Enhertu for secondary breast cancer patients in the Island?

Summary

A request was made for data on secondary breast cancer patients eligible for Enhertu and details on NICE guideline exceptions, but the Department of Health and Social Care refused to provide the information as it is not held by them.

Key Facts

• The Department of Health and Social Care does not hold the requested information regarding breast cancer patient numbers or Enhertu eligibility.
• The information is likely held by Manx Care, the separate body responsible for service delivery.
• The Department was redesigned on 01 April 2021 following Sir Jonathan Michael's Independent Review to separate policy from service delivery.
• Manx Care uses the Integrated Medicines Optimisation Group (IMOG) for strategic medicines management decisions.
• Manx Care looks to NICE for evidence but has no legal obligation to implement NICE Technology appraisals.

Data Disclosed

• 2024-11-04
• 2024-11-27
• 31st October 2024
• 01 April 2021
• last 5 years
• 19 other countries
• Section 11(3)a
• Section 15
• Part 2

Exemptions Cited

• Section 11(3)a of the Freedom of Information Act 2015 (Information not held)

Original Request

I seek the following information: How many Isle of Man residents are currently being treated for secondary/advanced/metastatic (or any other descriptor for stage 4) breast cancer in the Isle of Man? How many of these patients are clinically eligible for the drug Enhertu, which is available free of charge to patients living in Scotland and 19 other countries but not in England and Wales (ie, how many are diagnosed as ER+, PR+ and HER2 low)? Please provide all and any analysis which has been carried out as to the cost of and benefit to these patients of being prescribed Enhertu free of charge by the Isle of Man health service. On the Mannin Line programme on Manx Radio on 31st October 2024, the Treasury Minister Dr Allinson informed listeners that it is possible for the Island's health service to step outside of the NICE guidelines (he said 'our healthcare system.... doesn't necessarily have to follow NICE guidance') in order to prescribe a particular medication for a particular patient; I seek information held as to: The criteria which apply in such incidences, and How many applications have been granted in the last 5 years, and The cost of each one.

Data Tables (1)

Full Response Text

Chief Officer: Paul Richardson Freedom of Information Team First Floor Belgravia House Circular Road Douglas IM1 1AE

Our ref: 4237254 27 November 2024

Dear ###

We write further to your request received 4 November 2024, which states:

"I seek the following information:
How many Isle of Man residents are currently being treated for secondary/advanced/metastatic (or any other descriptor for stage 4) breast cancer in the Isle of Man?
How many of these patients are clinically eligible for the drug Enhertu, which is available free of charge to patients living in Scotland and 19 other countries but not in England and Wales (ie, how many are diagnosed as ER+, PR+ and HER2 low)?
Please provide all and any analysis which has been carried out as to the cost of and benefit to these patients of being prescribed Enhertu free of charge by the Isle of Man health service.
On the Mannin Line programme on Manx Radio on 31st October 2024, the Treasury Minister Dr Allinson informed listeners that it is possible for the Island's health service to step outside of the NICE guidelines (he said 'our healthcare system.... doesn't necessarily have to follow NICE guidance') in order to prescribe a particular medication for a particular patient; I seek information held as to:
The criteria which apply in such incidences, and
How many applications have been granted in the last 5 years, and
The cost of each one."

While our aim is to provide information whenever possible, in this instance the Department of Health and Social Care (the Department) is unable to provide the information that you have requested. This is in line with Section 11(3)a of the Freedom of Information Act 2015 (the Act), as a practical refusal reason applies; namely we do not hold or cannot, after taking reasonable steps to do so, find the information that you have requested. This information may be held by Manx Care.

You may wish to re-submit your request to Manx Care which is an option available on the Freedom of Information request portal, who may be able to help you.

In line with the Department of Health and Social Care’s duty to provide advice and assistance with your request under Section 15 of the Act, the Department of Health and Social Care redesigned on 01 April 2021 as a direct result of Sir Jonathan Michael’s

Independent Review of the Isle of Man Health and Social Care System. This Review continues to be a catalyst for change and improved service provision. The redesigned Department ensures the separation between the setting of policy and strategy and the delivery of services by Manx Care.

Manx Care looks to NICE as the professional body for assessing the clinical effectiveness and value for money evidence base. It does not however have a legal obligation to implement NICE Technology appraisals. Manx Care’s Integrated Medicines Optimisation Group (IMOG) are the strategic medicines management decision making committee with responsibility for promoting appropriate, safe, rational and cost- effective medicines use. We have included a link to Manx Care’s Integrated Medicines Optimisation Group (IMOG) for more information about the work of this committee.

Please quote the reference number 4237254 in any future communications.

Your right to request a review

If you are unhappy with this response to your freedom of information request, you may ask us to carry out an internal review of the response, by completing a complaint form and submitting it electronically or by delivery/post.

An electronic version of our complaint form can be found by going to our website at https://services.gov.im/freedom-of-information/Review . If you would like a paper version of our complaint form to be sent to you by post, please contact me and I will be happy to arrange for this. Your review request should explain why you are dissatisfied with this response, and should be made as soon as practicable. We will respond as soon as the review has been concluded.

If you are not satisfied with the result of the review, you then have the right to appeal to the Information Commissioner for a decision on; 1. Whether we have responded to your request for information in accordance with Part 2 of the Freedom of Information Act 2015; or 2. Whether we are justified in refusing to give you the information requested.
In response to an application for review, the Information Commissioner may, at any time, attempt to resolve a matter by negotiation, conciliation, mediation or another form of alternative dispute resolution and will have regard to any outcome of this in making any subsequent decision. More detailed information on your right to a review can be found on the Information Commissioner’s website at www.inforights.im. Should you have any queries concerning this letter, please do not hesitate to contact me. Further information about freedom of information requests can be found at www.gov.im/foi.

I will now close your request as of this date.