Organ Donation Review - Claire Williment - Submission - 7 March 2018

Tom Leveridge

Scrutiny Office

States Greffe  West End Donor Centre Morier House  26 Margaret Street St Helier  London

Jersey JE1 1DD  W1W 8NB

Sent via e-mail to: t.leveridge@gov.je

7th March 2018 Dear Mr Leveridge,

Jersey Organ Donation Review

I am writing in response to the letter from Deputy R J Renouf (Chairman of the Health and Social Security Scrutiny Panel) to my colleague Louise Davey, seeking information regarding organ donation and transplantation. This letter has been passed to me for a response, as I am currently leading work with NHSBT to support the various Government initiatives to introduce an opt out system for organ donation.

To respond to the queries in the order in which they are raised:

1. Copies of questions that the next of kin of potential organ donors are asked Guidance on the discussion with the next of kin regarding the potential for organ donation, including the questions that should be asked, is available at the following sections of the Organ Donation and Transplantation website:

• http://www.odt.nhs.uk/deceased-donation/best-practice-guidance/consent- and-authorisation/
• https://nhsbtdbe.blob.core.windows.net/umbraco-assets- corp/1581/approaching-the-families-of-potential-organ-donors.pdf

Guidance on the questions to be asked once consent for donation is in place is provided in the enclosed document FRM4211'.

2. What information is stored on the Organ Donor Register? The following data is stored on the Register:

• Title
• First Name*
• Other Name
• Last Name*
• Preferred Name
• Date of Birth*
• Sex* (male, female, other, prefer not to say, transgender)

• Ethincity
• Religion
• Address*
• Postcode*
• Telephone
• Mobile
• Email
• Donation decision: 'Opt-in', 'Opt-out' or 'Nominate a representative'
• Donation choices (which organs/tissue they would like to consent to donate):

Kidneys, Heart, Liver, Corneas, Lungs, Pancreas, Small Bowel, Tissue

• Withdrawal reason and date (for those that have previously registered and subsequently decided to withdraw from the register)
• Unique Identification Number(s)

NHS Number (English, Welsh, NI residents)

CHI Number ( Scott ish residents),

DVLA Number

DVANI Number (Northern Ireland residents)

Death Status

Date of death

(* Indicates Manatory Fields)

It should be noted that the data regarding ethnicity and religion are not made available to the operational teams at the point of determining the recorded decision of a potential organ donor.

3. Who has overall responsibility for the Organ Donor Register?

The Chief Executive of NHS Blood and Transplant, Ian Trenholm, has overall responsibility for the Organ Donor Register.

The Head of the Organ Donor Register, Alex Hudson, also has Information Governance responsibility and is the Information Asset Owner for the Register within NHS Blood and Transplant.

4. Where is the Register stored?

The Register is stored within the EU on the Microsoft Azure Cloud (Republic of Ireland and Netherlands). A copy of the register is also stored on an NHSBT server.

5. How is the Register maintained?

There are a number of approaches for ensuring the Register is effectively maintained:

• The ICT support and maintenance of the Register is provided by a Third Party Supplier (Northgate Public Services).
• The general operational service, such as identifying and addressing any potential conflicts in data and responding to requests for the establishment of nominated representatives for organ donation, is provided by a team within the Organ Donation and Transplantation Directorate within NHS Blood and Transplant.

• The Register's website is maintained by the Digital Team within the Communications Directorate of NHS Blood and Transplant.
• Work to raise awareness of the Register and campaigns/ marketing activity falls within the responsibility of the Communications Directorate of NHS Blood and Transplant.

6. Who has access to the Register?

The following people have access to the Organ Donor Register:

• Specialist Nurses for Organ Donation and Tissue Donation Nurses employed by NHS Blood and Transplant access the Register to determine if the potential donor had recorded a decision.
• Administrative teams within NHS Blood and Transplant. This includes the teams responsible for ensuring the Organ Donor Register data is accurate. It also includes the ODT Hub Operations team, who are responsible for liaising with the Specialist Nurses for Organ Donation.
• Staff working within the Organ Donor Line team, who respond to calls from the general public wanting to record a decision on the Organ Donor Register. This is provided by a third party contact centre – TelePerformance.

7. On what basis can the Register be amended?

Data on the Register can be amended by members of the ODR and Organ Donor Line teams, in line with requests from the individuals concerned or, where appropriate, their representatives. For example, individuals can request an amendment – such as a change of surname or decision about which organs they want to donate – by inputting data to the Organ Donor Register website or calling the Organ Donor Line. The teams will amend data on the Register in line with their request.

8. What happens if an individual changes their mind?

They are able to amend their registration decision (opt-in, opt-out) and/or their individual organ preferences via the website, by calling the 24/7 Organ Donor Line or make an amendment request in writing. Individuals have the right to access their own data and to be forgotten.

9. Can a legal representative amend a donor's choice on their behalf?

Yes - there is a process to nominate an appointed representative to act on behalf of an individual regarding recording decisions on the Register. A parent can also amend the decision of a child under the age of 12.

10. Are there any internal supervision and compliance procedures around the Register?

The Organ Donor Register complies with the requirements set out in the Human Tissue Act, the Data Protection Act and from May 2018, the General Data Protection Regulations.

NHS Blood and Transplant also has established reporting systems from the ODR to internal Clinical Governance, Quality and Information Governance standards. An internal performance report is made available to the Executive Team within NHS Blood and Transplant.

11. Is there independent oversight of the Register?

The Register is subject to internal audits, which are currently overseen by Price Waterhouse Cooper (PWC)

12. How does the process for triggering different teams from across the UK work in practice?

Clinicians in Intensive Care are responsible for referring potential donors to NHS Blood and Transplant. Once a referral is made, a Specialist Nurse for Organ Donation (SNOD) is mobilised to the hospital to determine the donation potential. If donation is a possibility, the SNOD will determine if any decision is recorded on the Organ Donor Register and approach the family to discuss donation. Once consent is given, the ODT Hub Operations team offers the organs for transplantation, in line with nationally agreed offering protocols (further data on this process is available at: http://www.odt.nhs.uk/transplantation/tools-policies- and-guidance/policies-and-guidance/.

Once organs have been accepted, the ODT Hub Operations team mobilise a Cardiothoracic and/ or Abdominal National Organ Retrieval Service (NORS) team to retrieve the organs. The NORS team also undertakes a range of checks during the retrieval process to assess the quality of the organs for transplantation. They will alert the relevant transplant unit if there are any concerns to agree whether the retrieval should proceed. In some cases, a Unit that had originally accepted the organ may then decline it. In these circumstances, the organ is re-offered through the ODT Hub Operations Team on a fast-track basis.

Once the organs have been agreed as suitable for transplantation, the ODT Hub Operations team organises the transportation of the organs to the relevant Transplant Units. The NORS team packs the organs ready for transportation and the ODT Hub Operations team alerts the Unit when they have been despatched.

13. Are there any guidelines which apply to clinicians setting out how they should act in cases where organ donation is seen as a possibility? Could we provide a copy of these guidelines?

Best practice guidance on organ donation has been published by the General Medical Council, the UK Donation Ethics Committee and NICE. The ODT website contains details regarding best practice in identifying, referring and caring for potential organ donors. This is available at: http://www.odt.nhs.uk/deceased- donation/best-practice-guidance/donor-identification-and-referral/.

There is also best practice in consent. This is available at: http://www.odt.nhs.uk/deceased-donation/best-practice-guidance/consent-and- authorisation/

I hope that this has addressed your queries. Please do not hesitate to contact me if you require any further information (telephone: 07525299064; email: Claire.williment@nhsbt.nhs.uk). You may also find it helpful to look at the Organ Donation and Transplantation website (www.odt.nhs.uk), which contains a wealth of information regarding the organ donation, retrieval and transplant process.

Yours sincerely,

Claire Williment

Head of Opt Out Development

Patient Assessment Form

Directions for completion

1  This form must be completed in black or dark

blue ink by the Specialist Nurse – Organ Donation (SNOD)/Nurse Practitioner (NP)/Assistant Nurse Practitioner (ANP)/Tissue Transplant Co-ordinator and signed where required.

2  The original copy should be retained by the

SNOD/NP/ANP/Tissue Co-ordinator for the donor file.

3  A copy should be made for the patient's medical records. 4  In the event of organ and tissue donation, a legible

copy should be sent to the relevant Tissue Establishment, where required.

NOTE: The term patient is used throughout the form

to refer to the potential donor.