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Donor family and recipient contact

Information the donor family and recipient are entitled to know

Protecting the anonymity of both the donor and transplant recipient is of paramount importance. Post-transplant the Specialist Nurse in Organ Donation (SN-OD), the Recipient Transplant Coordinator and the Donor Records Department (DRD) at NHSBT will act as a conduit for information to pass between the two parties. Donor family and recipient communications will be discussed by the SN-OD with the donor family at the time of donation and with the recipient pre, and/or post-transplant. If the donor’s family wish, the SN-OD will write to them within 15 working days post-donation, and inform the family whether the organs have been successfully transplanted or not. A brief anonymous description of who the organs were donated to and how they are functioning may also be given.

In 2011, the British Transplant Society produced the document ‘Guidelines for the consent for solid organ transplantation in adults’. The following guidance was included with regards the sharing of donor or recipient information to the respective donor family or recipient.

The donor’s family will only be told the following details about the transplant recipient:

  1. Age range (decade)
  2. Gender
  3. Outcome of the transplant

Additionally, the following donor information is acceptable to communicate to the recipient:

  1. Age range
  2. Gender
  3. Type of death (such as trauma or CVA)
  4. Whether the donor poses a greater risk of transmission of infection or malignancy.

The following donor information should not be transmitted to the recipient:

  1. Name or initials
  2. Occupation or social class
  3. Date of birth (D.O.B.)
  4. Place of donation
  5. Ethnicity
  6. Sexual, alcohol or drug history

Where specific information is required by the recipient (such as smoking history), that information may be given so long as donor confidentiality is maintained and the information is relevant to the outcome.

Donor Family Letter 15 Days Post Donation

The Specialist Nurse in Organ Donation (SN-OD) that facilitates donation will contact the donor family if they wish no more than 15 working days post-donation to give them some information about the organ outcome and thank them for their generosity at a time of great adversity. The letter will include details of whether the organs have been successfully transplanted, sent for research or found to be unsuitable for transplantation. Organ outcome information is collected from the transplant centre for feedback to donor families, but also as a mandatory requirement on behalf of the Human Tissue Authority.

Donor Family ‘Thank You’ Correspondence

It is widely acknowledged that donor families gain a huge degree of comfort from receiving an acknowledgement of thanks from the recipient whose life has been saved as a consequence of a decision made at a very difficult time.

Transplant recipients may wish to write a letter of thanks to their donor family once they personally feel ready to do so post-transplant. This should ideally be discussed pre-transplant with the recipient and then again before discharge post-transplant by the transplant team.

Although there are many individual reasons why some recipients don’t feel they can ever write, for those that would like to, it is important to understand how the process works. A transplant recipient writes a message, letter or card to their donor’s family. This can then be passed on to their Transplant Coordinator who reads the letter to check for identifiable information, then if satisfactory, forwards it on to the Donor Records Department at NHSBT, as well as usually keeping a photocopy on file for future reference. The Donor Records Department then match the correspondence with the relevant donor file, and the donor’s family are made aware that a letter/message is waiting for them. If they wish to receive it, it is then forwarded on in a separate envelope to be opened at their discretion.

Alternatively, transplant recipients can now send any correspondence intended for donor families directly into the Donor Records Department at the postal address or email address below. All correspondence is again checked for identifiable information, and if satisfactory, follows the same process for identifying the relevant donor file.

Donor Family Care Department
NHS Blood and Transplant
14 Estuary Banks
Speke
Liverpool
L24 8RB

Email: transplant.recipientcare@nhsbt.nhs.uk

When using email, please send the correspondence as an attachment, and be sure to include your full name, date of birth, date and type of transplant and the hospital where it took place in the body of the email text. These details are not passed on beyond the Donor Records Department, but are used simply to match the correct donor and recipient records.

A short ‘how to’ video is available to view below.

Guidance on Content

Correspondence should not contain any recipient identifiable information such as surname, address/town name, place or company of work or the name of the hospital in which the donation or transplant took place. This is to ensure both parties are able to remain anonymous in the first instance. There is no reason why more personal information about social life, hobbies, children or a spouse can’t be shared. It is not necessary for a recipient to disclose the reason they came to need a transplant to the donor’s family.

Guidance for recipients on how to write letters thanking their donor family is provided in the leaflet ‘Thanking your donor family’, available from transplant centres and to download below. The leaflet provides recipients with guidance on the following:

  • Where to start
  • What to include
  • How to say "thank you"
  • Receiving a letter from a donor family
  • Publicising a transplant

Thanking your donor family

The donor family are asked at the time of donation to state whether they wish to receive a thank you letter, should one be written. If they stipulate that they would like to receive a thank you letter and a letter is written by the recipient, this will be forwarded to the donor family in a sealed envelope so they can choose to open it at a time that is right for them. All correspondence will be checked to protect the anonymity of both recipient and donor family before sending on to the other party in accordance with NHSBT’s policies. A photocopy will be kept on file. Occasionally donor families state that they do not wish to receive any thank you letters. In this instance, should a letter be written by the transplant recipient, the family will be informed a letter has been sent. The letter is then kept on file should the donor family ever change it’s mind.

Social Media

This is certainly a significant consideration in the modern era, and is sometimes difficult to strike the right balance between sharing a positive story and receiving unexpected attention from strangers as a result. Speak to your Transplant Professional for guidance. An guide to Social Media use for both transplant recipients and donor’s families is in production and should be available in the near future.

Donor Family Contact

Should a donor family have any questions or require any information following donation, a member of the team is always available to help.

The Donor Family Care Service along with your Specialist Nurse – Organ Donation can be contacted via the details below:

Donor Family Care Service
NHS Blood and Transplant
14 Estuary Banks
Speke
Liverpool
L24 8RB
Tel: 0151 268 7063

Email: donor.familycare@nhsbt.nhs.uk

It's never too late or too early to write!