Welsh Gender Service: our correspondence

We put questions to public bodies in writing, and we publish what comes back. This page lists every approach we have made to a public body on the pause of gender affirming surgery for Welsh patients, what was asked, and where each stands. We have also sent the published analysis to journalists; that is distribution rather than correspondence and is not listed here.

We are a party to this matter, not a neutral observer. Everything we have asked rests on documents those bodies have themselves published.

Statutory requests

Three of our letters to the Committee are now requests under the Freedom of Information Act 2000. We asked for that route in only one of them. Our letters of 23 and 25 September were written as correspondence and each asked to be treated as correspondence in the first instance; the Committee referred both to Cwm Taf Morgannwg University Health Board, which handles information requests on its behalf. The third we submitted under the Act ourselves, after our letter of 1 September had gone twenty-four days without reply.

We record that without complaint. A statutory request carries a deadline, a right of internal review and referral to the Information Commissioner, and an obligation to state the reasoning for any refusal, provided the request is valid. Whether ours are, signed with a first name only, is an open question, set out below under the letter to Cwm Taf Morgannwg University Health Board’s information request team. Correspondence carried none of those. (Corrected, 10 October 2026: this previously stated these rights without that condition, as did several of our other pages.) But it is worth stating plainly that no letter we have written to this Committee has been answered as a letter: each has either gone unanswered or been redirected into the statutory regime.

Correction, 5 October 2026: an earlier version of this section said four of our letters had become statutory requests, three of them referred by the Committee. Three have, of which the Committee referred two; the third we submitted under the Act ourselves, so it is not a route we can say we did not ask for. The same section said the Committee referred our letter of 25 September on the day we sent it. The referral was made on 29 September.

CTMUHB_584_26

Sent: 25 September 2026
Response due: c. 28 October 2026
Status: Acknowledged 30 September, awaiting response

Four points arising from the Joint Committee meeting of 22 September: when patient communications are expected to conclude and when the terms of reference will be published; how many reviewers had been appointed as at 22 September; which body took the decision, and on what date; and the date on which the twice-weekly senior leadership team meetings began.

We sent this to the Committee’s governance team on 25 September. On 29 September the Committee referred it to Cwm Taf Morgannwg University Health Board, which handles information requests on its behalf, where it was registered as a statutory request.

CTMUHB_569_26

Sent: 23 September 2026
Response due: c. 23 October 2026
Status: Acknowledged 25 September, awaiting response

Four questions arising from the Joint Committee meeting of 22 September: the progression figures and the scope of the pause; whether any equality impact assessment preceded the decision; the source, nature and number of the complaints relied upon; and the decision record, escalation letter and nominated Executive Lead. The letter also asks how the Committee intends to respond to the ten themes into which more than 160 public questions were consolidated.

Correction, 25 September 2026: an earlier version of this page said we had asked the Committee where it publishes its public statements, because we had been unable to find them. That was our error. The Committee has a news section at jcc.nhs.wales/news/ carrying its statements of 4 and 23 September. We should have found it, and we have withdrawn that question.

CTMUHB_574_26

Sent: 25 September 2026
Response due: c. 23 October 2026
Status: Acknowledged 28 September, awaiting response

Eleven items: the decision record; the escalation history; any paper to the Corporate Directors Group and the identity of the Executive Lead; any formal escalation letter to Cardiff and Vale; any record of notification to Welsh Government and Llais; the equality and quality impact assessments together with their creation dates; the analysis underlying the referral-rate finding; any record setting out the referral-appropriateness concerns; the clinical rationale for suspending the surgical pathway; whether the November 2026 cessation of provision at New Victoria Hospital formed part of the considerations; and the terms of reference for the Independent Clinical Review.

Correspondence

NHS Wales Joint Commissioning Committee

Sent: 1 September 2026
Status: No response. Resubmitted under the Freedom of Information Act on 25 September.

Eleven questions about the decision to pause referrals, surgical assessments and scheduled surgery. Sent to the Governance Team, copied to the commissioning directorate responsible for the service and to Cardiff and Vale University Health Board.

Llais

Sent: 1 September 2026
Status: Answered

We asked the statutory body representing people who use NHS Wales services whether it had been notified of or involved in the decision, and whether it had been consulted on the terms of reference for the review. Llais confirmed it had no role in the decision, was formally notified on 1 September, and had not received the terms of reference.

Llais — follow-up

Sent: 7 September 2026
Status: Answered, and corrected

We asked whether the outline of the review’s proposed scope could be shared. Llais checked its records and confirmed, unprompted, that no scope had been shared with it for this review at all. We are grateful for the correction and record it here because it was volunteered rather than extracted.

Llais — reply of 25 September

Received: 25 September 2026, in the thread of our letter of 1 September
Status: We acknowledged it the same day. Nothing outstanding.

Llais wrote to say it is continuing to seek answers from the Committee and is including the responses it receives in its public statements; that it had sent the Committee a further letter that week and would publish an update once it had a response; and that it had been advised the terms of reference would be published that week, but had not yet seen them published. It pointed us to its statement of the same day, “Llais seeks further answers on behalf of people affected by gender-affirming surgery pause”, which says the Committee “is yet to fully answer some of our questions”.

We replied the same afternoon to thank it, and to say that its point that the Committee had not yet fully answered some of its questions was one we had not seen made publicly before. We said no reply was needed.

Added 10 October 2026. This exchange is cited on our commitments page and in our letter of 5 October to Llais, but it was missing from this page, which says it lists every approach. We count it as a reply received and a short acknowledgement, not as a further letter from us.

Llais — the published terms of reference

Sent: 5 October 2026
Status: Answered 12 October. We replied the same day with one further question, awaiting response.

Four points put to the statutory patient body after reading the terms of reference. Whether Llais has now received them, and whether it was consulted on them, having been told on 25 September that they would be published that week. Whether Llais has, or expects to be given, any role in the review: the document sets out how individual patients are consulted about their own cases and how they may raise concerns, but provides nothing for a patient voice in how the review is designed or how its findings are weighed, and does not mention Llais. Whether Llais has seen either of the equality assessments the Committee’s own impact assessment commits it to, the terms of reference referring to neither, nor to equality, the public sector equality duty, or Welsh language provision for patients being assessed. And whether Llais has a view on the stage 3a desktop review, which can defer or remove a patient from the surgical pathway, measured against a published specification that permits referral for patients who smoke or whose body mass index is raised and does not require hormone therapy before chest surgery.

The letter also asks whether Llais has published anything on the pause that we have missed, so that we can link to it rather than leave the record looking as though nothing was said.

Llais’s reply of 12 October. Llais answered each point. It has now received the terms of reference, and it was invited to comment on them before they were finalised. It was sent them on 22 September and submitted its comments the next day. It asked that people’s experiences of the pause be included in the review, and how they would contribute to its thematic work and inform its findings, and was told that people’s experiences will be considered as part of the wider review. On equality, it pointed to the two impact assessments published with the Committee’s September papers, and said it had asked that the review explicitly consider equality, accessibility and broader patient impacts. On the desktop review, it set out its understanding that the reviewers will read a patient’s notes, meet the patient, and then agree the next steps together. It said it had been told the pause will be lifted once the review has concluded and the Committee has received sufficient assurances that the pathway is “safe, clinically robust and supported by appropriate governance arrangements”. It pointed to its statement of 25 September as its latest.

We replied the same day to thank Llais, and asked one question: whether the invitation to comment came before or after 25 September, when it had told us it had not yet seen the terms of reference. We count that reply as a further letter, because it asks something. (Added 12 October 2026.)

Llais answered the same day: it was sent the terms of reference on 22 September and submitted its comments on 23 September. (Added 12 October 2026.)

NHS Wales Joint Commissioning Committee — questions for the meeting of 22 September

Sent: 18 September 2026
Status: Not answered as a distinct item

Four questions submitted under the Committee’s published procedure for questions from members of the public. The chair named five of the ten themes at the start of the item and said he hoped to cover them during it; the meeting closed without returning to them.

NHS Wales Joint Commissioning Committee — points arising from the meeting of 22 September

Sent: 25 September 2026
Status: Referred by the Committee to its information-request team on 29 September and registered as CTMUHB_584_26. See above.

Four questions. When patient communications are expected to conclude and when the terms of reference will be published, the commitment having been restated three times in four days and now carrying no date (note, 10 October 2026: the letter is summarised as sent; it was stated once and restated twice, three times in all). How many reviewers had been appointed as at 22 September, the Chief Commissioner having said three and the clinical director one. Which body took the decision, the Committee’s statement of 4 September saying the Quality, Safety and Outcomes Committee concluded the service should be escalated and the Committee Secretary saying on 22 September that it is not a forum that made the decision — with confirmation also sought of the date, which is given as 24 August in one Committee document and 26 August in another. And the date on which the twice-weekly senior leadership team meetings began.

Note, 10 October 2026: the letter is summarised as sent. The two dates are not in conflict. The Chief Commissioner’s report records the sub-committee endorsing the recommendation on 24 August and the service being escalated on 26 August, so they are the dates of two different events.

Cwm Taf Morgannwg University Health Board, information request team

Sent: 25 September 2026
Status: No substantive response. The name question remains open.

A reply threaded on the health board’s acknowledgement, after the Committee referred our letter of 23 September into the statutory regime. It does three things. It confirms which of our correspondence has been registered as a request. It asks that one part of that letter — how the Committee intends to respond to the ten themes into which more than 160 public questions were consolidated — be returned to the Committee’s governance team, because it seeks a decision rather than recorded information and so is not a matter for the Act.

And our reply raises, unprompted, a defect in our own request. Section 8(1)(b) of the Freedom of Information Act requires a request to state the name of the applicant. Guidance from the Information Commissioner reads that as the applicant’s real name, and treats a request made in a name other than the applicant’s real name as invalid. (Corrected, 10 October 2026: this said the Act itself requires a “real name”. That is the Commissioner’s reading; the Act says “the name of the applicant”. Reworded 11 October 2026: the description of the guidance no longer uses the Commissioner’s word “pseudonym”, which does not describe our requests.) Our requests are signed with the author’s legal first name, without a surname, which may not meet that requirement. (Corrected, 10 October 2026: this said “We publish under a name that is not a legal name”. That was wrong. Eden is the author’s legal first name; her surname is not published. Why.) The health board processes requests without reference to the applicant and uses the term “requester”, which removes the friction in practice but does not cure the defect: a request could be answered in full and its validity surface later, at internal review or at the Commissioner. We said so ourselves rather than wait for it to be raised, cited our ORCID, and offered to supply whatever form of name is required. That offer has not yet been taken up.

Added 5 October 2026. This letter was missing from this page, having been recorded in our internal register but not published here. It is the only place we have put the name question in writing and it belonged on the public record from the start.

NHS Wales Joint Commissioning Committee — the terms of reference, the exit conditions and prioritisation

Sent: 5 October 2026
Status: Awaiting response. One of three questions withdrawn the same day.

Three questions arising from the health board’s revision of 5 October. When the terms of reference would be published. Whether the two differently worded conditions now published — the pause remaining until the Committee is satisfied that the necessary clinical assurance has been received and appropriate arrangements are in place, and referrals restarting once any identified improvements have been addressed — are intended to describe distinct stages, and who determines each. And whether the confirmation sought from NHS England surgical providers about prioritising patients cleared by the review has been received.

NHS Wales Joint Commissioning Committee — correction, withdrawing the first of those questions

Sent: 5 October 2026
Status: Sent within the hour

The first question was misconceived and we withdrew it. The terms of reference had been published on 5 October, on the health board’s website, and announced in a news statement of the same day that we had not found. We had read the removal of the terms-of-reference question from the health board’s FAQs as a commitment being dropped, when it marked that commitment being met. The second and third questions stand and we have asked for them to be answered.

We record this here, and not only in the email, because the error appeared on four of our pages before we caught it. It is set out in full in the commitments tracker and the running record. We inferred a withdrawal from an absence without opening the news listing alongside the page that had changed.

Further correction, later on 5 October 2026: the news listing had in fact been under automated monitoring since 25 September. The monitor was fetching it without running JavaScript, and the listing is assembled by JavaScript, so it captured only the page’s navigation and footer and could never have reported a new item — while reporting no error throughout. It has been rebuilt to render the page in a browser and now reads the article list. We record this because it changes the lesson: the failure was not only that we did not look, but that we relied on an instrument we had not verified.

NHS Wales Joint Commissioning Committee — ten questions arising from the terms of reference

Sent: 5 October 2026
Status: Awaiting response

Ten questions in three groups, with a further point on publication, put after reading the terms of reference published on 5 October. On the scope of the pause and the figures: why masculinising chest surgery remains paused when the document records its progression rate as comparable to English gender services; whether the rate of progression to masculinising genital surgery is the 36% given in the Quality Impact Assessment or the 34% given in the terms of reference; when the absolute patient numbers promised on 17 September will be published; whether the comparator is England or, as the Quality Impact Assessment says, England and Scotland; and what progression rate applies to feminising genital surgery, which is 149 of the 403 referrals and is not mentioned in the document.

On the standards: whether the review framework and the definitions of eligibility, readiness, appropriateness, adequate assessment and insufficient information have been agreed and will be published; whether the criteria for stopping, extending or modifying the review will be published before the interim review at thirty assessments; and by what method the reviewers are to answer the eight service-wide questions on page 9, given that the document itself says a convenience sample cannot provide assurance about the wider service — and how that work is delineated from the separately commissioned Welsh Gender Service Review.

On governance: how many independent clinicians have been engaged and in what disciplines, and whether the commissioners have given the confirmation of resource sufficiency the document asks for; and what arrangements exist for equality, the public sector equality duty, Welsh language provision for patients being assessed, conflict-of-interest declarations by the independent clinicians and the information-governance basis for their access to patient records, none of which the document mentions — together with whether any equality impact assessment has been undertaken in respect of the review itself. Finally, why the document was published on the health board’s website rather than the Committee’s, as both bodies had said it would be. That last point was answered the following morning: on 6 October the Committee published the terms of reference on its own website and said so in a news item. The commitment is met and we record it as such.

Our appraisal of the document is at Clearer safeguards, figures that do not reconcile, and a screening method that needs explaining.

NHS Wales Joint Commissioning Committee — the applicable specification, the desktop review and the equality assessment

Sent: 5 October 2026
Status: Awaiting response

Five questions put after reading the NHS England surgical service specification and the two impact assessments published with the Committee’s papers of 17 September.

Which specification, and which version, the review will apply, the terms of reference naming none, and which version was in force at the dates of the referrals under review. When a Welsh referral was recorded by an NHS England provider as not meeting referral criteria, which criteria were applied and by whom — the published specification providing that for patients who smoke, and for patients with a raised body mass index, “a referral to a surgeon may still be made”. How the stage 3a desktop review will give effect to the specification’s provisions that hormone therapy “is not a pre-requisite” for masculinising chest surgery, that the twelve-month hormone criterion for genital surgery applies “unless the patient has a medical contraindication or is otherwise unable or unwilling to take hormones”, and that a patient holding a Gender Recognition Certificate is eligible for referral “subject to a single opinion” — and by what criteria a patient moves from that desktop review to the full assessment at stage 3b.

Whether the equality assessment “at the outset of the clinical review” that the Committee’s own Equality and Welsh Language Impact Assessment lists as its action has been undertaken, and whether it and the post-review assessment will be published. And whether the 36% in the Quality Impact Assessment and the 34% in the terms of reference describe the same population — patients listed, or referrals made — together with the absolute numbers both impact assessments promised.

The letter also records that our article on the terms of reference, published earlier that evening, contained errors which have been corrected on the page.

NWJCC — our analysis of the published record, four new requests, and a correction

Sent: 6 October 2026
Status: Awaiting response

Sent with The published record, analysed and Where the record stands, so that the Committee saw both before anyone else drew on them. Of the eight requests in the second piece, four repeat questions already put, and we asked that they not be answered twice. Four are new: how people still waiting to be referred will be assessed, and when, since they fall within no stage of the review; whether all of the roughly 60 people whose surgery was due by 31 December will be reviewed, the terms of reference making the second 30 conditional; whether the commitments in the papers of 22 September (an equality assessment at the outset, protection of waiting-list position, and a role for patient groups and Llais) will be written into the review; and whether the Committee will publish a dated, procedure-by-procedure review of whether the pause remains proportionate.

The letter also corrects us. On four of our pages we had said nobody had said who took the decision, or that the only body recorded as meeting on 24 August was one said not to have decided. At the meeting of 22 September the Chief Commissioner said “We took the decision”, and a Joint Committee lay member said the matter had been scrutinised in a private session of the Quality, Safety and Outcomes Committee. We had the recording and missed both. The letter adds that our letter of 25 September asked which body took the decision without referring to the Chief Commissioner’s words, and that the question should be read alongside them.

Note, 11 October 2026: the letter is summarised as sent. The claim had in fact appeared on five of our pages, not four; the fifth was corrected on 10 October, as recorded on our updates page.

Cardiff and Vale University Health Board — the FAQs and the terms of reference

Sent: 6 October 2026
Status: Answered 9 October. We replied the same day, and the thread is closed from our side.

Five points where the health board’s Welsh Gender Service FAQs, as at 5 October, describe the review differently from the terms of reference: the desk review, which the FAQs present as a records check while the terms of reference say it can lead to a patient being deferred or removed from the surgical pathway; who decides; who is reviewed; when referrals restart; and whether every patient reviewed is told the outcome. We said the first is the one most worth putting right. Sent to the address the FAQs give for questions about the pause.

The health board replied on 9 October with a statement from its communications team. It thanked us, said its approach is to explain updates in plain English so that information is clear for patients, and said it will carefully consider the points alongside feedback from other stakeholders. That is a fair answer to most of what we raised, which concerned how a summary simplifies. We replied the same day to say so, and to narrow our concern to one point: the FAQs describe the desk review as a records check, while the terms of reference say it can lead to a patient being deferred or removed from the surgical pathway. That is a possible outcome, not a detail of wording. We said no reply was needed. As at 9 October the FAQs still carry the date of 5 October.

Submissions

Senedd Health and Social Care Committee

Sent: 1 September 2026
Status: Published as SSP112

A response to the committee’s priorities consultation for the Seventh Senedd, proposing that it take scrutiny of national commissioning arrangements as a priority: a periodic evidence session with the Joint Commissioning Committee, a continuously published register of services under formal escalation, and a published impact assessment whenever a commissioning decision restricts access to a pathway.

The committee has published it in full, attributed to Eden Openly as an organisation.

Senedd Equality, Human Rights and Social Justice Committee

Sent: 1 September 2026
Status: Accepted, to be published with the other consultation responses

A response to the committee’s priorities consultation, proposing that it examine how the public sector equality duty is discharged when a public body decides to restrict or withdraw access to a service, rather than when services are designed.

Correction, 27 September 2026: an earlier version of this section opened with a duplicate heading for the Senedd Health and Social Care Committee. Beneath it was the text of our 25 September letter to the Joint Committee, which is recorded in full above. The duplicate has been removed.

What remains unasked

One question has no route. The Quality Impact Assessment published on 17 September records that 97% of patients listed for masculinising chest surgery proceed to surgery, against 36% of those listed for masculinising genital surgery; the terms of reference give 34%, over a differently described population. Of 403 referrals, 201 were for chest surgery and 53 for masculinising genital surgery. (Corrected, 10 October 2026: this said “53 for genital surgery”, and did not give the 34%.) We have asked, three times, on what basis a progression concern specific to the smallest of the three categories supports pausing all three.

The terms of reference published on 5 October record the chest-surgery rate as “comparable to those referred by English gender services”, which answers half of it: the low-progression concern does not attach to that category. What is still not answered is what does, and why referrals for it remain suspended. The document gives a combined rationale for the pause as a whole and does not apply it procedure by procedure.

That question seeks reasoning rather than recorded information, so it does not fall within the Freedom of Information Act. It was put to the Joint Committee for its meeting of 22 September and was not addressed. We have no further route for it.

How we handle responses

We publish what we receive, in full, whether or not it helps our argument. Where a body answers well we say so: Llais answered fully, four times, and corrected its own answer without being asked. (Updated 12 October 2026: this said twice, before its two replies of 12 October.) Where a response is partial we describe what it did and did not cover rather than calling it a refusal.

We do not treat silence as refusal without checking. One of our submissions to a Senedd committee was delivered, showed as opened within four seconds, and was nonetheless caught by a spam filter and sat unread for three days. Delivery is not receipt.

And when we get something wrong, we say so. On 25 September we corrected a claim that the Joint Committee appears not to publish its public statements; it does, at jcc.nhs.wales/news/, and we had failed to find the section. The question we had asked on that point has been withdrawn.

Corrections and queries: [email protected]