PCOS diagnosis

​​​Request ​755199787

A. Epidemiology & Diagnosis

- Number of women with an official PCOS diagnosis (annually and cumulative broken down by age group). 

- Diagnosis rates by year over the past 10–15 years. 

- Age at diagnosis (median and range). 

- Ethnic background and socioeconomic breakdown of diagnosed women (if collected). 

- Number of women with PCOS coded in primary care vs secondary care (to see where cases are managed). 

B. Access to Care & Wait Times 

- Average wait times for gynaecology referrals (from GP referral to first appointment, and to follow-up). 

- Referral volumes for suspected PCOS each year. 

- Number of patients referred for fertility support linked to PCOS. 

- Number of diagnostic tests carried out annually (ultrasounds, hormone bloods) related to PCOS. 

C. Treatments and Interventions for PCOS funded by Government symptoms, broken down by type: 

- Menstrual regulation (e.g. hormonal contraceptives, IUDs). 

- Fertility treatments (e.g. ovulation induction, IVF eligibility for PCOS patients). 

- Metabolic management (e.g. metformin prescriptions for PCOS). 

- Dermatological treatments for acne, hair loss, hirsutism. 

- Number of prescriptions issued annually for PCOS-related treatments (metformin, contraceptives, spironolactone, dermatology prescriptions). 

- Availability of funded lifestyle or nutrition support programmes for PCOS patients. 

D. Outcomes and Broader Impact 

- Rates of comorbidities in women with PCOS (e.g. type 2 diabetes, infertility, endometrial hyperplasia, mental health conditions). - Hospital admissions or secondary care episodes coded with PCOS as primary or secondary diagnosis. 

- Number of fertility treatment cycles involving women with PCOS and outcomes (pregnancy rates, live birth rates). 

E. Patient Experience 

(If collected through Gov/Health surveys) 

- Patient reported experience measures for women accessing gynaecology/fertility services. 

- Complaints or feedback logged related to PCOS care.

Response

A

Health and Care Jersey (HCJ) do not hold records on the number of women with a diagnosis of Polycystic Ovarian Syndrome (PCOS) in Jersey, and therefore, are unable to provide data on diagnosis rates per year or demographic information.

As noted in a Freedom of Information response published to www.gov.je in March 2024, there may be women with PCOS who have been diagnosed in other jurisdictions, and those who are managed exclusively in primary care or other tertiary care centres without the involvement of HCJ. Primary Care services in Jersey are private businesses, and as such, their records are not held by HCJ; individuals with PCOS diagnosed and / or managed within primary care will have their diagnoses recorded in the EMIS system. Information in EMIS is held by GPs, rather than by the Government. Whilst the Government of Jersey may be able to interrogate the EMIS system, information is not routinely collated outside of 12 conditions recorded under the Jersey Quality Improvement Framework (JQIF). Therefore, Article 3 of the Freedom of Information (Jersey) Law 2011 applies.

HCJ can identify inpatient admissions where PCOS has been coded as a condition requiring care / treatment or a relevant co-morbidity (see response to Question D, below). There is no database of the cohort of patients diagnosed with PCOS who receive care through HCJ outpatient services, nor are there clinics dedicated to this condition.

B to D

Health and Care Jersey’s waiting list data can be found on www.gov.je at the link below. Separate lists are provided for those awaiting a new (first) outpatient appointment and those awaiting a planned (Elective) admission, and may be filtered by specialty to show the number of people waiting and the waiting time (in weeks). Gynaecology is amongst the specialties available to select to filter the waiting lists.

Median wait and 90th percentile wait values are provided, including a breakdown by referral priority (as triaged).

Hospital Waiting Lists (app Power BI)​

It is not possible to identify those referred for PCOS / suspected PCOS from central records held by HCJ, nor the number of diagnostic tests carried out to investigate / confirm PCOS as a diagnosis. Whilst the indication for referral or investigation will be included in patient letters, notes and test orders, there is no functionality to extract and report upon these data.

Review of all those referred to / under the care of Gynaecology, Endocrinology, Dermatology and the Assisted Reproduction Unit would be required to identify the cohort in scope of this request, with subsequent interrogation of individual records and creation / analysis of the corresponding datasets requested also required. Scheduled Public Authorities are not obliged to create or manipulate data for the purpose of responding to Freedom of Information requests, and manual examination of records would exceed the timescales prescribed in the Freedom of Information (Costs) (Jersey) Regulations 2014. Therefore, Article 16 of the Freedom of Information (Jersey) Law 2011 has been applied.

There is no database of the cohort of patients diagnosed with PCOS who receive care throughout HCJ outpatient services.

Clinical coding of inpatient and Day Case admissions from 2015 to 2024 (inclusive) has been reviewed. Cases of admitted patient care where PCOS has been coded as a condition requiring care / treatment or coded as a relevant co-morbidity have been identified by the diagnosis codes assigned to the episode of care in the Electronic Patient Record.

In the 10 year period from January 2015 to December 2024 (inclusive), 8 inpatient admissions have been identified with a diagnosis code representing PCOS assigned as the main condition treated or investigated during the admission (primary diagnosis). A further 749 admissions have been recorded with a diagnosis code representing PCOS assigned in a secondary diagnosis position, identifying that these individuals have a diagnosis of the condition documented in their medical history.

In total, 342 unique patients have been admitted from January 2015 to December 2024 with a diagnosis code representing PCOS assigned in a primary or secondary diagnosis position.

Admission figures for each year, from 2015 to 2024, are detailed in Table 1 (attached). Data for this response are derived from reporting by discharge date. As such, patients who were admitted prior to 01 January 2015 but discharged after this date will be included. For the same reason, patients admitted prior to 31 December 2024 but discharged after this date will not be included in the numbers.

[LINK Attachment 1]

As noted in previous Freedom of Information responses published to www.gov.je​, details of patient diagnoses / indication for treatment are not recorded against the prescription within HCJ’s Pharmacy dispensing system. Medicines used in the management of PCOS are also prescribed for other conditions, with alternative primary indications. As such, it is not possible to report prescription data for PCOS care / management.

The Assisted Reproduction Unit cannot report data specifically on individuals accessing the service who have a diagnosis of PCOS, though are able to report upon the number of people undergoing ovulation induction with medications used as first-line treatment in PCOS.

Since 2022, 89 individuals have undergone letrozole treatment for ovulation induction through the Assisted Reproduction Unit; 6 of these individuals have accessed funded IVF since January 2025.

Of the remaining 83 people who underwent letrozole treatment, a further 6 have self-funded IVF between 2022 and 2025.

E

Annual data for patient comments, compliments, complaints and enquiries recorded against Gynaecology in the HCJ Feedback Management System from 2015 to 2025 are provided in Attachment 2. No other patient reported experience measures are currently captured centrally for women accessing Gynaecology or fertility services.

[LINK Attachment 2]

The Patient Experience Team comprises of two services; the Patient Advice and Liaison Service (PALS), and the Health Feedback team. Each teams’ function is outlined, as follows:

• PALS give confidential advice, support and information on health-related services or care and are a point of contact for patients, their families and / or carers. This service also manages feedback from patients, relatives, and carers.
• ​The Health Feedback team handle complaints, compliments and concerns.

Articles applied

Article 3 - Meaning of “information held by a public authority”

For the purposes of this Law, information is held by a public authority if –

(a) it is held by the authority, otherwise than on behalf of another person; or

(b) it is held by another person on behalf of the authority.

Article 16 - A scheduled public authority may refuse to supply information if cost excessive

(1) A scheduled public authority that has been requested to supply information may refuse to supply the information if it estimates that the cost of doing so would exceed an amount determined in the manner prescribed by Regulations​.​