MS patients

Summary

A request for comprehensive Multiple Sclerosis statistics in the Isle of Man since 1990 was partially fulfilled, with the Department of Health and Social Care providing data from 2007 onwards based on hospital records while refusing pre-2007 data and specific village-level breakdowns.

Key Facts

• There are 146 unique live patients with an MS diagnosis recorded in Nobles Hospital data since 2007.
• The gender split among these patients is 113 females and 33 males.
• The average age at the first recorded hospital episode for MS is 52 years, ranging from 18 to 82.
• Geographic data is provided for broad regions (e.g., Douglas and Onchan) but not individual towns due to privacy exemptions.
• Data prior to 2007 is not held in an easily-reportable format and was refused.

Data Disclosed

• 146
• 2007
• 1990
• 50
• 32
• 31
• 26
• 7
• 33
• 113
• 52
• 18
• 82
• 2018-11-29
• 2018-11-21

Exemptions Cited

• Section 11 (3)(a) of the Freedom of Information Act 2015 (information not held)
• Exemption 9.5 of the Code of Practice on Access to Government Information (information not held in easily-reportable format)
• Section 25 of the Act (absolutely exempt personal information due to low figures)

Original Request

How many people in the Isle of Man are currently diagnosed with MS? Where are these cases broken down geographically, to towns and villages on the Island? How many people have been diagnosed with MS by year, since 1990? How many are men and how many are women? What age are these people at the point of diagnosis?

Data Tables (2)

Full Response Text

Chief Executive: Malcolm Couch Freedom of Information Team DHSC Digital Cronk Coar Strang IM4 4RJ

(01624) 642621 dhsc@foi.gov.im Website: www.gov.im/dhsc

Our ref: 659165 29th November 2018

Dear ###

We write further to your request which was received on the 21st November 2018 which states:

"How many people in the Isle of Man are currently diagnosed with MS? Where are these cases broken down geographically, to towns and villages on the Island? How many people have been diagnosed with MS by year, since 1990? How many are men and how many are women? What age are these people at the point of diagnosis?"

While our aim is to provide information whenever possible, in this instance the public authority does not hold or cannot, after taking reasonable steps to do so, find the information that you have requested (Section 11 (3)(a) of the Freedom of Information Act 2015). The Department does not hold Island wide information. The information that we do hold pertains only to Nobles Hospital Information. When a patient comes into hospital, there may be several diagnoses. Each patient’s episode of care is ‘coded’, for statistical and analysis purposes. The patient may have had a fall and injured their leg, as a result of their Multiple Sclerosis (MS). So, in this instance, the patient would be coded primarily as having an injured leg, and secondly as having MS (there can be more codes for the episode of care, depending on the circumstances). The number of unique live patients who have had a diagnosis of Multiple Sclerosis (within the first 10 diagnosis positions) is 146. Please note that this data only goes back to 2007.

As we do not hold information prior to 2007 in an easily-reportable format, under Exemption 9.5 of the Code of Practice on Access to Government Information (revised 2016), we are refusing part of your request. Question 02) Where are these cases broken down geographically, to towns and villages on the Island? Please find below a table of the areas in which the 146 patients are currently registered: Area(s) Of the 146 identified patients Douglas and Onchan 50 East, Peel and Central 32 North 31 South 26 No longer reside on the Island 7 While our aim is to provide information wherever possible, in this instance, the figures for individual towns/ villages are too low, and therefore absolutely exempt under section 25 of the Act (absolutely exempt personal information). The reasons why that exemption applies are that: • The Department of Health and Social Care is satisfied that the information amounts to personal data of which you are not the data subject; and • The Department of Health and Social Care is satisfied that disclosure of the information would contravene one of the data protection principles as set out at Article 5 of the General Data Protection Regulations as it applies in the Isle of Man pursuant to the Data Protection (Application of GDPR) Order 2018, namely that the Department of Health and Social Care can only disclose the information where it would be fair, lawful and meet one of the conditions for lawful processing in Article 6, and in this case, none of those conditions have been met. Question 03) How many people have been diagnosed with MS by year, since 1990? While our aim is to provide information whenever possible, in this instance the public authority does not hold or cannot, after taking reasonable steps to do so, find the information that you have requested (Section 11 (3)(a) of the Act). As we do not hold information prior to 2007 in an easily-reportable format, under Exemption 9.5 of the Code of Practice on Access to Government Information (revised 2016), we are refusing part of your request.

However, please find details below of the 146 coded patients, grouped by their first episode when Multiple Sclerosis is recorded. This is potentially not their first year of diagnosis, but the first time that they entered the hospital and the Multiple Sclerosis was recorded in the codes. Year Count of Year 2007 5 2008 26 2009 11 2010 18 2011 12 2012 7 2013 11 2014 13 2015 14 2016 13 2017 7 2018 9 Grand Total 146 Question 04) How many are men and how many are women? Of the 146 coded patients, 33 are male and 113 are female. Question 05) What age are these people at the point of diagnosis? While our aim is to provide information whenever possible, in this instance the public authority does not hold or cannot, after taking reasonable steps to do so, find the information that you have requested (Section 11 (3)(a) of the Act). As we do not hold information prior to 2007 in an easily-reportable format, under Exemption 9.5 of the Code of Practice on Access to Government Information (revised 2016), we are refusing part of your request. However, the average age of the coded 146 patients, where the first episode of Multiple Sclerosis is recorded is 52 years old. The youngest of the patients’ age is 18, and the oldest is 82.

Please quote the reference number 659165 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.

Yours sincerely