GIC Deaths Data since April 2017

Reference: 24-25057

Date response sent: 11/06/2024

Details of enquiry

1. Details (i.e. the name and date of death of the deceased) of all inquests in relation to which the Trust (or the Trust’s Gender Identity Clinic (“GIC”)) has been sent a report under regulation 28 of the Coroners (Investigations) Regulations 2013 – whether it was a named recipient, or just copied – in relation to someone who died while on the GIC’s waiting list, from 1 April 2017 to
2. The number of patients who have been removed from the GIC’s waiting list because they have died (by any cause) since 1 April
3. All analytical products, slide decks or papers addressing the issue of suicide by people in the care of, or on the waiting list for, the GIC.
4. Any operational plans produced by the Trust concerning the risk of suicide by people in the care of, or on the waiting list for, the GIC.

We note that in response to previous requests relating to the number of deaths by suicide amongst patients of the Trust, or of specific services, the Trust routinely withholds the data under s21 FOIA, on the basis that the relevant information is already available in its annual reports, board papers, board meeting minutes, and existing FOI responses – but without identifying or linking to particular documents.

Section 21 permits the withholding of data that is reasonably accessible to the applicant. The fact that an applicant may be able to piece together the information by trawling through hundreds of publicly available documents does not mean that it is “reasonably accessible”. It is well- established that it is not sufficient for a public authority to simply point to a large trove of data where the information may be found – it is required to provide specific references or links.

See, for example:

1. Ames v Information Commissioner and the Cabinet Office [EA/2007/0110],² in which the Tribunal held: “We are not at all sure that, in a case where a public authority is asked for a very specific piece of information which (ex hypothesi) it holds, it would be legitimate for the public authority to say to the applicant that the information is somewhere to be found on a large website like that of the Hutton Inquiry, even if the applicant is someone as well informed as Mr Ames no doubt is. It may be different if the public authority were to provide a link or some other direct reference to where the requested information can actually be found”;
2. the ICO’s Decision Notice FS50140361,³ which held that “if an applicant does not know the title of a particular document being withheld on the basis of section 21 then it follows that it cannot be reasonably accessible to him”, and “Public authorities are under a duty, set out at section 16 of the Act, to ‘provide advice and assistance, so far as it would be reasonable to expect the authority to do so, to persons who propose to make, or who have made requests for information’. In the Commissioner’s opinion this means that there should be no possibility of applicants being left in any doubt as to how they can obtain the information that they want”;
3. the ICO’s decision notice FS50146907,⁴ which found that the Treasury Solicitor “had incorrectly applied section 21 of the Act as it did not provide a precise link or other direct reference to the information and so the information was not reasonably accessible to the complainant… TSol has not been detailed or specific enough about directing the complainant to this information, as it has only stated the general website or publication within which the information may exist…the Commissioner is of the view that it would not be reasonable to expect the complainant to trawl through large databases of complex information on a website containing multiple sources which also hold large volumes of other data”.

As far as we can tell, the information we have requested is not contained in the Trust’s annual reports, board papers, board meeting minutes, and existing FOI responses (of which we have conducted a reasonably thorough review). If the Trust disagrees, please provide links to the particular documents in which the relevant information can be found.

Response sent

1. Details (i.e. the name and date of death of the deceased) of all inquests in relation to which the Trust (or the Trust’s Gender Identity Clinic (“GIC”)) has been sent a report under regulation 28 of the Coroners (Investigations) Regulations 2013 – whether it was a named recipient, or just copied – in relation to someone who died while on the GIC’s waiting list, from 1 April 2017 to

Whenever Inquests are held, linked to a Prevention of Future Deaths report (Regulation 28 Report to Prevent Future Deaths), the name of the deceased will be published and placed into the public domain by a coroner.

The data you have requested under this question may be reached via either of the following publicly available links, one shows data by named deceased, and the other shows a listing by Trust.  This means that as the requested data is publicly accessible via other means, it does not have to be provided again by the Trust.  Accordingly, we have engaged exemption from disclosure under s21 of the Freedom of Information Act 2000.  This is an absolute exemption and does not require a public interest test.

• Reports to Prevent Future Deaths – Courts and Tribunals Judiciary searchable by deceased’s name, and includes where an organisation may have responded
• Reg 28 Reports Tracker Database – Preventable Deaths Tracker

Searchable by any of the fields which sort into alphabetical order, by clicking on any column header.  Also available for reuse as a purchase.

2. The number of patients who have been removed from the GIC’s waiting list because they have died (by any cause) since 1 April

You have asked for 5 years of data, from the GIC waiting list.  The Trust has checked the records of patients who died whilst their referrals were still open and who had zero booked appointments, ie on the waiting list, – and we can confirm that this amounted to a total of 88 GIC patient deaths, from the waiting list and by any cause, over the financial years 2017/18 to 2023/24.

Please note that the Trust reviews all patient deaths – waiting list and open cases and it attempts to ascertain the cause of death in each case. It is often difficult to find out the cause of death in part because GIC is a national service.

The Trust often makes enquiries over several months.  Information on cause of death is needed to better understand mortality in this cohort of patients. However of those deaths where the Trust has been able to ascertain cause it is evident that a significant number of patients die from physical illness/natural causes and that a proportion of deaths are from unnatural causes.

Please note however that Trust no longer reports mortality data by department and by year, however it does report all known deaths across all departments, within publicly available papers as explained below .

• Prior to 2022 we reported mortality data by department within the Quality Reports section of the papers for the Board of Directors Meetings.
• Since 2022, the Trust has changed its presentation of mortality data, and no longer splits its mortality data by department, waiting list, active patients, or any other parameters (see point 1. below for more on this point). This is to prevent the possibility of individuals being identified through triangulation of data, due to the relatively low number of service users who may be referenced.

As your client may already have advised you, we routinely answer FOI requests for Mortality data, (suicide, death by natural causes, death from other causes) by pointing applicants to data that is periodically published and publicly available both in the public domain, and on our website, such as the Annual Reports and Quality accounts, the quarterly Board Meeting papers, and the FOI disclosure log, which may be reached via the links below,  covering patient mortality data across all departments since 2014. These may be reached via the following links:

1. Tavistock and Portman Annual Report & Accounts many may include Quality Accounts Section
2. Tavistock and Portman Quality Accounts    where produced as a separate document
3. Tavistock and Portman Board meetings and board papers on the pages listed below.
4. Tavistock and Portman Freedom of Information Disclosure Log

As explained above, these are publicly available on our website and all are word searchable.  We have engaged exemption under section 21 of the Freedom of Information Act 2000 (FOIA), whereby, we are not required to provide information in response to a request if it is already reasonably accessible to you.

The most effective way to search any documents on our website would be to conduct word searches within the document using key words for your questions such as “death” “suicide” “serious” (as in serious incident), and such a search can be conducted simply by clicking within the website document, pressing CTRL+F and entering your key word (if more than one key word is being searched then enter these between quotation marks), and then view the results one by one.  This would cut out the need, as you have suggested, to read each document in its entirely to seek the requested data.

To be helpful to you, we have conducted this search, and the results we found are as listed below, under points 2.i to 2.iv. Please note that these results cover patient deaths Trust-wide and is not confined to just the GIC.

The rationale for this approach is:

1. The Trust now follows guidance from the Office of National Statistics (ONS) on disclosure control to protect confidentiality within mortality statistics, and the Trust will not report mortality numbers by service, due to risks of identification of the low number of service users referenced.

Practical examples of where this has been applied elsewhere are:

• National Confidentiality Inquiry in Suicide and Safety in Mental Health
• Ministry of Defense Suicides in the UK regular armed forces: Annual summary and trends over time 1 January 1984 to 31 December 2020
• Any statistics that are under five will only be referenced as <5

1. The Trust now complies with “The revised guidance on reporting suicide and severe self-harm to NRLS for all providers except those providing specialist mental health services” issued by the National Patients Safety Agency  (2012).
   • Other providers would meet their responsibilities by ensuring they pass on any information that indicates suicide or self-harm to the relevant specialist mental health trust so they can report it
2. This means that, retrospectively, the Trust’s mortality data can change over time.
   • Due to the nature of its services, the Trust may generally only hold mortality data provided to it, and it may take up to 2/3 years for it to be validated and/or made available to us.
   • A patient’s death may be unrelated to Trust service provision, and due to other causes, eg cancer, natural causes,
3. This means that when the coroner contacts the Trust and states that ‘Action Should be Taken’, the Trust will respond within the required framework

More Data will be Available:  Intended for Future Publication: 

The Trust may hold information on more recent cases which will be published soon, in line with their publication schedules, and withheld from disclosure, for now, under s22 of FOIA 2000 it is intended for future publication.  This is the case for the annual report and accounts for 2022/23 which will be published soon, once it has been laid before the new Parliament

Under section 22 of FOIA 2000, the Trust is not obliged to provide information intended for future publication, subject to the outcome of a public interest test, which weighs up whether the public interest in disclosing the information now, outweighs the public interest in withholding it until its publication date. (NB: Public interest is defined here as for the public good, and not what is of interest to the public, nor the private interests of the requester.)

We have considered whether the public interest in maintaining the exemption is greater than the public interest in disclosing any incremental information now and in response to your request.  We have concluded that it is reasonable to withhold any additional information until it is made publicly available for the following reasons:

Arguments in favour of disclosure:

• Immediate disclosure of most recent mortality data would provide increased transparency via early release of data without incurring delays until formal publication schedules, albeit that deaths by department are no longer provided by the Trust
• Disclosure upon request, of Trust mortality data, would be consistent with the Trust’s intentions to proactively release data on such matters, which are of a wider public interest.

Arguments in favour of maintaining the exemption

• to avoid the possibility of any requestor gaining advantage in obtaining the requested data in advance of its release to general publication
• It is in the public interest that the Trust’s quality assurance process is able to conclude before making mortality information available to the public, to ensure confidence and accuracy.
• It is in the public interest to ensure that any new mortality data can be accessed simultaneously by the general public rather than piecemeal by disclosure to a small number of applicants under FOIA.
• We fully intend to continue to publish more information, as and when we receive new mortality data, in our next and future board and/or quality reports, as well as the FOI, enabling applicants to search these in the manner described earlier and via the links provided above.

The publicly available mortality data, reported on a Trust-wide basis is on our website covering all departments is as follows:

1. Annual Report and Accounts

2018/19 Page 127-128, Page 130

1. Quality Accounts – where produced as separate documents

Quality Accounts Financial year 2020/21 Page 19-20

Quality Accounts Financial year 2021/22 Page 16-19

Quality Accounts Financial year 2022/23 Page 17, Page 19-20

• Board of Directors Meeting Papers

BoD 23/05/2017 Page 58 and Page 67

BoD 28/11/2017 Page 203 and 214

BoD 26/09/2017 Page 164 and 173

Note: From 2018, the BoD meetings went down from a meeting per month, except August, to just the months of May, July, September, November, January & March. The January 2019 meeting was moved to February.

BoD 30/01/2018 Page 6

BoD 27/03/2018 Page 137

BoD 24/07/2018 Page 143-144 and Page 204

BoD 27/11/2018 Page 142 and 162

BoD 12/02/2019 Page 154

BoD 26/03/2019 Page 309-310

BoD 28/05/111 Page 111

BoD 30/07/2019 Page 6 and Page 110 and Page 158

BoD 24/09/2019 Page 117

BoD 26/11/2019 Page 141 and 319

BoD 28/01/2019 Page 98

BoD 31/03/2020 Page 187 and Page 5

BoD 19/05/2020 Page 52

BoD 28/07/2020 Page 74 and Page 88

BoD 29/09/2020 Page 7

BoD 24/11/2020 Page 81 and 168

BoD 26/01/2021 Page 107

BoD 21/03/2021 Page 85-86 and Page 90 and Page 95

BoD 18/05/2021 Page 10 and Page 109 and Page 116

BoD 28/09/2021 Page 8

BoD 30/11/2021 Page 110

BoD 25/01/2022 Page 37 and Page 160-161 and Page 177

BoD 29/03/2022 Page P105 (explanation that Q3 reported death were cumulative over longer period)

BoD 29/03/2024 No new deaths data

BoD 26/07/22 Page 25

BoD 27/09/2022 Page 7

BoD 19/04/2023 Page 50 and Page 59 and Page 62

BoD 21/02/2024 Page 64-65

BoD 09/05/2024  Page 20 (references UK statistics, is not Trust specific)

1. Freedom of Information Disclosure Log

23-24509 Waiting List Deaths 2023 and of which waited 18+ weeks

22-23065-GIDSGIC-Deaths-Whilst-Awaiting-1st-Appt

22-23103-GIDS-GIC-ReferralSuicide-Data-2017-22-1

22-23123-ADHD-Wtg-Diagnosis-Rejects-Deaths

22-23131-Unexpected-Deaths-2018-22

22-23267-Inpatient-Suicides-CAMHS-Deaths16-17to21-22

23-24094-Deaths-related-to-GIDS-1989-to-date

23-24140-Suicides-Waiting-Times-2018-23

23-24509 Waiting List Deaths 2023 and 18+weeks waited

18-19256_Deaths_in_Service_since_2012_of_Nursing_Staff

18-19416_Death__Serious_Incidents_of_Patients_with_Learning_Disabilities

19-20375_GIDS_suicide_rate_2018-19__2019-20

19-20425_Suicide_Prevention

20-21022_Types_Numbers_of_SIs_Reported_2017-18__18-19__19-20

21-22068-GIDS-Suicide-Data-2020-21

21-22121_GIDS_Serious_Incidents_2017-21

23-24240-Gender-Clinic-Discharges-Reasons-2018-23YTD

3. All analytical products, slide decks or papers addressing the issue of suicide by people in the care of, or on the waiting list for, the GIC.

   Description of downloads, which can be found at the bottom of this page.
   a) National Confidential Inquiry into Suicide and Safety in Mental Health   Externally produced UK-wide Findings on Suicide in Mental Health, which covers mortality data from all Trusts.  Slides are not copyright, but any reproduction must preserve the Manchester University data source indication: A presentation to all Tavistock and Portman Staff on May 28th 2024 and 17th June 2024.
   b) Mortality and Learning from Deaths, presented at February 2024 Board of Directors meeting. This overview addresses the issue of suicide alongside other causes of deaths in all services of the Trust. A discussion paper on actions in hand for reporting, reviewing, and where appropriate, investigating deaths.
   c) Audit of deaths GIC 1 April 2022- 31 March 2023 – presented to Quality & Safety Committee on 2^nd November 2023
   d) GIC Learning from Death Workshop, held 12^th December 2024
   e) The Clinical Incident & Safety Group (CISG) reviews all mortality across the Trust, and would action any subsequent learning response, if/as required. The Terms of Reference for this group are embedded here, to be signed off at their first meeting.
   f) PSIRF is a new Trust system for processing and responding to patient safety incidents, to learn from and improve patient safety. It is not specific to suicide nor the GIC, and it manages how the Trust investigates patient safety incidents which include deaths. An introductory presentation to the Trust Board in February 2024 is embedded here.

4.  Any operational plans produced by the Trust concerning the risk of suicide by people in the care of, or on the waiting list for, the GIC.

   The Trust recently held a learning lessons event for all staff, to report on the National Confidential Inquiry into Suicide and Safety in Mental Health. This is freely available and may be republished/reused provided that the accreditations to Manchester University remain in place.  This paper may be reached here:  NCISH | Annual report 2024: UK patient and general population data 2011-2021 (manchester.ac.uk)

5.  

   As far as we can tell, the information we have requested is not contained in the Trust’s annual reports, board papers, board meeting minutes, and existing FOI responses (of which we have conducted a reasonably thorough review). If the Trust disagrees, please provide links to the particular documents in which the relevant information can be found.

   Please see our responses to Question 2 above.

   We thank you for bringing to our attention that some previously published links were unavailable.  This was a temporary state whilst we refreshed our website, as along with all other NHS Trusts, were required to make significant changes to our website over the last few months to comply with equality and accessibility legislation.

   That resulted in some historic documentation, previously available, being temporarily withdrawn (please also note that any public sector organisation can destroy FOI responses after three years, though we have chosen not to do so).

   The documentation temporarily removed included three of the sources of data referred to above, ie Board of Director Reports going back to 2010, Annual Reports and Accounts going back to 2006, and the FOI disclosure log going back to April 2016 for substantive responses provided.

   In view of this, we appreciate why you appear to be under the impression that we do not post, nor like to provide mortality data, which is factually incorrect, and we ask you to accept our apologies for any inconvenience whilst this work was in progress.

   The whole FOI section of the website has now been updated with additional information to assist requesters to submit their requests either via a new on-line form, or via email, or via the post, and provides links to where current data can be found. Please note that links in the archived responses (responses prior to October 2023) may not work as these links may relate to links within our old website, which has since been refreshed to operate different