An Open Letter to NHS England from concerned GIDS Staff

Introduction

This open letter has been produced by representatives of the staff group at the Gender Identity Development Service which is part of the Tavistock & Portman NHS Trust. The letter has been developed as an iterative process and it includes contributions from Clinical Staff, Research Staff and Administration Staff. At the time of publishing, 50 out of 85 members of staff have endorsed the contents of this letter.

On the 28th of July, NHS England announced that following advice from the Cass Review (who were instructed by NHSE to review the commissioning of gender services for children and young people), they would be closing GIDS. NHSE stated they would be “improving and expanding services for children and young people experiencing gender incongruence and gender dysphoria”. Their statement went on to identify an “urgent requirement to stabilise current service provision for patients”.

NHSE released the interim service specifications for public consultation on the 20th of October, 12 weeks after the initial announcement. As of the 6th of February, the date of this letter’s publication, staff are still waiting to hear about whether they will have jobs in the new services.

This Open Letter intends to highlight the concerns we, as clinical, research, and administrative staff, have about the communication and management of the GIDS closure and the impact on patients and staff. We are not commenting on future services, how they are being set up, or how this will be managed after the closure of GIDS.

We feel obliged to raise these issues as we feel that the closure of the GIDS Service has the potential to have an impact on the health and safety of the young people and families with whom we work. We believe that it is in the public interest that such concerns are discussed and managed in an open and transparent way. An open letter format was not our chosen method of engagement, but we currently feel limited in terms of other options. We feel that as a staff group we have raised these concerns by submitting written questions to NHS England. We have not received any detailed response to those issues. We have also escalated those concerns internally using various mechanisms within the Tavistock & Portman NHS Trust. We have not received any detailed response to those issues. We have also raised concerns with the Staff Side Support and Trade Union Representatives to act as advocates on our behalf. These efforts have also failed in eliciting any detailed responses from NHS England.

CLINICAL PERSPECTIVES

NHSE statement regarding GIDS closure: Interpretation of the Interim Cass Report — 28/7/22

NHS commissioning » Implementing advice from the Cass Review

NHSE acknowledged in this statement that the Cass Review “is ongoing”. We are unclear why decisive steps were taken to close the current provision based on the interim report, without waiting for the final report. The Interim Cass report did not recommend that GIDS should be closed, it stated that the current model of a single national provider is not fit for purpose. Given the length of wait for young people to be seen and the inequities in the current system, we would broadly agree with this position. We would like to understand the rationale for closing the current provision before new, regional provisions have been established. It appears that the decisions made by NHSE are in direct contradiction to their stated commitment to improve and expand services, as well as to stabilise current services.

We are concerned that GIDS staff, young people and families have not been adequately consulted as part of the Cass Review. There remains a number of GIDS staff who have requested to speak to the Cass Review team, who have not yet been invited to do so. We have also heard from our stakeholder group of over 30 young people and parents/carers who state they feel there has been a lack of consultation with them. We would like to understand how many current GIDS staff and families have been included in the Cass Review to date, as well as how many people from other sources. We believe it is NHSE’s responsibility to ensure that the review that is guiding their decision-making is operating with transparency and integrity. That has not been our experience so far.

We are concerned that the use of language throughout the statement insinuates poor clinical practice within GIDS, which was not indicated by the Interim Cass Report or the recent CQC inspection. The statement suggests that new services would be “enhancing the focus on quality in terms of clinical effectiveness, safety, and patient experience”; and that “multi-disciplinary teams … will draw in all the appropriate clinical professions to ensure the holistic needs of the child have been fully considered.” Whether intentional or not, these statements have the effect of undermining, misrepresenting, and discrediting the clinical work that is currently undertaken, without evidence to support this view. CQC rated GIDS as “good” in terms of caring and the Cass Review has provided statements in support of the quality of the clinical work undertaken by GIDS clinicians.

In the closure announcement, NHSE stated that “The Tavistock and Portman NHS Foundation Trust … will play a vital role in supporting both Early Adopters as they establish the new services building on their extensive experience of working with this patient group.” They also stated that “The ongoing work of Dr Cass’ review, alongside our experience in establishing the Early Adopter services, will help shape the development of the new model of care, national standards, and a new national service specification”. We find these statements contradictory and disrespectful. It appears that NHSE have assumed, without consultation, that GIDS staff will provide clinical expertise to new providers without offering us clarity regarding our own job security; while simultaneously not including GIDS staff in the list of who will guide the development of the new model of care.

Political influence

As clinicians, we are aware that the provision of healthcare in the UK is increasingly politicised, and gender services for young people is no exception. We saw issues of gender being brought into the Conservative Party Leadership Election debates over the summer, with no apparent consideration of the impact on young people, families, and staff. We are also aware that Rishi Sunak communicated an intention to review the rights of transgender people in relation to the 2010 Equality Act. The first edition of the Interim Service Specifications were published on the 22nd of September 2022 and taken down the following day. No further updates were publicly provided until the 20th of October, 2022, the day that Liz Truss resigned as Prime Minister. We are aware that these delays in the publication of the interim specifications were a direct result of demands that they should be overseen by Government Ministers.

We acknowledge that NHS healthcare and politics are in some ways intrinsically linked, particularly in terms of funding and priorities. However, we are concerned that political agendas around wider debates on the rights of transgender people are impacting on the commissioning and provision of services for young people experiencing distress in relation to their gender. The lack of transparency in this process makes us question to what extent political interference has led to amendments in the service specifications? This is a question that needs to be answered by NHS England.

Misuse of public funds

In January 2021, Clinical Care within GIDS was rated as “good” but due to other concerns the overall rating of “inadequate” was given by the CQC. Following this a suite of workstreams was developed utilising staff from within the service as well as external consultants. This was called the “GIDS Transformation Programme”. At the same time as the Transformation Programme, the Cass Review, instructed by NHSE to review the commissioning of gender services for children and young people, was underway. Throughout the Transformation Programme, staff raised questions about the efficiency of making wide-reaching changes to the running of the service while the Cass Review was ongoing. NHSE and Hilary Cass attended numerous Quality Summits alongside the CQC to monitor the progress of the GIDS Transformation Programme, with full knowledge and oversight of the time, energy, and money going into this work. Following a freedom of information request, we now know that the total cost of paying the external consultants alone was over £1.5 million.

The Transformation Programme has resulted in numerous changes to the running of the service, some of which have yet to be implemented and many of which will now be lost because the service is now closing. We are concerned that the timing of the Cass Review and Transformation Programme has been mismanaged and resulted in an irresponsible use of public funds; taking time, energy, and money away from the day-to-day running of the service, only to result in the service being closed. We would like to know who is taking responsibility for this.

Accountability

One of the main drivers for resorting to an open letter of this nature is that when we have made attempts to communicate with NHSE and establish accountability for decision-making, we have been struck by how opaque the current set-up is. Documents from NHSE, including the statement regarding the GIDS closure and the Interim Service Specifications, point directly to the Cass Review as guiding their decision-making. When we have approached the Cass team with freedom of information requests regarding protocols and processes, they report that they are not subject to freedom of information requests and direct us back to NHSE.

One of the primary concerns of the CQC, and a significant rationale for the decommissioning of GIDS, has been about the waiting list, both in terms of length of wait and the safety of young people on the waiting list. We are concerned that responsibility and accountability for this undeniable issue appears to be being placed solely with GIDS. We take issue with this because the service specifications we are working to, which impact on resourcing and referral criteria, were due to be revised by NHSE in January 2021 and this never took place. Moreover, responsibility for issues that directly impact on wait-times, such as referral criteria, funding, and commissioning of Tier 1, 2, and 3 services to support the Tier 4 Specialist gender service lies with NHSE.

GIDS staff were provided with an opportunity to ask questions directly to NHSE following the closure announcement. We found the meeting frustrating and unproductive. We did not feel that the responses provided answers to the questions posed, and no further response has been provided to the 26 questions sent to NHSE following the meeting (Appendix A).

It concerns us that the working relationships between our commissioners, our reviewers, and us as a clinical service have deteriorated to the point where there is a lack of trust, transparency, and responsiveness. We believe that this will ultimately have a detrimental impact on patient care as it will lead to a demoralised and depleted staff group as well as ill-informed decision-making regarding future service provision.

Employment questions and concerns

Since the announcement of the closure on the 28th of July, we have had no answers to questions regarding staff employment rights, whether our jobs will be transferred into the new services or whether people will be made redundant. This treatment of staff feels disrespectful and is having a direct impact on staff wellbeing and retention.

Uncertainty regarding job stability, as well as uncertainty about the clinical ethos of new services, has led to over 20 staff already electing to leave. This is impacting on staff morale, consistency of patient care, career development, and most importantly patient safety. The reality is that many of our most experienced staff are unlikely to remain in post when being treated with such disrespect, alongside continued uncertainty about job security and retention. If it transpires that the existing clinical, research, and administrative expertise is required in future services, there are likely to be very few staff members remaining to provide this.

While NHSE have elected not to meet with staff to explain the current situation regarding their jobs, the latest news we are aware of is that legal teams have been unable to reach an agreement regarding TUPE (whether staff will be transferred to the new services) because of insufficient information regarding the new services. We are also aware that some of the new services have started, or are due to start, advertising for clinical staff. This would suggest that sufficient information is known regarding the new services. This contradictory information and lack of transparency is unacceptable.

Impact on young people and families

The NHSE announcement to close GIDS in Spring 2023 has created a huge uncertainty and instability for the families we see. There is no information that we can give young people and families on the new services or what to expect in the interim or as part of the transfer process. There is no agreed protocol or staff group for the new services and there has not been any update in timelines since the initial announcement. GIDS staff have also often been tasked with delivering news of the closure to our families, despite this not being a decision taken by GIDS, because NHSE have not had the decency to communicate directly with our current families or those on the waiting list. We feel that making a destabilising announcement on the 28th July that GIDS will be closing, not publishing the interim service specifications until the 20th of October, and still not contacting our current families as well as those on the waiting list, is irresponsible.

Many of our families have been attending the service for years and have established therapeutic relationships with GIDS staff. These relationships will be lost. Many other young people and families are near the end of their assessment process or are reaching an age whereby key clinical decisions are being made. Currently, there is no guarantee that the care plans we agree today will be honoured by future services. Moreover, the pathway to accessing medical interventions is unknown. Some of our families who were happy to work with GIDS with a view to considering accessing medical interventions have told us that they have taken it upon themselves to start treatment privately. This poses risks in terms of medical monitoring of these young people, has a significant financial impact on our families and creates inequity between families who can fund private treatment and those who cannot. Families have explicitly stated that the uncertainty created by the closure announcement and lack of detail around medical interventions in the interim service specifications has led to them accessing care privately.

There is also the issue of young people and families who have recently started, or who may start Initial Consultations (the first assessment session with GIDS). The current situation leaves GIDS clinical staff in the untenable and unethical position of starting an initial consultation with young people when we cannot explain what the outcome of an assessment will be or what options may be available to them. This means that young people and families cannot make informed decisions about their care. All of these issues are having an immediate impact on the current clinical work and feel clinically unsafe.

In December 2020, GIDS clinicians wrote to NHS England and the Trust to advise that their decision to suspend Endocrine Pathways following the initial judicial review (Bell vs. Tavistock, December 2020) would increase clinical risk for our client group. It is the view of many clinical staff that NHS England and the Trust did not take heed of those warnings. In the 2 year time period following this, clinicians saw a significant increase in risks for our client group. And more widely, there was an increase in deaths related to the GIDS service. Many of these individual events have not yet been addressed through the Coroner’s Court and legal processes and therefore no further clarification can be made in relation to those events. And we would note that these events cannot be directly linked to decisions made by NHSE and the Trust; however, the culture of hostility and removal of clinical care pathways cannot be ruled out and in our clinical opinion these are contributing factors to the increase in harm in the patient group. We are concerned that the impact of the recent decision by NHSE on the closure of the service, combined with a lack of information on new service provision could have similar consequences for the young people we work with. We have again raised these concerns with NHSE and the Trust and again we feel that our concerns are not being listened to or acted upon.

We are unclear whether there are any current clinical staff in the Phase One Services with sufficient experience of working in gender. We are also unclear whether there are any Endocrinologists recruited to work in the new services. We are aware that NHSE made a commitment to start opening Regional Hubs in September 2021, but they never materialised. Despite these issues, NHSE have stated that new services will be up and running to take on the waiting list of over 7000 young people as well as our open caseload by Spring 2023. They state that there will be “a smooth and seamless transition for patients to the new Early Adopter services”. We are unclear how this will be safely achieved within the timeframe. And at the time of writing, the Tavistock Trust have still not received the 6 month notice of closure from NHS England.

RESEARCH PERSPECTIVES

The GIDS has been publishing research articles on ethics, theory, practice, retrospective audits, interventions, the service model, updates to practice, instrument generation, letters to editors, and countless other topics of importance since 1999. GIDS staff and researchers have published over 83 research articles in peer reviewed journals in this time, with more in review. We have contributed to building evidence in the field of transgender mental health by attending and presenting at national and international conferences for over 10 years. We have systematically collected data about gender distress, psychological and behavioural wellbeing, traits associated with social communication difficulties, and feelings about the body, alongside other recognised quantitative service metrics. This data is used by clinicians in their assessment and support of young people as well as in published work. We regularly provide our clinicians with updates on the newest research in the field to keep them updated and conduct countless literature reviews on topics requested by them. We also provide them with research inductions to ensure data is collected consistently, and to give them the governance framework, tools, and support to carry out their own research in the service.

The service has a rich history of research. Since Domenico di Ceglie first set up the GIDS in 1989, we have connected with international gender services and published work cross-comparing with these international services. We agreed and set up a standardised collection of questionnaire data between services to collect important psychosocial information about the young people we serve to understand them better (The AGIR Agreement1). Our service specifications contain a clear and dedicated research section to provide, track, and monitor important data to add to a growing evidence base. The service supported the time and resources put in by clinical staff to carry out and supervise research, service evaluations, and quality improvement work alongside research staff and trainee psychologists.

We have an ethical duty, as any researcher knows, to respect our service users opting out of research, and only to collect the data required. To collect more is ethically unfair and burdensome to service users. Our research and data collection adapted according to what was observed clinically, what was shared at conferences internationally, and what we read from the literature from other services. We were responsive to the trends we shared in research pieces alongside our international colleagues. Some work was outside the realms of possibility whilst other work was entirely outside of ethical consideration. The GIDS was not set up to be a research unit and does not have access to sophisticated data collection systems. The patient systems we use are not made for data extraction and analysis. In order to create reports to analyse and share any data, time and effort is needed to work out how a limited system can be used to collect, view, extract, and prepare data. And all of this before the time then required for the write-up alongside clinicians who are completing the work in addition to their clinical duties. The process is sadly not fast, and it is reliant on individuals who are already putting all their time into clinical care, continued data management, and service delivery.

Nevertheless, we developed governance structures and practices inspired by academia; our own standardised research proposal form, a research panel meeting, grant collaboration meetings with the government and with universities, supported research processes for trainee psychologists, further discussions of updates to data analysis with colleagues internationally and regular attendance to Trust research governance meetings. Our research team has a dedicated training manual to ensure consistency across team members. It takes over a month of induction training events to skill up new research assistants through a carefully considered programme; and even longer to start to grasp the uniqueness and nuance of this field of research. They work alongside clinicians to enrich ways of thinking about the data managed, and the research conducted. They have to develop an understanding of the political atmosphere and be conscientious in their considerations of how to disseminate this work. They are experts in this data. They work hard. Every single assistant has worked with care and thoughtfulness. They have enriched the service. They have a wealth of expertise and have not been given any written assurances or clarity about their roles with the closure of the Service.

What we would have liked to have seen was discussion and consultation about research during negotiations about the closure of the Service. To share more about the team’s structures and processes, our knowledge, and our expertise so that important information and data is not lost when the Service finally closes. Our concern is that all of this nuance and careful, ethical consideration in data collection will be forgotten. Navigating this alongside feeling forgotten and insecure about knowing where our jobs will be or how they will look come Service closure is difficult and uncomfortable and could have been mitigated with more open discussion and transparency.

Reference:

1. Dèttore D, Ristori J, Antonelli P, Bandini E, Fisher A, Villani S, De Vries AL, Steensma TD, Cohen-Kettenis PT. Gender dysphoria in adolescents: the need for a shared assessment protocol and proposal of the AGIR protocol. J Psychopathol. 2015 Jun 1;21:152–8.

ADMINISTRATION PERSPECTIVES

Administrative staff in GIDS hold specialist knowledge and skills regarding the safe and effective management of the service as well as how to communicate sensitively with young people and families. We are often the first point of contact that families have with the service and are, therefore, often hearing from families who are distressed, angry, or in crisis. GIDS has a number of complex systems that administrators navigate daily, including our integration with the endocrinology services in London and Leeds; the pathway through to endocrinology, including multidisciplinary meetings; as well as liaison with other agencies, such as social care, CAMHS, and adult gender services.

GIDS administrative staff have not been respectfully held in mind through the process so far. Our specialist knowledge and skills have never been acknowledged by NHSE.

Administrative staff are vulnerable in terms of service closure, and are significantly impacted by job uncertainty, given that most administrative staff have only 1 month’s notice in their contract, if permanent, and many are bank and agency. This does not appear to have been given any consideration by NHSE.

Moreover, administrative staff have been expected to handle communication with distressed and confused families, wanting answers about their future care. Administrative staff have had no answers to give to families, no contact details for families to seek more information, and a generic complaints email address to provide. GIDS has not made the decision to close the service or publicise the closure without certainty about future services, and yet it is GIDS staff, and predominantly administrative staff, who are seemingly responsible for providing reassurance and information about this to families. This is not good enough.

Administrative staff create clear and containing processes to ensure high standards of patient safety and quality of care. The uncertainty and lack of information regarding service closure has disrupted these processes and impacted on our mental health and wellbeing.

This lack of respect for the administrative team, in particular, has led to an unprecedented departure of staff, leaving the remaining team depleted down to below 50% capacity, further impacting on morale and patient care.

Conclusions

In conclusion, we feel concerned about the way the GIDS closure has been managed and the impact on young people, families and staff. We believe the statements by NHSE that they will be “improving and expanding services”, alongside the identified need to “stabilise current service provision for patients”, are misleading. We feel the lack of information, transparency, and accountability is unacceptable and irresponsible and is having a significant impact on the safety of patients, staff wellbeing, and the service we provide.

We invite NHSE to:

1. Engage and communicate with GIDS staff and service users in an open, honest, and transparent manner moving forward in order to support the safe closure of GIDS and opening of new gender services for children and young people.
2. Acknowledge how the process so far could have been managed better and commit to doing things differently moving forward.
3. Address the critical rhetoric around the GIDS provision that has impacted on staff, young people and families; and acknowledge that much of the responsibility for systemic failures lies outside of GIDS.
4. Demonstrate responsibility and accountability regarding how the management of the GIDS closure has impacted, and will further impact, on patient care and safety.

We look forward to receiving a response.

This letter has been collectively written and contributed to by concerned GIDS staff. 50 out of 85 GIDS staff members actively endorsed this letter, while responses were not received from others.

Appendix A — Questions posed to NHSE by staff on 16th August 2022 that have not yet been responded to as at 7th February 2023. It should be noted that NHSE attended a meeting with GIDS Staff on 7th February 2023. However, the staff group felt that NHS England did not address the majority of questions that were asked of them. And therefore we ask for confirmation on the following;

1. What is your rationale for closing GIDS and what is the new model of care/service spec and the budget for it and how will it be staffed? Have WPATH guidelines been followed?
2. What clinical risks have you factored into your decisions, given what we know about this population and the levels of self harm and suicide?
3. What guarantees can you give our current clients about the continuation of the care plans we have written with them and what work should we continue to offer them during the months leading to closure?
4. When are you going to give staff clear information about our job security in the NHS (TUPE, Redundancy etc)?
5. Has the endocrine Research Protocol you referred to been developed, and by whom?
6. Please can you explain the rationale to close GIDS in Spring 2023 rather than using the 30 years of expertise that exists in GIDS, Leeds and UCLH hospitals, and building on the existing national hubs?
7. What will happen to those currently employed in GIDS? (lack of clear guidance three weeks on from the announcement is already resulting in attrition of staff, which feels like a cynical plan to avoid redundancy payments)
8. What work are you expecting those who continue to work in GIDS to prioritise at the present time given the inevitable, imminent loss of staff?
9. How will closing GIDS increase capacity?
10. Why have our requests over many years for increase in capacity been ignored by yourselves?
11. How will our expertise be used to set up the new services?
12. How realistic are the timescales for setting up new services, winding down current services, and smoothly transitioning current caseloads?
13. Why has your decision been made before Hilary Cass’s final report is completed, and before our follow up CQC inspection?
14. Are you aware that Hilary Cass has not consulted our staff or service users except at the most superficial and tokenistic level?
15. What were the political pressures underpinning your failures to support GIDS in the face of consistent lies from the press?
16. What is the ethical stance of the new service?
17. What is the budget for the new services and how does this compare to our current budget?
18. What are the new services specs and how do they differ from ours? Now within a mental health model, will the new service be “gender affirming” or pathologising Gender Dysphoria as a mental health condition to be treated/cured/converted?
19. How are you going to staff the new sites with staff experienced in youth gender work? How will they be trained, and by whom? And what premises will they use?
20. The principle of No Decision About Me Without Me: How have people participants/experts by experience/ service users been involved in working on plans for the new services? Has the trans community been consulted?
21. How realistic is the plan for early adopter services to be up and running in Spring 2023, and what should we be telling our current clients how they will be safely transferred to the new services?
22. You have stated that the new services “will rely on the expertise of GIDS clinical staff” : what, will our role be in shaping the new services — will you be using the protocols that we have painstakingly developed and implemented over the last year?
23. Will you guarantee that the care plans and pathways we have written for our current clients be honoured (we have particular concerns about those currently on the endocrine pathway and those 17 year olds whom we would usually refer on to adult services and their time on our waiting list be honoured in the adult GIC)?
24. We currently see Families from Wales and the South West in our Bristol hub, how will these families be better served by the new model?
25. Will the current MPRG group continue in its function under the new specs, given the challenge that it is in fact discriminatory, lacking in transparency and accountability?