GIC Waiting Times Monthly Stats July22-Mar24
Reference: 23-24521
Date response sent: 10/04/2024
Details of enquiry
I am writing to request information concerning the provision/delay of care at the Gender Identity Clinic in London,
- Monthly figures for the period inclusive of July 2022 – March 2024 detailing:
a. Total number of persons on the service’s waiting list;
i. Of this total, the number on the ‘Standard’ waiting list; and
ii. Of this total, the number on the ‘Priority’ waiting list.
b. Number of new persons added to the service’s waiting list:
i. Of this total, the number placed on the ‘Standard’ waiting list; and
ii. Of this total, the number placed on the ‘Priority’ waiting list.
c. Total number of persons seen for first appointments
i. Of this total, the number seen at first appointments from the ‘Standard’ waiting list; and
ii. Of this total, the number seen at first appointments from the ‘Priority’ waiting list.
d. The number of patients who, at the time of their first appointment, had already received a diagnosis of Gender Incongruence/Gender Dysphoria previously— for example, from a licensed physician practicing privately within the United Kingdom or a licensed physician practicing in a person’s former country of residence.
2. For persons assessed at the service from the ‘Standard’ waiting list, please provide the mean and/or median number of days between the following:
a. Placement on waiting list and first appointment;
b. First appointment and confirmation of diagnosis;
c. Confirmation of diagnosis & prescription of HRT;
d. Confirmation of diagnosis & referral for ‘top surgery’; and
e. Confirmation of diagnosis & referral for ‘lower surgery.’
3. While understanding that individual wait times are variable, please provide the service’s current best projection of when a person placed on the ‘standard’ waiting list in the first quarter of 2024 (January – March) can expect to be seen for a first appointment.
4. Given patients’ right under the NHS Constitution to a no-greater-than 18-month wait between a GP’s referral and treatment for ‘non-urgent’ conditions; and given recent Prevention of Future Deaths Reports in which coroners identify very long wait times for youth and adult GIS services as probable contributory factors in the deaths of several transgender persons, please provide details of the plans the Trust / GIC will implement to abide by these patient rights and decrease the time persons spend on the service’s waiting lists. Please provide details of when these plans will be put into effect. Please quantify, if possible, their projected effects on waiting times.
Response sent
- Monthly figures for the period inclusive of July 2022 – March 2024 detailing:
a. Total number of persons on the service’s waiting list;
| GIC Open Referrals July ’22 – Feb ‘24 (Who have not yet had a 1st Appt) |
|||
| Month | 2022 | 2023 | 2024 |
| Jan | 12403 | 14938 | |
| Feb | 12572 | 15086 | |
| Mar | 12803 | ||
| Apr | 12845 | ||
| May | 13333 | ||
| Jun | 13622 | ||
| Jul | 11837 | 13895 | |
| Aug | 11904 | 14103 | |
| Sep | 12032 | 14415 | |
| Oct | 12183 | 14717 | |
| Nov | 12344 | 14853 | |
| Dec | 12231 | 15046 | |
i. Of this total, the number on the ‘Standard’ waiting list; and
Not applicable – there is only one waiting list.
ii. Of this total, the number on the ‘Priority’ waiting list.
Not applicable – there is only one waiting list.
Note: All clinical emergencies are responded to by the secondary care acute and mental health providers for patients who are waiting to be seen by GIC. Any patients waiting, that ring in distress is supported to access their local services, but not prioritised for a gender appointment, as this is currently not considered an acute pathway.
b. Number of new persons added to the service’s waiting list:
| Number of New Referrals Received July ’22-Feb ’24 |
|||||
| Month | 2022 | 2023 | 2024 | ||
| Jan | 308 | 455 | |||
| Feb | 415 | 406 | |||
| Mar | 372 | ||||
| Apr | 203 | ||||
| May | 560 | ||||
| Jun | 389 | ||||
| Jul | 296 | 348 | |||
| Aug | 187 | 303 | |||
| Sep | 192 | 417 | |||
| Oct | 254 | 402 | |||
| Nov | 236 | 424 | |||
| Dec | 228 | 234 | |||
i. Of this total, the number placed on the ‘Standard’ waiting list; and
Not applicable – there is only one waiting list.
ii. Of this total, the number placed on the ‘Priority’ waiting list.
Not applicable – there is only one waiting list.
Note: All clinical emergencies are responded to by the secondary care acute and mental health providers for patients who are waiting to be seen by GIC. Any patients waiting, who ring in distress are supported to access their local services, but not prioritised for a gender appointment, as this is currently not considered an acute pathway.
c. Total number of persons seen for first appointments
| Total number patient’s seen for first appointments July ’22-Feb ’24 | |||||
| Month | 2022 | 2023 | 2024 | ||
| Jan | 48 | 34 | |||
| Feb | 40 | 34 | |||
| Mar | 48 | ||||
| Apr | 55 | ||||
| May | 53 | ||||
| Jun | 50 | ||||
| Jul | 79 | 54 | |||
| Aug | 65 | 48 | |||
| Sep | 64 | 64 | |||
| Oct | 102 | 61 | |||
| Nov | 75 | 71 | |||
| Dec | 28 | 35 | |||
i. Of this total, the number placed on the ‘Standard’ waiting list; and
Not applicable – there is only one waiting list.
ii. Of this total, the number placed on the ‘Priority’ waiting list.
Not applicable – there is only one waiting list.
Note: All clinical emergencies are responded to by the secondary care acute and mental health providers for patients who are waiting to be seen by GIC. Any patients waiting, who ring in distress are supported to access their local services, but not prioritised for a gender appointment, as this is currently not considered an acute pathway.
d. The number of patients who, at the time of their first appointment, had already received a diagnosis of Gender Incongruence/Gender Dysphoria previously— for example, from a licensed physician practicing privately within the United Kingdom or a licensed physician practicing in a person’s former country of residence.
We do hold data on all patients’ previous gender dysphoria diagnoses. Where they are provided by other healthcare agencies, they would be held as notes within individual patient files, which cannot be collated through an automated process.
Despite any previous diagnosis, the GIC service would still conduct a thorough diagnostic assessment of the patients’ presenting needs, as their conceptualization of their gender identity may have changed.
To obtain the number of patients who, at the time of their first appointment, had already received a diagnosis of Gender Incongruence/Gender Dysphoria would therefore require a manual search of search of the records of all patients whose first appointment fell within the period. This would take around 30 minutes per record, ie over 50 hours for just 100 files, which would exceed the resources provisioned under FOIA. Accordingly, we are withholding this data and have engaged s12 exemption. * Please refer to further details on the engagement of this exemption, at the end of our response.
In order to be helpful to you, we have provided below some contextual information about this response. Please note that:
1d.i. we assess/diagnose all our GIC patients ourselves, and a prior diagnosis from any outside healthcare agencies does not qualify any patients to skip or fast track any part of our own assessment, treatment, or diagnosis pathways.
In other words, patients with a diagnosis of Gender Incongruence/Gender Dysphoria prior to their first appointments do not receive quicker access to treatment than those patients without such prior diagnosis, and any such prior diagnosis considered ‘in the round’ along with all other information about the patients.
1d.ii The Trust cannot take responsibility for, nor act upon diagnoses undertaken by other healthcare providers, whether from the UK or overseas, and cannot base recommendations for any treatment plans on anything other than a clear diagnosis by our own GIC clinicians.
1d.iii Diagnoses of GIC patients is always undertaken by our own practitioners and based on results of our own assessment/s, as all our clinicians who ultimately recommend treatments are responsible and accountable for accurate diagnosis and specification of correct treatment (subject to patient agreement to treatment), and this cannot be assured by following any diagnosis from other sources.
1d.iv Assessment and diagnosis of Gender Incongruence/Gender Dysphoria can sometimes be unclear, requiring multiple appointments for exploration, assessment and/or therapy sessions until a clear diagnosis is established. This is not limited to any minimum/maximum number of appointments and is based entirely on patient needs.
- For persons assessed at the service from the ‘Standard’ waiting list, please provide the mean and/or median number of days between the following:
There is only one waiting list for GIC patients. We do not have separate standard and priority waiting lists.
a. Placement on waiting list and first appointment;
| Average Wait Days From
Date Referral Received to 1st Appt attended, July ‘22-Feb ‘24 |
|||||
| 2022 | 2023 | 2024 | |||
| Jan | 1239.29 | 928.71 | |||
| Feb | 1141.93 | 814.03 | |||
| Mar | 1373.48 | ||||
| Apr | 1396.47 | ||||
| May | 1282.17 | ||||
| Jun | 1243.96 | ||||
| Jul | 1137.10 | 1055.57 | |||
| Aug | 1181.69 | 1118.94 | |||
| Sep | 1246.94 | 1172.56 | |||
| Oct | 1180.92 | 1242.07 | |||
| Nov | 1278.95 | 1179.34 | |||
| Dec | 1428.21 | 930.71 | |||
b. First appointment and confirmation of diagnosis;
c. Confirmation of diagnosis & prescription of HRT;
d. Confirmation of diagnosis & referral for ‘top surgery’; and
e. Confirmation of diagnosis & referral for ‘lower surgery.’
We do not hold our data in this way, and the Trust does not measure nor report intervals between first appointment and diagnosis, as this varies depending on the patient. We are unable to extract this data in the way requested, as this would require a manual search of search of the records of the patients above-listed events (ie points b, c, d, e) This would take around 30 minutes per file, ie over 50 hours for just 100 files, which would exceed the resources provisioned under FOIA. Accordingly, we are witholding this data and have engaged s12 exemption.
* Please refer to further details on the engagement of this exemption, at the end of our response
NB: The endocrine team make recommendations to the patient’s GP to prescribe HRT. They do not prescribe directly from the clinic. It is only at the point that the patient or GP confirm that they have commenced hormone therapy that the endocrine team would offer appointments to review, at recommended intervals.
We do however hold data relating to the interval between first and second appointments.
Patients are assessed, diagnosed, and treated, based on their specific individual needs. They are not a homogenous group, not amenable to predictive timelines regarding when interventions are offered and taken up, as this requires several physical health as well as psychological assessments before a clear diagnosis is established.
In addition, every stage of the pathway, informed by the patient’s desired outcomes, is subject to a rigorous assessment process before a clinical recommendation is made. Given such wide variances, any manual calculation of the average interval variances would be inaccurate as well as not meaningful.
Each patient’s electronic record contains details of what the endocrine team have recommended to the patient and their prescriber (typically their GP) under the NHS Shared Care Protocol.
The events listed under 2b, 2d, and 2e above are noted within the patient record’s free text notes section , so whilst a clinician seeing an individual patient would have ready access to this data, we would not be able to report this data collectively nor in bulk through any automated process, as it is not located within dedicated data fields, and would need to be manually located/extracted and collated, and then manually averaged, for each of the years. At around 30 minutes per file, this would take over 50 hours for just 100 files, which would exceed the resources provisioned under FOIA. Accordingly, we have engaged s12 exemption and will not be providing datato answer parts 2b-2e of this question any further. * Please refer to further details on the engagement of this exemption, located at the end of this response.
Whilst we cannot provide the data requested for most parts of question 2 above, you might find it helpful to read, as follows, about the variable nature of intervals between stages of the GIC patient pathway.
i. all our treatments are tailored to the individual, whose needs and expectations can vary enormously, so neither treatment, nor recommendations for prescriptions, nor referral to external healthcare providers for surgery, can follow a set number of appointments, nor a roughly similar set or sequence of intervals. Each stage can vary up to 10 years, due to the variable complexity of the endocrinology and surgical pathways, which cannot be predicted, and impacts our ability to accurately estimate waiting times for those on our waiting list.
ii. initial diagnoses can often be unclear because assessment and diagnosis does not always follow a defined number of appointments; and may require ongoing exploration and/or one or more courses of therapy before determination of a clear diagnosis.
It is only once a clear diagnosis has been confirmed, that any next steps in the patient’s treatment pathway can be discussed and agreed between clinician and patient, so, for example, the start of endocrine treatment is the point at which there is a clear diagnosis, and that endocrine treatment is physically safe in the combined judgement of both patient and clinician and that, on balance, it is better for that treatment to proceed at that point.
iii. Referral to endocrinology and surgery may not immediately follow completion of the assessment process, as this would be dependent on the patient’s physical health as well as preparedness for their desired pathway.
The pathway to access endocrinology and surgery is not linear, it is based on individual need and does not lend itself to consistent measurability of time from diagnosis, as has been requested.
iv. Very often, patients will wish to preserve their fertility and so hormone treatment cannot start until that has been either achieved or relinquished.
- While understanding that individual wait times are variable, please provide the service’s current best projection of when a person placed on the ‘standard’ waiting list in the first quarter of 2024 (January – March) can expect to be seen for a first appointment.
As stated previously, we only operate one waiting list for the GIC. Any estimate on waiting times for new referrals would be inaccurate, due to the (yet unknown) impact of mitigating actions instigated and implemented by NHSE, for which the Trust does not hold complete data, and other plans by the Trust, – all of which are explained below in our response to Q3.
In addition, we understand from NHSE, that we are not outliers, as other adult gender clinics (GICs) are in a similar position to ourselves and unable to accurately predict waiting times.
We can only make best estimates drawing data from past performance, so if someone joined the waiting list between January to March 2024, then, – with no mitigating actions taking place to shorten waiting times (from a January 2024 waiting list total then of 14,906 patients), it is likely that their first appointment would be in around 5 years’ time. This is based on January 2024 first appointments being offered to patients who joined the waiting list in December 2018, as currently shown on our website: Waiting times – Gender Identity Clinic – GIC
Please note that the above estimate of 5 years is not static, as it is part of the continual service improvement processes, as explained at Question 4 below.
We anticipate that we will, in future, have incremental visibility of waiting times, subject to ratification of an improvement plan, and subject to significant change and recalibration as the service develops and implements mitigating pipeline actions as part of the continual service improvement processes.
Other Factors Impacting Waiting Times:
- The above waiting time estimate does not include patients graduating from children’s gender services, on an endocrinology pathway, as they are prioritised at the point of transfer.
- It also does not include adults who have a date for surgery that requires an urgent surgical refresher review outside of the planned review appointment cycle.
- Another group of people that may impact waiting times for first appointments is young people on the Children and Young People’s gender services waiting list with Arden and GEM (Arden and Greater East Midlands Commissioning Support Unit) who will also be referred into one of the GIC services on turning 17 years of age . https://www.ardengemcsu.nhs.uk/
- please provide details of the plans the Trust / GIC will implement to abide by these patient rights and decrease the time persons spend on the service’s waiting lists. Please provide details of when these plans will be put into effect. Please quantify, if possible, their projected effects on waiting times.
Our Trust’s strategy for reducing the waiting times for our GIC is to both increase total clinical capacity and to improve flow and release more clinical capacity:
4.1 Increasing Clinical Capacity
a. Increasing clinical capacity through staff recruitment including recruitment to new disciplines such as nursing through Quarter 1 and Quarter 2 of 2024/25.
b. Maintaining clinical capacity by improving staff retention through development of an improved training programme and a focus on staff wellbeing.
4.2 Releasing Clinical Capacity
a. Reducing re-work and negative patient experience by reducing the number of DNA discharges (Did Not Attend) which can become re-referrals.
b. Reducing processing related to patient correspondence.
c. Reducing production related to internal staff communications.
4.3 Procurement of a Digital Health Platform
In tandem with all the above, we are at the final stages of procuring a digital health platform to cover information, health, and psychological education to ensure that patients wanting to access the service are fully prepared for their first appointment. This is intended to improve throughput within the clinical pathway and free up clinicians time to increase the number of first appointments offered.
While Quality Improvement (QI) related to clinic capacity/waiting list uptake has been a focus for the GIC clinic for many years, items 4.1b to 4.2c above in their current form stem back to a focused improvement actions event held in December 2023 and have been actively worked on by the London GIC clinic since then.
These QI projects are scheduled to present initial results around end May 2024, at which point their effectiveness will be reviewed and improvement efforts adjusted accordingly.
Additional workstreams are looking at releasing clinical capacity by improving pathway design, internal data monitoring, and clinician job planning.
We are unable to currently project the potential impact of some of these work streams on waiting times, as a few of the initiatives are at proof-of-concept stage. However, we will be measuring the impact of all actions we take on the waiting times.
Due to internal and external variables, the Trust cannot accurately predict the extent to which waiting times for those referred today may be impacted by the above initiatives.
Whilst your question 4 relates solely to initiatives which this Trust will implement, with the aim of decreasing time patients spent on the service’s waiting list, you might find it helpful to read of initiatives by NHSE, in conjunction with the Trust’s plans, as above, for contextual purposes, which are and will continue to have an impact on GIC clinics waiting times across the country.
4.4 NHSE-led Initiatives for GIC Waiting List Improvement
In August 2023, as part of the Waiting List Improvement Plan, NHS England (NHSE) commissioned, for a period of 2-years, GIC pilot clinics with 7 Trusts with a view to reduce waiting times for adults accessing gender care. NHSE, our Trust, and the pilot clinics have negotiated initial total patient numbers to be transferred to each of three of the pilot clinics, as they mobilise their services. This process can only be enacted subject to patient consent, and it would be down to the pilot clinics to check patient catchment area details, contact them, and explain the transfer options.
It is hoped that the Pilot clinics will receive some of the longest GIC waiters. We do not have details all the pilot clinics, nor when they will all become fully operational. NHSE Specialist Commissioning (National) should be approached directly for any supplemental details on these.
It is important to note that the mitigations stated above are not intended to be exhaustive.
Please note that thoughout this response we have endeavoured to provide you with as full a picture as possible, and have provided, where available, supplemental and contextual detail to our answers, and answered all questions where the Trust could extract the data from an electronically reportable format.
Should you wish to narrow the scope of the questions we have not answered, then the Trust will treat any future submission as a new FOI request.
* Please see next page for further details on the engagement of s12 to withhold data under the Freedom of Information Act 2000.
* Engagement of Exemption from Disclosure: Section 12 of FOIA
Explanation of the Trust’s engagement of FOIA s12 Exemption
The Trust holds the event dates for questions 1d and 2b-e, as freetext within the free-text notes sections of our electronic patient records, which are not electronically searchable. Accordingly we cannot electronically run automated reports to provide median intervals between the requested data points, and these reports could only be produced manually.
To manually extract dates and to then, collate, and calculate intervals for each patient, where present, and produce a median average by year for the period would take around 30 minutes per electronic patient record, so over 50 hours per 100 records, and there would be many hundreds of records to search.
Section 12 of the Freedom of Information Act 2000 (FOIA) makes provision for NHS organisations to refuse requests for information where the cost of processing (which includes determining whether the Trust holds the information, locating, and then extracting it) exceeds £450, or 18 hours of work from one member of staff calculated at a generic rate of £25/hour.
Accordingly, the time required to process questions 1d and 2b-2e fall outside this limit, and so the Trust has engaged exemption from disclosure of this data under s12 of FOIA.