Organ Donation

Summary

A request was made to the Isle of Man Department of Health and Social Care for detailed statistics and protocols regarding organ donation, harvesting, and transplantation over the preceding five years. The response provided in the text is a review letter confirming the request details and the review process, but it does not contain the actual statistical data or answers to the specific questions asked.

Key Facts

• The request was received on 10 April 2018 and a response was sent on 13 April 2018.
• A review of the response was requested on 13 April 2018.
• The review was carried out by Mr Tim Casemore.
• The request covered 16 specific questions regarding organ donation statistics, protocols, and promotion.
• The provided text is a procedural review letter and does not disclose the actual organ donation data.

Data Disclosed

• 10 April 2018
• 13 April 2018
• Case reference 427433
• 9 pages
• 2 documents

Original Request

Please provide the following information, where applicable, broken down by calendar year for the immediately preceding five years: 1. How many individuals: (a) in the Isle of Man (b) Isle of Man residents in the UK, have had organs used for transplant? Please specify the numbers and description of such organs. How many of those individuals were declared brain dead but otherwise functional, with or without intervention, for the time being . What is the test used for brain death? How many of those individuals were signed up as organ donor at their death. 2. How many individuals who die are suitable for organ harvesting for transplant? What are the characteristics of a typical organ donor? Are there any characteristics that are contra-indicators to organ donation? 3. How many organ transplants have been carried out in the IOM? 4. Is organ harvesting for transplant done by doctors based in the IOM? 5. When and how is information about a potential donor patient typically shared with transplant specialists? When do transplant specialists become involved with a donor patients treatment? Are any steps typically taken, or not taken, in relation to a donor patient before the individual is declared dead? 6. Please provide any documentary protocols or rules applicable to medical staff in relation to organ harvesting or confirm that there are none. 7. Where and for what purposes have harvested organs been used? 8. How many people who receive organ transplants have lifestyles which are directly or indirectly responsible for their condition - for example, without limitation, liver and kidney transplants to those who have abused alcohol or drugs, heart transplants to those who have been obese and so on? 9. How many people who receive organ transplants are private patients? 10. Has any economic or other benefit been received by any person in relation to a harvested organ in particular, without limitation, have harvested organs been sold, have any agents, intermediaries or facilitators received any reward? 11. How many living people are currently registered as organ donors in the IOM? 12. What steps have been taken by IOM Government to promote organ donation? How much has been spent by IOM Government promoting organ donation? 13. Why is promoting the signing up to be an organ donor not included in driving licence applications? Which individuals took the decision not to promote it? 14. Has organ donor promotion ever been done when collecting census information, updating the voting register, making rates demands? 15. How many individuals are on the waiting list for transplant organs donation here and in the UK? What organs are typically in demand? 16. How many IOM residents die directly as a result of not receiving a timely organ transplant? Has any poll or survey of the public been carried out in relation to organ donation in the IOM? If so please provide details including date, questions asked and results?

Data Tables (1)

Data Tables (reformatted)

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: 427433 30 April 2018

Dear ###

Information requested by: ### Review carried out by: Mr Tim Casemore

Summary of Process 1. Request received: 10th April 2018 2. Response sent: 13th April 2018 2. Review requested: 13th April 2018

Review of Response

In your communication to Department of Health and Social Care dated 13 April 2018, you raised the following issues:

Please provide the following information, where applicable, broken down by calendar year for the immediately preceding five years: 1. How many individuals: (a) in the Isle of Man (b) Isle of Man residents in the UK, have had organs used for transplant? Please specify the numbers and description of such organs. How many of those individuals were declared brain dead but otherwise functional, with or without intervention, for the time being. What is the test used for brain death? How many of those individuals were signed up as organ donor at their death. 2. How many individuals who die are suitable for organ harvesting for transplant? What are the characteristics of a typical organ donor? Are there any characteristics that are contra-indicators to organ donation? 3. How many organ transplants have been carried out in the IOM? 4. Is organ harvesting for transplant done by doctors based in the IOM? 5. When and how is information about a potential donor patient typically shared with transplant specialists? When do transplant specialists become involved with a donor patients treatment? Are any steps typically taken, or not taken, in relation to a donor patient before the individual is declared dead? 6. Please provide any documentary protocols or rules applicable to medical staff in relation to organ harvesting or confirm that there are none.

1. Where and for what purposes have harvested organs been used?
2. How many people who receive organ transplants have lifestyles which are directly or indirectly responsible for their condition - for example, without limitation, liver and kidney transplants to those who have abused alcohol or drugs, heart transplants to those who have been obese and so on?
3. How many people who receive organ transplants are private patients?
4. Has any economic or other benefit been received by any person in relation to a harvested organ in particular, without limitation, have harvested organs been sold, have any agents, intermediaries or facilitators received any reward?
5. How many living people are currently registered as organ donors in the IOM?
6. What steps have been taken by IOM Government to promote organ donation? How much has been spent by IOM Government promoting organ donation?
7. Why is promoting the signing up to be an organ donor not included in driving licence applications? Which individuals took the decision not to promote it?
8. Has organ donor promotion ever been done when collecting census information, updating the voting register, making rates demands?
9. How many individuals are on the waiting list for transplant organs donation here and in the UK? What organs are typically in demand?
10. How many IOM residents die directly as a result of not receiving a timely organ transplant? Has any poll or survey of the public been carried out in relation to organ donation in the IOM? If so please provide details including date, questions asked and results?

Specific Issues you raised

The Public Authority did not give due consideration to the questions before issuing the refusal notice. Decision

The final decision of this review is that there is no valid reason why the public authority applied the incorrect exemption. My review has identified points at which the standard process for FOI requests was not followed within the FOI team administering the FOI process. Please accept my apologies on behalf of the Department of Health and Social Care, for the error in applying the incorrect exemption.

Please see revised response: 1. How many individuals: (a) in the Isle of Man TBC. (b) Isle of Man residents in the UK, have had organs used for transplant? Please specify the numbers and description of such organs.

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. However, you may wish to contact NHSBT statistics department who may be able to help you. Please refer to: https://www.odt.nhs.uk/statistics-and-reports/ How many of those individuals were declared brain dead but otherwise functional, with or without intervention, for the time being. All patients who donate organs after death are declared legally dead according to strict criteria prior to organ donation. What is the test used for brain death? Please refer to the Academy of Medical Royal Colleges ‘A code of practice for the diagnosis and confirmation of death’ http://aomrc.org.uk/wp- content/uploads/2016/04/Code_Practice_Confirmation_Diagnosis_Death_1008-4.pdf How many of those individuals were signed up as organ donor at their death. 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. However, you may wish to contact NHSBT statistics department who may be able to help you. Please refer to: https://www.odt.nhs.uk/statistics-and-reports/ 2. How many individuals who die are suitable for organ harvesting for transplant? In the past 5 years, 21 patients in the Isle of Man have had the potential to become organ donors.
What are the characteristics of a typical organ donor? Please refer to NICE clinical guideline 135: Organ donation for transplantation. Please refer to: https://www.nice.org.uk/guidance/cg135 Are there any characteristics that are contra-indicators to organ donation? Please refer to: https://nhsbtdbe.blob.core.windows.net/umbraco-assets- corp/6455/contraindications_to_organ_donation.pdf 3. How many organ transplants have been carried out in the IOM? None. Transplantation is carried out in specialist centres in the UK. 4. Is organ harvesting for transplant done by doctors based in the IOM? No. Specialist teams made up of transplant surgeons attend the Isle of Man to perform the retrieval procedures.

1. When and how is information about a potential donor patient typically shared with transplant specialists? Once a patient is identified as a potential donor, specialist nurses employed by NHSBT are contacted to assess suitability for donation and facilitate the process. When do transplant specialists become involved with a donor patients treatment? Never. Are any steps typically taken, or not taken, in relation to a donor patient before the individual is declared dead? Please refer to: http://aomrc.org.uk/wp- content/uploads/2016/04/Code_Practice_Confirmation_Diagnosis_Death_1008-4.pdf. The Academy of Medical Royal Colleges ‘A code of practice for the diagnosis and confirmation of death’.
2. Please provide any documentary protocols or rules applicable to medical staff in relation to organ harvesting or confirm that there are none. Please refer to the following documents: https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/1337/timely- identification-and-referral-of-potential-organ-donors-nhsbt.pdf and http://odt.nhs.uk/pdf/family_approach_best_practice_guide.pdf
3. Where and for what purposes have harvested organs been used? For therapeutic transplantation in the UK.
4. How many people who receive organ transplants have lifestyles which are directly or indirectly responsible for their condition - for example, without limitation, liver and kidney transplants to those who have abused alcohol or drugs, heart transplants to those who have been obese and so on? While our aim is to provide information whenever possible, in this instance Department of Health and Social Care (“the Department”) is unable to provide the information. This is in line with s11(3)(a) of the act, as a practical refusal reason applies namely we not hold or cannot, after taking reasonable steps to do so, find the information that you have requested. However you may find it helpful to know this information can be obtained from individual transplant centres in the UK.

5. How many people who receive organ transplants are private patients? While our aim is to provide information whenever possible, in this instance Department of Health and Social Care (“the Department”) is unable to provide the information. This is in line with s11(3)(a) of the act, as a practical refusal reason applies namely we not hold or cannot, after taking reasonable steps to do so, find the information that you have requested.

6. Has any economic or other benefit been received by any person in relation to a harvested organ in particular, without limitation, have harvested organs been sold, have any agents, intermediaries or facilitators received any reward? No, this would be illegal in the UK and the Isle of Man.

7. How many living people are currently registered as organ donors in the IOM? As of 21/03/18, 13,089.
8. What steps have been taken by IOM Government to promote organ donation? How much has been spent by IOM Government promoting organ donation? While our aim is to provide information whenever possible, in this instance Department of Health and Social Care (“the Department”) is unable to provide the information. This is in line with s11(3)(a) of the act, as a practical refusal reason applies namely we not hold or cannot, after taking reasonable steps to do so, find the information that you have requested. However you may find it helpful to know, the Isle of Man Government Cabinet Office or the Chief Secretary’s Office may hold this information.
9. Why is promoting the signing up to be an organ donor not included in driving licence applications? Promotion is included in driving licence applications currently on the Isle of Man. Which individuals took the decision not to promote it? Please refer to the response above.
10. Has organ donor promotion ever been done when collecting census information, updating the voting register, making rates demands? While our aim is to provide information whenever possible, in this instance Department of Health and Social Care (“the Department”) is unable to provide the information. This is in line with s11(3)(a) of the act, as a practical refusal reason applies namely we not hold or cannot, after taking reasonable steps to do so, find the information that you have requested. However you may find it helpful to know, the Isle of Man Government Cabinet office or the chief secretary’s office may hold this information
11. How many individuals are on the waiting list for transplant organs donation here and in the UK? As of 21/03/18, there were 7 patients awaiting organ transplantation on the Isle of Man. In relation to figures for the UK, the Department does not hold this information.

What organs are typically in demand? UK figures including waiting lists for specific organs recently updated and available at https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1343/annual_stats.pdf 16. How many IOM residents die directly as a result of not receiving a timely organ transplant? In the past 5 years, 4 patients have died on the Isle of Man while waiting for organ transplantation. Has any poll or survey of the public been carried out in relation to organ donation in the IOM? If so please provide details including date, questions asked and results? While our aim is to provide information whenever possible, in this instance Department of Health and Social Care (“the Department”) is unable to provide the information. This is in line with s11(3)(a) of the act, as a practical refusal reason applies namely we not hold or cannot, after taking reasonable steps to do so, find the information that you have requested. However you may find it helpful to know, the Isle of Man Government Cabinet office or the chief secretary’s office may hold this information 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. Yours sincerely

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: 427433 13 April 2018

Dear ###

This request is being handled under the Freedom of Information Act 2015.

We write further to your request which was received on 10 April 2018 and which states:

"Please provide the following information, where applicable, broken down by calendar year for the immediately preceding five years: 1. How many individuals: (a) in the Isle of Man (b) Isle of Man residents in the UK, have had organs used for transplant? Please specify the numbers and description of such organs. How many of those individuals were declared brain dead but otherwise functional, with or without intervention, for the time being . What is the test used for brain death? How many of those individuals were signed up as organ donor at their death. 2. How many individuals who die are suitable for organ harvesting for transplant? What are the characteristics of a typical organ donor? Are there any characteristics that are contra-indicators to organ donation? 3. How many organ transplants have been carried out in the IOM? 4. Is organ harvesting for transplant done by doctors based in the IOM? 5. When and how is information about a potential donor patient typically shared with transplant specialists? When do transplant specialists become involved with a donor patients treatment? Are any steps typically taken, or not taken, in relation to a donor patient before the individual is declared dead? 6. Please provide any doc

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