reached past the age of consent (which is 16) and should have access to medical treatment (e.g. hormone replacement therapy) without facing unnecessary delays. I am concerned by the proposal that GIDS should remain responsible for the care of young people who may have "complex or psychosocial conditions" (it's not clear which conditions are included under NHS England's definition in the proposed specifications but it includes conditions such as schizophrenia, obsessive compulsive disorder and anorexia) which are thought to currently prevent them from pursuing physical interventions. I disagree that all psychosocial conditions must be included within this provision- for example, I am not necessarily convinced that a young trans person with ADHD or anorexia should be prevented from considering surgical treatment unless it could be proved beyond reasonable doubt that such treatment would exacerbate the problem. I think that these young trans and non-binary patients should take part in the decision making process when it is clear they have the mental capacity to be able to engage in the process.
Family members should only attend appointments when a trans or non-binary patient has specifically requested they attend with them; clinicians should not be allowed to demand a family member attend an appointment, even if they attempt to justify this on "emotional" grounds. A family member should never be asked to consent on behalf of the patient; a patient who has reached the age of consent (16) should be trusted to make their own decision. Never pressurise a trans or non-binary patient to bring someone with them; they may not have talked about their change in gender identity with family or friends before attending the GIC.
I am sympathetic to the proposal to reduce the number of clinical opinions needed to approve GRS to 1. I understand NHS England's concerns that a Registered Medical Practitioner should be the main clinical opinion sought during the process because they will have access to the patient's current and past hormone therapy data and be able to give their opinion regarding suitability for surgery. However I am also interested in hearing more about the proposal put forward to by the Clinical Reference Group for Gender Identity Services which states that no Registered Medical Practitioner opinion is necessarily needed because the specialist surgery team would examine patient history once they have been admitted into the unit.
I am extremely pleased to note that there is a firm commitment to ensure that all GIS will be available to non-binary and gender-fluid patients should they wish to have access to them, including surgical interventions. Patients definitely have the right to self-expression ("personal autonomy") of their gender identity and presentation/ expression and also be referred to by the correct pronouns and names throughout the process. Regardless of these positive changes, it must be recognised that not every non-binary or gender-fluid person wants to have hormone treatment or surgery and should still have the right to self-identify and legally gain a Gender Identity Certificate without having to go through GIS or to "prove their identity" by going through a panel. Those legal changes are going to be discussed once the results of the national LGBT survey commissioned by the Secretary For Women and Equalities, Justine Greening, have been collected, collated, analysed and evaluated. I think we will all be interested in those findings when they are published (I am presuming this will be early 2018 at the latest).
The 12 month "Lived In Experience" requirement for GRS does seem rather an outdated concept to me personally. Most trans patients will have spent more than 12 months in their acquired gender before they even get to the GRS consultation stage and any consequences that come about as a result of GRS would only occur once the GRS has been undertaken. There is also no way of determining an objective assessment of what the typical "Lived in Experience" is for a non-binary person so non-binary patients who wish to undertake GRS may be barred from accessing GRS based on not fulfilling the current requirement; this contradicts NHS England's stated aim of making GIS equitable for non-binary patients.
It's great to read that there has been a call for applications for more research on GIS from the National Institute for Health Research (June 2017). Improving the objective evidence base may mean that GIS will be commissioned that better meet the needs of patients and if some of the final reports are then made available in the public domain, we will all have a better understanding of how to provide the best level of care and support to trans, non-binary, gender-fluid, genderqueer and agender patients as well as helping to promote self-care where appropriate. That can only be a good thing.
As of yet I am undecided regarding the best prescribing arrangements for hormone replacement therapy for trans, non-binary genderfluid and genderqueer patients. At the moment, the specialist team based at the GIC will assess a patient's needs on an individual basis and then pass on the information to the patient's GP who then take full responsibility "for prescribing and administering the medicine (and to perform standard pre-treatment physical monitoring and laboratory investigations)". There are 3 alternative models that have been suggested regarding the prescribing arrangements for trans, non-binary, genderfluid and genderqueer patients. These are:
I think it is important that specialists make it crystal clear to patients that they may experience a loss of fertility and that they may be able to freeze sperm or eggs but only if their local CCG agrees funding for this; patients cannot demand this service at the moment and it is unlikely that funding will made available in every CCG any time soon.
It's pleasing to see a requirement in the specifications that surgeons must perform a minimum of 20 procedures a year that have been commissioned from the provider and that surgeons are required to demonstrate evidence of Continuing Professional Development and engage at least once a year with their fellow surgeons to share best practice. This group of surgeons will then publish an annual report with data on caseload, outcomes and any complications that have resulted from surgery.
If a trans or non-binary patient requires treatment for complications that have arised as a result of surgery will be able to have treatment provided for up to 18 months after the surgery has taken place; the original surgeon will perform the new surgery.
If a patient does not want to continue treatment with a particular surgeon, they will be referred by the surgeon directly to another surgeon working in a NHS England commissioned surgical unit. The choice of surgeon will be discussed and agreed with the patient.
The Equality and Inequalities Impact Assessment:
The Equality and Inequalities Impact Assessment identifies a number of areas that have been addressed by NHS England in order to improve trans and non-binary patient care:
What's been made clear in the consultation document is that NHS England will not provide surgical and non-surgical treatment to patients whose presentation "primarily relates to intersex conditions" (aka disorders of sexual development) who have expressed a desire to have surgery through the future GIS. This may be because NHS England believes that a standard treatment pathway may not fully take into account specific needs of intersex patients. UK Trans Info have argued that intersex patients should have full access to non-surgical and surgical treatment when they have expressed a wish to undertake such treatment but that they should not feel forced or coerced into undertaking any treatment correctively. They also point out that whilst not most intersex patients will not identify as trans, there are some intersex patients who do publicly identify as trans or non-binary; are they going to be denied access to non-surgical and surgical treatment entirely? If such services are not going to be provided through GIS, where are trans and non-binary intersex patients going to have access to non-surgical and/or surgical treatments? When will NHS England unveil this alternative pathway? How much longer would trans and non-binary intersex patients have to wait to be seen by specialists?Would specialists in the alternative pathway have the contextual knowledge to treat trans and non-binary intersex patients with true respect and dignity? These questions need to be answered and I think a review of intersex patient healthcare is timely and necessary so that healthcare professionals and the public alike understand clearly what will happen.
An interesting response to the NHS Consultation :
Not every organisation is in favour of engaging with the NHS consultation; the main reason being that they do not believe that the current GIS system is acceptable in any way whatsoever. The Edinburgh Chapter of the Action On Trans Health organisation have released their own "Trans Health Manifesto" (https://edinburghath.tumblr.com/) designed to revolutionise the way that trans and non-binary healthcare is delivered: "we demand nothing less than the total abolition of the (Gender Identity) clinic, of psychiatry and of the medical-industrial complex". Instead, there would be:
The overall recommendation made by the Women and Equalities Committee was for the NHS to conduct, complete and publish a review of trans healthcare generally. There is also a specific need to improve GIS, recommending that GIS be separated from mental health services and review their"treatment protocols", including the "Real-Life Experience" requirement to have access to surgery. However the Women and Equalities Committee refused to advocate for "on demand services" which made me think that there is still a general reluctance to accept that trans and non-binary people know their own mind and should have a larger stake in talking through procedures necessary to help them to lead their own lives.
NHS England have realised that GIS provision for adults needs to be improved and so have come up with a plan that they believe will make GIS more accessible and efficient. They have put these plans out to consultation and are encouraging trans (and non-binary) patients along with organisations such as Stonewall and GIRES to respond to their plans directly. So I'll offer a few of my own thoughts in this blogpost and encourage readers to consider responding to the proposals whether through YouTube videos, podcasts, blog posts or via NHS England's webpage (https://www.engage.england.nhs.uk/survey/gender-identity-services-for-adults/). It must be noted that this consultation is designed to bring in measures to replace the interim set of rules that were created in 2013 and that there have been 2 attempts to replace these rules which have not managed to progress. The 90 day consultation period (ending on the 30th September 2017) should allow for a range of voices to contribute their opinions about the proposed specifications and hopefully NHS England shall listen and make any necessary changes suggested in feedback.
The Consultation Document:
Firstly, the Consultation Guidance from NHS England admits openly and honestly that GIS for adults need to improve. That includes looking at data collection, creating "quality and outcome measures", increasing capacity within GIS so that more patients can have access to treatment, addressing workforce constraint issues (the lack of specialist nurses, sexologists etc which is apparently primarily the concern of Health Education England), equalising "access to specialised interventions", addressing "infrequency and number of appointments" and revising administrative procedures. I'm glad that NHS England have identified these specific service improvements to focus on but as with everything NHS related these days, I wonder how much it will cost to implement these suggested improvements in England and whether NHS England are truly brave enough to ask for a specific increase in funding to allow these improvements to GIS to happen. No budgetary breakdown is offered in the consultation document itself but I am aware that an additional £4.4m had been invested in 2015/16 specifically for GRS in England. I'd like to know how much is estimated to be invested in GICs generally during the 2017/18 financial year with a breakdown of how much money has been allocated to each GIC for the 2017/18 financial year.
I am delighted to read that the consultation document makes it crystal clear that NHS England will not fund or allow providers of GIS to engage in the promotion of reparative therapy (aka conversion therapy) in any way. The non-surgical specification states that "the practice of conversion therapy is unethical and potentially harmful" and that "conversion therapy" is an umbrella term that includes any "therapeutic approach, or any model or any individual viewpoint that demonstrates an assumption that any gender identity is inherently preferable to another which then aims to get a patient to change their gender identity or suppress it". I hope that all NHS professionals working in GIS can agree with this declaration and that those working in the NHS more generally can regardless of their own private views.
As I've noticed with other recent NHS Consultation documents, there is a desire for NHS services to use advanced technological tools to help in the provision of advice and guidance for patients. I can see that for some trans and non-binary patients, Skype consultations with specialists could be appropriate, especially to discuss the effectiveness of current treatment plans. However, patients who are less comfortable with remote based conversations must still have access to face-to-face discussion appointments.
Referrals for gender reassignment surgery (GRS) on the NHS should on the whole be made through the GIS, provided that the multi-disciplinary teams at the GIS are in agreement that the individual is physically fit to go through GRS. Risk assessment should be the same as for any major form of surgery and should not over-focus on a trans person's "social issues" (those issues shouldn't matter anyways!) The GIS team must listen carefully to the needs of the patient and allow them to trust their own judgement (i.e. on an informed consent basis).
I understand that other NHS professionals who are not specialists (e.g. GPs) may feel reluctant about referring a patient directly for treatment, whether non-surgical or surgical. Training should be provided through Continuing Professional Development schemes to equip GPs with the knowledge they need to support a trans or non-binary patient throughout the initial referral process. My local GP was extremely proactive in finding out about access to my local GIC in Nottingham, ensured that they carried out all of the baseline tests within a fortnight of having had an initial meeting with them and then made the referral to Nottingham only a few days after the results of those baseline tests. My GP treated me with respect, non-judgement and listened to what I had to say, the same attitude that they would have had with any other patient. My GP may have only had a half-hour time slot to see me in (which was pre-planned by the surgery after I made the phone call to discuss GIC access; the receptionist on the phone was courteous and made no judgement). The nurses were equally empathetic; I remember during one baseline test I had to take off my vest and I was very nervous about doing this (I've never undressed in front of someone to that level since before secondary school) but the nurse carrying out the test put my mind at ease and never once referred to me by incorrect pronouns or tried to insinuate I was an "attention seeker" or "misguided" words you read on social media (luckily for me it's a rare occurrence). The service my local GP surgery provided was exemplary.
There is an increasing belief amongst LGBTQIA+ equality groups such as UK Trans Info that self-referral for GIS should be the norm because there is no real need for a GP to be involved in the initial referral process because it may be the case that GPs who have a bias against non-binary patients in particular may not carry out the referral to a local GIS despite an expressed wish by the patient on several occasions. There needs to be reassurances made by organisations such as the General Medical Council, British Medical Association General Practitioners Committee and The Royal College of General Practitioners that any unwarranted obstruction in access to service would lead to a GP facing disciplinary action as it may contravene the Public Sector Equality Duty placed on GP services by the Equality Act 2010. This should satisfy most concerns regarding the referral process.
I wonder whether private clinics should be necessarily ruled out from providing GIS on the NHS, especially if those private clinics have experienced professionals who deliver GIS on a regular basis. That being said I have concerns about increasing outsourcing of services to private sector organisations; Labour voters would not be happy to see more NHS funding being used to fund private sector treatments on a regular basis. What is important to remember here is that NHS Clinical Commissioning Groups (CCGs) should decide what happens in cases where a patient who has been able to afford private surgical treatment then loses their job and can no longer afford to pay for further treatment. Should those patients be automatically ruled out from consideration? I would argue that private patients should be allowed to access a NHS pathway of surgical treatment provided funding is in place from local CCGs to fund it. No patient should be turned away because they started their transition privately.
I agree with the proposal put forward to allow 17 year olds to access adult GIS in England and for the Gender Identity Development Service for Children and Young People (GIDS) to only accept referrals in future up to the age of 16, provided there is capacity in the system to allow 17 year olds to be seen swiftly. 17 year olds have reached past the age of consent (which is 16) and should have access to medical treatment (e.g. hormone replacement therapy) without facing unnecessary delays. I am concerned by the proposal that GIDS should remain responsible for the care of young people who may have "complex or psychosocial conditions" (it's not clear which conditions are included under NHS England's definition in the proposed specifications but it includes conditions such as schizophrenia, obsessive compulsive disorder and anorexia) which are thought to currently prevent them from pursuing physical interventions. I disagree that all psychosocial conditions must be included within this provision- for example, I am not necessarily convinced that a young trans person with ADHD or anorexia should be prevented from considering surgical treatment unless it could be proved beyond reasonable doubt that such treatment would exacerbate the problem. I think that these young trans and non-binary patients should take part in the decision making process when it is clear they have the mental capacity to be able to engage in the process.
Family members should only attend appointments when a trans or non-binary patient has specifically requested they attend with them; clinicians should not be allowed to demand a family member attend an appointment, even if they attempt to justify this on "emotional" grounds. A family member should never be asked to consent on behalf of the patient; a patient who has reached the age of consent (16) should be trusted to make their own decision. Never pressurise a trans or non-binary patient to bring someone with them; they may not have talked about their change in gender identity with family or friends before attending the GIC.
I am sympathetic to the proposal to reduce the number of clinical opinions needed to approve GRS to 1. I understand NHS England's concerns that a Registered Medical Practitioner should be the main clinical opinion sought during the process because they will have access to the patient's current and past hormone therapy data and be able to give their opinion regarding suitability for surgery. However I am also interested in hearing more about the proposal put forward to by the Clinical Reference Group for Gender Identity Services which states that no Registered Medical Practitioner opinion is necessarily needed because the specialist surgery team would examine patient history once they have been admitted into the unit.
I am extremely pleased to note that there is a firm commitment to ensure that all GIS will be available to non-binary and gender-fluid patients should they wish to have access to them, including surgical interventions. Patients definitely have the right to self-expression ("personal autonomy") of their gender identity and presentation/ expression and also be referred to by the correct pronouns and names throughout the process. Regardless of these positive changes, it must be recognised that not every non-binary or gender-fluid person wants to have hormone treatment or surgery and should still have the right to self-identify and legally gain a Gender Identity Certificate without having to go through GIS or to "prove their identity" by going through a panel. Those legal changes are going to be discussed once the results of the national LGBT survey commissioned by the Secretary For Women and Equalities, Justine Greening, have been collected, collated, analysed and evaluated. I think we will all be interested in those findings when they are published (I am presuming this will be early 2018 at the latest).
The 12 month "Lived In Experience" requirement for GRS does seem rather an outdated concept to me personally. Most trans patients will have spent more than 12 months in their acquired gender before they even get to the GRS consultation stage and any consequences that come about as a result of GRS would only occur once the GRS has been undertaken. There is also no way of determining an objective assessment of what the typical "Lived in Experience" is for a non-binary person so non-binary patients who wish to undertake GRS may be barred from accessing GRS based on not fulfilling the current requirement; this contradicts NHS England's stated aim of making GIS equitable for non-binary patients.
It's great to read that there has been a call for applications for more research on GIS from the National Institute for Health Research (June 2017). Improving the objective evidence base may mean that GIS will be commissioned that better meet the needs of patients and if some of the final reports are then made available in the public domain, we will all have a better understanding of how to provide the best level of care and support to trans, non-binary, gender-fluid, genderqueer and agender patients as well as helping to promote self-care where appropriate. That can only be a good thing.
As of yet I am undecided regarding the best prescribing arrangements for hormone replacement therapy for trans, non-binary genderfluid and genderqueer patients. At the moment, the specialist team based at the GIC will assess a patient's needs on an individual basis and then pass on the information to the patient's GP who then take full responsibility "for prescribing and administering the medicine (and to perform standard pre-treatment physical monitoring and laboratory investigations)". There are 3 alternative models that have been suggested regarding the prescribing arrangements for trans, non-binary, genderfluid and genderqueer patients. These are:
- "A specialist team based at the GIC being responsible for issuing the first prescription" with the data relayed to the patient's GP who takes on responsibility for prescribing then onwards (Option B)
- A specialist team based at the GIC issuing prescriptions for 1 year "or until the patient's endocrine treatment has been stabilised" with the GP prescribes from then onwards (Option C)
- A specialist role being developed for GPs at a Clinical Commissioning Group level (or Sustainability and Transformation Plan level in the future if they get approved) with that dedicated GP issuing prescriptions "for all relevant patients in the area on the recommendation of the specialist team" (Option D).
UK Trans Info (who have far more collective experience of advocating for better trans, non-binary, genderfluid and genderqueer healthcare than myself) have argued that the best model for providing HRT would be Option D because it "allows for the most efficient treatment of trans people in an area without requiring excessive amounts of travel" (http://uktrans.info/nhsconsultation2017). The consultation document does flag up the concern that some trans, non-binary, genderfluid and genderqueer patients may be asked to travel to a different GP practice than their own for the HRT, which may be difficult because they may not have the money available to allow them to travel, especially if they are unemployed. I cannot see a situation where the NHS would be able to routinely help with the costs of travel incurred, especially under the current funding constraints.
However, it must be pointed out that travelling to the local specialist GP's surgery would probably be cheaper and less time-consuming than constantly travelling to the GIC for a year (Option C). The consultation document does also point out that there may be issues trying to attract local GPs to consider taking up the specialist role, which "risks an inconsistent and inequitable approach to care"; will there be enough specialist GPs in rural counties such as Lincolnshire? Lincolnshire would need more than one specialist GP with it being the second largest county in England; one would need to be based in Lincoln to cover North and Central Lincolnshire with another based in Grantham or Boston to cover South Lincolnshire. There may be an issue with succession planning in the future too; what would happen if a specialist GP decided to relocate or retire and there aren't any qualified specialist GPs to take their place to allow for a seamless transition in prescription care? Patients would not accept a lengthy delay in receiving their HRT.
However, it must be pointed out that travelling to the local specialist GP's surgery would probably be cheaper and less time-consuming than constantly travelling to the GIC for a year (Option C). The consultation document does also point out that there may be issues trying to attract local GPs to consider taking up the specialist role, which "risks an inconsistent and inequitable approach to care"; will there be enough specialist GPs in rural counties such as Lincolnshire? Lincolnshire would need more than one specialist GP with it being the second largest county in England; one would need to be based in Lincoln to cover North and Central Lincolnshire with another based in Grantham or Boston to cover South Lincolnshire. There may be an issue with succession planning in the future too; what would happen if a specialist GP decided to relocate or retire and there aren't any qualified specialist GPs to take their place to allow for a seamless transition in prescription care? Patients would not accept a lengthy delay in receiving their HRT.
That being said, Option D could be a blueprint for helping to develop local expertise and GPs in the local area may learn "experientially" about trans healthcare and endocrine management, which would be very beneficial in the long term; in fact, as specialist GPs become more experienced, they may be able to "take on more of the clinical services currently provided by GICs" but it is acknowledged that more funding would be needed to facilitate this decentralisation of services.
UK Trans Info has pointed out that there may be long waiting times for patients and have argued that GPs should be able to give out bridging prescriptions if it takes more than 18 weeks for that specialist to issue the first prescription; the General Medical Council guidance issued last year recommending that GPs offer bridging prescriptions in exceptional circumstances (if they have been self-medicating or to reduce the risk of self-harm or suicide). UK Trans Info agrees with the GMC guidance and believes that any trans, non-binary, genderfluid, genderqueer or agender patient that has been self-medicating when they approach their GP should not be told to stop as is currently the case; instead there should be a bridging prescription made available, with regular monitoring of those trans and non-binary patients who have self-medicated in the past. Not ever GP will feel comfortable with the idea of offering bridging prescriptions without seeking specialist advice and guidance. Zara Aziz, a GP partner in a practice based in north-east Bristol wrote a recent article in The Guardian where she argued that whilst GPs are specialists "in prescribing and monitoring in many clinical areas that ...(they) commonly encounter or that...(they)...have developed an interest in", they do not have such awareness with regards to giving holistic care to patients and it could lead to an increased risk in the number of "complaints and litigation against family doctors", pointed out in guidance provided by the British Medical Association's General Practitioner Committee. Dr Azis argues that handing over most of the responsibility for specialised care to GPs in regards to GIS could lead to other specialised care responsibilities being given to GPs, stretching their time and money further. Dr Aziz wants to see the NHS "commission a robust and accessible GIC locally that can support patients and GPs alike" which would have a multi-disciplinary team in place to provide a holistic service.
I think it is important that specialists make it crystal clear to patients that they may experience a loss of fertility and that they may be able to freeze sperm or eggs but only if their local CCG agrees funding for this; patients cannot demand this service at the moment and it is unlikely that funding will made available in every CCG any time soon.
It's pleasing to see a requirement in the specifications that surgeons must perform a minimum of 20 procedures a year that have been commissioned from the provider and that surgeons are required to demonstrate evidence of Continuing Professional Development and engage at least once a year with their fellow surgeons to share best practice. This group of surgeons will then publish an annual report with data on caseload, outcomes and any complications that have resulted from surgery.
If a trans or non-binary patient requires treatment for complications that have arised as a result of surgery will be able to have treatment provided for up to 18 months after the surgery has taken place; the original surgeon will perform the new surgery.
If a patient does not want to continue treatment with a particular surgeon, they will be referred by the surgeon directly to another surgeon working in a NHS England commissioned surgical unit. The choice of surgeon will be discussed and agreed with the patient.
The Equality and Inequalities Impact Assessment:
The Equality and Inequalities Impact Assessment identifies a number of areas that have been addressed by NHS England in order to improve trans and non-binary patient care:
- Front-line staff need training to be able to treat trans and non-binary patients with respect, including making sure that trans patients are not placed on the wrong sex ward in hospitals and are not excluded from screening programmes. NHS England have decided to "undertake an initial scoping and feasibility study" to address concerns, focussing on "non-specialised services such as gynecology and voice and communication services" that form part of the NHS pathway of care within NHS England's service specification. The data and recommendations made as a result of carrying out this project will then be used to assess how changes can made "across NHS services more generally".
- The proposed specifications do not have an upper age limit for non-surgical and surgical inventions which means that any patient who wishes to be referred to a GIC should be able to receive treatment when the specialist team prescribes it.
- Patients with communication difficulties as a result of co-existing complex physical or mental health conditions or as a result of a learning difficulty (I prefer the term difference) will require additional support from GICs and from their GP. The EIA makes it clear that in both specifications, a tailored individual treatment plan will be provided and allow for "additional assessment consultations" and "additional support services" when appropriate.
- The EIA confirms that patients with a Body Mass Index (BMI) of more than 30 (for genital surgery) will be required to lose weight unless a surgeon has approved surgical invention once a risk assessment has been carried out.
- Trans patients with HIV would have "consistent access to the range of available interventions" which would lead to "more timely assessment, diagnosis and treatment".
- A patient's history of substance misuse would be a factor in determining access to treatment; those with a current addiction to non-prescribed drugs and alcohol it would seem would find it more difficult to access treatment but it's not clear from the consultation document how long a patient would need to be "clean" before being allowed to access non-surgical and surgical treatments.
- There is an under-representation of BAME trans and non-binary people attending GICs and I agree with the EIA conclusion that GIS must be delivered in a culturally appropriate way. I hope that NHS England will take the time to consult with patients and organisations representing the trans and non-binary BAME community to come up with specific recommendations as to how GIS can be made more accessible, including designing training for frontline healthcare professionals to follow. It is good to see NHS England make a specific commitment to improving their data collection procedures to ensure full compliance with the Equality Act Public Sector Duty.
- It's interesting to note from the consultation document that the Trans Mental Health Study (2012) found that most trans patients have no religious affiliation (62%) but out of the remaining 38%, 20% of trans patients identified as Christian. Data Collection carried out by NHS England from GICs in 2016 had the number of patients who had no religious affiliation at 61% and those who were Christian at 21%. Only 35% of patients filled in the "Religion and Belief" field. Despite this, there must be Chaplaincy services available to those trans and non-binary patients who require "pastoral or spiritual care" regardless of their religious belief.
- The proposed specifications should not discriminate on the basis of sexual orientation and frontline healthcare professionals must not pry into a patient's sexual history because it is irrelevant for non-surgical and surgical treatment processes. Where a patient actively chooses to disclose their sexual orientation, this information must be kept strictly confidential.
- GIS must be inclusive and accessible to patients who may not be registered with a GP. It can be difficult for certain patient groups to register with a GP; e.g. a homeless patient has no fixed address and a sex worker may have no proof of address or identity and may be excluded from registering with a GP based on this. NHS England believes that patients must be registered with a local GP because they are currently best placed to "offer healthcare support", prescribe drugs and monitor treatment, especially once "contact with specialist teams has reduced or come to an end". They reiterate that GP surgeries cannot refuse to register a patient because they do not have personal information to hand (there is no statutory requirement to request this). Therefore, patients currently not registered with a GP should be encouraged to register if they wish to access GIS.
The consultation document also identifies other areas NHS England needs to take into consideration. Many trans and non-binary GIS patients have stated publicly that waiting times for initial appointments are far too long. For an initial appointment with Nottingham GIC for example, I was told that 18 months was the standard waiting time and since I was referred in April 2016, I will probably not receive an appointment letter until early 2018 at the earliest. These waiting times are in breach of the NHS Constitution but NHS England insists that the proposals made in this specifications will go some way towards addressing the waiting time issue and that they will focus on recruiting more specialist staff in the future to relieve pressures. James Palmer, in his first blog as the Senior Responsible Officer for GIS (https://www.england.nhs.uk/blog/we-are-meeting-concerns-on-gender-services/) states openly that the 18 Week Referral to Treatment standard will be monitored "throughout the entire trans pathway" with "regular consistent reporting" beginning from 2018 which will allow for "absolute transparency about waiting times".
NHS England also noted in February 2016 that they had a "shortage of suitably qualified staff" (http://www.bbc.co.uk/news/uk-england-35605956) but recruitment and retention of talent is flagged
up as a continuing issue at the beginning of the consultation document. Unless NHS trusts find a way of encouraging more qualified staff to join English GIS, waiting times may remain stubbornly high.
NHS England also noted in February 2016 that they had a "shortage of suitably qualified staff" (http://www.bbc.co.uk/news/uk-england-35605956) but recruitment and retention of talent is flagged
up as a continuing issue at the beginning of the consultation document. Unless NHS trusts find a way of encouraging more qualified staff to join English GIS, waiting times may remain stubbornly high.
The consultation document doesn't specifically address access to services for trans and non-binary patients who are in the criminal justice system. Current evidence states that trans and non-binary prisoners are "routinely segregated" on secure prison wards and denied gender-affirming products whilst in prison which means they are less likely to fulfill the current "Lived In Experience" requirement for surgery. The Department for Justice released guidance (Prison Service Instruction) to prisons on the issue of access to healthcare for trans, non-binary and intersex prisoners which was issued in November 2016 and which came into force on 1st January 2017 (https://www.justice.gov.uk/downloads/offenders/psipso/psi-2016/PSI-17-2016-PI-16-2016-AI-13-2016-The-Care-and-Management-of-Transgender-Offenders.docx). The policy specifically states: "Establishments must ensure that prisoners who have been diagnosed with gender dysphoria have access to the same quality of care (including counselling, preoperative and post-operative care and continued access to hormone treatment) that they would expect to receive from the NHS if they had not been sent to prison." If a prisoner has attended a GIC and has been receiving non-surgical treatment and signals their desire to carry on with their treatment, "it should be continued until the prisoner's gender specialist has been consulted on the appropriate way to manage the prisoner's treatment unless the doctor working in the prison has reasonable clinical grounds for not doing so."
The policy also states that access to private health clinics for prisoners is restricted: "there must be sound and demonstrable clinical reasons for allowing access to private health services. There must be evidence that this will improve the health of the individual and is not based on uninformed personal choice".
When a trans, non-binary or intersex prisoner signals an intention to begin hormone replacement therapy for gender dysphoria, the prison health care team have a responsibility to inform the relevant Clinical Commissioning Group and "request a point of contact for liaison". When a prisoner wishes to undergo GRS, the prison GP must liaise with a consultant directly to accept advice from them. The Governor may also "prepare a report to the consultant as to the practical impact within a prison context" of the prisoner recovering from GRS. The consultation document and specifications do not give guidance on how the referral process for trans and non-binary prisoners may differ as a result of a prison Governor's report intervention, for example.
The policy also states that access to private health clinics for prisoners is restricted: "there must be sound and demonstrable clinical reasons for allowing access to private health services. There must be evidence that this will improve the health of the individual and is not based on uninformed personal choice".
When a trans, non-binary or intersex prisoner signals an intention to begin hormone replacement therapy for gender dysphoria, the prison health care team have a responsibility to inform the relevant Clinical Commissioning Group and "request a point of contact for liaison". When a prisoner wishes to undergo GRS, the prison GP must liaise with a consultant directly to accept advice from them. The Governor may also "prepare a report to the consultant as to the practical impact within a prison context" of the prisoner recovering from GRS. The consultation document and specifications do not give guidance on how the referral process for trans and non-binary prisoners may differ as a result of a prison Governor's report intervention, for example.
An interesting response to the NHS Consultation :
Not every organisation is in favour of engaging with the NHS consultation; the main reason being that they do not believe that the current GIS system is acceptable in any way whatsoever. The Edinburgh Chapter of the Action On Trans Health organisation have released their own "Trans Health Manifesto" (https://edinburghath.tumblr.com/) designed to revolutionise the way that trans and non-binary healthcare is delivered: "we demand nothing less than the total abolition of the (Gender Identity) clinic, of psychiatry and of the medical-industrial complex". Instead, there would be:
- universal access to hormones and blockers through free prescriptions so that trans and non-binary patients can self-medicate
- access to therapy at drop-in clinics or through self-referral
- anonymous blood tests with equipment being delivered through "post or at drop-in endocrinology clinics"
- an end to surgical prerequisites with access to tailored surgery, including access to reversal surgery on demand
- resources for hair removal of any kind
- voice coaching that doesn't "coerce us to alter our voices in ways we do not express a need for"; such coaching should respect accents
- medical training so that self-medicating trans and non-binary patients can carry out research in order to "improve the quality of medications" and "reduce negative side-effects in the long term"
- create research centres and libraries which are organised for and by trans patients with "full funding" being made available for any projects carried out
The initial concern here again would be with funding; how much would it cost to fund the surgeries required, the research collectives and the medical training. Even with the money saved from shutting down GIS (which I am concerned about), I suspect there will be not enough funding available to meet such demands. There are other aspects of the vision document which do not sit well with me, including revoking the medical licences of GIS staff, who are on the whole extremely hard working and passionate and whose knowledge and skills would be needed to help direct training to aid research anyways. There are other elements of the vision statement that I agree with, including the mandatory education about trans and non-binary issues that should at least involve trans people and organisations and the demand for accessible, high quality housing for trans and non-binary people who find themselves unemployed or on in-work benefits. Anyways read the document for yourself; it's thought provoking!
Conclusion:
The two draft specifications that have been offered by NHS England are broadly speaking to be welcomed; there are proposals which will help to provide better standards of patient care for trans, non-binary, genderfluid and genderqueer patients. There is a commitment to reviewing waiting times, a commitment to treating non-binary, genderfluid and genderqueer patients with respect and dignity and for most 17 year olds to access adult GIS so they can begin HRT as soon as possible. There are issues with the specifications with regards access to treatment for patients who have a mental health condition (there needs to be clarity regarding what mental health conditions would necessarily preclude a trans, non-binary, genderfluid or genderqueer patient from being able to go through HRT or GRS). There needs to be much more clarity regarding intersex patients who also happen to be trans or non-binary and their access to GIS. There needs to be a review into surgical procedures that can be offered on the NHS, including the ability to access corrective surgery including when complications have arisen after the 18 month time-frame. The Lived-In Experience requirement needs to be reviewed for effectiveness; if it's impossible to quantify what constitutes what is a "normal" experience for a non-binary person, there's no way a non-binary patient can fulfill the requirement and can therefore not gain access to GRS should they require it. Equally, there is no real way to be socially a man or woman that isn't rooted in gender stereotypes; a trans man can still wear dresses occasionally if they choose even if this isn't typical of all men and this should not impact in any way the validity of that trans man. As UK Trans Info have pointed out, the Lived-In Experience requirement may also be seen as patronising; do trans people need to be taught about the consequences of transitioning? Prescribing service provision needs to be agreed with the consent of all stakeholders involved; Option D may be the ideal but there may be pushback from CCGs in certain areas of the country who believe there can be no special GPs allocated to become specialists in prescribing and offering specialist care and support to patients. I look forward to seeing the results of the survey and conclusions and recommendations drawn and hope that NHS England will be proactive in reviewing and addressing areas of concern within the specifications. Then perhaps we will begin to see GIS that truly provides the highest standards of specialised and effective patient care across England.
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