NHS Arden & GEM National Referral Support Service

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A research project to learn more about the journeys young people take

Every young person who seeks support at our service is unique. Young people come to our service at different ages, from different situations, with different hopes and difficulties.

We work with every young person on a case-by-case basis, supporting them as they explore their gender identity development, with no expectation about what might be the outcome for any given individual.

Some young people may only be with us for a few sessions of exploration and support. Some may stay with us for years to explore their gender identity as it develops.

Some young people who come to us are referred to our endocrinology teams. Those teams may approve access to hormone suppressants (also sometimes called ‘puberty blockers’) for these patients, and later on some of this group may go on to access gender-affirming hormones. All young people accessing these treatments continue exploratory and support work with our psycho-social team. We do not offer any surgery in GIDS.

Some young people go on to adult gender services around the time they turn 18, while others do not.

Possible pathways

Infographic 1: possible pathways through GIDS, up to when young people might be referred to our endocrinology teams

process diagram 1

The diagram shows that young people leave our service at many different points for many reasons, for example if they no longer need our support, or they turn 18 before a referral to endocrine is sought.

Infographic 2: possible pathways, for those young people referred to our endocrinology teams for possible hormone-blocking treatment, from when they are referred to discharge from our service

process diagram 2

The diagram shows that not all young people who are referred to endocrinology access hormone suppressants, and this can be for several reasons. It also shows that once young people have been on hormone suppressants for around a year, and are around 16 years old, they may access gender-affirming hormones. All young people accessing hormone suppressants or gender-affirming hormones must continue exploratory and support work with our psycho-social team.

Research project: looking at two key groups

We wanted to understand the kinds of journeys that young people took through our service, to improve the care and support that we provide, so we analysed key data on two different groups.

These are two different groups of different young people, so the numbers between the groups cannot be directly compared.

Group 1: the pathways of young people discharged in the financial year 2019-2020

Analysing data from this group can tell us things like: what proportion of these young people were referred to endocrinology? What proportion went on to access hormone suppressants? And, what proportion accessed gender-affirming hormones after that? This information is limited to what happens to young people during their time in GIDS, so until 18 or until discharge. We do not have access to their information beyond that point. 

Group 2: the young people that we referred to our endocrinology teams between 1 March 2019 and 4 March 2020.

Analysing data from this group can tell us things like: how many exploration and support sessions did these young people have before visiting our endocrinology teams? How old they were when they joined us? And, how old they were when they were referred to those endocrinology teams?

Please note that the descriptions of these groups and our analysis on this page are written in plain English as far as possible, so not every detail is present – this page and the data on it is not intended to be the basis for academic publication.

Project summary: what do these two groups tell us overall?

  1. There are a number of routes that young people take, and only a small proportion access physical treatment while in GIDS
    • Only 16% of those discharged or with a closing summary in 2019-20 were referred on to our endocrinology clinics for consideration for hormone suppressants during their time with GIDS.
  2. Considerable time is taken before decisions are made
    • On average, there were 10 appointments before referral to endocrinology for blocker assessment in 19/20, and 6.9 appointments before a first endocrinology appointment in group 1.
    • The average time between a first GIDS appointment and hormone blocker approval for group 1 was 13.4 months.
    • The average time between a first GIDS appointment and referral to endocrinology for group 2 was 19 months.
  3. The majority of young people (YP) referred to endocrinology for hormone blocker assessment are 15 years and older
    • The average age of patients referred for blocker assessment in 2019-20 was 15.4 (median 15.8).
    • Patients aged 10 to 13 make up 12% of group 1 and 16% of group 2.

What the numbers say: pathways of young people (group 1)

Group 1: who makes up this group?

This is a group of young people who left the service across the year. This could be for a range or reasons, including things like turning 18 years old, or no longer needing our support.

There were 1,648 patient records in this group. To analyse the data, we randomly selected 312 files from this collection to create a sample to study. This number achieved a 5% margin of error, within a 95% confidence level. This data was extracted from our patient record system, and the files were manually read by six researchers over approximately three weeks.

Group 1: gender assigned at birth

  • Of the whole sample, there were 221 young people assigned female at birth, 89 assigned male at birth, and 2 for whom we don’t have this information (this might be because the information was not in the referral, and they left our waiting list before they had a first appointment with us).
  • Of the 47 young people in the sample who accessed hormone suppressants, 30 were assigned female at birth and 17 assigned male at birth

Group 1: age at initial referral to GIDS

graph - age referred of group 1

Please note: to protect patient confidentiality, and to prevent the identification of individuals, a portion of the graph has been redacted. There were 13 young people in total between ages 5 and 9, and 30 across 17 and 18.

 

Age

Mean

14.7

Median

15

Minimum

5

Maximum

18

Group 1: what proportion of young people went on to our endocrine team?

Less than half of the young people who are supported by GIDs are referred on to our endocrinology clinics for consideration for hormone suppressants during their time with us.

In this group, 49 young people were referred to our endocrinology clinic and had an appointment with them. This is 16% of the total group:

pie chart of yp who accessed endo

 

Group 1: what proportion of young people accessed hormone suppressants and/or gender-affirming hormones?

Of the 49 young people who went to our endocrine clinic:

  • 2 never accessed hormone suppressants
  • 47 accessed hormone suppressants. Of these 47:
    • 20 only accessed hormone suppressants
    • 27 were approved for or accessed gender-affirming hormones
 

Accessed endocrine clinics whilst in GIDS

Attended clinic, but  never accessed hormone suppressants

Accessed hormone suppressants

Approved for, or accessing gender-affirming hormones whilst in GIDS

# of YP

49

2

47

27

as % YP accessing endocrinology

100%

4%

  96%

  55%

% of total of group 1

16%

0.6%

  15%

    9%

pie charts - young peoples access of interventions at endo

Group 1: where did young people go next?

  • 216 out of 312 (69%) transfer to adult gender services when they left GIDS
  • 96 out of 312 (31%) did not transfer to adult gender services when they left GIDS

Group 1: what age were those young people who were approved for hormone suppressants, when this was approved?

bar-graph-age-at-approval

Please note: to protect patient confidentiality, and to prevent the identification of individuals, a portion of the graph has been redacted. There were 8 young people in total between ages 12 and 14.

 

 

Age

Median

16.7

Mean

16.3

Minimum

12.6

Maximum

17.9

 

What the numbers say: young people referred to our endocrinology teams in 2019-20 (group 2)

Group 2: who makes up this cohort?

Between 1 March 2019 and 4 March 2020, 170 young people were referred to our endocrinology teams.

As well as possible hormone-suppressing treatment, young people can be referred for other reasons: for example checking which stage of puberty they are in.

Between 1 March 2019 and 4 March 2020, 160 young people were referred to endocrinology for assessment to access hormone suppressants.

Group 2: gender assigned at birth

There were 107 young people assigned female at birth, and 63 assigned male at birth.

Group 2: age at initial referral to GIDS

On average these young people were initially referred to GIDS at age 12.7; however, the range was wide, from 4 to 16 years of age.

age at referral to GIDS group 2

Please note: to protect patient confidentiality, and to prevent the identification of individuals, a portion of the graph has been redacted. There were 13 young people in total between ages 4 and 8.

Group 2: age at initial referral to our endocrine teams

For the 160 young people referred for possible accessing of hormone suppressants, the average age at initial referral to our endocrine teams was 14.9, with a median age of 15.

age at referral to endo group 2

Please note: to protect patient confidentiality, and to prevent the identification of individuals, a portion of the graph has been redacted. There were 4 young people in total between ages 10 and 11, and 16 between 17 and 18.

 

Age

Minimum

10

Maximum

18

Median

15

Mean

14.9

 

Group 2: number of appointments before initial referral to our endocrine teams

Using clinical records, this audit counted the total number of GIDS appointments with the young person before referral to endocrinology for consideration for hormone suppressants.

The average number was 10 appointments, with a median of nine appointments.

graph - number of appts before referral to endo

 

Appointments

Median

9

Mean

10

Minimum

3

Maximum

30

 

Group 2: time from first appointment to referral to the endocrine team

Young people from this group met with their GIDS clinicians, on average, for 1.56 years before referral to endocrinology for possible hormone suppressants. The median is just over 1 year, with the minimum time being 15 weeks.

time between first appt and referral to endo

 

Weeks

Years

Median

58.6

1.12

Mean

81.3

1.56

Minimum

15.0

0.29

Maximum

364

6.98

Group 2: once at the endocrinology clinic, how long for approval for hormone suppressants

At the endocrinology clinic, endocrinologists and other experts work with each young person to assess whether they are ready to access hormone suppressants. This includes the process of obtaining consent for these treatments. Exploration and support sessions with GIDS clinicians continue alongside these appointments at the endocrinology clinic.

On average, there were 17 weeks from the start of the medical assessment (first endocrine clinic appointment) to the point of approval from endocrine clinic for hormone suppressants. As GIDS does not prescribe hormone suppressants (this is most often done locally for example by their GP), the exact dates of starting treatment for each young person cannot be known.

graph: time from referral to endo suppressant approval

 

Weeks

Years

Median

16.0

0.31

Mean

18.5

0.35

Minimum

  6.0

0.12

Maximum

39.0

0.75

Project summary: what do these two groups tell us overall?

  1. There are a number of routes that young people take, and only a small proportion access physical treatment while in GIDS
    • Only 16% of those discharged or with a closing summary in 2019-20 were referred on to our endocrinology clinics for consideration for hormone suppressants during their time with GIDS.
  2. Considerable time is taken before decisions are made
    • On average, there were 10 appointments before referral to endocrinology for blocker assessment in 19/20, and 6.9 appointments before a first endocrinology appointment in group 1.
    • The average time between a first GIDS appointment and hormone blocker approval for group 1 was 13.4 months.
    • The average time between a first GIDS appointment and referral to endocrinology for group 2 was 19 months.
  3. The majority of young people (YP) referred to endocrinology for hormone blocker assessment are 15 years and older
    • The average age of patients referred for blocker assessment in 2019-20 was 15.4 (median 15.8).
    • Patients aged 10 to 13 make up 12% of group 1 and 16% of group 2.

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