“Shockingly poor”
Think2Speak response to ‘Gender Incongruence Service for Children and Young People: Service Specification for the National Referral Support Service’ consultation.
NHS England recognised in their response to the consultation on the interim service specification for specialist gender incongruence services for children and young people published in June, that more work was needed on how children and young people could be referred into the service. They are now seeking views on a new specification that defines how referrals are made, how a national waiting list is managed and how transfers are made from the waiting list into the service.
Here are Think2Speak’s responses to their feedback questions, and we want to assure all of the young people and families that look to us to represent them, that we will not stop holding NHSE to account. This specification, and the actual service specification should be showing how NHSE will work to offer timely, affirmative and respectful access to trans supportive healthcare. This is anything but.
Referrals to the waiting list may only be made by general paediatric services or CYP mental health services.
This is wholly unacceptable and will add to already unacceptable delays to access specialist support. Restricting referral avenues; putting more patients through fewer routes; will create additional, unnecessary barriers and backlogs, adding significant amounts of time before being referred for their gender needs.
Waiting times for CAMHS in many areas are in excess of 2 years, and paediatric services wait times are over 33 weeks. Adding these young people to existing caseloads as part of an attempt to shuffle people around before they add to an 8,000 long waiting list is going to negatively impact these already overstretched services.
CAMHS and paediatric services have clearly indicated their lack of training and therefore competency in this field is a cause for concern; this proposal does not take this lack of capacity and confidence into account and the people who will suffer are the children and young people who are already suffering from unacceptably poor access to specialist services.
This is a cynical attempt at misdirection to appear to be helping young people and adding support whilst in reality, it is doing the exact opposite.
Children under 7 years of age will not be added to the waiting list.
With current waiting times for existing young people on the children’s service waiting list in excess of 4 years in reality, notwithstanding the need to get a referral from CAMHS or Paediatric services, and the additional 2/3 year wait this will entail, if those under 7 years old are not allowed to be added to the waiting list, they will not be seen before pubertal changes have occurred.
Prof. Simona Giordano, PhD – “Children and Gender - Ethical issues in clinical management of transgender and gender diverse youth, from early years to late adolescence.”. Regarding the use of PSH, Professor Giordano states: “It is much riskier to not treat someone who will later transition, than to treat someone who will not transition” She also says: “Interruption of puberty reduces the invasiveness of future surgery ….. full biological development creates ‘enormous life-long disadvantages”.
By the time NHSE have finished with specifying additional delays and restrictions to access services, as well as timing out adolescents, they will have reduced the waiting list to zero, which we believe is their intent.
Young people aged 17 years will not be added to the waiting list of the children and young people’s gender incongruence service.
With the added processes that this new specification is detailing, it would take a 14/15-year-old a minimum of 2 years to navigate the additional steps before they were accepted onto the children’s services list.
How are NHS England going to ensure that this time spent is not wasted? Will a referral to adult services at the point that they would be refused onto the children's service list respect their 2/3-year process prior to being refused entry? Or does this simply mean that the majority of young people aged 14/15/16 must simply accept that they will not be seen at all, give up any thought of timely support and suffering without help until they are 17 and request a referral to adult services?
Bearing in mind that adolescents make up the main cohort of young people who need support with their gender identity, it appears that NHSE are attempting to simply stop access to services altogether for young people. Planning in inevitable time-out, and passing the responsibility, and the damage caused to these young people, to adult services to deal with.
Young people who reach 17 years of age while on the waiting list for the children and young people’s gender incongruence service will be removed from that waiting list; and they may join the waiting list of an adult gender service with their original referral date honoured.
The removal from the list of those 17 plus without support other than being told to speak to their GPs is highly irresponsible and is already causing much distress to those affected.
Previously, young adults were moved to the adult service they preferred via a referral process by the Tavistock directly to the GIC; to simply remove them without notice or any guidance is unacceptable, and again appears to be a mechanism to reduce the waiting list without directly addressing these young people's needs.
It is well documented that GPs are often ill equipped and reluctant; in some cases even prejudiced against transgender people; this protocol opens up yet another cohort to potential harm without protecting them in any way.
Role of the pre-referral consultation service.
This (further) additional stage will inevitably add to the existing excessive and unacceptable delays. The current referral by the GPs and other organisations is now replaced by:
Initial reach out to primary care, and assuming the GP is happy and/or aware enough of the way the new service protocol works, a referral is made
Time waiting for CAMHS or a paediatric service appointment (min 33 weeks, potential to be over 2 years)
Following a period of assessment through these services (that are ill equipped and already under resourced and stretched) a referral to the specialist service is made
A further up to 6-month wait to arrange the pre-referral consultation service meeting
A referral to the specialist service is accepted, based upon a criterion that is not clearly explained, and could potentially be denied based upon said criterion
There is no consideration or intent to help young people access specialist services in a timely manner; on the contrary, there are layers of additional processes added before a young person has a hope of getting support with their gender identity. Shockingly poor.
Is there any other element of the service specification you wish to comment on?
Requiring a gender incongruence medical diagnosis for acceptance of a referral, presumably at the point of the pre-referral consultancy meeting (as the criterion has not been adequately explained), is hugely problematic; as noted by WPATH, this indicates a process to ‘triage treatment based on an ability of the child or young person to prove the severity of their gender dysphoria.’
As noted by the BMA ‘Aside from the troubling ethical implications of requiring children and young people to experience or demonstrate distress in order to access care, we question how this element of the specification would work in practice, including who will be responsible for determining what encompasses ‘clinically significant’ distress or ‘significant impairment in social functioning’, and on what evidence any such assessments would be based.’
The BMA have expressed deep concerns about all aspects of the proposals put forward by NHSE, which we echo. We agree with their concerns, and those of WPATH, that these changes will cause irreparable harm and result in increased suicidality and death of gender incongruent young people.
Any other comments?
This proposal is a cynical attempt to deny access to extremely vulnerable children and young people by adding barriers to access care. This proposal, rather than solving the inexcusably poor access to services that young people are experiencing is instead shuffling them around under the excuse of creating process whilst in reality, extending the already unacceptable and inhumane waiting times, currently in excess of 3 years at present but likely to be much longer with over 8,000 young people currently languishing on the list with no hope of short, medium or even long-term access to support and medical intervention.