FOI 2025/1391

Questions:

Under the laws of the freedom of information act 2000, I am writing to you to request the following information.

1. Can you please tell me the number of patients who are currently diagnosed with endogenous Cushing’s disease or syndrome (ICD10 CODES – E240 & E243),  within your Trust/ICB.

2. Total number of Cushing’s patients who received metyrapone, for the following years… (if you are unable to split the patient numbers by year then the total number of patients over the last three years will be adequate)

• 24/25 – financial year
• 23/24 – financial year
• 22/23 – financial year

3. Total number of patients who received a dose of 1.5g or above of metyrapone per dayat any point in their treatment, for the following years… (if you are unable to split the patient numbers by year then the total number of patients over the last three years will be adequate)

• 24/25 – financial year
• 23/24 – financial year
• 22/23 – financial year

4. Total number of patients who received a dose of 3g or above of metyrapone per dayat any point in their treatment, for the following years… (if you are unable to split the patient numbers by year then the total number of patients over the last three years will be adequate)

• 24/25 – financial year
• 23/24 – financial year
• 22/23 – financial year

5. Directly from your local prescribing data from April 2022 onwards what is the median and maximum duration of treatment in months once a patient has started on metyrapone

6. Can you send the local formulary submission form for new non-NICE approved and unlisted by CPAG, rare disease medications. If there is a separate local process for these types of medications, please can you send those details.

7. Can you send the individual patient request form for medications that are not currently on formulary

8. Can you provide the Name and/or contact details of the Meds Management lead for Cushing Syndrome treatments

Request for Clarity 3 October 2025:

I write in response to your recent Freedom of Information request, which was received by NHS Greater Manchester on 26 September 2025.

In order to be able to process your request and provide you with the correct information, I would be grateful if you could you provide the following clarity:

For question 1 the request supplies ICD10 codes. GP data is coded with SNOMED codes, so we need to clarify

A – If they want to use GP data for this query, and if so what SNOMED codes

– or –

B – If they want to use secondary care data for this query

I am sorry we are unable to help you further at this time, and I look forward to receiving the necessary clarity to be able to action your request.

Clarity Received 8 October 2025:

Can we use secondary care data for this enquiry please – (Option B)

Response:

1. NHS Greater Manchester (NHS GM) does not hold the information requested; this is because NHS GM does not have access to the current patient activity in secondary care. Therefore, it will be necessary for you to contact the Secondary Care provider organisations for the information you seek. To assist you please find below links to the Trust’s websites and information about how to make a Freedom of Information request.

Bolton NHS Foundation Trust – Freedom of information – Bolton NHS FT (boltonft.nhs.uk)

Northern Care Alliance NHS Foundation Trust – Freedom of Information Requests :: Northern Care Alliance

Manchester University NHS Foundation Trust – Freedom of Information – Manchester University NHS Foundation Trust (mft.nhs.uk)

Stockport NHS Foundation Trust – Freedom of Information – Stockport NHS Foundation Trust

Tameside and Glossop Integrated Care NHS Foundation Trust – Freedom of Information Requests :: Tameside and Glossop Integrated Care (tamesideandglossopicft.nhs.uk)

Wrightington, Wigan and Leigh Teaching Hospitals NHS Foundation Trust – WWL Teaching Hospitals NHS Foundation Trust | FOI Disclosure Log

The Christie NHS Foundation Trust – Freedom of information disclosure logs (christie.nhs.uk)

2. As explained above NHS GM does not have access to patient level secondary care data and only has access to patient level primary care data where there is little or no prescribing of metyrapone. There were just 14 metyrapone items (Metyrapone 250mg capsules) prescribed in primary care over the 3 financial years 2022-25 with no indication as to whether it had been prescribed for Cushing’s disease or another indication. Therefore, it will be necessary for you to contact the Secondary Care provider organisations for the information you seek, please refer to the response to question 1 for the links to their websites.

3. Please refer to the response to question 2.

4. Please refer to the response to question 2.

5. Please refer to the response to question 2.

6. The ICB follows the Greater Manchester Medicines Management Group (GMMMG) Formulary. The guidance for requests for new formulary additions is found here: Greater Manchester Joint Formulary – GMMMG

7. Patient request forms can be found here https://gmintegratedcare.org.uk/find-a-service/type/greater-manchester-individual-funding-request-service/

8. Please contact the clinical quality team on: gmicb-old.medicinesclinicalquality@nhs.net