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Changes pave way for organ donation ‘opt out’ system

Thursday, 27 January 2022

Organ donation heartIn the run up to the move to an ‘opt out’ system for organ donation on the Isle of Man, an important change is being made to the driving licence application form.

From Tuesday 1 February, the option for Isle of Man residents to record their organ donation decision via the driving licence application process will be removed.

Instead, applicants will be prompted to register their decision directly on to the NHS Organ Donor Register – either by visiting NHS Organ Donation or calling 0300 123 23 23. Users of the NHS app will also be able use this service to register, check or update their decision.

This move has been taken following a review of Island organ donation records carried out by the Isle of Man Government and NHS Blood and Transplant.

As part of this work, the Isle of Man Government and NHS Blood and Transplant are now undertaking a joint project to reconcile up to 66,000 driving licence records with the central NHS Organ Donor Register. The secure transfer of data is due to take place in February once the new driving licence application form is in use.

Infrastructure Minister Tim Crookall MHK said:

‘As part of our preparations for the move to the new “opt out” system we have worked closely with the team at NHS Blood and Transplant to identify the best and most effective way for organ donation decisions to be recorded.

‘Rather than continue to collect data on the Island ourselves, a decision has been taken to stop asking people to indicate their preference as part of the driving licence application process and, instead, provide all the relevant information to enable them to register direct.

'This is an important step in readying ourselves for the implementation of the new law. We expect all existing records to be successfully transferred to the NHS register by the end of February.’

The Human Tissue and Organ Donation Bill received Royal Assent to become an Act in July last year, moving the Isle of Man closer to requiring people to opt out if they do not want to donate. Work is now taking place to implement the new law during the current administration and set a commencement date to enable it to come into force.

Cabinet Office Minister Kate Lord-Brennan MHK said:

‘The donation of organs and tissue saves and improves thousands of lives across the UK and crown dependencies each year. The hope is that the implementation of the Human Tissue and Organ Donation Act (2021), known as Daniel’s Law in memory of Daniel Boyde, will increase the number of available organ donors to address the shortage in the UK and Isle of Man.

‘Organ donation remains an individual choice and relatives of loved ones who die in circumstances where a transplant is possible will still be consulted before donation goes ahead. It is important to discuss your choice with your family and loved ones and register your donation decision with the Organ Donor Register – whether you wish for your organs to be donated or not.’

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said:

’We are extremely pleased that we have been able to work with the team in the Isle of Man to support the change in the law. By joining the NHS Organ Donor Register and telling your family about your decision, you can help us save even more lives.’

To find out more about organ donation, or to register your organ donation decision, visit NHS Organ Donation or call 0300 123 23 23.

Information on the Isle of Man driving licence application process can be found by visiting the Isle of Man Government website, under the Travel, Traffic and Motoring section.

Frequently Asked Questions

What changes are happening to organ donation registrations on the Isle of Man?

From Tuesday 1 February, the driving licence will be updated so that an individual’s organ donation decision will no longer be recorded on the driving licence form and applicants will instead be prompted to register their decision directly on the NHS Organ Donor Register.

At the same time, up to 66,000 driving licence records currently held on the Island will be reconciled against registrations already made on the NHS Organ Donor Register. The secure transfer of data is due to take place in February once the new driving licence application form is in use.   

Why are you making this change?

During preparations for the implementation of the organ donation law change on the island, the Isle of Man Government have undertaken a review of organ donation records with the support of NHS Blood and Transplant.

As a result of this process, it was agreed that the most effective way for people to register their organ donation decision was to do so directly via the NHS Organ Donor Register website, helpline or the NHS App.

Currently, the driver’s licence form asks whether you want to donate your organs and which organs you are interested in donating, but it does not give the option to register a decision to NOT donate your organs. 

The Isle of Man Government is working to simplify the process by encouraging people to register a decision, whether it is to donate or not to donate. The advice is to speak with your family and then register your decision on the NHS Organ Donor Register.

Who holds the Isle of Man’s organ donation registration data?

NHS Blood and Transplant (NHSBT) provides a blood and transplantation service to the NHS and Manx Care. They manage the NHS Organ Donor Register. As of February, this is where all decisions on organ donation from Isle of Man residents will be held. The Isle of Man is working with NHS Blood and Transplant to streamline our organ donation registration process to aid the enactment of the Human Tissue and Organ Donation Bill. 

Who will be able to access my personal information on the NHS Organ Donor Register? 

Only people directly involved in the Organ Donation and Transplantation process, which includes the contact centre for the Organ Donor Helpline, can have access to your personal information. The NHS Organ Donor Register is a medical record and NHS Blood and Transplant is responsible for keeping that information secure and in accordance with data protection laws.

Is the NHS Organ Donor Register GDPR compliant and what happens to my personal information? 

The NHS Organ Donor Register is a medical record and is therefore confidential and secure. NHS Blood and Transplant is responsible, like all heath care providers, for keeping your personal data only for the purpose for which it is intended. NHS Blood and Transplant is also required to ensure the NHS Organ Donor Register is GDPR compliant and they are subject to the same laws on data protection as everyone else. They only contact people on the Register about their registration. Their full privacy notice is available on www.nhsbt.nhs.uk/privacy  

What happens next?

If you or a relative has previously indicated on your Isle of Man driver’s licence form at any point that you would like to donate your organs, this information will be automatically added to the NHS Organ Donor Register.

If you have already registered with the NHS Organ Donor Register directly…

NHS Blood and Transplant will ensure that your most recent decision is reflected on the NHS Organ Donor Register (either that registration or your registration via your Isle of Man driving licence). This information will be updated by the end of February when you can check your registration status by contacting NHSBT on 0300 123 23 23 or via the NHS App.

If you have previously registered via your driving licence but not directly with the NHS Organ Donor Register…

Your decision indicated on your driving licence form will be added to the NHS Organ Donor Register. License renewals within the last year could be identified as a new NHS Organ Donor registration and you may receive a letter confirming your registration, along with an NHS Organ Donor card. If you do not receive any communication, then you will still be able to check your registration status by the end of February by contacting NHSBT on 0300 123 23 23 or via the NHS App.

If you did not complete the section on your driving licence form about donating your organs…

Then no information will be transferred. If this is the case, but you would like to now register a decision, please do so through the NHS Organ Donor Register 

Will I be contacted when my information has been transferred?

If you have renewed your license within the last year, you may receive a letter from the NHS Organ Donor Register confirming your decision. Letters will not be sent for licence renewals completed prior to this period, however your donation decision information will still be securely transferred to the NHS Organ Donor Register. 

How can I register, check or amend my decision on organ donation?

You can register or amend your organ donation decision at any time by visiting www.organdonation.nhs.uk. Alternatively, you can check, register or update your organ donation decision via the NHS App or by calling the Organ Donor Helpline on 0300 123 23 23. The data transfer will not be completed until the end of February, so if you wish to check your status please wait to do so until then.

Can I choose what to donate?

If you choose to donate, you can choose to donate either some or all of your organs. By registering to become an organ donor you have the option to donate organs such as your heart, lungs, liver, kidneys, pancreas and small bowel. You can also choose to donate your tissues, including your corneas. Each organ donor can save up to nine lives through their donation and tissue donors can improve the lives of many more.

When you register as an organ donor, do your organs automatically get donated when you die?

Anyone can register a decision to become an organ donor after death, there is no age limit. To donate organs after death, a person needs to die in hospital in specific circumstances. Specialist healthcare professionals decide in each individual case whether a person's organs and tissue are suitable for donation. For more information about eligibility for organ donation after death. For more information about eligibility for organ donation after death visit NHS Organ Donation - who can donate.

How does the NHS Organ Donor Register work?

If you die in circumstances in which organ donation is possible, a specialist nurse will check the NHS Organ Donor Register to see if you have recorded a decision about organ donation before they discuss this with your family.

Even in an ‘opt out’ system, families will still be consulted before organ donation goes ahead. Families are more likely to support donation when they know what their relative wanted. Sharing your decision with your family will give them the certainty they need and will make it easier for them to support your choice.

In the case of someone who died off-Island, would the family have had the opportunity to indicate whether or not their organs or tissue could be donated?

If an island resident dies in the UK and is eligible to donate their organs, efforts will always be made to contact their family and loved ones. Deemed consent criteria would not apply if a person died in a part of the UK where they are not ordinarily resident.  Specialist nurses will work to explore the last known decision and help the family to support this. Organ donation would not go ahead if the family cannot be contacted.

What is the Human Tissue and Organ Donation Bill and when will it be in place?

Known as ‘Daniel’s Law’, the Human Tissue and Organ Donation Bill was introduced in memory of Daniel Boyde, a 15-year-old boy whose organs were donated after he died in a car accident.

Its purpose is to modernise the law relating to consent for the use of organs and other human tissues for transplant activities. The ‘opt out’ consent system will mean that it will be considered that individuals agree to become an organ donor when they die if they are over 18 years of age, have not opted out and are not in an ‘excluded group’. 

The Bill has now received Royal Assent, which means that the Isle of Man is one step closer to an opt-out system of organ donation registration, like in England, Scotland and Wales. There are numerous operational and legislative steps to take before the bill is enacted and this is a longer-term project, which Public Health is currently progressing. All changes and updates will be communicated to the public in a timely manner.

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